Forum Discussion

Twilightgirl's avatar
Twilightgirl
Member
10 years ago

Having double mastectomy and reconstruction

Hi I was recently diagnosed with breast cancer and also have the Brca1 Gene. Doctors had been doing regular checkups mammograms and MRI's since finding out i had the Brca1 Gene and doctor would always ask me if i had thought of having a mastectomy so that i will not get cancer there as there is a strong possibility of getting breast cancer with the Gene but i said no i will come to that decision only if i get breast cancer as they said they would be able to catch it early, My last mammogram came up with something so they done a fine needle biopsy and when i got the test results back in a week they said they could did not get any samples from that so was unable to test it so then they put me in hospital to have a surgical biopsy and a week later go to the doctors for him to tell me it was cancer and a fast growing cancer in my left breast. So went to the doctor today to talk things over after thinking alot for a week and i come to the decision i want to have a double mastectomy as i do not want to risk it coming back after having the cancer taken out and have heaps of operations, and he said that was a good decision so i am having a double mastectomy on the 23rd of March and reconstruction at the same time, Also the doctor said after the operation that i would need to have some chemo, So I thought it would be a good idea to be in this group to hear about other people going through the same thing as me. So if anyone would like to tell me what there experiences were with mastectomy's and reconstruction I would love to hear it.

BRCA1-BRCA2
mastectomy
Reconstruction
  • Twilightgirl's avatar
    Twilightgirl
    Member
    10 years ago

    Yes that helped a lot Thankyou. I will do as you say and take one day at a time. Received my temporary breast prosthesis yesterday from cancer council I thought that was quick seeing my op is not till the 23rd

  • Ruth_Bird's avatar
    Ruth_Bird
    Member
    10 years ago

    They had to remove my nipples as well - it seems to be a pretty common thing. There is an option to have nipples created for cosmetic purposes down the track. It's not something that has to be done straightaway, and you don't have to decide that now. At this stage I don't think will bother.

    When they switch to implants depends on how long it takes to fill your expanders to the desired size. You may find when you wake up there is already some saline in the expanders - I had 200 ml in each which gave me little boobs that I was pretty happy with. After 3 weeks I had 60 ml injected (the skin was numb so painless) into each and again 2 weeks later. The plastic surgeon and I are happy with 320 ml. Others go higher. That's your choice. And after at least 2 months from the last fill - time for inflammation to settle etc - the exchange occurs. That can happen many months later but was advised 2 months minimum.

    No one can say how long you will be in for - that depends on how things are going (drains, pain, wounds etc). The key thing is probably finding out their policy on sending home patients with drains. My surgeon kept me in until drains came out. Other places send women home with the drains and teach them how to manage them. But nothing is fixed..I got told various contradictory things and in the end just thought f*** it I'll just take each day at a time and speak up if something sounds like bullshit. And enjoy the fine hospital food.

    Once the boobs were gone I felt a lot of relief. The risk of cancer had essentially gone. 

    Lyrica was good for pain - is a nerve specific pain drug. Can use other standard pain drugs including narcotics with it. They will look after you! And it will settle. You can do it!! Don't be afraid to speak up - about pain, about the drains, whatever.

    Hope that helps :)

  • Twilightgirl's avatar
    Twilightgirl
    Member
    10 years ago

    How long do u normally have to wait after having the op to have the implants put in and the breast nurse said I will be in hospital for 3 days and the drains should be out by the time I go home but I look online other women that recover from it have had the drains in for a few weeks

  • Twilightgirl's avatar
    Twilightgirl
    Member
    10 years ago

    I have to have expanders and then later on implants just not looking forward to the pain but I suppose you need to have pain before it gets better. I go Friday next week to talk about the chemo I need to have done as well and find out when they have to start that. Wanted to have the skin sparring mastectomy and try to save the nipple but they said they cannot do it that way because of me having brca1 gene otherwise cancer might grow back so once all done I will have to look into having nipples done.

  • Ruth_Bird's avatar
    Ruth_Bird
    Member
    10 years ago

    Hi twilightgirl

    I had bilateral mastectomy with expanders about 9 weeks ago, and due to have switch to implants midyear. 

    As Tanya said, there are several reconstruction types and your surgeon  can advise which is better for you. My build wasn't suited to the other recon types. Surgeon and plastic surgeon did a great job and worked well as a team. Think the op took a few hours, had four drains after and stayed in until they had minimal drainage, which was 9 days. Was quite painful for a few days and glad to have hospital bed with those controls to prop up etc.

    Looking at pre and postop photos online was very confronting initially but helped prepare for later. 

    Walking has been a wonderful way to gently build up strength and confidence. As Tanya said, even when you don't feel like it. 

    It was all worth it. Good luck!

     

  • lrb_03's avatar
    lrb_03
    Member
    10 years ago

    Have you joined the breast reconstruction group, on this site? I believe it's worth it. 

    Take care, Lyn