DCIS Update

Caber224

Just wanted to share the good news from this week. After 6 months in the NCIclinical study with Letrozole, my lumpectomy showed no evidence of disease in the tissue samples read during surgery, with final results due next week. I had two radioactive seeds planted to mark the original 4cm area of DCIS and the margins were clear.

I feel very lucky to have avoided my originally scheduled double mastectomy, and to be living so close to an incredible medical institution.

I meet with a medical oncologist next week and I am assuming I will be advised to take tamoxifen, but I will be opting out of radiation if it is even offered at this point.

Thanks to this board and the wealth of information it offers women facing this diagnosis!

nonetheless

Congratulations!

Why would radiation even be offered if you had the seeds implanted? I'm still learning about this stuff but it would seem you have achieved the same thing if you had seeds.

Caber224

The seeds were implanted as markers of the area of calcificationsfor the surgeon and were removed during the surgery.

simsoka

Hi Caber224, That's wonderful news, and very encouraging. I was recently diagnosed with grade 3 DCIS, 3cm and am awaiting my MRI results and recommendations for surgery which I do not want to have. I've looked into the clinical trial you participated in; it may be a possibility for me (though a two-hour drive to a participating hospital). I understand you had to have the lumpectomy as part of your participation, but how much tissue did they remove if there was no evidence of DCIS? Also, do you have any sense of the broader results for this trial?

Caber224

Simsoka, sorry to hear of your DCIS diagnosis. It is not easy because there are so many unknowns with this disease. The surgeon removed the tissue identified in the original lesion. While no DCIS was found in the frozen slides during surgery, the final pathology did find 5mm of DCIS, but it was grade 1. A vast improvement from the original grade 2/3 4cm, but I was hoping for no evidence on the final path as well. The surgeon told me that my results are typical for what she has seen in the trial. Letrozole was clearly effective in reducing the amount of DCIS in my case. I am now in the process of making a decision about follow up treatment with input from a multi disciplinary team. I felt exactly as you do about surgery when I was diagnosed last summer, but honestly, the lumpectomy feels like a win to me. I have a strong family history of breast cancer, so doing nothing was not an option for me. Take your time and think about the various treatment options. Consider the two hour drive to the center offering the research study because you are seen at the beginning of the study, one month after starting the drug, three months and six months if the mid point tests show no progression of disease. Good luck as you make your choices in the days ahead.

In response to your other question about Letrozole and Black Cohosh - Letrozole prevents the body from making estrogen. I was told to stop taking black cohosh during the study, so I cannot speak to the effects of that drug

simsoka

Caber224, even if it's not all gone, going from a 4cm lesion to 5mm is wonderful! that I should be so lucky. I'm going to look into the trial. Did you have any side effects from the letrozole? Are you still on it?

Caber224

I had minimal side effects from Letrozole. Minor joint pain, mild fatigue - totally manageable. One of the decisions we will make with the medical team is whether I should stay on Letrozole or move to Tamoxifen for the next 4.5 years. Letrozole can reduce bone density so I have a consult with the Bone Clinic as part of the decision process. So I am off all drugs right now, but expect to begin again next week after the team weighs in.

There were people who had complete resolution of DCIS in this study. That could be you! I was close : )

simsoka

Hi Caber224. I did contact the Boston hospital today and the trial closed on Monday. Bummer! I asked if they could squeak me in but no. He did suggest I might find a doctor who would prescribe the Letrozole for me. I also looked into the black cohosh trial which has a location very close to me (Yale), but it too had closed on December 31. My timing is not too good.

So you need to be on some sort of hormone therapy for the long term? Why is that?

Caber224

The long term hormonal therapy is to reduce the risk of recurrence over 5 and 10 years. Again, a tricky decision in my mind with no clear answer. If I did not have such a strong family history of breast cancer, I would have a hard time saying yes to the adjuvant radiation or hormonal therapy but at this point, I just am trying to avoid having to go through this ever again.

simsoka

May that be the case for you (never having to go through this again). And thank you for the info. Very helpful.

april485

Hi Simoska,

Sorry you could not get in to either trial. I was the person that talked about the black cohosh trial and how my lesion, thought to be 2+cm prior to the trial, ended up being 5mm upon lumpectomy pathology report. I did not know it was closing at the end of the year! Did you ask about a second phase and if it will have one, the start date? You do have time with DCIS before having to commit to treatment. Hugs to you!

Caber, so glad to hear that your letrozole trial shrunk your lesion as well! I am taking letrozole (was taking exemestane for 2.5 years but side effects became unmanageable) and hoping that it will keep the monster at bay so to speak. Hugs moving forward.

simsoka

Hi april485, just saw your latest message. I did not ask about a second phase for the cohosh trial, but I did get an email from the nurse in charge which did not indicate any options for now or in the near future. I'm continuing my investigation, though. I visited a naturopath today and will get a second opinion with another surgeon tomorrow. She may know more about the trial (it's nearby at Yale). So I'm taking a bit of time, not a lot, but I want to make sure I'm making a decision based on thorough investigation. I kinda like these body parts. Don't want to see anything happen to 'em if I can help it!