I was diagnosed with intermediate grade DCIS a few weeks ago. Because my blood doesn’t clot very well, my case has been transferred from Norwich to Addenbrookes in Cambridge. The DCIS was picked up through a routine mammogram, and I got the recall letter over 9 weeks ago. It’s a long time to wait for treatment - if any!
I’ve been told that all the suspect cells may have been removed in the core biopsy (all the calcifications were), so I might be fine now. BUT they really recommend surgery, and as I’m small a lumpectomy might be too disfiguring, so I might rather prefer a full mastectomy! The diagnosis and treatment options seem so mis-matched, I can still not really believe it. I go to Addenbrookes tomorrow - supposedly to make a decision. Dare I leave it and monitor very regularly?
I’m horrified at the visual effects of surgery - I’d choose reconstruction as soon as I could, but it all seems almost unnecessary…Any views out there? Help please!
Dear Tarajane,
I was diagnosed with DCIS last March following a lumpectomy which left me asymmetrical (I had small but perfectly symmetrical breasts).
The doctor then suggested mastectomy and I resisted the idea for some time, getting second and third opinion. In my case it turned out to be a correct decision, as more areas of DCIS were found during mastectomy, and some were high-grade too. I do not mean to scare you, my DCIS was multicentric so the doctors had good grounds to suspect there’s more out there. From what I gather in many cases a lumpectomy is enough.
I had immediate reconstruction, which is common with DCIS, have you not been offered one?
I hope this helps a little.
Wishing you all the best,
Jelena
Hi Tarajane,
I just wanted to wish you well.
I can’t advise as I haven’t faced this decision, and I wouldn’t dare tell anyone else what to do, esp as you’ve never met me!
I guess the “ultimately sensible decision” is mastect and reconstruction. I will admit I watched a reconstruction a few years back and it really is incredible.
How do you feel about it yourself?
I hope you don’t mind me asking, but what were your symptoms?
I’m being monitored for blood nipple discharge, yellow discharge from one nipple only, and haven’t got a diagnosis yet. Trying to decide what to do for the best, much like you.
I’m thinking of you.
Thanks for the messages so far - it really does help. I had, and still have, no symptoms whatsoever - just a few calcifications showing on the mammogram.
Yes I suppose the ‘most sensible’ option would be mastectomy; it just seems so drastic for almost nothing.
Screening and early diagnosis is obviously a great thing, but the treatment options are still fairly major.
Sorry - but it’s good to put frustrations down on ‘paper’!
Maybe you need a second opinion…
Hi Tarajane
thinking about you and wondering how you are getting on at Addenbrookes. Your thoughts really struck a chord with me - a mastectomy for a few calcifications seems drastic. Lets hope you’ve got some good info. from the hospital on which you can base your decision.
I had biopsy for calcifications 2 weeks ago today. Still waiting for results - and there lies a tale, because there is loads of confusion about how those results will get to me. And more to the point, WHEN I will get them. Thats another story - I’ll post elsewhere if need be.
Hope to hear soon how you got on today.
Hi to you all
My dcis was picked up as calcifications on routine mammo, went back for scan, radiologist couldnt make up his mind and decided that i needed sterotactic biopsy, very painful and lots of bruising waited two weeks for result as consultant away on holiday!!!
Was told that I needed masectomy, but almost 99% certain that I would not need any further treatment, but when I rang bc nurse she told me that I was having sentinal node biopsy as well, then saw consultant again who offered reconstruction at same time, which I have declined, and decided to have a falsy, the op was then booked for 4th oct, then a week later they rang me and told me they were brining op forward to 28th sept, I now go for pre op on wednesday, and in at 8 am on friday for masectomy. Its all really scary and as it gets closer I am getting more and more frightened of the whole thing.
Hi Sweethart and Tarajane
I was diagnosed with high grade DCIS in August this year after calcifications showed up on my yearly mamao check.They do look really tiny like snow specks and you wonder how such a few small dots can have such consequences? I know it is really hard to get your head round this.
Anyway - I have had full mastectomy with nipple gone 2 weeks ago and it looks amazing (read the post with LizzieT in younger women section on mastectomy and recon - it is a bit long but will give you the ups and downs of the op). It is a really hard decision as what to do but in the end I was just led by my consultant. He gave me no option but to have a mastectomy and personally I wanted immediate recon.
Tara - I know it seems a really drastic solution - so if not sure gets lots of correct information. Sometimes it helps to think what you would advise another woman to do?
Sweetheart - good luck and lots of love for Friday. It is scary but you will feel much better when op is over as that part will be done.
Take care girls
Sarah x x x
A long day at Addenbrookes, but they were very straight, kind and thorough. My biopsy in Norwich was 6 weeks ago,and after 2 weeks the marker clip fell out (due to my excessive bleeding problem). So the surgeon in Norwich said he’d have to remove a larger area than normal as the precise site wasn’t no known.
On that basis I’d reluctantly convinced myself to have a mastectomy with immediate reconstruction. But then it all changes again … what a rollercoaster of emotions…
I still have a bruised area inside from the biopsy, which they saw on the ultrasound at Addenbrooke’s so the surgeon is confident he can still locate the actual site. He said that mastectomy is ‘overkill’, and leaving and monitoring is absolutely not an option - Not because of the present stage of DCIS but because you just never know if / when it could turn into something worse.
So - I’ve said yes to a ‘lumpectomy’ (of the site not a lump!) at Addenbrookes next week, and possible radiotherapy later in Norwich. Addenbrookes can monitor my clotting problem better. I just hope it can REALLY all be cleared this way. I suppose there are no 100% guarantees but the surgeon says ‘as near as’.
I so don’t want to do it - I will have a golfball sized dent on the top inside corner (and I’m only 36A!). But I know I just have to.
I’m so lucky for it to be at this very early stage.
I’m also lucky to have had a 2nd opinion without really asking for one. I think you need 1, 2 or 3 different slants on it all to make sense sometimes
sweetheart - I hope things go well for you - it’s just ridiculously hard to get your head around it all. I wish medical science could target treatments mor finely with such a ‘small’ problem. One day I suppose…
Tara
Hi Tara, you may not have a dent. I am a B cup and when I had my lumpectomy my surgeon moved breast tissue up to fill the gap - a sort of breast lift, so ask if they are going to do this.
Take care
Sarah x x x
Oh thanks for that!
I’ll certainly ask him.
Isn’t it great to be able to ‘talk’ to people who’ve been there or are going through it!
Tara x
I had a lumpectomy for DCIS and a tumour and that was four years ago. If it’s in one place they now do this in a lot of cases depending on the views of the person. Sometimes the DCIS is widespread or in an awkward place though, or high grade. Mine was low grade
Mole