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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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.

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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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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?

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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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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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I am guessing you may have already had surgery. This was the hardest part of my decision and I really did not find much help provided by any of my breast care providers. The care was so disjointed. I was in such distress over it. In the end I opted to keep the healthy breast and felt that it was the right decision for me.

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@canni34

I am guessing you may have already had surgery. This was the hardest part of my decision and I really did not find much help provided by any of my breast care providers. The care was so disjointed. I was in such distress over it. In the end I opted to keep the healthy breast and felt that it was the right decision for me.

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Hi @canni34 and welcome to the Breast Cancer group. Decision making and weighing the pros and cons of the choices is really stressful. Kudos to you for making the right choice for you. How long ago did you have surgery? What type of breast cancer were you diagnosed with? Are you in treatment now?

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I was diagnosed September 1 with a 7 cm grade 3 DCIS lesion. I had such a disconnect between my diagnosis (since they kept telling DCIS cannot spread) and the recommendation for a mastectomy. I just, in my heart, could not understand why I needed to go through that if this could not spread. Of course in my research I learned that in it's purest form, DCIS cannot spread because it is considered contained within the milk duct. I also learned, that with a grade 3 and large size, it was unlikely to stay contained! So it was really hard after I met with the plastic surgeon who told me she doubted I would be happy with the cosmetic result of a single mastectomy with reconstruction. So I made the decision to have a double mastectomy. My heart had no peace with that decision and in the end, since I did not have a genetic marker for breast cancer, I decided the risk and loss of sensation were too high a price to pay for a non-spreading cancer treatment for one breast! I am so happy with my decision. I told the plastic surgeon that I was sorry I made her job harder, but that I believed her to be an excellent surgeon who was up to the challenge! What they accomplished with the mastectomy side is nothing short of amazing. Now to heal and move on to making them match!

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@canni34

I was diagnosed September 1 with a 7 cm grade 3 DCIS lesion. I had such a disconnect between my diagnosis (since they kept telling DCIS cannot spread) and the recommendation for a mastectomy. I just, in my heart, could not understand why I needed to go through that if this could not spread. Of course in my research I learned that in it's purest form, DCIS cannot spread because it is considered contained within the milk duct. I also learned, that with a grade 3 and large size, it was unlikely to stay contained! So it was really hard after I met with the plastic surgeon who told me she doubted I would be happy with the cosmetic result of a single mastectomy with reconstruction. So I made the decision to have a double mastectomy. My heart had no peace with that decision and in the end, since I did not have a genetic marker for breast cancer, I decided the risk and loss of sensation were too high a price to pay for a non-spreading cancer treatment for one breast! I am so happy with my decision. I told the plastic surgeon that I was sorry I made her job harder, but that I believed her to be an excellent surgeon who was up to the challenge! What they accomplished with the mastectomy side is nothing short of amazing. Now to heal and move on to making them match!

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Never an easy decision and everyone has different criteria to weigh from type of breast cancer, health status, risk of recurrence, personal preference, etc.

@canni34, I'm grateful that you added your deciding criteria to this collection of first-hand stories. Did you have reconstruction done at the same time as the surgery to remove the cancer?

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@colleenyoung

Never an easy decision and everyone has different criteria to weigh from type of breast cancer, health status, risk of recurrence, personal preference, etc.

@canni34, I'm grateful that you added your deciding criteria to this collection of first-hand stories. Did you have reconstruction done at the same time as the surgery to remove the cancer?

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Hi, I had the first stage of reconstruction with placement of acellular dermal matrix and tissue expander. The expander is about 1/2 filled with air to give the skin time to heal and strengthen.

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Hello, I am newly diagnosed at Mayo Clinic with Stage 0 DCIS.I am in the decision making stage . I see my surgeon 1/22/2020.
What did you end up deciding on. How did you do?

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@goxango

Hello, I am newly diagnosed at Mayo Clinic with Stage 0 DCIS.I am in the decision making stage . I see my surgeon 1/22/2020.
What did you end up deciding on. How did you do?

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@goxango
What you need to keep in mind is that each of us has a different diagnosis based on the pathology of a biopsy or surgical result. Your surgeon will have your complete pathology report and will be able to best counsel you on options going forward. Prepare for your appointment now by obtaining a copy of your pathology report, looking for information online of the results, and writing down your questions. Keep us apprised of how your appointment goes. We'll be rooting for you.

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