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DCIS

19 REPLIES 19
Lucy_BCC
Member

Re: DCIS

Litlynn

Welcome to the BCC forums, please feel free to call our helpliners to talk through the concerns you have, lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

Take care
Lucy BCC

Litlynn
Member

Re: 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.
Mindy63
Member

Re: DCIS

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.

Danmac10
Member

Re: DCIS

Thanks June that means alot
June_BCC
Member

Re: DCIS

Hello Danmac10

 

Welcome to the forums, this must be very difficult time for you. I’m sure other users will be along to support you soon.

 

In the meantime, maybe you would like to talk things through with a member of our helpline staff who are there to offer practical information as well as emotional support. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

With best wishes

June, moderator

Danmac10
Member

Re: DCIS

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??
Guest user
Not applicable

Re: DCIS

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

Helen15
Member

Re: DCIS

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.
Lakeslover
Member

Re: DCIS

Hi Helen,

I just wanted to say that some travel insurers will not cover anyone with medical conditions, but there are others who will cover people who have had breast cancer or DCIS without exclusions. There is a thread on here somewhere with suggestions of companies to try.

Guest user
Not applicable

Re: DCIS

Hi Helen,

I am interested in why your insurers say you are uninsurable. I was flying to USA about 8 weeks after my mx and informed the insurance company.  My policy states that I am not covered for DCIS but that is all that isn't covered. There is so much confusion around here that it is frustrating.  Holly

Suziex
Member

Re: DCIS

Hi All it's nice to get good responses to my post I do feel sometimes that there isn't much chat about DCIS, I know we are among the Lucy ones who hopefully won't need further treatment, but it is still hard to try and and forget and move on ,I still don't think there will be a day go bye when I don't stop and think of that horrible moment I was told. At that time I didn't know there was some many different breast cancers, I suppose if we could choose which one DCIS is the best one to have. I still don't know if I am doing the right thing in taking tamoxifen but it does help me think I am doing something to prevent getting BC in the other breast. Diamond lady I have just found a really good bra for my stick on, it is an M&S bra T33 07336/100 I wear a size 6 stick on and buy a 34DD iN this bra . I still haven't decided weather to have a reconstruction or not I would like to hear from any body who could recommend a plastic surgeon in the north of the country my specialist centre would be Newcastle. hopefully we can all keep posting from time to time and discuss any problems we have thanks again Suziex.

Diamondlady
Member

Re: DCIS

Hi Susiex & other DCIS ladies.  I had high grade DCIS, 3 WLE's and MX in July this year.  No further treatment was required although I was advised to go on the Gylcaemic Index diet.  I did wonder if I should have been prescribed Tamoxifen as this could 'help' the good breast but Oncologist thinks otherwise.  I feel like an 'outsider' looking in, cannot believe that it was me going through all these not so long ago, until that is I look in the mirror.  I got 2 'stickon' prothesis which can be worn without the 'stickers' but glad to take them off after  8/9 hours. Still experiencing with various bras.  This morning in church I looked down and noticed my good side looking very proud and slightly lopsided, reason is I worn my previous cleavage boost bra. Still upsets me. May opt for reconstruction.  I miss my cleavage and shape, and most of my clothes.  I attend 2 support groups a month and get involved in alot of things now, never did before my cancer.  All the Best everyone.   Diamondlady

 

Helen15
Member

Re: DCIS

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
Guest user
Not applicable

Re: DCIS

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...........!)

Suziex
Member

Re: DCIS

Hi Blue67
Like your self I was told I needed no further treatment. So for the first 12 months I did a lot of research on DCIS and made an appointment to go and see my oncologist this was the first time I had seen him as I was told no further treatment was required so did not need appointment. At this point I also hadn't been told if my DCIS was hormone related , the oncologist went to tell me that because there was no trace of invasive cancer I had not been checked to see if this was hormone positive . I went on to ask further question about DCIS and asked him if some people are given tamoxifen to help prevent a reoccurrence or help to protect the other breast. He told in some cases this did happen. I then went on to ask him if he had reasons why I couldn't start to take tamoxifen for the benefits I state above , he went on to explain all the side affects that tamoxifen can cause and the % of for and against taking tamoxifen, he told me to go home and he would write a letter to my doctor about our meeting and for me to decide if I wanted the tamoxifen. So it was me that decided to start taking tamoxifen I have very little side affects I am a fit person play squash go to gym and walk. The only thing that has happened is that my periods have stopped and I have the odd hot flush but nothing to what you hear about on the forums. By the way I am 53 and was diagnosed 3 years ago. Good luck in your decision do not hesitate if you want to ask me any further questions.

Xx

Blue67
Member

Re: DCIS

Hi Suzie, I was diagnosed with DCIS almost 2 years ago and had a mastectomy and reconstruction. At the time I was told that I needed no further treatment. 2 months ago I went for a routine check up & I asked about Tamoxifen. I had already asked if I should be taking Tamoxifen at previous appointments but was always told that it wasn't necessary. This time the oncologist has agreed to give it to me. I asked why it wasn't prescribed 2 years ago & was told it was protocol? Was you told why you were given Tamoxifen later on? I'm worried that they're prescribing it only because I've asked about it a few times. I haven't started taking it yet as I'm really concerned about the side effects, which I've read can be pretty horrendous. If it had been prescribed to me right from the start, I'd take it no questions asked,but I'm really confused as to why they're given it to me 2 years later. Have you had any side effects? I'm waiting for the breast care nurse to phone me back as I want to make an appointment to see the oncologist. I'd be really  interested to know why you were given Tamoxifen at a later date, as I feel I'm in the same situation as you.

Thanks & best wishes, Sally.

Suziex
Member

Re: DCIS

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

Guest user
Not applicable

Re: DCIS

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.

cazza36
Member

Re: DCIS

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

 

Suziex
Member

DCIS

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.