help with Diep, mastectomy needed please

Hi

I really would like to hear from anyone who has been through similar, I had a mastectomy 2007 followed by chemo (couldnt have radio therapy and I had it a few years before on same breast following lumpectomy)I then had LD flap reconstruction but after many attempts at trying to save it had to have the implant removed. I had my tubes and overies removed 2010. I feel I would like to move forward so saw a PS who does the DIEP op he said I was an ideal candidate so onwards I go, I did however bring up about the other breast in light of having cancer twice and he said he would consult my breast cancer surgeon (different hosptial) On Friday saw the PS and said I would have the one breast done and felt happy with my choice. I received a copy of a letter (which he told me he had received and gave me details of) but now seeing it am not sure about my choice, I knew my original consultant said she would agree with what ever decision I made (I suppose this hospital pays) but now seeing they thought a contra lateral mastectomy and bilateral reconstruction was a good one and that the hospital who have been looking into my family history also agree I am really need help.

I am sorry to ramble, I may also book an appointment to see my breast care nurses

Sorry cant help too much but I was in similar position but due to having brca1 gene I have opted to have 2nd masectomy and have double reconstruction using diep/tram. Was a total personal decision but they supported me and also if somethign did happen they can only use the tummy once so I have opted to have both done at same time so that they may be similar. Unfortunately there was some mix up and hospital and op was cancelled but I have proceed with 2nd masectomy and due to go back in in about 6 weeks to have double diep, arrghh!

Good luck with your decisions, I think it’s a personal choice, for me I am a major worrier so having the 2nd masectomy and ovaries removed has gave me a bit of a relief in terms of worrying about a reoccurrence int he breast.

Good luck xx

Hi

Thnks for your reply which has helped.

Have you had your mastectomy yet or are you having all the procedure at once?

If I decide to have the healthy removed I will then have a double diep!! I spoke to my local breast care nurse and am now waiting for the the nurses at the hospital I will have the procedure done to ring as they specialize in DIEP.

Any way I will have at least one done!!!

I want to make the right decision and am thinking a bit more time in the operating theatre etc will save years of worrying and mamograms etc.

I would love to hear from anyone who has had a double diep

L
xx

i had one masectomy then after all the stuff went to specialist hospital 3 hours away as my local one didnt do much recon. The masectomy side i had temporary tissue expander in and then was due in last May for a double recon using tummy and 2nd masectomy at same time, they can only use your tummy once so I opted to have both done at once. The nurses gave me a tablet that they shouldnt so op was cancelled but offered me the masectomy and temporary expander on other side, took it to reduce risk and 6 weeks to go and I will be having the double diep/tram - terrifed lol!! x

Hi

I am terrified too and dont have a date!!!

Well I spoke to my local breast care nurse and she advised me to talk the nurses at the hospital doing the procedure. I left a message and am waiting to get the call back, hopefully Monday.

My mind keeps changing, as I am not a BRCA carrier but have a family history I dont know what to do once minute have the other one off and then keep it. However I am trying to weigh up both sides what I would like is the choice to be made for me but I know that wont happen. I feel I took the easier route last time having the LP flap, less time off work etc but in the end I lost my job (long story and had to get solicitors invovled) so its a big decision, I am 54 and hope to have at least another 30 + years and want to live it.

Let me know how things go with you, where are you having the op )you may have to PM me)

L

Poor you, it’s hard isnt it, i had similar decisions whether to have lump out or masectomy in the first place and wanted them to decide, this time I had had enough and didnt want it hanging over me but I had brca1 gene so easier to decide, must be hard weighing up options, once issue is that once they have used your tummy once cant use again so if you decided later to have other side off would have to be ld. On the other hand I’ve heard and seen some that they manage to match up the sides amazingly if you just have one side done.

I just got my pre-op and my stomach fell to floor, soooooo scared. Im having it done at RVI in Newcastle, how about you. Good luck with the decision and pm me if you want anything or someone to chat to. xxx

Hi

Its a funny place to be, you want it done but are scared stiff, someone told me its a bit like having a baby you forget the pain and to be honest I hve forgotten the mastectomy and the LD flap in and out!!

I hope the hospital ring tomorrow if not I will chase them, everyone I know know I am a control freak and I think that is part of my problems I dont feel in control.

When is your pre op app?

Hope to make some sort of decision within the next couple of weeks, spoke to 2 friends yesterday and both said if they were me they would go with having the other boob off

Hope you have had a good weekend

L

xx

hope you get through tomorrow, my pre-op is on 17th Feb so dieting hard and they have told me as overweight my middle will still be big, so trying to get it down a little. I suppose having two done at same time will match, well hopefully xx

Hi

Got through yesterday with a little help from a couple of glasses of wine!!!

I am waiting for the call from the breast nurses but I know they are very busy .

I am a little worried if I have the other breast op, will it take more muscle from my stomach and put me at more risk to hernia s etc as I am not sure if I have enough fat for 2 breasts (I probably have!!).But thats one of my questions to them

I wouldnt worry about your weight too much when I worry I eat more than less and I am sure after the op your stomach will look great

L

xx

Hi tin fish,

You’ve got a hard decision to make but I’m sure sharing on this forum will be helpful to you so you have the right information to make the decision that’s right for you. While you’re waiting for hospital nurses to get back to you, maybe this might help. I had a simple mx and DIEP 7 weeks ago and I hardly feel I’ve had the op now. Once you get to week four, things get so much easier and the more you can move, the easier it gets.

If you have recon using your tummy fat, there are two main types of op…
A TRAM flap uses some of your lower tum muscle to take the blood supply to your breast and the muscle part is fed up, under the skin to the breast. Tummy fat is shaped to form the breast and gets it’s blood from the muscle which has a blood supply from your tunny still. The use of the muscle is why it presents a risk of hernia…either in your lower tum area because muscle has been removed, or in the part of muscle which is taken upwards.

The other main type of tummy recon Is the DIEP flap which doesn’t use any of the tummy muscle itself, the fat is used on it’s own, a blood supply is separated from the muscle and reconnected either under your arm or in the breastbone area. The fat is shaped and put into the breast. The only impact on the tummy muscle is that there’s a sort of sheath around it, and this does get disturbed to tease out the blood supply vessels, so it gives a
Little bit of weakness initially but nothing like having the muscle itself cut. I guess if you have bilateral then they take the blood supply from two places and rejoin in two.

So if you are suitable for this op, the size of the boob they can make does depend on the amount of fat you have but doesnt weaken yut unny muscle really. To give you an idea, I was a 14/16 dress size and they have made a C/D cup for my one new boob. It’s possibly a bit bigger than I want it but swelling is still gpng down. I understand that theres a balance as good soft tummy fat is needed for the op, but not being too overweight as this puts strain on the body. The other thing is having good arteries and veins for the DIEP op so they join properly, but if your blood supply is good, then it’s a good choice!

Hi

Just spoke to a breast nurse and she is going to make another appointment for me to see the surgeon again. She understood my situation which was good but said I can be the only one to make the decision regarding the 2nd mastectomy etc, she said the two breasts may be a bit smaller but I am a D/E and size 14 so a C or D would be good. I will be having the DIEP operation as he said my blood vessels etc were v good

Its the do I or dont have the other breast removed which is my dilema and I hope to make the right one.

She is also going to arrange for a buddy who has had the same to phone me, I feel better already just speaking with her.

L

x

Wow great info there about the actuall op, I’ve learnt something so thank you.

Well like she says only you can make the decision, my BC nurse put it to me like , how attached to it are you? Are you a worrier? My main thing I always said was I wanted to elminate as much risk as possible and I am a major worrier so for me even though terrifed of hospitals it was a relief to have it off xxx

Good luck xx

Hi

I had a good day yesterday did a lot of talking and I am 95% sure of my decision. The breast nurse is makng me an appointment to see my consultant to make the final decision and she said is would be asap.

After yesterday I feel like I am like you lisa a worrier and so if I live another 30+ years (hopefully) I am 54 niw whould I be happy having a mammogram each year and each year worrying have I go it again.

I found this link on someones thread and thought you might be interested I have saved it for myself:
scribd.com/mobile/documents/54505458/download?commit=Download+Now&secret_password=

Have a good day

L

xx

That’s good that you feel a bit more certain, I’m sure whatever decision you make will be the right one for you, even though my op was totally messed up I had a huge sense of relief that I never expected having the 2nd masectomy and to be honest as there was something still there I wasnt even upset at the loss, how can you be at something that has caused you so much pain and upset, well that was my view anyhow.

Good luck with your appointment. About to check out the link now. Ta

L x

Hi Lisa

Well my specialists secretary rung me and my appointment is 21st Feb (bit longer wait than I wanted), I asked her if this would change the waiting time. She said she hadnt even been put on the waiting list as she had been waiting for the letter from my breast consultant. However my PS consultant said in January I had, so we will speak with him in Feb, I dont want my op until after June as my daughter is having her 2nd baby end of May and I want to be there to help her. My Husband is confident that I will have the op when we had discussed last year the PS said there was a 9 month waiting list, if I have enough fat for 2 boobs without taking too much muscle (and compremising my stomach)and they will be B+ then the right one comes off.

Have you got all your hospital stuff, I have been looking for button through nighties but they seem extinct!!!??

L

xx

Tin fish,
Re front opening nighties, yes, not much about, especially light thin ones. I found one in marks maternity range and it was great as the extra room was just what I needed at first. I believe QVC also have zip front ones but haven’t tried them personally. I also bought a full length zip front dressing gown from marks on line…it was perfect a you could zip up or down, so it accommodated my drains etc and let me lie down comfortably without having the wrng thing on display. Really recommend this item…it’s actually brownish grey with pink spots tho the description says grey with blue spots. It was much admitted in hospital but not expensive.

Hope this helps…

Lynette

Not organised yet as so much on, Ive been on and off lists for 2.5 year since i was referred for this op so if you get sorted in 9 month that’s fab. Guess what I got, button down nighty, got them in matalan, not exciting just striped but works okay. I dont think i will be able to put pj tops on but have such a slough pj vest top and pants might take them too just in case as has a wee cardi with it, getting really nervous now. Hey I have loads of spare tummy fat if you want some lol!!!

Oh sloggi knickers someone told me too as they move your belly button, eurrgh makes me cringe, said my op will be about 11 hours as doing both sides, just so worried that I wont wake up, silly I know but that’s my fear, sure everyone thinks the same thing though x

Hi Tinfish

Just a note of thinks for putting the link regarding reconstruction - which I found really useful. I am 53, had mastectomy in July 2010, and mulling over my options. Up until now I just felt I had had enough, but grateful of medical treatment, but needed time to get over things.

Thanks again.

Angela

Hi Ladies

Lisa: I know I feel feel the same as you scared stiff , I saw the nightie in Matalan didnt buy it as it seemed a little short for me. But may get it as a spare. Yes its makes me also cringe re: belly button, my uncle years ago told me if your belly button comes undone you die!!!of course I know thats not the fact but I always remember it. The sloggi knickers sound good will take a look.

Angela: I know how you feel, I feel as ready as I can its been 2 years + since my last op glad you found the link helpful

Lynette: I am off to BlueWater with my friend so will take a look in M & S I will also look at QVC thanks

Genie Bras: I bought a pack of these from BHS £39.95 and they are really comfi - may be helpful after my op but I can wear them with my 1 prohesis (not glamous though)

L
x

I’m chuckling about the belly button thing…I just couldn’t imagine it beforehand either, but I wish I could show you mine now it’s all over…I’m really proud of it! Its been trouble free and pain free, honestly. I had about six tiny stitches around it, and a smal plaster over it for the first nine days…then stitches out and it was fine. I was just slightly aware of it if a waistband rubbed, but otherwise, perfect. Eight weeks on and you wouldn’t know it had been moved, except it’s tighter and more youthful than before!!

Personally I wouldn’t have worn sloggies initially as they tend to come around the area of the navel. I’ve been wearng various kinds of higher waisted support thingies…M and S do a boob less body type with press studs underneath so you dont have to pull down to go to the loo. I have recently got a couple of pairs of firm sloggys but prefer the higher waisted things.