Greetings,

I came across this website only a few days ago. I just heard back after my second biopsy (first was inconclusive) that I'm confirmed with a cancerous mass in the base of my tongue; presumed HPV related; still waiting for the full details of the biopsy. Stage IV so it's large/advanced.

I'm quite eager to hear what advice and information you would like to give me. This all began less than two months ago. I went to the doctor complaining of pain in my ear and a noticeable lump in my neck. The lump is a lymph node and not the mass itself by the way. I also had been having trouble swallowing but didn't put it all together until the sonogram led to a CT scan which led to an MRI which warranted biopsy(s) and, well... here we are.

I'm 47, male, in decent over-all health. Drink moderately, non-smoker, carrying a few more pounds than I'd like; nothing dramatic.

My first oncologist (who performed the non-conclusive first biopsy - it was done with me fully sedated; the second was a needle sample taken through the side of my neck with me anesthetized but awake) already had recommendations for me before we knew the first biopsy was still inconclusive. They include a surgical consultation (though he feels because it's embedded in the base of my tongue I would not be a good surgical candidate) and a consultation with a radiation oncologist. With the help of my girlfriend we learned of a Photon Therapy clinic in the area (Scripps - San Diego) and I have an appointment with a doctor there as well.

To be clear, at this moment, I'm aware because of the biopsy that my mass is cancerous but still awaiting the full details. The doctors suspect it will be HPV related but this has not been confirmed. And it has been referred to as stage IV due to its size.

It's all a bit crazy but I think I'm doing OK psychologically. I'm divorced with two teenage children. The kids have not yet been told but my ex knows, my girlfriend, my parents and a few friends and co-workers. I'm holding off making a general announcement or the like until I learn more about the different treatments and perhaps make a decision - seems more hopeful that way. (Not that I'm not hopeful; I just hate giving bad news.)

OK, so how's that for a start? I'll fill in the details as they become available but the wheel's still in spin.

Paul

Paul, welcome to OCF! You have found the best site to help you get thru your battle. Stick with us and we will help you with info and support.

There are so many appointments and tests to do before starting treatments. Set up an appointment to see your dentist. You will need molds of your teeth to make flouride trays if doing rads. Also get a good dental check up with any questionable teeth pulled. You also should have a full blood work up including thyroid and testosterone counts.

Even if you would end up with a feeding tube, you still will want to swallow at least water several times per day to keep your swallowing muscles active. Believe it or not they can quickly forget when not being used daily.

Your intake must become your main priority starting right now until at the very least you hit your one year post rads anniversary. Every single day you should be taking in a minimum of 2500 calories and 48-64 oz of water. If you lead an active lifestyle and are working out you would need more, maybe even 3500 calories daily. No it is NOT too much! Your body is compromised at this time so it burns calories at an incredible rate. During recovery you will need to rebuild your body so it needs extra calories to do so. This is something you cant skimp on. Not even for one day as it quickly turns into a downward spiraling cycle which ends with malnutrition and dehydration, both are not fun.

Anyone who offers assistance to you, take down their name and number. Tell them when the time comes you need help you will let them know what they can do. You may need a hand with picking up prescriptions from the pharmacy, doing a load of laundry, helping you with light housekeeping or even driving you to treatments. Many patients lost their ability to drive due to pain meds so its a good plan to line up some helpers.

I also suggest going to a major comprehensive cancer center (CCC) for a second opinion. Below is a list of CCC's. They are the countries top hospitals to treat cancer. The CCC facilities all use a team based approach where the specialists get together so everyone is on the same page. If you cant get to a CCC, there is also a list of the top US hospitals. Look for a teaching hospital or university hospital. Find the best medical care you can and get another opinion.


CCC list

US News Best Hospitals List

Its a long road but you will get thru it. Feel free to ask us any questions you might think of. We will help you as much as possible, you're family now. Best wishes!

Hello Paul - Welcome to the family. You just picked up a bunch of new brothers and sisters who share something big in common with you. You also found perhaps the best place on the planet for helping you get through what is coming down the road. Make no mistake about it, what is coming is big, and sometimes it can be kinda scary, but it is entirely doable. Lot's of others have already been through it and came out the other end of the tunnel just fine. I'm one of them.

If it weren't for our age difference, you 47, me 61 (at time of diagnosis) our stories are virtually the same. I didn't have any lymph node involvement, but everything else about your throat (swelling, etc) is pretty much a carbon copy of mine.

You mentioned you had extra pounds right now; so did I. Many members have lots of problems eating during treatment. I had a few problems but was always able to swallow without pain. Still I lost 32 pounds over the 7 weeks of radiation treatment and another 10 after treatment ended. My weight is stable right now (about 6 months post treatment). I went into so much detail because proper nourishment and hydration are really big things during treatment, just like Christine told you above.

She told you what to do, I will tell you why you do it. Cancer and it's treatment are both hyper-metabolic processes. They both love calories. They get their nourishment before your body gets any. The old saying that a pregnant woman is eating for two, well you're eating for three. Long story short you gotta eat a lot, and that is often hard to do if your throat hurts when you swallow. There were days when I lost a whole pound each day. (Hint: if you don't already have a decent bathroom scale, go get one. My Health-o-Meter digital was less than $30 at Walmart). I'm not pushing their brand, you just don't need to spend a lot on one. Put a weight log on the bathroom door and write down your weight every day.

During treatment your nurses will be weighing you every week and if you lose too much weight in a week you will get fussed at a little. My nurse told me that once you lose 10% of your body weight you become a candidate for a PEG tube. Your goal is to avoid the PEG tube. I reached 10% weight loss on the last day of treatment, so I avoided the tube. Still my nutritionist was quite unhappy that I just kept losing weight. She even said that I showed no remorse for continuing to lose weight. She was right, I loved the new thinner look (you will too), you just can't endanger your health getting it. Do this nutrition thing wrong, lose too much weight and you end up in the hospital on IV feeding; worst thing of all your treatment stops while you're in the hospital, and that just lets cancer start winning the battle again. So, pay attention to your nutrition. I probably came too close to the line, and like I said I didn't have any eating or swallowing problems.

I've rambled on long enough. Since we're similar cases, if you want to follow along with what I went through my introduce yourself threat is titled Old B-52 Bombardier. Last time I looked it was on about page 17 of this forum. There is also an in treatment thread and now I post in the after treatment forum.

Good luck with this, you will do just fine. You can always PM me with specific questions.

take care
Tony

I sent you a PM. Look for the flashing icon near the top of the page.

Hello Paul

This is a really good site, which I only found fairly recently. It's not an easy road, but you WILL get through this. You WILL come out the other side.

Estelle xxx

Paul, sorry you had to find us. Many have been down a similar path as you but good news, you will find your journey as unique as you are. While there are a finite number of things you will experience, it may not make any sense when they happen or how intense any one part of this may be with each of us, but you will get through this and it will be easier once you start stumbling upon the side effects of treatment.

We were the same age at diagnosis with the same primary site. It's going to be tough but you have all the resources you need to make it as comfortable as possible.

Hi Paul,

Welcome and condolences! I was a bit past 70 when I was diagnosed just shy of 5 years ago. August 9th will mark 5 years from the dx.

The only symptoms I had appeared around June, '09, a feeling like an earache
tied to the lump. I went to an ENT to ask what it was, he took on look and simply said, whatever it is,you need to have it surgically removed ASAP! He then set me up with an excellent surgeon, and when the path report came back, it probably read the same as yours. She set me up with a random Medical Oncologist who tried to scare me to death. Obviously didn't work...

As with you, they couldn't find the primary for a couple of months before it was located in the base of my tongue. They first told me that I'd have to have my jaw split (the same thing they told you), but (for reasons unrelated to that, I just didn't care for the overall approach of my randomly assigned Medical Oncologist and) fired him for another who had been highly recommended by Physician friends. The second guy offered me tightly focused radiation, supplemented by a drug called Cisplatin.

Since I was already stage IV, and the lump under my jawbone had been noticeable for several years (by my friends), I (correctly) didn't expect that there was a real cure for me in the cards, there had been too much time for that little **** to cast off seeds to seek out hiding places elsewhere.

I was right, but to start with I also had 3 lymph nodes involved. The dual treatment did work as advertised, and by the end of December I was able to return to the gym. Being in shape helps your body fight this battle enormously! (And I knew that I'd be doing this the rest of my life.)

About 13 or 14 months later, the next shoe dropped, tumors in my liver. Treated these for about 8 months with chemo only, and was able to maintain my regular workouts without any ill-effect.

But the truth is that is very much like playing Whack-a-mole. Wipe out one batch, wait 90 days for a follow up scan, and BAM, another set of tumors show up. Rinse and repeat endlessly.

BTW, the Radiation/Cisplatin combo is the biggest gun in the arsenal.
Personally, I would look askance at any MO who couldn't give you a compelling reason to go another way in your initial treatment. At the least, get another opinion and ask that same question. You only have one first shot at it and you want it to score big!

You can PM me if you think I have anything to offer,

Best of luck, my new friend,

Bart

Everyone - thank you all for your help, your advice and your moral support.

I'm still waiting on the fully detailed reports from the second biopsy but I have conducted one of my consultations on Friday - the one at the new (Scripps) proton therapy clinic in San Diego. I have a consultation with surgeons at UCSD's Moores Center for Cancer Research scheduled for Monday and a consultation visit with a radiation oncologist on Thursday. Knowing now of the UCSD Moores Center's reputation as an NIMH CCC I'm going to schedule something further with them - once I've got the full biopsy report and the initial consultations - and ask for their recommendation as well.

Specific to the proton therapy, I wonder if anyone has any thoughts. My understanding is that it is fairly analogous over all to traditional 'photon' IMRT radiaton but that proton treatments can be applied to the cancer much more accurately with the upside being much less damage to healthy cells etc. surrounding it. The sort of description I was given was that IMRT shoots radiation in a tightly focused beam but does penetrate all the way through whereas proton beams are more controlled and can be 'painted' on to the target area. (This is layman speak obviously.)

Welcome Paul,

I completed Proton Therpy this past January for a recurrence in the cervical left neck on and around the carotid artery. I made a post, "Proton Therapy," in the Currently In Treatment Section of the blog, which has some information, links about Proton Therapy.

Good luck.

Consultation with an oncology surgeon at UCSD's Moores Cancer Center was very positive I thought. Although he agreed with literally everyone else I've found that surgery is not the answer here he is getting me seen by their CCC panel asap and he also is slating me for a PET scan. So I feel like at least I'm going to get the best advice possible under the circumstances which is what many of you here at the site have suggested.

I'm trying hard to stay positive on a daily basis but I'm not looking forward to having the conversation with my kids - haven't told them yet. My ex and I have agreed that we should do it together at the end of the weekend. It'll be rough.