Still Healing....

Since my last post, the chest pain got better after scaling back on exercise the chest area.  I haven't needed pain meds.  I still got the CT though, which showed couple of nodules in the right lung, but apparently they are two small to do anything about and I was told not to worry about it since I have no risk factors for lung cancer.  The surgeon also wanted to me to keep exercising my chest muscles since the scar tissues attached to them need to be stretched out. I also had my 3 months follow-up with the radiation oncologist and she also said I needed to stretch the chest muscles daily... possibly for the rest of my life.  Right now I still have the pain around the deep tissue scars near the surgical sites.  My radiated breast is also pretty tender, and when I stretch, it feels like tissues in my breast are tearing. It's worrying that my healing is going a lot slower than everyone expects.

On the bright side, my fatigue has improved.  I don't feel quite as tired these days and have been having more good days.  My boyfriend was sick for good part of December though, and I did at times feel like something was coming on, but by the next day I was feeling better.  I was really worried about getting sick since I got sick a lot this past year and a half, and each time it took weeks for me to recover.  I just really did not want to go through anything like that now after the year I had, and with the holidays and all.  

In late November and early December I did end up taking couple of FMLA days for my fatigue, but by end of the month I was putting in a full 40-hour week.  Although I managed, I did find it somewhat tiring, and I didn't like that it interfered with my workouts.  I still exercised 3-4 times a week, but not as much as I would have if I wasn't working.  I definitely felt a lot better when I wasn't working.  I had been thinking a lot about quitting my job to live life more the way I want to.  I was originally thinking of quitting in February or late January.  Now that I'm realizing how much better I feel on my days off, I'm now thinking about putting in my two weeks notice on Monday.  It's a scary thought, since I have a mammogram on January 7th and there's no guarantee I'll be in the clear.  Quitting now means I'll be paying $800+ a month for health insurance with no income, and I lose my short and long-term disability insurance.  I put in my 60-day notice to my landlord though, so I am also losing my home.  I don't want to stay in my expensive apartment too long if I am unemployed.  By March, I want to be free to go whereever.  I just hope my January scans don't mess up my plans.

Fatigue and Chest Pain

6 months since diagnosis...

4 months since surgery...

6 weeks since last radiation treatment...

4 weeks since starting Tamoxifen...

2.5 weeks back at work...

Towards the end of my medical leave I was starting to feel better and things were looking up.  Then I started working again and things took an abrupt turn for the worst.  If I had any fatigue when I wasn't working, it wasn't noticeable.  Since starting work though, I became much more fatigued.  Is it possible to be this tired from 8 hours at a desk job?  I can barely get through my work day and by the time I'm done I don't have energy for much else.  On the weekends after my long morning walks, I end up in bed for a few hours - too tired to do anything else.  There was at least one day where I had to take the day off of work.  There were many more days I wished I could rest.  

The fatigue was one thing, but I also started developing chest pains on the cancer side. This wasn't coming from the surgical sites.  It felt more muscular, in the chest wall.  It was isolated to the upper left quadrant of the right breast - not too far from the heart.  The pain was a dull ache that felt like pressure on my chest on one side.  It started about a month ago but it was mild then.  Now it is getting very uncomfortable and worrisome.  I reached out to all of my doctors.

The surgeon thought it was inflammation from the radiation.

Oncology suggested getting an EKG and going off of Tamoxifen for couple of weeks to see if it helps with the fatigue.

Radiation oncology didn't think it was radiation related.  Told me to take anti-inflammatories and rest more.

The PCP wants to let my cancer team handle this since it's probably related to the treatments.

I decided to take oncology's advice and stopped Tamoxifen yesterday.  Then I went to a walk-in facility and got an EKG, Tropnin (heart enzyme) test, and chest x-rays.  All were normal so thankfully it was not a heart issue.  It was getting to a point where I needed to have some relief, so I popped a few ibuprofens.  After some time, I started to feel better.  I was also sleeping pretty well until a smoke alarm started beeping due to low battery.  I had to get up and rip the alarm off the ceiling and pull the batteries out so it would shut up.  Then I couldn't get back to sleep.  But I digress.

Anyway, I will be popping ibuprofen for a while and cut back on my exercises.  On the 21st I have a CT scan so hopefully I'll have a better idea of what is going on then.  If I'm lucky I'll feel better by then, but it seems inflammation can take weeks or months to heal.  I really don't think I can go on like this for months.  

Back at Work...

Well, the inevitable happened and I am back at work as of this week.  There were some changes at work while I was gone, but nothing big so it was pretty easy to get back into.  The only problem was that I did not sleep well the first couple of nights.  I'm not quite sure why and whether the stress of being back at work caused it.  My goal at work now though is to not stress too much and take it a little easier.  There's no need for me to be an overachiever.  Unfortunately I do like a lot of what I do and I can sit at my desk for hours focused on work, even though I should be taking frequent breaks and moving my body.  I've also been having a hard time getting up in the mornings early enough to go to the gym, so I only made it once.  I did on another day leave work a little early because I needed some outdoor walk time at the garden.  I miss being able to go like I used to.  I still have a lot of appointments here and there tho so it's also a little tough to have to work those in.  Overall, it wasn't a bad first week.  Despite enjoying what I do though, I do prefer to be doing something else with my life.  I especially miss being more active.  Right now I don't have the energy to be as active as I want to be while working, but maybe in time.  I also miss the slower pace of life where I am not having to rush around to get things done, or to sleep in if I don't sleep well or am not feeling well.  Early retirement is still heavily on my mind.

Physical Therapy Sessions 1 & 2

The first couple sessions of physical therapy was pretty nice.  Unlike other treatments that harm your body, this one only helps heal.  Both of my breasts get a massage and cupping (something like a miniature version of ones they do on backs) for a total of 40 minutes to help break down the scar tissues.  There's also a little massaging of the lymphatic system to help drain fluids.  The first session was quite gentle and the therapist was careful to back off when there was pain.  In the second session it was a different therapist and she worked the scars a little harder.  When I winced in pain she acknowledged it with "I know, I know" like she was soothing a child, but didn't really ease up too much.  It was tolerable though, and I'm really looking forward to getting these scar tissues broken down.  I have one or two appointments a week for the next 4-6 weeks so looking forward to seeing some improvements.

Physical Therapy Consult

Three and a half month out of surgery but the internal scar tissues haven't improved (at least to the extent I can tell) and there is still pain when I lift weights or do anything that stretches the scar tissues.  The surgeon sent a referral to a physical therapist to see if they can help.  The initial consult appointment was today.  

The physical therapist examined my scars and tested my range of motion.  My range of motion is mostly fine.  I've been doing some tai chi and qi gong here and there so that likely helped.  But to address the pain and a bit of swelling on the left, the recommendation was getting massages in the area to help with breaking down scar tissue and lymphatic drainage.  It seems on the left, the scar tissue may be blocking that drainage, and thus preventing the swelling from going down.  I was given snippets of textured foams that I could insert into my bra that would help massage the scar tissue when I move my arms.  I was also able to schedule some appointments to get the area massaged professionally.  They would also teach me how to do it so I can do it on my own as well.  I was looking forward to getting a break from doctors' appointments, but I really want the scar tissue to heal and pain to go away sooner rather than later.  Hopefully these physical therapy appointments will help.

Radiation Follow-up & Debrief

Almost 4 weeks out since my last radiation treatment, the skin is doing much better compared to few weeks ago.  Much of the pain is now gone, and there's just the occasional irritation that feels like a band-aid being peeled off in places, particularly in the back where the skin got exposed to the sun because I wasn't made aware the treatment area would extend so far back.  There's is still discoloration of the entire treatment area, with the worst of it being under the arms.  It could take years for the skin to return to normal, or may never return to how it was before treatment. In any case, the radiation area isn't bothering me as much now and I am having more good days mentally and physically.  I still had a follow-up scheduled though so I went.

Today's appointment was supposed to be a skin check after getting burns from radiation treatment.  My usual nurse was out sick though so I spoke to someone who didn't seem to specialize in breast radiation.  She didn't actually check my skin, and I didn't really feel like waiting around for a doctor since I felt like my skin is getting better.  The main take away from the debrief I also got was that I need to minimize sun exposure to treated area by using sunscreen SPF 50+ for life.  Good thing I am not a beach person, but I am going to have to be careful being outdoors in tank tops and such.  Yeah, it is a little thing, but there are many of these "little" things and also many big things as a result of going through cancer treatment.  

Aside from the sunscreen warning, I was told I can start using deodorant if it doesn't irritate my skin.  I can also swim and take hot baths eight weeks after last treatment if I'm healing ok.  

The usual process for most folks is to do a telehealth call with the provider a month after the last treatment.  The nurse suggested I go ahead and schedule that call even though I was here today, in case additional questions come up. The doctor still owes me some help in removing the radiation tattoos so I'll bring that up on the call next week.

3-Months Surgical Follow-up

It's been just over three months since my bilateral lumpectomies and there is still pain at the surgical sites on both breasts from scar tissue, or fat necrosis as the surgeon called it.  I am still not climbing or running due to surgical pain, and I'm not swimming due to radiation.  The pain is almost daily, though not all day long. It's worse when I do weight training but hurts even when I don't. The surgeon ordered an ultrasound prior to the follow-up and confirmed that there were no fluid build up that could be drained or other issues.  Although I do seem to be taking longer to heal than expected, she did not think the size of the scar tissue was bad.  She will refer me to a physical therapist at the cancer center to see if I can qualify for a vest that will massage my breasts, which will help break down the scar tissues faster.

My next follow-up with the surgeon is in January.  We will do a mammogram first and then discuss results in that appointment.  If my breasts still hurt in three months, I have the option to postpone the mammogram. I'll likely tough it out and just do it though since I could use more peace of mind.  

I had a few other questions for her, and she listened and answered everything patiently without any attempt to rush me like some of my other doctors do at times.  While I'm sad about the continued pain, I'm happy with how the appointment went.  

Second Oncology Consult

I walked in to my oncologists office and there was about 100 people in the waiting room.  The oncologists see patients with all sorts of cancers so they are always busy, but they were particularly backed up today.  It took more than two hours before I actually got to see the doctor.  

He recalled from my previous appointment that I did not want to do radiation or take the medication, so he was pleasantly surprised that I had finished my radiation treatment and I was now willing to take the medication.  He thought he was going to have a "battle" with me.  With no battle being necessary, he said to start Tamoxifen today and I would see him in 2-3 months for blood work and follow-up.  He seemed eager to leave it at that but oh no.  I waited two hours to see him and I had questions. 

I learned from my radiation experience that the doctors do not necessarily prepare you for the worst case scenario.  I wanted to know all about the bad side effects of Tamoxifen.  Hot flashes and vaginal dryness is all he would tell me though, since that's what most women seem to experience.  There are women in the Tamoxifen support groups on Facebook with all sorts of horrible side effects from Tamoxifen, but he didn't go into any of them.  Soon as I stopped talking he says, "I'll see you in two months."  I wasn't done yet though.

Given I didn't do the sentinel node biopsy, I was concerned about potential spread.  I asked about an MRI or PET scan, but since I had early stage breast cancer he did not think they were necessary since they are not good at picking up microscopic cancer cells.  If there was anything in the lymph nodes, the radiation would have taken care of it... supposedly.  I'm glad he was so confident I'm in the clear, but I would rather have had some tests done to confirm it.  He again said, "Ok, I'll see you in two months."  LOL... this doctor really does not want to spend time with me.  

My next question for him was what happens going forward.  I'll see him in January (he's taking December off it seems).  Then again every four months for couple of years, and then every 6 months until the five year mark.  Blood tests at each follow-up to make sure things like my liver and kidney functions are good.  

I had a few other questions before I finally decided to let the doctor go.  The whole discussion with him probably was like 5-10 minutes after a two hour wait.  It used to be that even though we paid a lot for health care in the US, it would at least be good care.  I'm starting to feel like health care in this country is slipping while prices keep rising.  

Resources

When I first started my breast cancer journey, the doctors and the internet were my only resources.  I was assigned a nurse navigator from the cancer center from the start but she never really seemed to answer my questions so I stopped reaching out to her.  I managed somehow these past few months without much else.  A week or two ago though, I got a call from a registered nurse at my insurance company who is my care manager or something to that effect.  She had been available to me from the beginning to help answer any questions I have or find the care I need.  She was actually helpful in pointing out that my oncologist's office offered a triage hotline when I mentioned abdmonial pains to her.  That allowed me to get a abdominal CT a week later, which didn't find anything but gave me some peace of mind. Also around the same time as the call from my insurance, I got a call from someone at the company who managed my workplace benefits.  She offered something similar.  I was surprised both of these services were available to me but I'm only just now finding out - 4 months after my abnormal mammogram results.  I was already done with the two major treatments so the calls came a little late.  I wanted to post about it though in case others in similar situation are looking for resources to guide them in their own journey.  Maybe your insurance or workplace offers similar benefits.  

I did join a few support groups on Facebook related to cancer.  Many women post on these sites asking questions about symptoms or what to expect.  Unfortunately you get a few commenters promoting alternative medicine (or just plain BS) but I think majority of the responses are from actual people who have gone through treatment or about to.  It was interesting to read some of the posts and comments, if nothing else to confirm what you've been reading online.  One thing I learned is that many women who have issues are the ones posting in these online support groups. It's easy to think from all of the problems these women have that you will have them too.  That is not necessarily the case.  For example, many women do have bad side effects from taking Tamoxifen.  But many more do just fine on it and folks have pointed that out in these groups.  I still worry about the side effects of Tamoxifen, especially after having issues from surgery and radiation, but I have decided that I will at least try it to see if I am one of those people who can tolerate it.  

Obviously it's easy to google and find resources on anything online these days.  For convenience though, here are couple to start: National Breast Cancer Foundation, Susan G. Komen.

Every Women's Journey is Different

I want to remind everyone that my own experience in no way reflects what the millions of women diagnosed with breast cancer globally each year go through. Not all breast cancers are the same and available treatments vary.  A women's response to treatments and its side effects also vary.  Factors such as a woman's emotional well-being, life stage and responsibilities, and available support systems can impact her life during treatment.  Her socioeconomic status may affect her quality of care, and her cultural background may influence her decision-making on treatments.  Every women's breast cancer journey is different.  It is just something to be very aware of whether you have the cancer or you are supporting someone who does.

Acupuncture

I started weekly acupuncture treatments late July for stress management, but I also hoped it would help improve my immune system and help me heal faster.  I figured a treatment that has been around for 3000 years can't be wrong.  Also, my insurance covers up to 20 sessions, so it was no cost to me.  However, I don't enjoy getting poked with needles, and I don't particularly find it relaxing like some people do. Afterward I am quite fatigued, which seems to be a relaxation or detoxification response.  Generally I felt ok after a day or two after.  I'm inclined to think it is helping, but taking an hour out of the week on top of all my other appointments have been kinda difficult.  All I really want to do now is stop going to see doctors.  Unfortunately I still have bunch of follow-ups with the surgeon, oncologist, and radiation oncologist.  I'm unsure if I will continue with acupuncture.

Anyone Can Get Breast Cancer

This post is just a reminder that anyone, regardless of age or gender, can get breast cancer.  While risk increases with age, more and more younger women are getting breast cancer globally.  It is also possible for men to get breast cancer too.  Those who do not get regularly screened for breast cancer should consider doing the following:

• Familiarize yourself with how your breasts normally look and feel.  Perform self-exams to look for any changes such as new lumps, nipple discharge, or changes in skin texture or shape.
• See a doctor if you notice any concerning changes and advocate for yourself if the doctor won't order a mammogram because you are too young.  Seek a second opinion if necessary.
• Be aware of breast cancer risk factors:
• Increases with age
• Family history
• Dense breast tissue (harder to see on mammograms)
• Early menstruation (<12) and late menopause (55+)
• Having certain genetic mutations such as BRCA1 and BRCA2
• Physical inactivity and obesity
• Alcohol consumption and smoking
• Using HRT after menopause
• Exposure to radiation and chemicals
• Having no children or children later in life 

Having risk factors does not mean you will get cancer though, and conversely, having no risk factors does not mean you will not get cancer. The exact cause of breast cancer is not known.  Anyone can get breast cancer.

Cost of Radiation Treatment

The billed cost of radiation treatments from initial consult to last treatment (25 sessions), excluding any follow-ups, was $37,007.  Of that $18,350 was allowed by insurance.  A 20% co-insurance would be $3670, but since I had already met my out-of-pocket maximum after surgery, my cost for the treatment was $0.

Radiation Burns

By the time I finished treatment a week ago, the area under my arm was quite burnt and charred.  Reaching for anything was painful as it would crack the skin.  Few days later, skin in my armpit had peeled, exposing raw and painful skin underneath.  That was the worst hit area due to the constant friction in the area whenever I move my arm.  No one had warned me this would happen.  Not the tech, not the nurse, and not the doctor.  They all saw it was getting bad and no one thought to tell me my skin could peel and to prepare me for how to treat it.  Given this and all the other mistakes made at the practice, I didn't initially reach out to them. I tried to self treat with triple antibiotic ointment on the raw skin since I didn't know what else to do (I figured lotion and steroids on open would was not a good idea).  I used non-stick pads to keep the area from rubbing on my clothes, but it did not stay in place very well. I saw a dermatologist and also went to urgent care.  Neither helped and the latter turned out to be as useful as a first aid station. Having run out of options, I got an appointment with my radiologist.  I had very low expectations going in but they actually seemed concerned this time.  They gave me Silvadene cream and a very soft dressing that would cover the area better without too much adhesive.  I applied the cream and dressing before leaving and everything felt better already.  Since my skin was doing pretty poorly, I was told I did not have to do the last week of radiation, which was just boosters.  Things improved quickly with the new treatment and dressing, though it will probably be weeks or months before the radiated areas heal completely.  

Needless to say, my experience with radiation was bad.  I think what made it even worse was that I felt like the doctor and the nurse were so focused on treating the cancer and did not treat me as a person and lookout for my overall well-being.  I get that there is a shortage of doctors, but it constantly felt like they did not have the time for me.  I was always being "squeezed" in for extra appointments when needed.  Mistakes were made.  They were reactive more than proactive.  It is done now, and I don't really have any great advice for anyone.  When faced with cancer and other illnesses, the luxury of time to find the best doctor for your care is not always on your side.  Perhaps one can start researching the radiologists while waiting for or in recovery from surgery since the first consult is usually about a month after surgery.  

Other take aways from my own experience:

• I tried Eucerin, Aquaphor, and Calendula cream.  I liked the Calendula cream a lot as it went on light, absorbed quickly, and had a cooling effect.  Eucerin was ok too. I used Calendula cream more when the skin was red and Eucerin more when it was not (early on and after skin started to heal) Using Aquaphor was my least favorite despite many folks in support groups recommending it.  It was thick and greasy, and it's just petroleum.
• Be sure to lotion up a wide area if getting whole breast radiation: your armpit, side, and towards the back (about the lenth of your hand).  I did not realize the radiation went towards my back until few weeks in when it turned red.  This area had also been exposed to the sun on my walks since I was wearing tank tops, which is a no-no.
• Running cold water over the radiated area after shower felt really nice.  I didn't start doing this until towards the end of the treatment, but it felt like it helped.  Especially after exercising, it helped cool down the extra heat I generated. I wish I had been doing this from the beginning.
• Don't use anything on the area that can trap heat (oil, waterproof dressings)
• Not everyone gets bad burns, but prepare yourself for the potential and know what to do. It can be days before the doctor will see you even if you are hurting.

Breast Cancer Awareness Month

October is Breast Cancer Awareness Month. I knew very little about breast cancer prior to my own experience.  I had been doing my annual mammograms because that is what you are "supposed to do". Generally, I tend to follow the prevailing medical recommendations. I also understood that early detection is key when it comes to cancer.  Having insurance that covers the cancer screenings (e.g. mammograms, pap smears, colonoscopy) played a key role in me actually getting them.  There was no excuse not to.  Aside from the need to screen, however, I knew nothing.  I had no reason to think I would ever get breast cancer so I rarely thought about it and never looked into it.  

My decision to put together this blog was in spirit of awareness.  Maybe someone who has a recent diagnosis or is at high risk of cancer will be interested in some of the information I post.  If nothing else, it will be a good reminder of what I went through if I want to look back on it for any reason.  It may also be an interesting read for someone in the future who can look back on cancer treatments of our time.  Maybe it will encourage folks to get their recommended screenings if they haven't already.

Neptune Festival - "Run, Run, Run!"

Since going back to work early August, I had felt pretty overwhelmed between work, doctors appointments, treatments, and trying to stay on top of my health.  It really had not been going well at all.  I was mentally and physically exhausted, and I found myself stress eating often.  I had regained the weight I'd lost during the 4 weeks I had off from work after the surgery.  I was not feeling healthy at all.  A week into my FMLA for radiation treatment though, I was starting to feel a little better.  This weekend was Neptune Festival, and I wanted to go see the sand sculptures and other festivities going on at the oceanfront.  I just needed to do something fun, something to remind myself why I'm fighting to live. Coincidentally, a friend reached out and wanted to do the same.  I did not feel too well the Saturday, but I felt I could manage on the Sunday so we went. 

Every year at the festival there is a sand sculpting contest and that was our first stop.  There were many very beautiful sculptures.  There was one in particular though that really spoke to me and was my vote for People's Choice award.  The sculpture was titled "Run, Run, Run!" by sculptors Thomas Koet of USA and Nikolai Torkhov of Russia.  It was less about the artistry than the theme to me, but it did win 3rd place so I think it must've spoke to some of the judges too.  

Life is short, slow down so you don’t waste it! This sculpture is about the busy times in our lives, where we rush, day in, day out just to get through the week. It is so easy to forget to take a breath and try to enjoy our lives but we might miss out if we don’t take a break every now and then.

On one side of the sculpture there was a man hooked up to an IV, wearing a suit and running to work.  First thing that crossed my mind was "That's me!"  I had been trying to juggle work while undergoing cancer treatment, which has been stressful in many ways. I finally came to my senses and took FMLA/STD again starting this week but I wondered what the future holds for me.  What if I don't tolerate my medication well and feel sick all the time?  What if there is a recurrence?  What if I want to live a healthier lifestyle not working at a desk 40 hours a week?  The healthcare system in US is very expensive so health insurance is very expensive.  If I lose my current work benefits and had to go on COBRA for health insurance, it would cost over $800 a month.  I asked my company a few weeks ago if reducing my work week to 30 hours would be possible.  They said "no" - I had to use FMLA.  What happens when FMLA runs out and I get sick again?  I was really disheartened by my company's policy.  Many people probably continue to work even when they are ill just so they can keep their health insurance.  This is no way to live.  Working 40 hours a week is BS.  Having only 3 weeks of PTO is BS.  Working to age 65 is BS.  I need to get out of the rat race asap.

Radiation Week 5

By this week I was getting tired of trying to work while getting treatments. I woke up not feeling well the Monday and decided to take a day off.  By end of the day, I decided I can't go on like this and requested FMLA and STD for the next 5 weeks.  I cancelled my business trip that I was originally looking forward to.  As treatment went on though, I knew it would be tough on my body to try to go.  I had stopped wearing a bra by the second week of treatments and I couldn't imagine going the whole week with it on.  I also had another week of treatments before the trip and things were only going to get worse.  My supervisor is pretty understanding and missing the business trip wasn't going to be a big deal.  Even if it was, the only thing on my mind now was getting through these treatments and getting better. 

By now, my underarm had started burning pretty badly.  Early on, I did not realize the extent of the treatment area and may not have applied the Strata cream or moisturizer properly in some areas.  The burn came on suddenly though and it had gotten painful since the skin under the arm would crack if I reached for anything.  All the radiation doctor offered me during this week's skin check was to put hydrocortisone on it if it itches.  My skin is pretty unhappy, but I went on to finish the 25 days of whole breast radiation.

Radiation Weeks 2-4

During the second week of radiation they took off some of the stickers.  I realized then that they had tattooed me with blue ink rather than the pink as discussed with the doctor (I have fair skin).  I couldn't believe they made such a mistake and again I was upset.  I don't like tattoos and didn't want tattoos but I deemed it as something medically necessary so I went with it.  Then they mark me with a color that would be quite noticeable on my skin.  It would be visible if I wore a bikini (yeah, 50 somethings do wear bikinis) or if I went to a public bathhouse (I visit Japan often).  Between this and the scheduling mistake of last week, my opinion of this practice was getting pretty low.  When I mentioned it to the doctor, she said that she can put in a referral to get them removed after the treatment finishes and skin heals.  Since it can take months to get an appointment in some places I asked for the referral right away.  The next day I got a call from the dermatology office where she sent the referral.  They didn't do tattoo removals or accept new patients.  Another let down from my radiation doctor.  

The second week was a shorter treatment week since Labor Day was Monday.  I stayed on top of moisturizing the area.  I'm starting to see more redness and hyperpigmentation.  Fatigue levels varied throughout the week.  Some days I felt ok while others were a struggle.  Since any time I take off under FMLA would be unpaid (I only have a few hours of PTO built back up after surgery), I tried to make up all hours I missed.  It was kinda tough.  I was also feeling some nausea this week.  The doctor said that the radiation shouldn't cause an upset stomach.  Maybe I ate something bad.

The third and fourth week didn't get any easier.  Skin is getting darker and I'd still have some bad days fatigue wise.  I wanted to keep up with my exercises though, so couple days a week I would go to the gym.  I didn't have time to go to the garden for long walks but on days I didn't go to the gym I would walk around the apartment complex for about 20-30 minutes day and night.  Every day all I could manage was some form of exercise, work, treatment, eat and not much else. I found myself working late a lot of days since I was working on some really challenging tasks. My doctors appointments also weren't limited to the radiation treatments so on some days I missed more work. These last two weeks I had two radiation sessions on the Friday.  The day after those double doses, all I did was sleep all day.   

Radiation Treatment Week 1

On the first day, they made sure things lined up still but didn't do any actual treatments that day.  They gave me my schedule and told me when to come back the next day. My appointment was scheduled for 3:15 but I had to come in 30 minutes early so the doctor can make sure my incision site that I tore open the week before has closed.  

The next day I went in at the time I was told but the folks up front told me my appointment wasn't until 4:15.  There seemed to be some mistake.  I asked if I should go home and come back and they said "no, we'll get you in."  So I went in to change and waited.  The doctor saw me but then I had to wait... and wait... and wait some more until 4:15 when I actually got my treatment.  I was pretty upset.  Work has been busy and stressful, and I was going to have about 5-6 hours of work to make up each week because of the treatments.  My time is valuable, and I didn't have an hour to waste.  I was pretty sure I was told my appointment was at 3:15 and I needed to show up at 2:45.  The nurses also checked though and said my appointment was at 4:15.  I thought maybe I was losing my mind.  Then I go home, look at the written schedule they gave me, and notice that I went at the correct time.  The only explanation was that someone changed the schedule since it was printed and no one told me.  Very annoying and a little concerning.

The rest of the week went a little smoother.  Check-in is usually really fast and I walk myself to the back to change into a gown and put Strata on.  They say to get there about 10 minutes before.  Sometimes I wait a bit, but at other times it goes a little faster and I can be in and out in about 30 minutes.  Foruntately, the cancer center is less than 10 minutes from me.  I hear some people in rural areas drive hours to their nearest facility for treatment.  I don't know how they do it.  I guess you do what you gotta do.

By the end of the first week I started noticing discoloration and hardening of the skin on the nipple.  It was upsetting to see.  My poor booby is going through so much.

Surgical Wound Reopens - Radiation Treatment Delayed

It takes about a week for the radiation oncologist to plan out the treatment and to get insurance approval.  The latter seems to occasionally cause delays, but mine seemed to have gotten through just fine.  I was slated to start radiation treatments later this week.  I had a business trip the week of September 29th, and the goal was for me to finish my 25 whole breast radiation before I leave, and then to come back and do the 5 boosters after I get back the week of October 6.  I was supposed have the practice run on August 21 and then start treatments on the 22nd.  However...

Now nearly 6 weeks out from surgery, I had gotten the all clear from my surgeon on physical activity the week before.  I hadn't resumed my indoor climbing gym membership yet, but I had my rec center membership and was making an effort to go to the gym few days a week.  Up until now I had been sticking to stationary bikes and really easy weights. Although some pain remained at the surgical site due to fat necrosis in the area, I was starting to feel pretty good and wanted to start doing more so I can get back to climbing.  Yesterday, I decided to try the elliptical machine.  Then after that I decided to try out assisted pull-ups and dips.  Big mistake.

I pulled my back muscle a little but that's not the problem.  I ended up busting open the surgical site on my outer right breast.  This was the surgical site for the actual cancer (if you recall I had two other surgical sites that turned out to be benign findings).  Unlike the incision site at the nipple, I had not had any issues on the side so I was startled to see a bit of blood.  It was a tiny amount, but it indicated that the wound had reopened.  I had to go in to see the radiation doctor who confirmed that there is now an open wound.  I had to delay my treatment start by about 5 days, at which time the doctor will check to see if I'm good to go before starting.  They also had to rearrange my schedule so that I would have couple of days where I would go in for two sessions 6 hours apart, so that I could finish my 25 treatments before my business trip.  I was also told to take it easy on my upper body for a while.  I had to be sure not to stretch out that area and do anything that would risk opening the wound again.  I guess I will not be resuming my climbing gym membership just yet.  

Radiation Simulation

 About a week after the initial consult I went in for a simulation.  During this appointment they created a mold of a cushion that I would lay on each time.  They also permanently tattooed three little dots on me so they can use it to align their machine onto me.  They also made a lot of other marks all over my chest with a pen and placed several stickers. They also did a CT scan of my chest area, which they will use to plan out my treatments.  

I also found out during this time that I would need 30 sessions instead of the 21-25 initially told. 25 full breast treatments and 5 boosters that target the area where the cancer was.  I didn't really get a good explanation for the change except that she sized me up incorrectly during initial consult.  

Consult with Radiation Oncologist

My first consult with the radiation oncologist was about a month after my surgery.  The doctor spent some time explaining the role of radiation in cancer treatment.  Radiation treatment to the breast is to kill any remaining cancer cells in the area from surgery.  Although I had a lot of reservations about radiation treatment, I decided to proceed with it since I wanted to reduce the chance of recurrence the best I could.

I had hoped for a targeted treatment where radiation is directed only in the area where I had cancer.  However, since the margins around the DCIS found during surgery did not have sufficient margins, she insisted on a whole breast radiation.  During the consult the doctor estimated I would need 21-25 sessions of treatment.  It would be everyday, Monday through Friday, for 5-10 minutes.  No treatments on the weekends or holidays.  Once a week, on Tuesdays, I would stay afterwards to be examined by the doctor.

The doctor recommended a prescription cream called StrataXRT to put on immediately before each session.  Insurance did not cover this though, so I would have to pay $89 out of pocket.  It's supposed to provide a protective barrier.  I looked it up after getting home and it seems studies show its benefits to be inconclusive.  The doctor also gave me a sample of Eucerin to moisturize the affected area at other times of the day.  Nothing besides the StrataXRT can go on my skin within 4 hours of treatment though.  The treatment area included the area under my arm, so no deodorant use for a while.

I was sent home with a booklet with some information on radiation and side effects.  Nothing in today's discussion or the booklet prepared me for what I went through with these treatments.

First Oncology Consult and Oncotype Result

I had my first consult with an oncologist today and I received my oncotype, which typically takes about 2 weeks to get after surgery. Oncotype DX is a genomic test used to determine the recurrence rate in early-stage hormone-positive (HR+) breast cancer.  It works by analyzing the expressions of 21 genes in a sample of tumor tissue.  The score ranges from 0 to 100, with a higher score indicating a greater likelihood of recurrence.  It also helps determine treatment decisions based on the patient's risk.

If a patient's oncotype score is 15 or less, chemotherapy is not likely to benefit the patient and is not recommended.  A score of 26 or higher indicates chemotherapy is likely to benefit the patient and would be recommended.  An oncotype score of 16-25 is a gray area and the decision to do chemotherapy is made on a case-by-case basis.  My oncotype was 17.  There was no mention of chemotherapy until today, so I was a little shook to find that the possibility of having to do chemo was there all along.  

I got four oncotype results:

1. Node negative
• Distanct Recurrence Risk at 9 years = 5% with AI or Tamoxifen
• Chemo benefit = < 1%
2. Node positive (Premenopausal)
• Distanct Recurrence Risk at 9 years = 7% with AI or Tamoxifen
• Chemo benefit = 2.7%
3. Node positive (Postmenopausal)
• Distanct Recurrence Risk at 9 years = 4% with AI or Tamoxifen
• Chemo benefit = None (<1%)
4. Node Postivie (>= 4)
• Distanct Recurrence Risk at 9 years = 49% 😱with AI or Tamoxifen

Although the surgeon and oncolgist think that it's not likely that my cancer had spread to my lymph nodes, we did not confirm it with a lymph node biopsy.  So assuming a scenario where it may have spread to 1-3 nodes, I would fall into category #2 above.  With a chemo benefit of 2.7%, the oncologist didn't recommend chemotherapy for me.

While I escaped the worst of the treatments, radiation and medication (Tamoxifen) were still on the table.  I still did not want to do either of these treatments.  From what I understood, each of these treatments alone would reduce my risk of recurrence by 50%, so not insignificant.  Without Tamoxifen my recurrence rate is ~15% (it was unclear if that was with or without radiation).  My initial thought was that 15% chance seemed low enough.  I also felt as though I'm a fairly lucky person (ignoring the fact that I got cancer).  Then my oncologist asked, "I know you like to travel.  If you had a 15% chance of crashing, would you get on that plane?" Then he went on to tell me how unplesant metastatic breast cancer is.  Breast cancer typically spreads to the bones, lungs, liver, and brain.  Bone cancer may lead to severe pain.  Lung cancer may lead to difficulty breathing and chest pain. Liver cancer would lead to abdominal pain and loss of essential functions by the liver.  Brain cancer can lead to headaches, seizures, and other neurological problems affecting daily function.  All of these would affect a person's quality of life.  I wasn't afraid of dying but I was afraid of living a life of low quality.  Now he had me scared.  While I did not want to do these treatments, I had not ruled them out entirely.  I was going to make decisions on them after seeing the doctors about them.  I had a consult with the radiology oncologist coming up.  The oncologist recommended that I at least do the radiation, and then think on the Tamoxifen. 

Cost of Surgery

My cancer removal surgery was right after my new benefit plan year started so I had to meet my out-of-pocket maximum of $3000 again.  A bummer, but I met that out-of-pocket maximum in one day with surgery and then all healthcare cost after that until next July would be free.  

The claim from the hospital, radiologists, anethesia, and pathology for my surgery was $54,612.  Of that, insurance allowed $28,780.  If I had to pay the full co-insurance on that, it would be about $5,756 but I only had to pay up to the $3000 out-of-pocket maximum.  So, between the diagnosis and surgery, I owe about $5700 out of pocket roughly.  While it's a hefty chunk of change, it is a cost I can fortunately absorb.  I also took advantage of using my Flexible Spending Account and the hospital's interest-free payment plan, which lets me spread payment out over-time.

The above cost included couple of follow-up visits with the surgeon.  There will be additional follow-ups, and potentially other procedures to address some complications from the surgery, that are not included in above.

Anger, Grief, and Stress Management

One of the first feelings I had after diagnosis was not fear, but anger.  I was mad I had cancer.  I was mad that I had to have treatments that would be damaging to me in other ways.  I was mad about living in a society where companies can introduce toxins in our water, food, clothes, and environment for the sake of profit.  I was mad at the influences that led me to an unhealthier diet.  I was mad that work led to stress eating and less time to live a healthier lifestyle.  I was mad at my work's policy surrounding PTO.  I was mad at the costs of getting treated.  I was mad at having to navigate FMLA and disability papework. I was mad I had to give up for a while a lot of things I enjoyed doing like climbing, running, and swimming.  I was just always angry, especially early on.  In addition to being angry, I was stressed all around.  Exercise was usually how I managed stress, but now I needed something more.

I tried couple of things.  The first was Art Therapy.  The Cancer Center where I'm getting treated offers integrative therapies so I signed up for an individual session offered one afternoon.  I just thought creating art would be a nice soothing way to spend some time.  I'm not artistic or do art much, but I like art. I thought someone would guide me and help me make art beyond pre-school level.  I had never been to therapy of any kind and had forgotten that the point of therapy was to discuss your feelings with a therapist.  The session started off with the therapist telling me to draw something specific, like where I want to be if I could be anywhere.  That started off simple enough but then after I finished my drawing I had to talk about it!  I was like crap... I don't like talking about my feelings.  I did anyway since I signed up for it.  There were multiple drawings I had to do, each followed by a discussion.  Part way through, I ended up losing it and started crying.  I guess I had a lot of pent of emotions so once the flood gates were down it just flooded.  The therapist explained I was going through grief over the loss of health and other things in my life.  I needed to allow myself to grieve and be kind to myself.  In some ways, letting out the pent up emotions was good.  I didn't really like the process and what it took to do so though.  I was just glad this was an individual session so I didn't have to cry in front of bunch of people.  While I think it is perfectly acceptable for others to do so, I have difficulty being vulnerable.  I wasn't prepared to do this two days in a row and cancelled the group music therapy I had scheduled the next day. But I do think this session helped.

The next thing I tried was acupuncture.  More on this later.   

I think the thing that really helped the most was taking time off of work.  Even if I enjoyed the work I did, it was still stressful at times, and took up a lot of my time.  Not working has allowed me to rest more, spend more time walking outdoors, and doing other things that brought me more joy.  The stress of treatment remains and stress from work would return when I go back to work. After a while though, I decided I don't want to be angry anymore and let that feeling go. 

Post Surgery Recovery

You are allowed to shower the day after the surgery.  The main restriction post surgery is that you cannot lift more than 10 lbs (about the weight of a gallon of milk) for about two weeks following.  They also want you to wear a snug bra 24/7 for a while to hold everything in place.  

After a few days they encourage you to start walking daily.  I had a membership at the Norfolk Botanical Garden so that became my favorite place to walk.  As someone who hates the heat though, walking outdoors in Virginia summer wasn't always a pleasant experience.  In addition to the garden, there was a nearby park with shaded trails so I walked there quite a bit also.  I walked about 3 miles almost daily.  I also had a membership at the Virginia Beach recreation center.  After about a week or so, I spent about 30 minutes on the stationary bike periodically on days when it rained or was too hot to walk outside.  I don't think I was supposed to just yet though.  

All of the walking had me feeling better, and I noticed I don't stress eat sweets when I am not working. I noticed I was starting to lose a little weight like I wanted.  Overall I felt ok, but I wasn't healing as well as I thought I would.

I had a lot of complications from my surgery.  I had three incisions sites for removal of multiple tissue samples.  Outer left breast, under the right nipple, and outer right breast.  About a week after, I noticed hardness around the two outer incision sites.  I either had seromas or fat necrosis.  The surgeon thinks it's the latter.  Both of these can take months to heal.  Mine are pretty sore, and laying on the sides was not possible.  I fortunately had an adjustable bed base that let me incline the head of the bed up some.  That helped me sleep on my back.  It also helped that I had a soft bed. In addition to the fat necrosis, the incision site around the nipple wasn't healing well. It would seep blood from one edge so I had to put a small piece of non-adhesive pad on it to keep my bra from staining. Something they used during surgery irritated my nipple also and it turned parts of it black.  I was worried my nipple was necrotizing and at one point told a friend I thought my nipple was going to fall off.  It didn't.

Pain for the most part was tolerable.  They give you some reusable ice packs which I used quite a bit the first week.  I only took few of the oxycontin pills they gave me.  It was mostly at night to help me sleep.  The pills make you drowsy and you can't drive while on them so I avoided taking them during the day.  

The first follow-up after surgery is usually about a week.  For a lumpectomy, the average time a woman takes off is two weeks.  Some women go back sooner, others later.  In my case, it was a bit more complicated than the typical lumpectomy due to multiple incision sites, locations of the lumps, and the amount of tissue taken.  I wasn't ready to go back to work after two weeks so I extended my total time off to 4 weeks. During that time I had two more follow-ups due to my nipple continuing to bleed into the third week.  The doctor then told me to put antibiotic ointment on it and that seemed to help the wound heal faster.  

Pathology Report

I got the pathology report back and had my first follow-up about a week after surgery. The surgeon took five tissue samples during the surgery on the 8th:

1. For mass on the left breast near chest wall
2. For biopsy of tissue on the right behind the nipple
3. For the cancer on the right 
4. Additional tissue next to cancer towards the outer part of the breast
5. Additional tissue next to cancer towards inner part of the breast

Diagnosis

1. On the left, there were 3 fibroadenomas (largest 5 mm) and additional benign findings, including two intramammary lymph nodes.
2. On the right behind the nipple, they found sclerosed intraductal papilloma (1 mm) negative for atypia and malignancy.
3. The cancer was as expected (IDC and DCIS).  The size of the tumor was now 1.6 cm.  Did it grow 2 mm in two months?  Or was it just the measurement from imaging being off?  I don't know.  They also found 1 benign intramammary lymph node. The report was hard to understand, but my surgeon says we got clear margins here, which is typically 2+ mm.
• What they previously thought was a satellite site was actually the intramammary lymph node.
4. In additional superior margin, finds were benign.
5. In additional medial margin, they found more DCIS. For this, margins were less than 1 mm.

Based on the size of the tumor alone (< 2 cm), I would be considered stage 1.  But since I didn't do lymph node biopsy, I cannot be 100% certain there has been no spread.  

Given that the DCIS found in additional medial margin didn't have the standard 2 mm margin, the doctor gave me the option to have more surgery to get better margins.  She said that some doctors think it is not necessary to have full 2 mm margins for DCIS, while others may.  I was having more complications than I expected from the first surgery so I couldn't imagine doing this again.  I opted not to have additional surgery.

FMLA and Short-term Disability (STD)

Most women take some time off after surgery for recovery.  In America, some employees are covered by the Family and Medical Leave Act (FMLA) which lets you take 12-weeks of unpaid, job-protected time off for medical reasons.  I also had short-term disability (STD) insurance offered by my company so I used that in conjunction with FMLA.  I didn't understand my benefits that well in the beginning though so I had to spend a lot of time researching and talking to the benefit coordinators to figure things out prior to surgery.  Having to deal with administrative work such as filing claims, paying bills, etc. on top of working and going to numerous medical appointments added to the stress.

There is intermittent and continous FMLA. Intermittent is used if you only need periodic time off of short duration.  Continuous FMLA is used for a chunk of time off with no break in between.  Policies vary, but my STD works only with continuous time off.  There is a 7 day elimination period where you do not get benefits, and after that it pays out 60% of my salary.  So if I took 2 weeks off, I would not get paid the first 7 days from STD but would the second week.  When taking FMLA and not getting paid STD, such as during the elimination period, I am forced to use my paid time off (PTO) by my company if I have any.  Otherwise I would be on unpaid FMLA.  In some states you are protected from having to use your PTO during the elimination period but not mine.  The company will tell you that the policy is in place so you can get paid.  Don't be fooled.  This is just a way for the company to extract more working time out of you once you are back from FMLA.  They don't want you taking vacations after you've just been out on medical leave.  

My company uses Prudential to manage their short and long-term disability benefits.  While it was a little frustrating in the beginning to figure things out, overall, working with them has been a positive experience.  The agents are relatively easy to reach by phone (minimal phone tree input), are polite, and my claims often got approved a lot quicker than the 10 business days they say it can take.  

Surgery

My surgery day started early at radiology.  Since I had additional, unchipped masses that would be removed, the radiologist had to stick wires in my breasts to mark their locations so the surgeon can find them.  Sounds pleasant doesn't it?  I think that was maybe the worst part of the day.  More numbing injections that hurt, and some discomfort as they try to place the wires in.  This took a little longer than expected though because they couldn't find the mass behind the nipple.  In the end, they placed no wire there, but I was told the doctor would still take tissue for biopsy.  After the wires are placed, they do a gentle mammo to get images, and then wrap you up.  Then off to the hospital near by (separate facility) for the actual surgery.

Since surgery is done under general anesthesia, my boyfriend took me to the radiology appointment and surgery.  Once checked in and they got me hooked up to IV in bed, there was going to be some waiting so  I sent him home.  We lived close to the hospital and there was no point for him to wait.  He would get a call once my surgery is done.

I thought I'd go right into surgery but there was a lot of waiting.  They get folks to come couple hours before surgery in case they can get you in sooner.  I guess each operation doesn't go like clockwork.  Lumpectomy of a single mass normally would take 45 minutes, but given I had multiple sites to remove, it took about an hour and a half.  I don't remember a whole lot after the surgery, but they sent me home around 3 or 4pm with some oxycontin for any pain.  I took one after eating a small meal and ended up going to bed pretty early like around 7.  I was pretty wiped out that night.

Cost of Diagnosis and Insurance

Everyone knows healthcare costs in the United States is expensive.  It is difficult to fathom the financial hardships that folks with serious medical issues face without good insurance.  I feel fortunate that I had reasonable insurance through work.  My plan was Anthem Blue Cross Blue Shield's High PPO plan.  Despite having coverage through the VA, I opted to maintain health insurance in the private sector since I was unsure when I may need more care than what the VA can offer.  (Note: My health insurance was registered with the VA so if I did receive care with the VA, they would bill my insurance to recoup costs.)  The plan deductible was $500 with an annual out-of-pocket maximum of $3000 for in-network services.  For out-of-network, the deductible is a separate $750 with out-of-pocket maximum of $4500, but I don't recall ever having to use out-of-network services.  My coinsurance was 20%.  The main downside of my plan was that the benefit year went from July 1 to June 30th instead of the more common January 1 to December 31.  The timing was such that the diagnostics and treatments would span two benefit years, causing me to hit out-of-pocket maximum twice.  Once you hit your out-of-pocket maximum though, the plan pays 100% of covered services thereafter. 

Although the cost likely varies between hospitals and whether or not you have insurance, I thought I would provide a sample of what the doctors would bill the insurance.  This post covers the cost of just the diagnostics performed since May.  Between May and June I had 9 total visits that included the initial mammogram, follow-up mammogram, ultrasound, MRI, and surgical consults.  A total of $36,207 was billed to my insurance. The insurance in-network contract allows $11, 234 to be billed for those services.  I paid $1671 between copays and coinsurance.  The most expensive service was the biopsy which came to $959 out-of-pocket for me.  Between the hospital and radiologists, over $10,000 was billed to the insurance for the procedure that took about an hour.  If you look at the claim details, one of the line items was treatment room and observation for like $4000.  My thought was "what observation"?  They sent me right home after the procedure.  Out of curiosity I asked the billing department of the hospital about this line item.  Their response?  "We bill that because we can."  One of many reasons why health insurance costs so much in the U.S.

Although health care can be expensive, the Affordable Care Act (ACA) requires most private health insurance plans to cover recommended preventative services without any out-of-pocket costs.  If you have insurance, your annual mammogram (if over 40) should be free to you.  If you do not have insurance, organizations like National Breast and Cervical Cancer Early Detection Program (NBCCEDP), Planned Parenthood, and Susan G. Komen Foundation can help women find financial assistance or programs that cover the cost of screening.

For those of you on the market for insurance or considering a change in plan during open enrollment, there is a lot to consider.  Those who are young and healthy could do well with a high-deductible health insurance with Health Savings Account which offer triple-tax advantage (tax-deductible contributions, tax-free growth, tax-free withdrawals).  Health Maintenance Organizations (HMO) usually offer lower cost premiumes but with some restrictions on who you can get care from (i.e. only in-network).  Preferred Provider Organization (PPO) costs higher, but offers more flexibility in which doctor you can see.  There are also different levels of each type of plans usually, with the most expensive option usually having lower copays, deductibles, co-insurance, and out-of-pocket maximum.  Insurance options vary by employer and state marketplace.  Everyone's needs are different, but I would encourage anyone without medical insurance in the U.S. to find coverage at the next opportunity.  No one expects to get seriously hurt or sick but if you do, you want to be able to get the best care possible without worrying about going bankrupt.  If your employer does not offer insurance, check out healthcare.gov to browse plans and costs.

Telling People

The first person I told my diagnosis to was my live-in boyfriend.  It was simple and there was no drama since the prognosis was good.  If it was the other way around I probably wouldn't be anymore worried than he was.  I'd probably been more worried about whether he could stay on top of his appointments and finances. 

The day after the diangosis I rode with my brother and his wife to visit my other brother several hours away for a long weekend.  We were visiting for our niece's high school graduation.  I thought about telling my brother and wife on the way there but it didn't seem like a conversation to have in a car.  I knew I wasn't going to mention this once there since it was meant to be a celebratory weekend. I couldn't bring myself to tell them on the way home either. It took me about 3 weeks after diagnosis to tell my brothers and dad.  I wanted to have more information like the surgery date before I told them.  My mom thankfully lives overseas so I did not have to burden her with the bad news.  She would just worry so I chose not tell her.  My brothers, their families, and dad took it well.  I know they are there for me if I need anything, but there really wasn't much that I needed, and what little I did need my boyfriend could step in.  

Telling some friends seemed easier than telling other friends. I am not sure why.  One of the first friends I told was one who had a family history of breast cancer.  I think I wanted to know what she knew since I knew nothing about breast cancer when I was diagnosed.  I told another friend who had a history of another type of cancer.  There I think I was seeking to connect with someone who have been through something similar.  I also told friends I saw in person regularly since I wanted them to understand if I could not hang out like before. I told few others who were remote if they ask how it's going or how I'm doing.  There are some friends I feel like I should let know, simply because they are good friends, but I didn't.  I had mixed feelings about telling friends.  Partly because I didn't really know what good it would do other than to serve as a reminder to get their screenings.  Partly because I didn't want to worry people.

Work wise, I decided to tell my boss once I had a surgery date.  I asked him to let the rest of the team know while I was out as I didn't think I could talk about it in front of the team.  I had been doing really well at work and had so much potential in this new team that I had just joined in March of this year.  Unfortunately, this diagnosis was likely to change my ability to operate at the same level as before, and I wanted to set expectations.  

  

Second Surgical Consult

Although I had a few telephone calls with the surgeon since the initial consult, I decided to go see my surgeon in person again to discuss my surgical plan.  I wasn't entirely sure what was happening.

Since biopsy of the two new masses could potentially be inconclusive, it was suggested that they would just remove them along with the cancer that had already been identified.  I agreed.  Even if they were benign, I've had a few cysts elsewhere in the past that got infected and needed surgical removal.  I don't want any surgeon not specializing in breasts to have to do any sort of emergency surgery if something like that were to happen in my breast.   

What I couldn't agree on was the lymph node removal under the arms on the right.  Standard practice for lumpectomy (and I think mastectomy) is to identify the sentinel nodes (the first nodes in the lymphatic system that the tumor is likely to drain into) and remove them so that they can determine if the cancer cells have spread there. If so, the treatment plan could change. Typically there's 1 to 3 sentinel nodes, but there could be more. The surgeon couldn't tell me exactly how many she was going to take. I was very concerned about the lymph node removal because of the increased risk of getting lymphedema.  I had grand plans in my life and didn't want to worry about every animal scratch or bug bite on my arm causing lymphedema. Just like I didn't want radiation or meds, I didn't want lymph node removal.  I was going for the minimally necessary approach.  There was also the chance that if the left mass turned out to be cancer, I would have to go back in for lymph node biopsy on that side.  I figured if the left mass was cancer I'll go back for lymph node biopsy on both sides.  The doctor wasn't thrilled, but she agreed not to remove it during this surgery.  However, if my oncotype came back high (20+), she said I should come back for the biopsy regardless of what's going on in my left breast.  I didn't know what an oncotype was but I said ok. 

So, the final plan was to remove 4 masses:

• The cancer (R)
• The suspected satellite mass near cancer (R)
• The mass behind the nipple (R)
• The mass near chest wall (L)

Genetic Testing

My surgeon asked in our first meeting if I would like to be tested for the breast cancer genes.  This isn't something that is automatically done since insurance does not always pay for it, and there is a risk that in the future genetics could be a factor in your insurance coverage or premiums.  I think knowing is quite important though so I chose to do it.  The results take about two weeks and I got mine today.  I had no family history of breast cancer, so I suspected it would come back negative, and it was a relief when it did.  If it had not, I may need to reconsider my treatment, such as doing a full mastectomy instead of partial.  It was also good to know it was something my three nieces wouldn't have to worry about.  New genes linked to breast cancer are periodically identified over time, but given today's knowledge it seems we're in the clear.

See https://www.breastcancer.org/genetic-testing for more information on breast cancer genetic testing.

Pathogenic Mutation(s): None Detected
Variant(s) of Unknown Significance: None Detected
Gross Deletion(s)/Duplication(s): None Detected

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SUMMARY

NEGATIVE: No Clinically Significant Variants Detected

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INTERPRETATION

• No pathogenic mutations, variants of unknown significance, or gross deletions or duplications were detected.

• Risk Estimate: low likelihood of variants in the genes analyzed contributing to this individual's clinical history.

• Genetic counseling is a recommended option for all individuals undergoing genetic testing.

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Genes Analyzed (77 total):

AIP, ALK, APC, ATM, BAP1, BARD1, BMPR1A, BRCA1, BRCA2, BRIP1, CDC73, CDH1, CDK4, CDKN1B, CDKN2A, CEBPA, CHEK2, DICER1, ETV6, FH, FLCN, GATA2, LZTR1, MAX, MEN1, MET, MLH1, MSH2, MSH6, MUTYH, NF1, NF2, NTHL1, PALB2, PHOX2B, PMS2, POT1, PRKAR1A, PTCH1, PTEN, RAD51C, RAD51D, RB1, RET, RPS20, RUNX1, SDHA, SDHAF2, SDHB, SDHC, SDHD, SMAD4, SMARCA4, SMARCB1, SMARCE1, STK11, SUFU, TMEM127, TP53, TSC1, TSC2, VHL, WT1 (sequencing and deletion/duplication); AXIN2, CTNN1A, DDX41, EGFR, HOXB13, KIT, MBD4, MITF, MSH3, PDGFRA, POLD1, POLE (sequencing only); EPCAM and GREM1 (deletion/duplication only).

Abnormal Pap Smear

There are a lot of doctors appointments when you have cancer.  That doesn't mean you stop seeing your other doctors for non-cancer issues.  I still go to my bi-weekly appointment to get allergy injections.  I also had my first cervical cancer screening (pap smear) in 3 years scheduled for today and I did not want to put off this screening. Unfortunately, the result came back abnormal. It's bad enough I already have one cancer.  The last thing I needed to hear was that I may have another.  The gynecologist tried to ease my mind by telling me an abnormal pap smear does not necessary mean cancer.  Follow up biopsies of the cervix and endometrium fortunately did come back negative.  Still, I have to wonder why the pap smear came back abnormal.

It seems to be common for those who have had cancer to worry that any new pain or discomfort is a recurrence or another cancer.  My boyfriend jokes that I've turned into a hypochondriac.  Breast pain in new location? Must be another cancer brewing.  Pulled calf muscle?  Maybe I have a tumor growing there.  Knee pain?  Back pain?  Headache?  Abdominal pain?  Cancer. Cancer. Cancer. Cancer.  You know it is more likely to not be cancer, but once you draw the unlucky straw of having cancer once, it's always going to be on your mind.  I hope in time, after I regain health and stay healthy a while, the anxiety will lesson.

MRI

The surgeon wanted to do an MRI prior to surgery to make sure nothing was missed in the mammogram and ultrasound.  For breast MRI you lay face down and only your chest is scanned.  It wasn't a big deal.  I was told I could turn a hint of blue over the next 24 hours from the contrast dye but that didn't happen to me. Unfortunately though, the MRI found something.  I had a small mass next to my chest wall in the left breast and another small one behind the right nipple.  Is the one behind the nipple the same breast cancer or another?  It seemed unlikely that the cancer on the right would jump all the way to where it is on the left, so if it was cancer, it would likely be a new one.  Great. Fantastic.  Potentially more cancer.  Argh.  The ultrasound tech who further examined those masses seemed optimistic though that they were benign.  No way to know for sure without a biopsy though, and the location of the masses would make biopsy difficult and/or painful.  

 

First Surgical Consult

Surgeon: "Do you know why you are here?"

Me: "Because I have breast cancer."

Surgeon: "Good.  Not everyone understands they have been diagnosed as cancer."

I guess it doesn't surprise me that not everyone goes into their first consult with a solid understanding that they have cancer.  The lab results aren't easy to understand.  I had to google all the key words to put the picture together.  By the time I got a call about my biopsy results I already figured I had cancer.  I can also imagine that even if someone was clearly told they had cancer, that one could be in some sort of denial.  

After ensuring I knew I had cancer, the surgeon went on to explain a number of things about breast cancer. Not really knowing anything about breast cancer, I found the information helpful, though it was a lot to absorb.  I had both lumpectomy (aka partial mastectomy) and full mastectomy as an option. It seems there are many women who are keen to get their boobs chopped off upon finding out about their diagnosis. I was not one of them.  I like my boobs.  I don't want fake boobs and I wasn't ready to lose the ones I have.  I had no doubt I wanted a lumpectomy.  The doctor also explained that the rate of death is the same either way.  With lumpectomy, there is a higher rate of recurrence since we are leaving breast tissue behind.  With mastectomy the chance of recurrence is lower, but not zero. However, since there are no regular mammograms or screenings after, by the time someone gets a diagnosis of a recurrence, they are already in more advanced stages of the cancer.  

The surgeon also explained to me about the standard treatment course for my type of breast cancer.  After surgery there would be radiation treatments, followed by medication to prevent hormones from feeding cancer.  The radiation treatment is intended to kill remaining cancer cells in the breast.  The medication is to treat cancer systemically to prevent metastasis by starving the cancer cells.  Everything I've read up until now on these treatments sounded like there could be many unpleasant side effects.  I didn't want to do either of these.  I just wanted to do the surgery.

Biopsy Results

 Well, there it is.  It's cancer.  

• Invasive ductal carcinoma (IDC) of no special type, Nottingham grade 2-3.  
• Focal ductal carcinoma in situ (DCIS), intermediate nuclear grade, with associated focal necrosis.
• Breast biomarker studies:
• Estrogen receptor: Positive (moderate staining, >90%).
• Progesterone receptor: Positive (strong staining, >90%)
• HER2/neu: Negative (score 1+)

Finding was malignant, concordant.

The hospital sends lab results to you in the patient portal as soon as they are available. While I waited for the follow-up call I spent a lot of time googling the terminologies in the lab results. None of it sounded good.

Here is what I have learned (keep in mind I'm no doctor):

• IDC is the most common type of breast cancer, originating in the milk ducts.
• "Grade" determines aggressive potential of cancer. It's rated on scale of 1-3 with 3 being the worst.
• DCIS is a non-invasive form of early stage breast cancer known as stage 0. It is common for IDC to have an accompanying DCIS component.
• Estrogen and Progesterone receptor positive (HR+) means my cancer feeds on these hormones. Majority of the breast cancer cases are HR+. Women with this type of cancer cannot take birth control pills or get hormone replacement therapy (HRT) when they reach menopause.
• Since I am HER2 negative, I don't know much about this indicator. It seems HER2 positive cancers are more aggresive.

Next step: Surgical referral.

Biopsy

The ultrasound guided biopsy was under local anesthesia.  The anesthetic injection was the most painful part.  The needle they use to collect the samples can be felt as a tug occasionally.  Not very comfortable.  I felt upset that I had to go through something I felt was invasive.  I cried a little.  

During the biopsy the doctor places a titanium clip in the location of the biopsy.  The reason for this is two fold.  First, if biopsy results showed the tumor to be benign, doctors reviewing future mammograms will know the mass has already been tested.  Second, if biosy results showed malignancy, thus requiring surgery, the surgeon would be able to find the mass more easily with the clip.

The unforunate part of biopsies is that it takes like a week to get biopsy results since they have to see in the lab how fast the cells grow/split over time.

Additional Imaging

I went in for additional mammogram and ultrasound images today.  One thing I noticed is that they squeeze my breasts a lot harder during mammograms here than they did at the VA.  The first mammo and this one was painful.  I hated it.  I swear society likes to torture women in many ways.  

After the imaging the radiologist came and talked to me.  He gave me some bad news.  I had a highly suspicious mass that would require a biopsy.  I asked many questions, one of them being how likely it is to be cancer in his opinion.  His response was "I would be very surprised if it was nothing."

The mass was 1.4cm in my right breast.  There was also a probable satellite mass of 0.4 cm approximately 1.7 cm away from the dominant lesion.  I was told that the satellite mass would not be biopsied but treated the same way the larger mass would be.  

The radiologist went on further to say that it looks like we caught it early, and I should be just fine.  He told me of many women in his family who went through breast cancer and is fine.  While the thought of having cancer was scary, his words were reassuring and appreciated.

From what I understand, they move pretty quickly at the breast center.  From time of abnormal mammography to surgery is typically less than two months.  As much as I appreciated the VA, somehow I couldn't see them moving as quickly.  As wonderful as government provided healthcare is for those who have no alternatives, the system may not always be able to handle the volume of patients in a timely manner.  I was glad to have gotten my screening in private sector this year.

Abnormal Results

The next day I got a message from the breast center that my mammogram results came back abnormal.  I needed to go in for additional imaging.  Some how I got the impression that it was something they usually do for women who get their images done for the first time at the center.  I also have dense breasts, which could also explain the additional imaging.  My view on corporate greed in America was also such that I wondered if they were just trying to make more money off of additional imaging by keeping thresholds low.  After all, my mammogram the previous year was normal, and I was fairly healthy.  At this point I was like, "No way.  I don't have cancer."  But, somewhere in the back of my mind I knew something was wrong.  1.2 cm potentially spiculated mass right breast.  I didn't like the sound of that.

Mammogram

I had my annual mammogram today.  I am 50 and have been getting my mammogram almost every year since turning 40.  I had one almost exactly one year ago which was normal.  

This year I decided to do my mammogram at a nearby cancer center five minutes down the road for me.  The last couple of screenings, however, were done at the Veterans Affairs (VA) hospital in Hampton, Virginia.  I couldn't get a Primary Care Physician (PCP) in the private sector when I first moved to Virginia Beach, so I drove the 30-minutes across the Hampton Roads Bridget Tunnel (HRBT) to the VA hospital.  The HRBT is notorious for its traffic, and during rush hours, the drive across can be an hour or more.  I usually took time off of work to go to my appoints in middle of the day.  Driving to the VA hospital for visits was not fun, and I was happy to be doing this year's mammogram closer to home.  Little did I know how much time I would be spending in that building over the next several months.