breast reconstruction and refused help

hi i had a double mastectomy in april i packed up smoking in march when i found out and they refused a reconstruction straight away i took it on board as i just packed up smoking then i waited till the end of august and west suffolk refused again saying im obese and i have to be 30 or under bmi. i broke down in tears i was 32.29 bmi and i am on thyroxine with under-active thyroid and its now October my bmi of 31.9 and struggling to lose weight im exerciseing like mad and going to slimming world. i haven’t gone back to work i work in a factory im depressed and i wont let my husband near me so there pressure there too im normally a strong person never felt like this before and i feel guilty feeling like this i cannot get on with the false ones has any-one else been refused like this?

Hi there

Im really sorry to hear of your problems. Which of the factors seem to be most problematic for your surgical team? If it’s the BMI, then I dont understand how they set the criteria. I was assessed in Feb this year for a tram flap when I was 15.10 and he said he was happy to go ahead. Im now 14. 4 with a BMI of 32-still over the limit.
As for the smoking, Im lucky that Ive never been a smoker-I wouldnt have the will power to give up, so really well done to you.
My surgeon said the main criteria for surgery were:

No previous stomach surgery
Non smoker/given up for a decent period

I have to say that I went to an excellent BCC event about reconstruction. One of the pictures we were shown was the awful results of a TRAM op where the patient kept her smoking secret. It was really nasty and the surgeon said it took many many ops to repair.

I know you must be really fed up with the situation, but you have done brilliantly losing weight already, so hold onto the positives.
Why dont you speak to your GP and see if he can help with the thyroid problem in case theres different methods to tackle it which wont be so hard on your weight.Have you researched into other surgeons to see if they are more flexible with the BMI.
Take care and dont give up.

thank you i do hope i get a reconstruction so i can get back on track with my life and marriage thanks for your support xxx

So sorry to hear of your problem I cant help with the reconstruction havent had it done but agree with Everton Babe to see what other surgeons say, I take thyroxin for my underactive thyroid and losing weight is not easy speak to your doctor and explain the situation he may be able to help, hope all goes well for you,
Celia.x

im in similar position, dont smoke but overweight, not declaring what but bmi far too high, im at the place where ive had expander to stretch the skin and then want double tram/diep op, ouch. I have been told that will do it if i loose weight but they havent specified how much however did suggest 32bmi and said that the weigh issue is the main factor way over smoking etc, so i would have thought your weight was in a good place now to proceed,

Hope you get some more support and a way forward x

HI, I also am at West Suffolk, and awaiting a re balance op for breast assymatry after a WLE in 2008 and then further surgery for lymph node 3 weeks after, followed b Chemo and Rads, seems like you saw the same PS as me, as I was told that I would not be considered if I went over 30BMI, at the moment I am 28 but being exceptionally careful. But still trying to loose the 2 stone put on during Chemo, and the tablets I am now taking do not help. I would suggest you go to see your doctor, I am taking that step next as I have to see the PS on 5th Nov to discuss what type of surgery I want and its being completed just after christmas, great! thats the time we all put on a few pounds and I am goin g to see my son in Bahrain!. Anyway don’t give up hope the BCN at West Suffolk are really great and I am sure they will help in anyeay possible.
Best of luck x

hi
I just saw your post and its what is happening to me at the moment.
Did you find another surgeon who agreed to do the op?
I have had lumpectomy at addenbrookes hospital on 9th Nov and when I went back for results was told I needed double mastectomy with immediate reconstruction due to tumour being much bigger than anticipated and close to margins and precancerous cells all around in there. Saw the plastic surgeon a week later who told me I had to get my BMI to 35 (from 37) in 3 weeks when he would book surgery. I lost 10lb in 3 weeks with slimming world, and went back on Monday this week to be told he had made a mistake - my BMI needs to be 33 (another stone), I think I’ve been crying virtually since then! I didnt have a problem with body image before this - now I feel so huge. I am a dress size 18 - because my boobs are g cups - and once they are removed I know I will have lost that stone, but that is not being taken into consideration! I’m continuing with slimming world also because I do want to lose weight.
I have asked to be referred elsewhere (going to Broomfield in Chelmsford tomorrow) - I dont know if its a national policy - about the BMI - but I feel that Addenbrookes have let me down, wasted precious time, these boobs need to come off now not when I’ve lost weight, and they mis-advised me from the start. (my BMI wasnt in question when I was told I needed mastectomy)
Sorry to rave and rant - I’m just so disopointed if I cant have the reconstruction at the same time - I might not like my G cups but cant imagine not having any at all.
My hubby is supportive, but I know I will be the same as you Shazzy and wont let him near me without some kind of boobs!

  • I hope you found someone to help Shazzey.
    Let me know how its going
    xx Nicola xx

Firehorse66…I am, thinking you and ,e have the same PS!
I saw him yesterday at Hinchingbrook and was told that I need toi loose 4stone to get my breast recon reduced…he made it 4 cups sizes larger than ‘good’ boob! Op in 2007, mastectomy and immediate TRAM recon! I should think myself lucky as the PCT goalpost were changed, my BMI

sorry, cut my message in half!
my BMI (he told me on Tuesday was 41!!) He then was told by his secretary that it was 39!
I am angry and frustrated…I felt belittled and humiliated. I am only 40, had the op in 2007, I think it is time they sorted out the ‘breast form’, gave me a nipple etc…
IT IS .
JUST A FINANCIAL COP OUT!!!
I am outraged.
Let me know how you get on in CHelmsford…GOOD LUCK!! X

Hi,

Shazzey,
I understand where you’re coming from and how crappy it makes you feel!

I was diagnosed BC 1st April(ironically) last year. After loads of tests & Biopsies I was told my only option was a Mastectomy. I was 43yrs of age and was absolutely DEVASTATED!

The only thing that gave me some comform was the fact that I was offered immed recons. My Sister asked my consultant at that time if my weight was in issue, to be told, “Not at all, go home & build yourself up”).

However I waited and waited for an appointment with the Plastic Surgeon. I never received one so I called them up. They said they weren’t even giving me an appointment due to my BMI, which was 36 and had to be 32 or under (when exactly were they going to tell me this?).

At the time I was on Mirtazipine and am now also on Tamoxifen, which both cause weight gain!

I became very depressed but eventually joined my local gym & started going there every day.

1yr on & I’ve lost just over 2 stone & have got my BMI down to 32. I can honestly say it’s not been easy but it is achievable!

I was told the guidelines have changed over the last few year due to the amount of people needing reconstruction but I’m sure if we were paying privately these rules would not apply, it makes me so ANGRY!

What also makes me angry is other people saying, “don’t put yourself through it, you look great”. They just don’t realise how unbalanced (I’m 38G) and unfeminine it feels!!

I do hope you all get the results you’re looking for soon. Just don’t ever give up fighting and keep believing in yourselves.

Love
Maureen x

hi
Can I ask if you are still on mirtazapine? I am on them at the moment and have gained lots of weight. I am also near the end of chemo, started in sept, and find exercise hard due to fatigue. I am counting the days til end of may when perhaps my energy levels will rise. Before dx, last may, I was not on mirtazapine and shed 2 stone. I have piled it all back on and then some. Not eating sensibly has done some of the damage I feel sure. I am thinking of weaning myself of them so I can lose some weight. I am hoping for a mx, and reconstruction is not on the table for me. Sorry to hijack the thread but not many folks seem to be on mirtazapine
x sarah

Hi Sarah,

Have e-mailed you direct.

Maureen x

Hi Shazzey,
So sorry to hear you have had such a rough ride! I put on loads of weight when i started tamoxifen. I found the intemitant diet on the genasis web site helped me to loose weight. You only follow it two days a week so it helps to be “good” the rest of the time. I think most of us go through a time where we can’t stand intimate contact I certainly did and still do 18 months post mastectomy. My husband has been a star but i still could not stand him touching me especially in areas that I have lost sensation.
Good luck and keep badgering the surgeons ask for a seccond opinion if you are not happy.
Luv n hugs
Jano xx

Hi Shazzey,

I feel so sorry for you, but I have to say WELL DONE for giving up smoking, that’s really brilliant!

As for the weight-loss, please go to your GP for help as they might be able to adjust the thyroxine dose or help in other ways. Do you need any more treatment?

I’ve had bilateral mx myself a couple of months ago, and no recon. I would like to say that while I understand how you’re feeling, it might be good to step back a bit and try to relax about it all. This is a HUGE thing for you to deal with sweetie, and you’re putting so much pressure on yourself on top of the pressure you’re already under.

It’s fantastic that you’re doing the exercise and trying to lose weight - all this is helping you to become more healthy than you were before your bc. I worry that you’re so focussed on the recon that you’ve forgotten about yourself and why you had to lose your breasts.

The BMI thing is horrible, but I guess there’s a reason for it - how will you feel if the recon fails? The fitter you are before you have the surgery, the better your chances. You still have to come to terms with the mx for this reason.

I hope you understand why I’m saying this, please go to your GP and look on this whole thing as a long process, slow and steady. I wish you lots of luck with it, and am sending you love. And you’re doing BRILLIANTLY hunny.

Hugs, Lynne xx

hi everyone
just to update you since my previous post, I had mastectomy with immediate recon at Broomfield - was told they had no problem with my BMI of 35. Op was a success - and they also felt that single mastectomy was better option than the bilateral I had been advised by Addenbrookes. I am now awaiting reduction of the remaining breast to even me up - my new “boob” is a 36 C- D cup and my other a G. I am seeing the surgeon next week as he promised to sort the other one out as soon as everything had settled with the reconstruction, so I am hoping for surgery within the next month.

Becks - do you think you could get a referal from your GP to Broomfield - you should be able to go anywhere you choose nowadays, I know they said they were having referrals from as far away as Yorkshire when I had the mastectomy. They are apparently one of the biggest breast surgery units in the country.
It is terrible that the surgeons made your new boob so big and now wont put it right!

Hope it all gets sorted soon

love nicola xx