#16544 10-28-2004 12:14 PM | Joined: Sep 2004 Posts: 7 Member | OP Member Joined: Sep 2004 Posts: 7 | I had posted this in another area by mistake please allow me to introduce myself...
Hi everyone,
My name is Chris and I'm a 46 year old male.
I had a small area on the floor of my mouth that was giving me a burning sensation on and off for a few months (that I can recall). I had thought it was an irritation from toothpaste or from my hot sauce addiction:) Anyway, to get to the point I started to get concerned since I used to smoke (20 years or so...quit 3 years ago) so I started researching oral cancer and found this site. After scaring the hell out of myself I made an appointment with my Dentist. He had told me that he has only seen 5 cases in his entire career and was willing to bet it wasn't SCC. To be on the safe side he sent me to an oral surgeon for a biopsy on 10/19. I went for my follow up today and got the bad news:( He seemed pretty optimistic that we found it early but I | | |
#16545 10-28-2004 01:28 PM | Joined: May 2004 Posts: 137 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: May 2004 Posts: 137 | Chris, Welcome to the site. Thou i wish you never had to join. I am so sad to read your post. However you have came to the right place. There are so many of us on here to talk to and to help in what ever way we can. You have a long road ahead there is no other way to put it. We will all try to do what we can to help you thru that year. You have every right in the world to be "SCARED". I don't think there is a soul in this world that would not be "SCARED" when the word CANCER is involved. My heart is breaking for your 15 year old son. Life has not be nice to him. That poor little man has a lot to deal with. Make sure you always re-enforce your love for him and keep him up to date so that he doesn't have to worry un-neccessaraly. Don't know if that is spelled right or not. He has already lost his moma, the fear of being left alone must be tearing him up inside. you may need to get him into some counseling just to get his thoughts on the right track. This is what I did with my two kids when I first learned that I had CANCER. They were also young like young son. It helped them a great deal. My heart just hurts for you it really does. I have a few suggestions to make I hope you will at least take them into consideration. Before you start anything--take family pictures, take a picture of you and your fiance. Trust me you will have wished you did. Next eat all the favorite things you love to have----NOW. Say all those things that you never said---say them now. I don't know what all your future holds,,,,these are things that I did for myself before anything got started with me. I thank my stars in HEAVEN above that I did this..You will be in my thoughts and my prayers.....God Bless you , MIss Vicki. | | |
#16546 10-28-2004 03:52 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Chris, It sounds like you have a diligent dentist and oral surgeon and that they have done everything right so far. If they have caught it early then you are already ahead of the battle. If it was not caught early then the battle will be longer and more intense but it CAN BE DONE. There are many late stage survivors on this board. Take someone with you to your appointment if at all possible to take notes. Are you at a hospital with a tumor board?? Make sure you get top notch treatment to get rid of this cancer now. This type of cancer loves to get a second chance and is stronger the second time around. Knocking it out the first time seems to be the key. Congrats on the new baby and enjoy the excitment a new baby can bring. At the same time, pour lots of attention on your son. He must be a confused young man right now. Take care and keep us updated. Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#16547 10-28-2004 05:05 PM | Joined: Jan 2003 Posts: 59 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2003 Posts: 59 | Chris: I was 50 when I was diagnosed with throat cancer. I was diagnosed early with a growth on my epiglottis. It was sized at at 2 but at Stage 1, squamos cell cancer. I am now at 2 and a half years post treatment/survival time. Good Luck!! This forum provided by Brian will be more help and the members are very supportive, they helped me through some long days. | | |
#16548 10-28-2004 05:06 PM | Joined: Jan 2003 Posts: 59 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2003 Posts: 59 | Chris: I was 50 when I was diagnosed with throat cancer. I was diagnosed early with a growth on my epiglottis. It was sized at at 2 but at Stage 1, squamos cell cancer. I am now at 2 and a half years post treatment/survival time. Good Luck!! This forum provided by Brian will be more help and the members are very supportive, they helped me through some long days. | | |
#16549 10-29-2004 03:00 AM | Joined: Oct 2004 Posts: 14 Member | Member Joined: Oct 2004 Posts: 14 | Hi Chris, I think you're in the right place for support and help. I've found everyone here very helpful.
My son was 13 when his father passed away. I am sure that his mother's passing was difficult at best, especailly in light of having to change households and living arrangements. I also assume that this is and was difficult for you and your fiance; after all, she was the mother of your child; that bond is never broken. You will soon have the same bond with your fiance (congratulations!).
I'd like to suggest that you find a children's bereavement group in your area. I see your from New Jersey, so I did a general search and found many in the state. We were lucky to be living in a major metropolitan area at that time (since moved) and found a wonderful organization. They were mostly a children's bereavement group, but also support adults. The children were grouped by age and there were children there who had lost parents, grandparents, siblings, friends, etc in all different ways. I think that this helped the kids to see that even though there were different circumstances, that they could all help each other. My son was very reluctant to go at first, but later insisted that we keep going and he will tell you that he misses that group today. When he was in group, the adults went to their own group - they were usually broken down by spouse loss, parent loss, child loss, suicide loss, etc. Our organization was free, but did request that clients donate $50 if possible per 12 week session. There also groups out there for people with cancer and their families. This could also be beneficial. My son found the most benefit from the group discussion. He did have some private counseling sessions to work through a few things also.
Sorry for the long post, but I read your post and it broke my heart. I can partially understand. Please, reach out and accept help for you and your family. It's not a sign of weakness, but a sign of strength.
Prayers for all of you, Kat | | |
#16550 10-29-2004 05:54 AM | Joined: May 2004 Posts: 218 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2004 Posts: 218 | Chris,
Sucks doesnt it. Here's the good new though. You caught it early, you have no lymph nodes infected or distant mets. You are in the 90% range my friend. Get your ass to Sloan Kettering NOW. Dont let anyone tell you any different. You need to go to a comprehensive cancer care center. Sloan is closest to you and one of the finest in the country. Also, Beth Isreal (spelling) is very good.
Like I said dont let anyone talk you into the "community general" thing. They suck! One of the biggest things I got out of this nightmere is how truly fragmented medicine is in the U.S. The proven protocols have not trickled down to the community hospitals yet. Very few even acknowlege them as a viable option. You need to do this for your 15yo and your unborn child. We found out my wife was pregnent 1 week before I was diagnosed.
Use that information to make you strong. That is the reason you are going to do the right thing and get proper care. If you need anything, anything at all drop me a line. I was 41 at diagnosis.
Later, Robert Hamilton
SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04. 41 Years Old At Diagnosis
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#16551 10-29-2004 06:00 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Chris,
Welcome to the neighborhood...the club nobody wants to join. My heart breaks for your son. As others suggest, find him whatever he needs to first process his tremendous loss and to help him prepare to deal with the loss of the life he is just starting to try to establish with you and your fiance.
I am sorry you are having to deal with this, too. Just remember, there are many that have traveled the road ahead and many that have and will continue to live in spite of this horrible disease. It hasn't been suggested yet but try to find a Comprehensive Cancer Center from the links on this site. Throw everything you can now to beat the beast and you will reap the benefits.
I will be praying especially hard for your son as well as you and your fiance. Take the time to enjoy the little things in life and the new life that is coming into this world because of you. I am hoping for the best for you and your family.
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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#16552 10-29-2004 06:27 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Hello Chris You have found us early, now..listen to what these guys are telling you, they have been there, done that. Concentrate on all the positives you have in your life...a new baby ..WOW. You are hereby added to our Good Vibe/ positive thoughts/prayer list. Keep in touch, let us know how you are doing.
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#16553 10-29-2004 04:28 PM | Joined: Apr 2004 Posts: 44 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2004 Posts: 44 | Chris- Welcome to Hotel California. I'm relieved you found OCF when you did. You're in the best place ever to help you as you (and your family) adapt to your new normal. Please be sure you invite your fiance, too. It's a scary time but you must be diligent and consistent. In whatever way you can - tell the ugly cancer beast it's not welcome in your body/home and it WILL NOT be allowed to take hold. Do not let it rule your life (easy to say and you'll need constant reminders to keep you focused)! I realize the shock hasn't even worn off but regroup, gather your armour (and that includes us) to fight the battle. Gather information to formulate a strategy, develop your plan and get to it. We're with you ALL the way! Last July, my husband Ed/Uptown was diagnosed. Talk about a huge slap in the face. All he had were a few swollen lymph nodes! No one ever really thinks it could be CANCER (okay, I never really thought...)! His sons were out of state visiting their birth mother and our youngest was only JUST coming to live with us - our oldest was already here for two years. The day they flew home/here, we had our first appointment with the medical oncologist. When we went all we had a path report that said it was SCC, metastatic - primary unknown! We had to tell them Ed had cancer but we had no answers or prognosis. We didn't even have a scan scheduled yet to help identify where it originated or the knowledge that he may (and did) lose all his posterior teeth "just in case" radiation was too rough? Yeah, we empathize so much with you! I promise you, you will be loved here (unconditionally) even when you feel your most unloveable. God put all of us here for each other and though you're new to the neighborhood - you ain't seen nothing 'til you've see the power of our collective good thoughts and prayer. Gather and identify folks willing and able to tag team to help. It's okay to ask or accept when all they want to do is help. If you have family living all over the place - let them keep in touch with your progress. Create a spot for yourself on caringbridge.org - it's free and good therapy for you/your caregivers to feel good about letting you rest while still letting you know how important you are to them! Susan (Caregiver to other half, Uptown/Ed, cancer free and out of treatment since October 8, 2003!!!!  )
Caregiver to Uptown/Ed, SCC Stage IV, Base of tongue - Completed Chemo (Cisplatnin/5FU) and 45 days' simultaneous Radiation 10/08/03
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