Topic: lumpectomy vs mastectomy - why did you choose your route?

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

Posted on: Jun 13, 2013 11:54AM

Posted on: Jun 13, 2013 11:54AM

ealga wrote:

Hi all, 

i was wondering if anyone could elaborate on this question. i have multifocal, grade 3 DCIS, and am contemplating another lumpectomy vs a mastectomy. my surgeon is confident she can clear the margins with another lumpectomy, and recommends radiation afterward.  BUT anecdotally, so many women I’ve talked to, even with a Grade 1 single foci lesion, opted for mastectomy.   I don’t want to undertreat OR overtreat but I am struggling to figure out why women would make this choice and what am I missing?  I'm at a very cutting edge cancer hospital if that matters.  I'd love any perspective on this.  Many thanks in advance. 

Dx 4/4/2013, DCIS, 5cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR-, HER2- Surgery 5/14/2013 Lumpectomy: Right Surgery 7/9/2013 Lumpectomy: Right Radiation Therapy 8/27/2013 Breast Dx 9/23/2020, IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 11/6/2020 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Chemotherapy 1/4/2021 CMF
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Jan 25, 2014 08:16AM KLJ wrote:

So are you saying they did not test the Sentinel Node?

You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you. Dx 12/12/2013, DCIS, ER+/PR+ Dx 12/12/2013, IDC, <1cm, Grade 1, ER+/PR+, HER2- Surgery 3/17/2014 Mastectomy: Left; Prophylactic mastectomy: Right Surgery 3/17/2014 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/19/2014 Femara (letrozole) Surgery 9/2/2014 Reconstruction (left); Reconstruction (right)
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Jan 25, 2014 08:30AM beesie.is.out-of-office wrote:

jojomg,  I just looked back at your earlier posts and since this discussion is taking place in the DCIS forum, I want to clarify that your initial diagnosis from your biopsy was invasive cancer, not DCIS.   Some of the DCIS women who are reading here might be concerned about the possibility of breast lymph node involvement but with pure DCIS, that's not a possibility.  Pure DCIS is completely confined to the milk ducts and cannot enter the nodes, either the lymph nodes that are found in the breast, or the nodes under the arm.

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Jan 27, 2014 08:53AM CrispyKritta wrote:

At age 45, the diagnosis was DCIS (10/2012 - reddish nipple discharge).  I initially had a lumpectomy.  Docs thought that would be it and I'd be done.  Turned out my margins were not clear and the disease was larger than anticipated (10+ cm).  It made no sense for another lumpectomy.  Since we knew one breast was coming off, after much deliberation/praying/research, I decided to go with double mast.  I didn't want to have to worry about this down the road in the other breast.  Another whammy -- 2 lymph nodes were positive (something else that was unexpected by my doctors).  I understood chemotherapy was in order but dug my heels in against radiation (what's left to radiate?!).  Docs finally convinced me to do RT because test results showed the disease was very close to chest wall.  Now I'm taking Arimadex  It was a long haul in 2013 but I've done everything recommended to prevent recurrence.  Lord willing.

Dx 10/8/2012, DCIS, 6cm+, Stage II, 2/17 nodes, ER+, HER2-
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Jan 28, 2014 01:37PM Lilysdaughter wrote:

I had a double mastectomy in September, I had no choice since I had it in both breasts and not a good candidate for tamoxifen. I have the same discomforts and real pain as Hindsfeet describes and it seems to be getting not better at all. My breastbone hurts and I feel like a thight belt is put right under my breasts. At night I have to sleep sitting up (since September ) if I try to lay a little bit flatter I wake up in pain.  I don't dare to complain because I know I had 4 surgeries in 7 months and I need to be patient but I am scared that it will be like this for the rest of my life. I really am in pain every day.

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Jan 28, 2014 04:20PM bluewillowskys wrote:

Lilysdaughter: Have you tried going to a specific pain management doctor or physical therapy? When I was having terrible joint pain while on Tamoxifen I went to Advanced Pain Management and they prescribed a pain ointment for my knees and back. I also did PT when I was having pain in my arm/chest after having radiation.

Yippy Skippy ! Dx 4/7/2011, DCIS, Right, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Radiation Therapy 5/31/2011 Breast Hormonal Therapy 7/31/2011
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Jan 28, 2014 05:32PM Lilysdaughter wrote:

hi bluewillowskys thank you for getting back to me. I did not try that yet according to my surgeon a lot of the pain is caused because I have no fat at all on my upperbody, just my ribs and skin,she would have preferred that the plastic surgeon would have implanted some of the grafting but he did not agree. I will definitely research this thank you.

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Jan 28, 2014 06:25PM bluewillowskys wrote:

I posted elsewhere about what my BS told me about fat grafting today...she said its possible that cancer can be FED by getting fat grafts possibly so she suggested I not do that because im ER/PR positive. While searching for info on it i found a VERY interesting article about DCIS and mammograms.

http://mammogramsanddcis.blogspot.com/

This is definitely worth a read for every woman. I plan on getting an MRI now and not just a mammogram.

Yippy Skippy ! Dx 4/7/2011, DCIS, Right, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Radiation Therapy 5/31/2011 Breast Hormonal Therapy 7/31/2011
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Jan 28, 2014 07:06PM Lilysdaughter wrote:

Bluewillowskys thanks for sharing interesting article, just looked at your profile I have 3 kids too, I am ER/PR + too,in my case with double mastectomy you don't have mammograms anymore I see my breast surgeon every 3 months ( lifelong) and MRI once a year. I had a mammogram in May and they found calcifications in left breast, a follow up ultra sound did not reveal anything,the biopsy was DCIS and I had lumpectomy Just to be sure my surgeon wanted an MRI this revealed a perfect mirror image after biopsy was found a more aggressive DCIS on the right side that was June I had another lumpectomy as I still thought mastectomy was kind of drastic for DCIS  In September when I had the double mastectomy they found more DCIS in the removed tissue.  I am nervous because I am not on tamoxifen.

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Jan 28, 2014 08:10PM - edited Jan 28, 2014 08:10PM by beesie.is.out-of-office

bluewillowskys, the link you provided is a blog, not an article or a research study; in other words, it's just the personal opinion and anecdotal experience of one patient.  And that particular blog has a lot of misinformation in it.  It's not a reliable source at all.

The writer says: "Most of us don’t realize that mammograms read only through soft tissue, which comprises the milk ducts; it does not see into them."  Well then how does the mammogram show the calcifications that are in the duct?

Would an MRI have detected her breast cancer sooner?  Maybe or maybe not.  MRIs appear to be better at 'seeing' high grade, comedo-type DCIS (the most aggressive DCIs) but they aren't particularly accurate in spotting less aggressive DCIS.  Personally I think it's a good idea for anyone diagnosed with DCIS to have an MRI prior to surgery, to help the surgeon get as complete a picture as possible prior to operating. And certainly MRIs have proved to be valuable for women who have dense breast tissue.  But mammograms have a role to play too, since they are the most effective at spotting the calcifications which can be a sign of DCIS. 

In my case, an MRI was able to 'see' more of my aggressive DCIS than what was seen on the mammogram.  And from having spent a lot of time on this board, I know of many other cases where MRIs have proven to be invaluable in providing a diagnosis that was missed by other screening methods.  But I can think of at least as many situations - and probably many more - where MRIs have resulted in false positives, leading to unnecessary biopsies and unnecessary worry.  So while it's certainly true that mammograms leave a lot to be desired, from my standpoint, so do MRIs.

Unfortunately at this point in time, there is no effective and fully accurate screening methodology for breast cancer (DCIS or invasive).

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Jan 28, 2014 09:31PM bluewillowskys wrote:

no, nothing can be 100% fool proof but the fact that I should consider having an MRI never crossed my mind until I read this...i certainly think the option should have been offered to me and covered by insurance if I chose to do it.

Yippy Skippy ! Dx 4/7/2011, DCIS, Right, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Radiation Therapy 5/31/2011 Breast Hormonal Therapy 7/31/2011

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