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.

Interested in more discussions like this? Go to the Breast Cancer group.

@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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@elizm

@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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Thank you so much! I am awaiting genetics and some other tests. I talk to the surgeon on 1/22/21.
I do have a lot of different things to consider. I am grateful for this group!

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I did not have a mastectomy but I did have my breast implants removed. This left me flat as a board with a ton of scars. Best decision I ever made for my health. I am not ashamed of the scaring and still feel great about myself and decision. Sending love to get you through this tough decision you are faced with.

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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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I will answer for myself and sister who does not follow this forum.

I had Stage 2 DCIS so my treatment plan will be different then yours. I had lumpectomy, chemo and radiation. Diagnosed in 2018.

My sister diagnosis is similar to yours. She was diagnosed with Stage 0 DCIS in Nov 2020, Hers was found early during routine mammogram, had a biopsy, follow up appt at Mayo Breast clinic and given the choice to monitor or surgery. She chose surgery, area removed and margins were clear. Nothing new was found and after surgery she had follow up at Breast Clinic and will be taking AIs and monitored in future. No chemo or radiation required.

Just a warning, after surgery the drs scheduled appointments with radiation and other drs. She became concern thinking they found something they had not told her. It turned out they had scheduled the appointment just in case they were needed. Once pathology reports came back, those appts were cancelled.

I had genetic testing after my diagonals and no reason to suspect cancer was due to genetic, just coincident that both me and two sister ended up with breast cancer. All three of us selected lumpectomy.

I think the most stressful time was right after diagnosis, once a treatment plan is established my stress level was reduced.

Prepare questions prior to your surgery appointment and if possible bring someone with for support or another set of ears to listen to what drs tell you.

Hope you the best

Laurie

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I’m a 0 stage and am planning on double mastectomy in June due to radiation that I received many years ago for treatment of Hodgkins that is causing DCIS. I’m 64. Scary

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