Breast Cancer Now Forum

Hi again - yes I'll keep asking the questions. The evidence does seem inconclusive with DCIS and infact elements of what some feel is over treatment. I'm going to get my pathology and take some advice around oestrogenic diets and canabis oils. I have too much family history of strokes, heart disease, blood clots, DVT amongst other concerns of a major systemic hormone therapy drug to consider tamoxifen on what feels not very strong arguments. However I am willing to listen but my BCN said that my surgeon had suggested it as a prophylactic and not required treatment so that is my choice. She also said that she feels the surgeons feel that they have to offer something for younger women with larger affected areas with some high grade DCIS and this is what they have. On a positive I'm in day 27 post mx and DIEP and managed to walk round the shops for half an hour and get a pair of jeans on! Small steps for positive mind! Px ... View more

Hi again - went back to clarify with my BCN and she confirmed that they don't test DCIS and therefore don't know hormone receptors but surgeons recommend tamoxifen due to my age and area affected 9cm. I've asked for my pathology results and she is checking with surgeon that is ok!! I told her that at this stage without further information I want prepared to start any hormone therapy. I'm based in Norfolk and wonder if it's different in other areas of the country. Now very confused as this seems to go against everything I'm reading. ... View more

I can see the temptation with that! I think because they are suggesting tamoxifen and I'm not keen until they persuade me otherwise - I'm also going to start an oestrogen reduction diet. I'm looking forward to being 5 months post surgery so I can have start my nipple reconstruction! ... View more

Hi I'm 21 days post et mx and DIEP reconstruction for DCIS diagnosis. I was in hospital for 5 days and left with all drains removed. I've needed full care for the first 10 days at home but I've had a DIEP so not sure what your recon is? I can't fly for 8 weeks due to DVT risk from such extensive surgery and I have weekly dressing appointments for a few more weeks yet. However, at week 3 I'm now almost upright and can walk about the house and in the garden with only very limited help. I do hear of some getting seromas after a few weeks and I had one after my sentinel lymph node biopsies but so far so good. A slight different situation but hope its of some help. Good luck with your treatment xx ... View more

Also mx pathology showed no invasion or micro invasions from the DCIS. ... View more

Hi I've just had DCIS diagnosis, rt mx and DIEP and have just been asked to take it but haven't been given my pathology results just suggested to take it for 5 years as a adjunctive.. At the moment I am in the not going to take it mind frame until they give me more information that shows me that it will be of benefit in my particular situation. I also had my sentinel nodes all clear prior to mx and reconstruction. Keep us posted with what you choose to do, and I'll likewise. X ... View more

Hi Gail - I'm sorry to hear of your diagnosis, I am 47 and was diagnosed in March and have just had mascetomy and DIEP reconstruction. I remember how frightening and confusing everything is and how fast things seem to move in the first few weeks. I was referred to a psychiatrist to help me think through decisions and just talk with someone about how I felt rather than about the actual BC. My friends hairdresser has been blogging from her diagnosis on Facebook - Laura's breast cancer journey - she's inspiring and has been through the full experience -about your age too. Perhaps have a look at her page and see where you will also get to! She's about to start a fundraising Iceland trek with Coppafeel. Take each day at a time, don't over think and ask every question you can think of - all your feelings are ok. Keeping abreast also a younger support group which has some amazing women just like yourself to get in contact with. Stay positive and one step at a time. Xx ... View more

Hi Liz, thank you, really helpful And you've just added a couple of questions to my growing list! I'll check from my original Biopsy whether hormones were checked with my BCN. I'll also check in the margin but I'm pretty sure my margin is clear but I will ask again! Please Keep me posted and I'm really interested if I'm not tested for hormones because Different areas are different. And thank you, best of luck with tomorrow ... View more

Absolutely - I was luckily referred to a psychiatrist as I found the whole experience a whirl wind and too fast. This was a real lifeline for me and can't say how much this little bit of time and extra help with my own thoughts and not just the diagnosis was so important. Hang in there, time really does make a difference. ... View more

Hi - just came across your query and although I haven't heard of the test - is it in U.S.? I'm in week 3 from a mx and DIEP reconstruction for DCIS. I got my pathology results today and it's non invasive, already knew it was high grade and large area confirmed plus had sentinel nodes done for the immediate reconstruction. They are recommending tamoxifen as preventative which I also hoped to avoid but haven't tested hormone receptors and I want more info and saw your test reference and wondered what progress you'd made since your earlier post. I hope things are getting there for you. ... View more

Hi Kat - so glad to read your story, I'm in week 3 from the exact surgery with a DIEP, it's tough but everyday 100% improvement and got my pathology result today was 9cm high grade in areas and other activity - whatever that meant! But thankfully No invasion but they still recommending tamoxifen - I wondered what you're experience was - if you do t mind me asking? ... View more

Hi Clare - I had the same in April and I'm now at the beginning of week 3 post surgery with immediate DIEP reconstruction. My care has been amazing, take all the help and advice and importantly allow the TIME that you need, you can be referred to a counsellor if it feels too overwhelming and help you think about options and processing. I've just had pathology results with no micro invasions - i had my sentinel lymph node biopsies a few weeks after the initial diagnosis as knew I wanted to ensure immediate reconstruction was an option for me. Payhology came back as a larger area than the already large area and highest grade that were confirmed from the previous biopsy. Stay positive and you have options and there is light at the end of this. ... View more