I had my Oncology appointment this morning and was told my Oncotype DX score indicated a need for chemotherapy. However, due to having had chemo back in 1994, the consultant is keen to find out what drugs I had back then and what amounts. She said something about there being a lifetime dose limit of one of the drugs, or it would cause irreversible heart damage. She has given me her preference of FEC-T or, if I am not going to be able to have that, then CT. Has anyone had a similar experience? What happens if she is unable to find my records, which would be at a different location? What is the difference in efficacy of the drugs? I have so many questions a few hours later, I know.
Due to breast and lymph node surgery on both sides, I will also be having a Portocath. Can anyone tell me what this will be like?
And, I will also need to self inject daily bone marrow growth treatment. Again, does anyone have any insight?
i am feeling a little bit overwhelmed at present, but not scared. I feel am in good hands, but really want to hear from other women who may have been through this. Thanks you for your help.
Hi Sharlea,
Thank you for your post.
I am sorry you haven’t had any response yet. I am hoping my response will help our members to see your post and share their experience and advice.
In the meantime, please remember that for any clinical our breast care nurses are here and happy to talk things through.
Sending you our best wishes,
Zoe
@sharlea - I’m not sure I can help with all your questions, but I can help with the portocath as I had one when I had chemo. I had terrible trouble with my veins so it was recommended, and it did make things a lot easier. I had the port put in under a local anaesthetic/sedative, it didn’t take long and it was used for chemo about a week after being put in. It was taken out when I had my mastectomy afterwards, and I now have a tiny scar but hardly noticeable, certainly not when dressed. My surgeon was careful where he chose to put it in, so do chat with him/her about position. It was a bit sore after being put in, as you would imagine after a small op, but painkillers helped.
I would hope that your team would be able to locate your hospital notes if they contact the hospital you went to in 1994. I had FEC-T, which seems to be a commonly used combination.
I really understand your comment about having loads of questions as soon as you come out of an appointment - it all seems clear during the appointment, although half the time I think I was in shock, then afterwards I would kick myself for not asking certain questions. What helped me was to get a notebook to scribble down questions as I thought of them, and then the answers during the appointment. You should have a breast nurse to contact with questions, or sometimes you can contact your consultant’s secretary and they will pass on your question to the consultant.
Please ask if I can help with any further questions. I wish you all the best as you go forward. Evie xx