I am so confused about this. Told I have high grade DCIS. Docs said that it was the type of cancer that had not learnt how to spread. But they would know more once they had all the tissue. Had Mastectomy with SNB was clear. When I went back to see consultant he said that they had found a small ammount of DCIS in one of the nodes. The breast was still only high grade DCIS and margins where all clear. Needed to go back in and have lymph node clearance. I am having big problem getting my head round the fact that all i had was DCIS in breast which is not SUPPOSED to spread but then I had it in my lymph nodes. So SO confused. Does this also mean it could have spread through out my lymphatic system.
Anyones thought or help Please
Hi madge
Please feel free to call our helpline where you can speak to one of our specialist nurses about your concerns, the number to call is 0808 800 6000, weekdays 9-5 and Sat 9-2.
Take care
Lucy
Hi I was cofirmed with DCIS insitu on the 18/6/10. I had masectomy and reconstruction with LD Flap on tne 3/8/10. This was because I had strong family history,1 sister died of BC 2008,another sister with BC 5 years on. Docs told me at beginning I would only maybe need some radiotherapy but when I went for my pathology report they said it was 6cms radius DCIS but with a small tumor there,grade 2 nothing in my nodes, clear margins. Waiting to see oncologist as they said I might need chemo. Don’t no what to think as at the first APP said that no way would i need chemo. Is it because of the tumor. Very confused.
Hi bellakate,
Welcome to the BCC discussion forums, I’m sure you’ll get lots of good support from the other users of this site.
Could I suggest that you give the helpline here a ring and have a chat with one of the staff with your questions. Calls to the helpline are free, 0808 800 6000 lines open M-F 9-5 and Sat 9-2.
Hope this helps. Take care,
Jo, Facilitator
Hi I was diagnosed with DCIS last week. I had a routine mammogram and was recalled, I had a biopsy. The results were DCIS in my left breast.I had an MRI yesterday and have to wait for the results. I cant think straight. There is so much information available that I am confused and scared too.
Hi Spotnot
I was diagnosed with DCIS in my left breast at the end of January 2010 and after the various tests had a lumpectomy at the end of March and then had radiotherapy. I’m now on Tamoxifen for 5 years.
The unknown is awful, but it does somehow get easier as you find out more about what your treatment will be and you can start to take “control” back. When do you get the results of your MRI?
SG xxx
Hi SG I get the result on 15th but i know I have to have a "wire guided excision " and lose my nipple as it is just behind or even a masectomy.Do I get a choice and which is best? I have spoken to the breast nurse and I am going to go in to discuss my options. I am not a large lady and the thought of a disfigured nippless breast horrifies me. Have just had a phone call. The op is scheduled for 30th, now i feel really shakey.
Its like a nightmare, did you get a choice of treatment? Spotnot xx
Hi Spotnot
If you’re having a wire guided excision I think that means the area of tumour is very small and they need the wire in place to show the surgeon where the bad cells are. I had this, back in June and the wire bit is really not that bad. It’s very fine, you can’t feel it go in.
I had a choice about where the scar was made, but my DCIS was not behind the nipple so didn’t have to decide to have it removed or not. I found the breast care nurses and this forum really helpful for getting info.
You said you’re going in to talk it over so good luck with that. Make a list of questions to ask and also take someone else with you to help you remember the answers afterwards!
Let us know how you get on,
Susie.
x
Hi Spotnot
I had the wire thingy too. I was dreading it, and they did have difficulty getting it in the right place because it was behind some other blobby mass which kept moving around, however it didn’t hurt and they taped it over after so I didn’t have to look at anything sticking out(which was the worst thought for me!) Like Susie, I didn’t have to have the nipple removed because mine was a bit further up, so they managed to just cut around the edge of it. I’ve got small boobs so was worried I would also have a big dent when they had cut it out, but actually there is a sort of ridge that goes across the boob, but its hardly noticeable, and it seems to be getting less noticeable over time.
The surgeon did say to me that they would try to save my breast, but if they didn’t get clear margins first time round they would have to do a mastectomy and recon at the same time.
I did watch Embarrassing Bodies last week though and there was a woman on there who had reconstruction years ago, and at the time refused a nipple. They made her a new nipple from her own breast skin which looked fab!
I hope you have managed to talk it over with someone now and they’ve put your mind at rest!
SG xxx
Dear All,
Most of the time at the beginning, we were told that DCIS is a pre cancerous thing. But there are several types of DCIS, one of which is comedo necrosis, I think the cells proliferate faster and is more aggressive. I read on some oncology journals that most DCIS comedo necrosis becomes invasive ductal carcinoma if treated late. In my case although the biopsy result showed high grade DCIS comedo necrosis, but after the mastectomy the histopathology of the specimen showed that there is an invasive ductal carcinoma in addition to the DCIS comedo necrosis.
Regarding wire guided biopsy, I was told that the calcification of DCIS is like clusters or grains and difficult to get. So core biopsy (with the large needle) does not always obtain result. I had core biopsy with inconclusive result and had to have the wire guided biopsy in the end. I think wire guided biopsy is less horrible.
Best wishes,
xx
I was diagnosed with high grade DCIS 3 years ago. I was also informed that if allowed to develop, the cells would become very fast growing and aggressive. My surgery included the removal of the nipple and areola as most of the DCIS was in that area. I was not upset by the result and adjusted to it very quickly. I was offered tattooing several months later and the result is very realistic. With hind sight, I would not have the tattoo again as I had adjusted well to the look of my breast but I had it done because the offer was there. Surgery was followed up by 25 sessions of radiotherapy and I now have annual mammograms.
I hope everything goes well for you xx
I had my cancer removed with the wire as the area was very small and difficult to locate.Had previously had a wire biopsy so knew what to expect. Did not hurt having it inserted. Op went well clear margins and no spread to lymph glands. That was ten days ago and feeling ok still a little sore and somewhat tired but relieved that no more surgery required just rads and tamoxifen. Hope your outcomes are good too.
Hi
I had my op April 2009 with the wire thingy. It was a little painful and I did feel quite sick. However once it was in I was fine. Had the op and was told that they took a larger area as it was near to the chest wall. My breast is slightly deformed (I’m quite large) but the radiotherapy I had afterwards caused me more probs. I had radiation burns which didn;t clear up for 4 months. I was asked if I wanted a mastectomy (more as a matter of course than anything) the doc saud they had to give me the option. Unfortunately I didn’t een really think about and no one really discussed it with me. I do feel now that I may have rather had a mastectomy with reconstructive surgery. My breast tissue is shrinking and hard and I am very conscious that it smaller, also very difficult to get bras to fit.
I would take your time and consider all options. Hope all goes well for you. x
Hi Dizzyrunner, I find myself in a similar situation to you, I recently underwent a wide local excision for high grade DCIS. Last week I got my results back and was told although the margins were clear, the area involved was quite large(42mm) and so I would need to consider one of two options, either radiotherapy followed by close checks, or a mastectomy. How do you make such a choice?It makes it harder knowing the cancer was not invasive, but having read about potential long term side effects of radiation therapy I also wonder if a mastectomy would be the best choice. My other concern is that in the last two months since being recalled from my initial routine mammogram I have thought of nothing else but breast cancer, to such an extent that I have;nt even started any christmas shopping!I;ve wished every day away waiting for the next round of biopsies/consultations/results and I know that as radiotherapy does,nt eliminate all chances of it returning, can I stand the continued worry every time my six month checks come up.What do I do, My consultant said take my time deciding but I struggle to decide which take away I want on a week end, this is a decision way out of my league.