Hi Ladies
Im on my favouite soapbox right now-Im very impatiently waiting for my TRAM op and Im very disappointed, having seen the PS in early Feb '10 for consultation -13 months now and still no sign of a date. Grrr.
I waited about six months from seeing the PS to having an LD flap. Then it was another six months for implant surgery and another six months for nipple recon. Add to that the six month wait from referral to seeing the PS in the first place, I am now 2 yrs on from original referral, have just got the nipple recon (last week) and still need a tattoo… so no I didn’t wait 13 months (surely something must have gone wrong there?) but the whole process is taking a very long time.
Hi Roadrunner
Yep, it’s a mystery to me why I havnt been called for-another lady I ‘met’ on here had her consultation the week before me and had her op in Dec. Just awaiting the result of a formal complaint to the health board.
Patience patience patience-I have run out of it !
Hope you continue to recover well from all your surgeries.Its a long road, but I know it wil be worth it.
Cathie
I had immediate recon (LD and implant) that went wrong and then waited 18 month for the revision to be done, a further year on the list for nipple recon and now back on the list for tattoo - could be a long wait. Recon is still not very shapely and definitely bigger than the other side but I have given up hope of a matching pair - I just want to be finished!
I don’t feel that I am through treatment as recon is so drawn out and I reckon it will be three years before I look fairly normal. In fact, that is the goal I have set for myself: immediate recon to be finished by the 3rd anniversary.
I think emotionally it is hard - all the waiting, the deferred hope,putting parts of my life on hold eg trying not to look at myself or not starting anything new with a man that could lead to embarrassment due to my unfinished state.I feel that my life is drifting away with all the hanging around.
It is a long road, I am not delighted with the result, but even so I would definitely not have coped without recon.
I feel very lucky. I was referred to PS 4 months after finishing chemo in May which took me to September 2010. She was very good and worked around me with dates. Had ld flap with implant and right mx with expander fitted 1st Feb. (Approx 5 months). The whole process was very quick but thorough, including meeting with healthcare staff to discuss my feelings etc. Very happy with results and due to go for first inflation next week. I’m sorry you’ve had to wait the length of time you have.
I had advice from one hospital that their practice is to wait at least 6 months to let the scarring settle down and to check that there is no issue before doing a reconstruction (ie: a recurrance).
It seems crazy that you can’t be given a date to stop the constant ‘are we nearly there yet?’ feeling. Have you looked to see if there is a NICE guideline covering this (or maybe write to the hospital and ask what the guideline is)? That might get them to move.
Jane, what an awful experience; I have no words to say other than to just acknowledge that must feel unfair - especially as it is supposed to be such a common operation (first done in 1906 I was told!). Have you had an apology and clarification on exactly what their timescale is to get it right?
I had an unsatisfactory operation and asked to be transferred to a different hospital as when I examined my thoughts, I realised I’d given up trusting anyone. Do you feel in the mood to take a friend along and ask for a second opinion before going under the knife again?
Hi Annie
Thanks for your comments. I cant fathom what the problem is, especially when I read that another lady saw same surgeon last fri and was told a 16-18 week wait!!!Unbeleiveable
New guidance came in in Dec '10 relating to the 18 week ‘pathway’ which includes plastic surgery.It seems the hopital doesn’t know it’s ar*e from it’s elbow!!
Ive sent two letters of complaint after several weeks of trying to get some idea of a date.My life is on hold-can’t really plan ahead, go on hols,start decorating etc cos of the ‘wait and see’ attitude of the hospital
Ive asked(2 weeks ago) if I can transferred to another list/hospital-and guess what? they havnt even bothered to respond-yet again. Feel like Im banging my head off a brick wall.
Im sorry to hear your recon story didnt go so well either-Hope you get a good end result.
Cathie x
I think I have stopped trusting them all too, they mean well but I don’t really think my local Cancer Services are particularly competent. Even with the diagnosis and the cancer ops I did not feel they really knew what they were doing,I don’t go for follow up appointments as I feel dehumanised and they seem to have no understanding of the impact of BC. And they treat you like you are thick. The BCN’s are sweet but useless, hadn’t got a clue about recon and all seemed to think the distorted recon was quite good. I was actually referred to the psych re body image so they also tried to convince methat the pain from the recon was all in my head…when the surgeon who did the op finally did look at it he agreed it needed a lot of work to rectify the LD flAP . I just feel like a diseased breast when I am with them and it is too destructive emotionally to stay engaged. I think that they are all so busy and wrapped up in themselves that they could not care less about patients. I feel like an output off the BC Conveyor Belt. No point in complaining as it never achieves anything. Think they are used to it - our Cancer Clinic does not issue “How was it for you” surveys - think they already got the message.
Wishing you all luck and recons you can live with.
As I said my service was excellent and the reconstruction is brilliant. From the BCN’s, to consultants, plastic surgeon etc I cannot praise them enough. There are good trusts out there and in reality they should all be working to the same standards. Very sad.
i see most ladies replying to this have had LD flap and although its pretty major surgery it is minor in comparison to tramflap… around 3 or 4 hours compared to 8 or 9 hours.
LD can normally be done by one surgeon where as the tram often requires two at least two surgeons but sometimes two teams one for the tummy and one for the breast, also not all surgeons are experiened in tram as its a lesss common operation and some times there isnt anybody at your local hosp who an actually do the tram and it is also more difficult to organise two teams, who often work out of different hosps.
i do also know some ladies who have waited longer than 12 months for an LD flap and indeed are still waiting… but in reality they should be able to give you a rough indication of how long your likely to wait… even waiting for 4 months can seem like a lifetime of putting your life on hold waiting for that letterr to pop through your door… but i would say get on and live your life and when the letter comes in you can deal with it then.
Hi
The problem with the wait is the complete lack of any contact from the hospital-not even a letter after the consultaion to say I was on a list or explanation of how the waiting list process works. Since starting this ‘tirade’ Ive heard from others at the same hospital who have experienced the same messing about.One lady was ‘accidentaly’ taken off the list and didnt know. We have to chase and phone just to see where we are-and more often than not, we rarely get a reply.As much bad manners as incompetence.My formal complaint letter arrived after their own deadline to respond, and a follow up letter to them hasnt even been acknowledged and it was sent on the 10th Feb!!!
Cathie
Hi Cathie,
I think I win the olympic sticker for longest wait ever!! Was diagnosed Jan 2007, had Mx, chemo and rads so could’nt have immediate recon. Saw cons after 6 months and told him I def wanted to go ahead, and was told my chances of survival so slim it wasn’t worth it!! kept trying every few months and eventually told to wait and see if I survived 2 yrs!
I did, and went back again, only now had developed probs with my spine, not mets. He then denied me on grounds of disability!!
Thankfully sense prevailed and changed surgeons-now have a fantastic lady who has changed my life, bless her. Has referred me to a hosp which does DIEP as my hosp doesn’t, and this should not interfere with my back as doesn’t use muscle. Been accepted, but told I will prob have to wait until autumn, so that will be nearly 5 years!!
Howzatt!!
Best wishes, Jax
Hi Jax
Make that a gold olympic -sticker!!What a saga. Glad to hear that things are on track for you now hope you get a good result.Good for you for sticking with it and finding your ‘saviour’.
Wish I could say my wait has been so complicated-at least Id understand why its taken so long!!!
Best wishes for your new boob xx
Cathie
Nice to hear from you-we’ll be recovering at the same time!! Hope we will both be happy with the results-I cant wait to have two boobs again!!and a cleavage lol
Best wishes
Cathie