I had DCIS 4 years ago and had 2 lumpectomies plus radiotherapy. I had my annual check up 2 days ago and there is more DCIS. I hadn’t realised that I couldn’t have any more radiotherapy on the same breast so we are now talking MX.
i can get my head round the need to have the MX as once its gone it can’t ever spread but I am really struggling with the prospect of reconstruction. I don’t think I would be able to cope emotionally if I didn’t have any reconstruction but reading up about all the different alternatives is starting to panic me already.
i have to go for a biopsy next week to confirm the diagnosis but I know the consultant is certain that it’s DCIS and she has already started discussing what option I will have. I am fairly well endowed in that area (40dd) so we are probably talking about reducing the good one so that there’s some symmetry. I will be discussing it with my consultant but would really appreciate some advise from those who have been through it.
My instinct is that I would go for the reconstruction at the time of MX as I am not sure I could handle waking up with it gone totally but am I being over emotional?
It’s a ‘no-brainer’ for me to have the MX as I don’t want to live with the threat hanging over me of it coming back and being aggressive but I hadn’t realised what was involved with the reconstruction surgery. Can anybody tell me their experiences have the DIEP flap?
Hi Duffer56
Welcome to the BCC discussion forums where I am sure you will get lots of good, honest support from the many informed users of this site. To help you along I have put for you below the link to BCC’s publication regarding reconstruction and the link to our animated publication which I hope you find helpful. For more support you might like to give our helpline a ring and have a chat with the staff here who are here to support you. Calls are free, 0808 800 6000, lines open Mon-Fri 9-5 and Sat 10-2
Reconstruction pubs: www2.breastcancercare.org.uk/publications/treatment-side-effects/breast-reconstruction-bcc7
I hope you find this helpful. Take care,
Jo, Facilitator
Hi Jo
I have taken a look at the animated publication which was really helpful - thank you. I have also emailed the helpline and am waitingfor a call back from them so that I can discuss my concerns with them.
Thanks ofr your help
Carol
Duffer56
I was diagnosed in June 2012, I have had 2 WLE, then had a breast reduction to get rid of DCIS no joy then a masectomy,
I had immediate recostruction, like you I was well endowded. I had my mastectomy in November and feel great, I feel happy with my body now wear size 12 not 14-16 and I am having chemotherapy which I am coping with fine half way through. Must admit was scared of chemo as heard all the stories, and thought I would be laid up in bed and look like a sick person. I have been having cold cap , have all my hair, go to work as normal. I have the odd bout of feeling sick, I pop the pills and feel fine.
I would say discuss with you PS as to what size you want to be , they can work wonders.
Good luck in what you decide. Be prepared to be in hospital for around 7 days due to the drains
Regards
BMW07
Hi BMW07
Thanks for the post. It’s all so new and scary! As I had got through the last bout I just assumed it would be more of the same and it stopped me in my tracks when the consultant started talking masectomy! I know it’s the right choice but it was when I started looking at what went into the reconstruction that I realised how unprepared I am. We are very early stages at the moment but I know I will need to make informed decisions reasonable quickly. I think it scared me more than reassured me trying to find out information on websites - it’s really good to be able to talk to others who have been through it themselves. The animated guide was very helpful.
Is it normal to have chemo for DCIS - I was working on the theory that if they tke it all away then it can’t spread - is there another aspect I need to consider?
Hi Duffer,
I’m glad you found the links helpful. The helpline team will email you within the next few days although as they are closed on Bank Holiday Monday so it may be later in the week when they respond. If you want to talk to them soon it’s not a problem if you give them a call. Calls are free 0808 800 6000.
Take care,
Jo, Facilitator
can anybody tell me what they would be looking for by doing the biopsy? If I am going to go for the MX won’t that take the problem away?
It does seem odd to do biopsy at this stage, unless mastectomy is not your only option.
I know they like to know what they are dealing with every step of the way, especially if there isn’t a certainty that it contains purely DCIS.
I had DCIS at firstdiagnosis with an aggressive tumour, had 2 x lumpectomy, then mastectomy which contained only DCIS (pre cancerous cells)…
Good luck keep us updated
Maggie x
I guess as its 4 years since I had the lumpectomies and they confirmed that it was ‘only’ DCIS that they need to be certain. I think I may be being complacent that’s it’s only DCIS. They have said they will arrange the biopsy ASAP but it’s had to wait because of the Easter weekend.
i had got my head round the need for the mastectomy as the problem goes away then - I hadn’t realised that it might be worse than that. It seems like my head is drip feeding information!
Role on next week when I can find out for certain what I’m dealing with.
Carol
Hi Duffer 56
I have had to have chemo because they found 2 nodes affected , otherwise I was just going to have Radiotherapy and Tamoxifin
But as you know , this journey changes at every junction, so I just keep an open mind everytime I go.
So just keep and open mind and keep positive.
Best Wishes
BMW07
And Im not having radiotherapy now
Hi could you tell me what sort of reconstruction you had and how quickly you recovered from it
Carol
Carol
I had TRAM flap reconstruction basically , they use the skin from your stomach to make a new breast- so you get a free tummy tuck in the process, I ve lost around a stone in weight since my operation and I have a flat stomach now.
Best wshes
Norma
Carol
I was in hospital for 6 days , and recovered fairly quickly, i did have some complications as part of my reconstruction died so had to have a vac pump to help with healing, I had operation 23rd November and went back to work on 6th January.
I have a fantastic plastic surgeon and a team that look after me. Im in Hertfordshire.
Best wishes
Norma
Hi Norma
thanks for the reply. I feel better for getting an idea of what’s involved.
regards
Carol
Hi Carol
I had DCIS five years ago treated with WLE and radiotherapy , then last year I had a recurrence. Had a mastectomy with ld flap, expander implant and strattice mesh on July 12th. Because I had had a lumpectomy and radiotherapy 5 years ago, I also had a substantial skin graft as well. It took a long time to heal completely - about 9 weeks, and the implant filling started three months after that, the week before Christmas. This was done 50 ml a week for 8 weeks, so that the skin was stretched slowly, though I must say it felt quite brutal at the time! I am on a months rest now, before seeing the surgeon again to fix the date for the expander to come out and the permanent implant to be put in place. Some tidying up under my arm will also need to be done then. I will also need a lift and reduction on my non BC side, and I am unsure whether I should have that done at the same time or not. (Bigger op versus yet more waiting).
Its a long process and I wish everyone all the best with their decisions.
Jojo
Am scheduled for the biopsy tomorrow and will get the results on Wednesday. The hospital have pulled out all the stops as I am going on holiday in two weeks and wanted to know what I will be dealing with when I get back.
my consultant is fairly sure that sit is a return of DCIS - let’s hope it is no worse than that.
Is tram flap different to DIEP FLAP RECONSTRUCTION? ?
Hi Jeannie reddin
With a DIEP they just use skin and fat plus the blood vessle. With a TRAM flap recon they also use a piece of muscle from your abdomen which means they have to put a piece of mesh to prevent potential hernias. I had a TRAM because I’d had an appendicectomy years earlier and that had spoilt the blood vessels they needed. I know a lady who had the DIEP and she was amazingly recovered after only 3 weeks. It took me months because of the muscle, and I can’t deny it is a very big op - took 9 hours and I was in hospital for a week. Despite this, it was the best thing for me and I’ve never regretted it for a minute. The result is amazing.
The other things to mention is that you need plenty of spare skin and fat, so I had to gain wait ready for the op, and I was advised the DIEP or TRAM because I’d had radiotherapy. But I know some people have had it but still have one of the others. Oh, and I couldn’t have immediate recon because of the radiotherapy but if you’ve already had that a long while ago I think you probably should be able to have the recon at the same time, but obviously your team will be able to advise you.
Have a look on the BCC website. They explain all the different types. Also, I remember seeing a thread and looking through it for different people’s experiences.
Best of luck.
X