Breast cancer

Hi Henbury 

I am so sorry you are facing breast cancer again after all these years and are now facing a mastectomy. I am one of the Community Champions on this forum and would like to give you a warm welcome. It’s a great community where everyone knows what it’s like to be diagnosed and facing an uncertain path.

There have been huge developments in breast cancer treatment over the 32 years since your last experience, both in the availability of newer drugs and more precise treatments. If you click where it says cancer information and support at the top of the page (if you are using a phone you will need to turn it round to landscape to see it), there’s a huge amount of information there. Information on treatments. Questions to ask, etc. 

I haven’t faced a mastectomy myself but hopefully someone who has will come along with some advice. Wishing you all the best. 

Hi Henbury sorry you are facing it again after all these years. Time has moved on and you never know what they may be able to offer you, if you are thinking of some  form of  reconstruction. Or maybe just going flat although I must admit I am struggling with this decision atm. 

I had a recurrence last year after 22 years. First time round I had mastectomy and ld  reconstruction with implant, no radiotherapy.  This time i had WLE with implant replacement and radiotherapy so Im sort of the opposite to you. Although now, a year on the 15 sessions of radiotherapy has ruined my previous recon and the new replacement implant so I'm now looking at full mastectomy of reconstruction or a new  diep reconstruction without implant. I have time to decide as I'm waiting for a plastics appointment. 

Im sure there will be lots of reassuring posts to follow and ask away for any support on here or provided by your team. Your breastcare nurse will be a great help Im sure. Xxx

Hi susz thanks for your quick reply. Like me you went.many years and it sort of lulls you into a false sense of security . I wanted implants a few years ago cos my breasts were uneven but couldn't have implant cos of the high levels of radiotherapy  I had.

I'm not going forward reconstruction I've been so uneven for so long that im used to it

It must be a difficult dilemma  for you

I'm just worried sick about recovery from mastectomy 

Let's keep in touch

I dont have date yet 

Thank you for signposting.me to resources i am starting to read through them 

 I really want to chat with someone who has recently undergone mastectomy  with no reconstruction 

 I need to feel reassured that it's not as frightening as it sounds 

I will just tag in Silverberg  who is a regular poster on the site. I am fairly sure she has had a double mastectomy without reconstruction and may be able to advise what it’s like. 

Its a real dilemma because I've had a really good reconstruction all these years I sort of dont want to loose it. Im 68 now though for such huge surgery and I keep thinking Im too old to be bothered I still feel young though ! 

Feel like I dodged mastectomy for 22 years and maybe its time to accept it. I would accept more willingly if it was both I think. 

I hope you get your date soon. The waiting is so hard throughout this whole journey. Xx

Is someone talking about me?

I've had BC three times. This time round I wanted a double mx because I wasn't doing it four times. If you read my profile you'll see they were initially not happy to remove a healthy breast but my Oncologist, a woman I'd love to go to the pub with, but would hate to meet down a dark alley, persuaded the surgeons that would be best. 

I'm boobless and go flat. I am too fat to have a reconstruction and I'd never keep two prosthetics under control. I breezed through chemo, surgery wasn't as easy but it is very doable. Nobody bothers about me being flat and with the right choice of tops etc I doubt many notice. When my daughter was explaining it to my 9 year old granddaughter the child said, " Grandma will look like me but with no nipples. " To be honest it is as good a description as any. If you check out Some of the apps there are lots of photos of flat ladies. Mine is still rather raw looking and I'd like under my arms tidying but it is what it is. 

As it happens the healthy breast had pre cancer cells in it anyway. My main issue has been a seroma caused by a full node clearance but I guess you've had one of those already. I had one first time round because that's what they did back then.

Now I've washing to bring in from the line, which is probably the hardest thing to do and I'm about 6 months down the line. OH still does the duvet cover of I smile nicely.

Sorry you find yourself with this choice but at least it is one we can make these days.

You sound so upbeat

 When did you have your double mx?

 32 years ago I did have some nodes removed and they still bother me sometimes the tightness under my arm.

 Don't know  what they are doing about nodes yet. I hope they leave them alone

A couple of questions 

How did you cope with drains at home?

 Dud you have lanyard or buy a breast pillow?

 How did you find sleepi ng at a 45° angle

Should have seen me yesterday I was a soggy ball of tissue. That was yesterday and I blame the anastrozol. 

I was kept in for the first 24 hours. I now know why Florence Nightingale went to the Crimea. Unfortunately she missed the nurses on that ward over night!!! I made myself some little bags I pinned to my jamas. When I got home I put twisted wool loops on so I could hang them round my neck. I wrote down the volume of fluid then poured it down the loo. They have measures in the side. Youll remember when you see them. The nurses show you how to do it and it's not an exact process.

Karen sent me a heart shaped pillow. But I made my own for the car and the seat belt out of an old pillow and the old cot sheets, grandchildren not children.

I bought a fancy pillow that came in two pieces from the people who deliver everything. I still use the triangle block reading or watching TV in bed. It wasn't expensive. I slept on my back for 51/2 months. I've just gone back to sleeping on my side. It takes some getting used to but you can always catch up with a man's nap.I

I can still get completely wiped out at times but I did 5 months chemo and still on immunotherapy.

I'm 69. This week I've had acupuncture a facial and a massage. Tomorrow I'm going to Aqua fit which I missed so much when I had my Pic c line in.

The hospital sent me home with a little bag for the drain. I was really worried about it being day surgery this time and having to empty it myself but like Silverberg said they show you how to do it and actually its not too bad. 

The first time I had 2 in and was in hospital for 7 days so they were removed before I came home. 

This time because I was naughty and did too much after day surgery, I accidentally pulled mine out after 3 days! So be careful not to do too much! 

I had a small pillow for under my arm which helped. The BCN said to tap the  nerve pain down my under arm gently rather than rub or massage to begin with. I invested in a V pillow which helped with laying on my back. 

Hope all goes well for you.