Anne's news: masectomy + reconstruction

Dear All,
This is my first time on this forum. I have used Macmillan in the past. I did not think I would be back as a “patient” on any forum but hey ! 3 times lucky they say…

I am 42, I had lymphoma in 1993, breast cancer in 2007 treated with small surgery and radiotherapy and now it has been confirmed today that the lump in my breast is yet another breast cancer, hormone positive this time…bad luck hey ! the only option is full masectomy and hopefully reconstructive surgery at the same time.

Early stage and not “urgent” - we are looking at end of August/September. They are also talking about tablets afterwards but not necessarely Tamexofin as there seems to be new treatement around.

I would like to hear form ladies that have undergone this type of surgery ( but not only of course, everyone’s is welcome in this maize of emotions !) re recovery time, long term effect and tips if any !

Hi croquette

Welcome to the Breast Cancer Care discussion forums. I hope you find them a great source of support and information.

Whilst you wait for the other forum users to reply with their experiences you might find it useful to have a copy of the BCC boolet ‘your operation and recovery’. It includes information on breast cancer operations and recovery times. If you would like a copy just follow this link:-

breastcancercare.org.uk/upload/pdf/your_op_and_recovery_07_web_0.pdf

I hope this helpful.

Best wishes Sam, BCC Facilitator

Thank you Sam, it is really helpful
Thanks again
Anne

Hi Anne, sorry to hear that you have to have more treatment again after all this time. I had a mastectomy and reconstruction in February. I was in hospital 4 days but I came home with the drains so I had to go back a week later to have those out. The dressings came off about 2 weeks after surgery. It was about 3 weeks before I felt able to drive again and I went back to work around 6 weeks after surgery. I admit that I religiously did the arm exercises they gave me and had full movement back before I went back to work. I also went for long walks every day to try and keep up my stamina and fitness levels. I did get a seroma which I believe is quite common but it disappeared of its own accord after about 3 weeks. Pain wise, it wasn’t too bad, not as bad as I had anticipated. My recon was a tissue expander - supposedly permanent but it has unfortunately slipped so I am going back Sept to have it replaced with a silicone implant. Luckily for me I didn’t need any further treatment other than Tamoxifen. Obviously I would have preferred not to have had anything done - wouldn’t we all - but it hasn’t been as terrible as I imagined. I think you can worry yourself to death thinking about it all too much. Although the current implant has slipped, I’m not unhappy with the recon and I am still able to wear low cut dresses and tops. Most people I work with are unaware of why I was in hospital so it really isn’t obvious. The scars have faded well with the help of bio oil and are only visible in my tiniest bikini!!
I hope that has put your mind at rest a little. Thinking about it is definitely the worst bit.
Good luck and I am sure it will all go well.
Val

Thank you very much Val for your feed back and encouragement. It is very helpful to hear from another woman who has been there, but I am sorry that you have had to go through this yourself.
I have great difficulties considering that I would wake up without a breast…I see “reconstruction” as my piece of normality, if it makes sense. However, I have been made aware of the possibility to be “deminished” physically after a back flap surgery. I am not expecting to have a “new” breast without any trade offs, but I was wondering whether you have fully recovered and able to do all the things that you were doing before the ops ?
We have a few more weeks to mull it over which helps, or does it not? I am not worried about the surgery at such but I am concerned about loosing some mobility and freedom to do things…
Anne

Hi Anne and Val, I will also be having a masectomy and would like to have the reconstruction surgery at the same time, hopefully a silicon implant with no removal of tissue from my back or abdomen. I presume this is the same as what you had, Val?

I imagine that the loss of muscle tissue in my back will impact my ability to play tennis, golf or other sports. I don’t think there is much difference asthetically between silicon implants and muscle tissue. Why did it take you six weeks to get back to work, do you have an office job or is your work more physically demanding?
Thanks,
Kayla

Hi Anne and Kayla,
It is such a big deal isn’t it? losing a breast? They have never been my best feature but it was still a huge deal to get my head around. I do know exactly what you mean Anne. I didn’t have a back flap taken or tummy tuck as I am quite slim and apparently the surgeon didn’t want to take tissue from there as he felt it would be too painful (which is good in some ways I guess)I do know that having muscle removed from the back or tummy can affect movement depending on how much is taken. From what I understand though, you do get a better and much more realistic ‘finish’ using your own tissue but I just had the silicone/saline expander implant. I have to say that it does look and certainly feels realistic so I am a bit annoyed that it has slipped out of position and I have to have it replaced with a silicone implant. (oh joy! more surgery!!) Mobility wise though having this surgery hasn’t stopped me doing anything at all. I can do everything that I did before. I was back at the gym after about 3 weeks. I haven’t done any press ups but I have lifted (fairly light) weights at the gym, as well as the usual stuff, treadmill etc. I do a Marine Training programme(much to my surgeon’s absolute horror!!) which I am able to continue. I haven’t tried badminton or tennis although I used to play. With the new surgery coming up I suppose that will be on hold for a bit longer. It’s easy to say don’t worry but my biggest fear too was losing mobility in some way.All I can say there is keep active and do all the exercises they give you. In all honesty though having a mastectomy hasn’t stopped me doing (or wearing) anything I wanted. My surgeon was adamant that recovery was far quicker the more mobile you were. (I even went for long walks with the drains still in! - slung in a bag over my shoulder - yuk!)
I was off work for 6 weeks because I work in a secondary school and they were worried I would get bumped or knocked so the doctor signed me off for a month but it (rather fortuitously) tied in with holidays. Truthfully, I felt able to work once the drains came out and I did do some work from home. I was determined to get back to normal as soon as I could but obviously everyone is different.
Please don’t be surprised if you find yourself a bit tearful afterwards - I think it is perfectly natural to feel ‘grief’ It is a horrible thing to have to go through and no one goes through this by choice. Be reassured though that it won’t be as bad as you fear and your surgeon won’t take you off his books until you are happy with the result.
Good luck to you both and do let us know how it all goes.
Val x

Hi
I am also going for an mx in a couple of weeks and mine too will be using tissue from my back. I am all over the place at the moment, I just can’t get my head around it all - 3 weeks ago all was well then i got the momogram results! I was told it’s grade 1 but unfortunately because there are 3 little bits the area that needs to be removed will mean a lumpectomy will not be possible -strange because I always thought I had quite a big bust but apparently I don’t!
I agreed to a back flap op, at least it felt like I was agreeing to it but in reality, I think I just switched off as soon as the doc mentioned an mx.

Now I don’t know what to do, I am thinking that implants would be better as the recovery time seems to be a lot less but then I think I don’t want to look lopsided. I read a book which explained it all in an easy to understand way and I changed my mind back to back flap but today… I am just a mess again. I don’t know how to get my head into a place where I am sure I am making the correct decision. Can anyone help me please?

Madge

Hi Anne (and Madge)- my daughter has had a similar history to you with a recurrence in her other breast.

8 years ago (aged 32) she has a mastectomy and lattissimus dorsi flap recon and then this Spring she had a second one on her other breast. The op IS a long one - 8hours plus - but she made a good recovery both times,t had a 2nd baby 4 years ago & is due to return to work part-time in a week or two after her 2nd op.(she’s a nurse). Cosmetically the effect is very good and it has helped her a lot in coping with her diagnoses knowing that she has been able to have good recons.
Do hope this encourages you .

I had radical mx&ld flap recon without implant in feb this year, it’s a big op and there is of course a sizeable scar on the back but the result is a very natural feeling new breast and hopefully once the nipple is done it will look very realistic. I was driving after three weeks and can reach overhead with no problems. Hope this helps! X

Thank you Tina and Topsymo, your comments are both encouraging and helpful.I am, in general being really positive about the whole thing but every day I have a moment of terror where I want to just hide under a tree!
Reading the encouraging posts from all you ladies out there is definately helping and I have no doubt I will be back on here when I next find something about the op to worry about!

Thanks and wishing good days and outcomes for all of you

Madge

Hi Anne
I too was dx with calcifications in my breast this week, after going through a wle in July 2007 followed by chemo, rads and herceptin. These calcification were picked up on my mammogram and due to my history the consultant advised I had a mastectomy even though the cells had no cancer present. I have had a look at the booklet the bcn gave me and I am coming round to a recon as well as I have reasonably big boobs and cant imagine living without a breast. I have had abdominal surgery in the past so a tummy op is not really on the cards so I am thinking of having a recon using the back flap. Meeting with the plastic surgeon next week so hopefully he can help me come to a decision which is best for me. Still trying to get my head around this, as although I was relieved I dont have cancer again, I really didnt expect to have to have my breast off, even though in hindsight I know it greatly reduces any further cancer. Would appreciate any thoughts anyone may have regarding complications with a recon as I dont really know the cons. Thanks, Annabelle

Hi Anne
I too was dx with calcifications in my breast this week, after going through a wle in July 2007 followed by chemo, rads and herceptin. These calcification were picked up on my mammogram and due to my history the consultant advised I had a mastectomy even though the cells had no cancer present. I have had a look at the booklet the bcn gave me and I am coming round to a recon as well as I have reasonably big boobs and cant imagine living without a breast. I have had abdominal surgery in the past so a tummy op is not really on the cards so I am thinking of having a recon using the back flap. Meeting with the plastic surgeon next week so hopefully he can help me come to a decision which is best for me. Still trying to get my head around this, as although I was relieved I dont have cancer again, I really didnt expect to have to have my breast off, even though in hindsight I know it greatly reduces any further cancer. Would appreciate any thoughts anyone may have regarding complications with a recon as I dont really know the cons. Thanks, Annabelle

Hi Everybody,
I havent posted for a while because im feeling fab but saw your thread and thought i could offer some words of encouragement.
I had a mx and immediate ld flap recon plus a reduction and uplift on the other side - turned into a 9 hour op!!
The one thing that nobody told me that i find niggles me is the backache. I guess it makes sense that they have taken a muscle away so the others have to work harder. This is a very small price to pay. Everything else looks good and i couldnt be more pleased!! It takes quite a long time to settle down. I had mine done in March and its only just started to feel like a breast. The one thing to remember is that this is BIG surgery so dont expect miracles straight away (easier said than done, i know!) but it really will settle down and feel normal again. My scars arent as bad as i expected including the one on my back. I actually had a tattoo of the bc ribbon next to my scar on my back with “survivor” written inside - im very proud of my scar and my ribbon because its enabled me to plan a future.

The one piece of advice i would give is to buy a V pillow and a hot water bottle for your back - I relied on both of these things for months.

good luck to all of you. Any questions then just drop me a line.

deed
x

Hello all

thanks, anne for the positive feedback. I have been diagnosed with DCIS for the 2nd time in just over a year so am having a mx and recon on 6 Sept. I have opted and been recommended to have the ld flap recon and as i am fairly small (34D) will not need an insert. i am a little afraid of the pain in the first few days, but am sure i will survive! thanks for the tip about the hot water bottle and pillow. i am not happy to be having this done, but am thankful to be living in this day and age when it can be done… if you know what i mean?