#22347 02-21-2007 09:32 AM | Joined: Feb 2007 Posts: 3 Member | OP  Member
Joined: Feb 2007 Posts: 3 | Hello all,
I am sitting here at the hotel connected to the MD Anderson cancer center in Houston. I have been reading your posts, so thought I would give our story. My husband, Brad, is 36 years old. He was diagnosed in April 06 with tongue cancer. He had 1/3 of his tongue removed in May 06. He had both radiation and chemo during the summer for 8 weeks. During this time a small spot on his neck was discovered to be cancer. After the treatment, we had a petscan in Sept 06. All was clear. Then in December 06, we had another one. It showed the cancer had returned. We came to MD Anderson this time after being treated in Arizona the first time around. We have been here for 4 weeks now. He had surgery on Feb 2nd 07, removing 80% of his tongue. It was reconstructed using a skin graft from his thigh. He had a radical neck dissection on both sides. He had a trach placed due to the swelling. It was awful. He is just now trying to recover. He has a feeding tube. We are currently waiting to get a swallow test next week to see if he can begin eating pureed foods. He speaks pretty well considering what he has been through. He will be having speech therapy here in the next few weeks. We met with the oncologist today. He is recommending a 6 week chemo plan as a follow up to the surgery. It seems like this will never end! My husband has never been a smoker or drinker. So, he doesn't fit the norm. After having said all of this, we are so glad to be here at this center. The staff is wonderful! We just hope that when all is said and done, that it won't re-occur again. Thanks for listening.
Angela | | |
#22348 02-21-2007 10:09 AM | Joined: Jan 2007 Posts: 108 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2007 Posts: 108 | Hi Angela,
Well glad you found us. Your husband sounds similar to me -- 32 at diagnosis, no risk factors at all, but yet I still am missing 1/3 of my tongue and lymph nodes, etc. from the right side of my neck. I also had a trach tube post surgery for about 8 days. I went through radiation but no chemo.
Sounds like you are in good hands at MDA.
As always, if you have questions, fire away.
Take care and both of you fight hard.
Jim
T3N2aM0 SCC right oral tongue. Partial Glosectomy, Modified Neck disection for 1 Lymph Node. Dec. 2002. 35 IMRT 2003.
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#22349 02-21-2007 10:09 AM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | Angela,
Welcome and so sorry you are here. It's good that you are being treated at MD. Stay storong and if you need any helpful advice or just want to talk, we're here for you.
Tim
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#22350 02-21-2007 12:07 PM | 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 | Angela, Was he tested for HPV?
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#22351 02-21-2007 02:03 PM | Joined: Feb 2007 Posts: 3 Member | | OP Member
Joined: Feb 2007 Posts: 3 | David, No, he wasn't tested for HPV. Why do you ask? Angela | | |
#22352 02-22-2007 03:28 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Angela, Research at Johns Hopkins, where they test 100% of new oral cancer patients, indicates that 70% or more of new oral cancer patients test positive for HPV. That is the same virus that is now linked to cervical cancer. The recommended treatment is almost the same regardless of how one contracts this cancer but Hopkins says that HPV+ oral cancer responds better to the treatment and has a lower reoccurrance rate compared to non HPV+ oral cancer. I was treated at Moffitt and they don't test for HPV even though they told me I was likely positive. I just (last Friday) had them send my samples away to be tested. They sent them to Hopkins telling me they were the only CCC testing for HPV. If possible, I want to know how I got this cancer. Just for me. Gail Mac is a fountain of knowledge on this topic as her husband is participating in a HPV vaccine trial at Hopkins. Gail, if I have misstated any facts, please correct me.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#22353 02-22-2007 03:36 AM | Joined: Jan 2007 Posts: 108 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2007 Posts: 108 | Angela, David is unfortunately very right in this situation. My doctors were sharp and mentioned it up front before the surgery, even 4 years ago. They asked me point blank if I had had oral sex with a female that had tested positive for cervical cancer. The pathologist did not find any traces of HPV in my tissue removed so I still do not have a reason as to why I got the cancer. Jim
T3N2aM0 SCC right oral tongue. Partial Glosectomy, Modified Neck disection for 1 Lymph Node. Dec. 2002. 35 IMRT 2003.
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#22354 02-22-2007 04:31 AM | Joined: Oct 2006 Posts: 248 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2006 Posts: 248 | Angela, I am so sorry that you and Brad have to face this again. It breaks my heart to see so many young people getting this horrible disease. Hopefully they can eradicate all of it this time and Brad and you can have a long an uneventful life together. Feel free to vent it helps to heal the mental process. Wishing you and Brad the Best.
Always,
Mark
Mark D. Stage 3 Nasopharynx dx10/99 T2N3M0 40xrad 2x Cisplatin 5FU. acute leuk 1998.
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#22355 02-23-2007 07:56 PM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Jim.....David.....You say that your tissues were sent to another institution for testing....do all institutions keep tissue samples from surgical removals? I would like to have mine tested also. I have no reason to think that I have HPV, but I would like to know, just for me, as David says. Also, those oral cancers suspected of being caused by HPV are reported to be more responsive to treatments, and I would like to know if I had one more thing going in my favor.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#22356 02-26-2007 03:05 AM | Joined: Jan 2007 Posts: 108 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2007 Posts: 108 | August,
Actually, the pathologist was on hand during my surgery in the operating room to test the tissue as they removed it (accorrding to my memory). As far as institutions keeping tissue, I have no clue on what an individual hospital's rules are regarding that.
Jim
T3N2aM0 SCC right oral tongue. Partial Glosectomy, Modified Neck disection for 1 Lymph Node. Dec. 2002. 35 IMRT 2003.
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