cancer or not

cancer or not

cancer or not there is so many things you read about dcis is it or is it not cancer when I was diagnosed 27th july I was also told it was dcis but purely contained in the ducts I also had wle in Aug when I went for the results was then told they had not got clear margins and had also gone invasive I am now having to go in again next week for another wle and some lymph nodes removed
so have I or have I not got cancer?
and to the point why did women who had dcis lose their breast if they did not have cancer
sorry it does’t make sense to me

cancelled op Hi
Feeling terrible - was diagnosed in July that I had DCIS, underwent 2 biopsies on right - one definately DCIS the other they weren’t sure about. So booked in for WLI and diagnositic biopsy on 4/9. went to have wires put in before op and the radiaographers couldn’t locate the areas. Now waiting for biopsy on third site - I have resigned myslf to the fact that I think I will need a mastecomy. The waiting is terrible… Anyone gone through the same?

hi As far as I was told DCIS is cancer but is confined to the ducts of the breast. I had it throughout my breast and was told I had no option but to have a mastectomy.
Susan I think you are right to think you will end up with mastectomy, I had two stereo biopsies to locate areas and I can honestly say that the tests were worse than the mastectomy.
Good luck
Suex

not proper cancer? I think this is a very comon problem - I had/have DCIS and it’s a malignant tumour and if a malignant tumour isn’t cancer then what is it? It sounds an awful thing to say but one can almost feel like one is making a fuss about nothing when you’ve ‘only’ got DCIS. But if it isn’t serious and it isn’t cancer then why am I having to go in for a second op to get ‘clearance’, have chemotherapy, radiotherapy and hormones? Yes we are the lucky ones because it hasn’t spread and many of us don’t lose our breast and our prognosis is really good but we still have to go through a lot of the same stuff to be sure it will all be OK. Thank goodness I checked my breast because my 2cm lump didn’t show up on the mammograms (and I’ve had them regularly) at all even though you could find it with the tip of your finger by the time they operated.

Hi,

I too have had DCIS and just finished 5 weeks of radio therapy following WLE.

I was told by my Oncologist that DCIS is a pre cancer - or Stage 0 Breast Cancer. We have the treatment to try and prevent it turning into invasive cancer and thus putting our lives at risk.

thanks all thank all for answering this post
bit confusing to say the least
I can only assume now that surgeon has told me that from being first dx as non-invasive and then having op and after results has now gone invasive as the cancer has pushed through the ducts into the breast tissue ,so I guess thats the need for the 2nd wle and the reason for checking lymph nodes .anyway will keep you posted let you know how I get on .got letter this morning to say I’ve now got to got in 12th sept instead of 13th sept

Hi,

Good luck to you for the 12th.

At least it looks like it has been found very VERY early indeed.

All the best

GeorgiegirlXX

i had never heard of DCIS until my own cancer was diagnosed…there were calcs on the mammogram but nobody really said what that meant, i had a lumpectomy plus the carry-on with the wires which was not a bundle of laughs…but then it turned out that the margins weren’t clear. i’ve had three further WLE’s but the DCIS is widespread and i’m going in on Monday for mastectomy and recon. i agree that the waiting for results is the worst bit, i went nearly insane with anxiety each time, and each time it was such a huge disappointment to hear that the margins still weren’t clear. people are saying how awful it must be to have been through four operations and end up with a mastectomy after all…but i know that psychologically i couldn’t have accepted it until i knew there was no alternative. i think it’s very hard to accept the removal of a body part that isn’t hurting you or making you feel ill, that looks absolutely fine on the outside, for something that you can’t see. however the good news is that i won’t now need rads, so every cloud and all that…

catkin19 I also had never heard of dcis until I was diagnosed which I must admit took me by surprise as its something I very rarely thought of .
I had wle in Aug ,I then went for results last Monday which I was all prepared for the surgeon to tell me all was ok,
but that wasn’t to be, what she did tell me was that the cancer was now invasive as it has started pushing through ducts into breast ,so I now have to go in again next week for re-excision and removal of some lymph nodes ,wishing it was all over, then the waiting for the 2 weeks for the results again, I don’t know if anybody has ever felt like well it’s happening going through treatment but it feels like it’s not happening to me , I just can’t seem to get my head round it ,having trouble sleeping can’t seem to concentrate on anything, don’t know what I would have done without my friend and hubby.
catkin 19 must be awful to go through all that treatment and then find you now have to have mastectomy,just out of intrest are you going to western general in Edinburgh,
I will be there Tuesday,
Anyway hope all goes well for you will be thinking of you
liz

DCIS/cancer? My heart goes out to you - having been through this process myself last November - having mast and recon finally in January. I really agree that it’s hard to accept this radical treatment when you don’t feel ill and the breast looks fine (too fine to cut off I might add). I shared the confusion about whether I really had cancer or not, (think Georgiegirl has the sp on that) until two of my nodes came up positive and I had to resign myself to chemo. Six months down the line and I’m getting set up for Herceptin. Something my surgeon initially told me I could be cured of (as if DCIS is rermoved, there is no further treatment needed) has kept me visiting hospitals to subject myself to various tortures for nearly a year now and I’m well fed up of the whole thing. However, it’s all do-able and you all sound like strong, together women so you’ll be ok.

Good luck with the results!

DCIS/Invasive Cancer Hi Everyone

Just to add my experience to this link - I also was diagnosed with DCIS in May after routine mamography picked tiny calcifications in my breast. Went in for mastectomy and reconstruction in July (lumpectomy unsuitable for me as have very small breasts!). Didn’t know it was anything other than DCIS until went back for my results a couple of weeks later - thought I was home and dry - no further treatment needed. Unfortunately although they could find no trace of invasive cancer in my breast there must have been a minute spec that had gone into one of my lymph nodes - damn it! Now having 6 x FEC cycles and then Tamoxifen. Not sure about rads yet - a grey area apparently! This disease is so sneaky and unpredictable - not even sure what my grading is as there was no tumour to measure - yet still in bloody lymph node - life’s not fair is it!

Nikki

reassuring I have just had a WLE & have been told that the margins are not clear - & have had to make the leap to making a choice about a masectomy. I just can’t make that leap without being sure that it can not be sorted out by a further WLE & treatment. It’s hugely reassuring to know that there are others out there lgoing through the same thing. I have requested another consultation & am going armed with questions to help get it all clear in my head.
Any suggestions for the questions I should be asking?
Thanks
FelicityM

Hi Liz yes it is the Western…the ward know me so well now that it’s like an old home from home, but i’m still very apprehensive…and feeling very sad at the idea of losing a breast. i went through a stage of feeling really angry as well…they had been so positive when i was first diagnosed and nothing was actually said about DCIS so i had the idea that i’d just have a lumpectomy and everything would be fine, but there were calcs on the mammogram so they knew it was there. but i don’t feel angry any more, they can only work with the information they’ve got and they haven’t got it until the pathologists have done their stuff. i’m hoping i’ll have the all-clear after this op but you never know…
at first i was so relieved that i wouldn’t need a mastectomy…and in spite of the psychological wear-and-tear i still think it was worth going through all the WLE’s to know that we gave saving the breast a damn good try. i’ve found other people’s reactions hard to cope with sometimes…i don’t really want everyone knowing the grisly details so i just didn’t tell a lot of people and some folk don’t know i’m having a mastectomy. for some reason i feel slightly ashamed about it, as if it were some kind of failure…but i remember from past experiences of bereavement that your mind thinks that if something truly awful is happening, you must have done something wrong and are being punished. it’s not logical, but emotional things never are. it may seem silly but it helps me when i realise that tomorrow is Sept 11th, and on that day a lot of other people will be feeling and remembering losses far worse than this…

dear catkin19 I hope all goes well with you with your op I can only imagine how you must be feeling
I know that it is also my worse fear.
After reading all the messages I know I’m not through yet ,I have tried so hard to keep positive to keep everyone else from worrying ,but at the back of my mind am terrified,
When i’m with friends/family got to be happy and cheerful, sometimes its so hard but I then think of other ladies like yourself and I then feel guilty,
I’m sure everyone feels the same at some point .
Catlin no need to be ashamed its not your fault, its just one of those things and I also keep saying that to myself damm unlucky.
I will be thinking of you over the next few days.
I will be in the Western myself on Tues 12th for my op 13th sept I do hope that date is not a omen .
Anyway you take care.
love liz

clear margins? Hi Felcitiy,

Just read your post - sorry to hear your WLE was not successful.

First thing to check is which margin(s) are not clear - one or more.

What grade DCIS do you have - if it is high grade DCIS then this can usually be picked up by an MRI scanner - which they should have done before the WLE (although not the usual modality - because it is expensive)

If is high grade DCIS - you can ask for an MRI now - the difficulty is that an MRI cannot see through scar tissue - but it can see the rest of the breast.

Like you I had huge problems with the notion of mastectomy and I knew I couldn’t live with myself if I didn’t do all that I could, in terms of finding out information and getting to the right people. Fortunately I got a second opinion - my new consultant had two priorities - cancer safety and secondly a good cosmetic outcome, just what I needed the other consultant (male) just seemed to be of the view - well you’ve had your chance - so lets just lop it off - problem solved. Not the way I saw it at all. Obviously you will need radiotherapy after a WLE

Best of luck

Liz how did you get on?

catkin19 hi catkin19
good result
clear margins no node involvement
to have rt and Tamoxifen
have app with onc Thurs to discuss
treatment of rt (I think)
am so relieved still can’t take it in
love liz xx

How are you feeling now ?

Liz that’s wonderful. what a relief. so pleased for you. i’m recovering OK, just very glad to be home…the pain is a lot more bearable and i’ve got pretty good mobility in the shoulder, hoping to get back to swimming soon…the boob looks pretty much like it did before (still slightly blue!), a bit swollen and hard still but that will sort itself out…

catkin19 hi there
so pleased to hear your doing ok ,so much better at home isn’t it ,
am sure you will be back to swimming in no time .
I seem to be getting quite a lot of discomfort under arm
been taking loads pain killers , not doing much good ,loads of stretching to try and ease pain , will have to mention to
doc i think , think will have a blue boob for awhile yet
I think between the blue bruising and boob much bigger than it should be ugh what a state
the good thing is it will recover
anyway take care
at onc tomorrow afternoon
will let you know how I get on
love liz