Should I get radiation after mastectomy?

TNBCat37

My radiologist wants to give me radiation, however I'm reluctant to do so.

I had 2.6 x 2.4 x 2.1 cm Triple Negative Cancer tumor, grade 3 in the right breast this Feb. Unfortunately, 5 months chemo didn't kill all my cancer cells. I didn't get pCR. There's 5 x 5 mm residual tumor burden at the time of surgery. The surgeon did the double mastectomy for me said I didn't need radiation. My closest margin is to the chest wall. The margin is 8mm. Clear. Also luckily, I don't have LVI lymphovascular invasion), a term means the cancer cells haven't spread to my blood vessels and/or lymphatics yet. Usually if you have LVI, the radiation will be given, because surgery can't clean them up.

However, my radiologist argues to give me radiation because: 1. I'm young (38 yr old) 2. The tumor was abut chest wall, although it didn't reached the chest wall yet, and the margin at surgery is very clear, but my radiologist still worry there's chance that the cancer comes back to my chest wall 3. There's also 1.2 cm DCIS in the breast, which is close to the 2.8 IDC tumor, altogether they encompass 4 cm (actually altogether they are 5cm before I had chemo, chemo shrank the DCIS from 2.5 cm to 1.2 cm). 4. the radiologist saw my skin got thickened and red when I first came to see him in March before I started chemo. So he suspects there was cancer invaded into my skin, although he put the thoughts to the back of his mind later on. I could argue it's because of the biopsy. I'm allergic to adhesives. The stereo strips after the core needle biopsy made my skin itchy, red and having blisters.

I'm reluctant to get radiation because of the game plan for reconstruction will be totally changed if I have radiation. The skin will be burned. It's inevitable. My Plastic Surgeon already said he does not do any implant based reconstruction after radiation because the failure rate is so high after the skin is burned and the blood supply is just isn't much there. There left only 2 choices for me: 1. get DIEP flap from my abd to transfer the fat tissue to my breast. But I'm skinny, I don't have much fat at my stomach. Plus, I saw people show their DIEP scars on youtube, it's horrible, horrible!! The long and ugly scar is from one side of hip bone to the other. 2. I get a robot operated surgery that harvests my back muscle to fill into my breast, plus they put a small implant in underneath the muscle. The scar would be smaller than the DIEP flap. But it is still obvious and vertical on the back. Plus, the back muscle won't grow back again. I'm afraid that I won't be able to play tennis, badminton, golf, piano etc... all the things I enjoyed before this cancer journey. Plus, even the 2 choices I am left with, my plastic surgeon only agrees to do those 6-9 months after the radiation finishes

I'm only left with 2 weeks to decide whether to do radiation or not. I know we are not doctors, but I just need your input. Do you know if most people don't or do get radiation after mastectomy? If they don't, did they survive the 5 year milestone, any recurrence in the chest wall? Huh, it's such a hard decision.

WinningSoFar

This is just my opinion, but if I were in your place, and knowing what I do know now, I'd follow my radiation oncologist opinion. I would not choose cosmetic concerns over recurrence concerns. I had a new breast cancer (trip negative, inflammatory) in the same tumor bed as my original breast cancer (ER+, PR+) 13 years before. Is it a recurrence? My oncologist doesn't think so, but who knows, but it's quite a coincidence. However, I do have to admit that I did have whole breast radiation 13 years ago also.

hyphencollins

I'm wondering if you can get a second RO opinion and a second plastic surgery opinion? I know time is short but you probablyhave enough time to consult with others. FWIW, I'm getting implants after radiation. It's not ideal, but I had positive margins after mastectomy and a positive lymph node so it is what it is. I also know someone else who got implants after radiation , so there are plastic surgeons who do it. The one thing is I did have to wait 6 months post radiation before implant surgery...which is in 2 weeks so I can't really say yet what the outcome will be... like you I also can't do DIEP and honestly I'm too scared to do the latissimus dorsi surgery. Best wishes as you make this decision.

TNBCat37

Thank you! what kind of reconstruction you did after mastectomy and radiation in Dec 2014? I know medical concern should be valued higher than cosmetic...but I haven't given up trying to find a perfect solution from both worlds. I may have to before my deadline to make the decision. :-(

TNBCat37

Thank you! I'll try to get a second opinion. I see you underwent radiation. Have you chosen a plastic surgeon, and find out if implant reconstruction can be done yet? We're in the same boat that DIEP and latissimus dorsi surgery probably won't work for us.

inks

So sorry you are facing a difficult decision. I was not happy when I heard I needed radiation either. I was so bummed I went to get a second opinion. The second doctor was great at explaining and clearly pointing out the reasons I needed it. You could go back to the first radiation onc and have her explain in detail why you should have radiation or you could get a second opinion. I think your age and TN status are the main reasons.

My PS was not thrilled about doing the implant reconstruction but he remained positive. I had to wait to get the implants and they did not fill the prophylactic breast but overfilled the side they wanted to radiate. The reconstruction on the radiated side does not look great and is hard and tight, I'll go back this fall for a revision.

If you wish to avoid invasive reconstruction and are willing to accept that the cosmetic results with implant and radiation are not great then maybe you are able to talk your PS into implants. But it may be easier to just find a different PS.

KBeee

instead of DIEP or Latflap, some PSs are now doing Gsp glap which uses gluteal skin/fat. I am having rads with implant in place due to recurrence and PS said if skin fails and implant comes out, I am not a candidate for DIEP because I am too thin. He mentioned lat flap, which I will not do because I am a firefighter. When I see him again after rads, I plan to ask about the gap flap. I have 2 friends who had it done in Texas with great results. I do not think my surgeon does it often, but I sure plan to ask. Just wanted to throw that option out there. If your PS does not go it, you may need to travel to have it done

hyphencollins

I've had the same PS since diagnosis. The positive lymph nodes and margins weren't anticipated, I had the TES put in at the mastectomy when we were hoping I'd just need Tamoxifen post surgery. My PS doesn't have an issue with doing the implants, she just said it is riskier and she waits 6 months post rads to do the exchange. So at this point I've had the darn TES in for over a year since I also ended up needing adjuvant chemo too. How are you doing with all this, the decisionmaking process can be so draining, hang in there.

TNBCat37

I read here that "Buttock free flaps are not first line reconstruction options. The gluteal free flap reconstructions are not for most patients and do not "lift" the buttock. Rather, they flatten it and create an asymmetry to the other side. Their use should only be in patients who have no excess abdominal tissue, no available latissimus flap, and have been radiated so an implant won't work. Thus, their use is rare and more for salvage situations" http://www.realself.com/question/gap-flap-breast-r...

But what can we do, when options are running out? :-(

TNBCat37

Thanks for sharing your experience! It's tough to make a call. Some update:

1. on Sept 11, my radiologist called me that my surgeon talked to him, and suggested him to present my case in the group meeting among all the breast cancer radiology oncologist. He presented my case. There were 2 doctors opposing radiation, 1 abstain, and another 3 doctors favoring radiation. The risk factors of not doing radiation are: 1). my tumor was close to the chest wall 2). the tumor felt like a 5 cm one, when I first came in to get treated. On the mammogram, the span was 5.1 cm if including the calcification situated besides the tumor. So there is a saying that I could be a T3N0 staging type instead of T2N0 3). Triple Negative type 4.) I'm young, 38 yrs old. 5). no pathology Complete Response

2. My radiology oncologist then asked an outstanding diagnostic radiologist to look at all my imaging in the past 5 months. That radiologist draw the conclusion that it's fair to say I had a T2N0 staging, not T3. She can tell from my scans that the tumor was close to the muscle, but never grew into the muscle, the soft tissue in front of the muscle, nor the skin. So that crossed my risk factor of no. 1 and no. 2. My radiology oncologist now left the decision to me, whether to do radiation or not.

3. I went to another cancer center in New York City on Sept 21 for second opinion. The radiology oncologist there thinks I can avoid radiation. She agrees that it is a big deal to remove my back muscle, and the fact that I don't have lymph node involvement and LVI is enough to push me off high risk group. She further states my recurrence rate is below 10%, in contrary to 18.6% I heard from my Texas doctor. Radiation can lower that to 4%, but losing my back muscle is major. She thinks my own immune system can fight the cancer without radiation.

But the problem is I started to worry again after someone just reassured me I would be fine..... :-( What is wrong with me?

muska

Hi TNBC, your profile reads you had tissue expanders placed when you had your BMX in August. What happened to those tissue expanders? Did you get them filled? I had exchange surgery for silicone implants before radiation and everything turned out pretty well. Many PS and institutions prefer to put permanent implants in and radiate after. Sloan Kettering is one of them, I am sure there are many others.

If I understand correctly, you consulted several radiologists and most of them recommended radiation. You stated the reasons yourself in the very first post on this thread and those are quite serious reasons. Also, being triple negative you don't have the option of hormonal defense.

TNBCat37

Hi muska,

Yes, you understand it well. Gosh, I just came back from New York Yesterday, was at the radiologist office of Sloan Kettering. They didn't tell me the option of radiation after the implants in. They should let me know this option! I'll call Sloan Kettering's doctor tomorrow. If that's the case, I'd rather do the 2nd half of my treatment (radiation + reconstruction) at Sloan.

Regarding the hormonal therapy, there's a new update of my biomarker status too. At my request, my medical oncologist ordered retest of ER and HER2 status. Probably not surprisingly, they changed. I'm now 15% ER positive, and completely HER2 negative. This made my medical oncologist offer me hormonal therapy. According to her, most ER positive patients are 70-80% positive, and hormonal therapy works pretty well on those patients. 15% still makes me positive. She'd like me to try hormonal drugs, but she doesn't not guarantee it could be effective.