HIGH GRADE NUCLEAR & COMEDO DCIS

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

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

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

Hi Linda

Thank you for sharing your experience with me, sorry that you had to go through it all, and it is a terrible worry, but thank goodness we found it at early stages.

Wishing you well.

Hazel