Confused !
Confused ! Hi, can someone put me straight , feeling a bit confused about my diagnosis. I was told I have DCIS, grade three carcinoma. On reading the explanation on DCIS on this website it says that axilla surgery probably won,t be carried out, but I thought this was the only way of finding out if the C had spread ! Anyway, luckily my lymph nodes were clear & I felt really happy about that, but reading other threads I’m now panicking (again !) Apparrantly there,s a big chance of it returning &/or the surgeon may change his mind about the dignosis ! Does anyone know if the chances of return are greater if it is grade 3 ? Have appointment with onc today & haven,t really got a clue where I stand. Can any of you lovely ladies give me a bit of advice ? Thanks & love to all Lez x
Ask the Nurse Hi Lez
Have you considered contacting the ask the nurse service on this site with your query .
Kind Regards
BCC Host
Hi Lezhop Hi there
Sorry you are so confused by your diagnosis, I think you really need to talk to your consultant.
If its any help I had widespread, high grade dcis, with lymph nodes taken out at the time of mastectomy for testing, which were thankfully clear. Because of this no rads or chemo needed, but because dcis has a high recurrence rate I am on Tamoxifen
Hope you got on okay with your appointment today.
Best wishes
Frenchy
DCIS recurrence rate? Hi Frenchy
Does DCIS really have a high recurrence rate? I was told that with mastectomy (which I had) the recurrence rate was extremely low. Also I didn’t have any lymph nodes taken and was told that they don’t sample lymph nodes for DCIS surgery because by definition it’s “in situ” and can’t have spread to the nodes. Now I’m worried! Maybe different hospitals just do it differently?
Jellyfish
Hi jellyfish Hi
I am only going by what I was told by my surgeon, he told me my chances of recurrence was high because mine was high grade, hence being offered tamoxifen, so it is worth checking out what grade yours was, also whether it is hormone receptive, as this seems to make a difference.
From other threads, most surgeons seem to sample lymph nodes, but how many, seems, like everything else to differ from region to region. My surgeon took half mine, but warned that if these were affected I would have to have radiotherapy.
Different hospitals seem to have their own ways of treatment, and it seems as much a matter of where you live, which is worrying to say the least. If you’re worried I would say get a second opinion.
Good luck whatever you decide.
Best wishes
Frenchy
DCIS grade and hormone status Mine was intermediate grade. After the histology report came back following mastectomy I asked whether the cancer was hormone receptive or not, and was told that they did not test for hormone receptor status with DCIS because it was very unlikely to recur after mastectomy whether hormone positive or not!
My hospital is Charing X in London; I think they have quite a good reputation. But I am quite worried about recurrence and I always nag them about it when I go for my check ups. I think they have me down as a hypochondriac. Now I’m even more worried…
Jellyfish
Hi jellyfish Hi again,
Sorry you are worried, but read the section about dcis on this site, it is very helpful.
It does explain that there are different grades of dcis and yours most probably has been treated according to what they found at the hospital, as there were different factors with mine my treatment will be different.
You could even start a new thread getting other peoples experiences, I’m sure you will find they are all different.
I won’t say don’t worry, because we all do, but I find the further I can put it behind me, the better I can get on with my life.
Best wishes
Frenchy
Hi again Thank you for your replies. Since sending last mail, I saw the oncologist who is now telling me there was no record of DCIS in his records ! Even though I had it written in my diary by my breast nurse!! I now have to wait until tomorrow, because the people I need to talk to are on holiday. In the meantime I have discovered there are different types of DCIS, which can determine the type of treatment. I still haven’t received my ER,PGR & HER status, which would also help in deciding treatment ( I think). The oncolgist is suggesting adjuvent therapy (combination of chemotherapy, radiotherapy & hormone (if receptive). But the thought of having to go through 6 cycles of chemo over the course of 18 weeks is scaring me, especially if it can be avoided. Love to all, Lez x