What's Going On?? Advice Needed.

Hi

I was diagnosed with breast cancer October 2007. I had a mastectomy on 1st November. Reconstruction was mentioned but immediate reconstruction was not offered to me.

I started chemo during the middle of December and finished on 26th March. Radiotherapy started on 8th May and is due to finish on 5th June. I received an appointment today to see my Oncologist on 28th July, I have not seen him since 5th March. Is it me or is this a long time to wait??? I assume this is when he will put me on Tamoxifen - but I don’t know. I’m desperate to talk to someone about reconstruction but don’t want to wait until 28th July. Who do I talk to about reconstruction my Oncologist or Surgeon? I have a feeling this is going to be an uphill battle. My b.c. nurse is little more than useless the last time she said she would ring me was 7th November - I’m still waiting.

Please someone help - what do I do???

Hi Billiejeanking

Whilst you await replies from your fellow users, I am posting a link to a BCC publication about breast reconstruction which you may find helpful to read, you can do so via the following link:

breastcancercare.org.uk/docs/breast_reconstruction_dec06_web_0.pdf

You are also welcome to call our confidential helpline if you would like to talk things through or access further support and information on 0808 800 6000, it’s open Mon-Fri 9am-5pm and Sat 9am-2pm.

Best wishes
Lucy

Hi Billejeanking

Sounds like you might just have an uphill battle on. I would suggest as a first point of call you ring your bc nurse and keep ringing her till she gets something sorted or at least questions answered. It may be that they wont refer you till you’ve finished radiotherapy as you normally need to wait at least six months after radiotherapy before they will try reconstruction.Ask them if they will refer you before you have finished radiotherapy (although that’s not far away) and how long the waiting lists are. In the mean time use this time to research how good your hospital is for recons, how good the plastic surgeons are and have the usual list of questions ready.
Your bc nurse seems less than useless so make her do something for you for a change.

Hello Billejeanking

I have sadly had the same experience and it is very upsetting and frustrating at a time when support is crucial. Keep at them! Ask to speak to another bc nurse. I didn’t get on with mine at all and found her usless although I hate to complain, but pushed to the limit one day, I asked for another one and she was lovely and totally different and it made all the difference.

Hugs

Neenie x

Sorry I have not been back sooner.

Many thanks for all your comments - and yes - I have done something!

I’ve been onto my breast cancer clinic and spoke to a different nurse who was most helpful. She is going to get me an appointment with my consulant and surgeon who performed my operation with a view to getting the ball rolling for reconstruction. Obviously waiting to talk to my Oncologist on 1st August was not the right thing to do! I feel much happier in myself now that I’ve got a positive response. I want to look normal and I feel I am on the road to achieving this.

Thanks for your support!

Lynda

Hi

I was told by a friend (who is a consjultant!) not to do anything until all treatments are finished and preferably wait 18 months from date of surgery. I am just coming up to the 18 months now and my views have changed sinced I had a bi-lateral mastectomy. I think the time wait is sometimes good for “thinking” and not rushing, panicing - if that’s how its spelt! - in to the first thing that’s suggested. I think we sometimes get blinkered into going down one route without looking at any others - if you decide to go for reconstruction research all the different types before you see your breast surgeon, who may only carry out one sort. Who’s to say that you might not prefer another type. Good luck whatever you decide to do.

Sharon

Regarding reconstruction I found I had to make all the running: my breast surgeon was very worried about implants for me as I am small and thin, anticipating skin problems. He sent me to a colleague plastic surgeon who offered LD back flaps which I researched and decided it was not for me because of possible nerve/tendon problems. I then looked at other flap options like TRAM etc but decided in the end because I wanted to get on with the mastectomies to go for the expander implants, with the option of being referred elsewhere later on if things don’t work out. This process took at least a year to sort out and I am glad the ball was in my court all the time as I do feel in control of what is happening to me. I quite like my new breast and it is only 6 weeks old; there is a lot of settling down to happen before I decide whether I like them enough to stop here.

Many thanks for your response.

I have an appointment with my Consultant on 24th July and have been to the breast clinic today to see a dvd, they have also loaned me a book. I felt I was being steered away from a TRAM flap (the one where they take the fat out of your stomach!) as I was told I would be in surgery for at least 9 hours and it was a major procedure. Also I would not be able to have it done at my local hosiptal. I wondered why if it was such a nightmare that some women did have it done. I do feel out of my depth but intend to read and find out as much as I can.

Many thanks for your help.

Lynda

Sharon,

Oh how I wish I’d known your Consultant!

How much sense he talks. I thought my Consultant was God’s gift, simply because he COULD do reconstruction at the same time as the surgery. I have to say I have a serious problem with anything medical (I faint at the sight of a needle!) and the idea that it could all be done at once was, for me, the best thing. I remember him saying that if I didn’t have the reconstruction at the time I may never have it.

How I wish I’d waited! Because it was lobular and I had no classic ‘lump’ (the tumour was 5cm) etc I was prepared for a mastectomy. On the morning of the op he came to my bedside and said he’d had a word again with his collueges and they thought they could ‘save the breast’ so a mastectomy may not be necessary. He did the first op and it all looked ‘very nice’ but they didn’t get clear margins. SO I had to have the mastectomy a month later.

Apart from the fact I had 2 operations, I can’t get the thought out of my head that he did what he did without thinking about me. The result is appalling. My lovely Macmillan nurse actually asked me if I was happy with it (she knew it was a mess) - he never did - and told me about the plastic surgery team at Charing Cross. Bless her, I did see them but the only option is too much…tram flap etc and I ain’t going to do that of my own decision!

Love Caz xxx