NFR My Cancer Diagnosis and a PSA

Non-fishing related

Robert Engleheart

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Hoping to pass along some information that could be helpful to many of us, especially those over 50 (majority?). For sake of brevity I will start with the PSA, if it can be called that. I have cancer in my left tonsil and the lymph node below the angle of the jaw. I saw the head of department at UCLA Johnsoon Cancer Center who I informed me it is HPV-3 cancer which is almost epidemic among people over 50, me being the 3rd case that morning alone. It is very curable if caught early, which thankfully, mine was. But it can present in very unobtrusive ways, and progress to where it metastasizes before noticed. In my case it is 33 doses of radiation, 5/week and 6 chemotherapy sessions, 1/weekly and was told yesterday a 95-98% chance of recovery.

It was brought to my attention while camping near Mt. Shasta on June 3, 2024, while brushing my teeth in the morning I noticed my left neck at the angle of the jaw looked like an egg was deposited there. No pain, just swollen. Nearby Medical center ran blood panel and a scan with a diagnosis of infected tonsil and lymph node. Prescribed a course of antibiotics and advised if swelling didn’t go away to see an ENT specialist when I got back to town. After a second course of antibiotics which reduced the swelling but didn’t completely remove it I went through the hoops required to see a local ENT, taking me to the end of July to finally get that referral thanks to my PCP and his staff’s incompetence and ENTs being very busy in my region. Mid-August I saw an ENT who took 15 minutes to schedule a biopsy with the result being Squamous Cell Carcinoma. Decided a teaching hospital was the best option and quick search determined UCLA Johnson Cancer Center is #1 in state and top 4 in country for head and neck cancer, so that was chosen for treatment.

Here’s why it can be insidious; it can present in the cervix and vaginal areas for women, penile for men and soft, mucosal tissue in the mouth; tonsils, tongue, and related areas and anus for both sexes. In my case there was no pain or discomfort to signal trouble. If the area hadn’t become infected while I was camping at Shasta it could have been undiagnosed for some time. I just met a fellow patient who had pain in tongue and throat for 6 months and was misdiagnosed as something other other than cancer by a respected ENT at another major hospital in Southern California; when he finally came to UCLA it was diagnosed in minutes as HPV-3 cancer. He was in pain, I had none. I believe mine presented several months before early June at Shasta but as I had no pain it was ignored. Sometime in April or March I had a slight fever, runny nose etc, typical to allergies or mild cold. Tested negative for Covid but remember my lymph node was swollen very slightly, enough to feel but not noticeable.

To summarize, if you experience pain in mouth or tongue or the slightest swelling of lymph node(s) under the jaw git your azz to an ENT who is familiar with HPV-3 cancer, it is no joke. And if you have kids under 45 or grandchildren press them to get vaccinated, it’s been estimated that as much as 40% of the population is carrying HPV virus; not all variants will be carcinogenic but as my Dr said, it’s increasingly prevalent in population over 50.

I should be done before Thanksgiving and a couple months rest and recovery will hopefully see me on the water for winter steel. Meanwhile I’m living vicariously through you members reports, insights and insults 😁
 
Robert - Thanks for the candid explanation / reminder / wake up call for us all. All the best and Hope everything goes perfectly for your treatment!
 
Can't stress enough about getting kids the HPV vaccine. There's a lot of weird misinformation out there. But it's going to save lives.

Fuck cancer.


 
Thanks for sharing this, Robert. Prayers . . .
 
Excellent write -up of both highlighting the importance of managing one's health and doing the right thing for yourself.
Besides providing the well proven cancer treatments, teaching hospitals also offer the very newest treatments in the form of clinical trials being managed by cutting edge physicians willing to use them.
And absolutely everyone under age 45 should consider the HPV vaccine, it is one of the most common cancers and the general population occurrence rate continue to increase, as do most form of cancers. If over age 45, it's not as reccomended as it is assumed one has already been exposed to the virus at some time in their life.
 
Generally, radiation is not bad. But, that being said, everyone responds differently. Here's some keys to getting through it. First: Get your rest. The fatigue will build slowly, but eventually cannot be ignored and you will be hard pressed to catch up. You'll want to have energy for the chemo. Second: hydrate. Dehydration is another insidious side effect and very tough to recover if you lose it. And you'll need smart hydration. I found electrolyte supplements to be effective for my overall energy level, there's tons out there, from gatorade to fancy-ass powders. Third: Diet. Eat real food, and supplement with vitamins if necessary, B12 and D3 can't hurt in any event. And last: surround yourself with happy people and positive vibes. You're lucky, you caught this early and the prognosis is great. The treatment's tough, but you're up to it. Be happy, do things that make you happy and bring you joy and cheer. Stop with negative and angry folks. If only because they take too much energy, and you gotta save up.

Oh, and head/neck radiation can get you burns. First day, ask the techs what cream they recommend for those, get some, and start using it...again, catch-up is no good in this game.

I hope you're out casting for steelhead right soon. Good luck.
 
Robert, as others have said stay positive, and focus on yourself first! Get tons of rest!

Another really hard thing (generally for men, me) was accepting help, but take it when offered!

You got this! Prayers will be sent up for you and those around you during this trial.

CANCER SUCKS!
 
Wish you best Robert.


Dealt with it myself 25 years ago. Testicular. And now wife recently. It’s amazing (at least to
me how cavalier) the response to cancer has become (In my experience) … for example
Scheduling further tests two months later, surgery two months or more after further tests. When I had testicular cancer I had three days before I was knocked out and under the scalpel. Not much time to think about it. Plus the follow up treatment for five years was so much more rigid than my wife’s. I had check ups every three months with MRI’s and blood tests for two years then semi annual
For two years and one final at 5 year mark. They were making sure it was gone. With regards to my wife it’s more annual. Much looser. Kinda that report to us if sympatomatic again. She wasn’t sympatomatic, discovered under mammogram. Suits have ruined treatments and protocol. Just MHO.

I know lots of great advances have been made in treatment of cancer but when you have it the worse thing is sitting around for two-three months waiting (for it to spread?) for treatment Get it out of me now !!!!!!! Zapmit
Now !!!! Don’t make me wait.

Sorry for
Little tirade.
 
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Robert, thanks very much for your clear explanation.

I think you were wise to choose a teaching hospital. That message was often given to me by a very experienced doctor (who happened to be my dad). He explained that an advantage to teaching hospitals is they are accountable, since the newer docs and medical students are overseen by the experienced ones (the instructors). Also, they are teaching the most up-to-date knowledge.

I googled up a refresher on HPV, and found this excellent article, in case anyone is interested:
https://www.cancer.gov/about-cancer/causes-prevention/risk/infectious-agents/hpv-and-cancer

It certainly sounds like you are taking good care of yourself. I'll add a positive message that a friend gave to me when my daughter was going through (and beating) cancer:

"We will visualize a road that is as smooth as is humanly possible, with each step laid out before you, creating a healing pathway that will yield only the best possible outcome."
 
Bruce Dickinson of Iron Maiden went through this a decade ago. He beat it and is still fronting Iron Maiden. Gonna see him belting it out in a week!

You got this too! \m/ \m/
 
Thanks for sharing this Bob. We never know who this information might help. I'm wishing you the very best of luck during your treatment and recovery. Take care!
 
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