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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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@luckbme - Doctors cover themselves and each other. You are right, we have to listen carefully and observe...as well as know our risks. Getting second opinions was the best thing I did for myself in this situation.
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1 Reaction@crspedsrn - yes. Grade 3 is considered aggressive. I am sorry. That is what I had too.
I want to skip any sort of post IDC lumpectomy treatment! Has anyone done that?
Crsp- your treatment program does not seem typical for triple negative BC. You don’t say size or spread of tumor, but I was stage 1 triple negative, clear nodes with the ATM gene.
I opted for a double mastectomy and no reconstruction, but my chemo came first, then surgery, then, in my case, additional chemo. One of the reasons I chose a Double Mastectomy was so that I did not have to have radiation, since there is guidance that it is not advisable with the ATM gene.
I am wondering if you had any genetic testing. It can help guide your plan.
Wishing you the very best.
I wanted to add that although I did not have radiation due to electing a double mastectomy, I only had three nodes removed, but still got lymphedema in my left arm. Catching it right away and getting massage therapy did cure it. Did not know at the time that my belly was effected by lymphedema or I would have gotten massage therapy in that area.
I was also puzzled by your hormone therapy, as TNBC is not hormone driven. Take a look at the MD Anderson study on TNBC and taking a statin drug. I now take Lovastatin as a possible deterrent to reoccurrence.
@drummergirl
i’m triple positive
@drummergirl
i’m triple positive stage 1 grade 3 no lymph node involvement
@crspedsrn
Oh whoops, read it wrong🤪
@crspedsrn
Yup, misread, but my point was that lymphedema can be treated successfully.
@wyowyld Thanks for your detail - I am scheduled for the 5 targeted sessions in a week and am having my doubts. I'm inclined to do it as I gain 9% increase in "cure" to get to 99%. I am very low risk etc... but it is not something I can do in 6 months etc. It is very stressful. My radiologist is on vaca but going to talk to Onc - surgeon and Onc did not think I needed radiation... Is radiologist just "up selling" services???? Plus they are talking about Tamoxifen for 5 years - worried about side effects also but Onc said if I am bothered she could consider taking me off them. So maybe radiation is the way to go, 5 and done, then reduce or stop Tamoxifen in future..