Do I really need radiation?

paknew · April 2013

I recently had a lumpectomy for DCIS and the margins were "really, really clean" according to my surgeon. She thinks that the area was so small that they got it all during the biopsy. She did say that there were some atypical cells though. I was stage 0, grade 3.

She suggested that radiation may not even be necessary. They're certain they got all of the cancer since the biopsy of the lumpectomy had no cancer cells in it. I would be a canditate for the internal SAVI radiation. I meet with the radiation oncologist tomorrow but would appreciate some thoughts. I certainly would love to avoid radiation if I can!

Moderators · April 2013

Hi Paknew,

Thought this could be helpful. Best of luck making your decision!
http://www.breastcancer.org/symptoms/types/dcis/treatment

Best, The Mods

RMlulu · April 2013

Hi paknew - congrats on clear margins and nodes speedy healing.

Have you met with a MO to review your path report? MO was able to take all my data and input into a program which gave me info to make informed decision on how best to proceed.

Each cancer is different so ask ask ask until you are satisfied with why you would or would not be candidate for radiation.

Make your list of questions...recurrence, grade 3, all data from path and then ask RO.

Take an appointment buddy to ensure you ask all questions and record answers.

Best Wishes to you...choices what ifs are hard, but we make the best choices with the support and expertise of our BC team. You will choose well brave warrior!

(((Hugs)))

Cindy

paknew · April 2013

I haven't met with the MO yet. I think since we're wanting to do the internal radiation (if I have to) we wanted to get the radiation going right away before the cavity left starts to close. Thanks for the advice and especially the hugs!

SJW1 · April 2013

Dear Paknew,

When I was diagnosed with DCIS in 2007, I had a lumpectomy and then decided not to have radiation after consulting with Dr. Michael Lagios, a world renowned DCIS expert and pathologist, with a consulting service anyone can use. He used the Van Nuys Prognostic Index and calculated my risk at only 4 percent without radiation. The VNPI is based on your age, grade and size of your DCIS and the size of your surgical margins.

Since you can only do radiation once, you may want to save it for any invasive cancer recurrence that might appear in the future, since DCIS is non-invasive. To make an educated decision for yourself, it would probably be helpful if you too could calculate your risk of recurrence without radiation. Typically radiation will cut your risk in half. So if your risk is unacceptably high, it might be worth it, but if it is low like mine was the benefits might not outweigh the risks.

Please feel free to PM me if you have any questions or checkout my website to read more of my story or find info re the VNPI or Dr. Lagios: http://dciswithoutrads.com/

Wishing you all the best, whatever you decide.

Sandie

paknew · April 2013

Hi Sandie,

Thanks so much for your information! It's very comforting because I decided to NOT do radiation after the consulation with the RO. He also used the Van Nuys Prognotic Index and said because of my age (48) and grade (3), he would support my decision to have radiation but because of the size of the area and stage (0) etc. he would also support my decision to not have it. It wasn't easy but I'm at peace and happy with it.

Thanks again!!!!

PeggySull · April 2013

Another question about needing radiation --HELP

I am triple negative, am a month out from surgery and immediate direct to implant reconstruction. I may have already mentioned the details, forgive me if so because I have been in a tail swim since a couple of weeks ago, after the post-op surgical results came in and for the FIRST time (after 4 months chemo and then surgery) my breast surgeon changed his mind about my potential need for radiation!!! He recommends a radiation consult which I may or may not do after seeing my MO.(BTW, my breast surgeon and MO have excellent reputations in my community...hmmm).

I am going to see my MO on April 30 (who btw also never uttered the word "radiation" in the 4 months I was seeing him for chemo) and I want to write a list of questions BEFORE the appt. and get them to him so he is prepared.

Two major questions I want to ask him before possible rad consults are

1. Will you bring my case up with the tumor board in this respect ASAP?

2'. What is my risk of recurrence if I don't have rads?

I would so appreciate any other questions I should ask him in my pre-appt. communication.

Thanks in advance!

Peggy

BrooksideVT · April 2013

I met first my MO, and then my RO, on the same day. The very first thing the RO said was that while the MO had just talked to me about systemic risk and treatment; she would talk about using radiation to prevent local recurrence. Just those few words clarified their very separate their roles, as well as my/our very different and very separate (local/regional/distant) risks. A consult is just an opportunity to gather more information. I know, you are already drowning in new information, but what the heck?

paknew · April 2013

I wish I could help you Peggy. I think you'll feel better after you talk to the RO. I was stressing over the decision to be made until I met with him. It's so much to absorb though. But like BrooksideVT said, the RO is treat what already happened...to make sure they got everytihing. The MO, at least in my case (I didn't need chemo) is to try to lower your risk or reccurrance.

My heart and prayers go out to you!!

keepswimming · April 2013

I am also questioning why I need rads. My MO said its based on the size of the tumor and has become standard practice in most cases. I have an occult cancer stage 3c, so i dont have a "normal" case. After chemo and surgery I am clear and my surgeon said there was absolutely no cancer left to kill. I also have te's in place but my biggest concern is I read that down the road scar tissue can affect the heart and lungs. If I wasn't clear I wouldn't question doing radiation but why would I risk future heart and lung problems with my current dx? My MO is pretty adamant, I'm not sure how to handle this. Any thoughts? Thx

ldesim · April 2013

I'd suggest perhaps seeking a second opinion?

dlb823 · April 2013

keepswimming, have you seen a rad onc yet? That's really the specialist qualified to determine why rads would or would not benefit you. My MO didn't think I needed rads, but every rad onc I consulted with said I did. Wait until you hear what a rad onc tells you, and even then be ready to get a second and even a third opinion. If they recommend rads, they should be able to justify that recommendation with specifics. (((Hugs))) Deanna

keepswimming · April 2013

Thanks idesim and dib823 I've got an appt in two weeks, I've had a small setback so they are waiting for me to get better.

PeggySull · April 2013

Keepswimmin,

I've postponed seeing an RO yet because I want to hear from my MO on Tuesday when I will also ask him to bring up my case with the weekly tumor board.

I'll share what I find out, in case it will be useful to you or others.

Peggy

Do I really need radiation?

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