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Topic: Postop mastectomy

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

Posted on: Oct 24, 2020 09:51AM

Lozz_ wrote:

Hi all

I’m 57, and it’s my first post here,I’m happy to find you all. Hopefully I am posting in the correct forum. My journey started two months ago with bloody nipple discharge then I found a lump and off I went on the diagnosis process. Mammogram had been fine a year earlier but this time 40mm area Fibroglandular tissue, US 0.7mm suspicious and they did x6 biopsies all showing low grade DCIS. Met with BS and considered lumpectomy and radiotherapy but she ordered MRI which showed possible 8cm area but again no definite mass. With this news we proceeded to mastectomy and SNB with flat closure and I am now four weeks postop.

Final pathology showed the low grade DCIS but also 1mm of invasive ductal cancer grade 2, ER/PR positive, her negative. Still puts me at pT1a, sentinel node clear with >2cm clear margins. I didn’t think low grade DCIS was meant to turn invasive like this? There was no necrosis or calcification found. I’m still considering myself pretty darn lucky to have got it early stage but alarm bells ringing in my head with news of the invasive component.

All the algorithms says I have a minimal risk of further problems, with Predict saying I have only 0.5% benefit from going on AI. We are considering it though for peace of mind and I have a DEXA scan booked next week. I just feel I should be doing something to prevent recurrence and I am not scared of the pills so willing to give them a try. I also want the other boob off and just go flat, really pleased with the BS She has given me a beautiful flat closure and after reading some of the stories about dog ears on here I am thanking my lucky stars. She is happy to do other side once I am fully recovered from this.

I guess in my long winded way do you think I am throwing more than I need to at this and have you seen low grade DCIS turn invasive like this?

Thank you

Dx 9/25/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 9/25/2020 Lymph node removal: Sentinel; Mastectomy: Right
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Oct 24, 2020 10:21AM LivinLife wrote:

Hi Lozz! You may want to go into settings and make your diagnosis and surgery info. public so it will show in the footer of each of your posts going forward. It will help others respond, esp. if the thread grows. It sounds like you already had mastectomy.... I'm glad you are pleased with what your BS was able to do. As far as the AI goes and whether or not to take such a med - what percent positive were you? I had, initially approximately 2.8x1.8x...? cm of DCIS Grade 3 comedo-necrosis that ultimately changed after surgery to 1.2 cm DCIS Grade 3 expansive comedo necrosis micropapillary and cribiform type with a host of other benign and precancerous stuff in a larger area. I had a BMX with SNB Aug.31. My ER was only 2% so basically negative so I was not open to an AI. I figured all the toxicity and likely no benefit, esp. with a BMX and no node involvement. Just sharing my experience. Talk with your BS and ultimately your MO. % Er is important to factor in.... BTW I'm going flat as well. There are many of us who are quite happy doing so... check out some of the other threads, breastfree.org, etc.

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Oct 24, 2020 10:29AM bcincolorado wrote:

Sorry you are going through this. I had DCIS that turned invasive and because I had dense tissues my final pathology was that it was actually 5 cm large it had grown. NOTHING could be felt because of my dense tissues.

I did 10 years of meds (first tamoxifen and then letrozole aka Femara).

There is a chart on the main site about side effects of the hormonal meds if you are concerned at all.

My attitude was always it was better than getting cancer!!!

Dx 8/2009, IDC, Left, 5cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 1/7/2010 Lumpectomy: Left; Lymph node removal: Left Hormonal Therapy 1/15/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/30/2016 Femara (letrozole)
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Oct 24, 2020 11:38AM - edited Oct 24, 2020 11:39AM by Lozz_

Thank you for your welcomes LivinLife and bcincolorado :) and for sharing your experiences.

I do not have oestrogen %, path report says 3+ and BS surgeon said strongly positive. I also do not have a total area of the DCIS, they have said it was scattered with largest 18mm including the 1mm invasive but no mass was located. Pretty weird considering I could feel what I thought was a decent sized lump. I also do not see an oncologist, BS deals with me because it is so low grade. They did have a multidisciplinary meeting where all cases are discussed, I guess they have too many to see and need to prioritise. Their advice was no chemo or radiotherapy needed but we could consider HT.

I agree with you bc, definitely better than getting cancer and I think HT worth a trial.

Thanks

Dx 9/25/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 9/25/2020 Lymph node removal: Sentinel; Mastectomy: Right
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Oct 24, 2020 12:18PM MinusTwo wrote:

IDC overrules DCIS, so you will be treated for that cancer - not the DCIS. With IDC, I believe you should see an MO - medical oncologist. In fact, I wouldn't consider any medication - even the Als you're talking about w/o out an MO directing. Once the cancer is in your system, your surgeon should no longer be "driving the bus".

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 24, 2020 12:23PM Beesie wrote:

Microinvasions are more commonly found with grade 3 DCIS (as I had) but yes, I've seen other people come through here who've had a microinvasion with grade 1 DCIS.

As for the AI, there are three risk reduction benefits you will get:

First is an approx. 50% reduction in the risk of local recurrence. After a MX, your risk of local (in the breast area) recurrence is 1%-2%, so at most, taking an AI provides a 1% benefit.

Second is an approx. 35% reduction in the risk of a metastatic recurrence. With only a microinvasion, your risk of mets is about 1% - at least that's what my oncologist told me when I had a microinvasion. So that's less than a 0.5% benefit (basically what PREDICT told you).

Third is an approx. 50% reduction in the risk of developing a new primary breast cancer in your remaining natural breast. Having had breast cancer once, your risk to be diagnosed again is higher than the average woman. And you are soon to be entering the highest breast cancer risk years for all women - we are all highest risk to develop breast cancer between the ages of 60 to about 75. So the risk reduction benefit here, if you take an AI for 5 years (the benefit will extend for a number of years beyond that) is probably in the range of 3%-4%, or possibly higher, if your risk is higher based on personal risk factors.

What my MO explained to me is that for the DCIS-Mi itself, the benefit vs. risk equation for endocrine therapy (either Tamoxifen or an AI) doesn't work out in favor of endocrine therapy, simply because the risk after a MX and with only a microinvasion is already so low. But there can be significant benefit to endocrine therapy as protection of the remaining breast. But if you go ahead and have the other breast removed prophylactically, then you face a situation where the serious and qualiy-of-life risks from the AI may actually outweigh the small risk reduction benefit you would get from the AI. Now of course all this is based on my personal experiences and discussions with my MO, as well as what I've seen in posts from others here who've had a DCIS-Mi diagnosis. If you have not done so, you should have this benefit vs. risk discussion with your doctor.

And I agree with MinusTwo, with the microinvasion, and for a discussion about endocrine therapy, you should be seeing an MO.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Dec 28, 2020 06:22PM Lozz_ wrote:

My apologies for not being back sooner to thank you for your responses. Dealing with small area of tissue necrosis which has finally healed and a seroma but think I’m on top of them now at the 3 month postop mark.

Bessie thank you for spelling out the recurrence risks forthe three areas of local, metastatic and remaining breast. I know I am lucky and they are all pretty low but I guess my possibly unfounded fear that it could come back is driving me to continue the anastrozole for now. I’ve been taking it two months and I’m not noticing many side effects so will continue with the proviso I can stop if I do get into bother. Prophylactic mastectomy on the other side is planned in a couple of months which will lower my risk even further. It’s the flat and fabulous life for me!

Thanks again

Dx 9/25/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 9/25/2020 Lymph node removal: Sentinel; Mastectomy: Right
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Dec 28, 2020 11:59PM LivinLife wrote:

Thanks for checking back in! Glad you are finally healing and mending better. Please let us know either just before or at some point after surgery so we know how you're doing. Sounds like you are quite comfortable with all your decisions related to surgeries. That is soooo important!

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right

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