DCIS QUERY - CAN YOU HELP?
DCIS QUERY - CAN YOU HELP? Hi everyone
I have had a WLE and I have been diagnosed with high grade DCIS (apparently a small area of 21mm), in one area of the upper right breast. I have an appointment next week to discuss treatment plan etc. I was wondering if anyone has had a similar diagnosis could you let me know what treatment was offered to you. I know that everyone is individual but I would be grateful if anyone could offer their experiences.
Has anyone had a mastectomy when diagnosed with DCIS (small area).
I would be grateful for any replies
Thanks
Michelle x
Publication Hi Michelle
You may find it helpful to read the breast cancer care publication
on DCIS. I have included the link below:-
breastcancercare.org.uk/docs/ductalcarcinomain
situdcisoct05_0.pdf
I hope this helps
Kind regards
On-line Host
Breast cancer care
dcis Dear Michelle
A scan , mammogram and biopsy showed I had widespread, high grade DCIS, and mastectomy was recommended. The surgeon said there was a 50% chance that more cancer would be found during surgery, even though this hadn’t shown up in the tests. When I went back 10 days later for the results, I was told 17mm DCIS and a 22mm cancerous tumour had been removed. There was no spread to lymphs. I had no further treatment recommended other than 5 yrs TAmoxifen. But as you say, we are all different so you may be offered different treatment.
Good luck and best wishes.
Me again Hi Michelle
Thought it might be useful for you to know that none of my DCIS has ever shown on scanning…(see my profile)…luckily they found a minute bit on a duct they removed to stop my 18 month discharge…at that point i asked what would happen if they found any more…he immediately said you will need a mastectomy…when they then went back into remove further ducts it was throughout them and i asked them to biopsy my hardened breast area and it was in there too…i guess what im trying to say is in my experience at least it appears that once it occurs in more than one place the safest option is mastectomy…forgot to say that mine is all hopefully in situ and the lowest grade but they havnt even considered WLE!!
However my friends mum who had DCIS had 2 WLE and kept her breast followed by rads and is completely fine with 2 boobs still!
I guess it all depends on wether they get clear margins, the grade of the DCIS and and the lymph nodes!!!
Hoping you are managing to get through each day with this awful wait…what day do you hopefully get the news next week?
Love Anna x
DCIS I had a tumour which on removal they said was larger than 1.5cm with focal DCIS. I was advised to have a segmental mastectomy where roughly a quarter of the breast is removed. I had that. The rest of my breast is still there. They tested the margins and they were OK
My profile shows a picture of what my breast looked like about a year later
Shelly i honestly can’t remember what they said about grade etc. i had a 1 cm tumour so it had started to do things, and they couldn’t get clear margins so it was obviously throughout the breast tissue and the safest thing was a mastectomy. lymph node biopsy was OK though. i do worry a bit about the other breast…what if it’s in there too? how would i know? how would they know?..but i’m taking tamoxifen after initial reluctance so hopefully that will keep it at bay. i was bloody lucky because it was picked up incidentally when i got a cyst, the lump was too small to feel and the surgeon said the DCIS had probably been sitting there for years. i do find it hard that i ended up with a more radical operation than some folk whose cancer was “worse” than mine…but i was spared the rads and chemo that most of them had to have…let’s face it, none of it is much fun but it’s better than the alternative…keep us posted how your results go.
DCIS Hi, I found a small lump which was diagnosed as high grade DCIS in February of this year. I had a WLE with some of my lymph nodes taken. When the results came back it showed that the nodes were clear but that there was no clearance on the area removed so I had a mastectomy at the start of March. When the results came back from that op they showed that I had more than one area of DCIS with a total distance of 7.7 cm between the furthest points. I had both an ultrasound and a mamogram and they didn’t show anything which does make me worry about the other side, I have had an MRI scan on that and the results will be back next week.
I’m glad that I had the mastectomy and didn’t keep opting for a bit more being taken away as they may have got clearance on the one area of DCIS but not found the other areas. I opted for a tissue expander reconstruction at the same time as my mastectomy and that seems to be going fine.
For Debbie25 Hi Debbie
Thanks for your post. Fingers crossed for your results next week. I really hope that it turns out to be good news. Please keep me informed. It is scary to think that after your op, they found more DCIS even though it hadnt shown up on any scans etc. I have read that it is only usually high grade DCIS that shows up on mammos. You made the right decision when opting for mastectomy and I’m glad things seem to be going ok for you.
I am going to bear in mind what you have said as I have an appointment tomorrow (wed) to discuss my results about margins and treatment plan. It has been a long wait (3 weeks) as there was a delay due to easter and I just want to get it over with now.
I shall let you know how I get on. Thanks again - your post was really useful.
Take care love Michelle x
Hi Michelle
Sorry haven’t replied earlier, not been on line for a while. Hope things went well at your appointment the other day, let me know how you got on. I’m going tomorrow for my appointment and hopefully they will have the results of the MRI back, it is scary to think that I might have to go through the whole thing again but I suppose we just have to do what they suggest is best. I’ll let you know what happens.
Take care x
to debbie25 Hi Debbie
I only got my results yesterday as my consultant has been on holiday!! It was a relief to find out that it was just DCIS and that it wasn’t high grade as they first thought so no radiotherapy required (yippee). However, there was one margin which was quite close and he has therefore suggested I go back in and have further surgery to remove a bit more tissue in order to get a more reasonable clearance. It’s a little step backwards but, in the long term, it will give me peace of mind so I think it will be worth it as it would just niggle away at me in my mind!!
I also have to go on Tamoxifen for 5 years and be monitored regularly. It was just a relief to go and be able to get some answers and find out exactly what the score was (thankfully, it wasn’t anything too sinister).
How have you been and how did you get on at your appointment yesterday. I am really hoping and praying that your scan results were good news. Let me know how you got on and then I wil be able to uncross my fingers!!
Take care
Michelle x
Hi Shelley,
I had a lump removed in June which turned out to be lobular cancer, had to have wle, but results came back I also had DCIS with no clear margins but luckily no lymph nodes affected. Was advised to have bilateral mastectomy as with lobular cancer I was at greater risk (between 40 and 50%) of it developing in the other breast. I had the mastectomy in Aug 06, didn’t need chemo or rads just taking tamoxifen for 5 years and a monthly injection in the tummy for 2 years.
I have to say hearing the words bilateral mastectomy for me was horrendous but I am now looking forward to reconstruction due to take place on the 22nd May.
Take care and try to keep positive.
Sending positive thoughts
Kaz
xxx
Hi Michelle. I was wondering how you were getting on and see like me you are going back into hospital for a second op.
Hope things go well for you.
I had my 7th herceptin yesterday and it took the nurse five goes to get a vein. So I have some lovely blue bruises on my arm and hand. She is going to put my hand in hot water next time.
Just hope the veins I have left last out until December when I have my last herceptin.
Might see you at the hospital one day.
Best wishes, Michelle.
Hi Kaz42 Hi Kaz42
I just wanted to clarify the statistical risk you mention in relation to lobular cancer developing in the other breast.
Was the 40-50% risk a statistic that your medical team gave as a person risk for you?
I have spoken to one of our nursing team here at Breast Cancer Care, and they have said that Prof. Micheal Dixon in the ‘ABC of Breast diseases’ book states the risk is around 15-20% of women with a diagnosis of Lobular carcinoma insitu will develop breast cancer in the same breast, and a further 10-15% will develop an invasive cancer in the opposite breast.
He does go on to say that one possible treatment option is bilateral mastectomy ,just as you have had.
I realise that general statistics are very difficult to apply to one individual really, as so many other factors come into affect so just wanted to check out if you were told that your personal risk was 40-50% of developing cancer in the other breast or if you were told that this was a general risk?
best wishes for your surgery in May
BCC Host
Hi Moderator,
So sorry I haven’t replied earlier not been on this section of the site for a while.
All I remember the surgeon saying he suggested bilateral mastectomy because I was at 40-50% of it developing in the left breast. There is family history of bc both my mum and sister so whether that had a bearing on it i don’t know.
Sorry I can’t help any more than that, also I’ve had my date for the reconstruction and its next Tues 22nd May
Kaz
High Grade/DCIS Hi
I had WLE 3 weeks ago and was told that I had high grade but everything was taken out and everything was ok. Not been prescribed any drugs but I am being referred for Radiotherapy.
Viv x