DCIS - has anybody else been diagnosed with this?

Hello everyone,

I've just joined this group today, but feel a bit of a fraud because I was diagnosed with DCIS rather than an invasive cancer. I know I'm very lucky that this thing was confined to my milk duct.

Has anybody had any experience of DCIS? I'd never heard of it until I was diagnosed with it. I've seen slightly differing information about it online. I gather it is regarded (luckily) as Stage 0, hence my unease for bothering you folks.

I'm still recovering from a lumpectomy back in April. I have large boobs and was massively bruised and swollen - the WHOLE breast was aubergine colour for a month and really misshapen! Very painful too :-/

2 weeks ago I started bleeding from the surgical incision. It was determined to be old blood from the operation. A week ago I was literally spurting blood everywhere via the same exit wound, which had me being rushed back up to hospital to a post-op unit for assessment.

They diagnosed a massive infection and put a drain on the breast, and prescribed powerful antibiotics which I'm still taking. Have been under the care of district nurses. Things have improved greatly, although the nausea has yet to pass.

I've suddenly felt energised this past day or two (a miracle, because I also have fibromyalgia and rheumatoid arthritis!) and so have been catching up on much-neglected jobs around the house and garden. I hadn't realised just how poorly I'd been feeling until a couple of days ago when it suddenly dissipated. Always the way, eh?

I've now been referred back to the surgical unit for them check all is ok, before they speak again to the Oncology Dept about radiotherapy (the mass they removed was high grade). I've been told this infection will probably delay things with Oncology. From all I've read, it is likely I'll have radiotherapy as a preventative measure.

My surgeon elected to do the lumpectomy rather than a breast reduction, due to my health, but I must admit to regretting this course of action, given what's happened this past fortnight. Recurrence appears to be about 25% which is usually an aggressive form. My surgeon could have reduced that likelihood by about 50% if he'd gone the other route!

I just wondered what anybody else's experience of DCIS has been and how their treatment has been approached. Any useful information gleaned from medical appointments rather than the internet?

Thanks for listening. Sorry to trouble you.

Sammi

5 Replies

oldestnewest
  • Hi Samni

    I was diagnosed with high grade DCIS and given the option of a lumpectomy or mastectomy. From discussions with my the out comes for a lumpectomy with clear margins and radiotherapy are on par with a mastectomy. With high grade DCIS there is a 20% chance they may find tiny micro invasions within this area. High grade DCIS if left untreated has a high chance of becoming invasive cancer which is why lumpectomys etc are done. But DCIS is not invasive cancer and therefore not life threatening as it can't travel around the body.

    It's still a lot to go through invasive or not! The process of diagnosis and operations and treatment can be physically and emotionally exhausting! You are in the right place xxx

  • Thank you Marie. Yes it is alot to go thru. It has been a gruelling time. As I live with fibro pain all the time, the added burden has been a challenge :-/ I hope that came thru yr own experience in good form. I've had a couple of friends/family who've dismissed my surgery as nothing because it isn't full on invasive cancer. Well, the rapidly appearing trench in my boob and the remaining haematoma and stabbing pains are testament to an invasion nonetheless, not least the prospect of radio and daily 100 mile round trips for 3 weeks!

  • People can be very insensitive but well meaning in trying to play it down to ease your worrying. It sounds like you've had it rough. Have you been to Penny Brohn Cance Centre? Maybe you could fit it in with radio therapy dates? It's an amazing place, so tranquil and uplifting with so many pampering treatments on offer. You can attend residential courses, it really helps. Wishing you a speedy recovery with all the support you need.

  • Thank you for yr suggestion Rosebud, and your good wishes. No, I haven't been to the centre - it's a bit too far away for me to attend readily. It would be lovely to spend time in such a place, but I'm lucky enough to have a partner who makes life comfortable and is very supportive, including free massages, foot rubs and endless cuddles!

  • Hi Sammicat and thanks for joining community@PennyBrohn. At Penny Brohn we can provide a lot of information on self help techniques for managing fatigue, if you would like an information sheet, please do not hesitate to contact the Helpline, our phone number is 0845 123 23 10. Very best wishes Helpline.

You may also like...