Help Advice Diep and Prophalatic Mastectomy looming

Hi Folks,

In ten days I go into hosp ready for op Diep and prophalatic mastectomy on the current good side!, I am beginning to worry, I have made a decision to get rid of my good breast…I was all for it at first but speaking to someone, has unearthed doubts about my decision making…the cancer can come back and come back elsewhere so I am being silly?? I live my life day to day and thoroughly enjoy it, I feel confident and dont have any real issues re my orginal mastectomy or cancer…been there done it and in the words of a very brave lady who lost her battle…I may have cancer but cancers not got me!! Well I have completed my treatments incl herception and I declined tamoxifen…just need rebulding in to the six million dollar woman now!!

I thought beside being risk reducing this would offer me more uniformity with the breasts albeit smaller than the current one 40D. Im a size 16 and the surgeon has told me my breasts will be much smaller!!!
I have read all posts on this part of the forum…thank you ladies…I have been told that the op is likely to be 14hrs long…normally diep 10hrs currently surgeon doing in 8 but as I am having another surgeon at the same time performing another mastectomy then another diep told it will be the full 14hrs. Has anyone else had this done??

I am dreading all of a sudden not waking up!! My hospital also do not use the binding, what are your thoughts on this, is it really needed can I buy it myself?? How much do you swell up?
They have told me to expect 7drains and cathetor.

I still have the option to change my mind re another mastectomy what do you all think…you all know what it is like to go through this…I am single again after meeting someone a year ago (my choice)

whats the pain like too, I dont do morphine and after the mastectomy survived on paracetamol only!! I know I come across as doubtful, I think I worry alittle about this…

You would think I was going to get married and have last miniute nerves!!!

I guess being in my early 40s I would love a relationship and want to be able to enjoy a healthy lifestyle. I know I will again in time… I have since I had my cancer 2009/10 etc… but I am concerned will it bother me losing sensation in both breasts!!! How are you expected to know until it happens???

Is there a definative list too on what or not to take to hosp…I am truely excited about the op apart from the time out of it!!

Can you offer me any advise please??? Am I normal??? Did you go through these doubts??

Thank you for being patient with me, Im having a bit of a day today! xx

Hi, a big decision!
I can’t comment on the double, but can tell you my experiences about a couple of the things you asked about having had a mx and single DIEP.

In terms if pain, I only had paracetamol and ibuprofen…the worst pain was an initial headache, backache and pain in the muscle of my arm after it had been stretched out so long. I had a bit of infection in my boob tissue and that ws hot and a bit uncomfortable but the actual op wasn’t painful.

In terms of outcome, my tum is great, flat, nice tight navel, all scars behind brief bikini line…so probably my body is a couple of steps up. My boob is still settling down and is a D cup, bit bigger than my other one. It’s a bit heavier but looks fine and isn’t hard or wrongly placed. From my experience, if you are currently a size 16, with the benefits to ones tummy of the DIEP, a pert pair of Cs and a flat tum would look pretty well balanced and have a wow factor!!!

My op used 2 teams of surgeons, one did the mx, the other did the DIEP and in total it took 6 hrs. Everyone is different of course, and it depends on the starting point, but from a range of reading I understood a double normally takes about 10 hours. But they need a prep time once you are under the GA which the anaesthetist told me was 45mins for mine, so maybe they are counting this in too? Maybe you could check out the extent of your teams experience in double DIEPs? The surgery tends to be shorter wIth the greater experience they have. And of course, it’s possible to make enquiries and check out if another hospital would be able to operate in a shorter time. Im somewhat older than you, but I was fairly fit. never had any hospital treatment before and I was worried about the GA but didn’t have any problems. I had one boob drain and two for the tum, from the marks they were more or less on my pubic bone. I didn’t really feel them at the time or since. The catheter wasn’t a problem and I was glad I didn’t have to worry about getting out of bed for the loo!

Hope this helps your decision making,
Lynette. X

Hi jo68
I too have made a decision to have a Double mx followed by immediate DIEP reconstruction. Thanks for your reply Lynete, actually was very reassuring to read about your positive experience. Jo its such a huge decision and after everything us ladies go through its no wonder we have these fears, anxieties and doubts. I haven’t got an operation date yet, still have to have the ct angiogram to make sure my stomach is patent for the procedure. I was told the op would take 8-10 hrs, which is a long time and I also worry about. It waking up, which I think a lot of people worry about with anaesthetic.
Though I can’t say anything to alleviate your worries or help you decide what to do, I can empathise as I face the same issues. I’m 40 and a size 18, not as healthy as I’d lime to be. Just had last cycle of chemo so could gladly forget any further medical intervention if it weren’t for the damn cancer still inside me!
Be guided by your surgeon who knows you and your breast care nurse and, of course, go with what you want. You’ve got a long and happy future to look forward to so do what is right for you in the long term xx
I wish you well and will be watching to see how you get on xx
Take care
Sharon xx

Hi Jo68

I just wanted to say that I had a prophylactic mastectomy, and wanted to have a DIEP but was persuaded to have implants. I really wish I’d stuck to my guns, but having said that, things have settled down, and I’m reasonably pleased with the implants. Everyone says they look great, but it’s how they feel to me that has been the problem. They are very firm.

But I wanted to say that if you’re really wavering about the double, why not just have one with an implant (if that option is available to you) and if you decide to have the other one done later, you could then have the DIEP. If you have a single DIEP now, that option is obviously not open to you next time

Good luck with whatever you decide is right for you. I’ve not regretted having the good side done, and the symmetry is very good. That’s something I’ve not really seen on people who just have one side done.

Helen

Thank you ladies…

I had my chemo for 6mths and herceptin for 12mths Had my mastectomy a month after my chemo ended and then rads 25days…declined the tamoxifen.

I am having a Diep…I have asked to have the otherside removed (prophalatic mastectomy) for risk reducing and symmetary.

They told me I would have 7 drains and a cathetor and the op would be 14hrs which went up from the 10hrs!!!

Im due to go in hosp in 10days for my op the day after so no time to change now and to be honest think it would add confusion!

Thank you for your words of encouragement…I promise to be honest in my feedback from my op too.

xxxx

Hi Jo, just posted under other post to you. Believe you me, I actually thought I written a post I had forgotten about when I read yours. I have all the same feelings but was told mine was about 11 because I ended up having the second masectomy which reduced the op by 3 hours. It’s sooo scary being out for that long and totally agree with everything you say, I havent heard anyone that regretted it later. I was in bed watching someone who had a bad reaction to it and it freaked me out a little, I was also ready to go to theatre to have it done and then it was cancelled with 5 mins to go so I had just had the thing about everything that can go wrong, but we need to focus on the positive, the woman opposite was 5 days post op and was shuffling about and hoping to go home in a few days, said was uncomfie but not in pain and was in high spirits.

I’m about the same age as you and have some of the same issues and I am widowed so have the same issues re living life. I’m slightly larger so bit more worried about being healthy for it, however, due to where my current implants sit I am so looking forward to ditching the scarves and being able to wear normal clothes.

Good luck, mine is around 8 days after yours so we can compare notes xx

I have just done a post as my op is a bit different to yours but wanted to say good luck. Cant work out when your op is?

Rattles, xx

Hi Rattles, just posted under your other op, mine is on 28th! Good luck, will be thinking of you, I’m counting how many days and panicing more each day x

Hi Ladies,

Posted on my other post!!!

My op is 21st Feb go in on the 20th…

I have lived with my new look since my first mastectomy and lymph node sweep in April 2010, this was after my chemo and then had rads and was on herceptin.

I’ve actually got alittle angry of late and boy I am sure I am hitting the menopause!!

I declined 8yrs of Tamoxifen due to menopausal side effects.

The op is looming and I am sure I will be fine…I know its sounds silly but I was frightened when under I would give up as the stress of late when it comes to the fore about the op I have found difficult…atleast when I had the first op my head was in some horrid place I just was not able to think, I found my first op a walk in the park and felt happy…after all in the words of my then 12yr old mummy why would anyone cry about getting cancer cut out of them!!

He has told his friends of late how men must support women through these ops and times even though they may be frightened the women need this for them…

God I hope I meet a man who is half the man he already is at now 13.

I am determined to win this do my race for life this year…go to see coldplay, watch the Olympics and celebrate the Queens anniversary oh yes and Waltz with my boys in Dec to Andre Reiu in Manchester

Oh and if strictly want to teach me to waltz ready for that night in Dec and give hope to everyone…I m at the end of the phone, haha.

Im rather used to this space now…although sometimes I wish it werent there…mind you did wear a mastectomy bikini on holiday in August and although alittle on the larger size never thought I would…wonder what I will wear this summer???

I hope you all have some dreams…no matter how small or large…I wrote on the moving on gallery some months back…when I think of my cancer I think of the catapiller in the cocoon the treatment is the formation and then after the treatment is a new beautiful me…it does not matter if you are still trying to win this C…you will have changed and that person you are now is even more beautiful before…

night night ladies (and men if your reading)

xxxx

Hi Jo

Will be thinking of you this week good luck

When you feel like it would love to hear how it goes

Lxx

good luck, will be thinking of you xxx

Hi Folks,

Sorry replying late. Had tonsilitis thus op postponed until a few weeks time, hope everyone elses op went successfully.

JO

Hi Jo

So will your op be in April now, thats what I dont want a delay once I have a date (I hate not being in control!!). It takes so much inside to go through any op, perhaps your body was saying wait a mo, hope you are feeling better.

You just think once the op is done how much better you will feel in your self and also you have your list of things to go to throughout the year.

Also there have been such positive posts on here which I am sure have helped you as they have me so new boobs here we come.

L

xx

Hi Jo, sorry you have had a delay. I had one too, in fact i was waiting to be drawn on when it got cancelled and i paniced and thought it wasnt meant to be, i waited 9 months (dont ask) but now it’s done and so glad - fongers crossed xxx