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.