does chemo response change the need for rads?

pamelahope

does chemo response change the need for rads?

pamelahope

I have my BMX on Monday so I should really wait till I get surgery pathology to post. However, I am feeling like an animal about to be slaughtered concerning my recommendation to have rads.

I had a 5 cm lump and a positive sentinel on PEt and MRI, grade 2, BRCA2 positive at diagnosis. After chemotherapy I have no lump and the BS doubted it was even in my lymph node anymore. I will be have both breasts removed and a axillary disection. I don't want radiation because I have a high risk for secondary cancers. Plus, I suspect I have an increased sensitivity to it.

Because I achieved such a dramatic response to chemo and only one node positive, wouldn't that lessen my need for radiation? My gyn said he wouldn't do it if I am having a mastectomy. Anyone else have this issue? I just feel so trapped, damned if I do and damned if I don't...

Pam

dlb823

Pam, chemo and rads do two very different things.  Chemo is systemic.  Rads, OTOH, basically sterilizes the breast area, so that bc cells can't return and regrow there.  They're not really interchangable, so to speak.  Do you know why rads was recommended to you in the first place?  Usually it will be for a specific reason, such as a lesion that's close to the chest wall, for example, where the margin isn't really sufficient for peace of mind.  Your rad onc (not a gyn) should be able to explain to you exactly why rads is/isn't needed.

Most of us really fear rads and hate the idea of doing them.  I actually talked to 3 different rad oncs, trying to get out of them.  But in the end -- since all 3 said I needed them (with a uni-mx, but an unspecified margin and a lymph node with extracapsular extension) -- I did them, and it was really no big deal.  But a good rad onc should help you weigh your concerns against the benefits, if it's even recommended for you.  And you can always get a 2nd and 3rd opinion, and you don't have to do them even if they're recommended.  I'm not advising that; just reminding you that it's your body and your choice.

Good luck with your BMX!!!  Try not to worry about the rads until you have more information.  One thing at a time... and focus on healing...    (((Hugs))) Deanna

pamelahope

Thank you Deanna! I have read a lot of your posts. I think I remember reading you saw a holistic oncologist or naturopathic doctor. I read a lot but fuzzy on details...I do value your opinion.

I relate how you went to three different doctors trying to avoid it. I may be doing that...

My doctor said something interesting to me. He was recommending an oooh to me and I said my mutation was not in the ovarian cancer cluster and no one ever had oc in my family, just one case of pancreatic. So when you are dead and they come to look at my books and they wonder why you didn't have an ooopherectomy... My doctor gets excited when I ask questions. I wasn't saying I wasn't having it just making sure I needed it. Anyway, that got me thinking, how much of the recommendation is defensive medicine. From everything I read I am in a grey area. I am wondering if they have to recommend it...

Pam

SpecialK

pam - I had BMX and complete ALND for a pos node but did not do rads.  My treatment occurred during the time period when the NCCN guidelines were changing regarding positive nodes.  Both my MO and BS said rads were not needed even though I had a pos SNB and additional 6mm pos node.  Have you had a consult with a rad onc yet or are you waiting for your post-op path?

dlb823

Pam, yes, I saw the integrative doc @ UCLA post-conventional tx (which was also largely @ UCLA) to discuss diet and supplements, and I see a naturopathic doctor now, in addition to follow ups with my UCLA docs and local onc.  But I've always been very much into holistic healing (food vs. pharmaceuticals), so really had to be convinced to do chemo & rads.  In fact, after 3 rad oncs told me rads was absolutely recommended for me, I actually called my onc @ UCLA about it, and she offered to refer me to a rad onc outside of UCLA. It was only then that I realized how silly I was probably being, searching for an opinion to disagree with the highly esteemed folks @ UCLA, and I stopped looking and did the rads.

I truly believe our docs sincerely want the best for us, but there is also truth in the fact that they have to adhere to a "standard of care" to protect themselves, when perhaps in their heart of hearts they would not if liability wasn't an issue. That's JMO, but I think you can sometimes gain a bit more insight into what they're really thinking if you ask, "If I was your wife (or Mother, or sister, or daughter. depending on the age relationship), what would you do?"    Deanna

pamelahope

Thanks Deanna! That is what I may be doing...searching for someone to disagree! My case will go to the tumor board after surgery.

I did ask my vs what he would do and he said he would want the most aggressive treatment possible and would do them.

Pam