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#143673 12-06-2011 02:01 PM
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I was diagnosed with Stage 3 Tongue cancer (which later was diagnosed as metastatic)10 days after my 34th birthday. That year I had 4 subsequent surgeries, a partial glossectomy and 3 neck dissections, after which time, they decided to treat me with chemotherapy and radiation after all. I went through 6 weeks of radiation and chemotherapy (Cisplatin). I also received Amifostine injections before each radiation treatment, and I believe that may have protected some of the radiated tissue as almost all of my taste sensations returned to me, although it changed a little...that was this time 4 years ago. I am now plagued with recurrence worry. You read about people who are almost to that 5 year marker when they are hit with the next wave. To think that I will never be "in the clear" upsets me. What are the typical warning symptoms of recurrence? What am I looking for? Any information would be a great help. A single woman, no children, no immediate family in my vicinity... sometimes I feel alone and frightened.

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Michele - I'm so sorry to read about your worry and hope that it proves unfounded. I'm sure others with recurrence experience will be weighing in with excellent opinions.

It sounds as though your anxiety is beginning to get the better of you. And the fact that you're alone doesn't help. If you are having actual physical symptoms (and believe me, I'm a huge worrier so I know how you're feeling) you should try and describe them so people will be better informed.

Think of this forum as a place where you can come whenever you need to, ask any questions, rant to your heart's content... and we'll all understand and support you.

My thoughts are with you.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
David2 #143679 12-06-2011 04:30 PM
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Michele,

You can always ask your doctor for a follow up PET scan. I would think your insurance would pick it up. The peace of mind it will afford you could be pricleless.

Best of luck.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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I totally agree - ask for a scan- I understand your nervousness. I'm 7 mos out of radiation today - 9 mos out of surgery... Sometimes it's hard not to think about recurrence - but congrats on being 4 years out. That's awesome. Hopefully your fears are rooted in nervousness about the 5 yr mark and you have no further symptoms!!! You've been through a lot. Recurrence at 5 years is very rare. Hugs and try not to freak. We're here if you need it...


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
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Hi Michele. Welcome to OCF. Congrats on being 4 years post treatment. You are no longer alone, you have found a huge resource with the OCF forum. We are an extended family to many survivors and caregivers.

I understand your concern about having a recurrence. After what you have been thru its very scary to consider being sick again. The symptoms of a recurrence are the same as what you would experience when getting sick the first time. Some people get an ear ache, sore throat or an unhealing sore. I am not one who likes to pay attention to statistics. Every year you are cancer free the odds go down for getting a recurrence.

If you are continually focusing on worrying about your mortality it might benefit you to speak to a professional. Many cancer patients will seek out therapists to help them get past these feelings. Maybe finding this forum can help you to realize how fortunate you are an help you to get past your concerns. Do your best to live for one day at a time.

I have gone thru oral cancer 3 times. Every time I got well I ended up being sick again. It seemed like a never ending battle, 3 times in 3 years was too much. I was always terrified about recurrences, so much so that I wouldnt even read the recurrence posts. I had a silly fear it would somehow make me get sick again. I have learned to live in the present and to not overthink my future. I cant worry about being sick. The 3rd time I went for a biopsy I had never felt better, no symptoms. The day before I was diagnosed I went on a 25 mile bike ride with my son. I could not believe it when my doc told me I had cancer again. The whole time I waited to have my mandibulectomy, I lived for the moment. I did everything to make memories with my children. The 3rd round taught me not to waste one precious moment worrying about something you cant control. I am very very lucky to be alive and I have learned to appreciate so much. Sure I have some problems with different after effects but they are not anything too debilitating.

Wish I had some way to help you to see how fortunate you are. I hope you can find some contentment and appreciate being cancer free for 4 years.


Christine
SCC 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 smile
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Michele - You have really come to the right place to be with people who can feel what you are going through. Worrying can be a crazy-maker and the stress can lead to physical symptoms. I worried so much over my son's cancer I began to get some of his symptoms, too! It helps if you find something physical to do even if it's just bending down and touching your toes to start with. And then moving on to whatever other physical activity you enjoy - maybe developing a new interest in something, learning a new skill, planning a trip? When the "what ifs" bring on negative thoughts, try to just give them a time limit and then switch to some of the positives like being cancer-free for 4 years and your taste sensations coming back and other improvements you've noticed. Talk to your doctor about how you are feeling - he might be able to recommend something that would help. You can get through this, and you can choose how you react to stuff - it just takes practice. Do come back here often and let us know how you are doing.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Michele,

What are your symptoms that you are worried about?

Definitely get with your cancer docs if whatever you are worrying about persists for longer than 2 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.

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