| | Joined: May 2012 Posts: 47 "OCF Canuck" Contributing Member (25+ posts) | OP  "OCF Canuck" Contributing Member (25+ posts)
Joined: May 2012 Posts: 47 | I am a 58 yo male and was diagnosed with stage 4 squamous cell carcinoma back in March 2012. Had CT and MRI to determine the spread and had a 10 hour surgery on April 27. Most of my tongue was removed and a flap was reconstructed from a section of skin taken from my left thigh. For the most part I live a very healthy life. Work out at the gym everyday. don't smoke or drink. My father did have esophageal cancer but survived for 15 years after radiation.
At this point, I am awaiting the recovery from the surgery before the radiation and chemo begin. It will last 33 days for the radiation and only 2 chemo sessions, one at the beginning of the radiation period, and the other at the end. I will have to stay overnight at the hospital for the chemo treatments.
I recovered pretty fast after the surgery and was discharged from the hospital in less than 2 weeks, almost a week earlier than the original estimate. One surprising thing is that I can still speak, not as clearly as before cancer but everyone said that they can understand me pretty well. The doctors were pretty surprised. The radiation oncologist actually said he was "dumbfounded" that I was able to have a conversation with him.
The surgeons remove 90% of my tongue, and all the lymph node from the neck, jaw, etc. a total of 55. The pathology report came back pretty positive, that there was no cancer found in any of the 55 lymph nodes. That is why I don't need full chemo, just 2 sessions to be on the safe side.
I do have a very strong support network, from my church, family and friends. My church has been rallying around my case to have special prayer group meetings after the service for several weeks. The brothers and sisters provide overwhelming support of visits, email, some even offer to help with housework. I exchange email daily with my brothers and sisters back home and that is also a source of strength. My family has been by my side all this time. Last but not least, I have a strong faith and through prayers I found the most strength. I think all of this accounts for my speedy recovery after surgery. I am not out of the woodwork yet but based on what I have seen, I have a strong feeling that I will do really well.
Joseph 59 male
pain in tongue strt 2/10/12, Dx SCC 3/19/12, confirmed Stg IV 4/5/12,
Total Glsctmy & recon w/ flap from L thigh, neck disct, trach 4/27/12
G-Tube 5/1/12
55 nodes all clear
completed 2 chemo 33 rad
non-smoker, non-drinker, exercise daily, mostly vegetarian diet...go figure
| | | | | 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 there - welcome! I'm from Mississauga - are you being treated at PMH? Who was your surgeon. Misskate a member here has had her entire to tongue removed as well and is doing amazing, she speaks eats and tastes! Radiation will make you stiffer in the neck area if you've had a neck dissection. We're here if you have any questions - I've been through it too. Hugs!
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: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Welcome to OCF! Glad you have found our site to help you with info and support. Sounds like you have a good attitude and are doing very well with your recovery. Wishing you all the best with your continued recovery and future treatments.
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: Jan 2012 Posts: 112 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2012 Posts: 112 | Hi
we had a coincidence: almost the same number of nodes removed, and no cancer in then.
Just wondering: my doc did not recommend chemo or radiation, i guess because my tumour was smaller? Just wondering...
December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
| | | | | Joined: May 2012 Posts: 47 "OCF Canuck" Contributing Member (25+ posts) | | OP "OCF Canuck" Contributing Member (25+ posts)
Joined: May 2012 Posts: 47 | Hi Cheryl,
I had surgery at TGH (which is in the same UHN as PMH) by Dr Irish and Dr Goldstein. I'm very interested in finding out h ow other patients with similar complete tongue removal recover, how fast and how soon were they able to east, speak and taste.
What you mentioned about misskate is very encouraging. How soon did she recover the taste, speech and eating? Did she have a reconstructed tongue also. That was amazing.
Joseph 59 male
pain in tongue strt 2/10/12, Dx SCC 3/19/12, confirmed Stg IV 4/5/12,
Total Glsctmy & recon w/ flap from L thigh, neck disct, trach 4/27/12
G-Tube 5/1/12
55 nodes all clear
completed 2 chemo 33 rad
non-smoker, non-drinker, exercise daily, mostly vegetarian diet...go figure
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Here is a link to misskate's profile. Thru this link you can read her profile, her posts, and even contact her thru a private message (PM). http://oralcancersupport.org/forums/ubbthreads.php?ubb=showprofile&User=4087
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: May 2012 Posts: 47 "OCF Canuck" Contributing Member (25+ posts) | | OP "OCF Canuck" Contributing Member (25+ posts)
Joined: May 2012 Posts: 47 | Thank you Christine. I'm hoping for another full recovery. I do feel good and my spirit is strong.
Joseph
Joseph 59 male
pain in tongue strt 2/10/12, Dx SCC 3/19/12, confirmed Stg IV 4/5/12,
Total Glsctmy & recon w/ flap from L thigh, neck disct, trach 4/27/12
G-Tube 5/1/12
55 nodes all clear
completed 2 chemo 33 rad
non-smoker, non-drinker, exercise daily, mostly vegetarian diet...go figure
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | I picked up your positive attitude from your very first post. Im a firm believer that having that type of attitude really does make it easier and you will do better than someone who is angry or depressed. Keep that going and keep your family close and it will all be just a distant memory next year this time. It sounds to me like you are making excellent progress and your doctors are expecting a full recovery. Keep up the good work!!!
PS... Miss Kate is a great example of what hurdles a person can overcome and go on to thrive.
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: 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 | Hey! You are darn lucky! Dr Irish and goldstein we're my surgeons! Thats probably the primary reason you can talk etc... Seriously they are the best! My tongue looks almost perfect though its still a bit chubby at times do to lymphedema. They did my surgery a year ago February! Who is your rads dr? Mine is dr. Cho. Hes also very talented - but not terribly personable! Not that I care... As long as he did his job well. Radiation will effect your tongue for a while. It keep doing your exercises and it will heal. miss Kate is truly an inspiration. You'll get through this.
Last edited by Cheryld; 05-19-2012 05:51 AM.
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: May 2012 Posts: 47 "OCF Canuck" Contributing Member (25+ posts) | | OP "OCF Canuck" Contributing Member (25+ posts)
Joined: May 2012 Posts: 47 | Hi Cheryl ,
Dr Bayley is my radiation specialist. he is very personable. just saw him 2 days ago. He Actually said he was dumbfounded that i was able to have a conversation with him.
Kate is certainly an inspiration and with her I'm even more hopeful that i will regain my speech, eating and taste!
Joseph
Joseph 59 male
pain in tongue strt 2/10/12, Dx SCC 3/19/12, confirmed Stg IV 4/5/12,
Total Glsctmy & recon w/ flap from L thigh, neck disct, trach 4/27/12
G-Tube 5/1/12
55 nodes all clear
completed 2 chemo 33 rad
non-smoker, non-drinker, exercise daily, mostly vegetarian diet...go figure
| | |
| Forums23 Topics18,168 Posts196,924 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
