hms03049

Hi, I didn't mean to be insensitive and abandon you. This site needs a list of our followers, so we can find them. We forget names-after all we have cancer brains. Often people post a new question update- and it is just not in questions. I'm so glad that you went to Boston, and that you're doing OK. I try to follow friends, and follow up. Sometimes I think that pestering them. I'm glad that this part is over for you, and I hope that it's enough. Have you ever thought about signing up for MedPageToday.com or KEV MD. You can sign up they have varieties of things that I find interesting. They've had lots of articles about prostrate cancer lately and different oncologists put in their 2 cents worth, along with nurses, patients-etc. It's helped me a lot to understand different cancers and problems-on a very superficial level

Hi, again I didn't mean to insult anybody. It's just that using data for head/throat doesn't apply to the radiation done for many other cancers. It's so completely different, and sort of flying by the seat of the pants. ASCO, NIH, the oncology radiation association know what dosage to give, how long the treatment should last, what angles to have the beams set, because so many patients have these type of cancers, but they don't know for many of the head/throat cancers. Mine is a rare, aggressive incurable. The only thing they agree on is that it's in the worst possible place.
My radialogist said that my lip might be like a burnt sausage link. He made me a special mouth guard that wouldn't push my lip out. He said that I'd probably have to breathe through my mouth, as my nose would burn shut. The edges of my nostrils and my nose would burn. I can breathe with my mouth shut-and I don't make any odd sounds. For some reason the nose and lip came through just fine. I can taste my food, and smell. My radiologist had to increase the dosage and time. he broke all of the rules.

The alternatives were to go into palliative care or to have my nose, eye, and cheek cut out- bone and all in a process that takes about a year in a nursing home, lying their, with my brain exposed. I met a man that did it. They say that will give us about 10 years before it comes back. I met a man where it came back in 2 years-and a year of that was in the nursing home.

Some doctors thought that I was nuts, because I said that I didn't want to look like half human-half Borg, and I don't want to scare small children. I'm in remission, doing wood work.

Hello and welcome, we are happy to have you with 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/prostate-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
WhatNext Community Mgr.

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