Radiation Necessary

Wildruma, my rad onc (best in area) said, "you are in a light grey area and there are no wrong answers!" Not that helpful but honest! And her tumor board said risks didn't outweigh benefits. Sometimes I wonder if we don't hop  on the radiation board because we feel we can't stop treating ourselves without feeling like we didn't do "all we could."

I'm in a bit of a different situation.  Had BMX on 4/4 with two nodes removed.  Both were found to be clean at the time.  Pathology report came back 1 week later and showed one of the nodes with 2.2mm of cancer (under 2mm is considered micromets), LVI, and extranodal extension of the node.  Was given the option of a second ALND surgery or radiation.  The Sloan-Kettering tool showed me as having a 22% chance of there being any additional lymph node involvement.  Had my case reviewed by 2 different tumor boards (one of which is the "go-to" facility in the NW) and in both instances, although not unanimous, the boards felt radiation vs. ALND was the appropriate path.  

So, I will be getting 6 rounds of T/C chemo starting this week, followed by 6 weeks of radiation.  I hate the fact that radiation will impact my reconstruction options (had skin sparing BMX), however, in my case there are additional benefits to the radiation over ALND.  It will reduce my risk of recurrence to the chest wall, will address the LVI, and it will zap any cells that may be hovering around in the lymph area.  Every case is unique, and mine was definitely grey regarding the appropriate treatment path.

I think we all ultimately have to make the decision we feel we can live with, then move forward without looking back.  

kimkay -  You may want to consider setting up a consult with a Radiation Oncologist.  They can talk you through the pros and cons of radiation.  There's a lot of information out there on the internet regarding radiation, however, I found it all to be very confusing since the decision to radiate is so situational.  They've come a long way in being able to minimize any potential heart damage from radiation (i.e. can angle the beams in a certain way).  I also was really bummed about having to deal with radiation due to the reconstruction issues, but decided this is a season in my life that will pass and right now I need to make the best decisions regarding reducing my risk of recurrence and deal with reconstruction afterwards.  

There are a lot of great Plastic Surgeons out there who can deal with the effects of radiation in a way that will make you feel relatively good about your reconstruction. Your cancer does appear to be aggressive, so now if probably the time to get the best advise possible regarding future direction for your treatment.     

Yes, I went to the PS right after i saw the BS on Friday as I was so upset about the sudden news of needing Radiation and not being able to be reconstructed right away.  He said that since it would be a YEAR after my radiation that I would need to wait, I could have a Tummy Tuck and use the skin from the Tummy to replace breast skin.  I was happy about that but I just don't want to wait a whole year with Falsies!  Did anyone out there wait a whole year to get reconstructed?

Both Kimkay and Raelan - After reading your history, you both absolutely should have radiation.  I wouldn't even think twice about it.  You have several variables that would suggest the need for radiation.

kimkay - The timing for reconstruction after radiation varies depending on the PS.  I've heard varying opinions on this, ranging from 4 months after finishing radiation, to 6-9 months.  I have not heard one year, which seems pretty extreme to me.  At this point, I'm planning on starting about 6 months post radiation.  This gives time for the skin and tissue to heal.  I figure in the overall scheme of things, one year out of my life to deal with breast cancer is doable, especially if the treatments I'm getting will do everything necessary to reduce my risk of recurrence in the future.  I'm more interested in living a long life than I am in having a few additional scars on my breast....which only me and my husband will see.  By the way, I'm 49 and used to have very nice breasts......34DDD.....enjoyed them while I had them, but my priorities right now are focused on getting well.    

bdavis- the NCCN is the Nat'l Comprehensive Cancer Network.  I'd never heard of it before being diagnosed either.  Apparently these are the guidelines that the oncologists office I go to follows.  I think that the oncs are following some form of structured treatment recommendations (do you know what they based the decision on for you?) -  i.e., I believe it is the NCI (Nat'l Cancer Institutes) that run the trails (not all but majority?), collect the data and form "standards" based on what has happened in the research stages.  It takes YEARS to develop treatment protocols although it seems to us like they're changing things all the time.., I'm not sure that they are changing the guidelines, I think the medical community is talking about what they are finding in the latest research trials.  But that's just a hypothesis on my part. 

Bottom line, I believe I am in the "grey" area as well.  I plan to consult with a RO but I believe that they will recommend radiation so I'm just here looking for women (& men) with experience to shed some light on the subject so I can go in and ask some intelligent questions when I meet with the RO.  I do not believe there is any right or wrong when in the grey space.., I'm just trying to put it all together so I can make a decision while I have time. 

Thanks for helping me along in the process.

CC

What was the UCLA study?

The rad onc I saw was refreshingly honest! He told me that since I was in my seventies there was very little benefit for me. When I asked about side effects he mentioned rib breakage (although he himself had not seen that) and that parts of my heart would be irradiated (I had a lump on the left side) he also said radiation can cause other cancers and that part of my lung would also be in the radiation field. He said it was up to me, so I declined.  My regular onc did not agree, but did not argue with me.

So here is my question, maybe you girls can give me your opinion ? I have stage two breast cancer I had a mastectomy and seven rounds of chemo, I have been told I have triple neg and my tumor size was 8

Cm. I have had all scans done and they have come back clean, I have no lymph node involvement and clear margins . I was told by my oncologist after questioning her and she said I would not have to have radiation, cause to celebrate! Well now I received a call from the radiation nurse two months after my last tx that I need to come in discuss rads ! What??? Now I feel overwhelmed all over again , I thought I was getting on with my life and trying to fix the damage but now told this, I said to her I didn't think I was having rads done and she said well just come in and talk about that, I feel so confused now and feel am I doing all I'm suppose to do to fight this disease? I really don't rads!

SO CONFUSED. I met with the RO yesterday. She is against radiation. She said that usual protocal for rads is 4 or more lymph nodes involved or tumor over 4cm, or profile, i.e. BRACA or estrogen factors. I had one lymph node involved, 1.6 cm tumore, ER+, HER2- and BRACA neg. Yet I have spoke to many women with similar dx and they did rads. The RO said it furter cuts reoccurnece by 15%. Why wouldn't i want to do RADS? She said because my cancer was on left breast. 5% chance of heart disease. Geez I'm not sure what is the worst of two evils. My Onc had said guidelines were changed last year to 1 or more lymph nodes involved. Any advice?

Dipad.. its my understanding that the guidelines didn't change but a study did come out and was reviewed at some radiologist conference in Oct 2011 showing that women with 1-3 positive nodes could benefit from radiation even though they had a mx.  This was a departure from the previous thought of 4+ pos nodes if you have had a mx. The study stated for there to be benefit there had to be other factors beyond the positive nodes.  If I remember correctly the benefit was dependent on a few factors... whether there was LVI, size of the tumor, and whether or not the nodes involved were micromets, or not.  The study also showed that the benefit of radiation increased with the number of pos nodes involved. So, three pos nodes received more benefit than someone with micromets in 1 node.  I really struggled with the radiation decision. I went to two ROs and both told me no.  That the benefit did not outweigh the risk for my situation. I'm happy to have skipped it and feel it was the right choice for me.  I would get more than one opinion, but there are real risks to all these treatments.  Look at Robin Roberts, from Good Morning America. She is 5 years out from TN breast cancer and announced this week that she is now facing a form of leukemia. Very frustrating.

I had a lumpectomy. Margins not clear. Surgeon felt 2nd one would clear margins. I opted for bmx. ! node involved that was micromet. tumor 1.6 cm no LVI. (however not 100% guarantee). I've been in the hospital for the past 5 days with cellulitis of left TE. Came out of nowhere. I'm still here on IV antibiotics but am going home tommorrow. Can't wait.

Thanks guys

"As you stated,  the cure can be worse than the disease, but that depends on the severity of the disease..."

This is what needs to be considered most. I refused rads, as mine is in the left breast and I have lung disease ( among other health issues) There is no way I would have rads to my left chest area with my staging. 

Cancer is bad - DEADLY , let's face it , but I will not 'push myself' to an oxygen tank and live that way any faster than I might inevitably.  I was never aware of all the " catch 22s" involved in fighting BC until I started facing so many of them.  We all have very different circumstances and the cookie cutter care should not be applied to each one.  I resent people who think I am not fighting my BC.  It's not that at all.  I am fighting  to live a qaulity life with the hand I have been dealt.

  QOL is important.