| Joined: Sep 2014 Posts: 87 Likes: 2 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2014 Posts: 87 Likes: 2 | Well hello there!
I've been lurking in the shadows, reading these forums for months, gleaning information while I was recovering after my surgery. Everyone is so helpful, and most everything I wanted to know or just needed some reassurance on, was covered in other posts, so I never registered until today.
Here's a little bit about myself. (Ok, after writing this all out, I've found it's no longer just a little bit - more like a little excessively verbose, but I typed all of this up so here goes anyways):
Between Christmas 2013 & New Year's, I noticed what I thought was a coldsore. After it didn't go away for three weeks, I decided to visit the clinic and have someone take a look at it. By this time, it wasn't just a little coldsore - the tongue was starting to eat away at the side. The doctor grimaced, and sent me to an ENT specialist four days later. He also grimaced, and by now I had strong suspicions of what was to come, so that look just basically told me the bad news. Doc asked me to come in for a biopsy at his office in another four days after that. The ulceration on the tongue was getting more pronounced, day by day. Biopsy was not painful at all - I was surprised to see him just take what looked like tweezers, yank out a couple of pieces of flesh from my tongue, and plop them into a little jar of formaldehyde. Fast forward through seven extremely distressing and terrifying days & nights, and they confirmed that it was indeed cancer.
So I was off to see the team of surgeons, radiologists and other various specialists at the cancer center. After visits with various folks, CT scans, blood tests, etc., they book me in for surgery, during which they lop off 7cm x 6cm of my tongue, replace the tongue with a big hunk of flesh from my left wrist, fill in that hole with a skin graft from my thigh, chop out a few lymph nodes from my neck, pop a hole in my throat & jam some tubing in there, place a feeding tube down my nose, then to add insult to injury, they put in a catheter! Yeah, that catheter wasn't a big deal in the grand scheme of things, but it sure hurt taking it back out. Ouch! Really, it was the tracheostomy that was by far the most difficult thing to deal with. Extremely uncomfortable.
In total, I spent 16 days in the hospital. It was kinda boring, and I had what looked like a cardboard french fry container with the bottom cut out of it, taped to my thigh. This was so that my skin graft could heal without the blood sticking to bedsheets or those goofy hospital gowns that make your bum hang out for everyone to laugh at. But at least I had a pretty doctor coming in to check up on me in the mornings, and I could catch up on old Star Trek reruns during the day.
After I got out of the hospital, they made me stay at home instead of going right back to work. It was boring, but I could still watch my Star Trek reruns. After several weeks, they started some radiation on my neck and face. As far as I know, they got all of the cancer out with the surgery and the radiation was just a precaution because they could not remove as much of a buffer strip around the cancereous tissue, in one area of my mouth. I trust the judgement of the team who recommended I still have the radiation. Anyways, they strapped me to a table and put some warm plastic on my head and told me not to move. Or breath. After a few minutes, this plastic mold was hardened enough that they could take it off of my head, and it would magically retain the shape of my melon. So every day when I came in for my daily zap, they made me take my shirt off, not so that everyone could admire my lovely pecs, but to ensure my shirt didn't interfere with my cool mask. They zapped me 25 times over the next five weeks. It wasn't so bad, except for the "light rock" station that they had the radio tuned to. I had been led to believe that the radiation would sap my energy, and/or be painful. Luckily I was one of the few that didn't have much of a problem with this. In fact, I went for a nice little hike with a 850m elevation gain over about 2900m, on my second to last radiation appointment. After a few days, I was able to go back to work for half days, and went back full time two weeks after that. I'm also heavily into paddling & have been to many practices & competed in several races since I've been back. My wrist flap donor site has healed enough that I don't worry about it too much any more. Also of note is a successful completion of backpacking along the West Coast Trail - a rugged 75km hike involving several nights of camping. We did it over seven days.
I attibute my apparently quick recovery to the level of fitness (other than that nasty cancer, of course) that I had achieved over the past few years of paddling. As a member of a fairly competitive dragonboat team, I've been on the water 4-6 days per week and in the gym a couple of times per week. In fact, I had qualified to race at the club crew world championships which were held in Italy this year. Because of the six months of training lost to my surgery and radiation treatment, I had to back away from the team, but I plan to train hard and get myself back up to that level again.
Dx 2014Jan29 (42 yr old otherwise fit nonsmoker) SCC tongue stage III T3N0M0 subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital RAD 25 zaps 2014May5-2014Jun9 Back to work, paddling & hiking shortly afterwards
| | | | Joined: Sep 2014 Posts: 27 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Sep 2014 Posts: 27 | Wow... Inspiring story. Thanks for sharing :-) Congrats!
Caregiver BOT 3 cm 08/24/14 Pet Scan 09/24/14 localized Rad started 10/07/14 Cisplatin started 10/09/14 PEG 10/28/2014 Last Rad 11/26/14 Last Chemo 11/21/14
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | I enjoyed your story. The fact that you haven't let it hold you back is inspiring. God, wish I was young and fit again and could don a backpack and walk for 75 km. Not sure about the paddling. I'd rather be on solid ground:)
Fitness helps, it really does. I've bounced back from four cancer episodes and each recovery has involved a walking programme. I'm up to 80 minutes now.
Agree about the trache - nasty beggars - but another low point was the nausea and loss of taste that goes with radiotherapy. You seem to have motored through that.
Cheers Maureen
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | What a great, inspiring and especially encouraging story. It is really wonderful that you made it through so successfully. I'm sure it will bring lots of hope to others going through the grueling Rad treatments. It really helps to keep on top of all that is recommended to do to make recovery as easy as possible. Thanks for sharing!
Last edited by Anne-Marie; 09-25-2014 05:10 PM.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Great story, Vanpaddler! No doubt the exercise was your best friend through this. Keep on living!
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Sep 2014 Posts: 87 Likes: 2 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2014 Posts: 87 Likes: 2 | Yes, I did lose some of my taste temporarily during and after the radiation. I had lost all ability to detect sweetness, and anything spicy was very tough for me to handle. Even bottled peanut sauce was something I just couldn't take. Thankfully I've recovered almost everything to how it was before. Perhaps I'm a little bit more sensitive to carbonation levels.
It took awhile to be able to eat normally again. Actually I'm still not quite there - it takes me longer to eat than it used to and sometimes my spanky new tongue gets tired out and starts to have difficulty moving food around, but it's pretty good. When I first got out of the hospital, I was on an almost entirely liquid diet. I'd live on juices (thankfully I bought a juicer before I found out about the cancer, in an effort to get more vegetables into my diet), smoothies, milkshakes, and soups. Gradually I was able to add soft foods like pancakes, cream of wheat, etc. It gets better! Now I can eat almost anything again - even sharp and pointy things like nacho chips.
Luckily I didn't have much in terms of nausea during the radiation. In the first few sessions I felt a little bit disoriented and woozy after first getting off the table & standing up.
As far as the hiking goes, there were a few older folks on the West Coast Trail too. A handful of them in their late 60's and 70's. They were keeping up just fine, as we'd see them pull into the campsite every evening. The largest age group was probably in their early 20's, by quite a large margin.
Nothing wrong with just walking. It's a great way to keep fit, work on your cardiovascular health, and stretch out those calves, hamstrings & quads. Very effective fat burner. Instead of driving or taking transit, I actually really love to walk to my practices. It is about 3.5 km (2-ish miles depending on which route I take), and takes me about a half an hour each way.
Dx 2014Jan29 (42 yr old otherwise fit nonsmoker) SCC tongue stage III T3N0M0 subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital RAD 25 zaps 2014May5-2014Jun9 Back to work, paddling & hiking shortly afterwards
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Sounds like you did and are continuing to do great. Keep it up.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Sep 2014 Posts: 27 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Sep 2014 Posts: 27 | Truly inspiring. thanks for sharing. Keep on paddling!
Caregiver BOT 3 cm 08/24/14 Pet Scan 09/24/14 localized Rad started 10/07/14 Cisplatin started 10/09/14 PEG 10/28/2014 Last Rad 11/26/14 Last Chemo 11/21/14
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Great story and great attitude. Glad you posted and doing so well!
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | 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 | Sounds a lot like my story - welcome and so glad you are doing well.
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
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