Hi I was diagnosed with DCIS three years ago and I keep reading about members having there lymph nodes checked , when I asked if I would have this process I was told that it was not necessary I still worry that this was not done. I opted to have a mastectomy which meant I needed no further treatment. After 12 months I was still very anxious that I had been given no further treatment after a visit to my centre it was agreed that I could take tamoxifen this would help prevent me getting any cancer in my other breast. I find that there is not many posts on here about DCIS and I would like to hear from any ladies who have been in the same position as me . I do know that DCIS is the very early stage of breast cancer and can be treated very successfully but I would like to be able to chat to people in my position. I still have the worry of this coming back, thank you I know I have gone on a bit but I’m sure some of you will realise my concerns.
Hi Suzie,
Because it is contained within the ducts there is no need to check the lymph nodes as it cant have spread there so please don’t worry about that.
My Mum had DCIS and had a lumpectomy and radiotherapy. 3 years later she had DCIS again in the same breast so had a mastectomy this time. i personally believe you did right having a mastectomy.
The fear of it coming back is something we can all relate to. you never want to hear those words again - but every lump or bump sends our head into a complete tizz! taking the tamoxifen and attending for regular mammograms for the other breast is the best way to quiet the worry of recurrance
Hope this helps in some way xxx
I was diagnosed with DCIS in 2009. I had minimaly invasive surgery, then several months later a re-excision, and at that point, I also had a sentinel node biopsy. Directly after surgery I was told that the result of the sentinel node biopsy was negative. After additional tests I learned that the cells of a more invasive cancer were found. Local pathologists were uncertain as to what inpact that would have on my treatment. I made the decision to get a second opinion from the Mayo Clinic. In the meantime I began preparation for seven weeks of radiation treatments. I am now on Arimidex, and will take it for a total of ten years. Like any cancer, DCIS has uncertain moments, but we also may have more choices and the time sort through them. My best wishes to you.
Thank you for your replies it does make me feel better when I have heard from other ladies who have had DCIS. I do feel I made the right decision in having a mastectomy it is three years now so hopefully I will be able to move on I have a mammogram next week on my other breast so fingers crossed all will be well. I still feel that there is not many posts on DCIS and would like to hear from more ladies who have had DCIS?
Thanks Suziex
Hi Suzie,
I was diagnosed with DCIS 5 1/2 years ago. I had never heard of it before and was totally shocked - I felt like I’d fallen down a rabbit hole and couldn’t get out! I had a mx and no further treatment. I asked about tamoxifen but was told that there was no cancer present and so the benefits of taking it were outweighed by the negatives. I have hated going back every year for mammogram and to see the consultant as it reminded me of the horrible experience when I was diagnosed. I now only have to go for yearly mammogram with no doctor appointment unless something shows up. I don’t know if the wait for a letter is going to be worse or better than going back to the hospital every year.
I think the whole thing about DCIS is that nobody knows what to call it - I had it called a pre-cancer, an early cancer and a stage 0 cancer and one doctor told me I didn’t need to worry as I hadn’t actually had cancer. How can we understand if the medics are so confused by it. I still have some off days worrying but mainly now apart from the inconvenience of the dreaded prosthesis I don’t worry too much (until the yearly check comes round…!)
Hello ladies, I was diagnosed with high grade DCIS last year after a routine mammogram, had a lumpectomy, then another to get clear margins and then 15 sessions of radiotherapy. This year, at my first annual mammogram the DCIS was found to have returned in the same breast. I had no alternative but to have a mastectomy which I had 7 weeks ago with an immediate LD flap reconstruction When I had my biopsy they found micro invasions and for that reason I had a SLNB at the same time as the mastectomy where just 2 nodes were removed. These were clear so I was told that no further treatment was needed. I think the doctors feel that as DCIS hasn’t spread there is no need for chemo and when I asked if the tissue had been tested to see if there was anything genetic I was told it wasn’t necessary. Maybe different hospitals do things differently. I have been told that " you absolutely haven’t got cancer", “it’s lucky we got it when we did” ,“there’s something very abnormal going on in there”, “cured!” When I had my radiotherapy last year I felt like a fraud , I only had DCIS after all, most of the other ladies had had actual lumps and were having chemo! I got on with my life and then it came back. Still only DCIS, but hang on, I needed a mastectomy. I still don’t feel as if I have had breast cancer but I have. According to my travel insurers I am now uninsurable for a whole array of conditions. But I am healthy, have been all my life and am on no medication for anything. I really don’t know what to make of this condition. I read that if untreated, high grade DCIS can become invasive in 6 months. Also that because there can be so many small areas its much harder to treat. All I know is that lurking at the back of my mind is the fact that it might come back and I can’t feel it. Thank goodness for the screening programme. Helen
Hi ladies, last year after my lumpectomies I told my insurers ( policy through my bank ) about my surgery and they were very inflexible. I didnt even have the option of paying an excess, they just said that everything relating to cancer of any description, side effects from treatment and surgery weren’t covered. Tried explaining what DCIS is and that having had clear margins i was clear but they wouldn’t budge. I have since cancelled that policy and will get another when I need one. I have seen the thread about insurers and it seems there are some very understanding companies out there. It’s a shame most insurers use a standard health questionnaire.
Hello
I don’t know for sure, I am not a doctor, but I am assuming they found nothing in your breast tissue to concern them.
I had a masectomy on Monday 30th September and went to see the surgeon today. I was told I had DCIS, however there were changes in the cells within the DCIS, these were cancerous. I did have my lymph nodes checked, 4 in all. Maybe they thought I was high risk. My hospital is also very, very cautious. They have put me on Tamoxifen for 5 years. I may also need chemo, however why I do not know as the cells were still in the ducts. I am seeing the oncologist on Thursday. As I say, the hospital I attend are mega cautious. Also I may be a higher risk than yourself.
June
Hi I am newly diagnosed with high grade DCIS (found out three days ago) I have just turned 33 last week. I had a lump which DCIS doesn’t normally present as and then went on the have mammograms on fri which shows extensive calcification, suspicious of DCIS- I had a further 18 biopsies and await results on Friday but will need mastectomy and radiotherapy. The consultant was going to see if I could have an US scan of my right Axilla there and then so I assumed this was normal practice??
Thanks June that means alot
Just to add to the confusion, you can’t donate blood if you have had dcis. So the jury must still be out on this one.
I had dcis in 2006. I had a wle followed by radiotherapy. No hormone treatment. In 2012 I had an invasive cancer in the other breast. It would be interesting to see some statistics on the incidence of invasive breast cancer after DCIS.
Hi. I wonder if anyone can help. I was diagnosed with DCIS in Jan 2010, had MX due to location & lymph nodes checked then reconstruction in 2012. I needed no other treatment as it was not oestrogen fed. Alls well now except I am menopausal & have been advised there is no medication I can take. No even anything herbal. I can’t be the only one in this situation, are there any suggestions.
Litlynn
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Lucy BCC