One-Year Later

One year ago today I had surgery to remove breast cancer.  Six months ago was my last post. For almost six months I didn't have to think about a doctor's visit.  In January I quit my job to focus on my health.  In February I gave up my apartment so I do not have to keep that job.  In March I set off on a trip to cross off some bucket list items.  In late May I came back, and since I no longer have my apartment, I am bouncing around from place to place - essentially a nomad.  I stayed mostly in Virginia Beach though, as I had to start thinking about doctors' visits all over again.  

I no longer have health and dental insurance through work since I decided not to sign up for COBRA.  I signed up for dental insurance through the VA though.  It is a new plan, so I had to get a new dentist.  Due to insurance reasons, when you switch dentists, they will not do the cleaning on the same day as the initial exam even if you have seen a dentist within the past year.  This means switching dentists becomes a two visit ordeal.  Not to mention waits for some dental offices are many months, it will not be easy to get care elsewhere.  Another annoying reality of the American healthcare system.

I am also getting my healthcare through the VA.  Some initial visits are leading to additional follow-up visits, which is frustrating since I am tired of having to arrange my life around these doctors' visits.  Some of the visits are related to my breast cancer.  This past week I had an MRI and a follow-up with my oncologist and surgeon.  While it all went well, I just felt a like another patient they rush through.  I tell them of my concerns, but they can't do anything about it unless it is severe or something shows up on imaging.  Both doctors' visits were like 10 minutes or less.  It felt like a waste of time.  My surgeon mentioned for the first time though, something called costochondritis, an inflammation of the cartilage connecting your ribs to your breastbone (sternum). As of the moment it seems to be the likely cause of the mystery pain I mentioned in my last post.  There does not seem to be much I can do about it.

Going forward, I must continue Tamoxifen until October 2030.  I started getting side effects over the last few months such as missing periods, hot flashes, joint pain, depression and dry skin.  Most of the side effects come ago.  If I had to guess what triggers them, I would say it is stress, though I can't say for certain.  I suppose I should be grateful my side effects are tolerable, as many women do not tolerate theirs.  Yet, when I think about it, I am not happy at what the radiation treatment and the medication has done and is doing to me.  If I didn't do these treatments though and my breast cancer comes back or progresses, I am sure I would regret not doing them.  

My next follow-up will be in January with a mammogram and blood work for oncology, and another MRI in July.  

 

 

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.  

First Mammogram After Surgery

I had my first mammogram since my surgery in July - almost exactly 6 months ago.  No evidence of malignancey.  I've had a lot of pain though, so they also did an ultrasound.  Nothing found there either except the scar tissue and some skin thickening from radiation.  While I had been worried about the pain, I did not think it was cancer so today's screenings only confirmed what I felt - that I'm cancer free as can be.  I say "as can be" only because there is potential for microscopic cancer cells to be somewhere in my body.  I'm not terribly worried about recurrence though.  I did everything the doctors told me to do, and I am still taking the hormone blocker that will starve any cancer cells left in my body.  What I'm worried more about right now is the damage the radiation did to me.  More on that in the next post.

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.