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violetita07
@violetita07

Posts: 5
Joined: Jul 07, 2018

Bilateral Mastectomy or not

Posted by @violetita07, Thu, Jul 19 8:28am

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.

Liked by cindylb

REPLY

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

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.

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.

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?

@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

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.

@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.

Jump to this post

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

@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.

@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

Jump to this post

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

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.

@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.

Hi violetita07 and other ladies on the discussion board! I will add in my two cents. I just had my bilateral mastectomy with reconstruction less than a month ago. I had biopsies in both breasts. I learned one breast had cancer the other tested out benign. The diseased breast had several large masses that all tested malignant and a lumpectomy was not deemed 'ideal' due to the amount of tissue removal involved so a full mastectomy was indicated for that one breast.

I am a research nut and did copious research on the subject and also had 2 consults with the breast surgeon and 2 with the plastic surgeon before deciding. I also spoke with my spouse, 2 children and daughter-in-law who's a nurse. During my weeks of contemplation and research, I subscribed to MedScape and read many of their published medical studies of mastectomy and breast cancer survival rates, surgery options, decisions made by patients who chose a particular option and comments from nurses and surgeons. I also searched every article I could on the internet and read many patients' comments.

In the end, I decided to remove both breasts and do immediate implant placement in both. I knew I had to have reconstruction as I would be too depressed otherwise. Mental health is equally as important as physical health and should be considered as carefully, in my opinion.

My reasoning for doing a bilateral mastectomy rather than a single is as follows:
* If both were done at once, the plastic surgeon would be able to reconstruct both breasts at the same time and be better able to match them utilizing the new Alloderm artificial skin and identical silicone breast implants.
* I currently have excellent insurance and who knows what I may have years from now if the healthy, remaining breast were to develop something.
* I will never be younger than I am now, and my chance of a good recovery should be better now than years down the road (if cancer were to develop again).
* I would have one time off from work, one (longer) procedure day, one hospitalization, one anesthesia, and one recovery.
* Both breast gone = no further mammos, MRI's, no chemo, no radiation, (hopefully??) and no further worry about the other shoe dropping with the remaining 'healthy' breast developing something down the road. I have read how women who have cancer in one breast must go in and have any remaining breast tissue looked at and poked and prodded for the rest of their lives. I wanted to avoid that if I could. Who needs more stress and worry?
* In addition, my healthy breast had been banged up pretty good with a stereotactic biopsy and had developed a large, hard lump and depression at the point of entry. I felt that it was now injured and may be more susceptible to getting cancer (gut feeling) which further directed me to going forward with both mastectomies.
All-in-all, I am currently glad I chose as I did, however I am still in recovery and may come to a different conclusion later, but so far I am glad that I chose as I did.

@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

I’m in the same boat weighing pros and cons. It’s easy for others to say do both! Insurance will cover new perky ones. Everything I read is you may have a nice new matching set but they have no feeling and can be colder. Surgeon told me there is no reason to remove the other since my cancer is very early stage DCIS on the left. By removing just my left my chances of cancer on the right as the same as the general population. I’m definitely having reconstruction just not sure what yet, I speak to the plastic surgeon tomorrow. I’ve been on the internet pretty much everyday looking at images of reconstruction after awhile they all look the same.
Would like to hear from others that had a unilateral masectomy. Thoughts?

@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

Hi, @octoberred, I had a bilateral mastectomy (one breast was cancerous, one prophylactic) with immediate breast implants. I am now 4 weeks out. I requested the skin and nipple sparing procedure. Luckily, they were able to spare both successfully. Currently, I still have tape over my 5-inch incisions and will (by choice) leave this tape or another fresh strip of Micropore tape on for at least 3 months for scar refinement. I am quite pleased in that I do have some sensation in my breasts that I was not expecting. Here is what I have:
If you were to draw a circle around my breasts, all the skin outside the circle has feeling above and below the breast, but the area from the armpit down to the bottom of my breast is numb and painful.

Now, inside the circle (the breast itself) one half of the breast has feeling and one half is numb! The outsides of the breasts, from the outside edge of the nipple are numb, but the inside of each breast (including the nipples) have normal sensation! And actually, my nipples are fairly painful right now which is not surprising, considering. So that is good.

Regarding feeling cold, I have silicone implants and my skin and the implants feel as warm as the surrounding skin. I am a low thyroid and know that I would not like the cold feeling if it were to occur, so I am glad that is not the case for me.

I don't know if this information gives you anything more to think about. Good luck to you.

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