hello I am newly diagnosed and have bc in left breast very lumpy complex right breast and have been having mammograms, ultrasounds and aspirations for past 15 years. I have almost decided to have BM and reconstruction but I am feeling really fearful so anyone who has been through this recently and has some advice it would be helpful thank you

Hi @Leahh13 - I had a double mastectomy into expanders in April. I was fortunate that I was able to choose to schedule my surgery in the school holidays at the end of Term 1 so that I could be back at work (at school) for the start of Term 2. I was in hospital for 9 days and back at work as scheduled. I was driving two weeks after surgery. The surgery experience was totally fine. I was very worried about going under anesthetic as I hadn’t had great experiences in the past but my anesthetist was amazing and it was honestly terrific! Woke up feeling great. The pain was definitely manageable - I had use of the self-administered intravenous pain management drug for 48 hours and that was awesome. After that it was panadeine forte for a few days. I ended up going home with two of my original four drains. That was really annoying but I knew it was important that they stay in while I was still draining fluid consistently. I went to work with the drains - ended up naming the last one ‘Connie’ because she was consistently by my side! Honestly couldn’t wait to get rid of her! It was about 4 weeks after the op that I finally got that last drain out and it’s really now just a dim memory. There was no pain associated with my drains at all. I have ‘air’ expanders as opposed to the traditional saline filled. They’re great - I fill them myself with a remote control device. I had them at my desired size in about two weeks and now just top them up now and then as they can deflate very slightly over time - happy to give you more info about them any time. I have photos too. They were definitely uncomfortable at the beginning - cannot lie. And I still feel them there but you get used to it. They are hard to the touch and sort of feel like a a bicycle tyre strapped to your ribs - or as someone once described it on this forum so well - like a handbag strapped to your chest. It’s definitely a weird feeling but you do get used to it and it’s no longer painful at all. I won’t be going down the recon path until next year, after my body has decided how it will tolerate and recover from radiation. Hope this has helped a bit - hit me up with any questions any time. All the best xxxxx

Hi @Leahh13. I think I understand how you feel a little. I am meeting my surgeon at lunch time today. I'm telling him today that I want double mastectomy immediate reconstruction. I decided yesterday and I slept through last night for the first time in weeks so I know it is the right decision for me even through I'm scared. I love my breasts, but I don't want this hanging over my head for the coming years, the past month has been hell. I was diagnosed last month after my first ever mammogram. I'm 42. No family history, don't smoke, fit and healthy, breastfed both kids and had them in my 20s (all these are supposed to reduce our odds of getting BC??) Have intermediate DCIS in left. MRI has shown two more suspicious areas in same breast and one in the right breast. My breasts are very dense. They want to biopsy all these before deciding which procedure. I am only a B cup and the surgeon has already said that one spot they can remove, multiple they must take the breast. I don't like the odds of the other spots becoming something down the track even if they are given the clear this time. I can't even imagine what other people on this forum are going through and have already been through. Mine seems minimal in comparison.Interesting to hear about the air expanders @Eastmum - I will definitely add that to my long list of questions.I was hoping someone can help me connect with the Choose Breast Reconstruction Group. I have asked to join but haven't heard anything.

hi Leah, I have bilateral with no reconstruction nearly 6yrs ago. heres the link to choosing breast reconstruction group http://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction

Hi @Leahh13,I have just checked and you are a member of choosing breast recon. You were signed up yesterday. We are a group of volunteer admins but will usually get to your request within 24hrs. Here is the link again to the grouphttps://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstructionIf you can’t access it, make sure you are logged in to the network first and if you are and still can’t access it please give @Giovanna_BCNA or @Marianne_BCNA a call. I am running out the door to my paid job, but will check in with you later tonight when I am home. Hugs. Paula xxx

Hi Leah. Yes, it sounds as if you might want to post this question in the Choosing Breast Reconstruction group. Have you joined it? If so, tap the hamburger menu at the right at the top of the page, select Groups, and then the recon one and start a new discussion there.For what it's worth, two and a half months ago I had a bilateral mastectomy and reconstruction. It's early days yet, and while there is sadness in losing such a delightful erogenous zone, I have no regrets so far. I never have to worry about having a mammogram again, no scanxiety for me. It's such a relief. This disease took my sister, and had a crack at my mum as well, though she lived to tell the tale. That I have reduced my chances of having it again to 1 - 2% is deeply, deeply reassuring.I had a DIEP recon and while my foobs aren't perfect, and it's been a hard experience, I'm loving having warm mounds of my own flesh on my chest and being a bit smaller. Not to mention my newly flat stomach!Is there something in particular that's worrying you? Or is it more general? Either way, I hope this helps. Having your boobs off is sad, but if they're trying to kill you... As my mother likes to say, 'better an empty house than a bad tenant'. K xox

Decision to have bilateral mastectomy

17 Replies

primek
Member
7 years ago
I had a bilateral with immediate reconstruction with tissue expanders. My story is in the reconstruction group under implant reconstruction.
kmakm
Member
7 years ago
All very understandable. I was nervous about the length of my surgery, but you know what, you go to sleep and then you wake up and it's done.

There's not normally too much pain involved with a mastectomy operation, and while the drains can be uncomfortable, for me the most difficult thing about them was when they come out! Some people barely feel it, but if you're worried, ask for some pain relief half an hour before the nurse takes them out.

I can't help you about the expanders as I didn't have them. I'm sure someone will jump on shortly to help you out. K xox
Leah13
Member
7 years ago
Thank you all I am concerned about the fear of the surgery, the drains and the expanders and how I can recover quickly as just started new job
Twiggyjumps
Member
7 years ago
I had bilateral mastectomy with diep flap. Wouldn’t do the diep flap if I knew it felt strange all the time and I’ve developed a pouch (could be herniated) that I’m holding if I don’t wear anything supportive. Not painful in any way just to tight and bulging. I’m a size 10/12 in jeans. Surgeon said give it a year and he’d repair it with mesh or sooner if I wanted. Boobs are great. Exactly as they were as I had nipple and skin sparing so it was incision under the breast as an envelope and the breast tissue removed. Skin paddles were transferred or made from my diep flap and to grow vessels etc. The paddles were removed 4 months later with a 50ml of Lipo added from each sides of my waist and I just have a single scar under the width of each breast. Bit longer than implants. Amazing technology! Slight feeling of sensation but not in the nipples. They work and look fine. (Says hubby! Lol)
SoldierCrab
Member
7 years ago
hi Leah,
I have bilateral with no reconstruction nearly 6yrs ago.

heres the link to choosing breast reconstruction group http://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction
kmakm
Member
7 years ago
Hi Leah. Yes, it sounds as if you might want to post this question in the Choosing Breast Reconstruction group. Have you joined it? If so, tap the hamburger menu at the right at the top of the page, select Groups, and then the recon one and start a new discussion there.

For what it's worth, two and a half months ago I had a bilateral mastectomy and reconstruction. It's early days yet, and while there is sadness in losing such a delightful erogenous zone, I have no regrets so far. I never have to worry about having a mammogram again, no scanxiety for me. It's such a relief. This disease took my sister, and had a crack at my mum as well, though she lived to tell the tale. That I have reduced my chances of having it again to 1 - 2% is deeply, deeply reassuring.

I had a DIEP recon and while my foobs aren't perfect, and it's been a hard experience, I'm loving having warm mounds of my own flesh on my chest and being a bit smaller. Not to mention my newly flat stomach!

Is there something in particular that's worrying you? Or is it more general? Either way, I hope this helps. Having your boobs off is sad, but if they're trying to kill you... As my mother likes to say, 'better an empty house than a bad tenant'. K xox
Leah13
Member
7 years ago
I think I have posted in the wrong forum help!!

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Decision to have bilateral mastectomy

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