Support for families dealing with cancer and other serious illnesses (Part II)

shadowbison75 said:They ran a CT scan today. To be honest, from my perspective as a layman, I’ve got a nagging feeling that things are looking a lot worse than what the specialist concluded after their physical exam.😢

Merck produces Erbitux, which is currently indicated for wild-type colorectal cancer, but if you dig into the clinical studies, it actually shows even more impressive results for head and neck cancers. Do yourself a favor: go ahead and Google it, then sit down with your oncologist to see what they have to say about that specific mutation.
Don't go being all negative! There’s always a silver lining if you look hard enough.

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shadowbison75 said:I wanted to check in with some updates on my dad’s condition... unfortunately, it isn't looking good.

The tumor is too large to operate on right now and they're planning to go with either radiation or chemo—they haven't settled on the specific combination yet.

They're going to insert a feeding tube and perform a tracheotomy either today or tomorrow.

I’ve been trying so hard to stay positive these past few days, but honestly, I'm just feeling completely devastated and drained right now...

The radiation will almost certainly be aimed at shrinking that tumor down enough to make surgery an option.
We keep fighting. Life is nothing if not a series of ups and downs, and this is no different. It’ll get better!

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Angela Wright said:The radiation is definitely aimed at shrinking the tumor down enough to make surgery an option.
Just gotta keep fighting. Life is nothing but ups and downs... this is no different. It’ll get better eventually.

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What are the actual odds of surviving on radiation alone?
Is it just buying a little more time, or is there a chance the tumor actually stabilizes...

Radiation therapy works wonders for oral cancers, so it’s pretty much the standard go-to move here. I’m still trying to wrap my head around whether this tumor is actually way bigger than those two centimeters they mentioned, or if it’s just sitting right on top of those critical nerves—either way, radiation should definitely help shrink it down. The big win here is tissue preservation, which I assume is exactly what the surgeons are aiming for. If they can manage to save the swallowing reflex, the patient’s quality of life is going to be night and day better. But there's that dark cloud I was worrying about earlier—those nerves at the base of the tongue that control swallowing. If the surgeon has to cut through them to get the tumor out, the patient could end up needing a nasogastric tube for the rest of their life.

Eric Newman75 said:Radiation therapy works well for oral cancers, so it’s a standard approach. I can't tell if the tumor is way bigger than those two centimeters mentioned or if it's sitting right on top of critical nerves, but radiation should shrink it down. Surgeons are likely aiming to save tissue, which would be a major win... if they can preserve the swallowing reflex, the patient's quality of life improves drastically. But there's that catch I mentioned—there are nerves at the base of the tongue that control swallowing. If surgery cuts through them, the patient is stuck with a nasogastric tube for life.

Yeah, it's already more than 2 cm: "...AP diameter measures 5 cm, LL measures 4.5 cm." (CT scan results) 😢

Mine was about four by five by one centimeter—just enough for them to classify it as Stage III, whether the lymph nodes were involved or not. But looking back at what I read on another thread, it seems there’s metastasis in the neck too. That’s definitely not a great sign, though we aren't talking about Stage IV yet. Usually, once you hit distant metastasis, it means the lungs have been hit first—it's the shortest path for the cancer to travel—and then it spreads to other organs. That’s the final, most terminal stage. But until that happens, you fight. You do absolutely everything in your power to give the patient a fighting chance. Between radiation and surgery, this is far from a lost cause. We all have to stay hopeful and believe in a recovery.

The last line of the CT report says: several pathological lymph nodes were noted in the 2nd and 3rd regions on the left, showing central necrosis, measuring up to 26x13 mm.

Neck dissection combined with radiation should handle the issue, so there's really no need to panic. My dad is going to need physical therapy afterward; the neck area is just so packed with veins and nerves that any kind of surgery carries real risks. You've got the Vagus nerve—the twelfth cranial nerve—which is responsible for things like heart rate, lung function, and digestion. Then there's the accessory nerve, which controls the sternocleidomastoid and trapezius muscles; if that gets cut, even lifting your arm above your head can become difficult or impossible. Plus, you have the branches of the facial nerve managing your facial muscles and all that. The actual risks and fallout from a procedure like this depend entirely on how much nerve function is affected; a dropped shoulder is what happens if the accessory nerve is hit, while hoarseness or trouble swallowing comes from Vagus damage. An injured facial nerve might lead to issues with opening your mouth, for example. I’m laying all this out beforehand just to emphasize that, based on my own experience, none of this is insurmountable, even though these are definitely unwanted complications. The bottom line is staying alive, and that only happens if the cancer is completely wiped out using every tool available. Whatever the doctors tell you, listen to them.

I’m wishing you a lot of luck, obviously.

Eric Newman75, THANK YOU, THANK YOU, and thanks again.

I really value every word and bit of advice shared here. I find myself going back to every single post, reading the responses over and over...

Honestly, hearing they won't perform the surgery was a gut punch. It’s like the surgery was the only thing keeping hope alive. Now, radiation just feels like a losing battle...

No, that’s just not how it works. None of the oncologists I know—and trust me, I know a lot of them—would ever just write off a patient like that. They’d fight for every possible option, and in this specific case, there really is a legitimate chance for things to turn around. The plan is to use radiation to shrink the tumor and dial back the pain, which then gives the surgical team a much clearer path forward. It’s not just about cutting out the cancer, either; they’ll be working on tissue reconstruction too, all to make sure the patient can actually get back to a decent quality of life.

Just got a quick update from the doctor on duty. She didn't sugarcoat it... the tumor is too large and has spread too much to be operated on.

Tomorrow they’re doing a tracheotomy, putting in a gastrostomy tube, and taking biopsies.
Once those results are back, they'll decide on some combination of "treatment"—chemo or radiation—but he’s already so weak.

Not sure how much time we actually have left, but I'm not holding my breath...
It feels like they're just trying to make him comfortable now. They aren't expecting a recovery...

Which hospital are we talking about exactly? And what’s their track record like—do those doctors actually have much experience handling the heavy-duty, high-stakes cases?

Pula Hospital.
Not really sure about their specific experience, though I hear the doctors over there get a lot of praise...
Patients seem to have nothing but good things to say about ENT.

Look, I’m not questioning their skills, but when you're in the middle of these high-stakes, heavy-duty surgeries, it really comes down to how much muscle memory and routine they have under pressure.

Is there any way at all to get his father transferred to Washington, D.C.? Or even just send the test results over to Professor Alexandra Milenović, the head of Neurosurgery at the Mayo Clinic? If she gives the green light, then we know it’s actually doable. I don't want to feed you guys false hope, but you've gotta exhaust every single option. Honestly, as far as surgeons go, I don't know if anyone else tops that crew. They're basically wizards.

It’s only his fourth day in the hospital... maybe once he's discharged after these procedures and we actually see the results, we can start thinking about it. We don't have any of the test results on hand since he was admitted immediately following the exam.

Dad finally got his Transtec patches. I’m wondering if it’s okay to apply them if he was taking other pain meds until last night? I really want to check with his oncologist, but getting hold of him is basically impossible right now.

Morgan Wilson8 said:Dad finally received his Transtec patches. I’m wondering if we can apply them even if he was taking other pain medications until last night? I'd love to run this by his oncologist, but getting an appointment with him right now feels nearly impossible.

It’s perfectly fine. Since the patches don't actually start kicking in until about 12 hours after you apply them, you can continue using his current pain relief during that initial window while waiting for the patch to take effect.

“The previous analgesic therapy should be maintained at the same dosage during the first 12 hours after switching to Transtec, along with appropriate fast-acting analgesics as needed during the subsequent 12 hours.”

Hey there, sending strength to everyone out there fighting their own battles or watching their loved ones go through the ringer with illness...
I often find myself thinking about how much this community helped me back in the day, even though I haven't been active here for a while. Honestly, it feels like it’s been over a decade since then—I totally lost track of the years... Back then, my mom was going through chemo after being diagnosed with Stage 3 colon cancer. She’s doing great now, she’s alive! And she’s holding up really well at 78 years old. 🙂
Sadly, my husband’s father had a similar diagnosis—actually, his was caught earlier, at Stage 2—and he didn't make it a few years later. I guess it could have been luck, or maybe just a difference in temperament... my mom is a completely different person and made massive changes to her diet and lifestyle right after her diagnosis... or who knows, maybe it was something else entirely.

Since genetics play such a huge role in colon cancer, and my husband looks just like his dad (he's got that same foodie build), I'm back here again...
This time, he was a little late for his check-up—well, the second time he missed one, actually—and a polyp has progressed a bit (it's carcinoma in situ now).
There’s been a lot of other chaos too (like picking the wrong surgeon last summer because we were just trying to speed things up, but I'll save the rant about that guy for another time—if anyone is planning on surgery at the local hospital near us with Dr. T, based on our experience, just say NO).
To make a long story short, my husband is currently waiting for a surgery date at the Mayo Clinic in Washington, D.C. He’s been waiting for three months already. They keep repeating tests—he’s had three colonoscopies, and next week he’s having a fourth (!), plus they've taken two biopsies already... but still no surgery date.
I get that there are more urgent cases out there, but if anyone here is familiar with how things run at the Mayo Clinic—is it normal for the wait to be this long?

I’m honestly just relieved to hear your mom is doing okay. I don't have much experience with what you're going through specifically, but I certainly went through my fair share of heartache while my own parents were sick... and looking back, some of those moments were just devastating. Both of my parents were in the medical field—doctors. My mom was from Washington, D.C., though my dad wasn't. I still carry this heavy feeling of regret that we didn't take her to Austria back in 2013; my dad actually had a connection with a specialist there. Here at home, it felt like total indifference most of the time. There was one young surgeon who was truly wonderful and incredibly honest, but even he was actually a foreigner. When I ended up filing a formal complaint regarding my mother's care, they really held it against me. I guess I just created more complications for myself, especially since when my dad fell ill, they wouldn't even admit him because of those residency requirements. If I could offer any advice, it would be this: maybe don't spend too much energy complaining about things. You probably won't change anything, and it might just make your own life harder. Still, I felt like I owed it to my mom to write that letter... she was only 68, after all. But the hardest part of everything was how quickly my dad's health declined; losing my mom hit him so hard, even though I tried my absolute best to be right by his side every single moment.

Hello everyone. I have personally navigated many challenges within our healthcare system, both for myself and for my parents, who have sadly both passed away. In my experience, long wait times are unfortunately quite standard—primarily due to staffing shortages and equipment deficits, followed by frequent organizational issues. However, the most difficult part of the entire ordeal is the total lack of communication; you aren't given any information, there is nobody to consult or talk to, and you feel completely left to fend for yourself, relying solely on the internet and personal connections.

Regarding my husband, since they seem to be running tests constantly, I am trying to find comfort in the hope that this indicates they are actively monitoring him and have determined his situation isn't an immediate emergency.

On a separate note, I have three beautiful wigs left from my mother—blonde hair that falls just below the chin, two of which are brand new. If you happen to know anyone who might need them, please let me know. I also have other medical supplies available, such as pressure relief mattresses and a walker, all of which are in very good condition.