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#193172 10-07-2016 08:38 AM
Joined: Oct 2016
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Karina Offline OP
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Hello to all,
I have been reading here for some weeks now. I was sure that the lesion on my tongue could very possibly be OC.
This past Wednesday (10-5-16) I was seen by an ENT who took a biopsy. He also told me he was 100% sure that the mass was malignant and will require, at least, surgery.
I'm hoping to get the pathology results by phone sometime today and I'm not ashamed to say "I'm very frightened".
I question whether I'm strong enough to go through treatment because the last 2 years have been an orthopedic nightmare for me. I have osteoporosis and suffered 5 severe fractures...each one before I was recovered from the previous. 4 of the Fx's required surgery to implant hardware. I've gone from bed ridden to wheelchair to walker to 2 canes.....several times. I'm in chronic pain and not yet able to drive. Can't imagine adding to my pain.
I try not to do the "What If's" but in some cases it can be helpful...I think. Right now I'm in gear to prepare.
ie: eat,eat,eat. I'm a thin person.
new pillows,stock up on nuti shakes,look for an iPod ect. I'm hoping that I'll be more at ease knowing that my world is as comfy as it can be. We'll see
I'm sooooo glad to have found this site!
Be Well...Be Happy
Karina





10-5-16....Biopsy @ ENT office
10-7-16....Dx SSca Lt Lat Tongue
10-14-16...By examination called T1
2nd biopsy (core) for depth
Pre anesthesia testing done
Surgery date Nov.2
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Hi Karina,

Welcome to the forum. I am still hoping you may not need our group after all.

You are right to start eating now to boost your weight whichever way the biopsy goes. It may not be necessary to stock up on nutri shakes yet as the doctor/dietitian may recommend something else if you need it and what you've got may go to waste. That was what happened to me. I stocked up on protein powder, Ensure, etc and none of that was used in the end so it went to waste.

I applaud your determination to keep yourself comfortable. Taking good care of yourself and not to let the situation get you down is the best attitude to have to get you through treatment.

Please keep us posted and if you have questions, don't hesitate to come back and ask.


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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Posts: 6
Karina Offline OP
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I just now received "The Call" re: biopsy results.
It's official....SSCa
Was also informed that the clinic can't find an ENT/oncologist/surgeon in Northern NM that accepts my insurance.BLAH!
Next step is CT & PET scans. Then we'll discuss treatment options.
Guess I'll spend more time preparing till then.
Let the games begin
Anxiety X 10
Karina
PS...Hiya Gloria..Thanks for your reply.
Nutri shakes never go to waste in my home. I have been drinking them & homemade nutri smoothies for years.
Not in place of meals ....as an addition to keep my weight up.

Last edited by Karina; 10-07-2016 03:27 PM.
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Welcome to OCF, Karina! Im very sorry you got the bad news about your biopsy. Its never easy hearing those words... "you have cancer". I still remember exactly where I was and which doctor was the one who broke the bad news to me (that was over 9 years ago).

Im sending you a private message (PM). Click on the tiny flashing envelope next to the my stuff tab to get your PM.

There will be lots of appointments in the near future for you. If you are able to find a Comprhensive Cancer Center (CCC), that would be a very good choice for 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. There are places that provide free or very low cost airfare and rooms for cancer patients who travel for their treatments. It really is very important that you find the very best medical team you can and put your faith in them to eliminate the cancer. Studies have proven being treated at a CCC does give patients a better outcome than smaller inexperienced facilities.

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. 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. It could be all kinds of minor things that others can do to help, all the small things can add up to being overwhelming when you are sick. If you have radiation you may need someone to help you get back and forth to the treatment facility. When feeling bad and taking strong pain meds driving a car isnt the best idea.

There are places to go that help with things like transportation or medication co-pays. Call the American Cancer Society and ask about their patient driving program and about pharmacy vouchers. I had a voucher for $300 to help cover my co-pays for prescriptions at my pharmacy and I also was lucky enough to have someone drive me a couple times to my treatments. Since that low point in 2007, Ive become a volunteer driver myself and driven countless patients to their appointments.

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.

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. 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 any treatments.

As you mentioned you are on the slim side. This is something I nag everyone about no matter what size they are when they first developed cancer. Intake is one of the most important things! Every single day you should take in at least 2500 calories and 48-64 oz of water. Being slim, you should probably push yourself to get more calories so you dont lose any weight. I would suggest shooting for 3500-4000 calories daily beginning immediately. Start eating all your favorite foods now, desserts too. I used to make gigantic chocolate peanut butter shakes that were a good 1500+ calories each. If you add one or 2 of these per day you will be able to maintain your weight and hopefully even put on a couple pounds.


List of CCCs

OCF main pages... Financial Assistance

OCF main site --- DIAGNOSIS

OCF main site --- TREATMENT

(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake (1200++ calories per shake)

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder
(check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.

I hope this info helps and isnt overwhelming. Stick with us and stop by often, we are here to help you get thru your upcoming adventure. We're one big family here and we welcome you just like you are a long lost relative. Hang in there!!!





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: Jul 2016
Posts: 85
Supporting Member (50+ posts)
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Joined: Jul 2016
Posts: 85
Hi Karina ! I too am glad you are preparing and do realize how important "taking care of you" really is. Ms Christine's guidance is right on and the entire board is here to help you win this battle.

I too have severe osteoporosis and have had 7 spine fractures. I thank my lucky stars every day for a motorized recliner chair and due to my hubby a very easy life.

Please stop in often, we are here to support you. Let us know how you are doing and please do not hesitate to ask any questions that pop up.


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***


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