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Anyone forego radiation? Research, personal experience, outcomes
I’m 71 year old recently diagnosed with stage one grade 3 triple positive lobular cancer. To date I have had a lumpectomy and two sentinel lymph nodes removed. I finished chemotherapy and still have nine months of Herceptin infusions remaining. I am possibly starting radiation in several weeks and then will be placed on hormone therapy after that, the radiation oncologist told me I am at high risk of developing breast lymphedema from the radiation. I researched this side effect and is one that I definitely do not want. I have looked at studies that have shown radiation can be omitted in my age group with little impact when you have had a lumpectomy, chemotherapy, Herceptin and hormone therapy. I am wondering if anyone else has faced this decision or forgotten radiation treatment. Thank you for your consideration and answering this question.
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OK, did the research and both add to risk, which you may have already known, but the higher risk comes from surgery.
"While both node removal surgery and radiation increase the risk of lymphedema, surgery is generally the primary driver, with the risk increasing with the number of lymph nodes removed. Radiation adds to the risk by potentially damaging lymphatic vessels and causing fibrosis, especially when combined with extensive surgery.
@wyowyld
thank you so much! I appreciate your input. I’m going to ask about possibility of doing targeted therapy only. they said it would be 3 weeks of whole breast and then 1 week of targeted
@wyowyld
thank you!
@grizzley1988
I would like them to give me the numbers like that. It would help me make an informed decision
I had a lumpectomy and sentinel node biopsy almost a year ago. Negative node involvement. The cancer was small (1-5 mm )but invasive ductile. The surgeon said the margins were good. The oncologist said I didn’t need radiation. She didn’t say it as if there was any discussion. That was it. It was my left breast , so maybe there’s more concern about damage to the heart. I didn’t question it. I was just relieved. When I see her again, I’ll ask her to explain why.
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1 Reaction@dietgourmet i’m so sorry to hear of your problems post treatment. thank you for your input
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1 Reaction@roz24
i am grade 3 her2 positive, idk if that is why they want radiation
@crspedsrn
Of course we are all different. I was very surprised and actually a little concerned when the doctor said I didn’t need it. So often when we are given unexpected news, we are a bit shellshocked and only afterwards we wish we’d asked more questions..
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1 ReactionI also chose radiation for lobular. I've been lucky and trust my team. They've always offered to set up second referrals for me, etc. Because lobular is diffuse (can take different routes...at least I think that what it means), I wanted to do everything I could to avoid recurrence. ALthough at first they suggested one week, he later suggested three because it was lobular. During radiation, I used the 3 creams recommended on this loop. Rotated them and always slapped on the aloe vera gel in the dressing room on my way out. My breast is in great shape. I have never heard of radiation causing lymphedema so that is new to me. But I have known women who got it after having nodes removed. I'm on anastrozole and so far, have not had problems with it. Yesterday I went to see a specialist about a separate issue. Female, probably in her 40s. When I told her I had lobular cancer last year, she said she had it too and she chose a double mastectomy. Didn't want the yearly MRIs, etc. We are all different. I'm in my late 70s. Didn't want drains etc. And I'm searching for a ten minute breast MRI. They exist. Your choice will be what fits you and your life. Best wishes!
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1 ReactionI think we all need to remember that we can always go back to our surgeon, or phone in, with any questions regarding our treatment plan - and at any time. My DMX was on July 9th and there were a couple times I needed to call the office for advice or more info on the treatment. My surgeon likes to see people for 2 years out...but I am pretty confident that she, or her staff, would answer a question beyond that; perhaps they would require me to come back in but I would do that to ensure my best possible outcome. I am currently struggling a bit with lymphedma from the DMX...and I had no lymphnodes removed (dyed but was not required in surg path), clear margin, and full path came back negative so no radiation or chemo required. My lymphedema is definetely from the surgery. Currently doing manual massage, cupping of fibrous areas, wearing compression - and just started using kinesiology tape to help drain my chest into my pooh belly...plus reduce the pooh belly. I think it is working. Next L-dex is November 20th. Good luck with your decision on radiation or no radiation.