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 12:54PM

Posted on: Jun 13, 2013 12:54PM

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 5/14/2013 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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Aug 15, 2013 08:34PM harpercr wrote:

Hi Mepic,

My oncologist referred me to a surgeon to discuss my options after being diagnosed with midgrade dcis. The surgeon is adamant that I should have lumpectomy and radiation since, in his words, "You don't have cancer or even pre-cancer"! I told him I wanted a double mastectomy with reconstruction.  Like you, I am not concerned with keeping my breast.  And, more importantly, I don't want radiation. Surgeon told me to go to plastic surgeon to see what he said.  I have now seen the plastic surgeon, who said he's willing to do what I wish and that he would talk with surgeon who would then call me so we could set up a date.  I have still not heard from the surgeon.  I don't feel like I'm being unreasonable or "a hysterical female". Did you face any of these problems?  Thanks, Frustrated

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Aug 27, 2013 06:50AM Starak wrote:

Interesting that "You don't have cancer or even pre-cancer" but they are not only recommending lumpectomy but also radiation.  I admit radiation was a deal breaker for me.

Freed 'em when they tried to kill me. BMX, no recon, center dog ears removed, currently living flat but still tending an extensive foob and mx bra experimental farm in the back of the closet.
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Aug 28, 2013 06:01PM Isellrejer wrote:

I had a excisional biopsy (lumpectomy really) found I had DCIS and I did not have clear margins. the choice I made after I talked with my family and my BS was to do a BMX. Ths BS said that with mine it was like taking a piece off of an iceburg but you never know what is under the water. I had very dense breasts and was already doing mammograms and sonograms every 6 months. He was going to have to go back in anyway to get clear margins.When he went to do the BMX, hehad to scrape my chest wall to get clean margins. 

I am 50 so still young with early twenty to late twenty year old children and one grandson with another grandson on the way. I did get to keep my nipples and I just had my expanders put in two weeks ago. My PS once he gets these filled to how we both like them, he will put just a bit more in then I have to wait six months before he will put the permanant implants in. 

Has it been easy? No, but I would not change my decision that I have made. By the way, my BMX was done on May 17th. I know in my heart and in my head I did the right thing for me and my family. 

Jerri, für babies galore Dx 4/3/2013, DCIS, 3cm, Stage 0, Grade 2, ER+/PR+
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Sep 15, 2013 01:47PM - edited Sep 15, 2013 01:48PM by deafitmom4

I read Bessies suggestions on what to consider when making a decision. I am 41 yrs old, and discovered a lump in my left breast just cuz I felt some soreness, like a bruise, and I knew it couldnt b from doing chest exercises. I have never done a mammogram, no do i do self exams. I got a mammogram done and ultrasound and biopsy, and sure 'nuff biopsy showed DCIS, and hormone sensitive cancer. I went thru the process of meeting with drs from radiation to PS...becuz I have small breasts (size A), and the size of my DCIS and being in different places in my right breast, and the fact that you can feel a lump, and you CANNOT feel DCIS, they all suggested a MX...I will be having surgery soon, and I am still struggling with the decision to do a single or BMX...i was tested BRCA neg and i have no family history of breast cancer. My paternal aunt may or may not have had it, noone in my family can confirm it. I have a very low risk of developing BC in my right side, but the question is...will I b playing the "what if" game for the rest of my life? I am not at peace with either decision, whether I chose a MX or BMX....I am a marathon runner, and physically active. How have any made the decision btwn MX and BMX when there is no history and low risk of recurrence? To save the healthy breast or not? I have only a day or two to make my decision......

Dx 8/8/2013, DCIS, 5cm, Stage 0, ER+/PR- Surgery 9/19/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Nipple reconstruction, Tissue expander placement Dx 9/20/2013, IDC, <1cm, Stage I, Grade 1, ER+/PR-, HER2-
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Sep 15, 2013 07:17PM ealga wrote:

Hi deafitmom, 

Sending my empathy. It is so hard making these decisions. Are you comfortable with the number of opionions you received?  

All the best...

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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Sep 15, 2013 09:29PM beesie.is.out-of-office wrote:

deafitmom4,

I don't see why you only have a day or two to make the decision.  You know that you need to have the MX, so that decision is made for you.  The decision on what you do with your other breast can be made now, or it can be made in a year or in 3 years or 10 years.

If you choose to do nothing now with your 'healthy' breast, then all the options remain open to you for any time in the future. However once you have a MX, there is no going back.  So if you are uncertain about what to do, I believe the better choice is to leave open all your options.  A MX - and particularly a prophylactic MX - is too big a decision to make if you are uncertain. Many women have made the decision to remove their remaining breast a year or 2 after having a single MX.  And many other women have been glad, a year or 2 later, that they made the decision to have a single MX and kept their healthy breast.  

There really should be no reason why you have to make a decision about your healthy breast now. 

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Sep 15, 2013 10:07PM Ariom wrote:

I agree with Beesie, it is far too big a decision to make in a hurry.

You will find so many different stories here on whether to keep the healthy breast or not.

I am a UNI, and have no regrets about keeping my other breast. I had lots of people telling me I should lose the other for symmetry, but I just didn't feel I needed to, and am so glad I didn't bend under  that well meaning, pressure.

I have just been for my first follow up and Mammogram, and although it will probably always be a stressful thing to do, noone wants to hear that Dx again, it was fine.

I wish you all the best with your decision!

Dx Mondors Disease (cording) after Umx and "Dog Ear" removed 14 months post UMx .................. The Dx shuffles you like a deck of cards and then deals you a new hand! Dx 11/2012, DCIS, 1cm, Stage 0, Grade 3, 0/1 nodes Surgery 12/18/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right
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Sep 16, 2013 04:33AM Starmusic wrote:

Beesie, thanks for a great tool for us who have to think about lumpectomy or UMX or BMX!!!!
Deafitmom, for me making the decision was the hardest. I did not want MX, but once decided was at peace.....This was my situation:
DCIS, stage 0
lumpectomy + radiation was the plan BUT after LX
No clear margins and the specimen was not oriented (is this really sloppy, or what??????)so there was no way of knowing where to do another LX. (After that 1st surgery, got a 2nd opinion and new surgeon.)
For stage 0, MX seemed way too invasive to me. I have totally changed my diet, talked with macrobiotic 2- time cancer survivor. But that could not promise a cure.....So, I opted for least invasive with still nearly 100% BC clear. One week ago, UMX, no reconstruction. I heard about so many problems with reconstruction, especially from athletes. I am not an athlete, but play violin so I did not want any problems with muscles! Happy flat , one side, my dear husband also VERY happy BC is gone. I met a woman with BMX and rconstruction done by the same surgeons I was scheduled with ( lucky coincidence!) She was very happy 3 years out. She looked really good. But I just really did not like the idea of something fake in my body and all the extra surgery. I guess each one if us has to make a decision we can live with! BTW, there was NO DCIS in the breast they took out......and they didn't know until they took it out....I hope that changes soon, a way to see DCIS during surgery. Sorry to digress from original topic.....Best wishes to all of you and thank you so much!!! All your comments, research, pains and joys have been so helpful in learning how to deal with this. I am so glad I found this discussion!!!!!

Dx 4/3/2013, DCIS, <1cm, Stage 0, Grade 2, 0/4 nodes, ER+/PR-, HER2- Surgery 5/12/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 9/8/2013 Mastectomy: Left
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Sep 16, 2013 07:38AM - edited Sep 16, 2013 07:40AM by ballet12

Hi Starmusic,  I had the same situation with the first lumpectomy.  There were no clean margins and the pathology was also not oriented.  I went to a second surgeon at a major cancer center.  She did a second lumpectomy and looked (physically looked) for where the previous surgery had been done.  It's a tricky process.  After that surgery, there was still one close margin.  She told me that if I chose mx at that point, they might find no DCIS in the pathology.  I decided to go for one more lumpectomy with wide margins.  It was done and everything was clean, but radiation was, let's just say, strongly recommended (grade 3, necrosis, etc.)  Probably if I'd gone to the second surgeon from the get go, I would have had success after two surgeries rather than three. She might not have succeeded after one, since there was way more DCIS than was visible on mammo, and my stereotx biopsy had only shown ADH, so they weren't even going for clean margins.  It was really a large excisional biopsy.  Anyway, glad your situation worked out.  I still have the anxiety about the hormonals, and haven't committed.  Hopefully, you don't need to worry about that!!!

I just noticed from your signature line that you had a sentinal node biopsy with the lx.  That's something.  A snb but no marked margins (crazy).  What was their reasoning for doing the snb with a lumpectomy?

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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Sep 16, 2013 07:55AM lgkgde13 wrote:

I agree with Beesie as well. If you are uncertain about the other breast and not comfortable with it then don't do it.  I had a uni end of July, BRCA negative result helped me in my decision to uni mx.  I am 39 yrs old.  I asked my BS is she felt I was making the right decision about only doing one and she agreed it was a good decision.  She is very upfront with me and said listen, you are young, you just got married it is tough enough to lose one let alone two.  She said if I wanted to do the other one at a later time I could.  I am happy with my decision.  It is a bit of a pain to be lopsided right now while I am getting my fills with TE but amazing products out there to help with that until ready for implant.  On the upside, I can sleep on my right side sometimes :)

I hope you find peace with your decision and don't feel pressured to do both if you aren't feeling it.

Dx 6/12/2013, ILC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 7/28/2013 Lymph node removal: Left; Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 9/30/2013 AC Hormonal Therapy 12/28/2013 Surgery 1/19/2014 Reconstruction (left)

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