Bilateral Mastectomy or not

Posted by violetita07 @violetita07, Jul 19, 2018

Hi everyone, I was diagnosed with dcis stage 0 breast cancer on June 1st. Since then they have found several other suspicious lumps I have decided to go ahead and have a mastectomy and sentinel lymph of the right breast. Still trying to decide whether or not to have a bilateral mastectomy. It would just be for preventative measures since they have not found anything in the left breast. Just wondering about others thoughts and experiences for making this decision.

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I had a left mastectomy in 2001. I had been unable to wear a prosthetic comfortably. The problem is stopping the bra from riding up when sitting down. Hope you make the right decision for you. Good luck

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This is such a personal decision and you don't need to rush into that decision. Take the time you need to 'try on' various scenarios. I was first diagnosed with LCIS (Lobular) Stage 0 about four years ago. I think when we hear breast cancer it's quite a shock and very scary - no matter the stage. I had a lumpectomy of the area in my left breast and was monitored closely for two years. Two years later I had breast cancer again, this time in my right breast. It's not uncommon to have Lobular bi laterally. I think it's less common in ductal from what I've read. I had a bi lateral mastectomy at the time my second breast was affected. I am pleased with my decision to have both breasts removed because I have symmetry (no reconstruction) and I have less worry about on-going tests, chances of cancer and surgeries. My doctors gave me options but didn't question my choice because I had cancer at that point in both breasts. If I had known that the cancer was continuing to grow and was in both breasts I would certainly have the bi lateral mastectomies with the Stage 0 but there are no crystal balls and I did not. I could have avoided the stress of waiting for the lymph node details during the mastectomy. I was lucky (so far), my cancer had not spread to my lymph nodes but I was diagnosed with Stage 1 cancer that was invasive and had the chance of spread throughout my body. With earlier intervention I wouldn't have had to endure that.
I developed a bit of lymphedema with my mastectomies (with sentinel node removal and testing) and that continues to be a concern and was a significant struggle initially. During my physical therapy my very young, pretty PT doctor shared with me that she had bi lateral mastectomies when diagnosed with Stage 0, party due to her young age of cancer diagnosis and also because she had seen many women like me struggle with lymphedema from the node surgery and she wanted to avoid that at all costs. It was an eye opener for me because basically she had inside knowledge of the additional struggles that occur with node biopsy.
Doctors don't want to 'over treat' patients and you don't want to go through more than you have to. Perhaps your cancer will never come back. But, in hindsight, knowing what I now know..........I would have opted for the bi lateral mastectomies at the Stage 0 diagnosis......but I'm still here today and relatively healthy and I was lucky to catch my cancer the second time around at an early stage. Hugs to you.

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I would suggest to get all necessary tests on the other breast, if everything is negative, why rush to have it removed. Have another doctor or cancer center review for 2nd professional opinion.

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Welcome to Connect @violetita07 and @rejoys,

I'm so glad to see that @cindylb and @elvandi have connected with you. I'd also like to introduce you to @jusme @chamisa @wendyh @zazu @djankord1 @teege1 and I hope they can share some of their insights about bilateral mastectomy with you.

@violetita07, what questions do you have about this surgery? May I ask if anyone in your family has been diagnosed with breast cancer?

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@kanaazpereira

Welcome to Connect @violetita07 and @rejoys,

I'm so glad to see that @cindylb and @elvandi have connected with you. I'd also like to introduce you to @jusme @chamisa @wendyh @zazu @djankord1 @teege1 and I hope they can share some of their insights about bilateral mastectomy with you.

@violetita07, what questions do you have about this surgery? May I ask if anyone in your family has been diagnosed with breast cancer?

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Well I was told that my risk for cancer on my left breast was very low. But still trying to decide for peace of mind whether or not to have the bilateral. My sister was diagnosed at age 52 (3 years ago). She’s the only one from my immediate family. Just want to know what we’re the deciding factors for others.

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@elvandi

I would suggest to get all necessary tests on the other breast, if everything is negative, why rush to have it removed. Have another doctor or cancer center review for 2nd professional opinion.

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Thank you. I have had sonogram and MRI on left breast and everything has come back negative.

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@cindylb

This is such a personal decision and you don't need to rush into that decision. Take the time you need to 'try on' various scenarios. I was first diagnosed with LCIS (Lobular) Stage 0 about four years ago. I think when we hear breast cancer it's quite a shock and very scary - no matter the stage. I had a lumpectomy of the area in my left breast and was monitored closely for two years. Two years later I had breast cancer again, this time in my right breast. It's not uncommon to have Lobular bi laterally. I think it's less common in ductal from what I've read. I had a bi lateral mastectomy at the time my second breast was affected. I am pleased with my decision to have both breasts removed because I have symmetry (no reconstruction) and I have less worry about on-going tests, chances of cancer and surgeries. My doctors gave me options but didn't question my choice because I had cancer at that point in both breasts. If I had known that the cancer was continuing to grow and was in both breasts I would certainly have the bi lateral mastectomies with the Stage 0 but there are no crystal balls and I did not. I could have avoided the stress of waiting for the lymph node details during the mastectomy. I was lucky (so far), my cancer had not spread to my lymph nodes but I was diagnosed with Stage 1 cancer that was invasive and had the chance of spread throughout my body. With earlier intervention I wouldn't have had to endure that.
I developed a bit of lymphedema with my mastectomies (with sentinel node removal and testing) and that continues to be a concern and was a significant struggle initially. During my physical therapy my very young, pretty PT doctor shared with me that she had bi lateral mastectomies when diagnosed with Stage 0, party due to her young age of cancer diagnosis and also because she had seen many women like me struggle with lymphedema from the node surgery and she wanted to avoid that at all costs. It was an eye opener for me because basically she had inside knowledge of the additional struggles that occur with node biopsy.
Doctors don't want to 'over treat' patients and you don't want to go through more than you have to. Perhaps your cancer will never come back. But, in hindsight, knowing what I now know..........I would have opted for the bi lateral mastectomies at the Stage 0 diagnosis......but I'm still here today and relatively healthy and I was lucky to catch my cancer the second time around at an early stage. Hugs to you.

Jump to this post

Yes I would hate to have to go through a bilateral and it be unnecessary but I would hate to have to go through it more than once. Thank you.

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@rejoys

I had a left mastectomy in 2001. I had been unable to wear a prosthetic comfortably. The problem is stopping the bra from riding up when sitting down. Hope you make the right decision for you. Good luck

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Thank you. Something I hadn’t thought about. Thanks.

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I was diagnosed at age 63 with Grade 2-ER & Pro+-HER negative. My one sister who is 2 yrs younger had same type of tumor found when she was 52 on Right breast. Mine was found in Left breast. She has been in remission after lumpectomy & radiation & Tamoxifen & Aromatase. I felt strongly that I wanted a bilateral mastectomy so I wouldn't have to have radiation or any further fears of more cancer. My surgeon at Mayo-Rochester Dr Ratz convinced me & my husband that the lumpectomy could be out patient & would require 6 weeks of recuperation, whereas the mastectomy could be 6 months to a year or more of recuperation & required 2-3 days of hospitalization. They found during lumpectomy I also had low grade DCIS so had wide margins but all neg & also 2 Sentinel nodes taken that were neg. After 15 radiation targeted to left breast only, I feel better than I have for years. I continue to take the Tamoxifen & will for 5 years. Only side affect I have had is inability to wear pieced earrings due to itching & burning. I am very happy that I changed my mind & hopefully my outcome will be similar to my little sister. We are the only one out of 5 girls & one boy to have breast cancer. I have & will continue with prayers & yearly mammograms & close watching every 6 months by Breast Clinic nurses.

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@kanaazpereira

Welcome to Connect @violetita07 and @rejoys,

I'm so glad to see that @cindylb and @elvandi have connected with you. I'd also like to introduce you to @jusme @chamisa @wendyh @zazu @djankord1 @teege1 and I hope they can share some of their insights about bilateral mastectomy with you.

@violetita07, what questions do you have about this surgery? May I ask if anyone in your family has been diagnosed with breast cancer?

Jump to this post

Mastectomies are major surgery with general anesthesia. After cancer, that is what scared me the most....but I had no complications or difficulty with my surgery. I did find the recovery pretty easy. I had a great deal of fluid buildup and anyone that you talk with you has a mastectomy will say the drains they insert for the fluid is the worst part. It's not very painful and I was up and back to work in 5 weeks. Over the course of the following year you do need to make sure you're doing some physical therapy, possibly massage therapy and healing well. But, overall.....when you think about it. A breast isn't an 'internal' organ (as much as say your intestines or something). They're pretty easy to remove successfully. I was only in the hospital one night. A second night was an option but I felt I'd be more comfortable at home and I had my husband to help me. I was fortunate (and surprised) to find 3 good friends who had mastectomies to talk with before and after my procedure. Two did reconstruction and one did not. Along with this site and lots of research, as well as the guidance of my doctors and nurses..........the right decision for me was the bi lateral (but I'd had cancer in both breasts). Hugs and good wishes as you make your decision.

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