I have recently been diagnosed with IDS. Grade 3 - tumour 23 mm and 8mm. I have had mastectomy. I am HER positive. I had no node involvement but positive for LVI. Does all this give me a bad prognosis. The oncologist didn’t speak about prognosis. Having a heart scan today and start chemo next Friday.
If anyone has been in the same boat can you please let give some advice. Have two teenagers and trying to be sting in front if them.
They also wouldn’t give me a ct scan before chemo as no lymph node spread - is this the norm? I asked the breast care nurse and she said the same. But if I’m LVI positive surely they would have.
Sorry for rambling so terrified.
Alison x
Dear Ali24
Welcome to the forum but I am sorry you are feeling so scared. It looks as though your previous post wasn’t noticed- you might find it helpful to post in the Chemotherapy monthly threads section as these seem to be the busiest areas of the forum. I have attached a link to the thread started by members who began their chemo in March. Just post on there and I’m sure someone will soon be along to welcome you.
As my colleague mentioned you could also contact the Helpline for information and support. The opening times are 9-5 on weekdays and 10-2 on Saturdays. The number is 0808 800 6000
Very best wishes
Janet
BCC Moderator
Hi there,im her2 pos an and have 13 node involvement. I had 3tumours the biggest being 5cm and also tissue surrounding breast and nodes had cancer in. I have 3boys,the youngest being 2yrs old. I was told i would not have any further scan had my nodes been clear(thats a good thing) but i went onto have a ct scan cause so many nodes involved. What is Lvi positive do you know? But anyway my point is i am still being treated with the goal to cure me in next year. Being her pos gives you more drug options than being negative so thats good too. If im being treated to cure with 13 nodes affected and her2pos also.So i should hope your prognosis would be better than mine and mines not bad at the mo. I help this helps but as i dont understand what LVI is i cant say much more.Ring your nurse for info that may help alot. I too had mastectomy and start chemo 2mro followed by rads…Its not having enough info that sometimes makes us more scared than we need to be…Hope someone else can maybe help you more soon x
Hi
I was diagnosed November 2012 with IDC 36mm, grade 3. ER+, PR+. HER2 - . Lymph node involvement and vascular invasion. had no CT scan, nor MRI scan. After mastectomy I had FEC-T chemo and now on hormone tablet for at least 5 years - my prognosis is excellent in spite of the fact I didn’t have radiotherapy either. The Herceptin treatment with your chemo puts you on a level playing field with those of us who are hormone positive.
best wishes
poemsgalore xx
Hi Debs, sorry you are on here as well. Hope all goes well with the chemo tomorrow. I will surely be thinking if you.
LVI stands for lymphovascular invasion and it’s another way of spreading. It can bypass the lymph nodes and spreads through the bloodstream. That’s my understanding. I did phone my breast nurse and she said that everything was cut away but stray cells can get into the blood stream. Hoping that the chemo will get rid of it for me.
Good luck tomorrow. Xx