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Tink222 Offline OP
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I've been reading your posts over the last week and waiting for the results of my tests to come back. Throughout the week the week I've had so many questions to ask but I can't find the words today. They will come I'm sure...I'm curled up in a blanket on a.childrens bunk bed wishing I didn't let my family drag me on vacation. They mean well but only you (forum members) know what is whirling around my mind.

I'm from Roanoke, VA, 55 year old, SCC oral lesion on floor of mouth and poss 2 lymph node involvement. I smoked as a young adult, quit for 15 years then started up again 5 years ago until...5 days ago when I heard the potential diagnosis.


SCC 4a Biopsy- under tongue 4/7/17 results Squamous Cell Carcinoma. Surgery scheduled 5/9/17. Tumor Boarf reviewing case next Wednesday 5/3/17 Appt surgery/reconstruction/involvement TBD a affected area-base of tongue on the entire right side floor of mouth from base of tongue to wall of mandible, lymph nodes in neck involved. Proceeding w/PET, surgery/ reconstruction TBD, trach, port, radiation, chemo, feeding tube. Learning from you everyday. DeboraLee
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Hi Tink....be aggressive in getting answers and treatment. I never thought at 54 I would have throat cancer. Try to stay upbeat. I know it's hard but that's important. I just finished my first week of radiation and chemo. I am getting my second chemo treatment now as I type this! I take each day at a time and have faith in God's will!

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Hello Tink & cougar dad. Sorry for your diagnosis. Definitely get on the ball with your treatment plan, if you are diagnosed with SCC. Keep a positive attitude that's a big portion of your battle & it's success.

My history is different than yours. I had SCC Base of Tongue in may 2009. I did both radiation n chemo. After my treatment the tumor didn't totally shrink so I had a neck dissection.

Im 6 years C-free and so very grateful to be alive. I have one thing to say.....please school yourself and do alot of research. Educating yourself is KEY. Let the Dr. Give you the prOs and cons.

Everyone is different . I was 42 n knew ZERO about Cancer. The radiation is super important but very damaging as well. For me, it's been a life changing experience due to having problems with RADS. Always remember, everybodys different so your experiences could be the opposite from what I went thru.

Keep your head up...educate yourself . I wish you both the best and a successful journey.


SCC 5/21/09 Base Of Tongue, Stage 4-age 42
5X Cipltn, 37 IMRT end 9/09
10/09 neck disection- 2nd Feed tube instal
2/11 Tracheostomy-
2/12 - 2/13 over 25 Diolations
2/14 Total voice loss
2/15 Total Laryngectomy Researched
2/16 Jaw bone starts to deteriorate TL put on Hold
6/16 30+ HBO dives
Annual PET shows NED until the hot spot lights up the jaw bone
1/17 Jaw Replacement research
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Hi Tink,

Welcome to the forum although I'm sorry you have to join our circle of friends. A cancer diagnosis is a huge shock and it takes a bit of time to recover from it. Take your time and post as questions crop up and we will be here to help and support you. It may not seem so now but you will probably be glad when you are in the middle of treatment that you have gone on holiday with your family. You will find that once the doctors decide on a treatment plan, you will be so busy with all the preparation that you will have no time for anything else.

I'm sure Christine B will be by soon and advise you on nutrtrition and hydration during treatment, just rest assured that you are among friends who have been through it and understand what your journey is like.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Waiting is the worst!!! Im so sorry you are going thru this right now. You are in the very best place for info and support. Dont worry, we will help you get thru whatever treatment plan you select.

The very best thing you can do is focus on what is controllable... your intake. This is what will make or break how easily you go thru your treatments. I know with chemo its not easy to always take enough in every day. Im glad you have taken advantage of extra hydration. This helps most patients to instantly perk them up, at least it did for me. I hope your physician has written a standing order so you can do hydration a few days a week. Some days you may have to push to make the daily minimums of 48-64 oz of water and 2500+ calories daily so any extra help (like getting hydration) will make it easier.

You will also want to schedule a dentist appointment to get a good check up and you may need flouride trays made if you will be having rads. I think I remember reading you already went to the dentist. You should have a complete blood work done including thyroid levels (men also should have their testosterone levels done too). Its easy to take care of this now before treatments, but its impossible going backwards to get your baseline numbers after you have had treatments.

Anyone who offers their assistance when they find out about your illness, tell them when the time comes you will let them know what they can do to help. Write down their name and contact info so if you (or someone helping you) needs a hand they can reach out to the people on your list. Theres a million minor things that others can do to help. All the small things can add up to being overwhelming when you are sick and cant do everything you used to. If you have radiation you may need someone to help you get back and forth to the treatment facility, pick up prescriptions, etc. When feeling bad and taking strong pain meds driving a car isnt the best idea so if possible line up a couple drivers now. You can also call the American Cancer Society 24/7 ask about their volunteer driver program and their prescription reimbursement grant of $300 . Theres many more little tidbits like this you will learn as you go. Read thru the posts here and also read and absorb the main OCF site. Theres tons of important info in both places. By learning about your illness, you will become a strong advocate for yourself. Ive included very important links to help you find important info.

As you are finding out, there are many appointments before you get treated. If you havent had a second opinion I would strongly recommend getting one. If you are able to find a Comprehensive Cancer Center (CCC), that would be an excellent choice for a 2nd opinion and even a treatment facility. They use a team based approach so all the experts are on the same page and work together to create your treatment plan. Tumor boards are when all the specialists get together and discuss each individual case. Then a treatment plan is created well before any surgery is planned. There are even places that provide free or very low cost airfare and rooms for cancer patients who travel for their treatments. Find the very best medical team you can and get started on the road to eliminate the cancer.

Hang in there and always know its ok to lean on us. We have been thru it and can give you tons of pointers to make this as easy as possible. Best wishes!!!


List of CCCs

OCF main pages... Financial Assistance

OCF main site --- DIAGNOSIS

OCF main site --- TREATMENT






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: Apr 2017
Posts: 25
Tink222 Offline OP
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Do you go to Chemo everyday?


SCC 4a Biopsy- under tongue 4/7/17 results Squamous Cell Carcinoma. Surgery scheduled 5/9/17. Tumor Boarf reviewing case next Wednesday 5/3/17 Appt surgery/reconstruction/involvement TBD a affected area-base of tongue on the entire right side floor of mouth from base of tongue to wall of mandible, lymph nodes in neck involved. Proceeding w/PET, surgery/ reconstruction TBD, trach, port, radiation, chemo, feeding tube. Learning from you everyday. DeboraLee
Joined: Apr 2017
Posts: 41
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Chemo 1 day and radiation 5 days

Last edited by cougardad62; 04-13-2017 08:44 PM. Reason: Wrong days

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