Electing to do or not do radiation if in "grey area"

Young,

I too was in the grey area for radiation.  My tumor was 1.7cm and I had 2.5mm in the sentinel node.  Had a bmx which I thought would keep me from having radiation.  But I had 3 opinions on radiation, all of whom thought that the one positive node combined with my age (39 at diagnosis) meant that they thought I should do radiation.  They did say though that I was in the grey zone and that they would support me whether or not I decided to do it.

I really struggled with the decision but at the end of the day decided that I needed to be able to say I did everything possible.

I was very worried about what it would do to my implant (they gave me as high as a 50% chance that my implant would be negatively impacted) but so far it's fine.  I am 3 months out from radiation and my PS is VERY pleased with how it looks but said we won't know for sure how it will really look until 1 year out from radiation.  I did have some nasty burns at the end but now no one other than my docs and I could tell anything had happened.

And because I had 18 nodes removed they did not radiate my axilla which would have really upped my chances of lymphedema, so I have my fingers crossed that I won't get that.

I did my exchange to my permanent implant prior to radiation which is just how my plastic surgeon does it (I'm at Memorial Sloan Kettering).  According to my RO (not at Sloan) it seems to be a matter of preference based on the PS with no impact on the final cosmetic outcome. On these boards though I see that I am in the minor on this one.

One thing I didn't realize - my doc now will not do nipple reconstruction surgery - only a 3D tattoo.  He said the combo of the thin skin from the MX and the fact that it is radiated skin means that I could end up with an open wound from that surgery that will not heal.  I saw pictures and the tattoos look ok but I didn't realize before radiation that I would be limiting one of my reconstruction options.  Also, he has basically said that even if my implant does start to look worse because of radiation (hardens or goes higher than the other one) he is unlikely to want to do additional surgery on my radiated side.  Sounds like he really doesn't want to mess with radiated skin.  So I am now hoping for the best over the next 6-9 months!

I found it very frustrating that there was a clearer answer on whether or not I should do radiation and I really struggled even through the first week or so of radiation.  At some point though I convinced myself that I had made my decision and I needed to be ok with it.  Not easy but I'm getting there

Best of luck with your decision,

Rose

I also fell into a grey area - one positive node but with no extra nodal extension, Grade 3 tumor, excellent margins.  There was no question about chemo - I definitely had to do that one.  Rads was different - I was in that dreaded grey area.  I went to 2 consults with different rad oncs, and also did a lot of research on my own in medical journals. I was discussing all this with the one rad onc I really liked and asked if she could give me some figures.  She told me that of women with my same status, 90% are radiated for no reason.  85% will not recur, rads or no.  5% will recur, rads or no.  Therefore, there was only a 10% chance that rads would benefit me. 

After weighing all the pros and cons, the risks and benefits, I declined rads.  One rad onc was very distressed and told me that I was making a mistake to decline rads.  But this was also the same rad onc that never mentioned lympedema as a possible side effect of rads, and who wanted to do not only the chest and axilliary area, but also the nodes around the breastbone even though my tumor was on the outside upper quadrant, so I really didn't have faith in his pronouncements.  The rad onc I liked said she was comfortable with whatever decision I made - she'd be comfortable if I opted for rads and comfortable if I declined.  That was 5 years ago, and I'm still very comfortable with the decision I made.  But each of us must make our own decisions, and gauge our own tolerance for risk v. benefit.  What was the right decision for me might be the wrong decision for someone else.

I would get consults with a couple of rad oncs.  Also, do research in credible sources, like medical journals.  Then take a break of a couple of weeks (if time allows) and decide to not decide during that time.  Set a date a few weeks into the future and tell yourself that you will not make a decision until that date.  That will give your unconscious time to process everything you've learned.  Make your decision on that chosen date.  Revisit that decision in a week.  If your gut is telling you that it's the right decision, then it's the right decision for you.  In the end, all you can do is make the best decision you can with the info you have on hand.  Once you've made the decision, don't look back.  You've done all you can.  

hi there

i had a 2.1cm tumor (or so - dont know bc i did neo adjuvant), LVI, aggressive pathology (her2 grade 3) and my RO wanted me to do the rads.  i struggled with it and they did bring my case up to the tumor board who said i could go either way.  The ended up doing chest wall and only level 1 axilla only.  I am still not sure if i made the right decision as it messed up my recon and i worry about the long term complications.  But you are scared and are in a "throw everything at it phase".  Funny when they thought i was staying with the lump no mention of the risks was given, once i was in the dreaded "grey" area all the risks were mentioned.  I don't know, so tough!!!!

if you do decide to go ahead w rads you may be one of the lucky ones with no issues....there are lots here!

My situation is considered a “gray” area. My oncologist and radiologist both said no radiation, initially.  After the mastectomy and chemo the oncologist said I probably didn’t need it. Of course, the radiologist said he would suggest it.

It improves my chances of not having a recurrence anywhere in my body by about 3%. It improves my chances of not having a recurrence in my chest wall or lymph nodes a little more than that, but less than 10%. The reasons they wanted to do it are my age (33) and the one positive node.

My question was: Is it worth it? Is it worth 5 days a week, for 6 weeks, potential reconstruction problems, side effects, just to have a small percentage added to my survival rate? I say no, but there is that nagging feeling that I’ll regret it.  An hour later, I still say no. My husband says yes, but he’ll support me no matter what.

I decided to say no. I'm going to take the hormone therapy for the next 5 years, go to my check-ups, and put cancer behind me. It is such a difficult choice, but I feel that no rads is the best choice for me. Good luck on your decision.

I think you made the right choice for yourself.

There is no guarantee for any of this, radiation doesnt' mean it wont' come back though it does reduce the recurrance rate. Also compromises DNA of healthy cells, the skin for possible reconstruction down the road, and other possible side affects women don't feel until 3-10 years later. I'm more worried about doing radiation than not doing it .. 
I know my body, am extremely sensitive, and would worry about side effects besides worrying about the cancer recurrance. Its all worrisome but whatever lets us sleep at night.

I was in a very similar situation, young at diagnosis (32), high grade and aggressive tumor near the chest wall. When the first rad onc I saw recommended rads, I went for a second opinion. The second opinion rad onc said the same as you are here, we are in a "gray area" but she felt my chance of reoccurance was in the low teens, and that getting rads done would reduce that by half. That convinced me to go ahead and do it.

I would encourage anyone who is on the fence, to get a second or even third opinion from a radiation oncologist.