Confused on what to do next....

19 replies
3 subscribers
34173 views

Hi all,

I am new to the site and as my subject title says a little confused as to what to do next.

Diagnosed Low Grade ACC in left parotid gland Jan. 2015

Removal Feb. 2015 with 6 weeks of radiotherapy ending in June 2015

Routine chest CT scan offered in December 2017 of which showed multiple & bilateral lung metastases, ranging from 9mm, 7mm and below in both sides, approx. 10 at present

After initial results had a chat with our head & neck specialist and they have said that there is nothing that can be done as they do not know enough about ACC to offer any kind of treatments, or as the letter officially says " no known chemotherapeutic drugs to control or slow down the lung mets".

So here I am trawling online trying to find out what I should do next and see if there is any information I can find out to move forward rather than just do nothing which I feel I have been left with as a choice.

I have not had a biopsy of the secondary tumours as they did not think it would be helpful, so I do not know if I should push for a biopsy or just leave alone as would disturbing the tumours with a needle be asking for more trouble ?

Secondly, should I be pushing to be seen by a lung specialist team rather than my original head & neck team now that it has been moved to my lungs.

I think I am going to try and push for getting all my notes about me electronically copied and sent to me and I will look around to try and find alternative answers / solutions, has anyone successfully obtained their own notes ?

I have also seen the the Christie Hospital in Manchester seems to be very knowledgeable with ACC, has anyone had any dealings here in one way or another ?

I hope I have not bored you all with this semi long post and I apologise if I have not followed the forum rules or found previously posted information, my only excuse is I am not in the best frame of mind at present and feel slightly let down.

Thank you for taking the time to read this far and I look forward to hopefully receiving a reply.

Kind regards,

Sara x

Anon123 over 4 years ago

Hello Sara,

I realise your post was in Feb 18 but I just wondered what intervention, if any, you had for your lung mets. My wife had total parotidectomy in Jan 19 (ACC T4 N2 M0) and will have another chest scan at some stage this year

thanks

ruthjp over 4 years ago in reply to Anon123

Hi,

I have had RFA for my lung mets the NHS will fund it if there are 3 or less and 2 cm or less. My acc was in my R submandibular gland

I also had 6 weeks radiotherapy

Ruth

Anon123 over 4 years ago in reply to ruthjp

Hello Ruth

Many thanks for that information. I notice you say your bio mentions lung and brain mets. I wonder if you would be able to explain whether you were aware of the mets from how you felt/specific symptoms or whether it was picked up from scans. I appreciate you may not wish to go into detail on a forum so I fully respect that you may not respond. It is so difficult to find other people who are ACC sufferers

thanks

ruthjp over 4 years ago in reply to Anon123

Hi,

the lung mets were found on a CT scan. It is good to have regular scans otherwise I wouldn’t have known they were there.

i have been having double vision for 2 years and then headaches as well I asked for an MRI which showed up the brain mets

Ruth

Anon123 over 4 years ago in reply to ruthjp

Thanks for that,

with regard to lung mets, we were advised by The Royal Marsden that treatment by RFA was not a recommended treatment option.

Can they help you with the brain mets? What do they recommend?

Pblaky over 4 years ago in reply to Anon123

Hi ,

Since Feb 2018 I went to see Dr Metcallf at Christie Hospital in Manchester. I had my tumour profiled and having Notch check to see if Im qualified to be in any trial drug, but so far not matching anything.

it has been 2 years my lung mets are all growing in size with one of them nearly 3 cm and I am still being told is to observe.

Sara

ruthjp over 4 years ago in reply to Anon123

I have been told radiation is not appropriate as it has spread too much. They want me to take lenvatinib which I have now been on for 2 months I will have a CT and MRI in March to see if the mets are growing

Ruth

ruthjp over 4 years ago in reply to Anon123

You will be told different things by different people. You can get a second opinion. Chris Nutting who is the head of head and neck at theMarsdon he advised me to go back to Alice Gillams and have more RFA. I paid privately to see him and privately to have the treatment at Harley Street. The NHS takes a hard line on treating lung mets and the oncologist and head and neck team will tell you to watch and wait which means do nothing until the spread is extensive. I think I have done well wit controlling the mets for 10 years

Ruth

Anon123 over 4 years ago in reply to ruthjp

Thanks very much Ruth

More from this forum

Confused on what to do next....