Mastectomy vs Radiation-any input?

Hi all, I'm hoping to get some input as I try to decide what comes next. I'm receiving treatment at Vanderbilt University Medical Center and as I'm coming to the end of chemo I'm trying to decide if I'm going to just go ahead and have radiation to my whole breast after treatment, or to have a bilateral mastectomy and avoid radiation. I had good margins with my lumpectomy and 2 of 7 nodes involved with very little tumor present in the nodes. I'm feeling very positive and optimistic about the future after the chemo treatments and feel that I have a good prognosis, but I'm trying to make a careful and informed choice. My tumor was in my left breast, BTW, but I have also had a diagnosis of "atypical lobular hyperplasia" in my right breast a few years ago and fear that I could have a future cancer there with all of my treatment focused on my left breast.

any input would be so appreciated.

all the best to all,
Adie

Adie,

One of my 9 nodes taken out  had what they called "isolated tumour cells" - a test was ran that showed the liklehood  of return was only 5% so the node was deemed insignificant - that combined with clear margins resulted in the dr's recommending no radiation. (I had a R side mastectomy -  two high grade tumours  - one of which was TN)  I guess each case can be different

Genetic testing sounds worth checking out if your time permits. I am starting that process next week

I am also nearing the endof chemo with just one treatment left.  I had three microscopic cells in the SN, all less than .2 mm, so technically negative.  My tumor was big (5.1 to 7 cm) and grew within less than a year. I did have a mastetomy and am now wondering if I should expect radiation.  It seems that it would be the most aggresssive route, and I want t his treated aggressively.  What is the normal protocol when a TN tumor is large, no SN.  I just want to push for the right choice.  Thanks,

I think radiation would be typical with any invasive stage 3 tumor.  I set up my meeting with the radiation oncologist while I was in chemotherapy.  I didn't even ask what the criteria for radiation were.

I know that my tumor was not over 5 cm.  My tumor size has always been a bit of a mystery to me.  I know that my mammogram looked really bad, like a 6 cm area affected in my upper outer quadrant (l breast).  I did not have a biopsy before surgery, but had both combined in one procedure.  Immediately after surgery, the surgeon told us (me and my husband) that he could tell from looking at it that it was not as big as they expected.  I had a solid cyst and extensive dcis (probably why the mammo looked so bad)..  When the pathology report came back my tumor was staged at 2, with no measurement given.  I saw three oncologists in the weeks after my surgery.  One (who I didn't end up going to) was really disturbed about the lack of measurement.  She called the pathologist who said he could not really measure the tumor as much was microscopic bits.  It is really hard for me to get a sense of what it was like, but I have recently looked at pictures of dcis and dcis with microinvasion.  I am thinking that my extensive dcis probably had microinvasion at various places along the duct and that the dcis was between 2 and 5 cm.  Who knows? But from what I understand, I didn't have a single invasive tumor that was T2 (2 cm - 5cm).  The oncologist that was concerned about the precise size said under 3 cm there was no benefit to radiation, and that she would recommend radiation for anything over 3 cm.  The other two oncologists basically said since we don't know what the size was, we will just be cautious.  My idc was a grade 3 and I had a 1 ml margin near the dcis.  I chest wall radiation, plus my im field and under the arm.  I did not have positive nodes.  I asked about this again earlier this year with my oncologist and he said nothing was found in my nodes (13 were removed).  My oncologist did make an offhand comment once that I got "more" (meaning treatment) than many others would for the same diagnosis.  

Thank you for all the input; this is very helpful. Steve, I have already gotten a second opinion, and I will be getting a couple more. So far, I am feeling that I will be most comfortable with a bilateral mastectomy and no radiation. I am being treated at Vanderbilt University Medical Center and will be getting another opinion from the tumor board at UCLA, as well as from another surgeon in my area. An outside radiation oncologist that I met with was very adamant that I need radiation, but his aggressive approach has not been supported by anyone else I've spoken to, and I am getting some good support for the mastectomy as an alternative to radiation to the breast that has already had a lumpectomy. Although I am BRCA -, my paternal grandmother had breast cancer, as well as ovarian, and my sister is an ovarian cancer survivor. I will be happy to stop worrying about this. But really, all of the input here has been very helpful-thank you all so much.

Adie

Hi, I hope you have some peace of mind deciding. I have gotten a lot of feedback on my considerations and so far, the only push toward radiation as opposed to bilateral mastectomy was from a second opinion radiation oncologist. He was very radical and said I needed to radiate my lymph nodes as well; my current provider's radiation oncologist said she would not radiate nodes unless requested to by the patient. A specialist I spoke with said that TNBC is less of a risk of local recurrence than distant metastisis, so radiation to nodes was unnecessary, and frankly so is mastectomy to treat current issue, but based on young age, family history and in my case a previous diagnosis of atypical lobular hyperplasia in the other breast, bilateral mastectomy makes sense for these other reasons. Also, I want to do an expander reconstruction with implants, and that would be unlikely to be possible after radiation.

I don't know much about flap proceedures; I think you can do a double flap though. It can depend on how slim you are; if you are quite slim, there might not be enough tissue available.

One thing I know for sure, getting second and even third opinions has helped me form my plans and feel good about my choices. I am waiting for an outside tumor board's opinion as my final consideration in the surgery vs radiation decision, but based on everything I've heard so far, I'm planning double mastectomy with expander to implant reconstruction and I'm feeling very good about it, even kind of excited to see my new look and to be able to finally go braless when it's all done.

good luck to you in your decision. Let me know if there is any other info from me that would be helpful.
a.

The only person who knows the right decision is you first and foremost - but I can tell you the reasons I made the decisions that I made and also, I agree you should get the genetic testing