Hi
I’ve today been diagnosed with ILC
all over the place mentally
one minute strong then catastrophising and terrifying myself my googling things
as you can maybe see from the time can’t sleep!
heres my story so far and I’d love to share notes and especially love any reassurance
noticed a lump about a month ago
a mammogram last week showed nothing , neither did my routine one in january
a ultrasound last week did show a suspect lump (the one i felt)
axial looked normal on ultrasound
biopsy done then
results today show ILC, grade 2, early stage ( he wouldn’t give a number)
its oestrogen positive don’t know yet about herceptin (I was told ilc usually negative)
plan is mri tomorrow to check size and location and to check the other breast and lymph’s before probably lumpectomy in july
then radio then meds for 5 years
i think i can handle all that and actually wondering if I’d be better with a mastectomy as this kind of BC notoriously hard to find …..any thoughts?
also I’m completely freaking out that it’s spread, sounds silly but now I can feel like my underarms are swollen! And I had awful heart burn earlier this year which I’ve just found out (thanks google )is a possible symptom of spread in ilc. I’ve been fit and well my whole life
oh and now I’m also stressing they will find it in other breast on mri
basically just having a middle of the night complete whitey
lonpve to compare notes or take advice
thankyou
Hi c22
Sorry to hear that you didn't get the news you were hoping for and no need to apologise for saying it like it is for you, we've all been there at one time or another. I had to have another operation after my operation last May as there was cancer in the lymph node the surgeon took so your not alone in having to have a further operation.
I know the thoughts of chemo is frightening but while I won't say it is easy it is doable.
Wishing you the best of luck with your second operation.
Best wishes
Daisy53
Hi homasaah
Sorry to hear that you are struggling after having a mastectomy. You might find it helpful to ring the Macmillan helpline on 0808 808 00 00 and talk to someone about how you are feeling. They can even arrange counselling for you if you wish.
Hope you feel better soon.
Best wishes
Daisy53
Hi c22
He had to go in to remove my lymph nodes under my right arm and to remove a small tumour in my left breast. I started chemo about three months after the operation, I had the operation in September and started chemo in November. I had very few side effects, just slight nausea and an upset tummy a couple of times.
If you are having chemo your oncologist will take you through the possible side effects of the drugs you'll be getting. You will be given a prescription for anti-sickness meds to take if you have any side effects either at your first meeting with the oncologist or after your first chemo session. You will also get numbers to ring if you are struggling with any side effects you may get, one will be for the chemo ward you will attend and one will be an after hours number.
Wishing you the best of luck with whatever treatment your oncologist puts you on.
Best wishes
Daisy53
I finished chemo at the end of January and apart from getting tired I'm feeling fine now.
I was able to carry on with my life during treatment, (I did) though I did take Sick Leave from work.
I started losing my hair after my second chemo so my mother shaved it off for me. I wore turbans whenever I went out. It's perfectly ok to ask me, I like to give people the benefit of my experience.
Daisy53
Ok. Got it. I think I’m just reeling as I didn’t see the chemotherapy coming as no one had mentioned it until now
i just feel like I was only being brave because I didn’t think that what was coming was going to be too bad but now I don’t feel brave at all. I feel more terrified than ever, so it’s very very good to talk
i notice you started the chemo three months after the operation. Is that quite normal??
are you done now with treatments and all clear?? 
