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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May 24, 2021 04:13PM - edited May 24, 2021 04:14PM by AwesomeR

I was diagnosed with DCIS grade 3, in April 2021, have had 2 lumpectomies, both times they found DCIS in the tissues removed. The surgeon is recommending I have another lumpectomy to remove the remaining tissues as there is not much and she would reach the chest wall. I have been going back and forth between lumpectomy and mastectomy, not sure which decision would be the right one. What if I have the third lumpectomy, and they find more DCIS, do I have to do a mastectomy after that?

Thank you for any help or advise youl can offer.

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May 27, 2021 08:44AM moderators wrote:

Welcome, AwesomeR! We're bumping this thread so that hopefully someone experienced will come and give you some advice. Thank you all in advance!

The Mods

To send a PM to the Mods: community.breastcancer.org/my/...
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May 27, 2021 09:10AM jetcat wrote:

AwesomeR- I don’t have the deep technical knowledge that you will get from others on this board but I have had DCIS twice in same breast and every instinct I have would advise that you think seriously about mastectomy at this point. I don’t know whether you are thinking of reconstruction but it would be better to do that when you haven’t had radiation. On the other hand, you may be comfortable with close surveillance after your lx and radiation so that you catch a possible new DCIS/IDC early. I wasn’t prepared for the second occurrence at all but if you are aware that this can happen, you can just factor that into your decision. It’s a very hard decision and I wish you well!

Hopeful Dx 2017, DCIS, Left, Stage 0, Grade 3, ER+/PR+ Dx 2019, DCIS, Left, Stage 0, Grade 3, ER-/PR-, HER2- Surgery Mastectomy Radiation Therapy Surgery Lumpectomy
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Jun 13, 2021 02:56PM sorrel wrote:

I am newly dx with high grade DCIS. I really need some support. Not sure where to post. Quite overwhelmed. I had to take a break from my boyfriend too because he was adding to my stress.


Sometimes he was supportive and sometimes the opposite.


I am struggling. Please could someone reach out to me .


Thank you,

Sorrel

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Jun 14, 2021 01:08PM jetcat wrote:

Hi Sorrel- so sorry you’re dealing with this challenge. The emotions can be overwhelming. Please know that you are not in imminent danger and you will get through this. Maybe make a list of your questions for your care team - There’s excellent info on this site. Then once you have your plan, focus on one step at a time. I can tell you that every part of my treatment turned out to be so much easier than I imagined. Surgeries were very easy - I was able to go home the same day for both lx and mx which was my choice. I was very afraid of radiation and that was easy as well.

Take care


Hopeful Dx 2017, DCIS, Left, Stage 0, Grade 3, ER+/PR+ Dx 2019, DCIS, Left, Stage 0, Grade 3, ER-/PR-, HER2- Surgery Mastectomy Radiation Therapy Surgery Lumpectomy
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Jun 14, 2021 04:08PM livinlife wrote:

Sorrel - Welcome! You are in the right place! So glad you reached out for support..... Jetcat is correct in how supportive and informative this site is.... You can leave your post here or you could begin your own in the DCIS forum.... whatever you're most comfortable with. Sorry you're getting the back and forth with your boyfriend! We are here and I hope others will respond yet too.... Please feel free to share your thoughts and feelings in other threads your reading b/c that can be therapeutic too. Do you have info yet on ER or PR positive or negative, size, comedo necrosis or not, when you meet with a surgeon, etc. Check out the surgery forums too - June even if your surgery ends up being in July, etc. These forums were invaluable to me in the very early days. Jetcat is right that once you know more about your DCIS and have a plan things get much better - you just follow the steps....

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy; Mastectomy (Left); Prophylactic mastectomy; Prophylactic mastectomy (Right)
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Sep 10, 2021 03:21AM okbecca wrote:

I had a bmx 5 1/2 years ago and have been cancer free since. I was diagnosed with a 6 mm DCIS, grade 2 with clean margins. I never considered anything other than a bmx because I believed there was more cancer than the scans showed. Also, I didn't want to take radiation or hormone suppressants. I wanted a bi-lateral because I wanted to be done with this, once and for all.

The pathology on the bmx discovered that I had several small areas of dcis and lcis in both breasts that the scans had not shown. I know this is going to sound odd, and you don't have to believe me if you don't want to, but I already knew they would find that. I had told my husband and all my friends that there was more cancer. I'm not sure how I knew, but I knew it. I've never been more certain of anything.

I'm very glad I chose the bmx. I did not have reconstruction because I didn't want any more medical treatment than I had to have to get rid of the cancer. All I wanted was to walk away from this clean and live on. The only thing I would do differently is that I would walk out on an obnoxious radiologist who tried to bully me into having radiation instead of a bmx against my will. I should never have put up with him.

Dx 12/16/2015, DCIS, Right, <1cm, Stage 0, Grade 2 with Necrosis, ER+/PR+; LCIS Right; DCIS right, 3mm, grade 3. IDH Left. BMX 3/7/16
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Feb 13, 2022 12:18PM dvcmom3 wrote:

Hello in 2019 I went with the Lumpectomy and radiation been on Tamoxifen since July 2019... It is the worst medication I have ever had to take the side effects are a horror . Had normal Mamos and sonograms till this past week . While I was lucky that after a biopsy this week the results are no cancerous cells. I do think about mastectomy if they find something else and I have to say I would do it but would also have them replaced . These are all personal decisions and so difficult to make . At work there are 4 of us all in the same type of situation ( i work in a school we are mostly women teachers ) we have been a support for each other . One has had a mastectomy on one side and then went to have it reconstructed she says if she had to do it again she would do it the same way again . IT really helps to find support in person the hugs and talking really help !

Dx 4/25/2019, DCIS, Left, Stage 0, ER+ Radiation Therapy 3DCRT: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 30, 2022 07:32PM ilovecatsandfiddle wrote:

Reading this thread was so enlightening and touching. I've struggled to find people who have DCIS and I was finally able to bring myself to be proactive and look. Thank you to all who shared! My surgery is scheduled for April 15. I have DCIS stage zero and another spot that is DCIS with micro invasions at stage 1A. All of my factors added together have helped me make my decision -- plus my gut instinct. I'll be getting a BMX; and I really hope I feel this way afterwards. Here were the factors at play:

I am 41 and have small boobies. My family has three generations of breast cancer in every women on my ashkanazi side. I have the CHEK2 gene (which doesn't seem half as scary as BRCA, however it still made it all that much more real). The stereotactic biopsies were very, very painful. And, I wasn't crazy about the MRI experience (I had a panic attack in the middle of it). So, perhaps if one of these boxes were not checked, I would've felt more comfortable with the lumpectomy. Although I'm still scared of the surgery itself, my instincts feel so strongly that this will be the right decision for me.

I do feel that it's so different for everyone. It was very helpful to read about all of your experiences. Thank you!

Surgery 9/2/2022 Mastectomy (Left): Nipple Sparing; Mastectomy (Right): Nipple Sparing; Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant
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Oct 23, 2022 11:11PM busymomof3cat1 wrote:

Hi, I am new to this site. I was diagnosed with DCIS in October of 2021. It has been quite the journey this year. I elected to have a bilateral mastectomy with reconstruction: 1. because my mother died at age 53 from breast cancer. I watched her for 7 years fight a hard battle, but the cancer was stronger. I refused to go through what my mother did. 2. I am not one to put chemicals of any kind in my body if I don't have to. So removing the breasts meant I would not need to have chemo or radiation or take the drugs for several years.

I did a lot of research and I had genetic testing done before I made my decision. A lot of breast cancer diagnosis that are treated with lumpectomy and treatments seem to have a recurrence within 5 or so years. I did not want to deal with this again, having the anxiety every year when I went to have my mammogram if this was the year it would return.

I am 62 years old and will be retiring soon. I don't want my retirement years to be spent at doctors offices and hospitals.

I had a great experience with the bilateral mastectomy, done in March of 2022, however the next evening after the surgery I developed a hematoma on the left side and had to go back into surgery to remove it. Then as I recovered at home, my right side (with expander) had an infection that would not go away. Ended up having the expander removed in April. Then had to wait until July to have an expander put back in. Have been getting along well since then. Am ready now to have the permanent implants put in. That is scheduled for October 31.

Praying that I recover quickly and feel more like my old self. At least there will be NO DRAINS this time!! They are the worse.

Will have my nipples tattoed on, plastic surgeon says I have to wait 3 months for that. Will be so thankful to come to the end of this journey. I have tried to remain positive throughout and my family has been wonderful.


Surgery 3/3/2022 Mastectomy (Left): Skin Sparing; Mastectomy (Right): Skin Sparing

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