Anyone else had Full Mastectomy & Tissue Expander, then had to have flat chest again?

Hi everyone, I’m really hoping for help with this one… I’ve come through sooo much in the past 2 years, but I’m having more difficulty deciding what to do with the current situation, than anything before. Probably because this time it’s not to save my life! To find out more about my diagnosis and history, please look at my profile… It’s too long and complicated to put here.
Basically, in a nutshell: I had a full mastectomy in April 2010 age 39.
I was meant to have recon using muscle from my back but then I had acute health complications. The surgeon put a Tissue Expander in my breast cavity and did skin conservation.
The T.E. didn’t work though. Distorted, rotated, encapulated by fiberous tissue, pressing on nerves and scar tissue. In terrible pain each fill, during and after. May also be making my lymphoedema worse.
Diagnosed with Chronic Pain Syndrome due to nerve damage - a result of mastectomy and node sampling. Pain across ribs, breast, left side on back and back of arms. Internally and externally.
Filling stopped about 2/3 fill and I was provided with a partial prosthesis. Left with miss shapen breast - not pretty but does give me some shape.
The problem I have is:
I know that by having the T.E. removed it may give me a better quality of life.
It may reduce nerve pain in and around my breast BUT it may make it a lot worse. My doctors don’t know. The degree of pain I have already is not typical of mastectomy patients.
It may reduce my lymphoedema, but it’s well controlled so it doesn’t bother me generally.
BUT it will leave me with nothing…after 2 years trying to get a new breast shape. It feels like a waste of my time, perserverence, pain and tears… I have been through a full mastectomy once already… I don’t know how Iwill cope having the surgery. It will feel like going through a second mastectomy.
I worry about what I will wear. Mastectomy bras are so large and show above my clothes so often and I don’t have the money to replace things.
I’m VERY scared about the pain of surgery. I’m in contact with the Pain Management Team. Pain relief takes the edge of things but I’m still in pain.
Surgery recovery and pain last time, was a lot worse than I expected.
I’m now physically disabled too and am told recovery will be even slower. That would put even more pressure on my husband. He believes surgery is the right decision and has no concerns about supporting me, but I’m still a bit uncomfortable about it.
My head just has so much stuff going round it. I was meant to see the Surgeon this week… for the third time. But I still don’t know what to do. I’ve asked my Breast Care Nurse if I can speak to some one who’s had to make a similar decision: a younger woman who’s had a TE and then gone back to a flat chest, but they have no similar cases of patients in the present or past, that she can call. I also spoke to the Manager of my local Maggie’s Cancer Caring Centre, but she can’t think of anyone either. Hense why I’m asking here. I think it would help to talk to someone who’s had a similar situation. It’d help to know how they coped with the removal psychologically and physically.
Is there anyone else out there, like me? Feeling very alone and scared.
Thank you for reading this.
Rebecca XX
I have posted a similar message on the Younger Women’s Forum and had a few responses. All were helpful in one way or another, but I felt it would be a good idea to also post it on the Mastectomy and Living Breast Free page too as it will be read by different people.

Bringing this to the top for LittleMeg

Jo, Facilitator

Good morning Little Meg, I had my mx 8th May and 6 nodes removed. I did not have time to see the plastic surgen as my tumor was very large and needed removing as soon as possible, When removed it was 9cm long and 3-4cm wide. My surgen put an implaint it with tissue expander in. The operation went well home next day with drains. The surgen had put my implant behind my chest mussle, to look more natrual. Had my chemo Halyf way through them my implant moved from behind the mussle went back to see the surgen, he was disapointed but wanted me to finish chemo and rads before he starting to fill it with any slaline. When I finished cheo it moved even more felt horrid and was also getting very pain full, none of the ladies on my thread were having any pain this far on. Saw surgen just as I started rads as it had moved more and getting more painfil, he then thought if he did put some saline in it may move back to where it should be but just made it worse could feel all the corners of the bag and breast tissue was getting so tight and painful. Surgen said they was no more he could do for me so he passed me on to the plastic surgen. He told me that as there was no tissue other than skin over the implant this was why it has been so painfull,and for what skin it was saving, the implant had to come out asap. He then went on to say to use my back fat a mussle to make a breast, would not be possible as there was not enough fat there and that I also use that mussle when useing my walking stick as I have spinal problems and a week left leg. Reguards useing my stomach to make a new boob he said I had a lot of loose skin and that he could make me a nice breast with that,this op thourgh will use fat and mussel and for a few weeks it can make you lean forward, this would leave my back in a bad position and could cause me a lot more pain in my back, and with tabllet and thing reguards my back I have just got a qualtiy of life back. So I will have the implant out and try and live with only one breast, as I do not my back getting worse again, If I carn’t live with it I can go back and change my mind. but hoping I can…Lots of luck to you little Meg

Hi Rebecca, i’m reading your post, and know exactly where your coming from. I had a mastectomy and full node clearance in Jan 2010.
I had a TE and had and still have severe pain, i had it changed for a silicon implant in Dec 10 i really hoped this would reduce the pain, it did ever so slightly. in june 2011 i was diagnosed brca2+, so i had a prophylactic mastectomy on the other side, this time with a becker implant, which i thought a good idea as these dont need replacing once inflated, only the port needs taking out, under a local. Unfortunaley after 8 weeks, the implant got infected, and had to be removed, i was left with a flat mess for 6 months, until it could be replaced. I really struggled with bras, dressing and just what it looked like. I had another implant put in, this one is fab, looks and feels great. It has made me realise just how much my other one hurts. i have had 2 further operations on this breast to inject fat from my tummy into the scar tissue, this has worked slightly, and lessened some of the tightness
across my chest and arm. But not a day goes by where i dont feel pain, if i have been using my arm a lot during the day, i will suffer for 2 days after.
I really worry, that i have to live the rest of my with what can only be described as a lumpy melon strapped on my chest, but i really dont know what else my surgeon could do, other than take it out, and knowing what i felt like being flat before, I really dont know what to do. The operation itself doesnt bother me, as i have had 11 in the past 3 years, its more the outcome. I really hated the silicon prosthesis, even in the pocket in my bra, it felt far too heavy… so i dont think i’d cope well with knowing i’d have one for the rest of my life.
I really dont know what to do… I’m having some gynae surgery next week, so i will get over that before i see my breast surgeon again.
I hope whatever you decide to do works out to be the right decision for you, and you get relief from the pain.

love sharon .

Thank you Jo (facilitator) for helping to promote my request for help. XX

Good evening Carol Ann,
Thank you so much for sharing your experience with me. It sounds a very similar problem in many ways. Especially as you have had significant complications along the way and physical difficulties too. The decision to have the implant removed and go flat chested on one side, is a very difficult one. For me it will probably be permanent as major surgery isn’t considered an option due to the stroke and other blood clots. We still don’t know for certain that the stroke was caused by the hole in my heart. If it was, then repairing the hole should theoretically prevent another stroke. It would also mean that reconstruction surgery might then be a safe enough option. But, if the hole is found to be too small for a clot to have travelled through, this would make my situation even more complicated as the cause would remain unknown. I think therefore I need to focus on what I do know and learn to accept and adjust to the idea of removing the TE and what that will mean phychologically and pysically to me. Hearing the way others have got through this transition is a great help!
I’m sorry to hear about your struggle and current circumastances and I wish you well with you TE removal. I hope you find it a relatively easy adjustment and that it improves your quality of life. Thanks Carol Ann for your interest and support.
Rebecca xx

Hi Sharon,

Thanks ever so much for your reply. I’m finding it so helpful to read about other people’s experiences of this sort of decsion. I know my situation …is just that - my situation. But knowing my thoughts, fear and feelings are familiar to others, is a sort of comfort. It feels like a small concern when compared with enormity of your situation Sharon! I just can’t imagine how traumatic your situation was and is for you. I’m very fortunate that at present I’m only dealing with surgery to one breast. How disappointing for you to still feel so much discomfort after all that surgical pain. You probably feel very frustrated by it, as I am. I was offered fat transfer to build the entire breast, but have declined that option as I don’t think I could tolerate so many ops - my surgeon estimated 8 - 10 would be needed to build my shape enough. He was doubtful I’d cope well with the pain either baring in mind the chronic pain syndrome I already have. I feel a great need to close the door on all the surgery and really want to just have just the one op to do this. I’ve enough on my plate already to deal with.
It’s interesting that you mentioned you get so much pain! Do you think it is nerve pain?.. like I described above or muscular / anxiety related? I’ve not spoken to anyone else who’s experienced chronic nerve pain related to their breast surgery. It sounds pretty similar to how I describe mine. I was doing yoga at my local Maggie’s Centre every week but I found that I was in terrible pain the following day and sometimes up to the next session! I’ve since taken up Taichi instead. It’s marvelous for getting gentle exercise and toning. I’ve not experienced additional pain as a result of stretching, since that point which is a huge relief. I totally know what you mean about having a melon, by the way!!
I’m very sorry to read that you are having gynae surgery next week too… on top of you double mastectomy. I really hope it goes smoothly and safely. I hope that your recovery will be speedy and that your future health is stable.
Thank you so much for sharing your story with me. You’ve been a great help to me. xx

Hi all. I last posted a few weeks ago before I had my implant removed. I had it removed about 4 weeks ago. Although I feel much more comfortable and am now feeling quite fit and working again, I am not happy with how I look, and feel quite down about it. Just to recap I had MX on left breast in September 2012 with a silicone implant, but because the wound was infected, and never fully healed, it got so bad that the implant had to be removed. The surgeon has left the skin quite loose, but gathered together so it does not look good at all and the creases in my skin show above my bra. He said this is so that there is some skin to be able to do another reconstruction. He recommends the LD Flap with an implant (my size of 38D, so not quite enough fat or muscle in my back without an implant). He said I cannot have another implant, and does not recommend the DIEP for me. My dilemma is that I feel very well again now, but not at all happy with how I look, so I cannot decide whether to put myself through more surgery and go back to feeling ill and having several more months off work and out of action, in order to have a breast of some sort, or whether just to put up with having a flat chest on one side and feeling well and being able to get on with my life. I keep telling myself that for the sake of about 2 months out of action, I will have a breast for the rest of my life. I feel guilty at having these feelings, as I was very lucky in that I had a mastectomy and am on Anastrozole for 5 years, but I did not need Chemo or Radiotherapy or Herceptin, and that all I am worrying about is how I look - but I feel more depressed about myself now than I did when I was diagnosed and had the MX. I think that now I can see the flat chest compared to my other largish breast, I am constantly reminded that I had cancer. I have bought some mastectomy bras and swimwear and prostheses, but I still do not feel the same about myself. I was happier with my reconstructed breast, even though it was a bit of a mess. My husband and family do not want me to have more surgery, so I would be doing it against their will, as they prefer me to be active and living a normal life, and are not concerned about me having one breast missing – but for me it seems to be more important than I thought it was going to be.