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Joined: Oct 2014
Posts: 4
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Joined: Oct 2014
Posts: 4
I've been on here before and wasn't able find anyone like myself. I am the second young female that was treated for my cancer in 2004 at Washington University, St. Louis. I'm 10 years out and have seen all of my doctors about my issues and problems, and even though they are helping in every way possible the answers I want, I can't get. The questions I'm asking are ..... what can I expect next? Because I'm one of the first to be diagnosed and treated with Squamous Cell Carcinoma as a young healthy female in the mid-west they aren't sure. Most people with this type of cancer were typically old men that smoked and drank their entire lives and passed away before they reached this far out of recovery, from other complications in their lives. I'm just looking to find someone else like myself. I'm not saying that an older person or someone with a different type of cancer won't have something in common but I was at the beginning of a nasty trend of cancer diagnosis. Many people are now being effected in the same way because of HPV (I wish I could say I knew that was the reason, but mine is believed to be hereditary, there are no other reasons). The treatments now aren't as harsh as mine was at the time, because they didn't know what they do now. Please if you know anyone that is similar to myself I would love to talk to you or to them. Thank you for reading my post.

Joined: Jun 2007
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Welcome to OCF! Congrats on your 10 year anniversary!!!

In the St Louis area we have held the OCF Twin Cities walk. The events are great places for survivors and caregivers to get together. Seems like we are long lost relatives when we meet. We all understand where you are coming from and understand just how hard a road you must have traveled.

Check out some of the posts under the After Treatment-Long Term Survivors section. You will see some members who have issues with their blood pressure spiking for no reason. There are many younger survivors but they dont always stop in and post on a regular basis. Hopefully you will be able to connect with someone similar to yourself soon.

Best wishes!


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
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
There are a few young people who've had this and are doing well. I'm older, but in a similar situation to yours as I didn't drink or smoke. Hugs and welcome.


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
Joined: Oct 2013
Posts: 559
Likes: 1
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Oct 2013
Posts: 559
Likes: 1
Hi Lauren - I didn't smoke either, but I have been known to drink a beer or two (but usually only two). I wasn't in my thirties when I was diagnosed, but if you're HPV positive we probably have much in common.

I suppose I share your wondering "what's next", but in all honesty I don't think about it much. Life has pretty much returned to normal except that food still doesn't taste good yet and I still have bouts of dry sinuses and dry mouth. There are whole days that go by now, where I don't even think that once I had cancer, and went through that awful treatment. I suppose if I start to get symptoms of something then I will start thinking about it more, but right now, life is busy so my days are full of living.

One of our long term survivors, who is no longer with us, username: Bart, taught me early on after joining OCF that worrying about this stuff is really counter-productive and a waste of time, not to mention that doing it will make you go bat@#$% crazy. I listened to his wisdom and adopted that way of thinking and living as a survivor has been all the easier because of it. It will be what it will be, nothing we can do about it, worrying about it won't help. May his soul rest in peace.

I hope you find who you are looking for. But, if you don't, there are plenty of us older survivors who share your thoughts and are willing to be your friend.

take care,
Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Lauren, my son was only 33 when he was diagnosed with SCC, a non smoker, living a healthy lifestyle with no hereditary possibilities for his OC. But even if it were hereditary, everyone is different in their reactions to OC so because someone else in your family has the same type of SCC, it doesn't mean your reaction is the same. My son's SCC was almost 8 years ago and he doing well, now. It's difficult not to worry about the "what ifs" - I do it, too- but I try to limit the time I think about it and switch over to all the positives in my son's survival. Keeping the stress level down is better for keeping you healthy, too.


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.)



Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Lauren, as a younger cancer survivor, I believe you should be followed in a program called ACE, After the Cancer Experience. I was in the program for a while as it is the only structured after care program I knew of. The program was designed with younger people in mind and involves modification to most screening programs to account for issues, longer term, from treatment. Most major cancer centers have such a program.


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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