| | Joined: Jan 2012 Posts: 42 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jan 2012 Posts: 42 | Terrific website you folks have created, can't thank you enough. My situation is Tonsil OC, HPV, stage III T1 N1. Diagnosed Nov2011, TORS (robotic) radical tonsilectomy Dec, neck dissection Jan2012. Scheduled for RT 30 sessions across Feb & Mar. Prognosis is pretty good. I'm 55 years young. Taking your advise to get second and third opinion on RT plan which has been an education. Lucky to have wonderful spouse of 30 years taking care of everything. Glad to share any detail if it helps you, will keep using the site for support and education. A couple things which helped me during recovery periods; warm baths seem to melt away some of the discomfort, and those apps to play word games long distance with friends helps pass the time. Keep up the great work!
Nov2011Tonsil Cancer Stage3 T1N1 HPV+, Non-smoker, slight drinker
Dec2011 Radical Tonsilectomy (TORS),
Jan2012 Neck Disection areas 2,3,4
Feb2012 Opinions from 5 RO's decision for No Rads/No Chemo
Jan2013 all clear at 1 year , continue regular check-ups
Jan2014 all clear at 2 years, less frequent check-ups
Jan2015 all clear at 3 years, MRI, chest x-ray, blood work all good
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi welcome! there are a few here who've had similar cancers I'm sure they'll be along soon. Rads is no fun but doable... Eat up now!!!!  And good luck!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Big Mike!!
Welcome to OCF my friend, glad you found us sorry you had to!
Use this site and these forums as much as you need for information and support my friend, it's what we good at! I have to agree with you on the warm bath, actually it was hot showers for me, the only thing that made me feel human during treatment and after surgery.
Be Well and good luck!
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Hi Mike. We're practically neighbors (well, what's 160 miles between friends?). Welcome to the forum and be sure to come here during the hard days ahead for support and help with the issues that are going to be coming up. I don't think anyone is going to lie to you and tell you it's easy. It definately ain't. Eat all the foods you love now, no telling when you'll be able to enjoy them again
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF, Mike! You have found the best place for support and info to help get you thru your upcoming treatments.
Sounds llike you have went thru alot already. Sorry to hear you still have some more steps til you are better.
Word of advice for the future, if you ever get put on the fentanyl patch discontinue the long hot baths. It could cause an overdose. Til then, enjoy! Until you begin your treatments, do your best to eat everything you can. Hope your throat is healed by now.
Best wishes!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Mike:
I also had tonsil cancer (right tonsil), but some of mine had spread to some nodes on the left side. I had 7 weeks of radiation, with one day each week chemo. You didn't mention chemo, so probably your doctors decided you didn't need it. You have a good attitude, and sounds like a wonderful wife, which will help you through your treatments. Like the others said, EAT, EAT, EAT. There will be a time when your mouth will be so sore you won't be able to eat anything but drink liquid supplements. You didn't mention a PEG (feeding tube). Do you have one? Everyone is different, you'll see when you read the posts on this Forum that there are members who never had a feeding tube - maybe you'll be one of those. Hope so. Keep in touch and good luck with your treatments.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Hi Mike, and welcome. Everything about your post gives me every reason to think you're hitting this challenge with the right attitude. And that you've got the perfect partner to help you through it.
Assume (?) they're checking your teeth prior to RT for any potential problems and to fit you with fluoride trays, and also taking a thyroid level as a baseline. You can ask your primary physician about these things if they sound new to you.
Eating up is the best advice anyone could give you right now. There's no question that you've got a tough road ahead... but you can definitely do it!
Keep us posted all along the way, ok?
My best to you.
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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Welcome, Mike.
You seem to have a winning attitude and that's great. I'm so glad you have a good pronosis and a wonderful wife/caregiver. Try your best to be kind to her when you're undergoing treatment and not feeling so well. Our caregivers are so important and have a very tough job. They have all of my respect and admiration.
I wish you the best of luck in your upcoming treatment. As I understand it, it's one of the hardest parts to endure, but it has been done by many of us here. Please keep us posted on your progress as you are able.
Peace and comfort to you and your wife,
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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