DCIS 11/30/18, in Comet Study but Considering Lumpectomy

BWH5

I was diagnosed 11/30/18 with DCIS in left breast. Two areas. Quite large. 6.9 x 4.4 x 6.1 cm. And .7 cm from nipple. Grade two. ER & PR positive.

My surgeon feels like a lumpectomy may not be an option due to the size but is willing to try it as is the plastic surgeon. Plastic surgeon plans on oncoplastic surgery and reduction of the right breast. With oncoplastic surgery I have been told if the margins are not clear I will have no choice but to go back for a masectomy.

I also was told I would do 16 rounds of radiaton after surgery.

I do not want a masectomy. And if I have to have one the surgeon has also said a nipple sparing surgery is most likely not an option.

I am a patient at the Stefanie Spielman Center at the James, OSU.

I was offered the chance of participating in the Comet study for DCIS. I could not decide what to do so I opted for the study and found out two days ago that I am in the Active Surveillance group. I would have a mammo every six months and could take meds such as tamoxifen if I want. I have an appointment with the medical oncologist in a couple of weeks to determine if I will do hormone therapy either in the Comet study or if I opt for surgery. I have not seen a medical oncologist yet.

I am worried about the Comet study since I have grade 2 or intermediate dcis. And because it is so large. I feel like if if I wait and the dcis grows larger I will have zero chance of a lumpectomy. Right now it is aalready a small chance.

I am also worried there is a higher chance of it becoming invasive since the size is so large. I don't want to end up having to go through chemotherapy.

Is anyone else participating in the Comet Study?

Has anyone else had such a large area of DCIS? If so what did you do? How did it go?

Has anyone else done the oncoplastic surgery immediately after the removal of the DCIS?

I have so many questions. I have five children and my husband of 23 years was just diagnosed 7/5/18 with CLL Leukemia after going into ER for a hernia. 2018 was not a good year for us.

Any advice, help is appreciated.

Thanks!

Salamandra

BWH5,

Hiya, it sounds like a tough decision. As far as the size, I would just say, some of us who had invasive breast cancer also list the size of the DCIS found on our profiles. For example, I had 1.8cm tumor and 3cm DCIS, which was more than my doctor expected to find. That tells me that the correlation between size and turning invasive isn't necessarily obvious. Maybe the fact that your DCIS grew twice as large as mine and still hasn't started even the tiniest tumor is actually a good sign and not a bad one. I'm curious if your doctor said anything about it, or if you ask them what they will say?

To me, active surveillance under the scope of a study sounds like a great response to DCIS, especially with everything else you're dealing with now. The big question I would have is - how is your health insurance now, and how is it likely to be in the future, and how is that impacted by the study? Like, if you have great health insurance now but you catch invasive cancer in 5 years and by then you have crappy health insurance, will the study cover your treatment costs for surgery/radiation etc?

Another question might be seeking out a second opinion on lumpectomy, if you haven't already. Like if you had multiple doctors telling you there's a good shot at a successful lumpectomy, that might lean you in a different direction than if you had other doctors recommending against it.

Good luck! To some extent, this is a hard decision because they are probably both really good options, and whatever you choose, you can feel good about.

BWH5

Thanks for the reply.

My insurance is very good and I expect for it to be the same in five or ten years. At least I hope so. The study only pays for the extra six month mammogram every year. They will not pay for anything else. No biopsies that may be needed, no hormone therapy, nothing if I get injured due to the study, no surgeries of it becomes invasive. Just the sixth month mammo.

I have not had an second opinion but have considered it. Not sure where I could go for one but need to look into that. The NP told me that most of the other doctors there at The James would not even consider trying a lumpectomy on me. That my BS is most likely the only one who would attempt it. She also came highly recommend.

Yes, if I was told a lumpectomy was a definte possibility I would have most likely went the surgery route. At first diagnosis I was ready for surgery until they started writing off the lumpectomy.

Thanks for the help.