Hi everyone,
I was diagnosed with DCIS on 8th August following a WLE. I have been told that my preferred treatment is a mastectomy but this seems so radical for what I am advised is a pre-cancer. Has anyone else experienced this? I feel very confused and scared by my situation and would welcome any advice.
LisaNicole10
Hi Lisa Nicole
I totally feel for you and understand where you are at this moment. You are not alone.
I was diag with DCIS early May and have since had a mastectomy and immediate recon. I do understand that this early cancer but it is still cancer although it has not yet become invasive i.e. when it can travel. I asked my surgeon what would happen if I did nothing and he replied that it would turn in to invasive cancer within 1 to 5 years. This may just have been true for my case and I do know that everyone is different and I also understand that there are different grades of DCIS as with all cancers. I think the route of treatment that you are offered is possibly governed by how ‘at risk you are’.
My cancer has now gone. I had the all clear two weeks ago today. The operation on it’s own has cured the cancer that I had. I feel lucky that I found my cancer early and that it has now gone. I will require further ‘upkeep’ from my surgeons for my new bionic boob (which looks fab) but otherwise no other treatment.
Ask questions - you have Breast cancer nurse - if you are unsure. They are usually wonderfully kind and full of information. Call the helpline on this site. They were also wonderful. You can ask to speak to another person of a similar age, diag etc as you and Breast Cancer Care will pair you with someone who has been there and done it all. Mine has been a blessing.
I absolutely promise you one thing - you will adjust to this, you will get you head round it and you will feel normal again someday in the not too distant future. You are in shock now but it will get better.
There will also be local groups you can speak to - hunt them out if you need information.
much love
Ruthus xxxxxxxx
Can not imagine how you feel but just want to send love and support - listen to lovely Ruthus’ sensible advice.
Love Tuesday and the Lymphomaniacs
I thought the same. I felt annoyed that the treatment for DCIS is often more radical than for cancers with more potential to spread but things are quite uncertain in cancer so the tendency for doctors is to think they ought to operate if there’s a risk of something worse happening later.
I had a tumour between 1.5 and 2 cm which was invasive but had focal DCIS around it. They said I could have a segmental mastectomy to cut out a wedge of tissue about a quarter of my breast because they thought the DCIS was in one place. They said if they found any more it would be a mastectomy later. The pathology report showed I had clear margins so that was OK but if it hadn’t they would have advised mastectomy and I would have ended up having three ops, the lump taken out, the segmental mastectomy and then a mastectomy to remove whatever was left behind.
There are very few studies of DCIS, the ones I have seen were on about 28 people wrongly diagnosed with DCIS who went on to develop breast cancer. It took about 15 years to develop but they reckon that most DCIS never develops but there’s no knowing what it will do if left long enough. I was 48 when diagnosed so I had quite a lot of time potentially ahead of me for something to happen. Against this, my cancer was grade 1, the least likely to recur or spread. The other problem I had was that my kind of cancer was incredibly rare and the only documented cases on the internet suggested that it was more aggressive than other kinds of ductal breast cancer. So I really was very nervous about leaving any of it there, even if pre-cancerous, particularly as I’d been wrongly diagnosed with benign breast disease for six months.
So I didn’t know what to do - my hospital protocol is always to remove DCIS so that’s what I had, but I do think they now try and avoid mastectomy if you have a small amount of it in one place.
I think you should check your pathology report.
Mole
Thank you all so much for your comments - it really helps knowing that I am not the only one who has had to face this decision.
I did ring the breast cancer care nurse today and found out it is high grade DCIS which I guess is one reason why they are advising such radical treatment. She also said that because I am a 34A another WLE is more likely to affect my shape and that a mastectomy and full recon will provide a better result - is this your experience? What further “upkeep” is needed after a mastectomy? Is this still preferable to a WLE and radiotherapy? I really appreciate your views.
Much love to all,
LisaNicole10
Hi LisaNicole
I had a WLE and radiotherapy for DCIS in February. If you look at the evidence about DCIS, the most important thing for the surgeons to achieve is what they call clear margins when they remove the diseased tissue. This means that when they cut the lump away, there is at least 6mm - 1cm or more of healthy tissue all the way around the lump. If there isnt, then there is a chance the cancer will return. I guess your surgeon feels that this will be difficult, especially if you have small breasts and that by hacking another lump out will leave it looking odd. Also, high grade DCIS is more likely to return than low grade, so this will also be factored into their decision. If you have a mastectomy, the chances are very high that you are cured and need nothing further except regular checks on the good breast. If you have another WLE providing clear margins are achieved and you have radiotherapy, then you are almost certainly cured too. It all depends on whether clear margins are achievable. You need to ask your surgeon more questions.
I’m not that happy with the results of my segmental mastectomy as I’ve ended up with a dent. Also my nipple has moved towards the place the tumour was so it’s further towards my armpit, the other one still faces straight out so that’s not so good. Also if I’d had a tumour higher or lower, my nipple would have moved up or down. Luckily it was mid way up my breast on the armpit side so it could have looked worse.
I used to think I was 36A but since having breast cancer I have discovered I am in fact a 34B so maybe that is why they decided I’d look all right with a quarter chopped off. Personally I still wonder if I’d have been better off with partial or complete reconstruction. I wanted partial reconstruction to keep my nipple but have something rounder and more bosom shaped than the dented result I got. There’s very few surgeons around who do this surgery though and it isn’t perfect, no breast surgery results in exactly the same shape you had before and it all involves some kind of scar, athough some surgeons go round the nipple to disguise it. I would get your pathology report, discuss the pros and cons of cosmetic results as well. WLE and radiotherapy means you keep your nipple and get a more or less mishapen result dependent on where the tumour is and your breast size. radiotherapy changed the texture of my breast and skin, it sort of hardened it and made it swell up for a long time. Mastectomy with reconstruction depends on the skills of the surgeon, how you heal and you usually lose your nipple and I think a lot of reconstructions aren’t that convincing. They definitely look better in my opinion if you have some kind of nipple reconstruction but there’s usually a few operations involved not just one to get the best result and you won’t have any feeling in it at least any breast sensation. the best reconstructions involve tissue flaps from other parts of the body so you also get operated on somewhere else which ups the pain. Yes I think there’s pros and cons
LisaNichole10 - I know how your feeling too. I was extensive DCIS and on the day you were diagnosed, I underwent a full radical mx on my left breast. The way I look at it too is, that if there is any chance of this horrid disease returning, then I’m prepared to have my breast off. I’m not reconstructed yet as have a little bit of invasive there too so chemo ahead. Reconstructions from what I’ve seen and heard are pretty good these days.
If it makes you feel any better, I had my mx on the 8th Aug. 5 days later, I’m at home. Not in pain. Able to do most little things and getting on with it far better than I thought.
The other thing is, I didn’t think I ever wanted to look at my post op scar but I didn’t find that as hard as I imagined either. I don’t love the look, but it didn’t reduce me to tears and throw me into depression either. Your BCN will give you some very useful info. They are all lovely well trained people who’ll be there for you every step of the way. Best of luck. You’ll be OK. It’s not ‘horrendous’. You’ll be amazed at your strength girl. There is also fantastic support here. Lots love x x x
Hi LisaNicole
Well done you for getting on and finding out what you need to know. I honestly cannot comment on WLE and the cosmetic implications i.e. dents etc as I was only ever offered a mastectomy due to the DCIS being where it was and wide spread. In terms of the upkeep, I understand that I will be with my surgeon for the ‘duration’ in other words to ensure that cosmetically I am happy with the results of my surgery and that it is maintained in the future.
To put this another way - I asked my surgeon if he was happy with the results and he said what is more important is that I am happy. He said that five years ago if you had surgery and looked good in a bra then that was that. He said that now, if I say to him that I want to look good naked then it his job to make sure that happens. He said that this is a long term relationship. As with all implants they willl need to be renewed periodically.
I am pleased with the results of my surgery and am cured. I hope this helps.
love Ruthus
Thank you all for your words of encouragement. I was lucky enough to get to meet my plastic surgeon this week and he has described the various options in detail and shown me examples of the results, all of which looked amazing. We’ve got a bit of time now to think about which type of reconstruction to go for - either the one where skin and tissues are taken from the back or a saline implant is put in and gradually inflated - I think the difference is the first is a one step process the second takes two operations. Feeling much more positive about my long term prognosis, so thank you all so much for your help and advice.
Love LisaNicole10