Hi,
Almost a year after a scc diagnosis, semi-glossectomy, radio/chemo, I have just had a check up (no problems we thought) and to everyone's shock, I have mets to both lungs. I am only (!) 37, have a 10 year old daughter, wonderful husband and loving family so am reluctant to do nothing, however, the consultant suggests that I consider waiting until I have symptoms before deciding if chemo (cisplatin and 5fu?) would be worth it in terms of symptom control. As it is, they have said 3-6 months with or without the chemo, it makes no difference to the time apparently, although that seems counter-intuitive.
I don't want to waste precious time having chemo and all that it will entail if it won't help at all, but also don't want to say no if there's any chance of it extending my life ( and quality of life). The recurrence board is so new that I thought I'd try here, I hope that's okay.
Any advice, however anecdotal would be gratefully received. Thank you
Georgia

Wow, Georgia. I don't have any advice, exc. to say that you are one strong cookie. I wouldn't presume to advise you. I just wanted to say that my heart goes out to you to have such a decision to make. The problem is that nobody can see into the future, so you have to use the best advice you can get. I believe that I would be going as fast as I could for a second opinion, to give myself more information upon which to base my decision.

Thanks for your thoughts, I really appreciate you taking the time. I'll let you know!
Georgia

Georgia,

Are the mets extensive? I'm hoping someone on here with more knowledge will give you more information on this. I had a scare with mets to the lungs, but it turned out to be scar tissue. Have you had a biopsy and a definite diagnosis?

Wow, so overwhelming it must be for you. I'm facing my second round with this cancer so I have thought out all the things we think about when we are facing possible death. It's a tough concept to process and I hope you're working you're way through it. Also, my thoughts are with your daughter and husband.

Minnie

Hi and thanks - I am following your progress and rejoiced as you had some good news.
Well, they didn't mention biopsies; I asked if there was any chance it could be scarring or something else but it can't be apparently. The oncologist says it isn't in the field they treated. They are basing their advice on the images and the radiology report.
I got to have a look at it all- what a treat - and it looks like a tiny area on the right lung, but it's more extensive and in the middle of the left. It seems UK treatments are sometimes more reactive than yours in the US, but I do feel that they would have given me a crumb if there was one!
They did only get my results a few minutes before I arrived and were all shocked. No one has even said anything about other scans although we have touched on possible further mets. They did a chest xray and I return in 3 weeks to discuss it further.
The fact that the scans and pre-op xrays were all clear ' is suggestive' that this is aggressive, is what they have said. I am, at the moment choosing to disbelieve
that part and maintain as postive a mind set as I can. Might change! Watch this space!
Thank you for you kind thoughts, and wishing you every bit of strength and success with the treatment,
Georgia

Georgia-
This is Melissa here, we spoke once before over email via the UK mouth cancer board before you first started radiation. I am so sorry this has happened to you.
I have lung mets too, I am on chemo to extend my life.
I

Georgia,
My situation is the other way round to yours! (Lung primary, mets to jaw) and it was jaw symptoms which sent me to the docs in the first place.
Mine is also 'aggressive' and inoperable, incurable, but I was offered chemo straight away to try and halt/slow the growth--which so far seems to have happened.
Like Melissa, the treatment hasn't been anything like as awful as I anticipated and I've had a good quality of life for the last 4 months. I am waiting now for next review and CT scan on Sept 4th.
Where are you being treated in the UK?
I am 20 years older than you and can only imagine how you must be feeling with a similar prognosis.
Feel free to email me if you want,
Brenda

I was reluctant to join in this discussion in view of the outcome for robin,but i have to just say that while our head and neck surgeon muttered about chemo the oncolgy regiatrar dismissed it out of hand.He said it would diminish robs quality of life for his remaining time although your time is longer than his was.
Like you Georgia robs scans pre-op were clear and like you we were shattered to hear he had 4 lung mets.the similarity ends there really as robs neck tumour was so aggressive the lung mets never got a look in.

You are so very young(even younger than Rob was) that if it is only the lung mets that are threatening your life ,then i would insist chemo starts asap,and try to squeeze every last ounce out of life

good luck

liz

Hi again,
Thanks so much again to everyone for taking the time to reply; it means a great deal. I will pm/post soon, but my daughter is due home and has dancing class tonight, so there will be the usual search for shoes which the mysterious 'somebody' will have moved since she last put them away, carefully in her wardrobe.. yeah right!!
Still smiling (albeit slightly lop-sidedly!, hope you are too,
Georgia

Georgia,
You are obviously a bright(or clever as you Brits say), strong and loving person. I really feel for you in your situation. We all live in fear that the other shoe may drop, and yet, for most of us here, it seems to remain suspended, at least for now. You are obviously handling it so well and carrying on with your life and your daughter's life as best you can.

I have no great words of wisdom and I am not the religious type, but I want you to know how impressed I am with your courage and how much I am pulling for you.

Take care,
Danny G.

BTW: What is going on in the UK? It seems like of people here come from England.