Starlike

Hello Starlike! We do not have a Y here. But I am familiar with the program. Just before I was diagnosed I spoke with someone from the organization about running these classes at our senior center where I work. Had I not gotten sick, I would have pushed for it. The instructor is paid through a grant but the facility does not gain anything. What a wonderful way to safely ease back into life. Keep in touch. I would love to hear what you think.

Jane

I am sorry for jumping into the middle of this conversation. I have been out of the country and email-less for a couple of months. Starlike, I, too, had pretty much the same experience as you are having. Started out with a sore throat (less the lump), and progressed downhill from there. After the diagnosis (SCC base of tongue, stage IVa) and a biopsy to confirm, my team decided that concurrent chemo (Erbitux) and radiation was the appropriate course of treatment. Prior to, I had to have four molars (two on each side)removed from my lower jaw, wait ten days, then get fitted for the "mask", PEG tube and pressure port installed. BTW, the "mask" is the most inhumane form of torture imaginable, IMO. I was never claustrophobic until they fitted me, and the claustrophobia worsen with each of the thirty-five sessions of radiation. The techs had to literally "pour" me onto the table, and "peel" me off it. The chemo had little aftereffects on me, other than some lingering "chemo-brain" that seems to be worsening as I age (68). Radiation, well, that is another kettle of fish. I ended up with second-degree burns outside and inside my throat. After all that healed (I no longer have to shave my neck below my jawline), bone fragments from the molar extractions began surfacing from my gums. That necessitated oral surgery to remove the fragments and to plane the jawbone for the fitment of partial dentures. But . . . prior to the oral surgery, I had to go through thirty-five "dives" at the Virginia Mason Hyperbaric Oxygen (HBO) center here in Seattle. The HBO treatments were to inhibit the probable onset of radiation-caused osteonecrosis after my oral surgery. Then, ten more "dives" after the surgery. PEG and port were removed after ~ six months and I have regained twenty of the forty-five pounds I had lost. I am 21 months out from my last treatment, apparently cancer-free and expect to be so from here on out. I have some issues with radiation-caused scaring inside my throat, but I am adapting well. My oral tissues are "fragile", so I have watch what goes over the lips. Thrush continues to be an occasional problem if I don't. The light at the end of the my tunnel is getting brighter, one day at a time; yours will, too.
Ken

It's a tough road, stay positive and good luck. Prayers are with you. Reach out if you need something.

I have had chemo, radiation, and 2 neck surgeries. If there is any assistance I can give you; please let me know. Stay strong and have a positive attitude. Kevin

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter

Hi There, sorry you had to join this club. I did not join until after all of my treatments were over for SCC stage 4 HPV negative. I am 35 and did not expect such a diagnosis. To say that I was in shock is an understatement.

I read a bit on your wall and wanted to give some advice here. I noticed that you will be asking for a copy of you biopsy report to bring with you for a second opinion. I know when I went to Boston to meet my surgeon, he had a copy of this and was not satisfied with it. He also requested the lab slides from the ENT here in ME as there was information he wanted that was not included in the report. So, just a heads up there. The lab can send them directly to whomever you decide to cover your surgical needs.

I had surgery (which lasted 11 hours), chemo and radiation. The hole kitten caboodle. My surgeon took the time to go over everything from his job to everyone else's. He really prepared me for the worst. I may not of wanted to hear it, but with all sorts of information under my belt, it helped me prepare to meet with the rest of the team and helped me deal with my fear. Information was a powerful tool.

If you do have radiation, I urge you to meet with a dentist prior to treatments. Many people on here have had their teeth pulled prior to radiation. I was able to keep mine. I floss and went to the dentist every six months prior to all of this, so I didn't have issues with decay or gingivitis (spelling?). You want any oral issue addressed prior or there could be problems down the road. I now have to use dental trays with flouride for 10 minutes a day, but I keep my teeth.

Anyway, you have a lot to think about. Right now, take notes and eat. If you need to bring a note taker to your appointments with you, then nominate someone and provide them with a notebook and pen. I found during the early stages of diagnosis for me were the toughest. So many test, so mush waiting and so many questions. You can do this. I know you don't want to, and trust me, I didn't either. Heck, I am 35, I have always eaten right and exersized like a crazy lady, and this is what I was rewarded with! Frustrating.

I really want to wish you the best of luck. If you have any questions, please ask. If you need to rant, please do so! We are here to support you.

Welcome to this club It is not one that we asked to be in but we are going to all get thru this .. I am at the halfway point of my treatments .. 18 of 35 radiations and 2 chemos done .. You will get thru this .. Good Luck ..

Wish I had some advice for you in regards to sleep, but I don't. It was months before I got some decent shut eye.

I was going to meet other surgeons before I decided to make a final decision on who I would let operate on me, but when I met with Bohigian, I knew he was the one. He had so much experience, confidence and compassion I knew this was 'the guy'. My surgery should of been 3-5 hours. It was 11 hours. He removed the tumor from my tongue and did a neck disection on the right side. He did amazing work. I wouldn't call him a surgeon, I would call him an artist really. I just knew, in my gut.

Anyway, hope it is all going well...or at least as well as it can be.

Mine was squamous cell carcinoma of the right tonsil, metastasized to a lymph node - stage III, T1N1. The doctors at the first hospital gave me a radiation and two types of chemo, or you will not live for a year diagnosis. I left and had it cut out at another hospital. I was supposed to be long gone (just over a year since diagnosis) by now and I'm getting ready to break in my new ATV this weekend. The surgery was NASTY, but beats the other stuff. IF IT IS HPV POSITIVE, there is a better chance that it can be removed with surgery only. Doctors at the first place refused to look at the evidence. Doctor at second hospital knew it before I mentioned it. Get a second, or third opinion!

You have alot of concerned friends right here!!

Hello and welcome, we are glad you found us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

https://www.whatnext.com/conditions/cancer/head-neck-throat-cancer

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.

Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

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GregP 3X Survivor
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