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-   -   Radiation after pCR - what to do!? (https://her2support.org/vbulletin/showthread.php?t=60896)

bwAK 05-05-2014 12:31 PM

Radiation after pCR - what to do!?
 
Hello ladies,

I’m your classic forum lurker, but lately my wife and I find ourselves in the midst of making a big decision and I was seeing if anyone has had any relatable experiences or decisions to make. We’re triple positive and most likely stage IIish IDC (T2N1M0 -- hard to know what our final stage would have been because we got a pCR). She started neoadjuvant chemotherapy (TCHP) in December and had her BMX a week and a half ago. As I said, we received a pCR -- no sign of residual disease, the one lymph node we knew was positive before chemo had scarring (they call it the therapy effect). They were able to take out a total of six sentinel lymph nodes with only the one showing scarring – so we can be confident it didn’t spread much further. Furthermore, my wife’s reaction to her chemo cocktail was superb, with the tumor melting before our touch within days of the first infusion and being undetectable by the second.

So, everything has been textbook to this point, but now the question of radiation has us reeling. We fall into a gray area of knowing whether or not it is needed in our case. Being Her2+ with aggressive cancer and one positive node, we know we would be getting it had there been any residual disease after surgery. But with a pCR and such a good reaction to chemotherapy, is it necessary now? This choice is made much harder because we are quite young (by BC standards). My wife and I are 26, thus we have a longer time to develop a secondary carcinoma. In addition, younger survivors' risk is just generally higher after radiation (did you know child cancers survivors have a 25% increase in developing a cancer like BC throughout their lives?). Our chance of getting a secondary cancer is not that high (maybe 2-4%), but it’s stupid to think about -- would a future recurrence of BC be easier to treat than a secondary cancer like lymphoma, myeloma, or lung cancer?

So there it is. We had early but aggressive breast cancer and now a pCR – so what to do about radiation? Our breast surgeon and RO are both leaning towards no – but our RO called the head RO at MD Anderson (a colleague from med school) for a second opinion and he was adamant on radiation based on our age and that we should throw everything we can at it. Blaaagggh.

I’m definitely not looking to the community for a definitive answer, but has anyone had to make or think about this decision? How and why did you come up with your answer? I always appreciated the ladies on this forum and the information and comfort you’ve provided me even though I haven’t been a member. Thanks for your consideration.

tricia keegan 05-05-2014 12:42 PM

Re: Radiation after pCR - what to do!?
 
Hi,

Glad to know your wife's response has been so good, this disease is all about making tough decisions and I was glad in my case that I didn't have a choice as I had had a lumpectomy.

I can't help you much with your decison except to wish you both well, but looking back now nine years on I really am so pleased I completed chemo and rads and thankful to be still cancer free. I chose to throw everything I could at this and think in your wife's place I would still do the same, who knows what may help us avoid a recurrance?? for all we know its the one thing we thought we wouldn't need, thats my view on it anyway!

LeahM 05-05-2014 05:55 PM

Re: Radiation after pCR - what to do!?
 
Wow. And I thought I was "young" at age 39. Congrats to you both on getting thru this far.

I was Stage II IDC with one pos node also. I had b/l mastectomy followed by TCH followed by rads. I didn't want rads. I got a 2nd opinion. I hemmed and hawed and hated the thought of it. But I did it. It was recommended based on my "young age" and the fact that the one pos node was the only node removed (see signature) and I refused a nodal dissection.

Ultimately I asked myself this question "if I don't do rads, and my cancer comes back elsewhere, will I blame myself for it because I didn't do rads?" My answer to that was "yes" and so I did it. Under duress. Bitching about it the whole time.

But truth be told, it was easy compared to everything else. I am sure your wife has HAD IT with being poked and prodded and is desperate for a return to normal. I was too. The right creams and the right amount of rest made it easier.

Do I worry about new cancers because of rads? Not really. Do I have lingering effects from rads? I believe so. That combined with TCH has damaged my lungs, at least, I think it has and I'm sticking to that theory.

But....I am glad I had rads.

This is a personal decision, one that can't be made lightly and I wish you all the best in making it. Keep us informed.

Best
Leah

sassy 05-05-2014 07:58 PM

Re: Radiation after pCR - what to do!?
 
For myself, I have chosen the path of most aggressive treatment. Rads were not optional in my case, but if I were in your situation, I would still choose rads.

Playing Devil's advocate, If you choose not to do rads, will you always second guess the decision?

So happy for your good response, and wishing you leave throughout your decision making.

roz123 05-05-2014 08:02 PM

Re: Radiation after pCR - what to do!?
 
I was in the dreaded grey area

I also had a pcr after chemo -here's the kicker, I had no positive nodes on imaging before chemo started, my tumor was 2.2ish cm
the reason I was told I needed rads:
grade 3
LVI
young age (42)
I also had the scarring note on my post surgical pathology which makes me think I did have a positive sentinel node
I did rads because I only had 2 nodes removed and I was worried about that plus my RO strongly recommended based on the 3 factors above
I think ultimately I was over-treated but I made the best decisions I could at the time

I asked my RO and he said the pathology and treatment prior to starting chemo is how they make their recommendations. I believe they are studying how pCR affects things like radiation bu I haven't seen any results - maybe ask if there are any studies out
rads has its own SE and your concerns are very very valid


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