| | Joined: Jun 2011 Posts: 4 Member | OP  Member
Joined: Jun 2011 Posts: 4 | i dont know what stage my cancer is at yet, but will find out on the 24th June, i had my first dissection on 7th April found lymph node had cancer was diagnosed on 5th May with unknown primary, then had huge dissection on 26th May, they took out 39 lymph nodes and my tonsil,i still cant swallow food, i then found out i had Tonsil cancer, i have radiotherapy on the 27th June for 4 weeks every day apart from weekend, and chemotherapy once a week for whole day, for 4 weeks also, i feel totaly alone on this, i looked up every website to find out about tonsil cancer and was horrified to see 5 year survival rate, is this correct, i have 7 year old daughter and want to be around for long time, i am usualy very strong person but this is getting to me i dont know anyone else with tonsil cancer, so if there is anyone out there that could give me any information that would be great thank you.
First dissection one node out was cancer, second dissection 39 nodes out two had cancer, tonsil cancer taken out.
| | | | | 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 | Welcome to OCF, Helen! You are no longer alone. OCF members will help you with everything! I know there are alot of things online to read but please, do yourself a big favor and dont panic. Especially about statisitics. It does not mean you are going to be one of the statistics. Please do yourself a favor and ignore the stats. Im one who beat the odds, Ive had OC 3 times and Im still here.
At this time you should have lots of friends and family around asking what you need. Im sure you will have many offers for helpers. Make sure you let them know when the time comes you will call them and write down every single person's name and number on a list. You may need some help down the road.
I know you mentioned that you are unable to eat. Try your very best to get something down. Even a sip of water, that is if you are allowed. Have you had a swallowing test yet? Did your doc ok you to eat? If you are allowed to and able to then try your best to eat as your sense of taste will change for a while when you go thru radiation.
Wishing you well!!!!
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 2011 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | | "OCF Down Under" Supporting Member (50+ posts)
Joined: Jan 2011 Posts: 63 | Hi Helen
Welcome to OCF..like Christine has mentioned, this site is a wealth of information and you will recieve so much support from its members. I like Christine have had OC 3 times...mine came back in a matter of months. I am still undergoing treatment and like you feel the fear and anxiety that comes with having cancer. However, I really couldn't have come this far without the help, support and encouragement of the people on this site. I used to always look at statistics but the things I have learnt on this journey is that we are all individuals and statistics are just a ball park figure.
I personally know a few people who have had tonsil cancer and they are doing very well after treatment. So, please hang in there but allow yourself to go with the flow of emotions. Having cancer is not an easy road...it's ok to cry, worry and feel afraid. But, reach out to people for support and help and believe me, it feels like your burden is halved when you do that.Joining this site was the best thing I ever did..I have made so many friends who understand what I am going through.
I wish you all the very best with your treatment...keep positive and be kind to yourself xx
SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
| | | | | 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. Please as the others have said don't believe the statistics! They are a lump sum that don't take into account many things - stage of the disease, agressiveness, health of the individual... You are an individual not a number. Do what you can to fight it - treat this cancer aggressively. There are other here who've come through it - you can too. Take care.
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 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 | Helen, Please read about HPV as it may apply to you. Your cancer cells can be tested for HPV. Your 4 weeks of rad and chemo are unusual as just about 100% in your situation get 7 weeks.
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 2011 Posts: 4 Member | | OP Member
Joined: Jun 2011 Posts: 4 | thank you Christine i am still trying to work out how to reply to people, i was very worried after reading 5 year survival rate but i see some people on here live way much longer than that so that is good to see, i cant swallow food as they took out my tonsil i am eating porrage and potatoes mashed so not to bad though have no taste at all.
First dissection one node out was cancer, second dissection 39 nodes out two had cancer, tonsil cancer taken out.
| | | | | Joined: Jun 2011 Posts: 4 Member | | OP Member
Joined: Jun 2011 Posts: 4 | i have read about the HPV but im bit confused as to what that is. i do hope the four weeks will be enough for me then if the usual is 7 weeks, im in Scotland so maby do things different here i dont know.
First dissection one node out was cancer, second dissection 39 nodes out two had cancer, tonsil cancer taken out.
| | | | | Joined: Jun 2011 Posts: 4 Member | | OP Member
Joined: Jun 2011 Posts: 4 | Thank you Lizzy for being so kind and writing to me everyone in fact thank you, i think everything just moved so fast from diagnoses to surgery and now to therapy soon 27th June but i can see this is a good website and people know what im talking about as you have all been there its all rathernew to me since i was diagnosed 5th May but i will stay strong
First dissection one node out was cancer, second dissection 39 nodes out two had cancer, tonsil cancer taken out.
| | | | | 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 | The typical rad Tx involves appx 70 gys of radiation and it is usually broken up into an avg of 2 gys a day, therefore 2 divided into 70 equals 35 days, 5 days a week or 7 weeks. Some double up on each Friday which then cuts the 7 weeks to 6 but that's the fastest I've seen and no I doubt they do things that different in Scotland. What's your confusion re 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: Jul 2010 Posts: 60 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 60 | Hello, Helen,
I had tonsil cancer/diagnosed last June/had radiation (7 weeks) and chemo at Johns Hopkins. The treatment is manageable/surround yourself with as positive people as you can/it makes a difference.
It's good to know there are lots of other people in your shoes/many 10 year plus survivors. You can get through this!
Susan/59/nonsmoker /tonsil cancer spread to tongue,stage III diagnosed 6/10, HPV+ T3,N1 Finished 35 radiation and 7 cisplatin 9/7/10.
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