| | Joined: Nov 2013 Posts: 18 "OCF across the pond" Member | OP  "OCF across the pond" Member
Joined: Nov 2013 Posts: 18 | Hi, Just a short update about what's going on at the moment. A mix up with my outpatient's appointment means I will not get my pathology results re lymph nodes from my neck until next Wednesday. Today I had an appointment with Plastics to review the skin graph and all is well there. They seem pleased with the way it has taken. They seem to think the dark purple colour is normal which is something of a relief. Now have to wait and hope for the best Christmas present ever 'clear lymph nodes'. Here's to keeping everything crossed X 
Cheryl aged 50. Long time smoker but quit 4 years ago - rarely drink alcohol
Referred oral health 17th Sept '13 -
Incisional biopsy right tongue 23rd Sept '13
MRI 30th Sept '13
Confirmed invasive moderately diffirentiated SCC 2nd October 2013 - Chest Xray and MRI Clear
Surgery planned 12th Nov '13 Partial glossectomy, neck dissection, flap from forearm.
Surgery cancelled - non-availability of HDU bed
Surgery resceduled 18th Nov '13
Fighting fear on a daily basis but keep smiling.
| | | | | Joined: Nov 2013 Posts: 29 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Nov 2013 Posts: 29 | Thanks for the update Chris.
I hope you get your Christmas present earlier in the way of good news.
Blessings"
Patty
Patty / husband Dx with Stage 1 SCC
November '12, BOT ulcer
June '13, first biopsy-negative.
October '13, second biopsy-positive
November '13, second opinion at CCC, T1
December '13, partial glossectomy.
September '14, biopsy on lymph nodes, 1 tested positive.
October '14, right side neck dissection. 14 nods out, with only one affected.
November '14, T1N1M0 radiation in the recommended by oncologist
December '14, radiation treatment
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Why would you wait? call your family dr and ask for the results!
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: Nov 2013 Posts: 18 "OCF across the pond" Member | | OP "OCF across the pond" Member
Joined: Nov 2013 Posts: 18 | Can't sleep tonight - can't seem to switch off. I get my pathology results on Wednesday. I know Cheryld asked me why I would wait and why I didn't just get the results from my GP - I guess if I'm being honest it's for the simple reason that I'm scared and that while I don't have the results I can kid myself a bit longer that I'm cancer free and maybe I am... If I'm not however, it's the beginning of the next part of my treatment and I have to say that the thought of rads scares me probably more than the thought of surgery did. Don't get me wrong, I may be hiding from the truth for an extra week but I will face whatever I need to head on when I have to. But for tonight, the thoughts just won't stop. My neck seems to hurt tonight where the dissection wound is and the pillow seems to be too hard so I can't get comfortable; my arm where the skin graph is itches like hell and it's all I can do not to scratch. This has turned into something of a rant from someone who is feeling particularly sorry for herself tonight so while I'm at it I add one more thought. I am bloody sick of mash potato!!!
Cheryl aged 50. Long time smoker but quit 4 years ago - rarely drink alcohol
Referred oral health 17th Sept '13 -
Incisional biopsy right tongue 23rd Sept '13
MRI 30th Sept '13
Confirmed invasive moderately diffirentiated SCC 2nd October 2013 - Chest Xray and MRI Clear
Surgery planned 12th Nov '13 Partial glossectomy, neck dissection, flap from forearm.
Surgery cancelled - non-availability of HDU bed
Surgery resceduled 18th Nov '13
Fighting fear on a daily basis but keep smiling.
| | | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2013 Posts: 346 Likes: 3 | Mashed sweet potatoes? With marshmallows or butter or brown sugar?
Sorry, couldn't resist. Although it actually makes me want dome. . .
I get my next results Wednesday too. Will think of you then. We can panic together.
Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Butternut squash. Potato salad. Egg salad.  the only reason is suggested not to wait is it actually helps knowing if you're negative and clear the next few days will be more relaxed if you're facing treatment you would get a jump on it.. 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: Nov 2013 Posts: 18 "OCF across the pond" Member | | OP "OCF across the pond" Member
Joined: Nov 2013 Posts: 18 | I have just got home from my outpatient appointment. The news is very good. They got all the tumor and my lymph nodes are clear so no follow up treatment necessary. Monthly check-ups and scans for the next 2 years, then 2 monthly appoints for 2 years, then 6 month appointments in the fifth year. Figured I'd just get on with living my life and feel very grateful for being given this blessing. Love and hugs to all Cheryl
Cheryl aged 50. Long time smoker but quit 4 years ago - rarely drink alcohol
Referred oral health 17th Sept '13 -
Incisional biopsy right tongue 23rd Sept '13
MRI 30th Sept '13
Confirmed invasive moderately diffirentiated SCC 2nd October 2013 - Chest Xray and MRI Clear
Surgery planned 12th Nov '13 Partial glossectomy, neck dissection, flap from forearm.
Surgery cancelled - non-availability of HDU bed
Surgery resceduled 18th Nov '13
Fighting fear on a daily basis but keep smiling.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | So awesome and soo glad to hear!!
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: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Sep 2013 Posts: 105 | Hi Paul,
So there is hope? Numbness and strange tingling sensation can go away with time after a modifying radical neck dissection? Any luck with the tightness of the skin after fibrosis?
My husband just mentioned today that it feels like his neck is getting slightly tighter but it may be from all the stretching and neck exercises.
We had sushi tonight after his first day of radiation and he still has to cut the rolls in smaller pieces but really enjoys sushi more than any other food.
Thanks for the bit of hope, Sophie
husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
| | | | | Joined: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Sep 2013 Posts: 105 | So happy for you Sheryl S,
What great news and so much to be great-full for! Your joy is definitely palpable, cheers to you and your enthusiasm. So glad to hear you have loved ones to celebrate and be there with you through all of this. My mom helped us out a lot by cooking up all the carrots in our garden into a soup and making pasta, wild rice and sea food casserole to last us for months. She was also there for me when I was nursing him at his bedside. Its just as important to share the difficult times as it is to share the triumphs!
Sophie
Keep us up to date on your recovery process
husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
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