Radiation Fibrosis and Pain

 I have been mentioning pain in my last few posts, so let me summarize the types of pain I have been feeling in my breast and chest:

1. Scar tissue - This pain comes from the scar tissue at surgical sites.  Usually comes when working the muscles near the scars on my outer breasts.  Almost any upper body exercise I do utilize those muscles.  The manual therapy I have been getting hasn't softened the scar tissues as much as hoped.  It does not seem to be uncommon for internal scar tissue to take a long time to heal.  
2. Nerve pain - These are the shooting pains women tend to get after surgery.  Often they are from nerve damage.  I get them a lot in one place, but occasionally will get them elsewhere.  
3. Fibrosis - Over the last few weeks I have noticed that my skin and tissue in the radiated area has thickened and tightened.  Stretching my chest muscles feel like tissue is being torn apart.  
4. Mystery pain - There's an area about the size of my fist in my right chest wall, about 1 o'clock from the nipple.  It feels like someone hit me there with a baseball.  It is more constant than the other types of pain and I find it a little worrisome.  Given my scans were all clear though, the doctors cannot do anything about it.  The hope is it goes away.  

In this post I want to mention radiation fibrosis.  The radiologist never once uttered the word "fibrosis".  Not before treatment, and not even after I mentioned the pain I was having.  Googling tends to return very vague information and a lot of medical journal articles that I don't really discuss things in layman's terms.  What I did find helpful though, were the slew of YouTube videos that discuss radiation fibrosis and how to manage it.  I personally liked the radiation fibrosis videos on this channel: https://www.youtube.com/@breast-cancer-rehab. If you are getting radiation and are not familiar with radiation fibrosis, I would do some research.  I get the feeling radiologists don't like to discuss this with their patients because they don't want to scare them. 

In summary, radiation fibrosis leads to skin and tissue tightening from scarring.  In severe cases mobility can be severely be impacted.  It is important to stretch gently from the beginning to prevent the tissues from losing elasticity completely.  I think exercise also helps get blood flow through the area and promoting better healing.  At least I felt better when I could exercise more regularly than when I'm working.  Massages also help with lymphatic drainage and circulation.  

My case might be considered mild, but the pain is there everyday.  I don't have to take pain killers, but it is uncomfortable and mind my mind is on it often.  All I can do for now is continue with my exercises, stretching, and massages, and then hope that the pain gets better or goes away.  

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.

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.

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.

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.