| | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | True, Jim, can you imagine trying to go on a nice relaxing backpacking trip in the Sierra wilderness or somewhere with helicopters circling overhead and secret service behind every tree?
Anyway, my wife and step son have been pretty good through all this but I don't tell them much of anything negative because my wife had a knee replacement surgery that went wrong and so lives in constant pain with that and her son is juvenile diabetic (he's now 40 and has lived with that disease for 33 years) so there's enough negative stuff around here without me adding to it so I just say I'm fine and listen to their problems. So, really, thank you all for letting me whine a little. I'll keep it to a tolerable level.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | David,
Cancer is very scary. We all feel that way, it's so hard. I think talking about it is the best medicine. I remember one day talking to my fiancee..I finally said it. I said "I'm scared I'm going to die" just speaking those words made it so much better. We are all here for each other which is awesome. We all have multiple shoulders to lean on. So whine away!!! Scream, yell...whatever you need to do.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Mar 2009 Posts: 2 Member | | Member
Joined: Mar 2009 Posts: 2 | David:
I agree! It is really tough talking about fears of recurrence. I have found that you have to talk about what you are feeling, otherwise those same thoughts continue to go round and round inside your brain. The more times those thoughts go around, the more intense they become. I think it is normal to question whether or not you would go through treatment again. There is something to say about ignorance being bliss. These treatments are horrible aren't they? As for solutions, they probably vary as much as each of our treatments. I am currently going to group counseling and that seems to help. I have also found great relief just by reading the various posts on this site. Thanks everyone for saying it like it is.
Dx SCC 1/07, Partial glossectomy, Rt neck disection (extra-capsular spread), trach, peg, RT x30, Chemo, TX:1-07 thru 6/07, HBOT x30 1/09
| | | | | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Friends:
Time does change things. During and soon after my treatment, I just assumed that I would probably die in the not too distant future. Then, for a couple of years, everytime I experienced anything unusual...an eye that kept tearing, a little white spot in my mouth, dizziness when I got out of bed too quickly...I got very concerned that it was a sign of a reoccurance and went to the doctor. Fortunately all of these were false alarms, and now, approaching 7 years from my original diagnosis and treatment, I don't really think much about reoccurance, and live my life just like other healthy folks. I plan for old age by saving for my future, thinking about retirement one day, deciding when I should start taking my social security,etc.
Of course I am aware that the other shoe could drop at any time. When I tried to buy some life insurance last year, I was turned down, but heck, at 61 I am older than most of the people that I read about in the obituaries each morning. (I love to read the obits!) I try not to work too hard and to play as much golf as I can...just like a lot of guys my age.
Life goes on, and I think that most of you will find, as I have, that as time passes, things will get better for you, and other thoughts will occupy your mind than just cancer and mortality. It is natural to worry,and we are a population at risk, but life is risky anyway.
Best of luck to you all.
Danny G.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Danny thank you for coming back and not forgetting us. You always had strong posts, valuable insights and compassion. I appreciate you dropping by occasionally to tell us life is good, (it's good for others to hear it) and to offer your perspectives. Don't be such a stranger. This is mostly a board of newbies since you were here, and many of the old timers have been lost to the disease or moved on. Your knowledge and strengths really help. I also heard from Karen Ng in Hong Kong for the first time in ages and she is well, happy, and made a nice donation to OFC. You old timers are the backbone of our reservoir of important experience based knowledge, and I appreciate your occasional return. I get that some have to move on emotionally, or that "LIVING" your new life after cancer has to take precedent. But you were always a good example that any quality life is spent partly in service to others. Good to see you back.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Yes, wonderful to hear from you Danny. I haven't been on as much since my second diagnosis November 2007, have had a few scares since then, currently getting double checked for something in my mouth.
I sometimes feel like my head is in a guillotine (sp?) and get down, but then have to kick myself in the butt and realize I am still here 7 years after first diagnosis, have seen my kids graduate high school and now almost finishing up with college. I have lots to be thankful for. I am always here if anyone wants to write. I was terribly torn up over Minnie's passing and it was hard to get back on. Still am. She was a true fighter! As was Danny Boy, Petey, etc..
I would like to mention that Eva Grayzel is working very hard on her Lehigh Valley Walk for OC May 2nd, if anyone could attend or donate to OCF it would be awesome! Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
| | | | | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Brian and Carol... So nice to hear from you both. Carol, I am so out of touch that I did not even realize that you had a second diagnosis. I am glad that you are doing well. I also got to see my three kids graduate from high school,and the second daughter graduates from college this year, and my baby boy (in Puerto Vallarta for spring break!)is a college sophmore. You guys humble me. I contribute so little to OCF these days and yet recieve kind words and praise from you who do so much for others. Okay, I feel the guilt and just made a donation! Take care, Danny G.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | The donation was not expected, and I wish to personally thank you for your continued financial support. We live on the benevolence of others from month to month. Having said that, you already have done so much to help other people, it was really not necessary.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Mar 2009 Posts: 2 Member | | Member
Joined: Mar 2009 Posts: 2 | I have been monitored for a year and a half by an oral surgeon for dysplasia on the right side of my tongue and gums. My
most recent biopsy showed that I have squamous cell carcinoma on my tongue. I was also told that the doctor did not get all of the cancer and I am going to see the head and neck surgeon tomorrow. I hope that I have early stage tongue cancer that can be treated with surgery and radiation because I am not a candidate for chemotherapy. This is my third kind of cancer and I am angry about the diagnosis and terrified about the side effects of radiation treatment
mermaid forever
new tongue cancer patient
stage unknown at this time
| | | | | 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 | Why are you not a candidate for chemo?
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.
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