I think it is probably best to go with how you feel and I thought the NHS would do mx (especially after two failed WLEs). I started with intermediate DCIS on one side and I wanted mx but was persuaded to try WLE because the consultant was keen (and as everyone below has pointed out long term outcomes are similar). My feeling was that if margins were not clear you would end up with two ops rather than one. Also saw some research about likelihood of future mammograms on WLE side leading to more biopsies etc because obviously they would want to check any sign of problems. As it turned out did not get clear margin at which point I opted for mx. Afterwards I was told this was a good decision because mx revealed extensive areas of surrounding cells were in the process of changing so unlikely there could ever have been 'clear' margin. A few months later (largely through luck) high grade DCIS was found in my other breast.This time I chose to go straight to mx - again proved to be a good decision as mx revealed invasive cells which had not showed up on mammo/u/s or biopsy. Nodes were clear but had to have more treatment to try to prevent recurrence.
I did have confidence in my surgeon and I understood why he wanted to try the WLE but obviously with hindsight I wish I had gone with my gut feeling and only had one op not two on the first one - he was happy to go straight to mx on the second one. Probably also shows how hard it is for the medics to be sure what is going on - both times the results of the mx were unexpected.
Best wishes with your decision Cocolily - hope you can get what you want. Good luck with the ops Tibetone - I found out at a late stage that there is a considerable history of breast cancer on one side of my family. If I had known at the time of first diagnosis I would have wanted to do what you are doing. I did not find ops/recovery too bad (I did not have reconstruction) so I hope it goes well for you too. I don't have BRCA either but like you they think there is a genetic link and I have just been asked if I would be happy to participate in a research project to try to identify more rogue genes - let's hope it succeeds!
Thought I'd add my experiences here too.
I was diagnosed in Nov last year with high grade DCIS about 6cm x 3cm and another area nearby of LCIS.
One consultant told me it was in the hand of God whether it would recurr and talked about 5 year survival rates.....
Another told me that with the high grade DCIS and LCIS I'd a 50% chance of cancer in the other breast which seemed too high for me. He recommended double MX as this would reduce my risk to 5%.
After much thought, research and consultations have taken the decision to have double MX in 3 weeks time.
My reasons were that I was concerned re getting clear margins first time round etc,how much breast would be left and also chances of recurrence. I decided I didn't want to keep chopping away to get clear margins and also as there is strong family history I was concerned about recurrence. Despite testing negative for BRCA the consultants felt it was gebetic, just a question of finding which gene.
Felt comfortable that this is the right way forward for me but now the day approaches I'm having wobbles.
Know I am lucky it is early, treatable and have the option to choose double MX but absolutely dreading the operation and recovery.
Understand the worries about getting clear margins and felt this was my only option. But ask me on 29th May when the op has been done. Love to you all on this journey xxx
Hi had mx and immediate recon with strattice privately. However this was mainly because the strattice is not available on NHS in Oxfordshire. My NHS appointment for surgery was 3 days after my private op. The plus points from what I have seen of NHS vs Private are as follows:
1. private room - I spent 3 nights in hospital - and was able to sleep. This is the main plus!
2. The care whilst in hospital is good. And your surgeon will visit daily even at weekends!!
3. Visiting is whenever you want and as many as you want or not!
4. Follow up appointmentswith surgeon can be on Saturday - very helpful when you are working.
The not so good things:
1. Aftercare - there is no access to a Breast Cancer Nurse. There was a Specialist Nurse but she was part time so was hardly available. Once you are home there is no emotional support, no one to ask questions etc.
Hi Cocolily - I have sent you a private message x
i was NHS too - so chose wle against my consutlants wishes (but he was right in the end) so with hindsight and the knowledge I know have i would have gone for Mx first time round if it happened again. I do think you can say that you would like an Mx rather than wle -but then it all depends on whether you would like reconstruction or not - have you thought about that? You can chose either immediate or delayed. Sometimes an emmediate is not an option due to your hospital/surgeon etc and/or you may have to have rads and then they sometimes think its too much of a risk. If you its delayed then you will have to go on a Plastic surgeons waiting list and they usually like you to wait a few months for healing etc. I would talk to your BCN if you have one and discuss your options - but yes the helpline here will be able to tell you what you should expect and what the NHS has to deliver. xx
it is a hard one to advise on as it is so personal. I am aware that the stats say that as long as the cancer is cut away and clear margins then WLE and MX have the same recovery/reoccurance rate so its not simple or straightforward and a lot depends on the stage and type and aggression of cancer too and the size of your breasts. - so there is no easy answer. My initial gut feeling was to go for WLE as i wanted to preserve my breast and nipple - that was against my surgeons advice who wanted to go for Mx straightaway. Anyhow the inevitable happened and no clear margins so the second time round I went for Mx - He got clear margins but my tumour was 9cm I then went on to have chemo. You are having chemo first to shrink the tumour so your tumour will be much reduced and another WLE is possible and you will keep a reasonable body shape. At the time your thoughts are probably on the cancer and get it out of your body but you do also need to think about the future and what your breast will look like and will it be deformed? The questions you need to ask yourself is will you be content with a WLE or will your be questioning yourself thinking that you should have had a Mx for peace of mind? The other question is about body image - how important is it to you? If you go for a Mx you can have a reconstruction but with a WLE this is not the case so again what will your breast look like after 3 WLE's. I had a delayed diep and am so happy with my new breast - it was 18 months later but well worth the wait. Good luck to you and hope you get lots of responses to help you on this xxx