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My high grade DCIS was picked up by a routine mammogram in January and I have since had a wide local excision with clear margins. I have started taking tamoxifen and am due to start radiotherapy in two weeks. This has been a strange experience as apart from the few days after the operation I have felt well and no different to before my diagnosis. My difficulty comes from being told that DCIS is “not really cancer”. It’s a pre-cancer but my treatment feels like I’m being treated for cancer. I’ve had surgery, I’m on drugs and I’m going to have radiotherapy. Isn’t that treatment for cancer? I’m left feeling like I am making a fuss over nothing. Whilst saying all the above I am generally a very positive person and I know how lucky I am that this has been caught early but I still feel like a fraud.
Hi Carrie60 welcome to the forum.
A fraud you are most definetely not. Who was it said that DCIS is not cancer? It may well be a precursor to cancer so whatever treatment you have had has been to ensure that whatever was there is now no longer there. You will have been under a breast clinic and an Oncologist so you are being treated in the same way as anyone with breast cancer would except the cancer is in situ and not invasive. which is great news.
If anybody tells you you are a fraud refer them to us and we will put them right for you.
Sendign some huge big hugs.
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You are not a fraud and neither am I. I had the same operation as you in July last year as it is a form of early cancer. I just had to get over a blood clot first around the incision site but I also had Radiotherapy and am now on Letrozole as am in the menopause. I started off on Tamoxifen.
Everyone on here are so helpful if you ever need to talk to anyone at all and again you and I are not Frauds.
You take care and here are some hugs for you. )))))) xxxx
I know exactly how you feel. I had an area of high grade DCIS but I was told I needed a mastectomy so had one with immediate reconstruction by DIEP. But nothing else no radiography or tamoxifen.......
Thank you GRANNY59 xx
Thank you Winky49 xx
Your are very welcome Carrie. We all need to look out for each other even if it is just to read to see what is happening on this forum.
I think there are 2 DCIS's. 0 grade DCIS which is not malignant indicating a 'pre cancerous state' which isn't clearly defined and Grade 1 DCIS which shows there is a tumour through a positive biopsy but is still contained within the duct. I don't know if anyone has been given a Grade 2 DCIS and upwards because as soon as it grows a bit bigger it bulges out of the duct to become Invasive DCIS. This is where it all gets so confusing having 2 things being called the same. If you have 0 grade DCIS there is an option to have it surgically removed or a 'wait and see' approach can be taken.
.... still fighting this nasty little critter ....
Jackie was DCIS (Grade 3) Probably because the tumour although only 8mm was also HER2+ and ER8+/ PR8+ positive (see profile)
Mastectomy, FEC-T chemo, 15x Rads and 18 x Herceptin - Then 5 years of Letrozole :(
Don't let anyone get away with saying DCIS isn't really breast cancer :-/
Take care, G n' J
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I think HER2+ is almost always grade 3 Dreamthief
At the end if my 5 years of follow up appointments for DCIS I was told to ‘go and live my life’ as what I’d had “wasn’t really cancer” or words to that effect. Here I am 6 years later with it back again. It’s a bit of a dangerous message really in a way I feel now. The DCIS booklet from Breast Cancer Care I’ve been given this time around on page 2 says “You may hear DCIS being described in different ways such as pre-invasive, intraductal or non-invasive. You may also hear it incorrectly described as pre-cancerous”. Maybe quote that to anyone attempting to make you feel like a fraud. Best wishes xx
I totally can relate to how you feel.
I found I had high grade extensive DCIS a year ago and a mastectomy was highly recommended. It was described as a pre cancer with a high chance of becoming invasive.
I struggled with having to have such a severe treatment for something that was not invasive. I too felt like a fraud, such that I minimised it.
I contacted someone through the Someone Like Me service at Breast Cancer Care who had a mastectomy due to DCIS and her words "this is not a competition" really stuck with me. I am so thankful that this was picked up before it became invasive I used to explain to people that it wasn't really cancer, but now I just say I had cancer and a mastectomy was my treatment.
Please don't beat yourself up about 'only having DCIS' - count yourself lucky!
This week, a year on from my diagnosis I plucked up the courage to walk in to my local Maggie centre for emotional support. I always thought I was "not sick enough" to justify going there. How I wish I had gone thete a long time ago!
WHO TOLD YOU THAT C**P??Just because it's insitu doesn't make it 'Not cancer ' it is and it's generally very treatable. My bcn told me that if you ave to hve cancer this is the way you want it.
You are being treated for cancer because that's what it is.
What you wrote about your experience is exactly me. I too have never considered myself sick enough to trouble anybody. The trouble is with DCIS you don't have any symptoms and feel completely normal. Thanks for reassuring me I'm not the only one. XXXXxx
Very interesting that you you are being made to feel that - but totally incorrect. I had my 1st ever mammogram and nearly didn't go as I figured I'd feel ill if I was ill and I didn't want to leave work as I don't get paid when I'm not in ..... luckily a friend told me off! But same as you, was perfectly healthy throughout.
I got the callback to the breast clinic and I read the Breast Cancer booklet before deciding to go to THAT appointment. It explained the pro's and con's of breast screening. I am one of these people who if "it's going to happen, it'll happen to me" type thing. So, when I read that one of the cons was that some women could end up having surgery for DCIS which never might become cancer, I just knew that if I had the DCIS, it would be bound to be the non malignant and I'd end up having surgery for nothing......
I wasn't concerned one bit about the callback as I figured it was just 'cause they didn't know my breasts (another bit in the letter they sent and my Mum had had a callback with no concerns). So although I wasn't concerned, based on the breast cancer care brochure, I had already made the decision that if they'd picked up DCIS, then I would decline any treatment.
From the Breast Cancer Care booklet "The type, size and grade of the DCIS can help predict if it will become invasive but currently there is no way of knowing for certain in each individual case. For this reason, treatment is usually recommended, but for some people this may not be necessary and might be seen as over-treatment of their condition. You may wish to discuss this possibility with your specialist team."
Well, they did pick up DCIS (4.5cm of it grade 2), but also 1.5cm of grade 2 tumour. I am actually grateful that some of the DCIS had turned into a tumour because if not, I would have just 'listened to my body' and not the specialist team. I wouldn't have realised that I had cancer and by the time I went for the next 3 year mammogram, it probably would have spread.
Considering I had an 8cm WLE, sentinel lymph node removal, I 'only' had radiotherapy and have hormone therapy too - so I guess for those of us who haven't had to endure chemotherapy, we'd all be frauds eh?
Also from the Breast Cancer Care booklet "You may hear DCIS described as a pre-invasive, intraductal or non-invasive cancer. Occasionally you may also hear it incorrectly described as pre cancerous. Both men and women can develop DCIS, however it is very rare in men. As a result of being confined to the breast ducts, a diagnosis of DCIS has a very good prognosis (outlook)."
You're not a fraud, you're just lucky (or unlucky enough to have had DCIS in the first place), that they caught you early. I kept being told told how lucky I was that mine was caught so early too. And hopefully you stay as well as you are now - good luck with the radio. I found that a breeze, but quite a few ladies have struggled with it /fatigue, so follow all the advice you are given with regards to excercise, resting, creams and drinking fluids.
There is a monthly radiotherapy thread - here's March, which may well prove useful for you to read before you start. Also, not mentioned very frequently - I had a dental appointment shortly before radio and she prescribed me special toothpaste Duraphat 5000 and told me to only use non alcoholic mouthwash - Corsodyl. I had to start the toothpaste a week before radio and finish the 3 tubes and then back to normal toothpaste. She also took x-rays to be able to check on my teeth. I had my first follow appointment with my dentist and yay! no problems.
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