Maggie I think you will find you are having chemo because your cancer is her2+ - this makes it a particularly aggressive form. You need herceptin for that, and you cannot have herceptin without having chemo. I think that the test results for her2 take longer than the other ones with the biopsy which maybe is why initially they did not tell you the need for chemo.
Dawn
xx
Dawn
thanks for that - I didn’t realise it might have been the HER+ bit that drove the chemo for me.
Maggie
sometimes i feel guilty that i haven’t had ‘proper’ cancer ‘only dcis’ even though i went through the same worry and pain of a mastectomy and recon. i get so down about it as my family were so worried and i don’t feel worthy of their concern.four months on i’m still weepy does this ever go away?
You’ve had everything that happens with real cancer, including the fact that what you have had might be real cancer, only nobody knows because that’s the way it is with DCIS. And whatever your feelings are, you don’t have to justify yourself, they are what they are. There are many women with DCIS and any other type of diagnosis who feel the same as you. The treatment for bc is horrible and in my view is bound to make you sad. If the treatment for bc was a pill, we’d get over it a lot quicker, but bc treatment - well, in my view it takes something away that you can’t have back, and why should you be happy about that? If you can’t be sad about that, when can you be sad? But surely, we try to understand when other people are sad, try to offer some comfort - so you have a right to some kindness too, with what you’re going through. Others, for all their good intentions often don’t understand, but you will find lots of people on here know exactly where you are coming from, it is natural to feel like you do. It will take its own good time, and probably best not to fight it just go with the feelings and let them work themselves through, and talk about it on here if you have worries - because there will always be someone who’s been there…
sno
Havn’t been on this Forum for some time, but have just read comments from Snowhite. Thank you for your comments this is how I have been feeling for some time. My diagnosis of DCSI was given me in Oct.2007 and I was told I would have to have a masectomny, I chose there and then that I would have a reconstruction at the same time. I was in hospital on the 2nd Dec that year, and I left hospital on the 10th. My appointment on the 13th for results proved to be clear I didn’t have to have tomoxefin, radiotherapy, or chemo.I marvelled how I had been treated,excellent nursing, care etc.always kept informed, everything was explained to me about DCIS,but at the time it does’nt register, you listen but don’t take it in seriously, I came away so thankful, but bemused, I had never been told that I had breast cancer, I know DCIS is subject which has been discussed, is it or isn’t it breast cancer, and I have read all the articles regarding DCIS, but I feel at the moment I am struggling with myself about things, I am going over and over again about it. I feel well in myself but I can’t free my thoughts. I am reading on forums of other peoples problems, I have had none, everything went well.So, why do I feel like this. But once again thank you Snowhite for your comments. Hilary
I was diagnosed with DCIS in January of 2009. The more I read about it,the more confused I was, and still am. At first I felt like an imposter in telling people that I had cancer. After all it was a first stage, Insitu cancer. When I read about it on the internet the treatment sounded so simple, a lumpectomy and radiation. It was a shock when a surgeon would only offer a mastectomy, as treatment because the micro-calcifications were over a wide area,which would make for a bad cosmetic appearance. Since then I have had a lumpectomy, two excisions and a sentinel node biopsy which showed cells from a different cancer. Which resulted in my having seven weeks of radiation. I just had a one year mammogram which appears to be free of cancer. I am told by an oncologist that I can consider myself to be in remission, but this is the same person who said I still have DCIS which may, or may not become active again. I am taking arimidix to block estrogen which would feed the cancer. At one point I considered mastectomy, but it would have been wrong for me, and I am at peace with my decision. There is no history of cancer in my family. Whatever DCIS is, it sure has made me crazy.
I am so relieved I’m not the only one who feels like an imposter for having dcis.The surgeon said ‘you do not have cancer but it could turn invasive soon or never’ the plastic surgeon said ‘I see you have breast cancer but don’t worry I am here to help and I can make you a new breast’ which he did. I had a mastectomy and lat dorsi recon but was back in hospital after 4 weeks with an infection in my back that really knocked me for six.I had my op on sept 7th and still don’t feel 100% and I think it is partly due to the guilt I feel for not having ‘proper’ cancer.Hopefully I can get over this now I know that others feel the same way I do.
Hi
I had DCIS - widespread and a mastectomy in June. I was told it may, or may not develop into invasive breast cancer. I am very grateful that after the mastectomy I needed no further treatment, but I still have to come to terms with having one breast. (I chose not to have reconstruction). I still worry about recurrance in my other breast. Everyone is different. Maybe it is still early days for me. I feel last year was a hard year for me.
My best wishes go to everyone.
Liz
Hi girls, i like you was diagnosed with DCIS only back in Nov 2009, had a mastectomy and DIEP recon and a reduction on other breast, but when my results came back the DCIS has turned invasive only 4mm but still a shock. Now going to be undergoing chemo and just wish it was still “in-situ”.
Good luck to you all. Love Liz xx
Hi
I’ve just had a lumpectomy for invasive cancer and then found out I have a wide area of DCIS and so need a mastectomy. I did say to the consultant that it wasn’t a real cancer and he assured me it is definately cancer not benign, it isn’t at first invasive but can be if left long enough. So all of you please don’t think you have not got cancer, it’s just as much a risk of the invasive type. Perhaps even scarier because half the time it can’t be picked up on mammograms. Don’t be feeling guilty.
Hi all
I can relate to so much on here, to the words “imposter” and “guilty” and “just” DCIS…
But, really, you know, we shouldn’t feel this way!
Because:
Step 1
We still have had the trauma of either finding something, or being recalled after a routine screening mammogram. (More often than not - the first mammo we’ve had as part of the national screening programme - Happy 50th Birthday!!)
Step 2
And then, the cycle of tests, biopsies, waiting for results…all starts. Which, as everyone finds, is bl**dy hard, on us and our families. This period of time can be anything from a week or so - to a month or more. I had a MRI as part of a clinical trial - which identified a second area of concern…leading to more tests / biopsies/waiting for results, and I know I’m not the only one to have had that sort of experience. And at this point - it could still be anything from “just” DCIS, to invasive…and beyond.
Step 3 Surgery
And then - it’s mastectomy if DCIS is widespread; lumpectomy and the “Holy Grail” of clear margins, with the possibility of further ops including Mx, if said clear margins not achieved. More Mxs done for DCIS, I think - than for a defined, invasive, lump.
Step 4
OK, so, then we wait for the results from surgery - again could still be anything from “just” DCIS …or invasive that wasn’t expected…
Step 5
Radiotherapy - it’s tiring; it happens everyday; the skin gets hot/prickly/may break down
And, despite what happens on Coronation Street…a mere 6 months has past. Anything up to 3 ops (if they don’t get clear margins, have another go - then do a Mx?) - throw in the major reconstruction - that’s a fair bit of general anaesthetics to cope with, eh?
Can’t have radiotherapy till surgery has healed, then there’s waiting lists to get through…
Yes, we are lucky! - and I say that with no irony - very few of us know we have DCIS, and the press (and some surgeons - mine included) do go on about the “over diagnosed / over treated” - which can reinforce the feeling that we are " not worthy" of the comfort and support that “proper” BC patients deserve. But, big, huge, BUT - we have caught “it” early … and whether or not it might or not have developed…we have had the opportunity to have it dealt with.
Yes, we’ve avoided chemo - and I have the utmost admiration for my friends, real and virtual, who cope with that.
Yes, we are less likely to have further problems, and diagnosis of secondaries…and the same comment as above applies.
But, we have still all had an experience - which has been tough. Not as tough as many on this site, but tougher than many who - thankfully, will never feel the need to visit this site. We should not feel guilty, the psycological and physical effects of diagnosis and treatment for “just” DCIS are real. Yes, it needs to be put into perspective compared to other life changing events - but still real.
Oh, sorry, didn’t mean to highjack the thread with such a wordy post - but I am in the position of looking back on my first year - Dx 16th Feb 09…so probably more reflective than those going through the first days/weeks of confusion.
If this resonates for anyone - feel free to PM!
Lizzie xx
Lizzie
You have expressed everything I have been feeling and my family too in the last 6 months since my diagnosis. Well said. Thanks for putting it into words.
Liz
Hi, i have felt exactly the same especially when i have friends who have breast cancer where they are having chemo then lumpectomy.
I did not have time to come to terms with my BC (DCIS) before i was booked in for a mastectomy and re-con. This happened in November of last year and i am still extremly uncomfortable. But i am of course ‘lucky’, who are they kidding.
Hi Liz and Looploo
Glad you feel that we share the same feelings - and I’m sure there are loads in the same situation.
All our experiences are real, and have an effect on us as people; we know that others do have more to deal with; but it doesn’t mean our experiences are not important!
Onwards and upwards…!
Lizzie xx
Hi Lizzie
I feel exactly the same as you about DCIS, first I was told it was precancerous, I would ONLY need a lumpectomy and no rads…okay I can deal with that, then my surgeon called it cancer with the possibility of a mx if no clear margins and I would definately have to have rads!! After 3 ops (no mx) I now have clear margins and I start 3 weeks of rads this Thursday. Then the oncologist said I was lucky and that it will all be okay after the rad treatment as it was precancerous!! So I am still confused, but my sick notes have all said breast cancer as the reason I am off work, so I have got used to calling it that even though I don’t have to have chemo. And why is that people think that having rads is the easy option?? I know its not chemo and my heart goes out to those of you who have to have that, but rads is still scary and I’m not looking forward to Thursday one little bit. I’m left feeling that I am some how guilty of fooling people that I have cancer when I don’t look ill and I’m not going to lose my hair. Getting through these past few months has been hell on me and my OH…and it’s funny how the phone calls and visits from friends and family seem to dry up once they think you are ‘alright’ or am I alone in that one and perhaps I’m just being so awful to everyone at the moment that they just don’t want to visit?
Phillippa x
ladies, I’m sitting here at work reading your posts. I was told I had DCIS September 09 and had a mastectomy 21 October 09. I was told that I do not need to have any further treatment as margins were good and nothing in lymph nodes. I went to see the oncologist two weeks ago to discuss the possibility of adjuvant treatment and she told me that they would have to test the tissue samples for oestrogen!!! What I need to know is WHY my breast tissue was not tested for Oestrogen or HER2 in any case? I was told no invasion but there were two areas (one NOT picked up on mamogramme)and it was intermediate to high grade. Now I am more worried than before as I still feel I may be sitting on a time bomb with the other breast. I currently have an expander in and although it feels harder than a regular breast, all is okay with it. I’ve had 2 refills to top it up and not had any problems with it. I don’t mind my scar, it’s my war wound! 