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 01:54PM

Posted on: Jun 13, 2013 01:54PM

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 5/15/2013 Lumpectomy: Right Surgery 7/10/2013 Lumpectomy: Right Radiation Therapy 8/28/2013 Breast Dx 9/23/2020, IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 11/7/2020 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 1/5/2021 CMF
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Jan 18, 2014 01:45AM - edited Jan 18, 2014 01:59AM by Hindsfeet

If I were to do it all over again the last choice would be mastectomy. I had no idea how uncomfortable, unnatural, and painful it is...at least for me. I wish I had read more of the reconstructive bco threads. My reconstructive implant is like wearing a iron bra. It is like wearing a too small/tight bra that you want to rip off but you can't. Every time I drive, stir food, or use the right side of my body my implant contracts. I feel it against my ribs. It constantly reminds me that I had cancer. No fun. Oh, plus once a year I have to have a mri to make sure the implant is ok...and see my oncologist a few times a year.

My P.S. recommends that I again go through surgery to replace it  and put a gummy-bear on top of my pec muscle do to contractures and that scar tissue is forming around it hardening the implant. If I go through with it this will be my 5th reconstruction surgery!  If I could chose again I would had again gotten a lumpectomy with radiation.

With that said there are those who are ok with it. It is better than dying from cancer. For a low grade cancer I know I wouldn't do it. I am so happy that I kept my left breast. Nothing like the feel of the real you.

It's a tough decision and I feel for you.

Want to add here is Beese was a huge encouragement and help to me when going through my cancer journey and has been on this board a long time dedicated a balance voice to those caught between a hard place and a rock. She has given a lot of time and by no means intends to hurt anyone. In the beginning of my cancer journey I was one annoying know it all. :)

Dx 6/13/2014, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Jan 18, 2014 11:25AM beesie.is.out-of-office wrote:

Hindsfeet, thank you!

The two most recent posts in this thread show just how different the experience of a MX and reconstruction can be for two different people.  And that's the most important take away from this discussion.  

Don't make your decision based on what happened to someone else because there is no way to know what will happen to you.  

Don't decide to have a MX or BMX because someone else says that they found it to be an easy surgery and recovery and are happy with their results.  

Don't decide to not have a MX or BMX because someone else says that they found it to be a difficult surgery and recovery and are unhappy with their results.

Make the decision knowing that you could land in either camp. 

You might have a really easy time with it and be over and done within 6 months and live happily ever after with painless and pretty fake breasts.  

Or you might have a difficult time with it and 2 years later you are still having revision surgeries and you find that living with reconstruction is difficult and uncomfortable. 

Make the decision based on what's right for you to treat your current condition and with consideration to what might happen in the future and how you will feel in the future. 

And understand too that a MX or BMX and reconstruction is not just about the surgery and the reconstruction process.  Too often on this board we talk about a MX/BMX and reconstruction from the standpoint of the surgery and the time/difficulty involved with the reconstruction process, or from the standpoint of appearance.  But the surgery and reconstruction process is temporary.  And the appearance is something that you eventually adjust to, whether your reconstructed breasts meet your expectations or not (more often it's 'not', since too many women go into reconstruction with unrealistic expectations, thinking that they will get perfect perky replicas of their original breasts).  

What a MX/BMX and reconstruction is really all about is living without your natural breasts and living with reconstructed breasts for the rest of your life. 

Someone who had an easy time with the surgery and reconstruction might find over the next years that either physically or emotionally or even from a relationship standpoint (the sexual implications of a MX/BMX and reconstruction) they have great difficulty living with a MX/BMX and reconstruction.

Someone else who had a difficult surgery and lengthy reconstruction process might find that once that is all over and done with, they are relieved to be living with a MX/BMX and reconstruction.

The best anyone can do is to really think it through, really try to understand what's involved and what all the possible short-term and long-term outcomes might be, really look into themselves, and then make whatever decision is right for them.  Then don't look back and don't second guess.

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Jan 19, 2014 01:25PM bluewillowskys wrote:

I had calcifications that turned out to be grade 2 DCIS. At the time I chose lumpectomy and rads as I was terrified of losing a breast at 42. I have not tolerated Tamoxifen so went off it a year ago. Now im scared I will have a recurrence so im considering a BMX with DIEP. After a MX do you still have to have mammos? can you still get BC?

Yippy Skippy ! Dx 4/7/2011, DCIS, Right, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Radiation Therapy 6/1/2011 Breast Hormonal Therapy 8/1/2011
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Jan 19, 2014 01:50PM melissadallas wrote:

Bluewillow, you can still get a local recurrence after a mastectomy because there are still very small remnants of breast tissue remaining. The odds are low but it happens. What is your recurrence rate without the Tamoxifen?

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor. Dx 5/20/2012, LCIS, Stage 0, 0/0 nodes
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Jan 21, 2014 05:27PM bluewillowskys wrote:

I used an online tool that someone suggested and it said 10-16% ...if its accurate. Iknow that doesnt seem like a lot, but there is a family history of other cancers as well(i was the first with BC). My mom is now having a recurrence of thyroid cancer (DX 2012,had surgery and rads). 

Yippy Skippy ! Dx 4/7/2011, DCIS, Right, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Radiation Therapy 6/1/2011 Breast Hormonal Therapy 8/1/2011
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Jan 21, 2014 05:30PM bluewillowskys wrote:

Forgot to mention that 21 yrs ago when nursing my daughter I had mastitis. When my BC was first found they thought what they were seeing could have to do with that. But the biopsy confirmed DCIS,

Yippy Skippy ! Dx 4/7/2011, DCIS, Right, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Radiation Therapy 6/1/2011 Breast Hormonal Therapy 8/1/2011
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Jan 21, 2014 10:25PM ballet12 wrote:

Hi Bluewillow, it's funny that you mention mastitis.  It was 20 years ago, when I was nursing my daughter that I developed mastitis in the same breast that eventually developed DCIS.  Over the past 18 years, I have had multiple biopsies (all surgical) of that breast exclusively, until recently dx with the DCIS (previously had ADH/ALH).  It is only since the DCIS diagnosis that I had a biopsy of the other breast (totally benign) and that was probably because there is so much surveillance post diagnosis.  I wonder if the inflammation caused by the mastitis set the stage for the eventual development of the DCIS.  I was diagnosed with the ADH/ALH when my daughter was two years old, so there was a relatively short time frame from the mastitis to that high risk diagnosis.

Surgery 7/27/2012 Lumpectomy: Right Dx 8/2012, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR- Surgery 10/5/2012 Lumpectomy: Right Surgery 10/26/2012 Lumpectomy: Right Radiation Therapy 1/11/2013
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Jan 22, 2014 12:36AM bluewillowskys wrote:

i remember having high fever, lethargic, pain and reddened breast on my right side...thats my cancer side. I am not familiar with the ADH/ALH terms...what are they?

Yippy Skippy ! Dx 4/7/2011, DCIS, Right, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Radiation Therapy 6/1/2011 Breast Hormonal Therapy 8/1/2011
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Jan 22, 2014 09:25AM ballet12 wrote:

Hi Bluewillows, ADH is atypical ductal hyperplasia, and ALH is atypical lobular hyperplasia.  These are benign conditions found on pathology, which increase the risk of the development of breast cancer.  They are abnormal changes in the breast ducts and lobules.  The ADH is found when microcalcs are seen on mammography (in the same way that DCIS is).  For my recent DCIS diagnosis, on the initial core biopsy they found ADH, but the DCIS was found after the surgical excisional biopsy (lumpectomy #1).  As I said, I'd had the ADH/ALH diagnosis many years ago, as well. Many people have these pathological changes and never know it.  There are threads here on bco.org devoted to ADH and follow-up.

Surgery 7/27/2012 Lumpectomy: Right Dx 8/2012, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR- Surgery 10/5/2012 Lumpectomy: Right Surgery 10/26/2012 Lumpectomy: Right Radiation Therapy 1/11/2013
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Jan 25, 2014 12:36AM jojomg wrote:

I had a 1 centimeter tumor in my left breast and decided to have deip flap surgery and when they did the masectomy they found 2 lymph nodes. breast lymph nodes not armpit ones which is better I guess...but if I had done the lumpectomy they never would have seen it. I'm happy I had the masectomy I don't want to worry all the time

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