#33409 05-07-2004 06:42 AM | Joined: May 2004 Posts: 218 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: May 2004 Posts: 218 | Hi,
I must admit the fear of recurrence is driving me crazy. I read all the older posts that say not to worry every day is a gift but it is really hard. Especially after reading that as a former smoker I am on the wrong side of the curve statistically.
I am a 41yo male.
I was tonsil T1N2A .6cm primary tumor (right tonsil). One lymph node 3cm on the money. So I guess I could be T1N1A but it appears that statistically there is no difference. And I was treated as T1N2A.
I feel that I received the best possible treatment at the University of Chicago. Induction Chemo followed by Chemo/Rad completed 2/14/04.
But I find myself calling my doctors at the drop of a hat. Every time something appears even a little different. I developed a cold this week and it completely sent me into a tailspin. It's really all I can think about. I wish I could just put it behind me and carry on until the next occurrence (or not) but I cant. I just cant. Anyone have the same problem?
Robert
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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#33410 05-07-2004 06:57 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 | Robert,
Welcome to the club nobody wants to join. I feel safe answering for others to the question you are posing. ABSOLUTELY YES, we all have exactly the same problem as you. As time goes by, you will force yourself to look at your tongue in the mirror maybe once a week or every now and then versus 50 times a day at first. You will stop feeling all the aches and pains in your neck and thinking everything feels like a new lump. The days leading up to every doctor visit will be extremely stressful and most likely you will not sleep the night before.
The good news is, you have found a place where there are many, many just like you and the most caring bunch of folks you have ever run across!
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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#33411 05-07-2004 06:59 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Robert-
I think we all have the same problem!! When you hear the word cancer it sends everyone into a tailspin. The fear is pretty hard to overcome. This is when it really helps to have a support group, a prayer group, even a group of people you've never met but have traveled the same road you are on! It's tough and it sucks. I'm 20 months from treatment and let me tell you the fear does slowly diminish with every day!! When you see those statistics remember that new treatments come every day and most of those stats are very old! So stay positive and when it gets rough we'll give you a pep talk! Many prayers are headed your way!!! - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#33412 05-07-2004 07:06 AM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Dec 2003 Posts: 116 | Robert
As the others of said support groups help, time will help and I approach it like before I had cancer. I never expected to get this, I feel I and the doctors did everything they could to kill it. In my case the statistics are very good so I am thankfull for everyday and I won't dwell on it because we can never guess our fate!
SCC R-Tonsil T2 NO MO Dec 2003. Completed IMRT Radiation only to tonsils(72Gy) and neck(55Gy)March 04. Detected at age 50.
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#33413 05-07-2004 07:18 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | Hey Robert. I can completely relate. The first couple-three months post treatment I was sure it was coming back. I'm about 5 1/2 months post-treatment now and the fears have subsided enough that they don't dominate my every waking moment. Hopefully the further out from treatment you get, you'll catch yourself not thinking about being sick or it coming back. This should happen more and more as you begin to pick your life back up. I don't really think about it much anymore even thought I still have pain off and on, here and there around my mouth and such. The doc says he's only interested in pain that lasts longer than two weeks.
Try to remember that whether you worry about it or not, it's beyond your control if it reoccurrs or not. Try and allow yourself to relax and enjoy the fact that you're done with treatment. Hang in there, it does get better.
-Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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#33414 05-07-2004 08:19 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Robert,
Even those of us who didn't smoke, feel the same way as you. Don't worry about the statistics too much, as an accountant statistics are just numbers and you are not just a number. You have a good chance of beating this.
Also don't worry about calling your doctor too much. That's what they get paid for. You deserve the best treatment possible and if that means they have to calm some fears now and then so be it.
I praying for a speedy recovery and life after surgery to be meaningful and rewarding.
Lynn
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
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#33415 05-07-2004 01:54 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Robert,
I so know where you are coming from! Every time Dan has any kind of pain, I immediately think cancer is back again. It's so hard sometimes not to think and worry all day. Having God and a great support system has helped alot, but late at nite or not so busy times, it is hard not to try and predict the future!!
Hang in there...you are not alone, and I will be glad as months pass and I (we) don't think about it constantly!
Take care,
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#33416 05-07-2004 02:21 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hi Robert,
I went through the same emotions you are feeling now. It is normal. In time that fear will subside and you will know that your old life is just that. Your old life!! I can only speak from my experience and interaction with forum members who traveled the path ahead of me. There are so many supportive, educated members that you can tap for information. And Guess What!! It's all free.
I have accepted my life and whatever happens will happen, I can control somethings such as diet, exercise and generally taking good care of my body. That's it.
My new life isn't all that rosie but it's what I have. I always try and look at the good things and it seems to help. Good Luck on your healing phase and I wish you nothing but the best.
Dan Bogan
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#33417 05-07-2004 02:33 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Robert,
Yes, this illness can make you extremely suspicious of symptoms - of just about anything (especially if you start out with doctors who treat your oral symptoms as nothing to worry about).
Fortunately, after I completed my treatment, my oncologist became my primary care physician, and year after year, he keeps telling me to call him about any symptom -- anywhere -- that is a concern. Because he knows my history well, he has a great perspective on things and sometimes even when I think it's nothing to be concerned about he orders a test or two because he wants some peace of mind.
Just keep asking questions and staying informed -- I'm convinced that's going to be a major factor in improving the survival rates for this illness.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#33418 05-07-2004 10:49 PM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 143 | Robert, you sound just like most of us feel......Frank would go for a checkup and we`ed have a couple good months, then checkup time would come around again, along with tailspin time again......Frank handled checkup time better than I did. Every morning when he got up, I`d worry about what I might see new. He complained to our shrink that I hovered too much ! We all have the same fears with this stuff, so just unload here, we`ve all been there,done that........Welcome Aboard......Hugs, Dee | | |
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