Morning all,
I’m feeling incredibly let down by they ‘system’ after my second ‘round’ with breast cancer. I was first diagnosed in 2009 at age 35, but it recurred last year.
I had a double DIEP in August 2011. At the time I was told I would need several lipofill op’s to tidy up which would start 3 months after the original.
However, it’s now March and I am still waiting to hear.
The result that I have so far is not good - one ‘boob’ in particular is all dented and sits lower down than the other.
I have lost all confidence in with the medical team after they ‘lost me’ in the system and it was nearly three months before I got my pathology. I ordered the Oncotype test (which is private and would help my decision with chemo) but an ‘admin’ error meant the tumour was never sent to America.
When I finally saw the Oncologist (was too late for Chemo then anyway)he said that he ‘assumed’ I didn’t want any treatment. ???Considering he would be the one giving me my options - I was stunned. I also said I was disappointed the Oncotype dx test hadn’t been ordered, he said and I quote ‘Well your long term prognosis is no good anyway’.
I later found out there was no MDT meeting about my care. I wasn’t given access to a breast care nurse etc. So all my chasing up was done via my GP.
I started taking tamoxifen myself 8 weeks after surgery as I was panicking that I wasn’t on anything and I continue to take them.
My confidence is rock bottom. Spring is approaching and I can’t get away with roll neck tops forever. Even with a bra, one looks lower than the other - and I know it shouldn’t be my main concern right now (I’m really not feeling well) but I would just like to think that there’s a end in sight or at least progress towards feeling ‘normal’ again.
Sorry about the rambling. I’m not usually down, but I do feel ‘written off’ :(.
Hi Shonny,
I know how you feel. I had a recurrence too five years after the first diagnosis which resulted in a mastectomy. Because I am quite slim the only option for me was an igap (fat taken from the top of my thigh to create a new breast). I had to wait over a year for the op & when I saw the result I just cried. It was smaller & higher up than the other one. I was told then that I would need several lipofills at 3 month intervals, however it has taken them 2 years just to do two (mainly due to waiting lists & admin cock ups!) and it’s still not right. I have one more lipofill planned for May (but I’m not holding my breath) & then if that doesn’t work I may have to have a small implant put in. I’m really fed up now & wish I hadn’t started down this road now but there’s no going back now!
Like you I’m fed up of wearing baggy tops especially after the last lipofill (which was 3 weeks ago) I was told not to wear a bra for a month - well you can imagine how that went down!!! Even when I do wear a bra only one boob fits in it. However the hospital have now given a “softie” to put in the side which is small to pad it out a bit so at least when I wear a bra again I will look ok when I’m dressed.
As you say we shouldn’t really be worrying about how we look but it is a big part of the recovery process. I’m getting fed up with people asking me why I’m putting myself through more surgery when they think I look ok (they haven’t seen me topless!!!).
Sorry, I’m beginning to rant as well lol! You sound as though you’ve been messed about with right from the start. All I can suggest is that you keep nagging them so you don’t get lost in the system again. I had to that too & I’m sure everyone hides now when they see me coming!
I really do hope you get sorted soon & can get back to normal again.
Love lbx157
Thank you so much for replying.
I wish they were just honest from the start.
I believed a year down the line I’d look like Jessica Rabbit. OK … not that good. But not this bad either.
A nurse at the plastics clinic said to me not to rule out implants. Originally I said no way. But due to the timescales - I’m thinking about it now. I was originally a D cup and now I am barely an A. So you can imagine the ‘extra’ skin I have!
I guess I’m going to have to make more noise. Add grease to the squeaky wheel, so to speak.
Good luck with your recon, would love to know how you get on x