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Double Mastectomy

Olive Oil
Posts: 7
Joined: May 2019

My Niece is in her 40's and is going to have a double mastectomy.   She would like to have them both done during one surgery.  Her surgeon is telling her she has to have 2 separate surgeries, i.e. one breast and a separate surgery for the other breast.  Has anyone else had this experience?  Has anyone else had both breasts removed at the same time?  Thank you!!

Ann

Elaine_wi's picture
Elaine_wi
Posts: 119
Joined: Jun 2017

I have never heard of any surgeon removing only one breast at a time. Are you sure she completely understood her surgeon?

Olive Oil
Posts: 7
Joined: May 2019

Thank you Elaine.  I'm going to check with her.

 

wallis2
Posts: 49
Joined: May 2019

Hey, I had a double mastectomy and this is the first I heard having two seperate surgeries by removing one breast at a time. I wouldn't want to go back under the knife twice.  Yes talk to the surgeon to see if their was a miss communication.  I have heard of double mastectomy and later reconstruction for the second surgery, even some people have that done at the same time, but I opted out of reconstruction.  The doctor did leave the door open for me just in case I change my mind.  

Nedsupport
Posts: 10
Joined: Mar 2020

Hi i just read your post that you opted out of reconstruction. Do you have any regrets? Do you use prosthesis? I am indecisive about reconstruction or prosthesis.

Apaugh's picture
Apaugh
Posts: 856
Joined: Aug 2016

I think, as most do, if your have a double, it is at the same time.  I am not a doc but that makes sense.  I had both mine removed at same time.  The thought of having that done on two different surgeries is awful.   Get a second and a third opinion.  

Hugs,

Annie

ftaylor1960
Posts: 2
Joined: Nov 2019

I can't imagine having first one, then the other. If it is true that's what they told her, I'd suspect the surgeon is trying to make more money. I had cancer in one breast and decided to go the double route because they said it would cost the same as a single (glad I did because they found "pre-cancerous activity" in the second after they removed it).

Tell your niece to get a second opinion, and maybe a third, at a different clinic, if possible. 

Annette 11
Posts: 380
Joined: Sep 2010

olive oil Yes i had both breast removed in One surgery. Gone...

No problems...

ts72
Posts: 5
Joined: Jun 2020

Would any of you that had a mastectomy share any tips or suggestions? Full of fear.

Trailrunner
Posts: 11
Joined: Dec 2017

Hi!  I had a double mastectomy with immediate reconstruction in November 2017.  I am happy to share my experience and any tips or suggestions.  Do you have specific questions?

 

Chris

Sabine28's picture
Sabine28
Posts: 1
Joined: Sep 2020

Hello

I'm glad your surgurey went well!

I was tested BRAC 1 positive and as a precaution I'll have (or at least I'm advised) to have my breast removed and get a prothesis instead.

I already has a mastectomy back in 2015 after I was diagnosed with stage 2 breast cancer and I'm worried about getting that breast reconstructed because sometimes I read about surgeries that had failed and it's scary.

I would really appreciate any tips or any information coming from someone who went through the process.

Thanks a lot

wallis2
Posts: 49
Joined: May 2019

Hi ts72,

I want to tell you my lump was in my left breast, but I decided to do both.  This was my decision. After my bilateral mastectomy I was in pain, but not where I couldn't tolerate.  I had drainage cups for weeks and I had to measure it daily. I went to my follow up and they checked the drainage I measured.  At one point in time, I felt a discomfort, like a fluid build-up on my upper chest and the doctor wanted me to come in to get it checked out.  I am glad I did because I had fluid build up and the doctor took care of it.   ts72 always do what you doctor tells you to do and please ask lots of questions.  I feel a sense of little tightness across my chest where I was cut and tingling.  I exercise and do a lot of stretches.  If only I can stop feeling this little tightness, I can feel a little normal.  If anyone have any ideas, suggestions, or anything I can purchase to relieve this little tightness across my chest I would greatly apprecitate it.  It feel more like muscle tightness.  One more thing ts72, before you try something or take anything please consult with you doctor first. Thanks

ts72
Posts: 5
Joined: Jun 2020

Hi wallis2,

Thank you for sharing your experience and tips. My surgery is tomorrow and am scared! How long ago did you have your surgery that you still have this tightness and did you have reconstruction done? Hope that you find something that can help.

Again, thank you!

wallis2
Posts: 49
Joined: May 2019

I opt of having reconstruction.  The doctor left the door open just in case I change my mind.  I had so much extra skin the doctor tucked some under my arm and I have a little flab on both sides but I got use to it, not that much flab.  The tightness isn't so bad now that I do exercise, but over all I am good.  I asked the doctor about it and they said exercise is good.  

chrissie59
Posts: 4
Joined: Jun 2020

Hi Chris, i am in the same boat.  just diagnosed last week with dcis stage 0 in one breast.  they can't do a lumpectomy because it's in too many places.  i keep going back and forth about getting 1 mastectomy and just a breast lift on the other side or get them both off and reconstruct and i don't understand why i can't have immediate reconstruction.  thoughts?

Jill0318
Posts: 1
Joined: Jun 2020

Hi Chrissie - I opted to have a double mastectomy June 2012 - I was given the option to have a lumpectomy, singe masectomy or double. I remember going back and forth on my decision making - it is such a personal choice. But I will tell you this, after 8 years of being cancer free, I look back and think why was I so worried - they are just boobs.   For me I had been getting ultra sounds for years based on my dense breast tissue and the amount of cysts I had in both breasts.  I personally felt the need to do as much as I could to prevent going thru this again. I had the double mastectomy and immedaitely had the expanders put in.  Just about a year later the expanders were removed and the implants put in.  Not sure why they wont allow you to start the reconstruction process immediately? They had to take my right nipple because of the location of the cancer and i also opted to remove the left one.  Not sure why I chose that, I guess i just wanted a clean slate. Praying for peace for you.

 

Naplesin2020
Posts: 3
Joined: Jun 2020

I am scheduled for surgery at the end of August and moving forward with dbl too as I am afraid of it coming back in my other breast. How long was the recovery period before you are up and about and able to do simple household tasks?

 

 

wallis2
Posts: 49
Joined: May 2019

Hello,  when I had my double mastectomy, I went back to work after 2 months.  Keep in mind everybody's body is different.  Its really depends on how you heal and/or how well you cope with pain.  I was in pain, but of course the doctor gave me something for pain.  I still feel a tightness, but overall I am ok

Naplesin2020
Posts: 3
Joined: Jun 2020

Thanks for sharing! 

ts72
Posts: 5
Joined: Jun 2020

Hi Jill0318,

My surgery is tomorrow for a double mastectomy and am so scared. The last few weeks I have been so worked up and full of anxiety. Hopefully one day, I will look back and feel the way you do. I, too, will have the expanders immediately put in and the nipples removed. Can I ask why you waited so long to get the implants or was it not a choice? I was told I can get them as soon as I heal or as later as I want to wait. More personal and bothersome (at least to me still), can you tell me how you adapted (emotionally, mentally, psychologically) to no nipples?

 

Madalina
Posts: 2
Joined: Jul 2020

When you read this, the hardest part is over!!! You got this! I was there 3 years ago. I do think about my journey, but I am in awe of how strong it made me, more than anything. I had the expanders inserted at the time of ther surgery, and waited 3 months with them, until they were changed for silicones. My breasts (with expanders) were extremely hard, literally like baseballs, so expect that...I got to keep my nipples, but I am sure your doctor told you they can reconstruct them. I actually found out after the surgery that they spared my nipples (they were not sure they could), so I was prepared for having the doctor reconstuct them. I made peace with that thought, but given I did not have the full experience it, I have no advice about this...I am here, if you need to talk about anything.

ts72
Posts: 5
Joined: Jun 2020

Hi Madalina.

Thank you for your reply and sharing. I am on day 3 after surgery - still hurts and like you said, the expanders feel hard. I didn't know if that was the expanders or if I was swollen or both. When you say the hardest part is over, does that mean when they put the implants in, it won't be this painful? 

Madalina
Posts: 2
Joined: Jul 2020

Hi Chrissie,

I was in the same boat 3 years ago. Stage zero DCIS in my right breast. They did a lumpectomy, but I was told there are 15 % chances of reoccurrance if I do not have surgery (or radiation). I opted for a double mastectomy (my left breast was healthy), but it was a matter of aesthetic, and I will never regret it. One of my friends had unilateral mastectomy, and her breasts look very different. I had immediate reconstruction (but it was not fully done). The silver lining for me was to have bigger breasts, so I opted for a small augumentation. I was told that immediately after the mastectomy, the plastic surgeon would start the reconstruction, but instead of silicons, he would implant expanders, to stratch my skin and muscles. The same happens when you go from biggers, to smaller, apparently). So it took me an additional surgery to finish the reconstruction (I had to wait for 3 months with the expanders). I am happy with the end result, overall, and again...I am glad I did them both, for symmetry reasons, and also, as I did not have to do stress about any abnormal activity in my healthy breast. Wishing you the best when you make your decision...this was the hardest part for me. 

chrissie59
Posts: 4
Joined: Jun 2020

i changed my mind and am requesting the double mastectomy since i won't be able to feel anything anyway, they might as well look good.  my surgery is on thursday and i am sobbing and scared and up all night.  it will be a year of procedures to get results.  i keep trying to tell myself how lucky i am that it was caught so early, but even though i will keep my life my breasts will be gone and forever scarred.  i wish i was strong enough to not get reconstruction but i had no idea i would feel so strongly about losing my boobs.  i can't bear to undress and see those scars and no  boobs 

anniemshe's picture
anniemshe
Posts: 72
Joined: Oct 2017

You have a right to make the BEST decision for yourself. There's no shame in that. It's not easy to lose any part of your body!! You be positiv, think good thought!! All the best 

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