Hi, I am new to the forum. I don’t attend groups etc so this is my first time doing something like this.
Can anyone give me advice on treatment please:
My her 2 positive returned in 2019. (Original diagnosis 2014. ) I had 6 rounds of docetaxal, then herceptin and pertuzanab. That changed to phesgo but the tumour which is in my supervacular fossa lymph node just above and under my collar bone started to grow again and I was put on kadcyla which I have been in for just over 4 years. I have since had an MRI scan which showed another tumour which is deep below my original one. Head and neck surgeons will not go near either tumour even to biopsy as where they are in considered high risk. Anyway the MRI shows the tumour has grown and is bigger than the CT size. It appears kadcyla has stopped working. I have not had treatment since July ad my platelets were low but are now improving. My oncologist is off sick and I have only been offered kadcyla again and told I need another CT scan ( I had one in July) and another full body MRI which they won’t do until end of October, although the one in August was just my neck???
I feel that the hospital are not offering me anything and have no plan. I have asked about Enhertu but it hasn’t been offered until more scans are done. I am confused and feel like they aren’t telling me something or delaying things for some reason??? Meantime I am without any treatment, no oncologist and no idea of what the plan is or if tbe cancer has spread. I am scared and frustrated as I feel I am constantly advocating for myself which is exhausting! Can anyone offer any advice or insight. Thank you.
Well done @doavali for reaching out on this group. I always consider it a brave move for anyone but especially those that aren’t comfortable in groups usually.
I’m sorry I cant offer any advice as I’m still relatively early in my treatment. I’ve only just finished chemo and ops for my cancer but I didn’t want to leave this thread unread.
All I will say is keep advocating for yourself, keep making noise for yourself. Keep calling your local oncology team until they can give you an appointment. I guess with waiting lists and how busy our hospitals are sometimes you really do need to spell it out to them how anxious you are. Please don’t sit back and wait for them to notice you.
There is a very common thread on this forum for people with your cancer type so if you dont get many replies here please post there and I’m certain you’ll get more help
Sorry to hear how you are feeling about your treatment.
One point is Enhertu only works if low estrogen positive and not 100% negative as I am. So it doesn’t work for everyone. I enquired about it months ago and sadly I’m 100% negative.
If you don’t know your situation regarding any drug then I suggest you phone and ask the oncology nurses or the consultants secretary and asked to be referred to a MDT or another consultant.
One other thing one could do is to contact the local cancer organisations who may be able to offer further localised knowledge to assist you in getting quicker answers to current and possibly future issues/ concerns.
When I was in limbo with my consultant off …I did exactly that phoned and spoke to the nurses who transferred me to speak to another oncologist specialist.
I’m sorry to hear this. They should be telling you what’s next or how they’re going to work out what’s next. Can you speak to a nurse? Would you consider putting in a PALs complaint or switching oncologists or Trusts?
