Friday, February 08, 2008
Hi, I have just read that DCIS is very curable - is it so for DCIS HIGH GRADE WITH NECROSIS? I have just had 5mm of it removed and am frightened that it will come back, what are my chances??? Thank you
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HIGH GRADE NUCLEAR & COMEDO DCIS
3/ 4/08 4:45pm
Hi Hazel,
I was diagnosed with high gade comedo dcis 7 years ago and had a lumpectomy. Because the margins were not clear enough I then had a re-excision. I have been monitored for the past 7 years and have now had a reoccurance of dcis in the same area, and have undegone the same surgery though my surgeon recommended mastectomy which I refused. I am now likely to start radiotherapy as a "belt and braces" option but I am not at all concerned about the likelihood of reoccurance because it can be dealt with relatively simply.
3/ 4/08 6:22pm
Hi Eileen,
Thank you so much for your e mail, it has given me some positiveness which I have very much needed. It is good to know that they have monitored you so well. Since I sent my post, my situation changed, the DCIS became invasive so I had a lumpectomy, the margins showed signs of invasion, so last week I had a radical mastectomy - afterwhich I was told there were MULTIFOCAL signs of cancer. My results are through next week, so I am freaking out quite a bit. For me though, I refused a second lumpectomy and demanded the mastectomy which if all has gone according to plan should give me more peace of mind. I think I will probably be put on chemo and maybe some other treatments. Did you have any other treatment after the lumpectomy??
What did your doctors say about your dcis being High Grade?? I seem to be one of the few over here with High Grade.
Best wishes
Hazel
3/ 5/08 9:18am
Hi Hazel, so sorry to hear that you dcis became invasive and that you are facing chemo. I know it can be very traumatic but I have 2 friends who have gone through it, and one is 6 years on and in good shape, the other has just finished and her hair has grown back such that she looks a million dollars. She is captain of our Ladies golf club and in great form.
as far as my dcis is concerned I didnt know what questions to ask the first time it was diagnosed. Iwas being regularly monitored because I kept getting cysts. I just went through the recomended procedure which was lumpectomy, but the margins were not clear so I had a re-excision which then resolved the problem. I had no further treatment after that for 7 years apart from annual mammograms. In August on my regular check up they found a reoccurance. My surgeon agreed to another lumpectomy though I am of average size I think( 36d ) and the same thing happened. He then told me I should have a mastectomy but I refused as I thought it was a sledgehammer to crack a nut as there is only a relatively low chance of it recurring (maybe 22%) and then only maybe a fair chance of it becoming invasive. This was when I found out about the comedo grade.
Anyway I had a second excision (again) and am now recommended for radiotherapy. The Oncologist confirmed that the second dcis, although high grade, was quite small and therfore he thinks that radiotherapy is the preferred treatment. It is also oestrogen receptive but I dont think will accept any tamoxifen or similar. I had the last surgery on the Friday before Christmas (what timing) and go to the hospital to arrange the radiotherapy treatment next week. Still not sure whether to go ahead with the treatment or take my chances which I think are very much in my favour.
I wish you all the very best luck, keep positive because I'm sure that a positive approach will aid you recovery. By the way have you researched vitamin B17? I think it might be illegal in U.S. but you could look up a guy called Phillip Day its certainly food for thought.
Eileen
3/17/08 4:42am
Hi Maureen, sorry I didnt get back to you for so long, couldnt find the site for ages. Hope you are well, and I will look into the B17 you mentioned. I want you to know that I had the mastectomy, the operation was bearable, but the mental hysteria I went through was too much, I was convinced I was going to get bad news, and was in a type of grieving for my kids, so it was quite horrific for me. Anyway, after the mastectomy - 2 weeks after, I got my results and they were excellent - the doctor said I had an excellent prognosis - FOREVER -the lumpectomy had apparently taken it all, but after they thought it was possible a bit had gone beyond the margins, seems it hadnt. I had a multi foci element - that proved negative, as did everything else. So, its wonderful news. I have been put onto Tamoxifen for the next five years and will be montiored closely. I feel like a new woman. Thanks for your posts, they did help.
Good health to you.
Hazel
4/21/10 2:00pm
Hazel,
I also have high grade DCIS - Grade 3/3. I had a lumpectomy in March with re-excision in April because of a not so clear margin. It did not invade but everything I am reading states that high grade DCIS has a higher recurrence rate. I am scheduled for radiation and then Tamoxifen but I'm not sure I want to take the Tamoxifen. At the biopsy I was a negative receptor but after my lumpectomty I was a low positive receptor. I don't know what to do.
Maureen
4/21/10 3:50pm
Maureen, even high-grade DCIS has a low recurrence rate; to find out exactly what your recurrence rate is, under a variety of treatment scenarios, please ask your oncologist. If you don't want to take tamoxifen, which is the usual protocol for pre-menstrual women with ER/PR+ cancer, then you might want to consider a mastectomy, either with or without reconstruction. Your oncologist would probably be more willing for you to skip the tamoxifen if you had a mastectomy. However, a mastectomy is much more aggressive surgery, with longer-lasting after-effects, than a lumpectomy. Is there some reason you don't want to take tamoxifen? PJH
4/21/10 4:17pm
When they did my original biopsy it came back as receptor negative but after the lumpectomy it was low positive receptor. I don't know if it will be beneficial enough for me to outweigh the risks involved with taking it. Also I am on a low dose anti-depressent and I read yesterday that taking the Tamoxifen with that is not ideal.
Maureen
4/21/10 5:13pm
4/25/10 3:55am
Dear Maureen, Ihope you are doing ok. I just noticed that on your post it said that you did not have such a clear margin, that too was the same with me, by 1mm and this pushed me to a Stage 1 and so I was given the tamoxifen, even though it was such a tiny size, it made the difference. I cannot advise you, I just recommend that you double check and question everything.
I wish you well.
Hazel
4/ 9/08 11:37am
Hazel, Like you I was diagnosed with DCIS back in October 2006. Mine showed up on a routine mammogram; no lump could even be felt. I underwent a sentinel node biopsy and lumpectomy, did not get clear margins, so went back for re-excision in December 2006. Pathology showed Comedo, high grade. My cancer was estrogen/progesterone receptor negative so tamoxifen was not an option. I had six weeks of radiation. So far, my six-month mammogram/ultrasounds are OK. There is one spot they are watching, but both my oncologist and radiologist feel it is a hematoma from the surgery as it has gotten smaller over the past six months. I go for mammograms every six months, see my surgeon every six months and my oncologist once a year. Like you, I have this fear in the back of my mind that it will come back. I guess that's normal though.
Good luck!
Linda
By Hazel— Last Modified: 12/19/10, First Published: 02/08/08
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Hello, Hazel. Welcome to our community.
Your question about DCIS being curable has interesting timing, as our Expert Patient PJ Hamel has just written on this for us. See:
Is Breast Cancer Curable?
http://www.healthcentral.com/breast-cancer/c/78/20174/breast-cancer/
Although PJ focuses on breast cancer more broadly, I think you'll find what she has to say helpful.
Keep us posted on your progress. Write again soon.
Best,
Maria