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.  

 

 

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.  

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.