Her2+ and No Radiation?

I decided that I would decline RADS even if it was "advised" d/t difficulty with reconstruction and skin issues, and my fear of long term effects. I am a Nurse, so I think a lot, and my lump was right near my heart. It is a very personal decision. I decided to do a BMX because I did not want to do RADS, and I admit I am vain and did not want my reconstruction to be affected by it.. It turned out that I was node neg, so it was not standard of care in my case anyway. If it was however, I would have declined.

I decided that I was going to make the best choice for myself and have no regrets, no matter what happens next. We do the best we can.

I was also like Special K. Told not needed by BS & MO. I had good margins and ALND.

I did not recieve a SNB and I still regret it to this day I did have a pet scan no nodes lit up but there could be micromets from my research my drs are sure there is no lymph involvement but you never know.I am also hoping for a pcR after 2 treatments I no longer feel my lump which is also over my heart.. I asked my oncologist about radiation because I wanted to do it and she said only if I did a lumpectomy but I plan on a mastectomy..due to my nodes not showing any cancer I will not recieve radiation unless something changes during surgery and I do happen to have a positive lymph node. I guess what I was wondering is if you did have cancer in a node and it shows no cancer during surgery is the cancer more likely to come back in that node I just want to do everything possible to keep this from coming back ever again so many what ifs

sugarcakes - the rads decision for me was not due to being able to take anti-hormonals, but rather because I had ALND.  At the time I was treated more docs started to leave the nodes intact after a micromet in the SNB and radiate the axilla instead.  Even though I only had 20 IST (isolated tumor cells) in my SNB, so not even a micromet, both my SO and MO did not feel it was appropriate with Her2+ disease not to remove levels 1&2, which was done in a subsequent surgery five week later.  They were insistent that I have the remainder of the nodes removed, which to them, negated the need for rads.  It is important to note two things - my SO was one of the pioneers of SNB and did not regularly do ALND on all patients - in fact, does the opposite, this was specific to the Her2+ aspect and his experience with many other patients.  He has maintained a database with info for every patient he has treated in the 25 years he has been doing this, so has a personal statistical point of view for his decisions.  Also, they were correct about doing it, in my case, as they found a much larger node further up in the axilla, which is unusual, that may not have been eradicated by chemo/Herceptin/rads - his estimate was a 60% chance when we discussed it after it was found.  I also had great margins from BMX due to optimal positioning of my tumor in the middle of the breast tissue so they did not feel I needed rads to the breast either.

specialk your posts are very informative I have been reading many if them as I am triple positive and just started my cancer journey..you had a ALND what let you to this decision? I am afraid they will not take enough nodes out but don't wang any unwanted side effects for doing too much

steph - it wasn't exactly a decision that I made - both my BS and MO were insistent and immovable.  I had already had BMX and SNB - my SNB was declared negative in the operating room, with post-operative pathology revealing the cancer in the SNB afterward - this happens infrequently. If I had refused the ALND I think it would have been likely that I might have had to find other docs to continue treating me, because I would have been refusing their very insistent recommendation.  I placed my trust in their judgment, which proved correct, as I had an additional large positive node further up that was the size of a stage 1 breast lump. If I had left it, and counted on chemo and rads to treat it - it would have been like leaving that size Her2+ lump in the breast, never removing it surgically, and hoping systemic treatment and radiation would be enough. 

SpecialK--wouldn't they have discovered that large positive node at your BMX?

Stephmoen - it sounds as though we had similar type tumors.  Mine was very high at the 12:00 position, it was actually outside of mammo range.  Nothing lit up on the Pet scan, but due to the close proximity of the tumor to my collarbone, both the BS and MO were concerned that if there was to be a local or regional recurrence, that it might occur in the lymph nodes under the collarbone, which are basically inoperable.

SugarCakes - yes, 9 nodes were negative, therefore no RADS to those.  The SN did look questionable on the Pet, but since I was getting chemo (TCH x 6, this was 2012 and pre perjeta) and RADS anyway, there was no SNB done.  The superclavical RADS were just done due to the location.  There was also some concern about the skin because the tumor was so close and I had skin sparring surgery, which my BS was comfortable with. 

mardea - it makes sense for an advance SNB in the case of immediate recon and the question of rads if nodal status is unknown, and I have also seen it done, and would encourage it prior to having neoadjuvent chemo.

Thanks, Patty, Amy and Marlene! It does feel good to be done…even better when I hear "it'll be a breeze compared to chemo" when discussing—well anything! LOL

Amy…I'm glad I kept the tags on everything I bought! One maxi dress I got has fabric that may be too thin if the TE's turn out really lopsided!

I do have a question about what kind of bra I'll need for right after surgery. Won't I be all bandaged up and not have to worry about a bra for a while? Just trying to plan what to bring to the hospital.

Patty—I do still have those annoying eye twitches! This morning as I was trying to put my mascara on, it felt like I was putting it on hummingbird wings.

Marlene…sorry you had to miss the party and hope you and your son can have your own celebration when you're feeling better. I saw on another board you're having a SNB prior to surgery? Makes perfect sense! I know I would want to be prepared going in to surgery what I was going to get, DIEP or TE's!

--Lorie

Hi to everyone, I haven't written anything in these forums for awhile as there have been too many things going on for me to keep up. Since my DH is now working on a temporary job in Wash, DC area for approx 1 yr, I decided to have my surgery there so he could be with me during all of this. This required changing to all new providers, including MO (for herceptin), PS & BS. My new BS is wonderful. I also really like my new PS. I wanted a DIEP flap but don't have enough belly fat so for now am going with expanders & implants. I've also met with a RO, who it turns out also knows the RO I saw in AZ. Small world! I've been in the DC area for a little more than two weeks & have had so many appts my head is spinning & now it's only 6 days until surgery!

Anyway, as to the radiation question - both ROs said if I had a pCR then radiation would be offered but optional. They said it would decrease the possibility of recurrence from about 10% to 3%. If I don't have a pCR then I will need rads for sure. I was hoping to have an idea of the answer to that already since I was originally scheduled to have the SNB 2 weeks prior to surg if I had a DIEP flap. Since that didn't pan out, the SNB will now happen on 6/29 when I have a BMX with expanders.

I've spoken with 4 MDs (2 surgeons, 1 Internal Med/Hospitalist, & 1 Cardiologist) about the question of having rads with a pCR. They all agreed that the risk for cardiovascular complications in addition to lung complications years down the road was greater than the benefit of a decrease in recurrence rate by only 7%. Of course, like everyone else, I'm hoping for a pCR, and in that case I've pretty much decided against rads.

Right now, I'm just trying to think about getting through surgery, and it's scary. I've had surgeries inn the past but none that would alter my appearance other than a scar! This feels very different. Ativan definitely helps to decrease my anxiety level. I just wish I knew what the new normal is going be like!