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All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: Looking for similar diagnosis

Topic: Looking for similar diagnosis

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

Posted on: May 19, 2017 02:41PM

violamama wrote:

Hello! I am new here, but have been doing a lot of reading. I was recently diagnosed with DCIS - high grade, ER-/PR-. I would like to better understand how the negative hormone receptors impacts my risk for recurrence or treatment. Does being high grade and having negative receptors make my cancer more "aggressive" or "fast growing". Has anyone had this combination of a diagnosis and did you learn anything I should keep in mind as I make those big decisions here in the next few weeks? Thank you for helping!

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May 19, 2017 03:00PM MTwoman wrote:

So sorry you've joined our club (that no one wants to be a part of ). DCIS treatment (unless there is a microinvasion found, once surgery is completed and all samples have been examined by pathology) consists of lx+rads or mx (very few get rads after mx) and then endocrine therapy for hormone receptor positive disease. I had a similar diagnosis (but intermediate grade). What my MO explained to me is that there is no evidence that Tamox will be beneficial to hormone negative disease. So your decisions will focus mainly on lx+rads vs mx. With other factors that impact personal risk (strong family history, genetic testing etc), some women consider BMX. ((hugs))

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/20/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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May 19, 2017 08:22PM Sitti wrote:

Hi violamama, sorry you have to be here but there are lots of folks that will be able to help you and encourage you. I had the same DX as you. Grade 3, er-pr-, also with comedo necrosis. I don't know if there's anything I can tell you other than what you may already know. Feel free pm me if you want.

Dx 12/5/2016, DCIS, Right, 4cm, Stage 0, Grade 3, ER-/PR- Surgery 1/12/2017 Lumpectomy Surgery 3/21/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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May 19, 2017 10:49PM MinusTwo wrote:

I too am ER/PR negative. YOu need to find out if you are HER2+. That is a game changer.

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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May 20, 2017 01:55AM - edited Aug 19, 2017 05:31AM by

yep. Same here. ER-/PR-, high grade DCIS. Had bilateral mx on 3/31 with reconstruction. No regrets. Recovery wasn't so bad. I'll be followed every 6 mos for 5 years with clinical breast exams.

Dx 3/6/2017, DCIS, Left, 1cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR- Surgery 3/30/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 20, 2017 04:10AM Sitti wrote:

Rrobin0200, what are "clinical breast exams" (with BMX)? I also had BMX and other than my BS doing a skin check in a year I have no follow up which bothers me. Did you request closer follow up or is that the protocol where you are?

Dx 12/5/2016, DCIS, Right, 4cm, Stage 0, Grade 3, ER-/PR- Surgery 1/12/2017 Lumpectomy Surgery 3/21/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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May 20, 2017 09:13AM violamama wrote:

rrobin and sitti, I'm curious if you went with a BMX for cosmetic reasons to balance yourself out or if your diagnosis somehow played a role in that decision. I am fairly certain I want a mastectomy, but am not sure about reconstruction.

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May 20, 2017 10:46AM - edited Aug 19, 2017 05:31AM by

my surgeon performs manual breast exams every 6months. It's the same as doing it yourself, but I feel better when my team does it. However, my BS did perform an ultrasound a few weeks after my surgery just as a baseline

Dx 3/6/2017, DCIS, Left, 1cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR- Surgery 3/30/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 20, 2017 10:51AM - edited Aug 19, 2017 05:31AM by

i chose a bilateral mastectomy after my dx simply because I wanted the girls gone... I didn't want to go through this again.

As for reconstruction, I wanted to feel as normal as possible and not have to relive the experience every time I looked in the mirror. I'm 37, with a husband and 2 young kids. I have my whole life ahead of me!

Dx 3/6/2017, DCIS, Left, 1cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR- Surgery 3/30/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 20, 2017 11:07AM - edited May 20, 2017 11:14AM by BarredOwl

DCIS is routinely tested for ER and PR status.

DCIS is not routinely tested for HER2 status in accordance with consensus guidelines.

Regarding current HER2 testing practices in pure DCIS, in general, the National Comprehensive Cancer Network (NCCN) guidelines for Breast Cancer (Version 2.2017) do not recommend routine assessment of HER2 status for pure DCIS:

-----"Although HER2 status is of prognostic significance in invasive cancer, its importance in DCIS has not been elucidated. To date, studies have either found unclear or weak evidence of HER2 status as a prognostic indicator in DCIS.[42-45] The NCCN Panel concluded that knowing the HER2 status of DCIS does not alter the management strategy and routinely should not be determined."-----

HER2 status need not be determined for DCIS, (a) because its prognostic significance is not clear; and (b) because it does not impact "management" (i.e., treatment plan). After surgical treatment, those determined to have pure DCIS disease (Stage 0) are never treated with HER2-targeted therapies under current clinical consensus guidelines.

In accordance with current treatment guidelines, many patients with pure DCIS do not receive HER2 testing.

(In contrast, if there is an area of invasion, then the invasive disease is routinely tested for HER2 status, because it may impact recommended treatment.)

BarredOwl

[Formatting is not working; ---- indicates indentation----]

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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May 20, 2017 11:11AM Sitti wrote:

Rrobin0200, Thanks for your reply. I'm in the process of reconstruction and my PS plans to do prepectoral implants. I'm wondering how you do a manual breast exam with the implants. Follow ups were not offered, except, as I said, for the annual skin check.

I agree, I wanted my girls gone. First opted for LX but then after LX realized the area was 4.4 cm instead of 2.5 cm I was no longer comfortable with keeping them. (I'd also done research after LX that lead me to that decision, not an easy decision and very personal) Also ended up with other stuff in there after MX - LCIS & ALH.


Dx 12/5/2016, DCIS, Right, 4cm, Stage 0, Grade 3, ER-/PR- Surgery 1/12/2017 Lumpectomy Surgery 3/21/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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May 20, 2017 12:17PM Sitti wrote:

violamama, just saw your question regarding the BMX. Cosmetics was part of the reasoning, symmetry (although the right side has been through alot so I'm not sure symmetry will be achieved🙈) . Also, my BS explained that since I had bc in the right breast, the left breast had a slightly higher risk of developing bc (independent of the right dx). I've always had very dense breast. I've dreaded the mammos because of call backs, diagnostic mammos, even had a biopsy 10 years prior to this one. . I tended to put off getting them for 2 & 3 years. I didn't want to go through this again either... these are some of my reasonings. Again, it is such an individual decision, and either choice will have pros and cons.

Dx 12/5/2016, DCIS, Right, 4cm, Stage 0, Grade 3, ER-/PR- Surgery 1/12/2017 Lumpectomy Surgery 3/21/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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May 20, 2017 01:26PM Beesie wrote:

Just want to mention, while there are good reasons why someone might choose to have a BMX, including some mentioned here, and while a BMX may significantly reduce one's recurrence risk and the risk of another primary breast cancer, a BMX does not guarantee that someone will not "go through this again".

Approximately 1% - 2% of women who have BMX, even for just DCIS, will have a localized recurrence (in the chest area). Similarly, approx. 1% - 2% of women who have a BMX will end up with a new primary breast cancer diagnosis at some later point in their lives. Even an excellent surgeon performing a BMX will not be able to remove all breast tissue (I recall reading somewhere that generally about 3% of breast tissue remains; don't know if that's true or not but it seems reasonable), and with some breast tissue remaining, there remains the possibility of a breast cancer diagnosis.

After a BMX it's important to remain vigilant and to check for lumps and changes. In my years on the board, I have sadly seen more than a few cases where women thought that they couldn't be diagnosed again after a BMX, didn't check out suspicious changes and ended up being diagnosed with a more advanced recurrence or new primary.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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May 20, 2017 02:08PM - edited May 20, 2017 05:14PM by Sitti

Bessie, yes, thanks for that clarification. That is true. That is why I asked the question regarding manual exams if BS says all done, and there is no monitoring. Don't know exactly what to do or how to check. The PS said if recurrence happens it usually is on sternum or lymph nodes but I have concern about chest wall. I welcome any imput, ideally I'd like to have a medical professional following me, just not sure how to make that happen.

On a different note, thank you for all you do to help all of us on these boards. I've read many things you've posted and have been helped. Just want to take this opportunity to say thank you.

Dx 12/5/2016, DCIS, Right, 4cm, Stage 0, Grade 3, ER-/PR- Surgery 1/12/2017 Lumpectomy Surgery 3/21/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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May 20, 2017 03:01PM - edited Aug 19, 2017 05:31AM by

this is my personal opinion, one that worked well for me and my family. Yes, it may not eradicate all chances of recurrences, but I still hope and pray that I am making the most radical approach that is available.

I have known many, many women who have had recurrences with both a lumpectomy and a double mastectomy. There is NO "right" answer here. Believe me, if and when there is a 100% cure rate, I'm quite sure most women and men for that matter, will go that route.

I understand the need for useful, accurate information. We all need to be informed. But please don't quote anyone without knowing their personal stories, their personal risk factors, and their discussions with their medical team along with their families.

Dx 3/6/2017, DCIS, Left, 1cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR- Surgery 3/30/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 20, 2017 03:03PM - edited Aug 19, 2017 05:31AM by

hence, the reason I chose bilateral mastectomy with close follow up (clinical breast exams) in the New Orleans, la area. This is coming from an expert of a BS, and I am following her recommendations.

Dx 3/6/2017, DCIS, Left, 1cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR- Surgery 3/30/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 23, 2017 05:59PM BringOn2017 wrote:

Hi violamama Sorry was away from the boards for a few days. I was diagnosed with low grade ER positive DCIS, as well as dense breasts and fibrocystic disease, and had enhancement globally on MRI. I also have a strong Family History. I opted for a bilateral MX. Lumpectomy was off the cards due to the extent of microcalc on mammo. 

From a prognostic point of view the higher grade is more aggressive and has a likelier chance of turning invasive. Also if its ER -ve, then using drugs like Tamoxifen is out. I would be taking this in mind when discussing with my BS. Choices of treatment are usually MX vs lumpectomy and rads and Tamoxifen. However you would not be able to take the Tamoxifen.

If you want my take on the surgery, yes it's doable. True I am well aware that I still have a recurrence risk. But I am very happy to have decreased my cancer risk from around 35% to 1%, and I can live with the 1% doubt. As my BS and oncoplastic surgeon have told me, my overall risk is now less than the general population. I have also avoided the need for rads, since rads are not needed after MX for DCIS. And do keep in mind that rads do not come without side effects. Also should you have a recurrence after having had rads, and then need to go on to MX and recon, you're doing recon with radiated skin, which has its own problems. Another thing I kept in mind when taking my decisions was that when a biopsy is taken it's actually a very small piece of tisse compared to the whole tumour, as well as the fact that other tumours not visible on mammogram may also coexist. Should you do opt for a lumpectomy instead of mastectomy I would try to at least get an MRI.

On the other hand if you do opt for the bilateral mastectomy, you should discuss the possibility of sentinel node biopsy. My BS had explained that should they have found any invasive element on the breast removed, and we hadn't done the sentinel, then he would have had to go in again and do a full axillary clearance, something I wanted to avoid unless absolutely necessary. 

Take care and pm me if you think I can be of any help. I had looked up the NCCN guidelines on management of DCIS when taking my decisions.


The phoenix hope, can wing her way through the desert skies, and still defying fortune's spite; revive from ashes and rise. Dx 1/23/2017, DCIS, Right, Stage 0, 0/4 nodes, ER+ Surgery 2/22/2017 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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May 23, 2017 06:49PM kira1234 wrote:

I'm so glad I bumped into this thread today. I'm just 3 weeks out from a double mastectomy. My situation is a bit different dealing with my 2nd cancer diagnosis. I chose this route for a number of reasons one being less chance of reassurances. Bessie thank you so much for your message I needed to hearut.

Dx 6/2010, ILC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/8/2010 Lumpectomy: Left; Lymph node removal: Left, Right, Sentinel Radiation Therapy 8/3/2010 Hormonal Therapy 10/5/2010 Aromasin (exemestane) Dx 2/2017, ILC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR-, HER2- Hormonal Therapy Arimidex (anastrozole) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right
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May 28, 2017 10:01PM Kkubsky wrote:

Hi. I have...no make that HAD....high grade ER- PR- DCIS with comedo necrosis. I decided to have lumpectomy with radiation. It's been almost 1 1/2 yrs since my dx and so far all is good. At first I wanted to just "cut em off"....those were my words to the breast surgeon. But after much discussion and research, I felt comfortable with lumpectomy/radiation combo. My personal recurrence risk is somewhere between 8 and 15%. I can live with that. If I am unfortunate and have another "event", I will have a mastectomy at that time.

Everyone is different and has different things that factor into their decision. Even drs don't agree on so many things regarding DCIS. I think the best thing I finally did was to trust my medical team, and stop googling everything. I was a wreck for a long time but feel at peace about my decision now.

Dx 1/28/2016, DCIS, Left, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 2/24/2016 Lumpectomy: Left Radiation Therapy 3/21/2016 Whole-breast: Breast
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Jul 31, 2017 01:24PM Linwentz wrote:

I too have been diagnosed with high grade ER-PR- DCIS with comedo necrosis. I had a lumpectomy on Friday & am waiting the pathology report. The ultrasound I had a few days before surgery picked up a lot of microcalcifications, so I am thinking there might be another biopsy/lumpectomy in store for me. Kkubsky, I am encouraged by your recovery, good health and positive attitude

Dx 7/12/2017, DCIS, Left, 4cm, Stage 0, Grade 3, ER-/PR- Surgery 7/28/2017 Lumpectomy: Left Surgery 9/12/2017 Lumpectomy: Left Surgery 9/22/2017 Lumpectomy: Left Radiation Therapy 10/23/2017 Whole-breast: Breast

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