Hi all--this is the first time I've posted, but I am not new to this board nor, unfortunately, am I new to oral cancer. I was first diagnosed in May of 2009, and found this site and learned a lot from the posts here. At that time I had a choice of surgery or radiation, opted for surgery and had a partial glossectomy & neck dissection with nodes all clear. Two years later I had a biopsy that detected a microscopic cancer and had surgery once again.

A week ago I had laser surgery to remove some leukoplakia on the floor of the mouth & side of tongue. Unexpectedly, the pathology report from that surgery identified SCC at the same site as the 2nd occurrence (very back of lateral tongue on left side). I'm going in for a PET scan on Monday and will know more then about the staging & what treatment options I have. It seems I am likely to have radiation along with surgery and/or chemo. This is the third time I've had cancer in just over 4 years and it's freaking me out quite a bit. I'm trying to keep it together and am lucky to have good insurance and the opportunity to take some extended medical leave from my work. But I could use some wisdom from all of you who have been there.

So far I have stuck with the surgery route, have been very afraid to do radiation and chemo has not been an option up to this point. The surgeries I have had have not been particularly disabling to me. I have limited function in my tongue but can eat and speak relatively normally. Just can't stick out my tongue, eat an ice cream cone, etc. The neck dissection has caused lingering soreness/stiffness in the shoulder and neck but nothing unbearable. I know that radiation and/or chemo is going to be necessary this time and would like more input from those of you who've been through it. It seems more life-changing as far as sapping your strength, drying up the salivary glands, making it impossible to eat/drink for extended periods of time.

I have been with an HMO (Kaiser) so far, dealing primarily with an ENT surgeon, and have been satisfied with their treatment. This time I feel things are more serious and would like a second opinion. I know that most people on this board recommend going to a CCC, but my insurance does not cover that. I am looking into getting a second opinion from a CCC (for example, Johns Hopkins)--does anyone have experience with that or any of the other CCC's near to DC?

Also, I've seen a lot of advice here for people to eat a lot prior to when they have to have treatment. I was 50-60 lbs overweight and have lost about 25 of that. So I still have a healthy reserve and am wondering if that advice would apply to me.

Any advice you could give me would be greatly appreciated! I just want to do whatever I can to prevent yet another recurrence.

Thanks for reading,
QuinnZ

Welcome, Quinn -- Sad to hear this cancer is dogging you, despite the great work you've done of addressing it. I hope this round you give it a TKO so you can get on with your life cancer-free!

Several OCF members have been treated at Johns Hopkins.

Eat all your favorite foods so you dont have any regrets. When I went thru rads, I lost 65 pounds. So if you are about 25 pounds overweight now, you do have a little you can lose. I still would advise you to not worry if you gain a few pounds. Try to eat well balanced, healthy meals and not just junk food. Make sure you eat anything that you enjoy that is spicy, like some Chinese or Mexican foods can be. Its best not to go into this with having food cravings as it could be several months before you are able to eat somewhat normally again.

Good luck!!!!

Hi Quinn,

Sorry to hear about the recurrence. Your right in wanting to seek a 2nd opinion at a CCC. If there's a way to seek treatment there then go that route as well.

I sought a 2nd opinion at Johns Hopkins and I ended up seeking treatment there. I'm convinced had I not, I may not be typing this response. While there are many that received excellent care outside of a CCC, I'm sure my case would have turned out much differently had I not done so.

From my first phone call, the response and attention I received has been above and beyond. They made all the arrangements, gathered all the previous records and test results and by the time I arrived for my appointment a "team" had been assembled. A MO, RO, ENT/Surgeon, Speech/Language Pathologist, Oncology Nurse/Manager, even the head of the Sidney Kimmel Cancer Center was there to greet me. I was poked and prodded more in 25 minutes than I was the entire time locally. They all knew my case up until that point and were in agreement with their recommendations for treatment.

I went home that day and did a little research on the team that was assembled. All were some of the very best and brightest in their fields. They were extremely confident that they would eradicate this beast from my body.

I can't speak highly enough of Johns Hopkins. If there's any way you can get treated there then do so! My caregiver and I are from Virginia and were fortunate enough to be put up at Hope Lodge in Baltimore during treatment.

Concerning eating.... regardless of where you're at currently with your weight, enjoy your favorite foods now while you can. Gaining a another few pounds or so prior to treatment won't do any harm. Most likely, it will be a long time before you're able to enjoy them again.

Positive thoughts and prayers

"T"

Hi Quinn, I was first diagnosed in July, '09, so we have that in common. At the time I was dx, I was already stage IV, something that I have since found from others here is that this is not all that uncommon with Oropharyngeal cancer.

I suspect that you are, indeed, in for a round of radiation with chemo as a adjunct therapy, and I also suspect that the chemo they use will be a "-platin," (platinum based compound,) either Cis(platin or Carbo(platin.)

Both of these have some unpleasant side effects, but both have the very, very desirable beneficial effect of preventing cancer cells from dividing (reproducing by cell-division) and escaping eradication by the radiation.

No matter what the case may actually turn out to be, I would focus my mind on obtaining whatever treatment option would give me the very best chance to eliminate the disease, not which one would cause me the most discomfort.

(please do not take that as a rebuke of any sort, it is merely sound survival advice!)

The unfortunate fact is that all of these life-saving treatments come at the price of some discomfort, ranging from mild to most unpleasant, but the reward of survival is generally so high as to make the cost inconsequential.

In the greater scheme of things, even two years of moderately severe discomfort, as some have experienced from radiation is more desirable than not; in that 1) uncomfortable for two years is better than dead, and 2) discomfort, unlike death, passes.

In the case of chemo, the discomfort is usually simply a memory after 60 days. In my case, Cisplatin administered only three times (concurrent with 8 weeks radiation) caused me to lose my sense of taste and made (and kept) me so nauseated that I could only keep one bottle (8 oz) of Ensure Plus (350) cal in my stomach in a day. I went from a solid, athletic 192 to an emaciated 154 in 90 days.

Sense of taste returns, slowly.

Neuropathy is a common side effect of most chemo agents, so one needs to be aware of what is going on inside your skin. Pay close attention to your fingers and toes, and to your ears (hearing) and promptly notify your lead oncologist if you notice any changes (you will.) They will likely make some change in the drugs to reduce or avoid further neuropathy.

Be alert for Tinnitus. This signals neuropathy in your hearing; and be alert for for tingling/prickly feeling or numbness in your fingers or toes.

Try to relax, remind yourself that you are taking whatever measures can be taken and thus you've done all you can; and let it go. Look around this forum, we've all been through this and are living. You will be fine, if not in an absolute sense, but in the only sense that matters. You will be.

Good luck, and focus on your good fortune in living in an era when this is no longer a death sentence!

Thanks to all for your advice and encouragement - it is a great comfort to me. I'm ready to do whatever it takes to stamp this thing out for good.

Any thoughts on clinical trials?

Hi QuinnZ,

Welcome to OCF - so sorry you have to be here!

It was 8 years ago I heard those dreaded words - you have cancer. I was treated locally initially and really like my local ENT. But when I had a recurrence in 2010 I sought additional opinions and ended up at Johns Hopkins. I've had surgery twice at Hopkins. I really love my doctor there and the treatment at Hopkins was the best.

Since you are in the DC area I would highly recommend going to Hopkins for a 2nd opinon. They are one of the top H&N cancer centers in the USA and you will have access to many clinical trials if that is the appropriate path for you to take.

Good Luck!