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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Nov 19, 2013 03:49PM gtgirl wrote:

It's a personal decision, as many have stated. I am having a MX tomorrow.

Surgery 10/15/2013 Lumpectomy: Left; Mastectomy Dx 10/23/2013, DCIS, Left, <1cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR- Surgery 11/19/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left
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Nov 19, 2013 04:13PM Ariom wrote:

gtgirl! Big hugs to you, and I wish you a speedy uneventful recovery!

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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Nov 19, 2013 04:20PM momand2kids wrote:

Maryanne

I had my lumpectomy at MGH in 2008. I agree that if you are on the fence, maybe have the lumpectomy and see what the pathology tells you. My surgeon told me up front that based on my MRI, mammogram and biopsy that there was no medical need for a mastectomy but she would do it if I wanted her to. I declined.... I just knew at that moment that it was the wrong decision for me. And if my pathology had come back different, I would have a chance to have further surgery. Turns out to have been the right thing for me. My oncotype was in the gray area, so I chose chemo--which I would have done no matter the surgery--so I am still glad I chose the lumpectomy. It is so personal---and I remember all too well how much I wanted to just get it out of me--I think I would have done anything---- but I appreciated the surgeon's measured approach.

Good luck-- it is a good cancer center--they know what they are doing. I had surgery there and treatment at Dana Farber.

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/24/2008 Lumpectomy; Lumpectomy (Right) Chemotherapy 1/15/2009 Adriamycin (doxorubicin) Radiation Therapy 3/22/2009 Breast Hormonal Therapy 6/14/2009 Femara (letrozole)
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Nov 19, 2013 06:26PM gtgirl wrote:

Thanks Ariom!

Surgery 10/15/2013 Lumpectomy: Left; Mastectomy Dx 10/23/2013, DCIS, Left, <1cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR- Surgery 11/19/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left
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Nov 27, 2013 11:08PM cat24 wrote:

Thought I would throw in my two cents worth. I had a right mastectomy with tram flap reconstruction in January 2012 after a diagnosis of high grade, multi-centric, multi-focal DCIS. Due to the extensive DCIS, lumpectomy was not recommended and I didn't want radiation anyways. My left breast was clear and the topic of a BMX was never brought up, no real reason to. Well, September 2012, DCIS was found in my once clear left breast. This time I could have had a lumpectomy, but I didn't even consider it. If something popped up in such a short time, I had no confidence that it wouldn't happen again, so I had another mastectomy, this time with lat flap reconstruction. I have never regretted either decision.

And call it an angel, call it a muse And call it karma that you've got comin' to you What's the difference? What's in a name? What matters most is never ever losin' faith 'Cause it's gonna be alright, you're not alone tonight Dx 12/2/2011, DCIS, 6cm+, Stage 0, Grade 3, 0/4 nodes, ER+/PR+ Surgery 1/2/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right; Reconstruction (right): Free TRAM flap Hormonal Therapy 1/19/2012 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 10/10/2012, DCIS, Stage 0 Surgery 11/14/2012 Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement Surgery 3/11/2013 Reconstruction (left) Surgery 7/1/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Jan 1, 2014 05:07PM Lilysdaughter wrote:

I have been reading and getting a lot of information from this site but was never ready to contact you guys.

I lost my mom and all her nieces and my great grandmother to breast cancer. They were all in their 40 ies. Last May I went for a mammo and they saw something suspicious. To make a long story short this was may 7 th my gp wanted me to have an ultrasound ASAP the imagine center wanted to see my previous mammograms believe it or not the place I used to go was out of business it took me 4 weeks to locate the place were they dumped all my records. After the ultrasound I was advised to see a breast surgeon again they did not want to give me an urgent appointment without previous records ( I still did not have them in my hand) it took my GP calling a breast surgeon and pressuring that he really expected cancer to see me end June. This took almost 2 months.

From then on I had a surgical biopsy this revealed DCIS which was told to me as having pre cancer. My husband and I had to go in same day to talk about my treatment. We were both shocked to hear the further treatment of radiation and tamoxifen if it was "pre cancer" 

The initial consultation with the radiation specialist cleared this up according to him there was no pre cancer this was cancer. My surgeon had in the meantime scheduled me for an MRI this one revealed more suspicious calcification after lumpectomy it revealed more aggressive DCIS. 

At this stage I panicked did not know what to do anymore and cancelled my radiation. I called my surgeon went to see her and asked her opinion she mentioned carefully the braca test and mastectomy because I have a relative that battled breast cancer but ended up dying from a blood cloth from tamoxifen so tamoxifen was not an option since I had blood cloth problems.

I froze went back to my GP and begged him to help me sort this out. He send me for a second opinion ( after having to hear from a lot of people that I probably was misdiagnosed. That I was fine,...) the oncologist assured me I was not wrong diagnosed that this was serious since I had the family history and both breasts but that a lumpectomy or mastectomy had the same survival rate.

So again I did not know what to do. I went to my sons soccer game and ended up talking to a mammogram technician and what she told me did it for me. Survival might be the same but since I make it so easily I would have to deal regularly with the biopsies and the medical costs. My surgeon was happy because she was convinced mastectomy was the way to go for me.

I decided to have a mastectomy in September with expanders it is hard but I got proof that for me it was right they found more DCIS in the removed tissue.

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Jan 3, 2014 12:39PM Newome wrote:

I have been reading these posts, which are very helpful, but I am still very confused.  In October, I discovered bleeding from my nipple, went to my GP, then had a mammogram and diagnostic mammogram which discovered a ductal papilloma and was referred to a breast surgeon.  I had the papilloma removed December 13 and the test results revealed cancer cells.  The diagnosis was DCIS, stage 0.  I keep reading here about ER +/- and HER2 +/-, but I have no idea as to whether or not these tests were performed or if so, what the results were (yes I have a cll into the surgeon and will ask.  Anyway, the margins from the first surgery were not clear and I had a MRI done.  The surgeon is recommending a second surgery - lumpectomy followed by radiation, but did mention mastectomy.  .  At first I was very comfortable with this and have actually scheduled the surgery, but now I am concerned this may not be the right path.  Radiation would be difficult due to my job, but then so would the longer recovery period required by mastectomy.  I have read that both treatments are equally effective and that the re-occurrence rate for mastectomy is slightly lower, but have not been able to find statistics.  What questions, additionally information can you suggest to help in making this decision.  Many thanks.

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Jan 3, 2014 02:54PM Lilysdaughter wrote:

i had exactly the same the day i had to start radiation i cancelled everything. I needed more time. I ended up with the mastectomy because i had so many calcifications and have DCIS in both breasts.  I was afraid i would have to go thru many biopsies and the waiting for the results.  Also financially it is very though on us.  I know exactly how you feel i felt the same.

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Jan 16, 2014 10:36PM Tinasas wrote:

thank u so much.

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Jan 18, 2014 12:20AM peptalk wrote:

If you decide to go with a 2x mastectomy, I want you to know that you are going to be fine - actually better than fine.  I have a sense that people who have an easy time don't generally post on these boards.  After being diagnosed with DCIS in my right breast, I had a double mastectomy, with expanders, last July 17th.  I chose the double mastectomy in order to avoid the stress of twice yearly appointments and tamoxifen.  Also, my plastic surgeon told me that he would have to operate on my "good" side anyway if I wanted a symmetrical result.  To me, it just made more sense to me to take care of the problem once and for all.  I'm 44 years old and have 3 kids - breast cancer is not in the plan.

I went into the surgery in good shape (did a lot of extra workouts to deal with the pre-surgery stress), and I found the surgery to be just a little harder than a C-Section.  Unpleasant, yes, but certainly manageable.  I stopped taking pain pills after a few days (although I took them at night for a little longer - it's a bit harder to get comfortable at night).  I read a few books, rested and tried to eat a lot of protein.  Once the drains came out (at 9 days) I felt much better - just a little achy.  By week 2 I felt basically fine - I was going on long walks and drinking wine with friends.  Four weeks out I went on a family vacation and flew to California to visit Legoland and SeaWorld and felt totally normal.  The expanders are a little strange - I agree with another poster who said they feel like turtle shells, but 6-8 weeks out from the double mastectomy I was back to running 4 miles at a time.  I got silicon "gummy bear" implants 5 weeks ago, and my plastic surgeon did a great job.  They look really nice - better than my breasts before, to be honest.  Granted, they don't feel like much and I don't have nipples yet, but I try to focus on being grateful whenever I get weirded out by this whole process.

For me, the most important part is that once I woke up from the surgery and found out that nothing had spread to any nodes (I had 3 removed), the scary stress was over.  It was just a matter of recovering physically.  No more nerve wracking waiting rooms, mammograms or dreadful phone calls.  I just have to check in with my primary care doctor once a year.  

Hopefully this will help someone!  

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