Newly diagnosed

Hi Bulldogger,

Sorry that you had to look up the word "cancer" but happy that you found "us" here while doing that. As many have said, it's not an easy thing to digest. This is very doable and you will look back at this as a small memory.

I'm a caregiver to a loved one....male, age 53, diagnosed Aug 2012, finishing tx Nov 2012. He was dx with Stage IV SCC of BOT (Base of Tongue), with 2 lymph nodes involved, HPV 16 +, non-smoker, mild drinker. Treatment consisted of 7 weeks of chemo, Carboplatin & Paclitaxel (once a wk) & rads (5 days wk). He did get a second opinion and decided on a teaching hospital (U of M), which met with a tumor board.

First, as others have said, stay off the internet. This is mostly outdated information and very difficult to understand for most. Come here and you will seek valuable information along with what you get from your doctors. Be sure to check out the Superthread at the top of the discussion board for additional questions you may have.

Treatment is no picnic, but it is certainly doable. You can do this! There are many here that have been around for many years that still find the time to check in and give advice. You will also find some that have been out for a few years or just a few months, or even starting treatment just as yourself, either way, there are plenty of people here to help.

We are near our 2 yr (from ending tx) check up this November and look back at this as a vivid memory. He is currently doing well mentally and physically. He rides his motorcycle, golfs, works full time and is enjoying life!

Come here when you have the questions, or just need to talk or vent.

God Bless,

 ~C

Bulldogger1 said:

treatment

We have decided to go with MD Anderson for my treatment which should start Monday the 22nd, so little over a week a way, which seems like FOREVER away!!   I did a PET scan on Monday and another CT scan today and radiology  doctor told me the primary is in my left tonsil with several lymph nodes affected on that side  ( which had come up on a previous scan) and that I have two small lymph nodes affected the right side.  I was pretty dissappointed to hear that since the first CT scan did not show any lymph nodes were affected on the right side.  I was hoping to get just the treatment on the left side to save my saliva glands on the right side, but dont think that is possible.  Praying all this cancer gets out of my body completely and soon and some of my salivary glands are saved and/or don't completely stop working.

Glad you are going to MDA, no reason not to be happy with choosing such a solid facility. Time will pass; meanwhile use the time to eat all your favorite foods and especially the most calorie laden ones you usually avoid.

The fact some nodes showed up on the other side is not a bad thing. The fact they were found is surely better than not being discovered and left untreated. My discussions with the RO wer around radiation mapping, contouring, dosage painting, minimizing organ damage and such. If you are concerned about retaining parotid gland function post tx, have a direct conversation about it and make it know it matters. He'll likely review his mapping or chat with the dosimetrist about some tweaks to do less damage. Basically triggering a review is a good idea.

I was under the impression that dosing was only at the identified areas. In fact, a lesser doage is painted over a broader area to ensure a complete kill of the entire area. Lesser in my case was 60 gy which is still enough to harm the glands. My saliva is 100% and I do believe my concerns lead to at least a second look to ensure minimum collateral damage while still killing the beast.

Good luck

don

Goyca said:

good luck , stay strong

Glad u had ur plan set.

starting rads next week, and it will be over soon... Stay strong and check the superthread for some rad advice.

 

good luck

Goyca.

Hi, I am new to this site and have read several people refer to a "superthread".  I am not sure what that is or where to find it.  This site is wonderful,  so inspiring and informative.   Thank you. 

Well I can't add anything to what others have said but wanted to let you know I am praying for you and your caretaker. As a caretaker myself I found lots of encouragement on this thread and answers to a lot of questions. I would encourage your caretaker to follow this thread as well.

Debbie

I was living in Connecticut at the time of my initial diagnosis and my doctor reccomended Yale/New Haven in new Haven CT. I dont think I could have gotten better care anyehere else.I was diagnosised with a rare form of Sinus-Nasal Carsinoma  and required a lenthy treatment-chemotherapy every day a week,one week amonth followed by 35 days of radiation and then finishing with the removal of my upper jaw and removal of th tumor. This occured in 1999-2001 and I have been clean since. So I say do you Have Faith, Trust your Doctors and look forward to a long and enjoyable life!!

duck1255 said:

Treatment center

 My choice was to go to a major cancer treatmenrt center. I live in a small town and wasnt satisfied with the answers from our local oncologist. Went to Cleveland Clinic and it was totally different their treatment plan was more up to date and the out look more positive

The clinic is good I ended up going to University and Dr Zindar did the surgery and all my follow ups so far.My one complant is that he was to slow.Wouldn't take trach out till treatment was done wouldn't take out peg tube till pet scans were done.But either hospital are the best around for care and up to date treatments

Welcome to the family here on CSN H&N, just want to tell you there is nothing to be afraid of many of us all went through the same thing and we are all survivors. It will be hard on you when you start treatment but once you are finish you life gets back to a new normal and you keep on going.

All the best to you as you begin your journey

Tim Hondo