Do you often wonder if the doctor is being totally honest with you? My husband has a rare cancer on his vocal cord that was removed and they said the biopsies all came back good. Just as a precautionary measure they wanted to remove the lymph nodes on the right side. Unfortunatily it was delayed due to sickness and the holidays for 4 weeks. What a shock when the doctor tells us casually that there was cancer in 1 lymph node and asks my husband "how far do you want to go with this?" Meaning do you want to do radiation. My husband took it as do you want to try to fight this even though it doesn't look good. I don't know what to think, are they being agressive enough. There was talk about chemo but ended up not being recommended. I almost wish they were doing it along with the radiation, I am so afraid that it will or has spread and the only way they can detect anything is a pet scan down the road and then it might be too late. Also, if it spread to one lymph node after the first surgery, is it possible there is still cancer growing in the vocal cord area? I wish there was some way to check but the only way to detect this cancer is visually and it sure scares me every time my husband mentions pain or odd feelings in his throat. Will we ever not live in fear of finding it has spread? I sure wish there was more info on this particular kind. It is adenosquamous carcinoma and there just is not very much information that sounds promising that I can find since so few cases and few studies published. Orignally the doctor told us 90% survival rate. I asked if this has changed since finding cancer in the lymph node and he said no???? This is something I want to believe but when I read obout the usual cancers of the larynx and see those survival rates and this cancer is known to be very agressive and does not respond well to radiation it scares me unbelieveably!! Just wish I had more confidence in the whole matter. I am usually very optimistic , even with this but don't what to find ourselves living in some kind of dream world.
I'm relatively new to the forums and as yet still waiting on biopsy results, but I know how it is to wait for some sort of reply to help ease your mind or give you a sense of direction, so let me give it a shot.
From what you have said, it really sounds like your husband's doctors are still optimistic about his prognosis. However, if you feel that they aren't telling you everything you need to know, seek out a second opinion. You and your husband MUST be comfortable and as confident as possible in the care you are receiving. For your own piece of mind you need to know you are doing everything you can.
Most people on the boards here recommend getting to a cancer care center ASAP, so if you haven't done so that is a good place to head for that second opinion.
Whatever you decide to do, don't give up and don't let your fear of disappointment destroy your optimism. You will need as much of that as you can get to get you and your husband through this ordeal. Keep a clear head, ask all the questions you need answers to, and if you don't think your doctor is being forthcoming, ask someone else. Your husband's cancer is rare, but he isn't the first to have it. Try to do some research and see if you can find someone who has successfully treated his condition.
I'm sure plenty of more knowledgeable people will chime in here to guide you on your path, so please check back often and let us know how things are going for you. I'm so sorry you are going through this and I wish you the best of luck with everything.
Terrib,
I'm sorry your going through this you are your own best advocate. Get your questions ready for the Doctor and you want answers. One to ask is why didn't he remove the lymph nodes when your husband had surgery? I'd like to know the answer. My surgeon did he said, we'd rather be safe than sorry.
When your husband was asked how far do you want to go with this, that's when you run to a Cancer Center. How the heck do you know how far to go, this is all new to you.
I hope everything works out for you it's time to go to a Cancer Center.
Keep us posted take care,
Connie
The waiting part of any decision is always stressful, but as soon as you can make decisions, you and your husband will feel more in control and can start the fight towards recovery. Meanwhile, you can find out a LOT of info on this site in the search boxes and from the main OCF page (click above where it says "Oral Cancer Foundation"). If you scroll down you will see "Oral Cancer in the News" - a link which gives you all the latest developments. You can search with "Vocal Cord Cancer" or "Vocal Cord Research". I've heard of successful vocal cord laser surgery and robotic surgery for treating. On the main OCF page, in the upper right search box, if you search "Vocal Cord Cancer", you will see "Patient Stories - Carla" which is a very positive account of her experiences. As you go along, make sure you write down any questions that this research makes you think of. When my son was first diagnosed, it took me several days before I could even type in the words "Squamous Cell Cancer". I was so afraid of finding out bad news. But not knowing and imagining the worst is a bummer. I mainly tried to stay with and concentrate on the positive stories and research. My son could not even come here very often because it depressed him so I kind of filtered what I found and making copies for him. I came across this link from Massachusetts General Hospital on successful laser surgery:
http://www.sciencedaily.com/releases/2008/05/080506103722.htmEveryone is different of course and that's why a cancer team is so important in helping to select the best treatment for a particular patient. Please come back here often and let us know what is happening.
If you and your husband feel uncomfortable with the current doctors then find some where you will feel comfortable. A second opinion with top notch doctors is the way to go. Not all oral surgeons or ENTs treat mainly oral cancer patients. A cancer center is the best place to be treated as it will be a team approach with experienced specialists who see hundreds of oral cancer patients yearly. Since you are concerned due to your husband having a very rare form of cancer then seek out the countries top specialists. They will have the best knowledge of how to treat him.
Best wishes!
Hi, Terrib
I agree with getting a second opinion as you do not seem confident in your doctor at this point. Could you go to the Mayo clinic for it, maybe?
There are some cancers (such as my husband's) where there is not a huge difference in survival whether or not the lymph nodes are impacted - the important factor is that they are treated. He also had a delay due to the holidays - drove me nuts while it was going on, but he has had a good outcome thus far.
Best wishes and keep us posted!
Hi there a second opinion is always prudent... I agree I think I would run if the dr. Asked me how far I wanted to go. My cancer was well differentiated- moderately - I still wanted them to be agressive with it. I made it very clear right out if the gate I wanted them to do everything possible it wouldn't advance. I started off with a tumor, and found it in one node between the time of biopsy to surgery (6-8 weeks..) though I would place it at less because I personally palpated it 2 weeks after the biopsy despite a clear CT - all it takes is 1 cell... I prescribe to the boss theory - you a main tumor - its in charge. You may get smaller ones that spread, but rarely do they get larger than e primar, once it's removed, (e boss is out of the picture- they are free to play... Hence a node popping up. There were probably cells there to begin with... The surgery etc... Changed the game and affected his immune system gave the cells a chance to grow. Not everyone subscribes to this theory.. But a few do. I personally believe that a neck dissection should have been done with the initial surgery if they suspected spread or if they were planning to do it anyway... Why go rough surgery twice. Do get snore opinion. Ps drs will only tell you what you want to know. Be your own advocate ask!
Take care and good luck!
Sounds like you need to get to a Cancer Center ASAP and get a second opinion by a Cancer Team, I would not wait, this fight is hard enough with a proven Cancer Team who are with you all the way thru this. Dont wait and be as aggressive as possible with the Treatment!! Semper-Fi Bob
Thanks for all the info. I wish we could get to a cancer center, I called and once they found out what insurance we have, Medica thru Minnesota Care they were done talking and wished us the best!! Since this cancer is so rare both Mayo Clinic and Cancer Centers of America have no records of treating this kind. I have emailed a doctor in Italy who treated a case but never heard back. I did call Mayo clinic last week and a doctor called back within 2 hours and did confirm the plan for radiation and emphasized the need to start right away. I don't dare prolong radiation for him. I just wish they knew how beneficial it is going to be or are they just following standard protocol for treating other similiar cancers. The side effects that will be long term really frighen me.
The Mayo Clinic doctor's confirmation of the plan for radiation as soon as possible sounds like good news to me. When my son was diagnosed, (University of TN Med Ctr, Knoxville, TN) the hospital he was treated at was not on the NCI list of cancer centers, but they did have a cancer team that all got together with us to come up with the best plan. The ENT was a Maxillofacial surgeon and was known to be very aggressive in his treatment which included surgery to remove lymph nodes and radiation. Whenever the team got together, in addition to the doctors, it included my son, me, my daughter and a nurse friend of mine so that we got all our questions answered. You mentioned "side effects" - if you mean side effects from radiation, this varies with the individual - some survivors just sail right through with very little effects while others have a much more difficult time. My son did have a difficult time with the radiation, but he's been cancer free now for over 5 years and doing just great! If it's not possible to get to a cancer center, perhaps there is a hospital that would have a cancer team and an ENT with oral cancer experience?
My advice - I would do the surgery (neck dissection...) 3-4 weeks to heal then radiation and chemo. I did a bit of reading and they say adeno squamous carcinoma should be treated as a high grade scc - my reasoning for suggesting the surgery is two fold... First off its hard to operate on radiated skin (in case the node doesn't die off) -. Secondly HPV related cancers respond well to rads and chemo - therefore may not require surgery depending on size, location etc..., however this is non HPv related and thus usually the treatment for standard scc is surgery (often including a neck dissection ) then radiation/chemo for any possible clean up. Plus if they remove what the "know to be cancer" then rads is just sweeping up the remnants. Definitely get a solid second opinion. The mayo clinic sounds good, but have they met your husband examined him, his films and read his file? Regardless good luck with everything.