| | Joined: Feb 2011 Posts: 10 Member | OP  Member
Joined: Feb 2011 Posts: 10 | Geri, it is great to hear from someone in the local area. We actually live in Elk Grove. I would really appreciate the opportunity to ask additional questions. As soon as I figure out how to do it, I'll try to contact you directly.
Really appreciate the encouragement, cause I really need it.
Thanks again and be well!
Len
MEC of left tonsil; MET to left lymph node;HPV16+; tonsillectomy 1/21/11;DX 2/2/11-T1N2M0-Stage IVa-High Grade;TX tentative for 2/21/11; 35xIMRT,3xCisplatin Age 65,smoker until 2010; married to the same wonderful woman for 42 years. 1 daughter and two granddaughters, avid golfer and model railroad.
| | | | | Joined: Jul 2009 Posts: 1,409 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 Likes: 1 | Len, I'm not qualified to comment on whether HPV is relevant to your specific diagnosis. Perhaps someone else will weigh in. However to answer your other question: yes, from everything my docs and others here have told me, HPV as a causative agent, at least for SCC, does generally presage a better outcome. I understand it has to do with the fact that such tumors respond better to therapy. I'm sure you'll get an answer on MEC before long. D2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Feb 2011 Posts: 10 Member | | OP Member
Joined: Feb 2011 Posts: 10 | I talked with my ENT and he is arranging for HPV testing. Since my diagnosis appears to be RARE or VERY rare, I've requested a second opinion at a nearby NCI CCC at UC Davis.
MEC of left tonsil; MET to left lymph node;HPV16+; tonsillectomy 1/21/11;DX 2/2/11-T1N2M0-Stage IVa-High Grade;TX tentative for 2/21/11; 35xIMRT,3xCisplatin Age 65,smoker until 2010; married to the same wonderful woman for 42 years. 1 daughter and two granddaughters, avid golfer and model railroad.
| | | | | Joined: Mar 2010 Posts: 20 Member | | Member
Joined: Mar 2010 Posts: 20 | Defiantly get a second opinion. It seems like you might be questioning the HPV test. Am I reading into this correctly?
Squamous cell, tongue
First biopsy 2006, Stage 1 2008, 2010, 2012, 2013
To date: 13 surgeries & 3 nonsurgical biopsies
| | | | | Joined: Feb 2011 Posts: 10 Member | | OP Member
Joined: Feb 2011 Posts: 10 | No, I requested the HPV test.
MEC of left tonsil; MET to left lymph node;HPV16+; tonsillectomy 1/21/11;DX 2/2/11-T1N2M0-Stage IVa-High Grade;TX tentative for 2/21/11; 35xIMRT,3xCisplatin Age 65,smoker until 2010; married to the same wonderful woman for 42 years. 1 daughter and two granddaughters, avid golfer and model railroad.
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