Recommendations re: on "partial" rads in Ma. ?

gymnut

Hi all,

First a brief hx & update for those who have seen my posts before.  (Also, I just wanted to say that it seems that there are a lot of people in the Boston area! I read on one of the other threads, maybe a couple of weeks ago, where someon suggested coffee sometime...Interesting idea, which I'd be interested in exploring if others on this site would.)

Anyway, I'm on the North Shore (Salem-witch jokes aside) & was diagnosed in December w/ DCIS aa result of excisional biopsy. (Calcifications on routine mammo.)  After some soul-searching, decided on re-excision & radiation, though still trying to get some additional info. on the alternative types of radiation.

The good news is my re-excision on Jan. 25 went well & everything was benign. (Yeah!)(Surgeon went back in b/c one of the margins wasn't larger enough after initial biopsy.)

I've met w/ radiation oncologist at Mass General North Shore & was very comfortable w/ her.  She can do radiation in prone position, if that makes sense for my anatomy.  My understanding is that's usually considered less risky for heart & lungs when issue is Left breast, which mine is. 

Mass General does not do other types of radiation, at least not for breast cancer. I've read about what seem to be good or promising results for DCIS, though recently read that small-breasted women, of which I'm definitely one, may not be candidates.  I'd like to get some more info. & think that I should at least get a 2nd opinion regarding further treatment before just having the "standard" radiation.

The radiation oncologist I met w/ has not yet given me a recommendation (I may call again) & I'm waiting to hear back from my bs regarding her opinion on this & possible recommendation for 2nd opinion.  I could also ask my pcp, I suppose, who I don't really love though she's been really supportive through all of this.  I thought since there are so many wonderful, knowledgeable women on here, I'd put the question to all of you as well.

While it's great to have this amazing resource to turn to, I'm also sad that all of you have had to go through this as well.

 Thanks in advance & take care. 

DB-donna

Hi Gymnut!   This is my first time posting here, although I have belonged (and lurked) for a while - but I relate to your situation and thought I would share some of my experience with this!  And you're right, this is such a great resource with so many knowlegeable women to share with!

I was diagnosed w/DCIS last April after a routine mammo (also having ultrasound for Uterine cancer at the same time) - and both reports came back negative.  Had a magnified mammo that showed the micro-calcifications, and went to see BS - a lumpectomy was done the end of April, and the pathology report was 'malignant', but BS felt it was non-aggressive - also did not have the clear margins that he wanted to see.  So we scheduled a re-excision (partial mast.) and Sentinel Lymph node biopsy (to make sure it hadn't spread) a few weeks later. Everything went very well - I think I had more discomfort from the lymph node part, post-surgery, than the breast surgery. 

Must admit, I was kind of surprised when he said "Oncologist" was next step (if he got it all and it had not spread . . ?) and that's when I joined this forum, I needed more information.  I went to the Oncology appt armed with questions to ask, but felt I hit a stone wall with this Dr. - his standard answer to everything was that Radiation was the 'standard of care' following surgery (I was NOT a good candidate for the Tamoxifen because of the uterine cancer 'scare'). Well, I didn't care about the 'standard of care' - I cared about ME and my circumstances!   I emailed back and forth with SWalters, Sandie, who answered you back on another part of the forum - she was GREAT!  Had a wealth of information and resources to find out about possibly NOT doing Rads.  She mentioned the Van Nuys Diagnostic Index, an interesting and enlightening 'simple' point system.  One thing no one ever mentioned to me, was that once you have Radiation, you can't have it again!

I scored in the low range of possible reoccurance on the Van Nuys test:  diagnosed early, Stage 0, non-aggressive and non-spreading, successful removal of area, and clear margins  - I discussed this with the Radiation Dr. (like you, I was also very comfortable with her).  We agreed that I should have regular mammos, every 6 months, and watch things carefully - if it should come back, then I can re-think doing radiation and whatever at that time. My BS seemed to be OK with this decision, as well.  I'm not saying this is the right course for everyone, but I felt I weighed all my options and have been comfortable that this was right for me. 

I've had one pebble thrown into the "plan" - I've had a complication of a Seroma problem, post-surgery, that won't seem to go away - so I have not been able to have a mammo yet!  Seroma is a build-up of fluid in the surgical area that keeps coming back.  Anybody else had an experience with this?  Can you suggest anything that might make it go away and stay away? 

So, gymnut, that's my experience - you might do some more research about the radiation treatments - especially if it's on your left breast (with the heart risks). Your age might be a consideration in your decision - I'm 60 and I felt my risk was low enough - but everyone is different!

Take Care and let us know how things go?

Donna

redsox

Gymnut,

It sounds like you have been in good hands so far. 

If you want to know more about accelerated partial breast irradiation (APBI), it is a newer technology with shorter follow-up data than whole breast irradiation and is usually recommended only to patients at low risk who meet specific conditions.  The following article describes guidelines for APBI based on the data available.  Their age criteria is >=60 years old or cautionary for 50-59.   

http://www.redjournal.org/article/S0360-3016(09)00313-7/abstract

"Standard of care" is not a dirty word,  It is the minimum I would insist on receiving.

gymnut

Thanks Donna & redsox,

Redsox, I clicked on the link but it was only the abstract, obviously.  Where did you get the additional info., i.e. age range recommended etc? I've read a bunch of articles etc & am a bit confused as to what I read where now, though I don't remember seeing that before.

Thanks & take care.

redsox

gymnut,

If you click on the tab that says "pdf" you should be able to get the full article.

This article summarizes the studies on APBI after an extensive literature search.  It should help you bring together what you have been reading.

It is interesting that the most favorable T classification for APBI is T1.  T0 is in the cautionary category.  Although T0 is better to have than T1, it is often more spread out in the breast.  APBI treats the area near the tumor or tumor bed, which is the area at highest risk.  It does not treat the area farther away in the breast, which has a lower (but non-zero) risk.