Masectomy

Annabelle

So I am terrified, I have been booked in for a total masectomy and total axillary disection, so all lymph nodes removed under armpit.
I have been told that I cant have reconstruction as I need to finish 6 weeks daily of radio first and that radio effects the outcome of reconstruction.
I am only 37 years old. Can someone that has been through this let me know how you recovered?
I am really scared.
I have nearly completed 6 months of chemo.

melclarity

@Annabelle a big Welcome to you firstly and being terrified is something we can all identify with, together with anxious, angry and downright upset! I think from my experience these past 6yrs, its going from absolutely fine to a whirlwind of scans, surgery, diagnosis then treatment and it all happens like lightening before you have a chance to think! I was 43 my first diagnosis and but at 49 and recurrence at 47 am recovering from a single mastectomy/diep flap recon. Very different to what you are undergoing. There are lots of ladies however been through where you are and what you are about to undergo. Ive done radio, chemo multiple surgeries and I can say it is frightening but what got me through it all is looking at one thing at a time, when we try to look at the big picture we can't make sense of it and we freak!! But know this...you absolutely will get through each step, just as you have Chemo. So hang in tight, and please come and keep us updated and share, we are all here to help support in anyway we can. Big hugs Melinda xo

primek

Many many women have had this procedure but it doesn't make it any easier for you.  They can sometimes do an implant insertion and rapid expand prior to radiotherapy. It certainly has been done. If you look up @ScorpionQueen you can read about her experience of this. There would be many many more.  They can then do a changover. This is dependent though on the condition of skin and muscle after radiotherapy. Almost certainly though you could have a flap reconstruction done after where they will add new skin in and sometimes muscle to make the new breast.

Have you joined our breast reconstruction group?

http://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction

This has information and photos of members following reconstruction.

The waiting is so hard and it almost feels a relief to have the breast gone with cancer with it once it is done.

@sillysam83 You may also be able to provide some valuable support.

Take care. Kath x

nikkid

Hi @Annabelle I have had a mastectomy (but not full axillary clearance - only sentinel node biopsy). It is shocking at first but as both @melclarity  and @primek have said YOU can do this - so many of us here have  . Whilst this won't make it easier, our shared experience might help to allay some of the fears or at least help to address some of your questions.

Thinking of you

Nikki xxxx

AineG

Hi @Annabelle, I'm 44 and had a double mastectomy with full aux clearance on the left (SN only on the right) last August. I chose not to have a reconstruction - fear of the extra surgery as much as anything. I also had radio, (but not chemo).  The recovery is pretty good.  Listen to your phsyio's and do all the exercises. I was back playing footy by the end of Jan.  For me I'm now quite used to my new shape and actually getting to like it.

What is worrying you the most, the surgery and recovery or not having a recon?
Aine

Afraser

Hi there
I had a mastectomy and axillary clearance but no radiation and I chose not to have reconstruction. The surgery and recovery was really straightforward, practically no pain and mobility in my arm was good within a day or so. Be prepared that you will lose a lot of feeling in your armpit but this will gradually return over time. I had a bit of a problem with fluid (the body produces fluid to assist healing but sometimes gets a bit over excited) but usually this dissipates. Massage may help. Best wishes.

au0rei

Hi Annabelle, I had a left mastectomy and 3 nodes Sentinel Node procedure. I definitely have heard of people doing double mastectomy and axillary dissection, my friend's mum did that and she's fine today years later. You are much younger and probably recover faster. Definitely use a good physio to help you recover. Hugs xx

sillysam83

Hi @Annabelle. 

Thanks @primek for tagging me as always.  Xxx 

I had double mastectomy at 29 and axillary clearance. Then after chemo and surgeries went on to radiotherapy. I was flat chested for a while. I had diep reconstruction done and love the outcome. 

It is hard. Nothing is like quick bam its done now... it does take time. I recovered well and im a few years out now. Post mastectomy and axillery clearance do your exercises and when u get the ok from doctors start physiotherapy with a trained experienced physio in breast cancer. If u can do this it will benefit u greatly prior to and after radiotherapy. 

My other advice is if u are in the public system for reconstruction do your homework on their waiting lists for recon. Some see it as an elective surgery and can make u wait years.... u can choose any public hospital u like (i did not know this) once i chose my hospital (royal womens in melbourne) my reconstruction process was very good and quick. 

It is completely normal to be scared and terrified. Especially of the unknown and how u will recover. We are all here for you. Xxx Feel free to tag me anytime and I'll pop into bcna site for a chat. 

Sillysam83

lgray3911

Hi @annabelle I am 37 aswell and had a double mastectomy on the 9th of March and had to go back to get Level 2 node clearance on the 23rd. The mastectomy was literally painfree. When they remove the breast that means that all the nerve tissues are gone too so no feeling in the breast area which is very bizarre when you are looking at 2 scars but was a relief for me to be honest. The drain that's in there is more annoying than anything but I didn't experience any pain from that.  My arm after the node removal was sore. It's also a strange feeling because it feels quite numb but is super sensitive. The gentlest of touch sent strange nervey feelings down my arm kinda like pins and needles and kinda like what I imagine being tasered would feel like but it's manageable. I've had worse pain. My arm movement was quite limited to start but I have been plugging away doing the exercises they recommended and 3wks post op I can lift my arm straight up in the air and no pain. My armpit has no feeling though which is strange just numb shaving is scary. Don't be scared the doctors will give you lots of pain meds to help manage the pain. I was just on panadol by the time I left hospital after 4 days. I have just started my 6mths of chemo so we are doing it in reverse order!! Good luck you can do this xxxx

Annabelle

Thank you so much @melclarity @Primek @nikkid @AineG @Afraser@Afraser @sillysam83 @igray3911

Your words of encouragement have been invaluable to me. Its great to Know their are other strong women supporting and helping others.

I am glad to have this support network!!

@AineG What is worrying me is the surgery. I guess the whole thing has been hard to get my head around! But I can see I'm not the first and last that will go through this.

This whole thing is so cruel and unfair as you all know but I must say this site is Awesome!

Thanks guys xoxoxo

AineG

Hi @Annabelle  The surgery you can and will get through, I know it's daunting but take it a step at a time and you'll start to see improvements week by week.  I was certainly no super hero. I didn't even know the Irish had tear ducts until this thing happened, but I've made up for that in the first few months after diagnosis. Now I can see myself going from strength to strength and so much better in myself than before this happened.  You'll get there too.
it is cruel, unfair, a bitch, it sucks, and there is no rhyme or reason to it, but at 44 I thought to myself "I'm only half way through my life and damn it the next half will rock!!!".
Go Kid!!