| Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Caripe Diem, many had surgery as their only treatment for early stage tongue cancer, and never looked back since, and wish the same for you. Good luck with surgery, of all dates, but may this bring in a better New Year for 2014. If you can stand that cold, you can do anything, not me Brrr.
Take care
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | Best wishes for a successful surgery. I will be waiting to see your post that all is ok.
Happy New Year! 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: Nov 2013 Posts: 29 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Nov 2013 Posts: 29 | Carpe Diem,
I'm glad you were diagnosed at an early stage.
I pray surgery is all you need, and for God's sake stay warm. Patty Elle
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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Yes, we're all hoping you need only surgery. But, if that turns out not to be the case, you know where to come for all the support you will ever need. We're here for you.
take care, good luck
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Oct 2013 Posts: 1 Member | Member Joined: Oct 2013 Posts: 1 | Just a note of encouragement to you. I had a squamous cell carcinoma removed from my tongue Friday, September 27th and was home the following Monday, eating by mouth, swallowing, & talking. I was told I needed the surgery the previous tuesday, so I did not have the time, really, to go online to read forums and get a lot of information. Sort of glad I didn't. No sign of any spreading into neck. My ENT surgeon wants to see me every 6 weeks for a while, have a CT scan every 3 months for a year, then once a year for 5 years.
My very best wishes to you.
| | | | Joined: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | "OCF Canuck" Senior Member (100+ posts) Joined: Sep 2013 Posts: 105 | Hi Carpe,
As my husband's advocate, I contacted everyone I knew worked in the medical field and was given this advice on the get go: When you call any doctor's office and you have the sense you are not able to get through beyond the administration simply say, 'I would like to have the doctor call me back on this issue'! Now I only used this in the critical planning phase because any lost information or tests that might not get pushed along delays your treatment. I also made a point to ask for a copy of my husbands records, that way there is no wasted time and I was also able to better understand his diagnostics by reading the results myself!
I get the feeling you are very pro-active! I spent my first Christmas away from my family in Prince George in 1999 before moving to Vancouver for a few years. My little sister lives just in the outskirts of Vancouver.
You go Girl! Best to you, 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: Nov 2013 Posts: 33 "OCF Canuck" Contributing Member (25+ posts) | OP "OCF Canuck" Contributing Member (25+ posts) Joined: Nov 2013 Posts: 33 | First, Happy 2014 folks. I got the last computer problems fixed yesterday. Apparently Windows 8 doesn't like accepting "legacy equipment", i.e. old stuff like my Keytronic Dvorak keyboard.
Thanks Sophie T and all who have been so encouraging. My first name is Norman, 59, and I have never been a smoker.
I had my surgery at Vancouver General on Dec.31/2013. They put me on the 12th floor looking north over Granville Island, downtown, and the North Shore Mountains. There were some interesting fireworks displays throughout the night.
Anyway things certainly went well this time. The previous two biopsies were by scalpel and stitches. This was done by laser. He took a good 1" strip off my tongue (R/H underside) from about the midpoint, back to where it starts down my throat. He also took what he called a papilloma off the top of my vocal cords, a two-for-one deal! That evening for supper and New Year's Day morning for breakfast they served me the same thing: orange and apple juice, Jello, and tea. After breakfast they said I was OK to go. No Chemo or Rads are planned.
Ja 2013 tongue, red sore spot, r/r edge + white strip underneath, no pain Al Bx on spot, strip, and vocal cords, lab rep benign Oc 24 Surgeon follow-up, larger Bx req'd Oc 25 Bx bits to Vanc. Cancer lab No 14 MD said more ca investig'n req'd No 19 Prince George CC, MRI & CT No 20 PGCC Oncol says cancer De 2 Vancouver Cancer Centre, PET/CT De 31 VGH partial glossX + ex spot on vocal cords
| | | | Joined: Nov 2013 Posts: 33 "OCF Canuck" Contributing Member (25+ posts) | OP "OCF Canuck" Contributing Member (25+ posts) Joined: Nov 2013 Posts: 33 | I am going to break this up into several posts. For those interested in my procedure, the oncologist who was originally supposed to use the blue light during the surgery was away, so no blue light. All my margins at the surgeon's visual limits. (Sign of cross, fingers and toes crossed, petting rabbit's foot....) As for my future, I will be seeing the MO in Prince George on Jan.15/2014, and my original biopsy surgeon (a colleague of my Vanc. surgeon) on Feb.20/2014.
Hanging over my head is the small spot picked up by the blue light on the R/F of my tongue at the Dec.2/2013 visit to Vancouver. For those interested, this tool is shown on this site in an area called Products/Products for Dentists/VELscope. I am going back and forth with these folks on the use of this technology. They want to use it cautiously, and sparingly, because they say it can yield false positives, gatekeeping as far as I'm concerned. This light shows up early problems not visible to the naked eye under normal light. If someone knows the cost of this device, a post will be welcome. My hope is that if the cost is not too prohibitive, they could become first line screening devices in hospitals where multiple doctors and dentists could have access to them. Of course, if the cost is quite reasonable then distribution could be even more widespread.
Ja 2013 tongue, red sore spot, r/r edge + white strip underneath, no pain Al Bx on spot, strip, and vocal cords, lab rep benign Oc 24 Surgeon follow-up, larger Bx req'd Oc 25 Bx bits to Vanc. Cancer lab No 14 MD said more ca investig'n req'd No 19 Prince George CC, MRI & CT No 20 PGCC Oncol says cancer De 2 Vancouver Cancer Centre, PET/CT De 31 VGH partial glossX + ex spot on vocal cords
| | | | Joined: Nov 2013 Posts: 33 "OCF Canuck" Contributing Member (25+ posts) | OP "OCF Canuck" Contributing Member (25+ posts) Joined: Nov 2013 Posts: 33 | This post is for newbies. I could not have written it when I first introduced myself, because I had no experience. Having been at this for 8 months now I think there are some things that newbies need to know.
First, read the forum in order. This means the entire "New Posters Read This First", then the entire "Frequently Asked Questions", followed by as much of the "Introduce Yourself" as you feel you need.
Second, when you go to introduce yourself, here's a tip. If you are like me and thought you would write your intro in MS Word or some other w/p program, to paste in, then forget it. Save yourself the time and aggravation of having your work disappear. There is something in this forum's system that only allows us to type in the official box.
Third, remember that signature/profile/bio you have been encouraged to write? Do it sooner than later or you get an electronic spanking. Another tip, although you may have noticed that some of the veterans seem to have long bios, we newbies are limited to 500 characters. Not sure why.
After you have done these steps, the stuff in the other forum categories can be informative, encouraging, terrifying or depressing. If you have only just had an initial Rx and you are early, then focus on early stuff.
Ja 2013 tongue, red sore spot, r/r edge + white strip underneath, no pain Al Bx on spot, strip, and vocal cords, lab rep benign Oc 24 Surgeon follow-up, larger Bx req'd Oc 25 Bx bits to Vanc. Cancer lab No 14 MD said more ca investig'n req'd No 19 Prince George CC, MRI & CT No 20 PGCC Oncol says cancer De 2 Vancouver Cancer Centre, PET/CT De 31 VGH partial glossX + ex spot on vocal cords
| | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | It's great to see your surgery went so well and that you have no other treatment to endure.
I mentioned the Velscope to my dentist as a possible tool to be used in future oral cancer screenings and she said she had read about the false positives issue already about it.
And though you haven't mentioned it yet, there is also another new product on the market. I don't know the name of it, but it's basically a soft brush that you whisk over any areas of interest and then send in for biopsy analysis, kind of a quick look tool. My dentist also had little confidence in this new tool, she basically called it a gimmick.
As for 500 character limits in our signatures, I think that applies to everyone, though I haven't counted characters yet on any of the old heads. I expect that is why they use so many 3 letter abbreviations, which I still don't know the meaning of and haven't made the effort to learn either. I want others to know me for more than just all the procedures I've endured.
Glad you're back.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | |
Forums23 Topics18,249 Posts197,140 Members13,323 | Most Online1,788 Jan 23rd, 2025 | | | |