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#24151 08-27-2007 06:41 PM
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"OCF across the pond"
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Good luck with your appointment Bill let us know your full Dx as soon as you can


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
#24152 08-28-2007 03:56 PM
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I have my first real meeting with Drs. on Thursday (8/30) to review treatment etc....Do most people get 2nd/3rd opinions ?

Any suggestions where to go ? I can go almost anywhere but would perfer South and east coast.

Thank all of your for your guidenance and sharing your experiences.

Bill Van Horn


Bill Van Horn-53 ex-smoker, social drinker, Biopsy 8/24, Diagnosed 8/30/07 BOT T2N2-B MX Stage IV. Started treatments 10/1/07. IMRT 35 x, Cisplatin - 3 cycles - completed treatment 11/16/07. CT Scans on 1/15/08 all clear Selective neck dissection 1/28/08. All nodes clear.
#24153 08-29-2007 07:45 AM
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I went to Ohio State James Cancer center for a 2nd opiinion after going to WVU hospital in Morgantown WVa. It was well worth getting the 2nd opinion at James Cancer Center. WVU wanted to take at least half my tongue , insert a feeding tube into my stomache , put a trach in me , among other things, and only gave me a 50- 50 chance of making it. Dr Ozer at James Cancer Center said he didn't think it was that bad , so natuarally I let him operate. He did take a large part of my tongue and part of the floor of my mouth and 3 lymph nodes out of my neck. I went to the Center yesterday for a cat scan and a pet scan. I see the Dr the 4th of Sept for the results. I am back to eating and feel good. I have no trach or feeding tube and am so glad I got the 2nd opinion. I haven't gotten the results from the lymph nodes but will the 4th. I say go for the 2nd opinion. The people on here convinced me to get the 2nd opinion and I owe them a lot. Here's wishing you well and have you in my prayers.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
#24154 08-29-2007 08:26 AM
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Would recommend a second opinion, even if you stay with your local docs.

Each doctor brings up things that haven't been discussed previously...just gives you more information to make a decision. In our case, our ENT was a poor communicator...we got a better idea of the scope of things at our second opinion at a Comprehensive Cancer Center (H. Lee Moffitt in Tampa, FL.) They were familiar with our docs (MO and RO) and gave us assurance that we could be treated locally successfully.

I know you are on overwhelm, and the thought of another set of doctors in just too much, but put your head down, look for a Comprehensive Cancer Center, Head and Neck Clinic, and call for a quick appt. Our insurance allows for a second opinion. We were able to be seen within just couple of days....don't let it drag on.

My thoughts are with you during this most stressfull time. Do you have someone that can help you...go with you...be a second set of ears?? You need that right now...lots coming at you.

Good luck, Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
#24155 08-29-2007 11:20 AM
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Hi Bill....glad your here.. i would say the best bet is the 2nd opinion.. beleive me i know it made a difference in our lives by going.. i say learn all you can learn and go with what you feel is best for you but i do recomend that 2nd opinion so you have something to go on in compairison...
oh and Bill do you by any chance know any Van Horns in Ohio...i was married to a Van Horn and all 3 of my children are Van Horns..


Barb
#24156 08-29-2007 11:53 AM
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Bill, I forgot to mention my great grandmother was a Van Horn. Her family dates way back in history. Possibilty?


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
#24157 08-29-2007 12:29 PM
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Bill: As you are likely aware by now, your other options for recognized cancer centers in the area are Duke and Chapel Hill.

Good luck to you! Let us know of your progress... Lois & Buzz


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#24158 08-29-2007 12:42 PM
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Bill...
Sorry to hear about your recent diagnosis, you will be in my thoughts and prayers.
It's a big curvy journey but the above advice is all very good. Take notes when talking to your doctors. Prepare questions before appointments. Ask for clarification when you are not sure and don't understand.
As for second opinions...get all the opinions you need and go with the one that makes you the most comfortable. Unfortunatly there are no golden bullets in cancer therapy....but your gut and heart felt feelings count, listen to them.
Remember, the only stupid question is the one you don't ask.

I'm pullin for you.
E-mail me anytime.

Mike


Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
#24159 08-29-2007 01:44 PM
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Hello all,
My name is Judy and I am CG for my husband Jack. Jack had an enlarged LN on the right side of his neck after a sore throat back in March. We didn't do anything initially assuming that the node would subside on it's own (I am a nurse, which explains away the nonchalant attitude!!!!!!!!!). When it didn't subside, we began with our family doc in June and he referred us to ENT who gave us a 90/10% chance that the node enlargement was related to cancer. Indirect laryngoscopy revealed a 3-4 cm mass at or near the base of his tongue/right tonsil. My husband is somewhat unconventional and his initial reaction was to run! He took a week long trip up to Vermont, our favorite place on earth and reflected on his diagnosis. He talked to the folks at Dartmouth and they told him that he needed to get home and get started on his treatment.
Jack, being unconventional, decided that he needed to go straight to the horses mouth, the person who would be staging and directing his treatment. So after some delay, we saw Dr. Roger Anderson at Rex Cancer Center in Raleigh NC. Our diagnosis: SCC at the base of his tongue, Stage III/IVA, T1, N2 unilateral, M0. This dx was made without direct laryngoscopy so we are back tracking a little and having the scope tomorrow. Should the result of the scope be the same as the dx above, Dr. Anderson has given us a choice of Fractionated IMRT with 38 treatments and the last 2 wks will be twice daily vs. 30 IMRT/Cisplatin x 3 doses. Dr. Anderson says that he expects the tumor as well as the nodes to shrink/disappear during the RT but if not then surgery to remove. After reading ALOT about this, I am somewhat concerned that some sites are recommending surgery first followed by RT. Dr. Andersons' response to that is that the RT will not have to penetrate scarring etc making it more likely to shrink/destroy the tumor. I do hope he is right. We both like him and trust him but we will wait until the result of the scope to finalize the treatment plan.
Thank you for allowing us to participate on the OCF site and we will keep you posted on our treatment course.
Judy and Jack


Judy and Jack

Judy CG, Jack: Age 64,never smoked, heavy drinker 18 yrs sober, Base of tongue(BOT) cancer,scc, stage III/IVA, T2, N2, M0 Diagnosed 6/07, Treatment at Rex Cancer Center, Raleigh NC, Treatment Plan: Undetermined at this time
#24160 08-29-2007 03:04 PM
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Barb T/Jim: I have cousin but I think he is NJ. The Van Horn tree is not very large. The relatives I do know are in the NJ area.

All - Thanks for the prayers and ideas. I am definatly getting a 2nd opinion and maybe a third. I am blessed that my wife does not work and can keep me straight. I have the ability to be out of work and do what I need to do to beat this thing-almost ready for tomorrow.

Bill V


Bill Van Horn-53 ex-smoker, social drinker, Biopsy 8/24, Diagnosed 8/30/07 BOT T2N2-B MX Stage IV. Started treatments 10/1/07. IMRT 35 x, Cisplatin - 3 cycles - completed treatment 11/16/07. CT Scans on 1/15/08 all clear Selective neck dissection 1/28/08. All nodes clear.
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