Recently Diagnosed. Having Masectomy any advice Gratefully received

I have recently been diagnosed with stage 2 invasive lobular breast cancer, I had no symptoms just picked up on routine 3 year mammogram screening. I have seen consultant twice and have third appointment on 5th Jan, I have finally decided after many tears, black days and a lot of soul searching to go for double masectomy and reconstruction, I no its radical and I have lesser options available to me, but I have decided to give myself the best chance of it never coming back, its not a guarantee it won’t I know that. I have HH cup and small frame. My surgery is scheduled for 12th Jan, any advice anyone of you lovely people would be willing to share would be gratefully received by one shell shocked lady. Consultant says I will need radiotherapy and chemo is dependent on lymph node results.

Hi blossom, I have ended up having both breasts removed after a right mastectomy and left lumpectomy but extensive DCIS meant my only real option was to lose both. I had the second op on Dec 3rd and I can honestly say I don’t regret it. I haven’t had reconstruction but plan to in the future after treatment. I have found both ops bearable and have had very little pain afterwards. The drains were a nuisance hut they are not in for long. The most painful has been my armpit where thay took out lymph nodes but four weeks on that is improving. I do wear softies and have got my prosthesis as I don’t feel confident going out flat! Nobody notices and I don’t feel any different when I have them in. I am glad on some ways that I had no choice because I haven’t got to worry about it coming back in my other breast. I just worry about it spreading elsewhere! It is chemo that I dread most and that starts in January. 

Everyone is different but I have found the physical and psychological impact of a double mx less difficult then I thought it would be. 

good luck Claire xxxx

Hi Blossom, I was diagnosed with the same as you at a similar time through routine breast screening (I’m 52) I have to opposite issue boob size to you - I’m an A cup and had a mastectomy and silicone reconstruction because a lumpectomy would have taken most of it away anyway! That made that decision easy for me and knowing it can’t come back on my left hand side is comforting.
I’m nearly 4 weeks post surgery and starting chemo towards the end of Jan which will be followed by radiotherapy and then 7-10 years of hormone tablets.
This forum is the best place to be for advice and support - wishing you loads of good luck for the journey ahead of you
Xxx

Haha! Love the reason for your name!! I’d probably be called Gordon’s!!!
I just had the one removed (just!!) and wasn’t given to option for both although I’m sure if it had been mentioned I would have gone for it for the same reason as you!
My hospital experience was a good one (I’m in Shropshire) the staff were fantastic. I took in button front pjs but wore my hospital gown the whole time as it was way more comfortable. Be prepared to be sleeping on your back, semi upright. If you’re having both removed I imagine you will need help getting up right - ask for extra pillows if you can!
I had 3 drains in hospital and came out with one for 2 weeks. They’re more a nuisance than anything else as you have to carry them round. I used a pillowcase in hospital and a fabric fold up shopping bag at home. If you look at the thread 'what to take into hospital, someone mentions a website where they sell bags for drains and profits go to charity (drain dollies, or something like that) if I had known I think I would have got one.
Can’t think of anything else just now, but I’ll let you know if I do! Xxx

Hi Blossomhill,

I was diagnosed with invasive lobular in my left breast in November 2013. I wanted to have a double mastectomy with immediate reconstruction, but my BCN and surgical team managed to convince me that a lumpectomy would be better. To cut a long story short, I had a WLE followed by chemo and rads. However, I just couldn’t get my head round the fact that I’d not had a bilateral mastectomy, so on the 3rd of December I elected to have both breasts removed with immediate DIEP reconstruction. The surgery was long (16 hrs) and I ended up in hospital for 11 days, but I’m so glad that I made the choice. I am experiencing a bit of problems with the skin on my left side due to having had rads, but I’m slowly healing up. I really wish that I’d stuck to my guns when first diagnosed, so my advice to you would be to go ahead and get it done now. Hope you have minimal side effects from the surgery and I wish you a speedy recovery. Take care, Ann X 

I was looking on this website too prior to my surgery. I took front fastening jammies with me, but try to make sure they’re not too heavy. Gets very warm in hospital. I bought some cheap ones from asda and shortened the sleeves using wonder web. Quite happy to chuck them in the bin once I got home! Also support knickers. Again I bought cheap ones from tesco. Couldn’t use them while my drains were in, but they were an absolute godsend once the drains were out keeping dressings in place and adding support to my tummy. I took some face spray to keep my face cool, and some dry shampoo to keep my hair half way normal (didn’t let me shower for almost a week, eek!!) I also took a small hand fan to keep myself cool. Please don’t be alarmed at my marathon op. My surgeon told me that I had “funny plumbing”!!! So I was a bit of an anomaly. Think most ops are between 8 and 12 hours, so I’m sure yours will go to plan. But you really are doing the right thing by getting it all done and dusted in one go. Best of luck. I’ll be rooting for you. Ann X X X 

Sorry Blossonhill. One other thing is invest in some front fastening bras. Sports ones are best. You can discuss sizes etc with your BCN. X X 

draindollies.co.uk/collections/all

This is the website for the drain bags - hope it works!!

Hi blossom hill, I was diagnosed with this sh@t 17/12, biopsy results 24/12. I’ll be having right breast mastectomy 12/1. I’ve opted not to have reconstruction straight away as I have to have chemo & rads. It wasn’t a hard decision for me as I’m only 29 but got a 2 year old son so being around for him is something I want more than a breast. I will have recon at a later date tho. I think I’m more worried about loosing my hair! I still haven’t fully accepted what’s going on & still in shock & denial I think. I’ll be thinking of you on op day as I know I won’t be the only one going through it then.
Good luck with your journey
Paula xx

I bought my post surgery bra from Macom medical .com, code 1007 - a bit pricey but in my opinion worth every penny.

good luck x

Hi Blossom.  The ‘what to take into hospital?’ thread is on the Going Through Treatment board, but you can get straight to it here:

forum.breastcancercare.org.uk/t5/Surgery/What-to-take-into-hospital/m-p/860471#U860471

 

It’s a really helpful thread.  I read through most of it, made a list of things that I thought would be helpful and had everything I needed.  You will notice that there are huge differences between what different hospitals provide, so it might be worth a chat with your BCN to find out what to expect and to avoid unecessary expense.  Tat xx