I'm in the Gray Zone for Radiaton Therapy - anyone else?

I too, struggled some with the decision to have rads. Mine is a somewhat unique case, since I had a false negative SNB and then refused having further node dissection bc of worry of getting LE and worry of compromising my TRAM flap recon. So in a way I made the decision to have rads when I refused the ANLD. I had one small node and its unlikely there was a lot more- but since I didn't have the dissection, I really don't know.

Once I decided to have chemo, I decided to do everything I could. I agree with the thought , if I were to have a recurrence, I want to feel like I did everything I could. My additional concerns in my case were having an inside quadrant tumor and possible having undetected spread to the intramammary nodes, as well as having a high ki67 score. I have the same rads onc as ccbaby/Christy and he just doesn't seem very confident on making the call in breast cancer cases. I went up and saw the specialist in STL as Chirsty and I was really glad I did, as she did a really god job at explaining things.  So that is one thing I might suggest for someone in the grey area- go see a specialist for a second opinion, its worth it for the peace of mind.

So I've done 15 of 25 tx. I am getting IMRT/Tomotherapy radiation- I am not sure what the criteria are for using it vs not using it. Christy and I have similar cases but she has the expander and I had the TRAM done- and she is not a candidate for the IMRT. IMRT  is supposed to be more precise and have less side effects, but costs more and takes a lot longer each treatment

Dayla.

My radiologist is taking a lot of time getting my plan worked out. He says it is 'very involved' It has been a week since my SIM and what really worries me is that it has been 7 weeks today since my last chemo. I didn't think you were suppose to wait over 6 weeks? I called his nurse telling her my concerns about that and she said she would talk to him about it.

No grey area here, but I think it's because I had a lumpectomy. I wanna make dang sure they got it all and radiation seems to be the first option. I may have to go back in and take our more tissue and radiation would help. 

Im  adding this to my favorite topics.  Thanks so much in advance!

I'm so glad I found this thread.  I too am on the borderline for rads -- 1.8 centimeters, had a mastectomy, PR+ only, slow growing tumor and 4 positive nodes.  My oncologist seems to think radiation is the best choice for me due to my young age (33) but you have all given me some food for thought.  I just wrote down a bunch of questions for when I meet with the RO in a few weeks.  So thank you!

I will most likely opt for the radiation.  I have a young child (2 years old) and 3% is a lot to me.  But I want to be informed!

Hi,

I'm glad I found this thread. I was just told that I'm also in the gray zone.  I had 1/16 nodes and the sentinal biopsy and removed my left breast.  My doc says he thinks since I had the mastectomy, 16 nodes tested and am getting DD as chemo treatment that the radiation may not be necessary.  Isn't necessary vs. may not be necessary is a concern to me.  I also plan to remove my ovaries and right good breast in November and hope to have the DIEP in March or April.  My onc called the radiologist and asked for their opinion and the radiologist asked if I had Lympho vascular invasion which is not in my pathology report so my Onc is going to call the pathologist.  I guess I have to make a decision within the next 3 weeks.  My last chemo is Oct 12 and then my surgeries will occur in November.

I just don't know what to do about radiation??????

Connie

Personaly I am not triple neg but I would of skipped the rads if I had done more research.I found them more stressful and harder than chemo.

Arnie it is a real personal decision.In my case I was terrified that  my lungs or heart would be damaged and it did not help that every treatment i had was with a different rad team.I was a nervous wreck and got really bad 3rd degree burns to deal with later. I have talked to other ladies who sailed through with no problems.Good luck with your decision. ((HUGS))

Arnie, you say your radiation oncologist tells you that your recurrence chances drop from 30% to 6%. That's a lot and would seem to be pretty significant, since local recurrence is what adjuvant radiation therapy is suppose to address. Could it be she was talking about overall body recurrence prevention?  On the other hand, even if it is only local recurrence she is talking about, then, IMHO, it seems a 5-fold favorable increase in your odds from that more limited stand point is worth the radiation. After all,  we want to avoid as much as is reasonably possible any recurrence of cancer in the local area so that we lessen the odds that it spreads farther afield later.

The interpretation of what doctors and their statistics are saying makes this whole business of dealing with breast cancer more stressful than it should be.  These are tough decisions we have to make and straight forward, unambiguous facts are what we need the most.

I wish the best for you.   

Good luck with your decision ladies.  Its a hard one.  I had a lumpectomy and Im concerned and on the fence as well since Radiation is terrible in general for you but could save my life.  Im still waiting for my ro to get back to me with the study that states the risk is reduced from 25-30% reoccurance - I asked her for it two weeks ago.

My RO stated that because of surgery, there is the possibility that the chemo could not get to the cancer cells at the surgery site and that radiation targets these cancer cells which may still reside there - killing them. 

Good luck, its a very personal decision and you are doing the right thing by questioning everything.  Someone on the boards had said that ppl spend more time deciding on a house than on their treatment so kudos to all who research!

Hoping--

For what its worth, I am certain you have made the right decision for yourself and have handled this gray-zone question perfectly.  You learned as much as you could about the choices, talked to others in similar circumstances, and then acted on your decision.  The most healthy part about this appears to me to be your conclusion that you have done your best and you will not second guess your decision in the future.  I think this attitude and approach will pay off for you with good health for a long time to come.  Good luck and thanks for starting this thread.---bird

I'm pretty frantic with trying to investigate the decision to have radiation or not.  It is seeming like the more I read the less clear the information about the pros and cons for us in the gray zone.  I was hoping to hear from others who had a radiation oncologist advise against and find out the rationale for the advice.

It would be nice to get the name of an oncologist who tends towards a more conservative approach to balance out the "hit it with all you can" philosophy.  I would appreciate either a public or (if you feel more comfortable) private response.

A big thanks to all who have shared about this difficult decision. 

Hi Dragonfly,

 Nice to hear from you.  I'm waiting to hear when my end-of-chemo evaluation will be.  I have two more weekly treatments and then get a couple weeks to recover.  I'm really excited for the "time off", but hope to be able to enjoy it rather than fretting about the next phase.  I guess getting to that stage of making a decision is usually tougher than moving forward once it's made.  But at this point I am so immersed in the search for good information and the fears of making a poor choice.  I guess I'm prety well worn down from chemo as well.  Grrr.

I found the Pubmed website pretty helpful with my decision about chemo, but I'm having less luck with the rads.  It seems gray is just what it is...they really don't have enough evidence to make a clear conclusion.  That's why I'm hoping to hear more of what some of the doctors are advising and how they reached their opinions.

Sharkey 

Hi Pam,

 Yes, the long term effects are a concern, though even the short term ones are making me pause.  (With fair skin, I've spent my whole life being careful in the sun.)  The potential for skin trouble and more fatigue (How can one Get any more tired?!) worry me.  The scarring inside and outside, perhaps making reconstruction much more problematic or bringing on lymphedema and also the heart or lung area...I'm really torn.  The idea of a local recurrence is also pretty aweful.

My husband was pointing out that the doctors response to most questions about complementary treatments are something like...we don't have enough research to show the benefit.  But that seems also to be the case with the gray zone here.  Perhaps there is no good answer.

In any case, I appreciate hearing from you about the IMRT.  That's an excellent question when I go for my next consult.  They may have discussed that during the first, but I couldn't find it in my notes.  The details do seem to help with many of these treatments.  I'm glad to be able to benefit from peoples' experiences with their own treatment and decision making.

S