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#176433 01-13-2014 07:58 PM
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las3645 Offline OP
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WARNING: Long 8 month vent release.

Did this all really happen? Tell my brain to turn it off.

I just need to put this out in the universe. I had a very quick, fortunate experience with cancer. I am struggling with the whole did this all really happen. Within one month I was diagnosed with cancer, had surgery, and then I was free of cancer. Friends have forgotten that this even happened, but it is always on my brain.

I feel that I am blowing it out of proportion, I didn't have chemo or radiation, but does that make it less real? I live in fear everyday that it is coming back. I sometimes feel that the doctors must have gotten it wrong because it makes NO SENSE that I got tongue cancer.

I also feel that I don't have the right to worry since it was such an "insignificant" event and so many others have it so much worse than me. Who am I to complain? I am so fortunate. I found, they fixed, all done, end of story. I have cried maybe twice from this whole ordeal. But yet, is it the end of the story?

I have been cancer free for 8 months and during those 8 months I have had 3 biopsies, 3 ultrasounds of my neck and a CT, plus monthly doctor appointments. Everything keeps coming back negative(YAY), but it keeps this at the front of by brain! And every ache in my mouth and sore is just like reliving it all over again.

Every time I talk, every time I eat, every time I sing (i love to sing one of my favorite things to do) and do other random tasks I am reminded. That I am the same and yet somehow I am different.

As a Christian, these fears weigh heavily me. Feeling that I am not fully relying on God and that I should be more grateful. Which I am extremely grateful, I just don't know how to give up these fears and anxieties. I keep my self occupied because I work full-time, I have a 2 year-old son, and a wonderful husband. But I feel there are reminders everywhere. DOES IT EVER FULLY GO AWAY? How do I turn off my brain?

Thanks friends. I don't know who to talk about it, or who would understand. Just caught in an awkward place, and wondering if this is my new normal.


Lori, age 30 (HPV-, non-drinker, non-smoker, non-tobacoo user)
Dx 3/18/13 - T1N0M0 SCC L.Tongue
Tx 4/4/13 - Partial glossectomy (no rad/no chemo).
8/8/13 - Thyroid FNA - benign nodule
12/20/13 - Tongue Biopsy - Mild hyperkeratotic dysplasia
12/26/13 - Lymph FNA - benign (dx Cervical lymphadenopathy)
3/17/14 - Tongue Biopsy - normal tissue
5/5/14 - Tongue Biopsy - (awaiting results)
Joined: May 2013
Posts: 134
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First off, NOT insignificant. Cancer is cancer. There is an enormous spectrum of possibilities post-Tx. I am so happy that yours went the way it did.

Second, as a Christian you know that this life isn't all there is. The Lord and He alone knows the number of our days. It is a finite number and I have tried to reduce or eliminate the number of them spent worrying about anything. I stumble frequently but the goal is always to recognize I'm worrying, hand it back to Him and get on with what's left. Take the energy spent worrying and tell the people you love how much you love them, go see a play, do stuff you used to say you didn't have enough time to do. Make the time to do them! I believe stress played a large part in "switching on" my cancer 2 years ago. For the life of me I can't remember even one job I was working on that was so stinking important then.

I'm sure the rest of my life a sore throat will make my mind wander. My job is to allow it 10-15 seconds and move on.


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
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Lori,
this is part of the "new normal" thing mentioned often around here. Living in fear and anxiety is part of what cancer does to your mind for quite a while and you will never totally escape it, but like a bad relationship, you will eventually give it less thought time. It's like Pauls thorn, to put it in a Christian perspective. (II Cor. 12-7).

Do keep all of your appointments, recommended scans and tests. If you are cancer free after 2 years than things should start to get better, emotionally, for you.

Tongue cancer in non smokers/drinkers is rare but it does happen and with HPV becoming so prevalent it is becoming all too common. Today, if you were born before 1965 then there was an 80% probability that alcohol/tobacco products were involved. If you were born after 1965, there is an 80% probability that HPV is involved. It is estimated that 80% of the population has HPV today but not all of these will develop cancer. (if I was wrong about the year please correct me)


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Lori,

As the old saying goes, time heals all wounds. Trust me what you feel and fear today will diminish over time even though you will never forget. All of us experienced the "why me" and "what now" concerns post Tx and the majority just accepts it over time and we move forward. Some of us need professional intervention which is always an option. Perhaps give it some more time and try not to dwell on the past and if you need help then seek out these professionals who are licensed and trained to help you.


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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Fear does diminish over time. I too had no precursors for this disease. Hopefully they got it all and yes with most oral cancers the treatment thankfully isn't the long drawn out treatment of many other cancers but it can be just as life changing.

What I am about to say is just a heads up.

I tested cancer free in the nodes on my CT as well. Also on an MRI. My surgeon not only removed my tongue tumor but also removed 40 lymphnodes - just to be on the safe side. And sure enough I had cancer in one of them. This cancer can seed to the nodes and NOT be picked up on a CT when it is at the microscopic stage.

That said - keep a close eye on your neck and get to know what is normal for your mouth.

Usually the highest incidence of recurrence is in the first 18mos - after that it's 3 years... and then 5 that are milestones.

As each of these dates pass things will slowly get easier. I am approaching the 3 year mark for my surgery in 3 weeks.

As with anything in life... there are no guarantees. Live your life and enjoy it.

hugs.


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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Lori, in time you will begin to feel differently about everything. Im so sorry you are bothered so much by your situation. Many cancer patients will seek out therapists or counselors who are experienced with helping them to move past their illness. That is no small feat. The horror of what you have just been thru are still so fresh in your mind it makes it harder to get past everything you have been thru. In time it will get easier.

Personally, I have always been a very independent and strong person my whole life which helped me deal with my illness. I am a single parent who raised her children without anyones help. In my life, I choose to avoid worrying and the "what if's". Instead of going there, I focus on helping others which also helps me to feel productive. When I was growing up I learned how to look at the whole situation (no matter what it was) and look towards the solution. I also learned that worrying will never change a thing and only makes you upset which impairs a persons ability to think clearly. This isnt easy to always follow but it can be learned with lots of practice.

Feel free to come here often and let us help you. By being part of our group, you are not alone with this. We understand where you are coming from and how difficult it is to move past the illness and horrendous treatments we all have gone thru.



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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Posts: 269
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Hi Lori,
Hear! hear! to all that was said above. It's is your new normal for today, but as time passes it will change. You mentioned you feel like you are not fully trusting G-d, probably true. However do any of us!? I say maybe for a moment, then we slide back to the fears. Guess the silver lining of that is we run back to G-d and lean on him more often, all day, every day. smile many blessings to you and your family.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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Sorry to hear about the anxiety but it is pretty common. Rather than wait, how about contacting a local support group like http://www.cancersupportcommunity.org/. Also, seek professional counseling now rather than put it off.

Why suffer and wait. It is not much different than suffering physical pain and saying just wait, time will heal. What about now? Get some relief, why on Earth wait?

Good luck
Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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Posts: 381
"OCF Canuck"
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Lori, I also was on the lucky side with no chemo/rads. The thought of recurrence always lurks, but I try to shove it to the back of mind, as to be frank, there is nothing I can do other than follow the doc's directions. It does get better over time, but a sore mouth/throat will definitely throw everything into question.

I was surprised to see you had so many biopsies/ultrasounds post surgery. I expect that contributes to the issue. I go every 3 months for a scope/checkup, and always get stressed a couple of days before, so if you have so many appointments, your brain doesn't get a chance to chill out. Is there a way to structure it so you're not constantly going? Has your doc told you that at a certain point the appointment frequency will reduce?


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
Joined: Mar 2013
Posts: 37
las3645 Offline OP
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Thank you for your support. I think for me this is the first time I have had the opportunity to process it. I know that sounds weird, but with how quickly things moved from diagnosis, to surgery, to "all done", I have yet to grasp the concept. During these 8 months I have also had several other major life events: moved to a new city (and all that goes with it new doctors, new friends, new church, new stores,etc), started 2 new jobs, and became a landlord.

I have had to be brave, and only allowing myself to view cancer from that standpoint, BRAVE. And now that I have a moment to reflect I am caught on the how, and what next. I am definitely looking into volunteerism and gaining that perspective back.

Regarding all the appointments, biopsies and scans. I feel every time I go to the doc there is a new thing they are unsure about. So we watch it, then it doesn't change, so we biopsy it or scan it. I am going to the doc every two months and I have no watch and wait things right now (the first time since surgery).

I am beyond thankful for the amazing care I am receiving, and grateful for everyday I get with my beautiful family. Appreciating life even more now than ever before. I do think I am going to find some kind of support group to get involved with!

Much love to all of you! You all are amazing.


Lori, age 30 (HPV-, non-drinker, non-smoker, non-tobacoo user)
Dx 3/18/13 - T1N0M0 SCC L.Tongue
Tx 4/4/13 - Partial glossectomy (no rad/no chemo).
8/8/13 - Thyroid FNA - benign nodule
12/20/13 - Tongue Biopsy - Mild hyperkeratotic dysplasia
12/26/13 - Lymph FNA - benign (dx Cervical lymphadenopathy)
3/17/14 - Tongue Biopsy - normal tissue
5/5/14 - Tongue Biopsy - (awaiting results)
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