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Topic: Lurker checking in to make sure I didn't miss anything

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Aug 26, 2020 05:44PM

Mysticmint wrote:

Hi everyone

I have been reading these threads and learning a lot. I think I understand my new DCIS diagnosis and have made some decisions, but it is very overwhelming and I want to just check in here. My doctor, although highly recommended by several people, tends to talk quickly and I believe is extremely busy. Here in the NY area people who put off medical treatment are now flooding doctors and hospitals getting their treatments done as the COVID rates have lowered. In fact, my surgeon's surgery booker just called to tell me she has one slot to do my surgery next Friday and I should take it because the ORs are fully booked throughSeptember.

Anyway, here is my story in a nutshell: 58 year old healthy woman with no family history of cancer. Dense D breasts so I get sonos with my mammos. Got a mammo/sono on 7/10 and it was suspicious. Sent for biopsy on 7/14 of 2 places in the breast. Stereotactic area on side of breast showed 5 cm of DCIS high flat grade, progesterone and estrogen negative. Other sono assisted bio of lower breast under nipple was benign. Had an MRI which showed that the DCIS area might be more widespread and that the benign area of the first biopsy could still be something so my new surgeon ordered another set of biopsies. They took a while to schedule because of the crowds of people wanting appts. Meanwhile, my surgeon works in tandem with an excellent plastic surgeon. Together they suggest the treatment of lumpectomy with bilateral breast reduction, followed by radiation. I thought, wow, I get a nice breast lift while I cut out this little, pre-cancerous area. Sounds pretty straightforward. Oh, and got genetic testing telling me I was negative for BRCA.

Then I start reading and hearing about people choosing to get mastectomies, which I never really considered because it seemed drastic. But when I heard about people in my area of Long Island, with a high incidence of breast cancer, having recurrences, I start to think of it as an option. Plus, reading that 5cm is actually a large area of DCIS, and the high grade and Estrogen/progesterone negative might be more serious in terms of recurrence...I got scared.

I went for the extra biopsies. First one is negative: meaning the area of DCIS does not seem bigger than the original estimate. When they go to do the 2nd biopsy with the sonogram they cannot locate the area and they recommend I get an MRI assisted biopsy. That is another week's wait. I just had that yesterday.

I finally spoke to surgeon last night. She says that mastectomy vs lumpectomy is up to me. She told me that survival rate from either lumpectomy or mastectomy is the same and that the recurrence rate from lumpectomy is 1% a year for a total of 10 years, meaning that 10 year recurrence is 10%. That sounded low to me, especially for Long Island. But I also know that mastectomy doesn't 100% guarantee that there will be no recurrence. She also said she does not want to rush me and I should take my time, but if I decide on mastectomy I may not be able to use the Sept 3rd date and we will have to try and schedule another date (which may mean sometime in Oct). We will make the final decision after the results of the biopsy come back--hopefully on Friday.

But today I am back to leaning towards doing the lumpectomy/reduction-lift/radiation if the last biopsy comes out negative. I figure that I would rather do the original plan that conserves my breasts, has a quicker recovery time, lets me avoid staying overnight in the hospital for now. I know I take the risk of a higher recurrence but I will be religious about getting mammos. I don't think I will be totally paranoid about each mammogram {as some people who have regretted not getting mastectomies have told me}.

I want to thank the people on this board, especially Beesie's informational DCIS post. I was going to ask why my Dr didn't test me for HER2 but now I don't have to ask since I read that post. I do worry that my Dr didn't go into detail about my high grade hormone negative characteristics when discussing options. I know she comes highly recommended and I did get another consultation from a dr I didn't like as much. I think I am just anxious. Is there anything I have missed or should have asked before going ahead? I feel rushed, and yet this has been going on since early July.

Thanks in advance.

Dx 7/14/2020, DCIS, Right, <1cm, Stage 0, Grade 3, ER-/PR- Surgery 9/4/2020 Lumpectomy: Right; Reconstruction (left); Reconstruction (right) Surgery 9/24/2020 Reconstruction (right) Surgery 10/26/2020 Reconstruction (right) Radiation Therapy 12/7/2020 Whole-breast: Breast
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Aug 26, 2020 09:18PM Beesie wrote:


As I was reading your post, the thought that entered my head was "Don't make your decisions based on what others did or what happened to someone else, make your decisions based on what's right for you." As I kept reading, I see that this is where you ended up, back with the original decision that your made.

I will add one fly to the ointment. I find your surgeon's explanation about recurrence risk after a lumpectomy to be a more precise than it should be. The simple fact is that until you have surgery, it's impossible to accurately know what your recurrence risk will be. Since you've had multiple screenings and biopsies, the surgeon should have as complete a picture as possible so hopefully the surgical pathology presents no surprises. But surprises are always possible and that could change the recurrence risk estimates. Even if the final pathology is as expected, with a large high grade DCIS, the size of the surgical margins is critical and there is no way to know that until the surgery is done.

Since you've been lurking, you may have seen some of my posts mentioning the Van Nuys Prognostic Index. There are various charts out there explaining how it works; the following chart includes a 10-year recurrence-free estimate. If you put what your currently know into this chart, it appears that your score, prior to surgery, is an 8. You get 2 points for age, 3 points for tumor size, 3 points for tumor grade. The missing piece is surgical margins. If your margins are nice and wide, 10mm or greater, then you add just one point. But if your margins are narrow, less than 1mm, then you add 3 points. So your total score could be a 9 or it could be as high as a 12. Look at the difference in recurrence risk estimates, just based on that difference in surgical margins.

To be fair, the VNPI provides pretty high level estimates that average together lots of things, which means you can't count on it being very precise. All other things being equal, if someone were to end up with 8mm margins, at the high end of a "2" score, I doubt that their 10-year recurrence risk would be the same as it would be if they had 1.5mm margins, at the low end of the "2" range. But directionally, the model is correct. Larger area of DCIS, higher grade, narrower margins - each increases recurrence risk. So for your surgeon to say 1% a year for 10 years, before knowing the margin size but knowing that the DCIS appears to be large and is high grade, and knowing that the DCIS is ER-/PR- which makes you ineligible for endocrine therapy (which cuts recurrence risk by 50%), that seems extremely optimistic. And certainly recurrence risk doesn't stop at 10 years.

I guess the question is: At what recurrence risk would you change your surgical plan? If you are okay at 10%, would you be okay at 14%? And then the next questions are: How comfortable is your surgeon that she will be able to achieve wide surgical margins, and how certain is she about the recurrence risk estimate she provided to you, given the size of the DCIS and the grade?

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 26, 2020 10:40PM Moderators wrote:

Welcome, MysticMint! We're so sorry you find yourself here, but we're glad you decided to post and share your story. Certainly not an easy decision you're faced with, but we hope the information shared here has been helpful to you so far. Please keep us posted on what you decide!

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Aug 27, 2020 06:29AM Ingerp wrote:

I just wanted to throw out there that I had a large chunk taken out of my left breast with the DCIS and never considered any plastic surgery. I have friends who've sailed through some form of BC only to have some really bad experiences with reconstructions. Anyway--yes there is a divet on the outside of my breast, but it's completely not visible when I have clothes on and I honestly don't think about it any more. I figured going into it that our breasts are always asymmetrical anyway, so why bother.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/18/2018 Taxol (paclitaxel) Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Aug 27, 2020 09:16AM Mysticmint wrote:

Thank you everyone! There is a lot to consider and a lot to keep in mind....all while going through this weird time in our world! I tend to be a private person but it definitely helped to write out my story....AND I just received a call that the biopsy from tues was negative!! I thought that might confuse me more, since if it was another affected area I might lean more toward mastectomy, but i find myself still thinking that the lympectomy and reduction /lift makes sense for me. Thank you Beesie for explaining the prognostic scoring again. I now understand that there will be new information after my surgery which affects the prediction of recurrence. Like many things in life, this is somewhat of a crapshoot, and we make the best decisions we can for ourselves and our situations.

Dx 7/14/2020, DCIS, Right, <1cm, Stage 0, Grade 3, ER-/PR- Surgery 9/4/2020 Lumpectomy: Right; Reconstruction (left); Reconstruction (right) Surgery 9/24/2020 Reconstruction (right) Surgery 10/26/2020 Reconstruction (right) Radiation Therapy 12/7/2020 Whole-breast: Breast

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