Ho Folks - I have a date for 19th Oct for MX and recon . full node clearance. This might change as seeing another surgeon on Fri in another hosp. I apparently can then choose where to go?? Politics i think… I have just finished 6 rounds of 3 fec and 3 tax. I, as probably a lot of ladies thought just get through the chemo and u will be fine, however now getting apprehensive , i dont’t want it !! However its a no brainer in our case !!!
Lorna
Totally agree Lorna, my logical and rational side knows there is no other option but I DON’T want it at all. There is a very high risk of me getting off the trolley bed and running away before they get me into theatre. I used the ostrich approach to surgery all the way through my chemo hoping it would go away but it hasn’t and I’m still not dealing with it very well if at all.
Hi All,
Good luck for all those facing surgery over the next few weeks. I had a mx with full clearance in March, with no immediate recon. I don’t post much these days, as I am trying to get on with ‘normal’ life! BUT I know when I was facing surgery, our little group was really helped by the calming words from a few women who had been through it all. In some ways, it doesn’t help at all; you know logically that other women have been through it, and in some ways, you don’t care! We all have to take that first look at our reshaped bodies when we come round from the anaesthetic, and no amount of reassurance can help with that. I had my chemo up front, and I had been told that I needed a mx from the start, but it is still a shock.
So, that said, this may not help! But you CAN do it, you WILL get through it. It is amazing what becomes ‘normal,’ after a while. Comfortable bras can be a bit of an issue, especially if you are going on to have rads. M&S have some good, cheap cotton ones. Get a back size that is slightly bigger than you need, as you will be a bit swollen to begin with. Little stretchy vests are handy too- and you can ask for a ‘softie’ to wear immediately if you are not having recon. My remaining breast is quite large, and I found that quite comforting, to be ‘evened’ up a bit, especially with the stream of visitors, all with eyes resting at chest level!
I am hoping to have recon in the next few months. I was DREADING the mx. I am very vain, love my clothes and make-up, but have managed! My scar has healed really well, and although my arm is stiff, my movement has returned to virtually as it was before. Oh, and one last thing, those exercises are a PAIN, but domthem religiously, it really does pay off in the following weeks.
As I said, I don’t come onto the forum much these days- but if anyone wants to PM me, please do. Good luck everyone, and lots of gentle hugs,
Tracey
Thank you TSR it does and it doesn’t help in a strange kind of way as you say BUT it is good to know that life goes on and you are leading a ‘normal’ life, I can’t remember what normal life was like now.
I think it is all the eyes resting at chest level which worries me most even though I’m having an immediate recon and what I’m going to think of it. However good a job they make of the recon it’s still not my breast. That’s what I can’t get my head around.
Thanks Tracey.
Starting my countdown. 3 weeks from today. Jealous of you ladies having yours soon - just want to get it over and done with now. Also hate the thought of not having any chemo or anything to stop the spread and knowing it’s still in there…! My boob constantly hurts and it’s just a constant reminder of the gremlins brooding away inside. Have an MRI tomorrow to see if there is any shrinkage as it is very difficult to feel my lumps even though one of them is huge!
Please let us know the good as well as the bad!
Just out of interest - how long has everyone been told they’ll be staying in? I’m having a double mastectomy and have been told I’ll only be in for 1 night. I’m in hospital as I type having my Herceptin and a lady I met here had a double mastectomy and stayed in for a week (not due to complications - was told from the start she’d be in for a week).
Anything we need to buy in advance? All I have on my list so far are button-front pyjamas.
Ninja - it’s been such an awful shock for you. I know that the chemo-thing didn’t work out as planned - but it makes me cross when oncs/surgeons candycoat the situation at the beginning which it seems like so many women on here have experienced. I was told neo-adjuvent chemo to shrink the lump and have lumpectomy. Probably wouldn’t need chemo - just rads, so fertility wouldn’t be affected. At this point my surgeon KNEW there were 3 lumps and that my lymph nodes were affected, but left it until I saw my onc until I found all of that out. Suddenly was facing mastectomy and chemo (and rads and Herceptin and Tamoxifen etc). I am devestated over the probability of being left infertile, however, I wasn’t nearly as upset as you about the mastectomy (and was told a week or so later rather than months later!) as I’d already been thinking about the bilateral mastectomy and as I was having to have one anyway it made the decision so much easier - symmetry and less worry of a new primary/recurrence. If I was facing a lumpectomy only it would have been a much more difficult decision as I LOVE my boobs (well, a little less in love now seeing as leftie has put me through all this) - so it would have been a tough decision between high risk of recurrence and new primary and keeping my luvvly jubblies!!
xx
I love my boobies, too! Though the naughty one does ache a wee bit and I’ve been thinking for several weeks that one quick chop and the ache will be gone.
I think I’d rather be flat than be really lop-sided. I can just imagine hospital visitors staring at the very obvious gap in my chest :o(
I’m staying in 5 days for radical Mx with muscle removal and all nodes removed up towards neck area. Maybe cos it’s radical/extensive, maybe cos of all my other health problems.
I’m getting my list of essentials next Friday. As I only have transport at the weekends, that doesn’t give me much time to sort out anything. I got a button-front stretchy cotton nightie at TK Maxx - thought it would be easier than pulling jimmy bottoms up and down with a stiff arm.
Blinkin’ port has to be re-sited, too. And I’m right-handed and my right arm will be the knackered one.
Yeah - that’s cr*p. My clearance is on my left side and I’m right-handed so that’s at least one thing that’s worked in my favour! However, I can’t stand the thought of having to be all pathetic with my left arm! I’m definitely a mucker-inner and was thinking yesterday as I was lugging around loads of boxes that I wont be able to do that anymore - I’ll have to sit patetically and girlish on the sidelines directing my husband. And will have to carry shopping bags one-by-one rather than carrying so many that my arm is about to fall out of the socket.
Nightie’s are a good idea. I saw some nice oversized pyjama top type ones (that come down to your knees). Maybe I’ll get some of those instead…
Hi all
I have been told I will be in hospital for a week having double mx and full node clearance. I’m not looking forward to not having full use of arms either. Have just got back to playing my harp after chemo induced agony in nails and now won’t be able to play it once again for a while and that makes me sad, but I will still be able to bash my piano. I just keep thinking that I am near the end now and by Christmas I should be all finished. Some of you mentioned not being told the whole story at the beginning. In my case I was told it was a small tumour and would not have spread to lymph nodes so i would need WLE and rads, no chemo. Well it had spread so have had WLE and chemo, now having double mx and rads I asked for double mx at the beginning due to 9/10 women with BC in family all under age 45 and he wouldn’t do it so now having it done at the end as onc asked why I wasn’t considering it. I asked him to contact surgeon and ask him! Just hope it will stop me getting new primary and that the chemo has done it’s job. I will miss my boobs too and realised only today that I will need new swimming cossie etc. Not having recon as have had enough at the mo. Sorry to ramble on!
Don’t know how I’m going to manage with shopping! Will have to order online I think.
Hope everyone is okay.
Lots of love Rachel x
I’ve been told I will be in hospital for 7 nights and in the high dependency unit for 2 but I’m having immediate recon too. The thought of not being able to use my right arm for weeks or months is not appealing at all. I just wish someone would knock me out and I could wake up a few months later and it would all be done, over with and ok.
Im slightly behind you, but I’m on what seems like a very fast conveyor towards a left sided simple mx with DIEP. I was diagnosed with widespread high grade nuclear dcis on 1 Sept and have had lots of tests since then, so far no invasive cancer found, and just a SLNB to come. All being well I’m scheduled for the big op at approx the end of october. Love to be a buddy to you…and make the most of your experiences…
Hi Nonsuch, I know what you mean about the fast conveyor, I feel like shouting stop I want to get off. I will keep you fully informed as I go 
Well I spoke to my PS again today and it seems my surgery may still get cancelled if my white blood cells don’t recover enough. They are currently at 3.2 and need to be over 4. So fingers tightly crossed please I don’t want this surgery but neither do I want it to be cancelled.
Hi everyone hope you dont mind but have been reading all your thoughts on mx , well came home yesterday from having double mastectomy with full node clearence and was in for a week .The only way they let you home early is if your drains are less than 40cm so ladys dont forget your bottle bags as you will need them to carry your drain bottles . Never realy felt pain as the nurses are very good making sure you have no pain but do have to say lots of discomfort . If any one has anything they would like to ask me , please do
,but still early days for me as go back tuesday for staples out . josie1
Hi Josie
I’m having same op as you next Thursday and have also been told I will be in a week. Good to hear no pain. I just wondered whether you are able to get the wounds wet ie have a shower because after WLE I couldn’t but have been told they will be dissovable stitches this time. Glad you’re okay.
L:ove Rachel x
Rach - I was told yesterday, no shower, just a shallow bath until dressing removed in 10 days. No wettings. All my internal stitches are going to be dissolvable in layers, then one long running stitch subcutaneously and finally steristrips.
I can’t have Tegaderm, I’m allergic to it, so maybe if you have Tegaderm you can have a careful shower.
Thanks Ninja
As long as I can have a bath I’ll be fine. I’m really scared now and worried i will be emotional wreck afterwards. Even though I know it’s right for me doesn’t make it any easier.
Hugs to all xx
Hello Nonsuch and thanks Josie!
Right! Adding wet wipes to my shopping list…
Anyone else not having drains? I’m getting a bit worried! My surgeon says 1 or 2 nights for a double mastectomy, full clearance and (hopefully - will find out next week) expanders put in. And no drains. Anyone else in for a short amount of time and not having drains…?? I wonder what happens to whatever stuff comes out of the drains if you don’t have drains…?? (Squeam!! Am so squeamish!!).
Wet wipes-brill idea! Is there a luggage restriction I wonder???
Button down front pjs
Dressing gown
slippers
toiletries
wet wipes
ear plugs
i pod
books
magazines
crossword book
school Christmas play to write
pens
hats
bottle of squash
mobile phone
bags for drains (someone suggested this and sounds like a plan to me)
Hello I am new here, so this is my first post.
I had a mastectomy and DIEP on 5th September at the Marsden. Have been home for two weeks now and am doing fine. Biggest problem is boredom.
Make the most of your time in hospital - I was in for 5 days after the day of surgery, and felt it was not too long. Slept a lot of the time, and had very littly p ain. Just discomfort, but once you get the drains and catheter out you start to feel much better. Used very little morphine, and kept well away from Tramadol . Paracetamol was OK.
Can almost stand up straight now - have seroma on breast and stomach which is uncomfortable but seems to be slowly decreasing in size.
You wi ll I am sure be absolutely fine, and if like me have total confidence in your surgeons, then just let them get on with the job. Good luck.
Jx
RE “Nightwear” I dont usually wear anything in bed, so thought I could just breeze into M&S and take my pick of front opening PJs. Ha not so. All I found was a night shirt which was long sleeved and brushed cotton.
Remember that you will be observed constantly so need to be able to present an unclothed arm for BP’s etc.
In the end I just used the hospital gowns. It aint a fashion parade after all, and I was beyond caring how I looked (awful) anyway.
Having a shower on the third day did make a huge difference though.
Jx