I posted about a month and a half ago about my probable cancer but the path report was not totally conclusive and they could not stage it. I have had RRP for about 6 years (Recurrent Respiratory Papillomatosis) The last path report confirmed SCCA of the larynx stage T2N0M0. I saw the cancer surgeon yesterday and have talked with radiologist.He laid out basically 3 choices for me;
1 treatment with radiation with potential risks and no guarantee it will work
2 partial laryngectomy with still some voice potential
3.total larynx removal with pretty much NO cancer and no recurrent polyps coming back
I sell equipment for a living and my voice has been so bad from scarring and webbing that my sales have suffered as well as income. I am 63 and took a terrible beating financially the last 3 years and finally closed my company.My voice helps me (or did) sell equipment. I was hoping to regain some voice quality again.A total larynx removal would change the picture dramatically.
I need to make a decision pretty quick on what course to take, and I know with NO guarantees.
I will have another CT scan tomorrow (last one 2/1/2011) to make sure the cancer is still confined to the larynx. My last surgery 3/16/2011 confirmed the SCCA.I am flooded with information and the more I know the less I am sure what path to take. I have always been pretty good following my gut instinct but honestly I don't seem to be able to tap that inner source currently Thanks Steve Hurlock

Hi,

From the choice you have given, what are the chances of removing the cancer if it is partial laryngectomy? If it is total larynx removal, will you consider doing other type of work? I have just been diagnosis with T1N0 tongue cancer and understand how important it is in taking each step.

joucads.I am considering bankruptcy and trying to sell some assets. Some rental property I have I owe probably more than they are worth in this market. At 63 it will be pretty hard to make a living doing something else. I can still sell equipment but more limited. My daughter, my ex-employee will help me and I think if I can meet customers one on one I can still sell. The phone voice I have is a disaster for me and it is frustrating for no only me but the customer.I know there is a lesson to learn in this....I just don't know what yet. It was only a few years ago that I could almost buy anything I wanted within reason.Now I am having a hard time trying to pay my home loan and am currently behind one month.Somehow,allthough important,money seems less important then trying to save my life. Steve Hurlock

Steve,
If you have a total, do they think you will be eligible for a TEP? My voice is fairly good, although not as good on the phone as in person. If you would like to talk to me, email me your number and good time to call and we can chat.

I was told if they did a partial, it makes your voice very breathy and I probably couldn't eat. Would need peg for life but that was because of the location of my tunmor. My surgeon wouldn't even consider a partial for me.

There is always esophageal speech which is difficult to learn. Have you ever been to a meeting of laryngectomees? Most speak just fine and many you can't tell they ever had surgery.

What is your doctor telling you about your ability to speak after the surgery? How many of these surgeries has he done? Are you are at a CCC? Why do they feel the radiation might not work? I know time is of the essence, but I think I would like a second opinion, especially if you are not at a CCC.

Take care,
Eileen

Eileen,thanks for support and info.I have not been to a meeting of Laryngectomees.I watched some of the UTUBE patients with the options. The Dr is the head cancer surgeon University of Colorado Denver.Well respected and has a high cure rate.Pretty cut and dry. He said his job is to save my life,the speech department will work with me afterwards for voice if I decide on a total.The total would almost surely remove all the cancer and the recurrent paps.I see a dr. friday at Rocky Mountain Cancer center,whom I saw before for a consult. His comments were "if they want to take your larynx out I couldn't leave skid marks fast enough".
Two total different approaches.It is a little more complicated because of HPV. I was told in 08 HPV positive high risk.The last path report in January said HPV negative.
I am waiting for the FIRM path report on HPV typing.I do not have it yet. Certain HPV types respond differently to radiation.The paps have been a real issue with surgery every 2 months and continued scarring and webbing.The vocal cords have some movement but the web prevents any real sound but breathy. Eileen,I will call you. Thanks Steve Hurlock

To my knowledge, they usually try to save the larynx if at all possible. I had already had radiation 4 years earlier, so I wasn't a candidate for rads. Rads is what would have been recommended for me.

You still haven't answered my question as to whether you are a candiate for a TEP. Did he mention it? Did they check your esophagus to see how well it vibrates?

I'm not familiar with paps and didn't have that complication. Glad you are getting a second opinion.

Take care,
Eileen

There is a new type of treatment called Trans-oral Laser Resection Treatment. It is the same as radiation but its non invasive. It is useful for small lesion so not sure if it is suitable to you. Do google the term and see if it is useful to you.

That reminds me Steve. Originally they were going to try and remove my TINY tumor with laser surgery. When they put me under anethesia, they realized that it was too close to the esophageal opening to get clear margins so I had no alternative but total laryngectomy. I had my surgery at U of Penn. At that time, there were only two doctors in the country that did this laser surgery. I have no idea whether that is the Trans-oral laser surgery she is taking about. But it might be something else to ask about.

Take care,
Eileen

Get a second opinion from a speech pathologist with OC experience (at a CCC if at all possible). Considering your your career. I know that UCSF has a guy who specializes in this and he sees many major vocalists to save the voice box. There's probably only a handful of these specialists in the entire US. Brian may be able to help you find one - send him a pm.

I wouldn't exactly call laser surgery "non-invasive" it does ablate/destroy tissue and that IS invasive, but not as much as surgery or an ND for sure.

Ionizing radiation in invasive.

"Trans" (L.) is medically defined as "Prefix, meaning across, over, beyond, through"

Hi,

While you are searching for the right doctor and the best option for your illness, also try to take note of your diet and exercise if possible. Build up your immune system so that your body is strong to fight the cancer cell.



For me, I am definitely including more broccoli and tomatoes, carrot and garlic into my diet. Esp. broccoli.

Take care.

This is great advice pre treatment treatment or post treatment, (the foods) especially if you are having surgery. However a lot of the foods are antioxidant based. And if your are in radiation therapy they warn about not taking and eating high levels of anitoxidents. The radiation actually uses free radicals to damage the cancer cells - so if you kill them it will work against the rads. Healthy cells can handle too many free radicals but apparently cancer cells can't... But I will definitely use this food list post treatment.

Thanks at @joucads

Beware of the above links!!!!!

Cancure.org is listed as the Cancer Cure Foundation which is on the Quackwatch list. Its best to avoid places like this.

Always clear any supplements or special diets with your doctor before trying it. Your doctor knows you best and has your full medical history right in front of them when they make their recommendations.

Thanks guys for all the input and help. I think it was Christine that almost 2 months ago had Maura Gillison recommend Dr Raben at University of Colorado Hospital. He is a Rad/Onc that specializes in Head and Neck cancer and is familiar with papilloma and HPV. That does complicate my situation somewhat. It was hard trying to find someone that understood pap virus with HPV. I will get my dental work done early next week and start my radiation treatment. I won't do anything about my scarring and web in my larynx until I fight the cancer and beat it. I need to start treatment NOW as long is SCCA is confined in the larynx. Thanks for all the help and this information is great. It help me learn, ask intelligent questions and explore options I would not have had the knowledge to do. I will begin posting on treatment section when I start. Steve Hurlock

Steve, it was Brian Hill who helped you with Maura Gillison. Best of luck with your upcoming treatments!

Hi,

@ChristineB: Thanks for pointing out that Cancure.org is on the Quackwatch list. Was wondering where can I get the full Quackwatch list?

@Cheryld: Thanks for sharing info about diet during rad treatment. Was trying to build up P53protein in my body.

Joucads

I'm glad you posted again before I launched into my usual tirade about bogus cancer sites like cancure. If you can still edit it, please delete the URL you gave. I intend to hit notify and ask the administrators to delete them anyway so other posters are not mislead.
Here is the full the Quackwatch list Special message to Cancer patients Quacks
so you won't be fooled again. If you scroll down you will see cancur on their goofball list.
What is especially insidious about sites like this are the way they take common sense (eating vegetables is good for your health and immune system) and conflate it with quackery (it will protect your from cancer or "cure" it)
Here is another good web site, a bit preachy but excellent in debunking cancer crap Science based cancer medicine
It's so refreshing to find a poster who is grateful for us pointing out misleading, inaccurate and predatory web sites instead of getting all defensive or angry about shining the light of truth upon their delusional hopes of curing cancer without radiation, chemo or surgery. Thank you
Charm

Hi,

@Charm2017: Thanks for the list. Appreciate it. Just begin my journey with the big C word, trying to navigate the mountain of information on the internet.

@davidcpa: Thanks for deleting the links. I really dun want to mislead anyone.

@steve: hope the best for your treatment.