Do I really need a mastectomy for DCIS?

Hi I was diagnosed with DCIS grade two in June, the only treatment I’ve been offered is a mastectomy and perhaps Tamoxafen later, has anyone out there refused the surgery and been prescibed just the drug treatment?

Just bumping this up…

Hi Shakey

Firstly, sorry about your diagnosis and you’re now at that horrible ‘what to do’ place. I too was diagnosed with med grade (turned out to be high grade & 4 parts had turned invasive when breast tissue was examined after mastectomy). The histology showed that my disease would have (very rapidly - within 6 months apparently) become inflamatory breast cancer which does not necessarily produce lumps and is one of the most aggressive types of cancer - possible very poor prognosis if treatment hadn’t started. Of course, that now makes it very easy for me to say that the operation was right for me! When you don’t know for sure, it’ not that simple.

I started with that paragraph because, like you, I was considering ‘just having taxoxifen’ as after all it was ‘only DCIS’. I was on the brink of refusing a mastectomy, feeling that it was overkill. The awful thing with DCIS is that it may well do nothing (as DCIS it can’t) BUT when it develops the ability to spread and become invasive cancer … well, we all know the rest.

You need to know exactly what DCIS (ie, low/med/high) grade, how much is in the breast and where etc so that you can make an informed decision and don’t be afraid to ask, ask, ask.

I hope you come to a decision that will be good for you and and that you can live with. I wish you all the best in coming to this.

Lots of love. Cathy x

I was the same, DCIS with a small amount of cancer to spread. I had mastectomy, SN removal all clear and now on Tamoxifen. I am 53 and decided that with a two week old grandson I didnt have much to think about.

I am getting on really well and have been given the option of recon and reduction of the other breast when I feel I want to.

I do think its an individual choice and something that only you can decide. We can tell you our stories and any advice and hope that you can come to a decision that you can live with.

I wish you well and thank you diepcat for the info.

Good luck to everyone living life with passion.

Hi to everyone that replied to my post, this was my first time on here.
I can’t decide what to do so at the moment have decided to do nothing.
I can’t bear to go back to the hospital that told me I had this awful disease, so I’m waiting on a referall to another hospital for a second opinion (secretly hoping for a diagnosis that says It’s all been a dreadful mistake).

Dear Shakey

Is that your name - or a description of how you feel?

Anway, as I’ve posted elsewhere on this site - I too was diagnosed with DCIS & recommended a mastectomy with senitel lymph nodes removal. Well, I thought - if DCIS is non-invasive, it all seems a bit of a radical over-treatment to me. So, I read a lot of postings on this invaluable forum, & lot on the internet. I phoned & spoke with the forum nurse/mediator. My hospital arranged for me to have full C Scans & Bone Scans, to check if the cancer had spread.
No, it has not spread. So - I’ve decided to let sleeping dogs lie.
Not to have any treatment. Just get on with my life.

Hi Shakey

Whilst it is helpful to know other peoples’ opinions and treatment choices, I seriously wouldn’t recommend that you make any major decisions until you have your individual facts in front of you. I think the argument about whether DCIS should be treated or not is very controversial and still enough about it isnt known. A lot would depend on your age, your family history, the grade and size of your DCIS and if it was widespread. DCIS, in some people, is early cancer, with the potential to become invasive and kill. In others, it lies dormant and does no harm. I was diagnosed with DCIS last year and had surgery and radiotherapy. I spent a lot of time with my surgeon and oncologist discussing appropriate treatment and decided at my age (48) to proceed with the current protocol. My point is we are all different and what would be OK for one, would be deadly for another


I was diagnosed with a HG DCIS which appeared suddenly (I was having regular screens). It was a large area - almost 2" long and .5" wide.

After a mastectomy, I didn’t need any more treatment - but that was only confirmed after the node sampling was checked.

I’d agree with Cathy 100% - we’re all different and all have other factors to consider.

Good luck!


Hi and thanks to everyone who replied to my post.
Having read and considered peoples own experiences I will probably opt for MX with recon, I have a son of 14 and I’ve told him I haven’t got cancer.
it was only a year ago that he saw my mum die a terrible death from lung cancer and I just hadn’t got the courage to admit that I also had got cancer.
These are my thoughts today regarding MX but I’ve found over the last few weeks that my decisions change daily if not hourly so who knows what I’ll do when I get to see the surgeon again!
Anyway thanks again to everyone love Jacqueline x

Hi Shakey

I think what you’re feeling now is perfectly normal about not wanting to accept you may have a form of cancer. You are still in shock and like you said, almost trying to deny the fact that you may have cancer, especially if you are still grieving for your mother. The decision to have mastectomy would be easier in some ways if you knew you definitely had cancer because you wouldn’t have a choice. The big problem with DCIS is no-one knows which ones will turn nasty. Did your surgeon offer to do a lumpectomy or did they say the only option was a mastectomy? If that is the case, they must have a good reason to do it. You need to get more information. Try the helpline on this website and talk it through with someone. Once you get your head around the fact that you have a form of cancer, making a decision for treatment may be easier. Remember that DCIS is very treatable and although having a mastectomy sounds really drastic, it could well save your life.

Best of luck and keep posting.


Hi Cathy
thank you for your comments, the surgeon said that a lumpectomy was out of the question as it had affected about a quarter of my breast. I have tried to read as much information as i possibly could and that has probably been the problem. The only stories that stay in your mind are usually the bad experiences that other women have had regarding reconstruction and finished results.If I’d accepted the diagnosis and treatment offered back at the start of July i probably would have had my op by now and been on the mend, but I needed to get my head around what was happening and don’t think with all the time in the world that’ll ever happen.
jacqueline x

Hi Jacqueline

You hopefully one day be able to accept your treatment,but it is so early that I guess you are still numb with shock. Also, please remember that the people who write on the forum about their bad experiences are only a small percentage of those who actually have treatment for BC/DCIS. And human nature as it is, often people are more likely to write about their bad experiences than their good ones. And some women who have had treatment may not even visit this forum. For example, my friend’s aunt had DCIS and a mastectomy and reconstruction 10 years ago with my surgeon and has been happy with the results. When I spoke to her, she said it was so long ago she has stopped thinking about it so she won’t be posting on here. This is a brilliant site for information and support, but it should be taken in context as many others are treated and have accepted it without problems. It is very early on for you, but you have a very treatable condition. Why don’t you start a link with “who has had good experiences with their recon” - might surprise you!


Hi Shakey. I’ve sent you a PM.

Hi Jacqueline

Hope you manage to arrive at, and feel comfortable with, a decision soon. Recons don’t always go wrong. I had mast & recon (same time) in May, using DIEP method. The worst part for me was losing nipple but other than that, I still have most of my breast (filling was changed but most of skin kept) and so the psychological effect has not been too bad (& nipple can be ‘made’ in a simple op under local). Some women chose to have mastectomy and leave it at that (they may not feel able to, or maybe its not possible to do recon) and if they are comfortable and happy with that, that’s fanastic. However, not everyone is OK with that and thank god there is the option of recon. If you can have a result which brings you back to as near to how you looked before BC then surely it’s worth doing. This can be psychologically as well as physically helpful (ie, you won’t have the constant reminder of BC. Of course, this is assuming that the recon has gone well with no complications. You need to really ‘grill’ your surgeon and make them tell you everything. Even if you decide not to recon, you can always have this done at a later date if necessary. We now have more options and no longer have to walk around with ‘nothing there’ … unless we choose to do so. Personally, I’m glad I got it all out of the way in one go. Good luck with everything. Feel free to PM if you wish.

Lots of love. Cathy x

Hi,First time here not good at asking for help but all the women here seem to know more than medical staff I speak to.
Usual story routine mammo multipule microcalcifications found core biopsy results say it is ADH ( atypical ductal hyperplasia) within 15 minutes of being told this the consultant was recommending mastectomy. WOW. Made me feel like I was in a meat processing plant. Didn’t like his appoach so got referred to another consultant (why are all breast consultants surgeons?) whose first words were this is not cancer. On looking at my biopsy results on my 2nd chat with him he now says we are pretty sure this is already DCIS. Don’t understand why he changed his mind. I am now booked in for a WLE next week where he will root around and remove 20 grams trying to pick up some of the calcification for testing. Sorry to go on but I am so confused. If 80% of calicfication is benign and only 30% of DCIS likely to become invasive why should I have some one remove lots of my boob on the off chance its DCIS. Am so close to not going cos whatever the result either way I think I would rather watch and wait. As so many of the people here seem to have lumps surely I must have more time to think. Has taken me 2 months to start eating a properly again. What to do is such as problem. Help

dear Lindiana, I think you need to give yourself time and read up on DCIS It is classed as a precancerous state and doesn’t mean it will develop into cancer.
Michael Baum has written a lot about this and thinks the medics jump in much too fast on DCIS.
If you want to pm me please do

dear leadie,
Thanks for your reply. You get sucked in by them I was told to cancel my holiday and postpone house rebuild for this op which made me panic, he got quite stroppy when I said I wouldn’t have a WLE in July because I wanted to go away. Working out the percentages 6 in 100 will turn invasive. When I’ve got my sensible head on it all seems so over the top, then I get into the hospital mode and turn into a blob again. I know I am extremely lucky to have found this so early but i don’t feel it. Am panicking about WLE I am such a woose but that may be cos I think it is unnecessary. Have had 1 stroke am more worried about having another from all this stress. Will read up on this Baum chap thanks for the tip. Complete luddite don’t know how to pm. Hope you are well and happy. Lindiana

Hi Lindiana

Sorry you’re going through all this confusion and you’re right, the ladies on here really do seem to know more than the medics. I think that’s because we’ve all had similar and very differnt BC experiences and treatments. As not all cancers are the same, not all DCIS is the same. Some will develop into cancer, others never will, but for now, we don’t know which ones will/wont.

I was diagnosed with DCIS in March this year and told it was med grade ER+ (this was from the core biopsy). There was a large area 10.2 cms and I was told that mastectomy was the only option. I very nearly walked away to ‘wait and see’. After the mastectomy, the beast tissue was examined and it was found that the majority of the DCIS was in fact ‘high’ grade and four areas had already started to turn invasive. The registrar assured me that without any treatment at all, I probably wouldn’t have been here in October. I was due to go on and develop IBC which, I understand does not always produce lumps and by the time it manifests itself, it’s extremely hard to treat as it’s so agressive.

I’ve not written the above to try and scare you, it’s just my experience. For many people, DCIS is harmless and will never develop (hence the media informing of it’s ‘over treatment’ which for many will, unfortunately, be true, but you do need to know what grade it is (ie, low grade DCIS is likely to not do much so you may well have time to ‘sit & wait’, whereas to ignore ‘high’ grade DCIS could prove fatal in some cases). I was lucky in that I had immed recon with mastectomy so was able to wake up with most of my breast still there and this has been a greate psychological help. Of course, since receiving results of the post op histology, it’s pretty ‘in your face’ that the treatment wasn’t a waste of time.

Good luck Lindiana - all I’d say is ask, ask & ask again so that you’re fully informed and can make a decision that’s right for you. Not all cancers produce lumps so it’s not always a case of waiting for one to happen.

Lots of love. xx

Dear diepcat thanks for the points you have made and sharing your experiences with me more food for thought. Did you have ADH before you were diagnosed with DCIS? I just don’t understand they suddenly decided I must already have cancer when there is only “sand” to be seen a and biopsied. I was told my ADH was low grade seems an enormous leap from there to cancer. From what I can work out approxiamately 6 in a 100 are likely to become invasive. Having checked back through the female line nearly 200 years no one in my family has died of any kind cancer. We tend to be stroke/ heart attack victims mine won’t be long with all this stress! Thanks for you help. Lots more reading to be done me thinks. Don’t think I will go for the WLE next week will may be see if I can get some more info out of him first if not try yet another doctor. Have a lovely Sunday. X

Dear Lindiana, give yourself time and don’t rush into anything you may regret in the future.
I think the problem is we get sucked into the medical model of health as if it’s the only way to go and that they know best. The thing is it all depends what your point of view is and who you talk to.
There is a whole world out there of differing opinions,ways of treating cancer and different philosophies of health.
I think giving yourself plenty of time and finding out all the other options and then make an informed choice
It’s not easy though
Best wishes