Second Thoughts.........Scared

I just discovered this site…and am happy I did. I find there are more discussions on reconstruction here than any other site I’ve found.

I was diagnosed in June of 2005. I had a right breast mastectomy in July of 05 and a prophylactic mastectomy in March of 06. Now, almost 3 years later, I am scheduled for DIEP reconstruction.

I’ve met with my PS twice - Dr. John Hijjawi at Froedtert and the Medical College in Milwaukee Wisconsin. I like him a lot and feel is very qualified. I’ve had my abdominal CT to check my blood flow and am getting ready for some skin prick testing for antibiotics (because I’ve had some issues with contrast dye twice and my face swelled from an anitibiotic a while back - all of this since chemo, which ended Nov. 05) Anyway…

the surgery has been scheduled for June 17 but I am starting to wonder if it’s worth it. I’ve read one to many things about the abdominal incision opening up or getting an infection. I’ve read about the ugly scars…fluid build up … and on and on it goes.

Normally, I’m a very optimistic, positive person but I’m starting to wonder if this long surgery (I will have having a bilateral DIEP) is worth it. I am getting very afraid of the “what ifs” and starting to think I should cancel the whole thing.

Looking for some positive words of encouragement…success stories and other women like me.

I am now 48 - an almost 3 year survivor (July 28, 2008 will be 3 years) and am NED - feel great and afraid maybe after this surgery I will never feel as good again…also wondering about how they check for cancer underneath these new boobs.

I know this is a lot of rambling and questions but would surely appreciate any help you guys can give me.

Thanks every and God’s Peace and love to each of you.

Mary Jo

Hi Mary Jo

I am sure you will get lots of words of encouragement form women who have successful recioonstructions which they are really pleased with.

But I just wanted to say that I had a mastectomy in 2004…never wanted a reconstruction…and am perefctly happy with one breast and a good prosthesis.

I think sometimes that reconstructions are promoted as though they are the ‘best’ option…they may be for some women but not for all of us.

I am older than you at 59…but don’t think my decision would have been any different 10 years ago.

good luck whatever you decide.

best wishes

Jane

Hello Mary Jo

I only had a WLE but would most certainly have a reconstruction if I ever had to have a mastectomy. (I’m 61 by the way).

One of my friends, the same age as I am, had a reconstruction a year ago like the one you’re booked in for. Her new breast is really lovely and she’s delighted with it.

Good luck with your decision.

Best wishes
Anthi x

Hi marejo

I don’t if you have looked at our booklet on ‘breast reconstruction’ but you may find it helpful. It can be found at:-

breastcancercare.org.uk//docs/breast_reconstruction_dec06_web_0.pdf

Also if you feel you would like to talk this through with someone, please feel free to use the helpline as the staff will be happy to offer a listening ear if you think it may help. The number to call is 0808 800 6000 and are the lines are open Monday - Friday, 9am - 5pm and Saturday, 9am - 2pm.

I hope you find this helpful.

Kind regards

Sam
BCC Facilitator

Hi Mary Jo

I had a tram flap reconstruction 12 years ago at the age of 40. It was a great success and although the recovery time was very long and very painful (a good two months), I had no post op problems at all. And not only did I get a super new breast, I got a lovely flat stomach, too!

My only reservation is/was that I developed mild lymphoedema in that arm about 7 months after the op. The op was carried out 3 years after the original mastectomy. I have no idea whether the surgery for the reconstruction triggered the lymphoedema, which can start at anytime, but it did involve disturbing the axilla again, so I suppose it could be regarded as the ‘prime suspect’.

No other success stories or any answers to my other questions?

Mary Jo

Hi

just logged on my the treatment has just finished and have met my PS Dr Uppal twice and am scheduled for a tram flap in a couple of months … i thought the recovery was about a month … i have a 1 year old son and have been signed off sine i went on to maternity as i found a lump whilst he was 3 months i was due to go back when the surgery might be booked in for and feel i could be messing them around if i delayed it for a another month let alone 2… is this a general recovery time line …if anybody could help that would be great …

i am sorry i haven’t helped with your questions … xx

I had Tram Flap immediate recon in Dec 06, and have just been in Feb 08 to have the nipple reconstruction.

All I can say is I have no regrets at all, yes the recovery time is longer, but the effect is so natural, and I believe it gets better with time !!

The only person who can make the decision is yourself, and it has to be for the right reasons, just sit and think about the long term and is it what you really want.

I fortunately knew from the beginning that I wanted immediate recon, it was then just the hard decision of which one!!

I am a similar age 49, so it was not that I wanted to wear low cut young clothes, I just wanted to not be reminded of what had happened every time I caught a glance in the mirror.
Don’t get me wrong I have the scars to go with it, but they will fade with time.

I have a very optermistic outlook on life, and even more so now after the BC, so let the positive thoughts get you through the coming months, and you will look back as I do now and think ‘yes’ I made the right decision.

Good Luck

I’m 51 and had left mastectomy, axillary clearance and immediate DIEP on 1 March and have no regrets whatsoever. It’s a big operation, I was in theatre for 11 hours, in hospital for 11 days and off work for at least 3-4 months but I have no doubt the end result will be worth it. I went back to have a little fluid drained off the abdomen a week after being discharged from hospital - my surgeon doesn’t send patients home with drains in - but no more has built up since then. My scars are good, using Bio Oil now after starting with Palmers Cocoa Butter lotion as soon as the stitches were out. Will have nipple recon later on. The tummy is now merely uncomfortable, not painful, when I cough or sneeze, tightens involuntarily when I stand up, and has a numb panel down the centre which will probably be permanent. This is odd but not disturbing. 8 weeks post-op it’s still early days. I take multivitamins and antioxidants, and my skin was in good condition prior to surgery. I wish you the best of luck whatever you decide but I’d certainly recommend DIEP. Lyn xxx

Hi
I had a mastectomy and an immediate DIEP 18 months ago. I was lucky to have no problems and I did not find it painful just uncomfortable - the tummy not the breast. I always knew that I would have a recon done whether it was delayed or immediate no matter how petrified I was about the op - and I was petrified! If the other breast went the same I way I would do it all again. I have met a lot of ladies since my op and know of a couple of ladies who took slightly longer than normal for their scars to heal but they did in the end.
I, too have a numb panel down around my tummy button but it’s something you get used to. I also had a hematoma and some discomfort where they took a small piece of cartilage away by the rib but it really wasn’t a problem. I think how well you get on can be what your attitude is like. If you are determined to get over it you will. I now do nothing else but wear low cut tops - never did before - just so proud to show them off!

HI

I had a delayed diep recon 6 months ago. I am 50. I am slim and didn’t want an implant so my new boob is smaller than the other one but that won’t be a problem for you as they’ll make a matching pair!

Because of being slim the surgeon took as much fat as he could so my tummy was really tight. I was worried when i sneezed but the nurses all assured me the stitches would be fine.

The scars will fade but perhaps your surgeon could show you pictures of his previous work if you’re worried about them being ugly.

I do have a slight problem with fluid in between my ribcage and belly button. It’s been drained 3 times and keeps filling up a little less each time. Now we are going to leave it for 6 months and wait and see what happens. I’m hoping the body will reabsorb it.

The op is a long one and you must give yourself enough time to fully recover, but I am so glad I had it done. I thought long and hard about whether to have it or not and I am so pleased I did. I feel whole again and balanced and although there are scars I don’t have that constant visual reminder of having had a mastectomy.

I no longer worry about what to wear and have started buying pretty feminine underwear. I even shower at the gym rather than going home sweaty!

Good luck and keep us posted.

fantan