I found my lump on 17/11, was diagnosed with Grade 2 mucinous carcinoma on 3/12 - 23mm. On 29/12 had a WLE excision and ANS (8 nodes). It was a traumatic time, I went back to theatre twice more that day as I had massive bleeding and my R breast was of Jordan proportions. Three GA in 12 hrs is no joke! The path results were mostly good. Still Grade 2 but mixed mucinous, IDC and DCIS. Smaller than thought 15mm and no lymph/vascular invasion. BUT DCIS/LCIS in medial margin. I had a re-excision on 24/1 but still DCIS/LCIS in margind so have now been advised to have MX. I have an appt with the plastic surgeon to find out my options as have been offered an immediate reonstruction but not sure I want to go this route? Any views?
As I have a family history and my Mum had bilateral BC I have been offered an MRI so there is still a possibilty that both breasts may be involved. My twin sister has been given annual mammograms since my mum’s 2nd diagnosis in 2004 but I have not (different PCT’s)and her family history nurse has suggested genetic testin So , stilla loong way to go before I know where I am!
If anyone has been in the same situation or can offer advice I would be very grateful!
Clematis x
Forgot to say. Lymph nodes clear so I know thats good news . Was originally told I would be in hospital over night. Ended up being 3 nights, then was told very unlikely (95%)that margins wouldn’t be clear after re-excision. It just seems to be getting worse at every step. Feeling very stressed!
Blimey, you’ve certainly been through the mill with surgery!
First of all welcome, and sorry to be welcoming you. You’ll find lots of very helpful people on here, and the helpline (number at top of page) is also very useful.
I haven’t heard of mucinous, and I’ve read LOADS in the last couple of months so I just googled it to see what it’s about. I see it’s pretty rare - around 3% of BC - but there may well be others on the forum who also have it who can relate more closely. Similarly there are quite a few on here who have BRCA gene mutations and they will also be along. You might want to take a look at the Publications section of the website to look at the BCC leaflets, they’d be a good starting point.
I’ve had an MRI though, so I can tell you what my experience of that was. In brief, it was a bit odd but not at all painful or distressing. No squeezing of sore boobs between hard plates! Be aware that MRI picks up ALL sorts of things, even perfectly normal and totally benign breast changes, so please don’t be overly alarmed if you are recalled for further tests following MRI. When I had mine I was called back and had another core biopsy, and during the week’s wait for those results I’d convinced myself I’d be dead within a fortnight. Turns out it was perfectly normal fibrocystic change consistent with my age.
Regarding lack of clear margins, when I had WLE I also didn’t get clear margins so had re-excision, and my surgeon said after that surgery that if we STILL didn’t get clear margins she’d be able to have a third go. Could this be an option for you? Obviously that’s something you’d need to discuss with your surgeon alongside all the other things, including the genetic bit.
I’m sure there will be someone along soon who can help with other bits.
CM
x
Hi Clematis
Firstly, welcome to the forums, I am sure you will find it a great source of information and support.
I’m sorry to read of your diagnosis, I’ve given here the link to our Resource Pack, it is specifically designed for those newly diagnosed. The pack has information to help you better understand your diagnosis, test results and the various treatments available.
breastcancercare.org.uk/heal … tionId/82/
Also, do give the helpline a ring if you need any further support or information. The staff are there to offer a listening ear and will be able to give you further details of any BCC publications which may be helpful. They are on 0808 800 6000. Open 9-5 Monday to Friday and 9-2 Saturday.
I hope this is helpful.
Best wishes Sam, BCC Facilitator
HI Clematis,
just to say that I found the initial post diagnosis period with the drip drip drip of new bits of info and changes in plans the most difficult bit - once I’d had my second op and results and had a real treatment plan I felt a lot better. Such bad luck having 3 GA in 12 hours, best wishes to you, Nicola
Thank you everybody. I see the PS tomorrow to discuss options so maybe that will help me decide about a reconstruction or not.
I haven’t been offered a re-excision, I think because the tumour was quite close to the chest wall. Having been through 2 ops, for what feels like no gain, I don’t think I’d risk doing the same again anyway. Went back to work today but it may only be for a few weeks.
x
Hi there Clematis - I have a similar story to you, but a G3 cancer was found, so it’s not entirely the same. I hope this helps.
I also had muconious cancer. Calcifications were found on a mammogram (I am 41) and thought to be nothing. AFter a stereotactic biopsy all calcifications were removed but one of the calcifications was cancerous. I had a WLE and sentinel node biopsy. From the sample it took they found extensive DCIS/a muconious cancer and a G3 4mm lump. As there were no clear margins and with one lymph node affected, I was advised to have MX with immediate recon then chemo rather than a re-excision which I did.
Beforehand I also had an MRI on both breasts, I was told this was mostly to check my right breast which was clear - it was difficult to see much on the left breast because of WLE surgery.
AFter my MX my oncologist said it was the right thing to do as they found another 24 mm muconious cancer G2 (they are not able to see these on mammos/MRIs or ultrasound).
I now have a highrisk family history as my mum was diagnosed 3 weeks after me. My aunt, grandmother, great aunt and great grandmother also had BC. My sister is currently very scared indeed and is having genes counselling.
I am very glad I decided to have MX and immediate recon. I had LD flap and I am very pleased with the results. I’m over half way with the chemo, which isn’t fun and then 5 year tamoxofen.
If you want any more info on the LD flap recon, please PM me or the publications page on this website has a good leaflet on breast reconstructions if this is the route you want to take.
Take your time in deciding what you want to do. Get as much advice from the experts as you can.
I hope this helps you a little Clematis, let us know how you get on.
Thanks pinkrose, this seems to be a rare cancer and behaves differently to others. Mine did show up on ultrasound but there is always the worry that something is there that didn’t. I had scattered calcifications too but was told they were nothing, maybe its part of how this type of tumour presents itself. I am glad now that I’m having an MX.
I saw the PS, am still undecided but know more now about my options.
I’m not suprised your sister is scared, I know mine is.
Hope everything continues to go well.
Clematis x