Hi all,
I was reading the Daily Mail online during my lunchbreak today and came across this article which may (or may not!?!) be of interest …
Sue x
Hi Sueinspain…thanks for posting the article on DCIS. I found it really interesting. I was DX with IDC and had a WLE. But the margins had DCIS in them…(this was the first time I had knowledge of DCIS)when they told me about it they said it was precancerous which is why I was surprised and shocked when they offered a mastectomy, it seemed quite a radical treatment. But they ended up giving me another WLE…Again they found more DCIS and this time suggested that a mastectomy with immediate recon, was the only way to go…which I comletely accepted, because my only concern was getting rid of it!! I think there are lots of people out there who are bewildered about the information given for DCIS… Since then I have been interested in finding out more about it.
Thanks sue
Helen
As a fellow member who had DCIS, I too have done a fair bit of research and have a couple of points I would like to make about the Daily Mail article
Firstly, the aim of screening is not to reduce the amount of surgeryn as the article implied, but to save lives by detecting cancer before it has chance to spread and kill. Clearly, it would seem in most cases to make sense that the smaller the tumour, the less tissue should be removed. But in breast cancer as in common with many other types of cancer, this is not the case and the amount of surgery needed is correlated to the area of the tumour and its likelihood of spread. I have a very small area of contained DCIS, so I was lucky and only needed a small lump removed. Second point is that If I had widespread DCIS, my personal choice would be to have a mastectomy because unfortunately, there is still not enough information regarding who will die from untreated DCIS and who will not. Without that information, not having a mastectomy for widespread DCIS for me would be like a form of Russian roulette and a gamble I wouldn’t be prepared to take as the alternative of dying of cancer far outweighs having radical surgery.
I agree that much more research is needed and much clearer information provided to women to allow them to understand why they need a mastectomy and allow them to take a gamble not to have surgery if that’s what they wish. What is unacceptable is being railroaded into screening/surgery/radiotherapy etc etc without knowing why so when articles such as those in the Daily Mail come up, you always are questionning yourself as to whether you made the right choice. Armed with good information, you make your choice and live with it.
Hi Cathy, Nell
Im glad that you found the article of interest and worthy of debate! Even though I was given the all clear following tests last month (benign thank goodness) it has made me more aware of BC and my own personal view that information and knowledge are better than complete head in the sand options which is probably what I had before my own “scare”.
The article interested me because it appeared to highlight once again an area of BC that is not covered all that well in terms of information, and advice - and of course a vast range of opinion in terms of treatment.
Dont know if you noticed but at the very end of the article was a new website that looks as if it has a section dedicated to DCIS (I had to cut and paste the link into my browser to access it)… so maybe people are looking at DCIS more closely now and trying to get more information our there for people who are diagnosed with the condition.
Best of luck to you both and stay well.
Sue x
Hi Sue,
Great to hear from you and good you’re still in touch.
I found this link particularly interesting as it defines my position at the moment. I was diagnosed with DCIS and had a WLE to remove it. However clear margins were not gained so I had to have another WLE and have been warned I may need a mastectomy.But i am fine about this.
As someone has already said, I would much rather have the mastectomy and therefore reduce the chance of recurrence as much as possible. Nobody knows if or when DCIS could turn invasive but I can’t live with that risk and certainly would not the constant worry and checking to see if it had turned invasive.
I also think other experineces may have influenced my decision too.My Mum died of BC at 48 and I’ve seen at first hand the devastation of this. If there is anything at all I can do to prevent this from happening to me I will do it. I want to be around for my own children and hopefully their children too! I am 37.
Furthermore my diagnosis was complicated. First they told me my lump was benign but then they decided I most likely had lobular cancer. I spent two weeks thinking I had invasive lobular cancer. After that they decided I had DCIS. In the end I was actually a little relieved with the diagnosis of DCIS. This is what I find quite puzzling about the women who would have preferred to wait to see what happens. Surely it is better to deal with something BEFORE it becomes invasive.
I have also done extensive research on the topic and wonder if others have too. DCIS can be defined as either high,medium or low grade. It is the high grade DCIS that most often turns into invasive cancer. Furthermore high grade DCIS usually goes straight to grade 3 invasive (it doesn’t go through grade 1 and 2 inbetween) I have high grade DCIS- even more reason for me to want a mastectomy I think! However I did have to probe my consultant to tell me what grade mine was. I wonder if these women knew their grade and this info? Perhaps it is the system that is failing to give people the full facts and knowledge?
Sorry this is a long post but it is particularly pertinent for me!
I have the results tomorrow to see if my second WLE did obtain clear
margins. For me, that in a way is now irrelevant as it s a mastecomy I want.
Love Freddie xxxxxxxxxxxxxxx
Hi Sue, good to hear from you again! Bet you are having better weather than us, enjoy it, just don’t rub it in!!
Yes, interesting, but has to be taken in context. The Prof who is making loads of waves about this at the moment, says (in the article) than “fewer than half of the DCIS cases become invasive”. - Now, to me, that means anything up to 49%! - really do not see how you could sit and wait to see which group you were in. How would you monitor? - mammos involve xrays, which can be harmful in excess, DCIS does not always show on U/S…
Personally - and of course, everyone is different - I am glad I have had the treatment, rather than risk my DCIS becoming a lump that I only find when it has caused more serious problems.
No doubt, in the future, there will be more info on the goodies and the baddies, and there will then be more informed choice for women. But what we have at the moment - is, what we have. Adding to the trauma of tests, waiting, results and so on - we should not then torment ourselves as to whether we have had unnecesary ops etc.
Stay healthy, Sue!!
Lizzie
My DCIS was invasive but hadn’t yet spread to the lymph nodes. It was Grade 1. Having had time to think about it, it was probably present about 3 yrs ago as a tiny lump but I only felt it the once.
Hi Everyone
I found the article VERY interesting as I have recently been diagnosed with DCIS. As it is widespread I am having a mastectomy on June 5th. It certainly gave me something to think about, but I will still go ahead with the op. I will also look at the new web site.
Thanks
Liz
Lizzy, Freddie - lovely to “see” you re this post … hope you are both doing ok.
I know this subject (DCIS) has been covered in previous posts - but as it was a new article I assumed it would be of interest to you guys. I dont think at the moment there is a right or wrong decision to be made by you ladies on what treatment, if any, you undertake … ultimately whatever the diagnosis the choice has to be yours. But in order to make the right choice you need the right information … and Im hoping that the information given for DCIS becomes clearer that it appears to have been to date.
One thing I would comment on is that if “fewer than half of DCIS cases become invasive” then for me that would be a big enough statistic for me to want options!
I wish you all well as always - Good luck Liz100 with your surgery on the 5th June… and I hate to rub it in Lizzy BUT yes its glorious here in Spain and looks like the full on Summer is here! but remember wherever you live you still have the same things to do … so Im still in the office, with my pile of ironing at home - the dog to walk, the hubbies dinner to prepare blah blah blah !!
Love Sue xxx
Hi
I feel I am in the hands of my specialist. He thinks surgery is the best option for me. He knows more than I do about DCIS. I am certainly finding out as much as I can - and this site is a great help. Somehow I think there are two choices - live or not - so I will opt for the surgery.
Liz
I know this is a bit late but just picked up this thread. Very interesting.
I would just like to add one thought for a perspective on this - I do see and understand what has been said.
A lot of the trauma of DCIS is about not being properly informed. The doctors seem to have terrible difficulty explaining that it is cancer, but has not yet invaded, and with some women never will, but we can’t yet tell which women; and that if it invades, it may be many years down the line; or quite soon; and that it is diagnosed usually by the mammogram and the biopsy, and that these do not show everything in the breast and in some women there may already be actual invasion which has not shown - and this can only be determined by doing surgery; and that there is a measure of urgency but not panic with invasive cancer because even though this may be developing slowly we do not know how far it has already gone and the sooner we treat the better the prospects.
That is all fine, if they could just tell us that in the first place then I believe many, most, women would decide that they had better opt for the surgery, regretfully, because of the unknown element here.
But - there are some women for whom death is preferable to mastectomy. I think that is just a fact. And it is their right to choose, and they are having that right taken away from them by poor information. There probably aren’t many like that, but it is their right - and because the whole thing is complex they need the information up front to really think it through.
Secondly - and this is where I fit in - I would say that it is a terrible terrible thought to live with that you have had that dreadful surgery and might not have needed it, and if they were able to tell which will develop and which not then you could know one way or the other. But I do feel it is horrific to think of such radical surgery that in some cases is actually not necessary.
So sure, you take action to do away with the fear of death, but what some people get instead of that is the horror of knowing they have consented to what they feel is mutilating surgery that might not have been necessary. Some women find that quite hard too.
I also believe that this trauma could be alleviated by prescreening counselling and education. That way women would be less traumatized when faced with the dilemma, forewarned, forearmed, and better equipped to make that decision which would then be their own decision rather than them feeling they were railroaded under duress when in a predicament of already facing a diagnosis.
sno
Hi Liz
I also had DCIS and a mastectomy in December - the operation
was successful and I did not need chemo or rad. The oncologist
put me on Arimidex - I Have been taking it for a few months
and fortunately the side effects have been very minimal so far.
The operation was not nearly as bad as I expected for I did not
opt for recon at the same time. I was too scared.
Do hope your operation goes well take care.
The only thing I do wish I had been made aware of this site
at that time I think It would have made it a little easier
I only discovered the site a couple of weeks ago.
Rossco
Hi Im Shirley, I was diagnosed with DCIS in November after my first mammogram. A 2.6cm lump was found by ultra sound, although it couldnt be felt. In Spain they advise mammogram and an ultra sound.
I was shocked at first, but the care has been fanstatic. I had the lump removed, margins were clear so were lymph nodes. But because of my age and cancer being oestrogen+ . They gave me Chemo, and Rads. Spain tends to have a belt and braces approach. they told me it was for my future. So I went with it. I have just finished treatment this week. Its been a long 7 months but Im glad I listened to the doctors. Rather get on with it now then later. I found this article really good. Thank you Susie for still thinking about us. best wishes to all. Shirley XX
Hi all
As a DCIS sufferer myself I have currently been doing extensive research myself too.I had two lumpectomies but no clear margins so it is a mastectomy for me.
Although it isn’t detailed in this particular article there is some research being done about recurrence of DCIS and whether or not it becomes invasive or not. More of this kind of research is obviously needed if we are to make informed decisions about our treatment.
A current study shows that recurrence as invasive cancer is more likely to return if the DCIS is high grade,palpable when found and widespread thus not getting clear margins following removal. Unfortunately my DCIS fits the bill here so mine is probably more likely to become invasive if left.Hence the decision of a mastectomy which has been imposed on me seems to be the right one in my case.
However I feel I have not really been well informed about my DCIS.I really had to push to find out any details of my pathology. I had to ask on three separate occasions before I was told my DCIS was high grade.I have no idea about the hormone receptor status of it, but I am told that it IS possible to get this information though it does not seem to be routinely shared with DCIS patients.My next step is to find this out.
So for me, it is the communication issue. We need to be given far more information so that we can make informed choices.
Love Freddie xxxxxxxxxxxxxx
Hi all
Interesting, Sno, that you make the comment about counselling before screening.The Macmillan nurses locally were discussing this at a support group meeting I went to recently.
As we’ve all haad to accept, presently, there is not enough knowledge into which DCIS will cause problems, so treatment is standard. It may well be like this for many years, so how can women be better prepared for this possibility?
As far as I was concerned, you went along for a mammo when you hit the big 50, and you found out if there was BC or not. Really had no insight at all into this DCIS business! Surgeons and other medics seem to be really quite dismissive “It’s not proper cancer” - but it still involves surgery, all the mental stress of waiting for results, often rads, often further treatment.
Your explanantion is far better than any I had in hospital, Sno!
Lizzie