Are they caused by HPV?

Ok guys I really need some TLC on this. It took over a week for the path report to come back,I got news this morning it is a rare form of cancer Spindle Cell Carcenoma I see the ENT Tuesday to talk about options. I had 32 TOMO rad last year so I am probably not a candidate for more Rad.
I turn 65 next month and if I were in my 40's there would be no doubt I would fight this.
I am so close to giving up it scares me. I sell equipment for a living and I am just now recovering somewhat financially from the mega loss of last 4 years.
You have all inspired me but I have never talked to anyone that has lost his or her Larynx. Will I ever be able to talk on the phone?
If I were not in sales the decision would not be so traumatic.
How will potential customers be willing to deal with me if at all.
The doctors are so black and white. To them it is a no decision.
When does quality of life ongoing simply outweigh the individual price one must pay to go on?
I need to talk to someone that has been somewhat in my situation.
I watch You Tube videos and I am more confused then before.
Friends are giving me information on new treatments that they have heard about.
One friend told me to explore Supracrcoid Larymectomy.
Another friend told me to explore burzynski in Texas that has great success with a new cancer treatment that attacks the cancer cells.
I need to take a couple of days to process most of this.
One thing I know is I do not have alot of time to sit on the fence
I know many of you have been here and you are my only support group
that understands where I am in this point of my journey.
I promise, I will not give-up the fight until I explore all options.
This may not even be the right forum to air my feelings.
Thanks Steve Hurlock

Steve, I understand your dilemma very well. Back in 2009 I faced something similar when my cancer came back for the 3rd time in 3 years. My decision to go thru with the surgery came after listening to several members of this forum. I was very close to not doing anything which would have had me die a horribly painful death. I had been feeling great, went on a 25 mile bike ride with my son and was walking around with Stage IV SCC in my jaw. I hesitated to get my jaw removed thinking if I would die anyway it would be easier on my children to live what time I had left with them since I was doing pretty good at that time. I was thinking of them and wanted to spare their feelings. But because of the good people here, they told me I need to try before I just give up. I hadnt considered it as giving up, I thought of it as the easier route. Even with the complications I went thru, I survived. I may not look so good anymore but I am here which is the most important thing. There are worse things in life than having disabilities including being disfigured or unable to speak. Please dont your fear of living with a handicap choose your fate. Also never give up without trying!!!

Regarding your friends and their miracle cures, they are trying to be helpful. Most people do not understand how oral cancer works. Its different from other cancers with the terrible side effects and other complications that go along with it. When people see others being cured with unusual medical treatments they think those things are possible for everyone. Problem is, everyone is different and has their own set of issues which could rule them out as a candidate for these procedures. Especially the new treatments. This might not be for oral cancer at all. I urge you to use extreme caution when even considering anything that could be alternative. You dont want to attempt something like this and get so far only to find out you are out of time for a conventional treatment to be successful. Best advice is to get to a major NCI cancer center where they are familiar with oral cancer.

Best wishes with your decision!

Hi, Steve,

There is a Doctor on this site who is a laryngectomee and he continues to lecture at medical centers and medical schools. If you put in "dribrook" in the search box, you can read some of his posts and even contact him through Private Message. He is very inspirational and may be a source of support for you.

Please investigate all possibilities for your care and make sure there is science to back up what you choose to do. No one was ever cured by alternative methods. If those methods were so successful, every arm of medicine would be promoting and recommending them to everyone. The cancer research community shares info, cures, and breakthroughs throughout the world.

I wish you well in your treatment no matter which course you choose. You have a tough road ahead but you have a lot of people here who will cheer you on. Take care.

Anita

Please don't give up - there are others here who been dealt the same Hand - they'll be along I'm sure... I know sometimes you just want to pack it in... But please don't, see what your options are... And do get a quick second opinion, - hugs! my thoughts and prayers are with you.

Steve, I know that this is terrifying for you. The thought of living without a voice!
Kris had his larynx removed in March. At the moment he uses an IPad to communicate, and it is laboriously slow. However, in another 3 months when the tissues have all healed post the surgery ( and earlier radiation ) he will have a TEP one way speaking valve inserted . This will provide a passage between the trachea windpipe and his oesophagus. This then enables speech to occur, with a lot of help from the speech therapist.
I imagine that for you speech , clear speech , will be very attainable. You still have your tongue so you should get clear, very understandable speech. Many , many laryngectomees live full lives and enjoy all facets of life. If they are working they continue to work. Why on earth not? Other people will adjust to your new way of talking, as will you. Yes, you will be able to hold phone conversations.
Kris is still recovering but he has a good life which will only get better. Yes, it is isolating to begin with, but there is an endpoint and goal in sight. Certainly our 3 sons and myself would much prefer to have him this way than not at all.
You have not been given your treatment options yet so really you have no decision to make as yet. Grab life. It is precious. Don't let a small handicap of speaking differently deter you.
Hang in there,
Tammy

Hi, Steve
one of the women I ride with is co-pastor of a local church with her husband. He was diagnosed with spindle cell cancer many years ago with a poor prognosis. The doctors operated; the pastors prayed. Remission for many years. Then, a recurrence. Once again, the doctors operated, and the pastors prayed. Last week I saw them both - the lady tacking up her horse, and the survivor caring for his boisterous young grandson. We never know what tomorrow will bring, but as many have said on this thread, life can have great beauty and meaning even if it is very hard sometimes. My thoughts are with on this difficult journey.
Maria

saw the surgeon today at University of Co hospital.The spindle cell tumor has blocked about 65% of my airway. I am having a little trouble breathing particularly since I live at 9.000 feet elevation. They want to do surgery Thursday(this week) and I am not at all prepared to do this in two days. I need to prepare myself and do some things before I potentially loose my larynx. I am going to meet the surgeon tomorrow and try to ask him to remove the tumor and leave my larynx at least for a couple of weeks. The cancer is confined to the larynx and has not invaded any lymph nodes. The doctor said rather matter of factually "cancer has no time table".
I know this butI I have to put some issues behind me before I loose my voice box.
It is so hard to plan for this emotionally and physically.Keep you posted Thanks Steve Hurlock

Steve, I do understand this for you. I know how difficult it is. Really, you need to get this done ASAP. I don't see how your surgeon can remove the tumour but save the larynx. Your life is worth it.
Thinking of you.
And it will be a good life.
Tammy

Let me second that - surgery first I would be scared crapless but overjoyed at the speed he wants to get this done... He's looking out for your best interest. He's right as well time is very important I understand the need to get things sorted out but this is more important. I know the ability to speak is not something we give up lightly - but the sooner it's done the sooner you will get into recovery mode and hopefully get all that you can back. Hugs.