I’ve noticed that on some websites and in some literature DCIS is referred to as pre-cancer and as such seems to be considered minor. Does anybody else feel the same way?
Hi there
I have DCIS and asked my oncologist about it. The cancer cells are there but they are contained within the breast tissue and haven’t spread anywhere outside the breast. Therefore by removing the cancer cells and the surrounding area, the condition is cured. That is why is known as a precancerous condition.
I think though DCIS should be treated with some respect because in theory it can be cured, in practice, this means ensuring all the contained cancer cells are removed by surgery and radiotherapy. It is not a benign condition and it has the potential to kill if not treated. How I think about DCIS it is that I have something that if isnt treated properly may go on and become proper cancer, but I also feel very positive that it will be cured and I wont get cancer. Does that make sense?
Cathy
Hi cathy and trumumshow lol
Yes it makes perfect sense i had surgery two weeks ago to remove 6mm of DCIS and have just just gone back today for the results of the surgery to to be told that as the surgeon found more than 30mm of DCIS in the breast while operating has suggested that i have a mastectomy as it will be more likely to become invasive at some stage if i dont… and i was told as they are aware its only 6mm so it will be a case of removal and radiotherapy…well its now so different since surgery.So as it stands and from all the research that i have done over the last few weeks and talking frankly with my breast nurse, that DCIS is early stage breast cancer and should be treated as so,the good news is [if that is the right phrase] is that if its removed completely before it becomes invasive there is an excellent chance of recovery remembering that there are the grades of DCIS that are Low intermediate and high, and high being the more likely to become invasive if not removed…i hope this helps as it was quite a shock to me to find that from the biopsy and ultrasound,and 6mm in 2 months my DCIS was now 31mm at the surgery stage, and i am now talking about mastectomy and not radiotherapy and 6mm as i was at the diagnosis stage…DCIS.minor? no not at all…
love to all
Liz x
Hi Mylittlegems, I’ve been told I have 6mm of DCIS. I’m worried that there is more than that in my breast and I’m sure that my Consultant is too. I had LCIS 2 years ago. My routine Mammogram in January showed increasing microcalcification so I had another Stereotactic Core Biopsy which showed more LCIS, sclerosing adenosis and radial scar which is why I had to have another WLE as my Consultant felt it was inconclusive. The Histology report showed DCIS within the radial scar which is ER Positive, PR Positive and HER Positive 3+. I’m being referred for a 2nd opinion to help with my decision making.
hi there
Try not to worry easier said than done i know i was told that they dont have an exact idea how quickly DCIS grows but again depends i guess on the grade and the tissue surrounding it whether its healthy or not well this is what i have concluded with my senario anyway as everyone is different.
I understand exactly how you feel and now i am still in shock myself,after having a 6mm DCIS from initial mammogram and ultrasound xray etc then a 31mm during surgery to be told that the surgeon saw more than thought so neatly sowed me back up to tell me that!!.. also not sure what PR positive PR an HER positive etc means, guess i need to brush up on my medical terms or they are not explaining too well, and could i ask you why are you being referred for a 2nd opinion to help with your decision making?..when is your appt?
Liz
Hi all
I had high grade DCIS and mastectomy/reconstruction almost exactly a year ago and am just about to go in for my second “tidy-up” operation. I am basically fine about it all and as relaxed as you ever can be now. But all came as an absolute bolt from the blue and I agree it does knock you for six. The doctors decribed the histology results to me at the time, which of course I didn’t really take in, I just listened for reassuring words and their overall advice. They offered me a copy, but like an idiot I didn’t take them up on it. I wish I had now - I was too busy being upbeat and confident and ‘let’s get on with this and get it sorted’. So push them harder to explain Liz.
Main point of writing this is to say have you discovered the US site (breastcancer.org) and in particular this terrific lady called Beesie, who comes from Toronto. She posts a lot on the DCIS boards and she is wonderful at explaining all the medical terms and tests in an easy to understand way. She seems to keep up with all the research and be very knowledgeable, but she is not in the least alarmist. I bet she will have posted answers to lots of your questions.
Lots of hugs to you all
Jane
Hi
I have posted a link to the Breast Cancer Care publication on DCIS, some of you may find it useful to read:
breastcancercare.org.uk/docs/ductalcarcinomainsitudcisoct05_0.pdf
For further information and support please feel free to call the helpline on 0808 800 6000 which is open Mon-Fri 9am-5pm and Sat 9am-2pm.
Best wishes
Lucy
Thanks Jane
Good to hear your bearing up a tidy up??
It sounds just like i felt friday i just sat there being all brave and all and didnt know what to say or ask and its now three days later that i feel overwhelmed by it all as i dont know what is 31mm.how could they not have seen it from 6mm 2 months ago when i had the ultrascan and will ring them tommorow and find out more with the decision of the mastectomy reconstruction etc it all seems to be a lttle daunting and yes your right push harder and i will…
Thankyou for the site jane also you think you have exausted all the avenues of research and then theres somewhere else to get information and as they say at least it should give you the knowledge you deserve.
Thanks also lucy a great help
Love and hugs
Liz xx
Hi Mylittlegems, My Consultant felt it best to get a 2nd opinion as she understands that it is difficult to come to terms with having a Mastectomy for something that appears to be non life threatening. ER positive means it’s Oestrogen receptive, PR positive means it’s Progesterone receptive and HER Positive means the cells are HER2 receptive. Don’t have an appointment yet, am hoping I can be seen this week.
Hi again thetrumumshow
Thankyou that is a great help i really do understand and im thinking hard myself what is the best thing to do and will be making a decision this week after talking to a few more people it is a very difficult thing to have to think about as well as everything else that we have to deal with and the waiting game i hope you get an appointment this week
love and hugs
Liz
Hi Mylittlegems, STILL not had my 2nd opinion!!! Bart’s was offered to me as the place to go for a 2nd opinion by the Royal Marsden who say they’ve sent everything Bart’s need. When I phone Bart’s they say they’re still waiting on stuff… I can’t seem to get a straight answer from anyone. Here it is April 11th, no sign of an appointment and I have an appointment on the 22nd back at the Royal Marsden to tell them what my decision is based in the 2nd opinion!! I COULD SCREAM!!! Sorry, just had to get that out of my system.
I am afraid they always seem to lose things transferred between hospitals. I moved over to Barts from Newham General to Barts Hospital. On the day of my first appointment, the staff at Barts said they didn’t have my notes, even though I rang up two weeks earlier and asked staff at Newham General to send them on. In the end, they didn’t arrive until the day of my surgery when after my operation, a nurse gave them to me to take home with me. They made interesting reading for me, but obviously no doctor had bothered to read them since the surgeon I saw blithely told me I’d not need any followup after surgery. Then I found out I had cancer.
A couple of years later I got University College Hospital to send some bone scans they’d done of me to Newham General. Newham General claimed they hadn’t arrived three weeks later when I had my back ache consultation. I was very sarcastic as it only seems to be in the NHS that post disappears down a big black hole. I made a complaint, they soon found my scans. But by then I was totally pissed off with the lot of them. The main problem seems to be they don’t use computers or scan information in and the admin staff are few and far between. Bits of paper fail to get on the relevant files
Hi thetrumumshow
Sorry to hear your dilemma…its something you dont really need right now
I thought about a second opinion but knew that really at the end of the day after all my research etc, on DCIS and of course everyones different, that because of the extent of the dcis, that eventually i would end up as a jigsaw puzzle in the breast region and all that surgery in and out etc, if they couldnt get it all and that is a likelihood also and then the higher risk of the DCIS becoming invasive time etc,it is the best thing to have the mastectomy for me anyway, but its not the same for everyone and it does not make it any the less difficult for anyone as cancer starts somewhere, it can be aggressive, and progresses if not caught in time…some of us are just luckier than others if thats even the right way to express it…im with you all the way as its not until your here that you really know what a complex disease it really is
let me know how it goes and good luck
with love and hugs
Liz x
Hi Everyone
Have’nt been on this sight for ages but feel I need some advice from people who have had DCIS, I am on Tomoxifen after having a high grade DCIS removed just over 18 months ago the problem I have had right from the start and still have is that I feel so tired all of the time I have test done to see if there is any other reason for this but have all come back negative,just wondered if anybody else as the same problem as it is really beginning to get me down,before I had by cancer I could do anything now I struggle to stay awake for the morning in work and I seem to go to bed earlier and earlier and sleep like a baby but get up as tired as when I went to bed.
Thanks for listening
June
Hi June,
I’ve been on Tamoxifen for just over a year now and without any word of a lie, I can fall asleep at the drop of a hat.
I only work part-time which is hard for me, but it’s only mornings so I can cope, but once I’ve made tea and I sit down to watch TV I find myself asleep within 5 or 10 minutes.
I too had a word with my GP, he really didn’t know the full answer and I too had Thyroid tests…etc done, but apparently I’m functioning very well…it doesn’t feel like it though.
I had bags of energy before DCIS and even after my Mastectomy I was quite well, then as soon as the Tamox kicked in, I just feel tired all the time.
I have spoken to quite a few ladies on Tamox, some way down the line of the five year span and all say the tiredness doesn’t wear off…eventually…
Sorry can’t be of more help, but you’re not alone in feeling like you do…
Linda
Hi to you all
Glad people are realising that Dcis is a very early form of breast cancer. the docs originally hinted at the possibility of somecells in years to come turning into a cancerous form but i wasnt really prepared for the diagnosis or the treatment offered. Found it all very scary at the time back in jan this year but have had to wait for scans etc to check out other side and now am waiting for mast and immed recon on left side only. did initially think all the info given at time of diagnosis was a bit much but can now look back and reread it with better insight. never considered a 2nd opinion and trust the docs to advise on treatment that is best for me. keeping positive that it has been found and is treatable and surgery is preventative.
we all deal with it differently but our feelings are similar.
doreenxxx
Hi all
Just checking in after a while had mastectomy 6 lymph nodes removed and recon three weeks ago for high grade 60 mm DCIS…which started when found in feb at 6mm, and home now just waiting for results, its interesting that the tiredness lingers so long but having been told that its such a major op and have gone through it, and realising what your body goes through, and that everything that goes in when your in surgery, morphine, general, etc stays in your body for months, so i guess that could be a factor to the tiredness too. but WOW… it does hit when you are such an energetic person, to become this walking zombie by the late afternoon…well thats me anyway and im not as yet on any drugs or chemo!!!..dread to think!!
love and hugs
Liz xx