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.