Hi
I have joined some time ago hoping that I would have nice and positive stories to tell. My treatment for tonsil cancer which was made up of chemo & radio theraphy finished in March. I lost 30 kg and had additional problems with anemia. I just managed to eat semi normally a couple of months ago and put 4 kg back !! & I was over the moon. A routine CT Chest Scan for something completely different revealed 2 nodules in my lung & was diagnosed as secondary Lung Tumour which I have been told is terminal. I received the news a couple of days ago and I don't think I will ever come to terms with this. Everytime I look at my my beautiful 9 year old girls I burst into tears ! They are doing a full scan next Tuesday and I assume they will be giving me an estimated departure time! I intend to get few second opininions when the report is ready.ANY ADVICE, HELP WILL BE ENORMOUSLY APPRECIATED. LONI

Hello Loni

It is normal to feel down after the devastating news you had. You are still here and there is still much happiness you have in front of you, so be strong. Please read Maurice's Blog. He has had lung metastases and his story will inspire you.

Best wishes

Vinod

Thank you so much Vinod. I feel totally lost at the moment as I havent had the full scan yet. Millions of scenarios going through my head!!
When I get the prognosis I want to get few SECOND OPINIONS including from Cancer Specialists in other countries. This is my life and I want to explore every avenue just in case. The problem is I don't really know how to go about it? Can you point me in the right direction or give me any advice?
Thank you again and again for replying to me
All the best LONI

Hi Loni,

I am desperately sorry to hear your news, but so glad toread Maurice's update. I too have read journal articles that suggest some people can have long cancer resected.
My advice would be
a) make sure that the medics you are talking to now are lung experts..cant remember the correct medical terms - i.e. not the H&Neck people..
b) press them about possibilities of resection on NHS or otherwise (sometimes I fear the options you are given assume that you will be having treatment within the NHS which may not offer all the options that are out there
c) try and get in touch with a guy called BillC on the oral foundation website. He had a lung nodule appear that disappeaered with chemo - so find out about his chemo regime before you meet medics here - something to be able to tell them about and also see what he managed to find out as I think he did quite a lot of research about bet medical centres,

Thinking of you
Big hugs
Cath

ps there is also a lady called Iris on the Yahoo tonsil cancer support group whose husband was diagnosed with a spread to the lungs a few years back and there treatment plan has been interesting and complex, but it is worth talking to her.

Also as others on the other site said, you need to have a biopsy to be sure it is cancer. Quite a few people there have had nodules that have turned out to be benign.
Cath

Thank you Cath.It's so nice to hear from you. Any idea of HOW I can get in touch with BillC?
Loni

Hi Loni

Sorry to read the bad news
I am posting a couiple of links one is for a Germany doctor a leader in laser resection with a good record for treating lung mets Prof Rolle

Seond possible treatment is Photo dynamic treatment PDT big article in yesterday Sunady mail. If UCL in London seem to be very much up on this sort of treatment.

The link shown also give a direct contact to his email address. if you google him much more info is available.

I wish you all the very best.

Kindest regards


Tony

Thanks ever so much Tony. I can't see the email address? Is it on the link for the German Doctor?
You can email me on : lonitravail@btconnect.com if it's easier?

Sorry for bothering you with this.
LONI

Hi Loni

Have email you more info, Rolle email address is

dr.rolle@fachkrankenhaus-coswig.de


Very best to you.

Regards


Tony

Why would you get a depature time I have not? I had mestasis to lungs a year ago, to hip in March and now left Kidney?

It's been two years and I was originally diagnosed to Tongue and lymphnpdes?

Pam C

Hi Pam

You'd been absent for a while--I was getting worried about you.

Sorry to interrupt the thread.

Hi Loni
I'm so sorry to hear your news. My take on what drs say is this: it might be statiscally true, but that's not me, I'm not a statistic - and neither are you! It might not be true for you. There are plenty of examples of people beating the odds, and I can recommend some good books if you're interested! I have a couple of suggestions for you: you might be a good candidate for PDT (I think someone has already suggested that) Also I recommend Dr Rosy Daniels, she used to be the Dr for the Bristol Cancer centre and is absolutely wonderful. She has her own business now working with cancer patients and alternative therapies.The only problem with her is the cost, but I think it's worth it. To arrange a consultation (I have mine over the phone) call Mike Tooze on 01225 745757. There are some great web sites out there too: Canceraction is good, Canceractive is another, they are both focussed on improving the odds.
Good luck!
Vicky

Hi
Thanks EVER SO MUCH Vicky. I would definetely be interested in the books if you can let me have the details?
I managed to get a referral for PDT, Cyberknife and Laser Surgery. I will definetely contact Rosy Daniels. I need as much info as possible before I decide the course of action to take!
At the moment I don't really know which way to turn and I cannot seem to come to terms with the reality. The most difficult thing for me is looking at my 8 year old daughter, knowing that I won't be there for her for long....Maybe I'll get stronger when I start a treatment of some sort?

You can always email me the book titles. My email address is: lonitravail@btconnect.com

Thanks again Vicky
All the best
LONI

Well done Loni for getting the referrals! Sounds as if you are going to be able to explore lots of promising options. If you don't mind me asking, do you think you were referred because you had done lots of research and were able to direct the process? And are they on the NHS or have you had to go private?

Hope it all goes well for you. I can't begin to imagine what is must be like trying to be strong for your daughter.

Take care and keep us posted on your progress. Hope you get some treatment started soon.

Best
Cathy

Hi Cathy,

I have been researching the possibilities and also because of all the encouragement I received from fellow cancer patients I summarized the alternatives & consultant details. I have private insurance but until I know which treatment combination to go for I will not know if I am covered? Unfortunately the referral pack went in the post on Wednesday & with the current weather it could be sometime before I see all 4 consultants and try to make an informed judgement of what the best course of action is.
Thanks for all your kind and supportive words.
HAVE A NICE WEEKEND
LONI