It's been exactly a year since I had 32 treatments TOMO radiation to kill cancer of the Larynx. I was doing great and voice came back about 60% of what it was which was certainly acceptable.The last month I was getting hoarse and kinda new the polyp was returning,We did a dive trip to Fiji mid May and I was thinking this could be my last dive ever.
My ENT during my 6 month check-up said if the polyp came back it would probably be cancer.
Well, its back.
I am preparing myself for the worse.Is it possible to radiate the same area? I did not have any chemo the first time.
Because of 16 surgeries to remove previous polyps my vocal cord has severe scarring and webbing.
I'm scared and hope this is not the event that takes my Vocal cord for good.
Thanks for all your input and help during my past rad treatment

Im so sorry you have joined the recurrence club!!! It takes a while to get used to idea of dealing with the whole mess again. Once you get a treatment plan in place you will know whats going on and how invasive it will be. You have been thru alot! You now know all the jargon and hopefully have a top notch medical team in your corner. Those things will help you get thru this. Yes, some have had rads more than once, it can be done.

Good luck!!!

Hello. I'm not sure from your post if you have seen your ENT since returning from Fiji. Have you had a biopsy? Have you had a CT/MRI ? Or are you just preempting it all?
A reoccurrence is very scary, but if this is the case you will get through it.
Don't jump to conclusions. Wait until you have a definitive diagnosis and treatment plan if one is needed.
Should you need a laryngectomy, you will survive that too. We went through this surgery in March and should you have to go down that path we will be here for you.
Tammy

Fingers crossed its not cancer!!!

Thanks for all your support. Surgery the 13th CT scan Monday the 11th. You are right I should not put the cart before the horse but based on conversation with ENT and history I am preparing for the tests and biopsy to be not good news.
This polyp seems to be growing fast and I can feel the obstruction in my throat.
Based on the scarring and webbing of my vocal cord I really work harder than normal to talk.Keep you posted on results. Steve Hurlock

How's it going Steve?

Hi Steve, I'm thinking of you, and hoping you're going OK. Linda

I get biopsy results Monday the 18th. Had surgery last Wed to remove the new polyp growth. I had a CT scan last Monday. It shows Lymph nodes so far clean.ENT said the polyp was exact same place as one in 2011 that was cancer. I am sure that means certainly no more radiation in that area if the news is not good. I will keep you updated...and thank you all for guidance and prayers. Steve

I will pray for you and add your name to a prayer line.

Thanks for the update.

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.

Hi Steve,
I guess I look at it this way...if you don't do it you won't be able to breathe soon much less speak. If you do it you know there is a CHANCE you will be able to speak again eventually, and breathing will continue. It is wonderful that you have a doc that wants to get right on it.
That being said, we have had the discussion several times that if a recurrence happens in our house and Kevin has to have the big surgery and never eat or drink again like Charm talks about, he might not do it. It is a personal decision and we are here for you no matter what you decide. There are folks like Charm Christine and Eric that are pounding the pavement and are truly our heros, but Kevin just doesn't know if he could be them. I have to accept that it's him living it, not me. Although you know I would be living every moment right by his side.
I don't know...keep us posted!!
Kathy

I was fortunate to have had my doc let me choose the date for my mandibulectomy. He told me it must be within the next 2 months or the cancer may not be able to be cured. I selected a date almost 2 months later to give myself time to prepare. Boy did I live it up during those 2 months. I also prepared to die and made all the necessary arrangements for my children in case that happened. It was the longest 2 months of my life. I will never forget being at the hospital at 5am with my son waiting for the surgery. I was laying there joking, I even had photos taken after the doctors signed my face and neck. I made sure if I didnt come out of it he would always remember it was what I wanted to do to try to survive. I never wanted my children to ever feel any remorse for my choice of having the surgery. It was one of the hardest things Ive ever had to do staying cheerful and optimistic in front of my son while I was scared to death that I wasnt going to ever see my son again. The 2 months also gave me way too much time to worry which wasnt a good thing.

If you choose the surgery today, I wish you all the very best with everything!!!! I will wait to see your posts. Thinking of you today!

Christine and all, thank you for your thoughts and prayers. I have surgery at 2 this afternoon. Seems this tumor is growing rather quick. I have maybe 25% airway left and the plan is to try to remove most of the tumor today. I have a very short neck and the tumor is tough to get to. The doctor will try a supracricoid larygectomy which may give me some voice. I've watched the visual on You Tube and seen the results from a man speaking.Knowing what I have is reality,not knowing the future and the results are in Gods hands and the surgeon. I fell blessed to have found this site and all the positive energy provided by everyone.Am I scarred to death,yes....
Am I ready to move forward and try to beat this.....yes. Steve Hurlock

You will get through it... god bless and saying a prayer for you.

Yay Steve. I know you won't see this for awhile...but great decision. Hope all goes well and you kick this thing in the butt.
Kathy

Hi, Steve.

I'm just reading all of the posts on this thread. I hope you are resting comfortably as I type this. I think you made the right decision to fight. There are many people here rooting for you. Your life will be worth living!

My father lost his vision completely, due to diabetes. I was very young when this all happened, but I do remember times when my father had sight. He was completely blind by the time he was in his mid-to-late 30s. I can only try to imagine how incredibly hard it was for him and the rest of the family. He was a skilled printer by trade and loved cars and working with his hands. He lived a fulfilling life for many years after he lost his sight. It wasn't easy, but he enjoyed his family and friends. He had to leave his career as a printer, but he was able to work. It wasn't what he was doing for work that mattered, but he got out of the house and socialized with people and made friends.

I am confident that you will find your own way. I wish and hope that you can look forward to a cure and go on living with your new normal. Best wishes for a full and speedy recovery. Please keep us posted as you are able.

With great care,
Kerri

Good luck, Steve! Thinking of you and sending positive healing thoughts. We'll all be here waiting for you...

Well its done. I went to the hospital the 27th to have the polyp removed and come back in a coup;e of weeks to get the supracricoid larymectomy. The surgery was later at 3 in the afternoon and my wife and kids and grandkids were there. I asked my family if they thought I should go ahead with the major surgery now since I know worrying the next two weeks would have put me in the same spot anyway. The Doctor finally came in at 4. We discussed all the options and I asked him if he would be able to do the 4 hour operation so late in the day. He said he was ready if I was. WE did the operation on the 27th. I just got out of the hospital friday the 6th of July.I have the trac in currently This is a tough operation and really has wiped me out.
I live at 9,000 feet and so I have O2 equipment home with vaporizer. The reasons I love the mountains has unfortunately now become a curse. My resting pulse ox at this elevation is in the mid 80s with out the supplemental equipment. I can get to 93 with the oxygen. I have 4 levels so I have tanks and equipment on every level..I failed the first swallow test at the hospital so I go in Mon for a check up and see a swallow therapist.Currently Im tube feeding through the nose to stomach. Hopefully this won't be in very long.
This is quite a journey and i don't think i could have made it without all the support from everyone here. I'll stay posted Steve Hurlock

Keep us posted.

Hi, Steve.

I'm sorry this has been such a tough journey for you. There are a lot of hurdles that you have to jump, but it seems like you have an excellent support system.

I wish for you a speedy recovery and that you are able to get those O2 sats up so that you start to feel better. Besides the major surgery, low oxygen saturation will make you exhausted on its own.

Take good care,
Kerri

Me too hope you recover quickly and remember give yourself time to heal. Hugs and blessings!!!

So glad you updated. Keep up the good work. Remember you have all of us backing you!!
Kathy

I'm also in the fight against larynx cancer my friend. Sept. 1st will be 1 year since treatment. I have a scope with my ENT on the 18th so I have some trepidation. I had the same number and kind of rads that you did except my ENT decided to be very aggressive and I had chemo as well. I hope it made a difference.

My heart goes out to you regarding your voice. It has been one of my major concerns as well. Before cancer I was an award winning singer, having a 5 octave range. Then I started to lose it slowly over time, in a way that was insidiously ignorable until all I had left was a gravely speaking voice. Unfortunately being the kind of person I am, as I lost ability to do one thing, I seamlessly transferred my focus into a different talent. Because I sounded like Wolfman Jack, I got into talk radio. So when you mention your career being voice dependent I know exactly how you feel. It's a really big deal for us. Really big.

But I want to also share with you my realization that I am awesome enough to do other things and that my identity doesn't resolve around my voice. So if I have to lose my voice, I will do it and refuse to be afraid because I am more than a stream of sound and everything else about me is worth fighting for.

So I hope that you fight and know that I am fighting with you. Right here, right beside you. Shield up, sword in hand. And by the grace of God and the will to live, we will carry on and do great things.

Hank thanks for the uplift...looking into voice amplification units now that may help me. I need to find something that works with cell phone if possible. Thanks Steve Hurlock

That was truly an amazing post Hank!!! I love the support we have here.I'm so happy to be part of the OCF family.
Kathy

Hank - you are truly awesome! I loved your post, especially this part:
<<I am awesome enough to do other things and that my identity doesn't resolve around my voice. So if I have to lose my voice, I will do it and refuse to be afraid because I am more than a stream of sound and everything else about me is worth fighting for. >>
We have so many awesome and beautiful people here who are way more than what OC has done to them and who have given so much of themselves to help others.

Steve - Re the voice amplification unit - I wonder if the new app being worked on by OCF for iPhone (and later Android) could be a part of this voice amplification? Let us know what you find out.