Confused on what to do next....

Hi Sara,

you do not say where you live in the uk.

i suggest you do your research look at the accrf site where there is a lot of information about treatment options for lung mets.

i have multiple metastases and decided to have RFA in London.

if you can come to the acc meeting on London on May 12th you get the opportunity to ask questions and meet Rob Metcalf from the .christie and hear about the latest research.

Good luck and hope to see you on May 12th

Ruth

Hi Ruth,

Thank you for your reply, I am based in Luton so not far away and yes myself and other half would like to attend the meeting on May 12th. How do we go about it or get details for it please ?

Sara x

Hi Sara,

the information will come up on this site and on the accoi site.

I can forward you details of the venue if you friend request me and private message me you cam send me your e mail.

the day starts at 11.00 and there will be a light lunch provided and the speaker is Rob Metcalf.

it usually finishes around 3-4.

Ruth x.

Hi Ruth,

I have sent you a friend request.

Sara x

Hi Sara,

My case goes way back to 1991 when I was first diagnosed with ACC in my upper Mandible, 5 years later it had metastasis to my Parotid Gland, so like you had to have my Parotid Gland removed followed by 4 weeks Radiotherapy.

Strange it might seem but 2012 I had a CT Scan for an unrelated problem, it came a surprise to me when lung metts were showing on the CT Scan. This was latter confirmed by a CT guided Biopsy.

Next step was a consultation with Dr Mc Kinlay our local Respirity Specialist at The North Hants Hospital.

I’m not sure why but he was against me having RFA, maybe at the time it wasn’t available on the NHS, because of this we opted for Thoracic Surgery which was undertaken by a very nice Doctor Miss Elisabeth Belcher at The John Radcliffe Oxford Hospital. In the March same year 2012 I had an operation to remove tumours in my right lung, 6 months later similar treatment to my lung.

My advice would be talk to your GP and ask for a referal to some one specialising in Respiratory Problems, ask for 3 or 6 monthly CT Scans. 

It’s a tough road ahead Thoracic Surgery is quite invasive but not impossible, remember there is always someone out there worse of than you.

Good Luck 

Roger (age 75)

Hi Sara its Wendy, my husband and I will be at tge meeting on the 12th May. Will lok forwardvto meeting you.

Hi Roger,

Thank you for your reply and apologies in not getting back in touch sooner (busy with work and stuff)

Interesting to hear from different people and their treatments, and from what I have read (wrongly or rightly) it seems each person`s treatment will vary greatly on the individual and make up of the offending cells ?

We have been in contact with our previous consultant who has sent a letter to Dr. Rob Metcalf at The Christie asking for us to be referred, so fingers crossed we get a positive result. And yes there is always someone worse off, onwards & upwards!!

Sara x 

Hi Wendy,

Yes we look forward to meeting with everyone also, is this meeting something that happens once a year or more often ?

Sara x

Hi Sara, 

Meeting is usually twice a year one in London then one later in the year in Manchester. I went to both last year. My husband went to the Manchester one and I think meeting other peoples partner or son/daughter and hearing their side of having someone with ACC helped him. I know it helped me as well.

Hope to see you there

Wendy

Hello

My mom has ACC

What is the best doctor in the world to help??

Has anyone heard of Neutron therapy -views ?

I have  joined up!!

Regards