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Joined: Aug 2016
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JohnJr Offline OP
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Hello everyone,

Found this forum in hopes of gaining knowledge and support for my father who, today, found out he has tongue cancer.

This is hard for everyone in my family considering my parents still have two of my young siblings at home. (One 12 and the other 10)

Months and months ago he had a white spot on his tongue that he got after he had a tooth capped. He was never a smoker, used chewing tobacco or drank heavily at all.

After months of doctors appointments and shitty misdiagnoses, we got the results of the biopsy today.

"Invasive Moderately Differentiated Squamous Cell Carcinoma"

Which to all of us was a complete shock given the fact he's lived a very healthy lifestyle.

We don't know how far or if its spread elsewhere. One doctor said his lymph's weren't enlarged so I'm holding onto hope in that respect.

Like I said I'm here to learn everything I can to help my dad through this so he can see his two youngest grow up. (I'm the oldest child at 27)

Any Advice or words of encouragement are greatly appreciated.

My family is ultra competitive and doesn't quit so I plan on him fighting harder than he's ever fought before given the stakes.

Thank You All.
John



CareTaker for my dad (John Sr)
Being Treated at Chao Family CCC and UCI
Diagnosed T2 SCC BOT 8/9/2016
Partial Glossectomy w/ Neck Dissection Done 9/22/16
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Hi John,

Welcome to the forum. I am sorry you have need to be here, but I am sure that everyone here will try their best to support you through the ordeal.

Did the doctors mention anything about whether the cancer is HPV positive? You are at the beginning of an arduous journey so it is good to hear that you are a very competitive family and are prepared to fight.

You will probably get your Dad's treatment plan from the doctors soon which will tell you whether he will have surgery, chemo and/or radiation. In the meantime, keep up your Dad's spirit by serving him all his favorite food as once treatment begins, he may suffer loss of taste or may develop difficulty eating. For now, don't worry about putting on weight as it is probably helpful to put on a few pounds prior to treatment.

I am sure Christine B will be along soon to talk about nutrition and hydration. It will help for you to read some of the threads on the forum carefully. That was how I picked up all kinds of tips and had some of my questions answered when my husband was getting treatment. It is important, too, to read the main pages of the website as they contain really important information.

Keeping you and your family in my thoughts.


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.
Joined: Aug 2016
Posts: 14
JohnJr Offline OP
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Joined: Aug 2016
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Thank you so much. I'm very thankful I found this group. I didn't see any mention of HPV+ or negative. That is a question I'll have to bring up with the oncologist.

Staying positive for my family is my main goal even though at this moment it feels like the weight of the world is bearing down.

Thank you again and I will update in other sections of the forum as we progress with treatment.


CareTaker for my dad (John Sr)
Being Treated at Chao Family CCC and UCI
Diagnosed T2 SCC BOT 8/9/2016
Partial Glossectomy w/ Neck Dissection Done 9/22/16
Joined: Aug 2016
Posts: 14
JohnJr Offline OP
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Joined: Aug 2016
Posts: 14
Also, any supplements anyone would suggest? I've heard good things about green tea extract as well. I searched on the forum, but didn' really come up with anything.


CareTaker for my dad (John Sr)
Being Treated at Chao Family CCC and UCI
Diagnosed T2 SCC BOT 8/9/2016
Partial Glossectomy w/ Neck Dissection Done 9/22/16
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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Joined: Jun 2007
Posts: 10,507
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Welcome to OCF, John! Im very sorry you have the need for our group! We will help you get your father thru this so you are definitely in the right place.

It is in the patients best interest to get treated where the medical team sees hundreds of cases per year instead of somewhere that has treated only a handful of patients. It has been scientifically proven patients treated at Comprehensive Cancer Centers (CCCs) have the best outcomes. Using a team based approach so all the specialists work together has many advantages. I always recommend patients to get the very best medical team they can weather its 10 miles from home or across the country. If your father is able to travel for treatment I think it would be worthwhile to at least check them out.

List of CCCs

There will be so many things to do before your father begins any treatments. Make sure he gets a full blood workup done including thyroid levels, men also get testosterone levels. He may have problems years down the road with his thyroid. A blood test now ensures he will know what his normal baseline thyroid levels should be. Taking a pill a day to manage his thyroid isnt a big deal, but getting the baseline level is!

To prepare, if he hasnt seen his dentist try to make an appointment right away before any treatment would begin. Anyone who undergoes radiation for head and neck cancer should wear fluoride trays on their teeth. This can help prevent major dental issues after rads. Also using a waterpik, having impeccable daily dental maintenance and getting regular (if not more frequent) dental cleanings.

Regardless which treatment plan or facility is selected your father will want to start paying attention to his intake now. Eat all his favorites now, desserts too. If he is slim or average build putting on a few extra pounds is a good idea. Almost all OC patients lose weight (some significant amounts which isnt good) during their treatments. When a person has cancer they burn up calories at an increased rate. Your fathers ability to eat normally may be compromised for a couple weeks if having surgery, with rads its usually more like a few months. OC treatments have some lousy side effects, this is why I stress to eat now. One of the best things I can tell you is focus on what is within your control... your fathers intake! One of the hardest things if doing radiation is to keep the daily intake high enough. If you can start right away getting your father used to taking in at least 2500 calories and 48-64 oz of water daily then it shouldnt be as hard to keep this up during and after treatments. Intake really is a major problem for OC patients and I cant stress enough how critical it is to begin focusing on it right away.

As far as supplements go... ask the doc. Many supplements should not be taken while undergoing cancer treatments as they can interfere with the treatment. Our site promotes only things that are scientifically proven. All too often cancer patients and caregivers out of desperation become targets for "alternative" treatments and products. At OCF we take our members lives very seriously and discourage unproven treatments, medicines, etc from being a part of our forum.

People often want to help but they dont know what they can do. Anyone friends or relatives who offer their assistance, tell them when the time comes you will let them know what they can do to help your father. Make sure to write everyones name down for later in case someone else has to give people a call or text them to get them to help. Theres a million little things that can quickly add up to becoming overwhelming to patients and their families. Take all the help you can so this is easiest on everyone involved.

Read thru posts and also on the main OCF pages to educate yourself about your fathers illness. An informed patient and caregiver make better advocates for themselves. Stick with us and feel free to post and ask questions. We are here to help smile

Best wishes with everything!!!


PS... Im send you a Pm with a link. It will help you quickly learn how to navigate our site and to add a signature. Click on the tiny flashing envelope near the the My Stuff tab.



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: Aug 2016
Posts: 14
JohnJr Offline OP
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Joined: Aug 2016
Posts: 14
Thank you, Christine.

It's been an extremely difficult day for my family and I. Never in my wildest dreams would I have thought that it was cancer.

The thing that kills me the most is knowing I have two kid sisters that could miss out on their dad growing up.

I'm really trying hard not to be so negative, but I worry it was diagnosed too late. I keep thinking its a bad dream and I will wake up, but reality is setting in.

Regardless we will fight.

I did get the Private Message and I will add a signature. Thank you for the support.


CareTaker for my dad (John Sr)
Being Treated at Chao Family CCC and UCI
Diagnosed T2 SCC BOT 8/9/2016
Partial Glossectomy w/ Neck Dissection Done 9/22/16
Joined: Jun 2007
Posts: 10,507
Likes: 6
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: 6
Its never easy when you are forced to face a loved ones mortality. There are plenty of patients who have been diagnosed late who have survived. OC is a horrible disease that causes most patients to have pretty bad side effects that affect basic life necessities.

Take it day by day and try your very best to avoid the "what if..." type thinking. At this point you dont have much info so its pretty easy to think negatively of the worst possible outcome. The unknown is always scary but with practice you can manage it. If you cant stop from doing that then when you catch yourself "going there" simply give yourself a few minutes to think about it. After those minutes are up, physically get up and "change the channel". Walk to another room and force yourself to do something positive. Anything that is positive and keeps your attention will help you to avoid worrying too much. All worrying does is get you upset and cloud your clear thinking. Its is unproductive and can literally steal your time away from you. All that time you spend worrying could be spent making memories with your sisters or father. I used to clean out my closets and boy when the time came for me to start treatments, I had one spotless house.

Your sisters are old enough to understand your fathers illness. It would be a good idea to get some family counseling which should be available wherever your father gets treated. Some patients need more one on one therapy and many will take anxiety meds to get thru it. The stress of this affects caregivers too and many will get anxiety meds as well. Its not anything to be ashamed of, its just another tool used to get thru this rough patch.

I would guess that 5-10% of those diagnosed with OC are patients who have no known cause. If your fathers cancer is located in the base of his tongue or tonsil area it could be caused could be HPV+. Its a virus that most of the population gets but their bodies clear it without any bad consequences, but a few have one of the bad strains turn into a disease. This is something that we now have vaccinations to prevent. Your siblings are the perfect ages to start the 3 shot course of Guardisil. The Guardisil shots are effective against the strains of HPV 16 and 18. Those are the types the cause cervical cancer, anal cancer, gentile warts, penile cancer and oral cancer. Both boys and girls can get this up until age 26 but recommended to get early before they would ever think of becoming sexually active. I could go on and on about this but it may not be relevant to your fathers illness. Heres more info if you want to read about it...

CDC--- HPV

Sorry to get off topic. Hang in there. Reading about the disease can help to make you a strong advocate for your father. We know what you are going thru and its horrible!!!! Its ok to lean on us. We understand and are here to help you and your family.


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: Aug 2016
Posts: 14
JohnJr Offline OP
Member
OP Offline
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Joined: Aug 2016
Posts: 14
Thank You so much for all the support thus far. Today so far has been a better day for me. I am at work and keeping busy. My father even returned to work. He plans to work until he has surgery.

His next appointment is this Friday with the oncologist. I'm anxious to get him seen and get going with treatment.

I cannot go with him to the appointment, but im versing my mother on what questions to ask. Any questions you would suggest asking?

And I've had GAD (General Anxiety Disorder) since 2011 and I have done cognitive therapy for it. So dealing with anxiety has been pretty decent for me so far given the gravity of the situation.

Thanks Again for all the support. Ill update in another section of the forum after the first meeting with the oncologist.


CareTaker for my dad (John Sr)
Being Treated at Chao Family CCC and UCI
Diagnosed T2 SCC BOT 8/9/2016
Partial Glossectomy w/ Neck Dissection Done 9/22/16
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Im glad to hear you and your father have both went back to work. Keeping busy will help keep your mind off worrying. Plus feeling productive is always a good thing.

If your father asks the doc maybe he can tape record the appointment. All too often bad news is heard and the ears suddenly stop functioning. Im glad your mother is going with him so at least he has someone who can take notes and ask questions. She should write down all the questions and answers. This appointment is likely to be a long one.

I would ask things like this...

How many patients with OC has the doctor treated this year? How about over the past 5 years?

Is he affiliated with a CCC?

Does he participate in a tumor board with a team based approach?

Is the surgery done robotic assisted (davinci)?

Explain what collateral damage the patient will have?

How long is the surgery?

Explain exactly what is going to be done. How much tissue is being removed?

How wide of margins are expected to be taken and what is the total amount of tissue that will be removed?

What complications could the patient have?

Will further surgeries be necessary?

Will other treatments be required after surgery?

What stage is the cancer and what type? (most likely its squamous cell carcinoma AKA SCC)

If having surgery, just remember surgeons cut so thats what they recommend. Once its gone it cant be put back. Your father does not want to end up being treated by doctors who have only treated a handful of OC patients. At a CCC they are used to dealing with OC and see hundreds of patients a year. They work all on the same team to come up with the treatment plan. Everyone is on the same page, even the patient can go to the tumor board meetings. This is why going to a CCC if possible is so important. At the very least, take a look at the CCC list in my previous post and check out if one is near you.

If you havent already checked out the main OCF site, heres some links to read thru (or your mom can)...

OCF main site --- Diagnosis

OCF main site --- Treatment


You can print out posts if it makes things easier for your parents. Good luck to your parents at the appointment!!! Update us when you have time.


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: Aug 2016
Posts: 14
JohnJr Offline OP
Member
OP Offline
Member

Joined: Aug 2016
Posts: 14
Does Insurance usually cover a CCC?


CareTaker for my dad (John Sr)
Being Treated at Chao Family CCC and UCI
Diagnosed T2 SCC BOT 8/9/2016
Partial Glossectomy w/ Neck Dissection Done 9/22/16
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