Follow-up treatment after DCIS mastectomy

Miyu · June 2010

Miyu · June 2010

Hello everybody,

I have a difficult choice to make. Two weeks ago I had a mastectomy for what was originally thought to be IDC, but the subsequent pathology report came back saying DCIS, with "possible" microinvasions. Intermediate grade tumor, of a large size: 8.5cm by 6.5cm. Hormone double negative, her2 positive. Sentinel lymph node biopsy revealed no problems.

So before the operation I was resigned to having chemotherapy, now the surgeon says that since it's DCIS I have three options:

1) Do nothing. This is what he'd usually recommend for DCIS after mastectomy, but the "possible" microinvasions are a slight worry.

2) Have the usual herceptin and chemo.

3) Have just herceptin. But he says that it's very rare to have herceptin without chemo.

I really have no idea what to choose. I'm 38 with two small boys, and I'm thinking that I might need to have herceptin and chemo "just in case" or I'll go crazy about that "possibly" thing.

Any advice would be much appreciated.

RegulJ · June 2010

Making treatment decisions is hard and overwhelming- I think we all can vouch on that.

Did you have clear margins?

For me personally I would want to do eveything possible to make sure all those cancer cells are DEAD.

GOOD LUCK!

sweatyspice · June 2010

There's a poster with the screenname Beesie who also had microinvasions. She always gives very reasoned explanations for her choices and the alternatives presented, but she hasn't posted in a while.

You might try sending her a private message, or searching for her posts which include the word microinvasion.

Otherwise, since I was 100% "pure" DCIS, I don't feel qualified to have much of an opinion on the issue, other than to do what feels right. Wishing you all the best!

cocoapuff · June 2010

Hi Miyu,

Sorry to have to welcome you to the club, but welcome. I am definitely not an expert on anything here but I did notice that your options seem to have come from your surgeon. After the mastectomy you should see a medical oncologist to see what they feel your risk is and how they want to you to be treated. The surgeon has done his part, now you will get the next steps from the next member of the team. I hope that makes sense.

Take good care and I hope you get the answers you need.

lisa

sweatyspice · June 2010

Just wanted to agree with Cocoapuff - this is really a discussion to have with a medical oncologist, not a surgeon.

mlrbelle · June 2010

I, too, had a large DCIS lump which was hormone negative and Her2 +++ w/a "microinvasion". Mine was too small to really quantify. My nodes were clear as well. I was 35 at dx. Did you have a unilateral or a bilateral? I had a very conservative (read: aggressive) oncologist by all accounts, who advised me that although he could put me on chemo and/or herceptin, I had had the "gold standard" of treatments (i.e., bilateral mastectomy). I also had very good margins. He explained to me that at this point, any additional treatment would be mainly to protect the remaining breast tissue, which I didn't really have anymore. Also, he felt that the side effects would outweigh any additional benefit I might get from any chemo.

Definitely see an oncologist to weigh these options with you as every case is different.

1965sally · June 2010

Hi, Miyu. It seems to my non-expert mind but from what I've learned, that if there were microinvasions, they would have either come off with the breast tissue or reached the sentinel node and have been detected.

I'm also curious radiation isn't one of the options. From what I hear it doesn't normally make you as sick as chemo, which is probably part of your thinking with having small children. I had DCIS, clear SNB, mastectomy and we talked about having radiation due to my somewhat close margins but finally decided it wasn't necessary.

Good luck!

Miyu · June 2010

Everybody, thanks for your advice. I've been learning a lot recently, and just talking to people on the internet helps me calm down a little.

My mastectomy was unilateral. But I kind of feel that just having one is pointless... maybe I should have done the bilateral thing.

I've talked to an oncologist as well as the surgeon, and I get pretty much the same answer. I'm told that there was no micro-invasions that could be found, however, there was evidence of "interstitial reactions accompanying inflammatory cell infiltration". (I have no idea what that means!). (The needle biopsy before the operation appeared to indicate IDC... the first mention of DCIS was after I woke up from the surgery. That's one reason I feel so worried). Therefore, he said that although nothing showed up on the microscope, it is possible that I could tiny tiny microinvasions. But since nothing is evident, he said basically doing nothing would be fine... and left the option for chemotherapy up to me.

I'm leaning towards going for herceptin only, and no chemo... but I'm changing my mind every few minutes! I need to decide something soon. Anyone want to give me a push?

Thanks again,

Miyu

laurakay · June 2010

I do have sort of a suggestion, but it's expensive, and you should do your own research or ask others to see if it would be worth it to you (I have a phobia of giving people advice!)--which is to seek a second opinion from Dr. Lagios, the DCIS expert in CA, who has a second opinion on pathology service (easily find this on the internet.) It cost me 500 dollars, but would have been worth many times that much. He reads your report, fast but thoroughly (got to me within days) and talks to you on the phone. It was the first time in three months that I actually understood my path report and what others had been saying to me, much less articulately, all along. It made all the difference in my decisions, which I feel utterly comfortable with now thanks to him. My surgeon was very impressed by him too, and the reading of my path report he did.

laurakay · June 2010

I just looked at my bill. It was closer to $600. Maybe some people can get reimbursed from their insurance (I'm not even going to bother to deal with that because I could MAKE 600 dollars quicker than I could get it out of them, with a garage sale or something, with all the hours of work that would require...)

psalms91 · June 2010

Hello, i got my diagnosis May 20th DCIS, Braca 2, i have opted for a bilateral mastectomy.I am 41 years old.I am now scheduled for a sentinel node biopsy on the 9th of july,since i am wanting reconstruction surgery.It seems as if my sugery will be scheduled sometime toward the end of July,am i waiting to long.I feel so uncomfortable at the breast that holds the DCIS and sunsequently my axillary area hurts.One of my question is that the medical doctors don't really know the extint of the CA,Can DCIS really exist with the symptoms that i am experiencing.Am i missing something,

MaryDee · June 2010

I was 38 with small children when I had treatment too. If there had been even a sniff of microinvasion in my pathology I'm sure my BS/onc would have thrown everything they've got at it. I think you also need to talk through how each option would affect your treatment possibilities further down the track if you were to have a recurrence. Taking an option now that might rule out a valuable course of treatment later is something you need to consider in your decision. Good luck, it's all very confusing, ask all your questions as many times as you need to until you find the answer that you feel is right for you.

Follow-up treatment after DCIS mastectomy

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