Experience/Guidance Welcomed: To Radiate or Not with Tissue Expanders, Given Oncotype/Known Risks

LifeInBloom100

Hi there!

I apologize this has lengthy backstory - I'm grateful for anyone's breast cancer experience whose prognosis may be similar and who've had similar decisions to make:

I'm an otherwise pretty healthy premenopausal woman (runner - 30 years with a generally healthy diet) recently diagnosed with invasive ductal cancer and underwent a double mastectomy with immediate tissue expander placement during that surgery. I had a re-excision surgery to the left breast which affirmed all clear margins, but just a sentinel node had a small amount of cancer cells (three others were removed - they were clear).

I had a lower oncotype test result (under 20), but because I am premenopausal (and am ER/PR+/ HER2-) and had one positive node, it's being recommended I get lupron injections to shut ovaries down (an abruptly induced menopause with its own health implications and side effects) and go on hormone pills (I guess Tamoxifen?) AND receive radiation to the left breast & side. (My right breast eas healthy, but had a history of benign biopsies that indicated an increased risk of bc.)

I have opted NOT to undergo Chemo therapy, as it would have just a 2 to 2.8% decreased risk of distant recurrence value - a percentage I feel isn't worth what Chemo may do to my body long-term. (I respect everyone's choice and that that may be worth it to you - please know it's just my personal decision.)

• ONCOTYPE: IF I DO NOTHING FURTHER THAN SURGERIES & hormone treatment:

• I have a 16% risk of distant recurrence in the next 9 years, according to my oncotype result (84% odds that it WON'T happen).

• I have a 10% risk of local recurrence. (90% chance of it NOT returning locally).

WITH LUPRON and TAMOXIFEN: I may reduce my risk of DISTANT recurrence an avg. of 2-3% over 9 years- and of course this may not factor in a nutritious, cancer-gihting diet and lifestyle changes as best as I can make them.

WITH RADIATION: I may reduce my risk of LOCAL recurrence from 10% to 2%.

BUT - Aside from the potential long-term health implications of radiation (heart and lung disease, the less likely but possible risk of blood cancers, irreparable skin problems, bone thinning, increased risk for other cancers) -- I'm aware there is potential for significantly increased risk for MINOR TO MAJOR complications to TISSUE EXPANDERS - leading to a range from treatable infection and minor skin burns and tightening/shrinkage to major complications, such as tissue expander leak, burn, removal and total failure of reconstruction.

• QUESTION: Of those of you have have found yourselves with a similar prognosis, have you had radiation with tissue expanders, and what has been your experience? DO you have thoughts on the benefits to undergoing radiation, or as to why you forwent it, if you had? For those of you who chose to undergo with tissue expanders - would you have made the same choice? Has it been aesthetically successful overall, when all was said and done? How was your experience with radiation on the whole (what can I expect of side effects)? And would the reduced risk by 8%, given the odds I mentioned, be worthwhile to undergo radiation in general, in your opinion?

I hope each of you answering is doing well and has significantly improved your health and quality of life.

Thank you very much for your time and thoughts. I'm navigating this basically alone.

God Bless,

L

LifeInBloom100

https://csn.cancer.org/discussion/327315/experience-guidance-welcomed-to-radiate-or-not-with-tissue-expanders-given-oncotype-known-risks

And forgive me if this was too lengthy or self-involved? This is my first visit to a board like this, and am navigating everything with zero support group precedent. I appreciate there is one online that allows for a variety of experiences and shares.

LovesPrimes

Hi, LifeInBloom! First let me say welcome to the club no-one wants to join but you are cared about, loved, and welcome here - no judgment. I can't address all your concerns and, you're right, everyone has to make their own decisions but I'll chime in with a couple thoughts.

I also had bilateral mastectomy with tissue expanders. The surgeon, I think, thought I should choose lumpectomy with 4-6 weeks radiation and said mastectomy might mean no radiation but not necessarily. With my family history and feeling like it was my best chance to avoid radiation, I chose the mastectomy. That is to say, I DID NOT WANT TO HAVE RADIATION. I don't know that that helps you and I cannot say what I would have done if I was told what you were told.

Also, of note, I also am ER/PR+/ HER2-. I was on Tamoxifen for 2.5 months and it drastically decreased my quality of life. If that had been my only option, I probably would have not taken the drugs and taken my chances with recurrence. But I chose to have oophorectomy (and it was done laparoscopically!) so I could be switched to anastrozole. The new med has side effects too but nowhere near as bad as Tamoxifen.

Please feel free to share/ask/comment as much as you want.

LifeInBloom100

https://csn.cancer.org/discussion/comment/1710622#Comment_1710622

Oh my goodness - thanks so much for sharing what you've been through this far. May I ask how long ago all of this took place (you'd said your surgeon said you "might" not have needed radiation)? Was radiation indeed not recommended post-op, or did you opt for none, or both? Also, if you don't mind my asking, were you any number of lymph node-positive?

I do hear about Tamoxifen side-effects regularly, but truthfully, I don't have enough point of reference not to trust my care team that it's a worthwhile prevention-angle re: recurrence.

Gosh, there are far too many women with breast cancer (and others with cancer, whatsoever), and I pray that time buys those of us afflicted by it the possibility of widely-offered cure in the near future.

I thank you so much for yor kind response, and I wish you continued improved health.

Sincerely. :)

LovesPrimes

Everything has been this year. Diagnosed in March. Surgery 50 days later. They felt confident they got it all and all three lymph nodes they took were clear so they did not recommend radiation.

I have no regrets about trying the Tamoxifen. There are many people who take it with no side effects or manageable side effects. It’s important to find what can be reasonably managed long term. I’ll be on the anti-cancer meds for 5-10 years.

Once I have my reconstruction surgery in a few weeks, I will have had three surgeries in less than 8 months. Been a hell of a year…

LifeInBloom100

https://csn.cancer.org/discussion/comment/1710627#Comment_1710627

Wow -- it sure has, for you. And I'm so glad you're nearing the end of the surgical process, and wish the very best for your reconstruction procedure coming up. I too was just diagnosed Sept. 30th, had my bilateral mastectomy 10 days later, and 10 days following IT, the re-excision. It's all moving so fast - if I go through with the radiation as recommended, I'll begin in 3 weeks. We've both trooped through a whirlwind, it sounds.

I thank GOODNESS your lymph nodes were clear; as of the breast MRI two days prior to my bilateral surgery, it appeared as though mine would be too, but alas I was unlucky to have had one infiltrated, asdiscovered during surgery.

Thanks kindly again for sharing with me. I'm thinking good thoughts for you!