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 an 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 presssure 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 tomorrow… 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. PresentPatients 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
Hello Rebecca ,
I had a skin sparing mx with immediate recon. I can remember waking up from my op and saying that I thought my new breast was very small. I too didnt seem to like it at first BUT then my BCN came along and fitted my bra and I started to feel a bit better about myself. I always wear a T Shirt bra as this helps to pad me out a bit and in clothes I do not look too bad at all.
I was trying to think how I would feel if I had to have my TE removed and suddenly become flat chested. I am not sure at all. I would want the surgeon to assure me that I would not be in any more pain , but you say your surgeon cannot guarantee that you will become pain free or that your lymphodema will improve. Maybe you could ask what will happen if you decide to keep the TE in place? What benefit is there for another operation without any guarantees.
It is a very difficult decision for you and I wish I could provide some more answers but I have replied in the hope that other ladies will think of something inspirational to say and advice on what to do next.
Take good care of yourself, sending you love , hugs and positive vibes, Love Tracy xxx
Hi Rebecca,
I had an expander fitted on my MX in Dec 2010 as a last minute decision because i couldn’t face waking up to ‘nothing’. I HATED it. It sat very high up on my chest so even in ‘disguising’ clothes, i was still aware of my mishape, it was also very uncomfortable and affected my posture resulting in shoulder and neck pain. I requested removal in June 2011 as i couldn’t take it anymore. It was the BEST decision for me.
Even though one side is now flat, I was so relieved it was out. wearing clothes my prosthesis now makes me look ‘normal’ which definitely wasn’t the case before, and I no longer have the discomfort of neck and shoulder pain. Once removed, I decided that at time I couldn’t face anymore surgery and needed to get my life back before I made anymore decisions, which removed a lot of pressure from me.
18 months later and I now feel stronger both physically and mentally to reconsider my reconstruction options, but know that at the end of the day it’s not just about appearance.
Hope this helps xx
Hello Rebecca,
I am sorry you have been through so much, and so many complications.
My situation was a bit different, but enough similarities to make me think it might help to hear my experience.
I had b/c in 2009 in my right breast. Was treated with chemo, WLE and rads. Then I was told I had a very high risk of b/c returning so in Feb 2012, I had bilateral mastecomies- I had implants and kept my skin. Because I had had rads, the left breast was slow in healing. Unfortunately, I had breast cancer in my right breast so I had more chemo and while on chemo developed an infection in the left breast. So, I had the implant out and as all the skin and tissue had to be removed. I continued to have problems with healing and the skin is poor quality and fixed to the chest wall so its very painful and uncomfortable. Its not clear whether I would be able to have another go at reconstruction and like you, I have lymphodema.
Like you, I was devestated when the reconstruction failed- in some ways it worse than the cancer diagnosis as I just felt that everything I had done was very nothing (I had alot of complications after the bilateral mastecomies). It was very strange to find myself with one breast and to be honest, I have only just got used to being assymterical. Becasue of the poor healing, I could not wear a prosthetic. I am not that happy with how I look but I just dont think I could face more surgery, although I except that this might change in the future. Physically, I felt so ill and the infection was suh a mess, this took priority. What I would say, is that the op to remove the implant was short and easy- even though I was on chemo at that time so it was serious stuff. That is not to minimise your worries.
I agree it would help to talk to someone-what about having a chat with the BCC helpline? They are really helpful.
Let me know if i can be of any more help and good luck.
Rattles x
No-one can tell you what to do, and you need to take the time you need to make the right decision for you.
rebecca it might be worth ringing the helpline Peer Support team as they have a data base of volunteers who have had a wide variety of treatments and they might be able to find someone in their database who has been through what you have and help you make the decision right for you. good luck x
Dear Little Meg
If you would like to chat to someone on our freephone Helpline, we are open 9am - 5pm on weekdays and 10am to 2pm on Saturdays, you can read more about the Helpline by clicking this link:
breastcancercare.org.uk/breast-cancer-services/ask-us-your-questions/helpline
To read more about the One-to-one peer support servcie that saffronseed mentioned you can take a look here:
breastcancercare.org.uk/breast-cancer-services/someone-talk/one-one-support
We also have an email One-to-one peer email support service as well:
breastcancercare.org.uk/breast-cancer-services/someone-talk/one-one-peer-support-email
There is also a general Live Chat on a Thursday night 8.30pm - 9.30pm on a Thursday night where you can “meet” other people and chat, please follow the link below:
breastcancercare.org.uk/community/chat
I hope these links are of help to you.
With best wishes.
Anna
Thank you so much everyone for responding to my ask for help. And so promptly too. It’s reassuring to hear others understand the frustration I feel and the difficult decision I have. I know it’s highly unlikely that I’ll meet someone who’ve experienced a parallell situation as it’s been so complicated, but finding people who’ve been through similar experiences is a great help and comfort! 
Hi Tracy,
Thank you so much for responding to my message and for sharing your experience with me. It was a lovdely message and I really appreciate your taking time to help me.
I had a similar feeling when I came round from anaesthetic after the mastectomy / T.E. implant. I hated the thing initially. It was so hard and alien. I could feel it all the time and it would move around under the skin if I exerted myself or put strain on the shoulder or chest muscles. Once it settled I got used to it on the whole, though I’ve never liked the feeling, If it weren’t for the pain I now get, I think I could possibly just remain as I am - with the current temporary implant, permanently. I hate the way the area feels, but I don’t have an issue with touching, holding or using a prosthesis. But nothing is never that simple, it seems. The pain is awful when I get a bad day. I can’t do anything. I stay home and hold a heat pack to my chest area and take additional pain relief.
I hope your health is good now. Thank you for your positivity. 
XX
Hi Jo-Jo,
WOW, your situation sounds very similar to mine. Thank you so much for sharing that with me!! My T.E. was also a last minute decision - not by me, but the surgeon a couple of days before my op. Poor communication in the team meant no one had informed one another of my stroke. My husband asked as we were leaving my pre - op appointment, which day I should stop taking my anti - coagulant medication (so I wouldn’t haemorage during the op!) She was totally unaware until that point and was planning to perform an LD Back Flap to create the new breast whilst removing the tumour. She couldn’t do such a major op though, whilst I was on the stroke medication or whilst there was a risk of other stroke or other blood clots. So, she had no choice but to give me a T.E. Had she just said I can’t do any recon at all… you will have a flat chest when you wake up and it will be permanent, I would have accepted it more easily I suspect. My situation is still similar, in that I’m still can’t have recon surgery due to blood clotting and stroke history.
Asking to have it removed was a brave decision… I’m so scared to ask for surgery!!
Was your pain tension related? Or nerve pain: shooting, stabbing, pin - pricking, burning, stinging sensations? I’m curious. I’m so hoping that removal will improve this sensation for me. How long did it take you to recover from the op?
I think I shall probably find more questions for you Jo-Jo. I hope that’s OK? Thank you so much for your support. It’s been very valuable! I hope you are adjusting well to your ‘new you’ and that your future health is good.
Many thanks XX
Good morning Rattles,
Thank you very much in sharing your story too. What a dreadful experience for you. I’m so sorry to hear that. To much emotionally and physically to deal with accept. I truely hope that things are more settled for you now, health - wise. I imagine I will feel a similar sence of uneasiness, incompleteness and asymertry following the removal of my T.E. How long was your recovery time? You have made some very good points and I agree, time is possibly what I need… I agree. I unfortunately feel I need to made a decision too, in order to move forward and organise my future. Getting back to some form of job, is on my mind… Not because I am burning to do so. But because I feel a lot of guilt and don’t want to lose my current links with an old job. Which I fear will be cut by them very soon. It scares me because it’s one of the few jobs I believe I could actually do and want to do right now, that brings in reasonable money when I’m working. It’s me putting pressure on me and I’m aware of that most of the time. Thank you Rattles for your time. It’s been a great help reading about your experience! XX
Hello Saffronseed,
Thank you for finding a moment to reply to my ask for help. I’ve not heard of the Peer Support 1:to:1 option on here. I will definitely look into that idea. Thank you so much!!
Hope your health is good and you are having a good day Saffronseed. 
XX
Hi Anna,
Thank you for your links. I have used the phone support service a couple of times in the past and was a regular on Thursdays to the group support… up until I lost a good friend due to breast cancer. I met her through this website and chatted every Thursday in the group. Wasn’t the same without her. But I would consider joining in again. It’s about 9 months since she died now and time I thought about using it again perhaps. I will look into the peer support options some more.
Thank you Anna. Hope you are having a good day. XX
Hi Rebecca, it’s nice to feel useful!
I don’t think it was a brave decision at the time, I was just sooooo unhappy with the appearance it gave. As i said, it was so high on my chest. much much higher than my other breast, i was so conscious of it all the time. The neck and shoulder pain could have been tension related as i am aware that i hold myself tightly when i am stressed, but i think the tightness of the expander contributed to the pain. It wasn’t stingy or burning, more like constant stiff neck/shoulders which probably meant my posture was suffering to compensate and it also meant sleeping was also difficult, tiredness making everything worse. Also the port that they fill the expander with had moved around from under my arm to my back and although that didn’t hurt, i could feel it.
The operation was a day surgery case, still under a general anaesthetic, but much easier, no drains, home same day once i’d had a cup of tea. I think they made a small incision under my arm, drained it and whipped it out. Don’t remember any pain after, just bit sickly after the general but that’s normal for me. Recovery was instant and the relief that it was out was brilliant. Being able to wear a normal tshirt without that lump protruding(albeit with my prosthesis inside) was wonderful. The expander was no benefit to me whatsoever, it offered nothing remotely like a cleavage just a horrible lump and i was so relieved it was gone especially the constant discomfort.
Hope this has helped a bit more, take care
Joanne