#86896 12-29-2008 03:42 PM | Joined: Dec 2008 Posts: 8 Member | OP  Member
Joined: Dec 2008 Posts: 8 | Hi there, I'm Tamara. I was diagnosed with SCC(T2 N1) on 29 Oct 08. I went into hospital in Sydney on 10 Nov for a partial glossectomy, neck dissection and tracheostomy. My first flap failed and died (which I hear is pretty rear) so both my forearms have wrist to elbow scars. I've just had my 30th birthday, and this has all come as a tremendous shock for me. I've never smoked and hardly drink, so my Doctors suggested HPV might be the culprit, through this has not been confirmed. My Doctors are not recommending radiation for the moment, because of my age and the associated risks of radiation related cancer later in life...but this may be on the table in the future. I feel like I'm on the other side of the mountain for the moment, but am trying to adjust to living with this and figuring out where I go from here. It's really great to have found this forum. Tamara
Diagnised 29th Oct 08 (29 years old): SCC, T2N1 - partial glossectomy (25%); flap construction (twice - first one died); neck dissection 8 nodes removed, 1 node positive; trache - 14 days, partially collapsed lung. No radiation at this time.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Hello Tamara,
Welcome to OCF where you'll meet a lot of good people with great answers due to experience. My GF's friends live in New Zealand but will be moving to Italy after they leave the States in January. I'm sorry that you had to find us though...
I have a couple of questions, was the cancer base of tongue(BOT) and were you treated at a Cancer Center in Sydney?
Yes..I didn't fit the profile either and I'm always amazed about the numbers of young people on this site that also don't fit the profile.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Hi Tamara,
Sorry you have had to deal with this horrid disease, you have certainly found a forum where there are many people who understand exactly what you are going through and will be able to help you with any questions you have or support that you may need.
Have you had more than one opinion regarding the need for radiation. If you haven't I would suggest that you go and get some more. I just don't understand why your doctor would not recommend radiation for the moment.
There are many other people your age who have had radiotherapy. I would question why they are not prepared to destroy it with everything now. Radiotherapy cleans up and kills any bits that may have been left after the tumour has been removed.
In my opinion getting another couple of opinions would be a very good idea.
Karen
Last edited by Karen Rose; 12-29-2008 06:43 PM. Reason: typo
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Yes tamara, listen to what Karen is saying. This stuff can coma back in a lot less time than you can imagin, go work that Drs mind over a little. I didn't have rads or chemo the day in Aug but ended up with Oc back and had to have rads and chemo plus implants in my tongue and minus my teeth. This was for the implants.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | 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 | Tamara:
Welcome to OCF. You will find lots of support and answers to your questions by those who have been thru this already. You are lucky not to have had radiation, it can be pretty hard on you. Luckily being young helps make it easier to heal after treatments. Did you have a second opinion? Did you only have surgery, or did you have chemo too?
After you have gotten oral cancer, the cause isnt important. At least not to me it didnt matter, I just wanted to get well. Healing can be a long process with setbacks along the way. Dont let that discourage you. Hope you heal quickly and have a 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 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Radiation is not always effective -- In my case I had partial glossectomies followed by XRT radiation (not that wimpy IMRT stuf) of my head and neck, but two years later, I had a tumor inside my mobile tongue and six months after that I have a BOT tumor -- These areas were thoroughly shotgunned with radiation, but I've grown new cancer since -- The Docs are surprised.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hey folks, lets not scare our new guest, we don't know what her doctor knows!
Tamara, Welcome. Since we all have a bit of passion about this disease, there are times when we might come across a little bit agressively. Please know that we will offer suggestions that you might consider based upon our observations of many many members here.
Congratulations on completing the first (and hopefully last) step to a cure for this. If you read through the forums here you'll find that perhaps the most difficult spot to be in is exactly where you are. Your cancer seems to have been caught early and that is good. The hard part is that you get a decision with regard to radiation (many of us did not have a choice). Radiation therapy is mean nasty stuff that I would not want to push anyone to get without a good reason. THE REALLY HARD PART is knowing when you should be saying yes to getting radiation therapy. You need very good input from the best resources you are able to get. (which you may already be getting) Even then you may feel like it is still a gamble.
To be sure, you may already be cured. This cancer, however, is one that likes to return if not fully treated. If it does return, often it is harder to treat. This is what everyone here is concerned about; that you stay amongst the rank of winners against this disease.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | | 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 | Are you planning on having your slides 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: Dec 2008 Posts: 8 Member | | OP Member
Joined: Dec 2008 Posts: 8 | Hi Everyone, Thanks for the inputs and advice. Having or not having radiation is definitely a tough issue for me at the moment. The oncologist said that in my case, the risks of radiation would outweigh what would only be a very nominal gain. My ENT specialist concurred with this opinion. I've not had a second oncologist opinion on this, so as a first step I'll definitely seek additional advice and weigh these up to make a final decision. If my slides were tested for HPV I havn't been notified of the results. I'll definitely follow up on this too. Everything has happened so quickly since my diagnosis (Oct 29th) so I'm still very much in the research and learning phase. Thanks again, Tamara
Diagnised 29th Oct 08 (29 years old): SCC, T2N1 - partial glossectomy (25%); flap construction (twice - first one died); neck dissection 8 nodes removed, 1 node positive; trache - 14 days, partially collapsed lung. No radiation at this time.
| | | | | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Tamara, please do get that third opinion. I do not recall any other person here with lymph node involvement (N1) that radiation wasn't recomended.
Take care
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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