Very torn on radiation decision

bluefin

Hi everyone.

I'm 32 years old and BRCA1+. I was diagnosed with Stage 2A breast cancer in my left breast in November. The tumor was about 3.5 cm, highly necrotic, and a Grade 3. They aspirated a "strange looking" lymph node and it was found to be negative. At that time, the RO was not recommending radiation.

I did chemo before surgery and the tumor actually grew on weekly Taxol to 5.4 cm. So it went from 3.5 cm to 5.4 cm over about a 5 week period. Lymph nodes still looked fine, but now RO began recommending radiation because the tumor was greater than 5 cm and it was concerning that it continued to grow even on chemo. MO switched me to AC, which brought it down to about 1 cm and then I had Carboplatin + Taxotere and that seemed to destroy the rest of the tumor (per MRI).

I had a bilateral mastectomy last month with tissue expanders placed in case I did need to have radiation (otherwise I would have done immediate DIEP flap reconstruction). The path report came back that I had a PCR, and the 3 sentinel nodes they took were all clear of cancer.

I absolutely cannot make up my mind on whether or not I want to do radiation. My RO has good points for why she's still recommending it, and the various studies I have read have gone both ways. I was PR and HER2 negative, but slightly (17%) positive for ER so I will be on Tamoxifen for 5 years. I feel like I don't need to have radiation, and that is making it hard to make a final decision even though there would still be a risk reduction for local recurrence.

My RO quoted a 10% - 15% risk of locoregional recurrence without radiation, down to 3% - 5% with radiation, although that was a loose guess since she doesn't know my exact risk because my case is very unusual. My MO said that the fact I had a PCR put my risk of metastatic disease at less than 5%.

How do you know which decision is the right one?

muska

I would go for second and third opinion

inks

We will never know if our decision is right but we will have make one and live with it. I had a tough decision with radiation too so I saw 2 ROs and since both were pro rads and based on my own research I decided on rads. But I had LVI and multifocal and multicentric tumors. FYI it is normal for BRCA+ tumor not to respond to Taxol ( they could have stopped taxol and gone straight to adrimycin) adriamycin and platinum based drugs are way better for BRCA deficent tumors.

PS if you are BRCA1+ why are you doing Tamoxifen for 5 years? you could do the oophorectomy at 35 years and go onto AIs after that ( they may work better anyways for women 35 and under).

GrammyR

I would get another opinion. I had no BRCA test in 2006 was not offered. However w/the size of your tumor I would likely go w/the RADS too. I had ACT also but mine came back in 2013 then I had RADS w/good result.

bluefin

muska & GrammyR - I should have mentioned that I did have a second opinion (and technically third opinion) and they all recommended rads also. My RO also posed the question to her group and asked some of her RO friends and they were all in agreement to do rads.

inks - My husband and I aren't done having children yet, so I won't do the oophorectomy until about age 40. I just had blood taken today to check AMH levels to see how my ovaries fared during chemo (I was on monthly Lupron).

The part that is making me lean towards yes is that the tumor was very close to the chest wall, about 3mm from the deep margin. Technically had I not had a PCR, they still could have gotten clean margins based on where the tumor bed was (I guess anything less than 1mm they consider close margins), but 3mm seems awful close for my comfort. They did also remove the fascia, but my understanding is that it's a pretty thin membrane so there could still be some miniscle breast cells on the chest wall.

I'm mostly worried about long term side effects of the radiation. I think part of it may be excess paranoia in addition to just wanting to be done with treatment.

inks

Bluefin - did you see that they changed the recommendation for oophorectomy for women with BRCA1? It's at age 35 now. http://www.asco.org/press-center/large-study-shows-preventive-ovarian-surgery-brca1-mutation-carriers-should-be

This topic is close to my heart since one of my relatives was dx with stage III ovarian cancer while I finished my chemo (her mom passed away from ovarian cancer 6 years earlier). And there was a study that oophorectomy improves breast cancer specific survival even in TN women with BRCA1.

My gynecologic oncologist joked that since I kept my uterus I could still be a surrogate - but I never researched if that is infact true.

I have cosmetic changes to my reconstructed breast from radiation and I will have additional surgery to fix that this fall. Since your cancer was on the left you may have more side effects.

bluefin

inks - Thank you for sharing that study. When I had talked with the genetics counselor and MO, they had said 40 so maybe they haven't seen it? I sent it to my MO and will discuss with him when I see him later this month. I have my first ovarian screening ultrasound next week along with the CA125 blood test, although both of which I understand are not great screening tools but that is all they are able to do.

I actually did ask that question about keeping my uterus and being able to do IVF for a pregnancy without ovaries, but I was told without ovaries your body doesn't have the estrogen necessary to sustain a pregnancy.

This would make me really sad if I do have to do this at 35. My last pregnancy ended in the loss of my second son shortly after birth, and that was 8 weeks before my breast cancer diagnosis. Thankfully we do have a wonderful almost 3 year old at home, but my husband and I were really hoping to have more of our own.

Jazzi

... I agree with 2nd and 3rd opinion.

I believe I made the right decision to have radiation, but it is not without complications. I had a lumpectomy and after my 2nd reconstructive surgery, I believe I was 18 months out from my last radiation treatment, to fill in the indentation with my own fat failed after 2 months. The skin broke down from where I had the radiation treatments and a hole developed. I had to pack this wound day and night for 6 months, and still work. My surgeon feels that perhaps he should have allowed more time before the surgery... he had never seen this before so my case hopefully has and will help my surgeon make a more informed decision for other women wit breast cancer. I have also developed truncal lymphydema [... but thankfully not in my arm] although I don't know if it is from the surgeries or the radiation, or a combination of both. However, despite these symptoms I am still ok with my decision because I wanted to treat it as aggressively as I could.

Good luck!

inks

Bluefin - so sorry you lost your baby. You have plenty of time to decide what to do with your ovaries don't rush into anything. Do you know what exon your mutation is? Some mutations are nastier than others and they press for oophorectomy more. But you could also look into doing ovarian suppression with Tamoxifen, it's reversible but slightly more effective than Tamoxifen alone. Some women do ovarian suppression during chemo to preserve their fertility. There was also a study that pregnancy after breast cancer treatment does not raise the likelihood of recurrence. I can't find the study at the moment to link it. And by the time you turn 35 there might be more changes to treatments and other things.

lemonadehk

Bluefin，have you decided? I am in the same boat.I am 36, BRCA2+, stage 1B with 1 micrometastasis in 1 sentinel node, multifocal (12 rumors and the biggest is 4mm), mastectomy, then AC-T. I saw four ROs and the majorty said I don't need it, but my primary RO is leaning towards doing it. like you, I am so scared of the long term effect of rads. Have been debating about this for weeks :

bluefin

inks - I had to look back at my genetic test but it says the mutation occurs in Exon 22.

lemonadehk - I did decide to do radiation. I went back and forth so many times and I finally came to the conclusion that I could justify both doing radiation as well as not doing radiation. What it came down to for me was I don't know which is the "right" decision, but the one thing I do know is I have too many high risk factors for recurrence (high grade, large tumor, my age, etc) to completely ignore those, even with the PCR. I am scared of long term side effects too but the thought of the cancer coming back and potentiallyprogressing to a more advanced stage is even scarier. I had my CT simulation last week and start in a couple of weeks. Good luck with your decision!

FastWalker

Bluefin: I am so glad you decided to do radiation. As you said, you have too many high risk factors - very young age, BRCA positive, premenopausal, grade 3, large tumor size (which continued to grow despite chemo), tumor near the chest wall, and PR- status. Also, all of your doctors agreed you should have radiation. . . One way of minimizing side effects is to have prone breast radiation. This is what I am currently getting. My radiation oncologist is very big on it - even for right sided breast cancer (which is what I have). Prone radiation is on your belly and protects your heart and lungs.

lemonadehk

Hi bluefin, I have also decided to do rads. Although several doctors recommended no rads, they did acknowledge that I am in the gray zone. My attending doctor finally made the call to do rads because of my age, 1 positive node (although micrometastasis), and the multifocal nature of my tumor (12 small tumors). I will start tomorrow. I will see you in the summer rads thread

GrammyR

Bluefin- wishing you a very smooth course of RADS.A wise choice I think. Hugs and encouraging thoughts .