Hi,
I have just been for my 6 month post treatment check up, believing I was fine, after scc diagnosis in Nov last year. I had a partial glossectomy, radio/chemo and it seemed to have worked. Ct scan shows no cancer in head and neck, but to everyone's horror, mets in both lungs. I am 37, with a wonderful 10 year old daughter, fab husband and family and despite the 3-6 month indicator they have given me, want (as would anyone) to prolong my life as long as I can. The doctors say that chemo (cisplatin & 5FU) would be for symptom control but would not 'buy me' any time. As I feel as fit as a fiddle at the moment, they suggest no action until symptoms and then we can decide if I could cope witht he chemo/if there was any point, etc. I don't intend to lie down and fade away just now, but any thoughts on whether just doing nothing is sensible? I have to admit, I'd prefer not to have chemo as I don't want to spend whatever I have in and out of hospital feeling miserable. Any experieince on the benefits re- symptoms, wiould be very welcome. Thanks!
Lousy to have to be here on this board isn't it?!
Georgia

Georgia,

I am sorry to hear you are going through this!! My first thought is this " Get a 2nd OPINION !!

I would not wait for something to get worse. Seek out all the information you can find. Then you can make a better decision for your self.

I will pray you find a Dr. that knows more than the other one.

Take care,
Diane

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

Georgia,
So sorry you are on this board and will keep you in my prayers. I agree with Diane. I would get a second opinion ASAP. I know everyone has their own experiences when it comes to this cancer but I had a friend who was given a similiar diagnoses at a CCC and went to another major hospital and received a completely different option for different chemo drugs and is still doing ok today. My only point being that getting another opinion can make all of the difference in the world. I would not just sit back and see what happens.
Best wishes Kim

Kim it is not that easy for us in the uk.The national health service decrees which hospital you go to and which doctor you see,and the only way you can deviate from that is to go privately and pay for the consult and tests out of your own pocket,unless you have chosen to take out private health insurance.Even so,unlike in the USA we cant ring up doctors and CCC's and just ask to be seen.

Georgia, Have to tell you to keep the faith I truly believe I am still here today because of that and family and friends! I'm a 2x survivor. I first had my left manidable removed in 85, after radiation in 82, for spot on tongue. It did not come out again until 2004. I was beenng preoped for next day surgury and they came in and told me no go. My lungs were full and no scense putting me through jaw bone removal if my lungs were full! I then had biosy on lungs and it turned out to be fungus! Very common is some people. Well I'm here to tell you I did have the jaw surgury and mind you there is a lot of complications, but I am stll here today! Just get it rechecked and fight hard for your life! I did! Miss Vicki

Thanks for your thoughts and I will certainly be asking many more questions this week; we only had about 10 minutes with the doctor and during that time we were, naturally, in shock. I feel as fit as a flea (!) although since they told me, my shoulders are so tense and I'm scared of every twinge in case it's a sign of growth. They did say that I might not have any symptoms for a few weeks but now I daren't take a deep breath in case it hurts. No discomfort in my shoulders when I wake up, but as soon as my mind starts racing, I feel like I have 'stitches' under one shoulder, although the opposite side to the lung they say has the most cancer.
I suppose that a CT scan is fairly conclusive? Would a biopsy be worth trying, given that it appears to be in two areas, one extensive in one lung and one a patch? I asked if it could be anything else, but they said, very gently, 'virtually nil chance'
Odd to feel otherwise well when you have been told you could have weeks to live, though isn't it? I have healed so well after the surgery and had just returned to work, feeling fine.
Ridiculous I know but I kind of wish I could just ignore it and hope it heals itself! Ah, wishful thinking!
Wishing you all continuing good health and sunshine.

A biopsy seems like a pretty reasonable request. I have heard that infections look similar on a CT scan. 'Virtually nil' still leaves the door open in my book! I hope it does in yours too.

Take care!

Georgia, I wanted to tell you to get another opinion. My daughter has now been told twice she may have lung mets, but with antibiotics they were smaller, thus they again are saying due to infectious process. This past time, it was the 'big guys' at U. of chicago, We essentially were sent home from treatment, did IV antibiotics at home plus one in PEG and a week-10 days later, improvement in her spots. Just went back today to restart her chemo/radiation.
I see it has been awhile since you posted.....hoping for an improvement in your news. (I thought I'd posted a few weeks ago...!!)