| | Joined: Oct 2010 Posts: 4 Member | OP  Member
Joined: Oct 2010 Posts: 4 | Just introducing myself. Dave - 29yo. Only last week found out my cancer had returned. Going through a rough patch right now. I got married June 09 after recovering from the first cancer. Greatest day of my life. Thought i was past it but as we all know, its a sneaky bugger and it snuck back up on me. I previously had a stage 1-2 SCC on the left BOT. I was diagnosed on the 7/4/08. Surgery on the 7/20/08 and PEG in place for a couple of weeks with a piece of my forearm used to replace. (Forearm radial is it? Can't quite remember) Went through radiation but no chemo. Nearly two years to the day i finished radiation i noticed a lump on my tongue that has since been revealed as a stage 1-2 SCC. Possibly a different one as this one is well differentialed and the last one was poorly. Right now I am waiting for surgery which will occur on monday. Same process as before. I really wanted to post to say thankyou to the absolutely inspirational people on this forum that have lifted my spirits. I am the only person i know who has gone through this type of cancer and surgery and to find others is fantastic. I will endeavour to post here as often as i can. Surgery will probably remove most of what's left of my tongue but i figure its a very very small price to pay. I'll update my sig once i figure out the abbreviations etc.  Cheers and thanks for reading, Dave | | | | | Joined: Sep 2009 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 126 | We will be praying for successful surgery and a speedy recovery. Will you have to have Chemo this time?
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Dave,
Just read your post and want you to know I will say a prayer for you and hope everything turns out okay. By reading the other posts on this forum, you know you are not alone. Cancer sucks, especially oral cancer, where it leaves it's ugly mark on us to the point of not even being able to eat and some not even being able to talk. Please keep in touch with us. I pray that your surgery and treatment will be a success.
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: 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 | Dave, welcome to OCF. You will find several Australian members. Wishing you the very best of luck with your upcoming surgery.
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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Hi and welcome from a fellow Aussie Dave, As Christine says there a quite a few of us here. Is your hospital in Brisbane? I am so sorry to hear that you are going through this for the 2nd time. As you can see by my signature I had much the same as your first operation. The very best of luck with the upcoming surgery on Monday. I searched on abbreviations and found a list that Mark a Patient Advocate (1000+ posts) had posted a while ago. It is a very comprehensive list. Please post again if you have questions before surgery and after. Cheers Gabriele Abbreviations and definitions for common terms. We all use abbreviations here and new-comers sometimes have a hard time understanding them. SCC - Squamous Cell Carcinoma Dx - Diagnosis Rx - Prescription Tx - Therapy? Treatment? BOT - Base of tongue PEG - Percutaneous Endoscopic Gastrostomy aka feeding tube http://www.oralcancerfoundation.org/dental/tube_feeding.htm HPV - Human papillomavirus rad - radiation ENT - Ear, nose, throat Doctor aka Otolaryngologist Glossectomy - Removal of tongue Metastasis - Spreading of the cancer XRT - Conventional external beam radiation therapy aka EBT IMRT - Intensity modulated radiation therapy http://www.oralcancerfoundation.org/facts/imrt_radiation.htm PET - Positron emission tomography scan CT/CAT - Co-axial tomography scan EBT - External beam radiation therapy aka XRT OCF - Oral Cancer Foundation NCI - National Cancer Institute, a sub division of the National Institutes of Health CCC - Comprehensive cancer center or clinic; A tumor board at a cancer center will include doctors trained in different disciplines. Having your case presented and evaluated by this type of multidisciplinary team will give you the best options for treatment, considering all possibilities from their different areas of expertise. HBO - Hyper-baric oxygen Patient given oxygen under pressure prior to dental surgery. Stage - Development of the cancer http://www.oralcancerfoundation.org/facts/stages_cancer.htm TNM - System for describing the cancer http://www.oralcancerfoundation.org/facts/stages_cancer.htm NCCN - National Comprehensive Cancer Network (an alliance of 20 leading comprehensive cancer centers). http://www.oralcancerfoundation.org/treatment/pdf/head-and-neck.pdf Margins - Refers to the margins of biopsied tissue; clean margins indicate that all the visible cancerous cells were removed. Biopsy - Removal of sample or whole of suspect tissue http://www.oralcancerfoundation.org/facts/detailed_biopsy.htm Xerostomia - Dry mouth resulting from reduced or absent saliva flow RO - Radiological oncologist MO - Medical oncologist DO - Dental oncologist
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Oct 2010 Posts: 4 Member | | OP Member
Joined: Oct 2010 Posts: 4 | [quote=wheels]We will be praying for successful surgery and a speedy recovery. Will you have to have Chemo this time? [/quote]
Sharon, my doctors say that chemo is often done in conjunction with radiation. I have radiation before and apparently its rare for it to occur for a second time in the same area on the body. They're going to have a look at the tumour once removed and make a decision around then.
At least it hasn't spread. Docs are saying they're pretty sure it hasn't gone to the lymph nodes but they are going to remove them and check anyway. Pretty much like last time
To Gabe, yes, I'm in Brisbane Private hospital. I'm fortunate to have my wife and all my family in Brisbane.
Thanks again for reading,
Last edited by David P; 10-12-2010 10:19 PM.
| | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | Hi David Alex and I are in Sydney and wish you the best of luck for your upcoming surgery. This is a great site for exploring options and figuring out the questions BEFORE you get in front of the doctor rather than 3am the next morning. Support is excellent too from both survivors and co-survivors. Alex had slightly left of standard treatment because his tumours were unresectable. We had "induction" chemotherapy which just means they used chemo as a means of shrinking the tumour before they rolled out the big guns. Chemoradiation (the big guns) followed 4 weeks later. We were lucky that the result of the chemo was actually a "complete response" (no evidence of tumour on PET scan) so with any luck, the chemoradiation pulverised any errant microscopic remnants. We look forward to stressing about whether or not our superannuation will save us from selling the house and moving into the gutter with our other poorly prepared friends Karen
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Dave, You say the 1st time it was BOT primary but you said you had surgery. What surgery was done for BOT primary? If they are not sure about a nodal involvement why are they going to do a ND? Did they radiate that area the 1st time? Were your slides ever tested for HPV?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | 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 | Chemo alone is not a cure for this type of cancer. You are correct in knowing it is given with radiation. There are a couple people here who have gone thru radiation twice.
Gabe...Excellent post!!!!! You really got a ton of important info compiled into one post.
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: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Dave, my thoughts are with you. Sounds as if you have a good team in place, both medically and personally.
We're all pulling for you!
David 2
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
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