#23288 05-28-2007 01:20 AM | Joined: May 2007 Posts: 22 Member | OP Member Joined: May 2007 Posts: 22 | Hello, everyone. I was diagnosed in early April after an allergist found an enlarged lymph node that didn't go away. I've never smoked and don't drink much so my doctor wasn't all that concerned but after 3 weeks we did a CT scan that turned up SCC in the right tongue base with a couple of nodes. A PET/CT scan confirmed this but showed no metastatic spread. A tongue biopsy followed and then a lot of meetings with various doctors until I settled on a treatment plan.
A neck dissection followed and then the pre-radiation "sims" and dental shield. Had an "induction" round of chemo because the neck biopsy found a Level 3 node that didn't show up on the scans and all 3 were extracapsulated.
Just had a port put in for the chemo, my 3rd surgery in the last 6 weeks. But all the pretreatment stuff is done now and I'm waiting to begin radiation and chemo on June 4th. I'm a bit nervous but also very glad to be starting the primary treatment. It seems like forever since the initial diagnosis and I know this cancer moves fast.
I am very glad to have found this Patient Forum. My wife has had breast cancer, twice, both 12 and 16 years ago and I know how much that Forum meant to her.
At the same time, I admit it's been hard to write this first post. I've always been a very private person and much more comfortable taking care of others than asking for help myself. So I see that this cancer is also an opportunity for me to go beyond a lot of self-imposed limitations. My wife says that she's much happier now, after the two cancers, than she was before. I always understood that intellectually, but now see it in an entirely different way.
I have some questions to pose to the group but will put them in separate emails later.
David R
Age 60, SCC Right Tongue Base DX - CT scan 4/9/2007 Tongue biopsy 4/19; Neck diss 5/8 T1N2bM0G3 IMRT x48 [2/day] to start 6/7 w/ 5-FU, hydroxyurea & Erbitux
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#23289 05-28-2007 01:45 AM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Welcome, David. The first step can be the hardest, and you've already taken it.
To help you get started, OCF has two search engines. The one at the top of each of these forum pages (in the center, under the New Topic/Post Reply buttons) links to a search of the message boards -- be sure to search "All Open Forums" to maximize your results. The link at the bottom of each of these pages (toward the right in the dark gray area) goes to a search of the main OCF site, which Brian and other administrators keep updated with the latest treatment protocols, news articles, reports in scientific journals, etc. It also includes a lot of basic reference material about oral cancer.
And if those don't address whatever you want to know more about, the people on these boards can answer any question you throw at them.
We'll all be thinking of you as you begin your treatment next week.
-- Leslie
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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#23290 05-28-2007 04:00 AM | Joined: May 2007 Posts: 22 Member | OP Member Joined: May 2007 Posts: 22 | Thanks, Leslie
This is very helpful information. And you're right, I felt much better after sending that first post. It's amazing how hard it seemed before and how easy it seems now.
All best, David
Age 60, SCC Right Tongue Base DX - CT scan 4/9/2007 Tongue biopsy 4/19; Neck diss 5/8 T1N2bM0G3 IMRT x48 [2/day] to start 6/7 w/ 5-FU, hydroxyurea & Erbitux
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#23291 05-28-2007 04:24 AM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Welcome, David and Best luck with your tx. OCF will be a great help to you [and your wife as caregiver]. Don't hesitate to "ask away". Take care. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#23292 05-28-2007 04:38 AM | Joined: May 2007 Posts: 22 Member | OP Member Joined: May 2007 Posts: 22 | Thanks, Amy. I feel good to be finally connected to the group. It's been something I've been putting off for a month while lurking in the background. Reading the many posts has been very helpful but I'm glad to finally be fully participating. David R
Age 60, SCC Right Tongue Base DX - CT scan 4/9/2007 Tongue biopsy 4/19; Neck diss 5/8 T1N2bM0G3 IMRT x48 [2/day] to start 6/7 w/ 5-FU, hydroxyurea & Erbitux
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#23293 05-28-2007 05:46 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | David, Have you been tested for HPV? Judging by your post I would assume you would test positive.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#23294 05-28-2007 08:57 AM | Joined: May 2007 Posts: 22 Member | OP Member Joined: May 2007 Posts: 22 | Thanks for the reminder. I have not yet been tested for HPV and, like you, assume I would test postivie. It's on the long list of things I still need to do. My wife wonders if she should also be tested -- do you know anything about spouses? David R.
Age 60, SCC Right Tongue Base DX - CT scan 4/9/2007 Tongue biopsy 4/19; Neck diss 5/8 T1N2bM0G3 IMRT x48 [2/day] to start 6/7 w/ 5-FU, hydroxyurea & Erbitux
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#23295 05-28-2007 10:02 AM | Joined: May 2007 Posts: 231 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2007 Posts: 231 | Welcome aboard David,
I did the same thing as you have done and signed up and kinda sat around in the shadows for awhile. I now only have 3 Tx to go and am looking forward to a more " normal " life. As you can see I have returned here and I can promise you that you will find none better for helping with your needs than the ones here on this forum.
Dx Mar 07 with Base Of Tongue Stage IV. IMRT 35x with 3 doses Cysplatin ran concurrent. Tx ended May 31,07. Left and right node involved. Radical neck disection 7/18/07
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#23296 05-28-2007 10:23 AM | Joined: Apr 2006 Posts: 378 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2006 Posts: 378 | Hi David, there's tons of information on this subject that you can find by doing a search on the forum and the home page. The testing process for head and neck cancers caused by the HPV 16 virus is done on your tumor slides, and not all hospitals do the test. We had Jack's slides sent to Johns Hopkins in Baltimore because it wasn't available locally. That said, it won't change your treatment plan. We didn't worry about it until after he was thru the chemo/radiation - too much going on. Jack's was positive but there are others on the forum that also had no risk factors and tested negative. About 4 months after treatment Jack participated in a clinical trial at Hopkins testing a vaccine. This is only a phase 1 trial so they don't know what the best dose is or if it will work in preventing recurrence. It is not the same as the guardisal vaccine you are probably seeing ads for on TV for cervical cancer. The test for your wife would be handled thru her GYN, that's a simple process. I think that's a good idea in general and please feel free to have her send me a private message if she has specific questions. Good luck next week. This too shall pass. Jack found the mask was hard to deal with and used Ativan for that. Make sure you are getting between 2-3 quarts of liquid as well as 2200 calories or more daily. That's the best way to assist your body to handle the treatments. Are you going to have amifostine injections? If so, it's even more important to stay well hydrated. Keep swallowing and stretching your mouth muscles open and closed to prevent trismus later - also lots of information on that subject. Regards JoAnne
JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
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#23297 05-28-2007 02:59 PM | Joined: May 2007 Posts: 22 Member | OP Member Joined: May 2007 Posts: 22 | Thanks, Billy and JoAnne. I appreciate the warm welcome and the good advice. I am not having amifostine injections. I will ask the docs about that. I plan to read more on the forum about dealing with the effects of these treatments. I did not have a problem with the mask during the sim and the follow-up x-ray, but who knows how the actual treatment will go. I take Klonopin when I feel especially anxious. Thanks again, David
Age 60, SCC Right Tongue Base DX - CT scan 4/9/2007 Tongue biopsy 4/19; Neck diss 5/8 T1N2bM0G3 IMRT x48 [2/day] to start 6/7 w/ 5-FU, hydroxyurea & Erbitux
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