Bilateral Mestectomy

wallis2 said:

Hi Anna,

Hi Anna,

I had bilateral mastectomy only.  My healing process may differ from yours. I am 50 years old and had breast cancer in my left breast with radiation.  The doctor left the door open for me to have reconstruction, but I haven't decided yet.  I don't want to be cut again.  It took me 3 months to heal from my bilateral mastectomy and I had 25 rounds of radiation. You are right when you said they have to check your lumph nodes. I had one infected node.  After my radiation I have to take a 5 year pill and there are some effects from that.  I know this is hard to say not to worry, but it's hard for everyone.  I feel better when I come to this website and chat or read some post.  

 

Hi Annie,

I am 48 yo, had DCIS with nipple-sparing bilateral mastectomy 2 months ago. Sentinel lymph nodes negative. No need of chemo, radiation or Tamoxifen. The first 2 weeks post surgery were very hard, but it gets a litle bit better as the time goes by. I started to drive at the 3rd week.  It has a been a very hard process both physicially and emotionally. Life will never be the same that is for sure. As the time goes by, I feel better although I started to feel a burning pain in the middle of my chest like if I had a bad sunburn.  The doctor prescribed Gabapentin which has helped me some, but makes me feel depressed. The worst for me is the chest tightness due to the Aerofrom expanders for future breast reconstruction, I only had 2 expansions up to this moment because the pain after the expansion is pretty bad. The cosmetic result is pretty good but I have lost all sensation in my nipples, which as a woman is a very very hard pill to swallow.  Although every day is better, it feels like I am wearing the tightest bra ever. It's hard to even take a deep breath. The tightness in the chest is pretty bad,  I have to stretch my arms for several mintes before I get out of bed every day. My surgeons said she wouldn't prescribe physical therapy because I have to do therapy for the rest of my life and I can see that. Somedays I have a burning feeling, somedays I have tingling or sharp pain.  I also have a weird sensation i my chest when I swallow something cold or warm. I guess I just need to get used to it. I am scheduled for the reconstruction in Mid October. WIll let you guys know how that goes. 

Katrina38 said:

Expanders pain

it’s been 2 weeks well 11 days after double masectomy and the pain feels like some is trying to poke out my chest this pain had  me in tears has anyone taken there expanders out early because of the pain . I’m trying to hold on but this is painful and depressing I’m 38 

This is not the answer to your question, but I had bilateral mastectomy 2018 and the doctor left the door open for me to get reconstruction in the future.  I have read these comments and it makes me have second thoughts getting my reconstruction. 

Hi! I had a bilateral masectomy on 9/5/19 and I'm 55 years old in good health. The first two weeks the pain was pretty bad. It felt like someone sawed me in half. The pain killers really helped, so I just set a reminder on your phone to take them as perscribed. Sleeping on my back is a struggle and I will have to do that for 4 months. I wish I had more pillows so I could find a comfortable position. I have gotten prepared meals through a meal train, that helps. Two weeks after my surgery I started feeling my energy coming back and have been able to sit up most of the day. I tried to drive my car today and the pain under my arms and in my chest got to be uncomfortable, so I won't be doing that again soon. Now my pain is more under my arms. I was told I have to rest and should not use my arms, and I'm bored and overly anxious to do something, anything, but rest. I also have expanders and they do not bother me, although they are a little hard. My skin was completely bruised after surgery and today it looks fine. I was told that the feeling in my skin willl come back but it could take a year or more.

Annie

i had DCIS and IDc on both of my breast too, I had double mastectomy my left DCIS 5cm . I just done all my treatment , now I am on Tamoxifen.  I will talk to you more because you have the same case like mine

XRP said:

Bilateral mastectomy with reconstruction

Hi Annie,

I am 48 yo, had DCIS with nipple-sparing bilateral mastectomy 2 months ago. Sentinel lymph nodes negative. No need of chemo, radiation or Tamoxifen. The first 2 weeks post surgery were very hard, but it gets a litle bit better as the time goes by. I started to drive at the 3rd week.  It has a been a very hard process both physicially and emotionally. Life will never be the same that is for sure. As the time goes by, I feel better although I started to feel a burning pain in the middle of my chest like if I had a bad sunburn.  The doctor prescribed Gabapentin which has helped me some, but makes me feel depressed. The worst for me is the chest tightness due to the Aerofrom expanders for future breast reconstruction, I only had 2 expansions up to this moment because the pain after the expansion is pretty bad. The cosmetic result is pretty good but I have lost all sensation in my nipples, which as a woman is a very very hard pill to swallow.  Although every day is better, it feels like I am wearing the tightest bra ever. It's hard to even take a deep breath. The tightness in the chest is pretty bad,  I have to stretch my arms for several mintes before I get out of bed every day. My surgeons said she wouldn't prescribe physical therapy because I have to do therapy for the rest of my life and I can see that. Somedays I have a burning feeling, somedays I have tingling or sharp pain.  I also have a weird sensation i my chest when I swallow something cold or warm. I guess I just need to get used to it. I am scheduled for the reconstruction in Mid October. WIll let you guys know how that goes. 

Same boat here. Had a fat transfer 3 weeks ago. Drains

taken out a week ago. The aerofoam left me with a rash. The feeling in your nipples will eventually return. 

THuff said:

Hi

I am new here and newly diagnosed. I was diagnosed with Invasive Mammory Carcinoma on April 9,2021. I am ER+, PR+ HER2-. I just had a double mastectomy Tuesday May 4th. I have been blessed with no "pain" just soreness. I have tissue expanders in and go Monday for my post-op check up with my plas surgeon. I don't know what to expect. Everything for me happened so fast I don't really think I have truly had time to really process what is going on. Thankfully I have an amazing significant other and a village of friends and family that are supportive of my decision. Any advice or tips on what to expect in the weeks and months to come?

please keep us up to date. my surgery is scheduled on the 28th of May. i need hints what to expect. 

THuff said:

Hi

I am new here and newly diagnosed. I was diagnosed with Invasive Mammory Carcinoma on April 9,2021. I am ER+, PR+ HER2-. I just had a double mastectomy Tuesday May 4th. I have been blessed with no "pain" just soreness. I have tissue expanders in and go Monday for my post-op check up with my plas surgeon. I don't know what to expect. Everything for me happened so fast I don't really think I have truly had time to really process what is going on. Thankfully I have an amazing significant other and a village of friends and family that are supportive of my decision. Any advice or tips on what to expect in the weeks and months to come?

I'm new here and would love to follow your story. I am meeting with plastics tomorrow to determine what I will be doing.  I was diagnosed 3 weeks ago and told on yesterday after having my MRI done that it is larger than what was expected.  So, now instead I have to have a mastectomy instead of a partial. I'm just ready to get it over with it.