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Hi, my name is Kathy. I am 63 years old, and I live in coastal North Carolina. Apologies in advance for what's sure to be a lengthy post. The process of writing is helping me to organize my thoughts.
Four days ago I was told that a problematic spot on the side of my tongue is stage one cancer. I was knocked back on my heels, especially considering that seven weeks earlier it was only “moderate dysplasia”. Now that I am mentally processing this, and getting more informed, I am trying to put together a list of questions which I should ask.
Here's my timeline, and what I know so far:
11/2016: My dentist noticed a spot on my tongue that worried her. She wrote me a prescription for Kenalog. The pharmacist said “they don't make that anymore” and pointed me to the OTC Orabase (grr … I now know that the twit wasn't doing her job).
03/2017: When the spot failed to heal, the dentist referred me to an ENT. He wrote another prescription for Kenalog, (filled by a pharmacist who was NOT an idiot) and when it still wouldn't heal, he did a punch biopsy. I believe the result was leukoplakia and glossitis. I saw the dentist in May, and she was glad I had it looked at.
01/2018: In November of 2017 the dentist was again worried, and suggested I return to the ENT, which I did in January. He referred me to a more specialized ENT a couple hours away near a big teaching hospital. She did another punch biopsy in late February, which came up as moderate dysplasia, and a CT scan (because I was complaining of fullness and itching between my ear and jaw) , and scheduled a recheck three months out.
04/2018: Halfway through the three months, I was very concerned about slow healing, and discomfort (would get better and worse). I called her after a bad weekend and they got me in that very day. I never expected to be subjected to TWO punch biopsies just 7 weeks later … YIKES!
So here I am with a stage 1 dx, feeling like a deer in the headlights. The pathologist reported that the cancerous cells went down through the entire depth of the plug, therefore the Dr is planning to take the lymph nodes at the same time she does surgery on the tongue. That's scheduled for June 12.
I am trying to get the reports on all three biopsies, and the CT scan, but I can't get them until Monday. I plan to schedule a consultation with a nurse friend who used to have a healthcare system navigation business, and was also assistant to the radiation oncologist at our local hospital. (I used her services in pushing to get my elderly mother's needs meet when she was in a rehab unit).
So now I'm trying to make a list. So far I have:
1) Should I seek a second opinion re/ treatment options?
2) ???? (brain fog sets in and my eyes glaze over)


Kathy
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Do you have a first opinion on your treatment options yet? I couldn't quite tell. And yes, if it makes you feel better, it's worth getting a second opinion, if you can find a doctor you trust. Are you going to take that friend with you to your appointment? It's a really good idea to have a second set of ears to listen to what the doctors tell you, because as you've already noticed, it's really hard to focus and remember sometimes. ((Hugs))

Hopefully Christine or somebody will chime in soon ... one of the long-term members who really has a great grasp on the things to remember and ask. I feel like I'm still learning, myself, most of the time. But I wanted to post anyway, just so you know you're heard, and you are NOT alone.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
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Thank you so much KristenS. The Dr told me surgery to remove the area on the side of my tongue which encompasses both the biopsy that was stage 1, AND the area that came up nothing (because it was hurting and looks weird, dark red). She said there might be radiation depending on whether anything is found in the lymph nodes. She said chemo is unlikely. That's all my understanding so far.

If I go somewhere for a second opinion, it's highly unlikely that she would come along, as it would be over 150 miles away. But my husband will come. I served as his ears and brain though six surgeries after a fall off a ladder, and now he's there for me, 😍.

Last edited by KathleenS; 05-11-2018 12:58 PM.

Kathy
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Welcome to OCF, Kathy! You are in the very best place to get info and support. We have all been where you are and understand all too well the shocked deer in the headlights feeling.

Im not sure if I am reading this correctly? You were told you are Stage 1 by which doctor? Im pretty sure you are talking about the second ENT. If so, is the ENT someone who specializes in treating oral cancer patients? It sounds like they are as I took it to mean they are affiliated with the teaching hospital. A teaching hospital could be a Comprehensive Cancer Center (CCC). The CCCs are the best of the best in the US and have been scientifically proven to have the best results with cancer patients. Thats definitely where you will want to be if at all possible when you start talking about surgeries or your treatment plan. At a CCC they use a team based approach so all the specialists are working together to create an individual treatment plan at whats called a tumor board meeting. It sounds like the person who gave you the diagnosis may not be part of the teaching hospital if they just scheduled surgery without consulting other doctors. I'll explain more in a bit.

As far as the nurse friend, it really isnt something thats a necessity. Having them around will help give you moral support and hopefully help with asking the right questions of the right doctor. We can always use all the support we can get. Some of the bigger hospitals and CCCs have started using nurse navigators who get assigned patients and they walk them thru every single step from diagnosis thru a successful recovery. Now that would be a huge help!!! Im sure the person you mentioned was a great asset for your mother's care but unfortunately most medical personnel (unless we are talking about those who specifically treat oral cancer patients themselves) are not that familiar with oral cancer. Its not one of the major cancers where doctors constantly see patients. For example all doctors and nurses know about breast, testicular, lung and skin cancer. Oral cancer is NOT like other cancers! It cant be hidden with clothing or makeup and chemo alone will not eliminate it. OC negatively affects vital parts that in turn affect a patients everyday life. OC can give patients serious long lasting issues with eating, drinking, speaking, etc. For 2018 the US will see roughly 52,000 new oral cancer patients. Thats not alot considering its for the entire US. Even many regular dentists have never been involved with treating an oral cancer (OC) patient. For something thats so specific you may want to save that extra step and start by calling around for a second opinion.

Any reputable doctor will have no problem with their patient seeking a second opinion, they will encourage it to make sure their patient gets the very best medical care. I hope you can easily obtain copies of the biopsy results and any other office notes on file. Thats an important part of having another qualified doctor review your case. Im always a bit leery of any doctor who rushes the patient into surgery without giving them time to get another opinion. It sounds like you have already scheduled your surgery. Just remember.... surgeons cut and will always advise a patient to have surgery. Once its been removed, it can never be fully restored to exactly its original function and whats removed can never be put back.

I dont know if this is something that you will need but Im including it just in case. If you end up traveling for another opinion or treatment, there are free or very inexpensive ($10/night) places to stay near most of the CCCs. Hope lodge is one of the most common ones. There are even airlines that provide free seats for cancer patients who are traveling for their health. I dont know about availability but Id suspect these things would be in great demand. The link is below for that as well.

When people first hear of your illness dont be surprised when they offer all sorts of advice. Too often its second or third hand info which isnt relevant to your exact situation. It usually has things that someone learned from their "Great Aunt Sally" who had a neighbor that had a daughter with xyz cancer in 1999 and got thru it just fine because they rubbed apples on their armpits. Yes, that was meant to be funny! smile But seriously, take the unsolicited advice with a grain of salt. Most people really are good hearted and do want to help when someone they know has cancer. When you talk to friends and relatives about your cancer, dont be surprised if they offer their help. Start making a list, take down their name and contact info then tell them when the times comes you will let them know what they can do to help. Theres a million little things that can make a difference for you when you arent feeling the best. Things like walking the dog, mowing the lawn, picking up prescriptions from the pharmacy, cleaning the cat litter, doing a load of laundry are all small things that can mean alot to someone who may not feel quite like their normal self. At this point it sounds to me like may you still have a ways to go before you have a complete treatment plan. Once you have seen all the right doctors, your treatment plan will be made and then a flurry of appointments will keep you on your toes. Im mentioning making a list of helpers so you will already have this completed by the time you go for surgery or start treatments. Its something positive you can do. It also helps to keep you busy so you dont focus on the "what if" way of thinking too much.

At some point everyone will need help. Unfortunately many patients do not like to ask anyone for help. I was overly independent when I was diagnosed in 2007. It took me a while for it to sink in and even longer to fully grasp the importance of having people to help get me thru everything. Without having a caregiver I suffered so much more than I should have. If you have someone to help you and be your caregiver you will need them at some point. Nobody gets thru this alone, we're here to lean on as much as you want.

Your mouth may be a little tender from the biopsies but do your best to start having all your favorite foods, desserts too. Dont concern yourself with calories and if you are on the slim side you should gain a few pounds. Most OC patients lose weight at some point during their treatment. Doctors prefer their patients to not lose a single pound, even for those who are overweight. When a patient has cancer, their body will burn up calories at a greatly increased rate. Patients going thru treatments or in the recovery phase will need to pay careful attention to what they take in. Every single day OC patients should strive to take in at least 2500 calories and 48-64 oz of water. It sounds like alot but its not! This is vitally important for those OC patients that will have radiation treatments. No matter what your treatment plan will be, Im pretty sure it will impact your ability to eat, drink, chew and swallow. For almost all patients that is only a temporary annoyance. I advise you to eat everything now so you dont go into this carrying any cravings.

Ive included several links below to help you learn more about your illness and just in case you need to find a second or third opinion hospital. There are many different topics available to read thru on our main OCF site. By learning more about your cancer it will help to make you a strong advocate for yourself.

Hopefully I havent overwhelmed you too much by overloading you with too much info. I know theres so much to learn! Feel free to ask any questions you have and we will do our best to get you the correct, up to date answers to everything. Remember, you found OCF. You are no longer alone or isolated in this. We are in your corner now, rooting for you. Hang in there!!!


List of Cancer Centers

US News Best Hospitals List

Main OCF Site... Understanding section

Main OCF Website... Financial Assistance including Air travel/Lodging




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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Hi ChristineB. Thank you for helping me to understand all of this.

The first doctor was local in Morehead City, NC.
I was diagnosed stage1 by the second doctor who is in Greenville across the street from Vidant. That's two hours away from my home.

From Wikipedia: “Vidant Medical Center (previously, Pitt County Memorial Hospital) is a hospital located in Greenville, North Carolina. It is the primary teaching hospital for East Carolina University's Brody School of Medicine and is the flagship medical center for Vidant Health.”

From the Vidant website: “We offer a comprehensive team approach. When you become a Vidant Cancer Care patient, your case is thoroughly reviewed by providers with expertise in your specific condition – including oncologists, surgeons, nurses, therapists and more. They work together to understand every aspect of your case and develop the best treatment plan for you.” … “You can get a valuable second opinion. Many patients come to Vidant Health seeking a second opinion after receiving a cancer diagnosis from another provider. This can help them make a more informed decision about their treatment and care. At Vidant, we provide patients exploring second opinions with the same comprehensive evaluation process that we use for new cancer patients.”

The doctor's bio says “a board certified Otolaryngologist who has completed her surgical fellowship in Head and Neck Oncology and Microvascular Reconstruction”. She did mention the “tumor board”, explaining that other specialties will weigh in, and then are familiar with the case if they have a role in treatment later.

UNC Hospitals in Chapel Hill has a CCC. From Wikipedia: “The UNC Lineberger Comprehensive Cancer Center is a cancer research and treatment center at the University of North Carolina at Chapel Hill. One of 45 National Cancer Institute-designated comprehensive cancer centers in the United States,[1] its clinical base is the N.C. Cancer Hospital, part of the UNC Health Care system. UNC Lineberger is the only public comprehensive cancer center in the state of North Carolina.” I'm considering checking that out.

I am well familiar with both of these hospitals, as my husband had three surgeries at each following a fall in November 2012.

I don't anticipate looking to my friend for help during treatment, but more in regard to deciding whether to and how to get a second opinion; what questions should I be asking the doctors; how to evaluate my options.

I've intuitively begun certain preparations. Fortunately I have a dental appointment in a couple of weeks, so that will be out of the way. I've always been slim, even skinny, but my post menopausal body has crept up to over 140, and now I'm working hard to pack on a few more pounds. I've been trying to consume over 95 grams of protein daily for healing from the latest biopsy. Who knew that would be so hard! I'm not accustomed to eating so much! But it's helping. Between the protein and amino acid supplements, I'm healing from this third biopsy so much faster than the first and second! So I'm determined to keep it up post surgery.

Last edited by KathleenS; 05-11-2018 02:32 PM.

Kathy
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In the link from my previous post, the Understanding section will help to give you tons of info. It even has many things you will want to ask your doc. Im certain you will find it very helpful.

I also suggest checking out the links for the best hospitals and CCCs. Im sorry but the facilities you mentioned I am not familiar with. That does not mean they are bad places or they provide minimal care. When I think of CCCs, I think of the big names (Sloan Kettering, Johns Hopkins, MD Anderson to name a few) which are the top cancer centers in the US. I dont know if the facilities you mentioned are CCCs or not. Its a bit late for me to look thru the links to find out how they stack up. Ive seen far too many places make it appear as if they are a CCC or a CC (cancer center) or affiliated with one. It gets a bit tricky to figure all that out so Im sure your friend will be a big help.


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: 10
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Posts: 10
Yes ChristineB, your linked list of cancer centers does include the UNC Lineberger Comprehensive Cancer Center. Thanks for the links. They are proving most helpful!


Kathy
Joined: Mar 2018
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Hi Kathleen.
I wanted to give a suggestion on your quest to gain weight.
I am a man 5'8", and was fairly overweight for my height, at 195 to 200 pounds.
Well, just a few weeks after my lingual toncillectomy, I lost 19 pounds very quickly. Then I gained some back before my chemo and rads, but I have trouble with food taste, so now I am down to about 165, midway through my treatments.
So definitely a good idea to get some supplemental weight now, and to plan what can help during treatment.
I didn't know better, so I just bought a case of Boost high protein. But in my case, I really needed Boost Plus or Ensure Plus versions, which have high calories, like 360 and 350 if I recall.
And if you need both high protein and calories, Ensure has a version called Enlive. That seems to be the most expensive of all the nutritional drinks. Also, some stores have their own brand labels of the Plus versions, like a supermarket by me, ShopRite. Unless you can find a lot of high value coupons for 6 or 4 packs, the 24 bottle cases at warehouse clubs, will usually provide the best value.
Best of luck with your weight, and your treatment plans and any possible second opinions.

Last edited by CM57; 05-13-2018 01:08 AM. Reason: Spelling correction

Enlarged left cervical lymph node in neck on 1/9/18. Male, age 60. Had retired from working as a computer technician and a project manager for almost 38 years, on 7/1/17.
Node was removed 1/16/18 and found to have SCC P16.
Chest xray clean.
Since then, PET/CT, slight activity left parotid, possible malignancy left lingual tonsil. MRI clean.
3 endoscopies, nothing seen.
2/26/18 Larryngoscopy,primary not found.
TORS 3/23/18 lingual tonsil biopsy.,biopsy negative.
Chemo/rads started 4/18/18.
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In addition to what CM57 has advised (this may help them as well), Boost makes a very high calorie formula. When getting the most calories per swallow is important, Boost VHC has 530 calories per "can". This usually is not available of store shelves. Some pharmacies will order it specially for customers who ask. The easiest way to get it is to click on the Amazon box on the right of any page and place your order thru Amazon. Back in 2007 when I used the VHC, I paid around $16 a case. Now its about double at $34+ per case.

I cant stress enough how important it is to hold on to your weight. Patients weight loss is an early indicator of patients who are starting to struggle. During rads, patients need at the very least 2500 calories per day and 48-64 oz of water. If a patient is still losing weight and they're taking in 2500 calories then they need to up their minimum to 3000, 3500, etc. A patients intake is one of the most important things to focus on in order to get thru everything as easy as possible.

Back when I went thru rads, I tried but was not very good at tracking my calories or fluid intake and lost 65 pounds. Now, I tend to nag people about this due to all the unnecessary struggles I went thru due to not watching my intake closer. I had several hospitalizations due to becoming malnourished and dehydrated. I felt so bad I actually thought I was dying (which fortunately I wasnt). I became so ill that my son practically carried me to the car and rushed me to the hospital. He put me in a wheelchair and pushed me into my medical oncologists office (without bothering to call for an appointment) who immediately took me right back to an exam room. My doc came right in and took one look at me and admitted me on the spot. She didnt even bother taking my vitals, she knew I was in bad shape when I couldnt even hold my head up or answer her questions. I had a very difficult time of it mostly due to not having a caregiver. My son was only 17 when I got sick and my daughter was 15. Being teenagers they had a hard time watching their only parent go thru what seemed like a continuous downward spiral.

Im not sure why the facility you mentioned was not included in the list of only 49 CCCs in the US. It could be the list doesnt get updated very often or just a clerical error.



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: May 2018
Posts: 10
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Posts: 10
Thanks heaps, CM57! Very useful info. I am already using another Ensure product called Juven to help healing of the biopsy site, because the first two biopsies seemed to heal so slowly. It's expensive, so I've ordered Bulk Supplements brand plain powders from Amazon. I will be ready to support healing post-surgery, and I can save a lot of $ by mixing my own.


Kathy
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