Hello lovely - how awful for you. You must be at your wits end. Sounds like you have been from pillar to post with no one taking responsibility for sorting this out. No wonder you are angry and distressed. Where do you live? I have just had a DIEP flap done by an amazing plastic surgeon in London and I know the other surgeons at this big London hospital (NHS and private) are also really highly regarded. If you want details, pm me as I am not allowed to write names on an open post. Can your GP help? Maybe they can intervene? Or refer you to a different hospital on the basis you need to see a specialist surgeon about the wound closure (a plastic surgeon I would think)? Or at least get you some help coping with the distress such as counselling. Keep pestering the BC nurse. Could she get you in to see the second surgeon again? Does your hospital have a complaints system? Is there someone there you can escalate the problem to? Make yourself visible. Start requesting copies of your notes and pathology reports (which MUST state how many lymph nodes removed if done properly because, as you say, they need this info to plan further treatment). It may be ammunition in a complaints procedure. What is your oncology consultant like - could s/he lean on anyone for you? Another suggestion which is a bit under the counter is to find a surgeon who does private work as well as NHS work, get a private consultation with them (a few hundred pounds) and if you like them then see whether they could get you on to their NHS list .... It is sometimes done but depends on the surgeon and your local hospital system I think. Good luck. Sending all my best wishes for a speedy recovery. Xx
Jokely this is heartbreaking to read and I am so sorry you have had to go through this, it sounds like a nightmare. Unfortunately I don't the forum allows clinicians to be named on here so responses may get deleted or edited. I know there are brilliant plastic surgeons out there who can fix you and I really hope you find one. You won't necessarily need to go private - most surgeons seem to work both NHS and private and I think sometimes it's easier to navigate the private hospitals websites to find ones who specialise in this area. Then get your GP to refer via NHS. Just an idea. Best of luck.
I chose to have implants after a double MX in July as the quicker, easier option to get back to "normal" asap but I have had a constant chain of problems (starting with the surgeon marking the wrong breast and causing servere cording with the lymphectomy) and I now feel completely abandond by my consultant and have lost all confidence in my breast care team.
Following infections and surgery to clean it, my implants were replaced with expanders in September which left a very small hole that will not close and is constantly leaking seroma. I have had it stitched and glued at least 4 times and they said they didn't know what else to do. It delayed my 2nd chemo by 8 weeks and then the team said it was "catch 22" and couldn't fix it until I finished my chemo so desided to go ahead with treatment (which I finished begining of March).
My consultant has been sick or on holiday everytime I needed to see since Dec but another consultant stitched and glued me 3 weeks ago which held for 5 days before leaking again. I went to see my consultant last week for the 1st time this year but after waiting for nearly 4 hours I had to leave without seeing them to pick up my child from nursery. The breast care nurse called me afterwards to say the consultant had said to "get me in with a view to replacing the implants" (which have always been temporary). To which I pointed out the 2nd consultant had said I couldn't have replaced while there was a hole in the breast as they would just get infected. The nurse replied "oh yeah...." She said she would get the surgeons to discuss me and get back to me but I'm not feeling hopeful I will hear from them again.
The oncolocgy team have also said I may need more lymph nodes out as it's not clear from my notes how many were taken and radiotherapy is only given after 5 have been removed, (one was cancerous).
I have been feeling pretty depressed but I am now angry and a bit humiliated. The 2nd consultant told me I have been very patient. I look awful, one is under the muscle, the other is lower down and on top of the muscle. My partner won't come near me, (waking up in a puddle of your own juices is the cherry on top of the frankenboobs) I feel repulsive and I have lost all confidence.
I was wondering if anyone had experienced anything similar (will it ever be fixed?) or could recomend a surgeon as I think I will have to go private now?