I had my second radiation treatment today and afterward my wife and I set with the radiation oncologist. He told us that the biopsy of the pulmonary node had come back positive for cancer. This, he said, puts me in the 1 year average expected lifespan. I think I'm still numb. He said that since I haven't had any therapy to speak of his recommendation was that I continue with radiation and the 3 big bags of cisplatin and after bag 2 we could reassess. I don't want to become just a bunch of symptoms and side effects. I don't want to become a burden on my frail but PRECIOUS wife. Everybody dies, I get that of course I just want to get out of here being more positive memories than heartbreak. BLAH!
Waldeau no one can decide for you but you never know what effect your treatments could have and no dr. Can say for sure you're going to die... There are trial drugs that may work on your node. Im sorry for the news you received but please don't give up hope. Drs. Are educated surely but they can never bee 100 % certain. Hugs.
Waldeau,
Help me out here. My tumor as a node that wrapped itself around my corotid. My only option was radiation. I want through 33 treatments of IMRT at the University of Michigan. They did not get all the cancer. This was my second round of radiation as I had it 2 years earlier for the primary tumor on my soft palet.
U of M said at the end of treatment that I could recieve no more radiation and I had about 9 moths to live.
I went to another institution and got trated with Cyberknife. I just got a PET 6 months out from treatment that showed I was CLEAR of cancer.
Was the information about the pulmanary node the trigger for your doctor to give you such grim news? Where is the Pulmanary node?
Are you willing to look at other treatment options?
Let us know. There are many here who have been told what you just heard and the doctors were wrong. Please forward more information regarding why your doctor feels this new information makes you terminal.
I say its not over till its over and it looks to me like you have time to find out if you have other options that will save your life.
I was told by three of the top cencer centers in the US that I was terminal. I am not terminal now as I found a fourth that could treat me to the point of a clear PET scan.
Waldeau,
Not sure where you are being treated but regardless I would RUN to a comprehensive cancer center to get another opinion. Many people are Dx'ed with lung cancer and not all die. Why is he so sure this is a death sentance? Do not give up or give in just because one doc expresses his opinion. That's just my opinion.
I agree with all of the above, and get a 2nd opinion. What does your MO say, and want to do? Don't ever give up. I also heard of H&N cancer patients with lung metasteses that were treated, and tumors were stabilized. All the best, and good luck.
Thanks to you all. I'm reminded of a great line in Shakespeare's Much Ado About Nothing - Leonato says to a friar who has offered him a seeming long shot at solving his problem [Being that I flow in grief, The smallest twine may lead me). I had a long talk with the MO and both she and the RO say go through with the tree big bags of cisplatin and the 35 radiation and see what happens. They say, having never been treated before who knows what the response of my particular tumors might be. They say that the HPV+ status is a good sign but that there is little experience with such cancers spread. They say the odds aren't great but what will happen in this first round of treatment will actually be critical to understanding the next steps. I guess I'll go along. First bag of cisplatin was yesterday and although not nausea free - not bad. After this first bash is over I will definitely be looking to get other opinions and open to new approaches. I'm being treated at the Wilmot Cancer Center in the University of Rochester's Strong Memorial hospital.
Waldeau, pretty much everything is a guess in terms of prognosis here. Don't think too hard about about what you don't know the answer to, it will drive you nuts.
Good luck with your treatments and keep us posted.
What do you mean you will wait until "after this first bash is over"? If it were me I would want a 2nd opinion on that lung node ASAP!!!!!
I had mets to my lung RUL diagnosed in 2008. My initial SCC was right tonsil with neck lymph node involvement in 2005. I bought time (and one lung tumor went away!) with chemo clinical trials for the mets, and was referred to an acute care pulmonologist and RO team in July 2012. The remaining right hilar lymph node tumor in my lung has been decimated, per my November PET scan, with a combo of laser for debulking, as the tumor had caused complete collapse of the RUL; cryoablation with argon gas; brachytherapy; cyberknife. I am 65. The treatments were manageable with the primary side effect being fatigue. Waldeau, I tell you my story in the hope that it will give you hope. To learn that you have still another cancer to contend with, as you go through some harsh treatment for your oropharyngeal cancer, has got to be devastating. I wish for you tolerable side effects with your current treatment as you plan for the future.
Waldeau,
I was from Western New York (Lockport)now in FL. Go to Roswell Cancer Center in Buffalo, NY. Make an appointment, take all your records,disks and go. Seeing your in Rochester, NY Buffalo isn't that far. Don't give up and for heavens-sakes don't let them tell you we'll try this and see what happens. If that was said to me I'd run.
Make that appointment!!!!
Best Wishes,
Connie
I think what Waldeau is confronted with is the fact that they are currently in treatment. How can they stop the IMRT treatments to run off for a second opinion? I assume she wants to get through the IMRT before seeking out the other options.
Thats a tough call. I would definitly start looking for folks with some sort of exertise in this particular mets to the lungs problem. I would get as many referals as I could and start thinking about who I would go and see. Some might be able to give some guidence just from the information you can send them, so I would ask my current medical folks to put together a disc that you can send out with all your reports and film on it. I would start with that ASAP.
At some point you will have to get to another facility to have them make a more definative call. I would not let your current folks make that call as they do not seem to know what to do.
I would sart getting discs out to as many folks as I could as soon as I could. At least you will start to get an idea of who can help and who can't
Kelley, Thanks!!! I will follow up with this!
To all of you - thanks for your wise words. You folks have helped me turn a corner here. I am indeed going to get proactive and get supplemental opinions I also no longer am feeling like it's be the right thing for me to do to simply look for the closest, cheapest exit. You've been a big part in changing my outlook. Please accept my most sincere thanks.
You can down to NYC for a consultation if you like, being you are upstate NY. There are are some of the best ccc hospitals, doctors for Head & Neck Oncology, Surgery here....Memorial Sloan Kettering, Mount Sinai, Columbian Presybeterian, Beth Israel, New York University.... For treatment, you can stay at American Cancer Society's Hope Lodge on West 32nd street, and it's free, or do thier tretmrnt protocol locally, except surgery.
Take care