Topic: Has anybody decided to do excision only? Or active monitoring?

Feb 8, 2020 07:59AM - edited Feb 8, 2020 08:02AM by at6sand7s

I just had an MRI and there isn't evidence of a multifocal or multicentric disease--so just the single area that was found in my mammogram. I think I might be a lot older than you are though--I'm 65. I don't know much--but it sounds like that's a factor that needs to be included when making the decision. I also got genetic testing which was negative. My doctor really wants me to have radiation--but I'm thinking of asking for wider margins to ensure clean edges--and then just a little reconstruction because the location of the DCIS would make removal of breast tissue really noticeable. I've been in contact with a few ladies I know who have gone through radiation--it doesn't sound as bad as I expected, but they all complained loudly about the hormone inhibitors.

Feb 23, 2020 05:40PM Khakitag wrote:

at6and7s: I am a bit younger, 48. I met with my MO and of course, she strongly suggested tamoxifen, if nothing else, at least a low dose. I still refuse. I went armed with a bunch of questions, some of which she answered, others that nobody in the medical community seems to have an answer for. This dx is quite frustrating I was researching and second guessing myself so much I finally decided to take a break from thinking about if for a couple weeks. Just now getting back on this website. My MRI is scheduled for a week from now, and I’m really hoping that’ll clear things up for me.

Apr 24, 2020 12:22PM - edited Apr 24, 2020 12:29PM by at6sand7s

Since I'm not an expert in any of this stuff, I can only talk about my own experience with my own diagnosis. I can see that most of the ladies on this thread are what I (at 65) would call "young". From the research I've read--I do believe that if I were the ages y'all are--I would probably be more, rather than less, aggressive. In actuality, I got a second opinion and ended up taking a more aggressive route myself.

OldOakTree--my MRI was before surgery to make sure the mammogram didn't miss anything important. I went to a breast surgeon at very well respected cancer treatment hospital. After the genetic testing and MRI, she suggested I have a lumpectomy with radiation and hormone therapy. She told me that the area was still small and only had one focal point--and that mastectomy was not necessary as long as I followed up with the other therapy. I told her that I didn't want radiation or hormone inhibitors. Please understand that I am not saying those are not great therapies for other people--it was simply a choice that I made for myself.

So the choices I had were to go with this surgeon and get a lumpectomy +additional therapy (she didn't offer me anything else), just monitor, or go get a second opinion. I decided on the second opinion. My new surgeon was willing to offer me a range of choices, but he explained to me that if I didn't want additional therapies, then lumpectomy was not a good choice. He explained that until they pull out the breast tissue, and run the pathology--there's no way to know if the external tests are telling the whole picture. That's why they follow up with radiation and hormone therapy--because it's just too easy to miss something.

I decided to get a nipple-sparing mastectomy with immediate reconstruction and no additional therapy. With the cancer so early, I figured that this might be the best time to save my skin and nipple. However, my surgery was scheduled during the pandemic, in a city considered a hot spot--but being a small private hospital, they were willing to move forward. Their stance was that cancer surgery is not "elective". The trip there and back--is a crazy story for another time, but I had my surgery done on March 24th. My surgical team, removed my right breast and reconstructed it with my own tissue harvested from the belly.

I'm healing well. I have to go back for phase 2 in a few months so that they can match the two breasts and fine tune the scars. However, the breast looks natural and and I feel really good about both the medical and cosmetic results. The abdominal scar is very long, but hopefully as it heals it will improve.

After the surgery, the oncologist came in and talked to me about the pathology. He said yes, there was the area of dcis that showed in my mamo and mri. I had calcifications there. But he told me that there was a lot more atypical hyperplasia in other areas that would not have shown up. He told me that my decision for mastectomy turned out to be the right one for me. Now it's got me thinking that I should have just done them both--eek.

I am 4 weeks post op--and I'm starting to feel more normal.

May 6, 2020 09:09PM Beesie wrote:

Idowns, think of radiation and hormone therapy not so much as a treatment for your current diagnosis of DCIS, but more so as a means of avoiding a recurrence, which could turn out to be a much more serious cancer. 50% of DCIS recurrences are not found until they have already developed into invasive cancer. While most of these invasive cancers are early stage, some are not. That's not to scare you (or anyone) but just a statement of fact. I've been here long enough to know a number of women who started with DCIS and ended up with an invasive recurrence and subsequently a metastatic recurrence.

That doesn't mean that rads or hormone therapy are necessary for everyone with DCIS. All DCIS is not alike. Some women have a small (3mm, for example) single focus of low or intermediate grade DCIS. Others have large multi-focal or multi-centric grade 3 DCIS with comedonecrosis. And some come out of surgery with wide surgical margins whereas others have minimally acceptable surgical margins. Depending on these factors, the recurrence risk after a lumpectomy (with no further treatment) can range from as low as 5% to as high as 50%. Rads cuts this risk in half, and hormone therapy halves it again. With a 5% risk, that's not much absolute benefit for either treatment but with a 50% risk (or even just a 25% risk), that's a significant absolute benefit. And when you consider that half the recurrences will be invasive cancer...

A handy tool to figure out your risk is the Van Nuys Index. Back when I was diagnosed it was used a lot; it's used less these days, but I still think it's useful to look at (add the points from each category to come up with a total score):

Given the relatively high recurrences rates for some within the intermediate group (27% on average within 10 years), the treatment recommendations were refined as follows: (Note that the recurrence rate in the Mastectomy column excludes patients with those scores who had a mastectomy - the high recurrence rate is the reason that a mastectomy is recommended.)

https://www.bmj.com/content/344/bmj.e797

One additional consideration with regard to Tamoxifen is that it provides a secondary benefit, which in some cases might be greater than the primary benefit. Tamoxifen also protects both breasts against the development of a new primary breast cancer. Anyone diagnosed with breast cancer (including DCIS) one time has about double the risk of the average woman (who has never had breast cancer) to be diagnosed with breast cancer again - not a recurrence but a completely new separate cancer. This means that for someone who is 50, her risk to develop breast cancer again over the course of her lifetime is around 20%, or possibly higher if she has additional risk factors. Tamoxifen will reduce this risk for the years that you take the Tamoxifen, and the risk reduction benefit extends for another several years beyond that.

Lastly, for those questioning whether or not to have rads, the Oncotype for DCIS might be something to ask about: https://www.oncotypeiq.com/en-US/breast-cancer/patients-and-caregivers/stage-0-dcis/about-the-test

Not an easy decision, but one that should be made not based on generalities about DCIS but based on the specifics of everyone's own diagnosis, with consideration to personal risk tolerance.

Jun 9, 2020 08:31AM Kim0215 wrote:

Good morning - I'm a kindred spirit. 54, same diagnosis (wasn't tested for progesterone though, just estrogen and when I asked why not, they said they just don't do it when only calcifications are present??? I am in the Charlotte area). I'm getting the little monsters removed on 6/17 and if (WHEN) the pathology report comes back showing there were no surprises and it is truly non-invasive, I am also leaning toward monitoring. Menopause has to hit sooner or later and I'm very healthy, lots of exercise, good diet, and wine. (been lots of that lately) I'd like to ask if you'd share your latest since your surgery and what route you chose. My concern with radiation and drugs is the reduction in my quality of life and the fact that I am poisoning and putting drugs in my body. I have implants and have been told they are not the culprit but am not attached to them in the least anymore. I hope you got the best of news!

Kim

Jul 8, 2020 04:25PM QueenB44 wrote:

I went that route, now I DCIS showed up again but at high grade. Now I'm questioning my decision.

Jan 18, 2021 10:39PM PandoraX wrote:

I had a lumpectomy about year ago also - no radiation or medication. I was confident with my decision until I spoke to the nurse oncologist a half year later. When I sited the studies that show mortality outcomes are the same - no matter what the treatment, she informed me that the studies are only 10 year studies. And that after 10 years, mortality goes up for those who have had lumpectomy only. At any rate, I decided to try low dose tamox - after reading the British studies showing it could be as effective as the regular dose. I had two negative mamograms. I thought I would need them every six months - but nurse said I won't need the next one for a year. How often is your doc monitoring you?

Jan 25, 2021 07:36PM PandoraX wrote:

Got it - thanks for the info! I guess the only difference (compared to before) is that I now go to a slicker radiology lab where they give me the results the same day.

Feb 19, 2021 10:14PM Khakitag wrote:

sorry for the really late reply. I rarely get on here anymore. My Surgeon(who did not do the surgery) was a bit concerned because my margins were <1mm. Did an MRI 8 weeks after initial lumpectomy and repeated it again 6 months later. All clear on both. Now another mammo in 6 mon, then back to yearly, I think. I am also on testosterone pellets, and she wants to keep a closer eye on me.