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

mistyjackal842 said:The swallowing issue is just awful. My dad had a really hard time swallowing liquids too, though he could manage soft foods. My mom was younger at the time and could swallow almost anything, even just half a Klavocin pill. Last year, I actually had to crush my dad's antibiotics and mix them with yogurt just to get him to take them. I honestly don't get why swallowing becomes such a struggle.

I'm also stumped as to why he can't swallow—it's clearly a major struggle. I'm just waiting on the rest of the results now. They still have to read the Thorax scans (we already did the CT), and hopefully, we'll get the CT abdomen done tomorrow...
Did your dad's swallowing eventually get any better, or...?

Hey everyone,
It looks like it's Mom's turn now, following after my dad.

She’s been struggling with swallowing issues and this tightness on the right side of her neck for quite a while now.
The LOM clinic gave her some antibiotics and sent her off for an ultrasound and an ENT consult.
The ultrasound showed her thyroid is normal size but has some nodules, plus there's an enlarged lymph node on the right side.
According to them, nothing seems alarming, though they did suggest a biopsy for both the thyroid nodules and the lymph node.
She went in for the biopsy today, but they only actually biopsied the thyroid part.
When asked about the lymph node, they basically just said there wasn't anything there worth biopsying.

As for the ENT, they "urgently scheduled" her for August 28th.

Swallowing is getting more painful by the day. She’s feeling this pressure and pain on the right and front sides of her throat.
Her voice hasn't gone hoarse, though.

I'm honestly pretty scared; I can't help but worry this might be some kind of throat cancer or something similar.

Does anyone know which diagnostic methods are typically used for that kind of tumor? And does anyone have recommendations for a good private ENT in NYC where we could get things moving?
I just want to get ahead of it if it's something minor, because if it really is something serious, we can't afford to wait months for an ENT appointment.
I've seen people mentioning ENT visits and fiberendoscopy, and then others talking about MRIs or CT scans.

Maybe we should start by getting a second opinion via ultrasound, since I don't really get how they couldn't see something if it's large enough to cause this much trouble with swallowing.

wiredmarlin3,

My dad struggled with swallowing for a long time... he kept it from us until he just couldn't hide it anymore. As it got harder to swallow and eat, he started losing weight, and fast. Then the headaches started, mostly around the ear... unfortunately, all classic symptoms of oral cavity cancer. 😢

During that first exam, an ENT specialist used a fiberoscopy and saw it immediately. It was large enough that they could confirm it was cancer right then and there.

The next day, they rushed him through an MS CT of his neck, chest, and brain... just to confirm what they already knew. 😢

We did everything at the hospital... so I don't really have any recommendations for private clinics.

I suppose an ultrasound might pick something up if there’s a change, but honestly, a fiberoscopy is the standard first step for anything involving the throat or nose...
On that first day, the doctor told us that changes in the throat, mouth, or tongue are usually obvious during that initial ENT exam. So... I'm keeping my fingers crossed that it's nothing serious for your mom.

crimsoncanyon3 said:Sarcoma pain in your leg shouldn't be spreading elsewhere—there’s just no way for that to happen. It’s entirely possible that what you're feeling is just a byproduct of fear or stress, but honestly, if the pain is consistently hitting the exact same spot, you really ought to get some imaging done. You need to rule out any other underlying issues, like the unfortunate possibility of the disease spreading.
Honestly, it’s never a bad idea to read up more on sarcomas. Soft tissue sarcomas are essentially a massive umbrella term for a bunch of different types of cancer that start in the connective tissues—things like muscle, fat, nerves, blood vessels, or even deep tissue in your bones. It’s not just one single disease; it’s more like a collection of various rare cancers that behave differently depending on where they pop up. Because these tumors can grow almost anywhere in the body, they can be pretty tricky to catch early. They don't always show up as a hard lump right away, which is why regular check-ups are so important. If you notice something unusual, like a swelling that isn't going away or a bump that feels different from what you're used to, you definitely shouldn't ignore it. Diagnosis usually involves a mix of tools. Doctors often start with imaging, like an MRI or a CT scan, to see exactly where the mass is located and how much it's affecting the surrounding area. Once they have a clear picture, the gold standard for knowing exactly what we're dealing with is a biopsy. That’s when they take a small sample of the tissue to look at under a microscope to figure out the specific subtype. Treatment isn't one-size-fits-all either. Depending on the type of sarcoma, its location, and how aggressive it is, a medical team might recommend surgery, radiation, chemotherapy, or sometimes a combination of all three. The goal is always to remove the tumor entirely while making sure the patient stays as healthy as possible during the process. It’s a lot to wrap your head around, but understanding that "sarcoma" is a broad category helps make sense of why treatments vary so much from person to person.

Thanks for getting back to me.
The pain keeps popping up in the exact same spot, and honestly, that's what's really starting to worry me.
I know I’m fully aware that after everything I've been through, I'm starting to turn into a total hypochondriac, but I really wish I could just get a scan done to finally put these fears to rest.
Thanks for the link, too. I went ahead and read through it.

shadowbison75 Thanks for getting back to me.. I guess we'll go ahead and schedule another ultrasound, then just wait to hear what the ENT says.

I have another question for shadowbison75. If things take a turn for the worse with a diagnosis, where did your dad get his treatment if we're looking at Washington, D.C.? Since that's basically where we're heading.
It's just like everyone else who’s been stuck in this exact same spot.
Does anyone have a recommendation on where to go or which specialist to see in D.C.?

I guess you might wonder why I'm asking, and honestly, why I'm so terrified...
With my dad, everything just went sideways from the very beginning. It started with him being mocked by the staff at the local hospital during rounds—they actually joked that he was "just trying to be sick" when he was perfectly fine. Well, once they finally ordered an MRI, all that laughing stopped pretty quickly.
Then there was the mess of them sending him to a trauma surgeon instead of neurosurgery, and eventually, even picking an oncologist felt like a complete and utter failure.
After a few failed rounds of chemo
(he’d do four cycles of one, then they’d switch to another because apparently the first wasn't working), they basically just gave up on him or ignored him entirely. They only ever bothered with palliative radiation whenever he complained about the pain becoming unbearable...
After I practically begged them to admit him to the hospital in month 4 to run some tests—like a CT or an MRI, whatever was necessary, since his condition had spiraled so badly in the two weeks following his last radiation session—all I got was, "Well, that's just how this disease works; have him come back in month 8 for a checkup." (Even though they knew he'd be away on vacation then and wouldn't be able to make it.) So, that follow-up really shouldn't have happened until month 9.
My dad never even made it to that appointment.

wiredmarlin3 said:One more thing for shadowbison75... If things take a turn for the worse with the diagnosis, where did your dad get his treatment if we're looking at the Washington, D.C. area? We tend to gravitate there...
Just like everyone else who found themselves in this same position...
Any recommendations for where to go or who to see in NYC?

Can't say I have any experience with Washington, D.C.... dealt with treatment in San Francisco, though the radiation was done up in Seattle since the San Francisco hospital works directly with them on that... they handle the chemo there...

Everything went incredibly fast with Dad... honestly, nothing to complain about regarding the doctors. For instance, he had an emergency ENT consult on Sunday, and they told him right then that he’d be admitted to the hospital the next day to start the next steps, like the CT scan and getting a tracheostomy installed...
He got an appointment for his radiation in Seattle pretty quickly too...

Does anyone have recommendations on which hospital in NYC I should go to for stomach cancer? Thanks!

Hey everyone,
I have to say, reading through all the advice on this Reddit has been such a lifeline for me, but I’m really hoping to hear more from you guys... My mom was diagnosed with lung cancer last fall—actually, it was two different types, adenocarcinoma and small cell carcinoma. She went through surgery and finished four cycles of chemo, and for a while, her lungs looked totally clear. But then, about five months in, they spotted something on her liver... so we were stuck in this waiting game, then they wanted a biopsy, and after a whole lot of back-and-forth nonsense last week, she finally had the biopsy done. Now we’re just sitting here waiting on the results so they can figure out the next round of chemo.

The thing that's really eating at me is that everyone keeps telling me her liver is crawling with metastases, acting like it’s game over. They talk like the liver being involved is the absolute worst-case scenario, yet they spent all that time just "waiting to see" before doing anything... I’ve seen so many inspiring stories on this Reddit, so if anyone has had a positive experience, please, please share some advice—how can I make things easier for her, what specific questions should I be asking the doctors, who do I need to push harder, or even just what extra supplies or things should I pick up for her...
She’s actually holding up pretty well physically, but she is absolutely terrified, especially since every time they run a CT scan, it seems like there are even more metastases than the week before... and meanwhile, we’re still just stuck waiting on biopsy results and everything else...

Thanks so much, everyone!

Hey everyone! My 9-year-old daughter was diagnosed with Lyme disease and mono back in June, which landed her in the hospital for a bit. Everything seemed fine then, except for an enlarged spleen.
We were supposed to head in for a follow-up now in September, but since she’s been sleeping so much, barely eating, and dealing with headaches, we ended up taking her straight to the ER. After the blood work came back, they kept her admitted. Her white cell count is at 1—so her immune system is totally trashed right now—and her platelets and red blood cells are low too. Her liver enzymes are high, and her liver and spleen are still enlarged, plus she has a UTI. They did a bone marrow biopsy the day before yesterday, and we're still just sitting here waiting on results. She seems okay, though—she's eating more, and physically, both her pain levels and blood counts look a tiny bit better. Since they're considering the possibility of a blood disorder (like leukemia or whatever), does anyone know how long these results actually take? They told us the day before yesterday it would be ready by Friday, but today they're saying they have no clue when it'll be done. Only one parent is allowed in to visit, so we're just stuck here, super worried—honestly, terrified. The doctor mentioned she doesn't think it's leukemia, but we're still freaking out. Does anyone know how long the wait usually is, or what else they might be looking for with the bone marrow biopsy? And is it possible all of this is still just lingering from the Lyme and mono? Thanks in advance.

Hey everyone,
My mom was diagnosed with ampullary adenocarcinoma last year. She also beat Non-Hodgkin lymphoma eight years ago, which was a total success.
She’s gone through seven rounds of chemo in total. After the first four cycles, things actually looked stable—even her tumor markers were dropping—so they pushed ahead with three more. But then the latest CT showed the disease is progressing again. To make matters worse, there’s metastasis in her liver. We haven't been able to get her to the oncologist because she's been dealing with diarrhea for four days now; she can barely eat, though she's staying hydrated. I’m at my wit's end here. I don't live with her—I have my own family to look after.
She’s 72, and honestly, I can't help but think she would still be here if this disease hadn't hit her.
I know there isn't a cure, and it kills me to see her looking so frail and in so much pain. She’s dropped 20 pounds. She actually asks me not to come by every single day because she thinks I need to focus on my own family. I feel terrible about it—the stress is overwhelming, and I just want to break down and cry.

Hello, everyone. For about six months, my father has been struggling with pain in his tailbone and bones. Initially, everything was attributed to sciatica, so he went through physical therapy. He also had two MRIs, and according to those, everything seemed fine.
He recently sought a private consultation regarding his spine, and the doctor now suspects secondary bone cancer and bone marrow involvement. His tumor markers came back elevated, and an X-ray of his lungs shows a shadow. He will undergo a PET/CT scan soon. Given his history as a smoker, combined with the lung shadow and high markers, I suspect this might be primary lung cancer that has metastasized to the bone. My father is 60 years old.
Is there any hope once it has reached the bones? What steps can we take? People generally say that once you start feeling pain and metastasis occurs, it’s essentially over. It is difficult enough watching him suffer, but it is even harder to face the thought that I should try to enjoy his company while he feels "okay," knowing things will inevitably worsen.
What is the next move? Should we look into private hospitals? Is radiation surgery an option? Vitamins? Any recommendations or experiences—positive or negative—would be greatly appreciated.

Rachel Gray21 said:Hi everyone. My dad struggled for about six months with vision issues and bone pain. Everything was just blamed on sciatica, so he was sent for physical therapy... He did two MRI scans and they said everything looked fine.
Then he went for a private spinal consultation, and the doctor mentioned he suspects secondary bone cancer and bone marrow involvement. They ran his tumor markers, and they’re elevated. His chest X-ray shows a shadow. He’ll be getting a PET/CT soon. Given that he’s a smoker, combined with the lung shadow and those high markers, I suspect it’s primary lung cancer that has already metastasized to the bone. My dad is 60.
Is there any hope once it hits the bones? What can actually be done? People usually say that once you start feeling pain and metastasis sets in, it's game over. It’s brutal watching him in pain, and it’s even harder knowing I’m supposed to just enjoy these "good" moments with him because things are only going to get worse.
What’s the next move? Go private at a hospital or what? Radiation therapy? Vitamins? Any recommendations or experiences—positive or negative—would be greatly appreciated.

You probably have some answers by now, but I’ll leave this here for anyone else following this thread.
Metastatic disease is a heavy hand to play. Once metastases appear, we aren't really talking about a cure anymore; we’re talking about extending quality of life by keeping the disease under control.
Regarding lung cancer—specifically small cell lung cancer, which is common among smokers—bone metastases are actually quite responsive to radiation, and that's usually how they manage them. With this type of cancer, the real nightmare is when it hits the liver or the brain (though radiation helps there too), and sometimes it all happens at once.
The harsh reality is that by the time this disease is caught, many patients are already at the metastatic stage, and it moves fast. When it's caught early, it can often be treated successfully.

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Benjamin Smith81 said:Hi everyone. My 9-year-old daughter was diagnosed with Lyme disease and mono back in June, which landed her in the hospital. Everything seemed fine except for an enlarged spleen.

We were supposed to go in for a follow-up now in September, but since she started sleeping constantly, lost her appetite, and developed headaches, we rushed her to the ER instead. After the blood work came back, they admitted her. Her white blood cell count is at 1 (her immune system is completely trashed), her platelets are low, her red blood cells are low, her liver enzymes are high, and both her liver and spleen are still enlarged. She also has a UTI. They performed a bone marrow biopsy the day before yesterday, and we're still waiting on the results. Physically, she’s doing okay—she's eating more, and her pain levels and blood counts have improved slightly. Since the doctors are considering a blood disorder (like leukemia or something similar), does anyone know how long these results usually take? They told us the day before yesterday it would be ready by Friday, but today they're saying they don't know when it will be done. Only one parent is allowed to visit, and honestly, we are terrified. The doctor mentioned she doesn't think it's leukemia, but we're still living in fear. Does anyone know the typical wait time for these tests, what else they might look for in a bone marrow biopsy, and is it possible all of this is still just lingering effects from the Lyme and mono? Thanks in advance.

It's been a while since you last posted.
How is your little girl doing? What did the final diagnosis end up being?

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The PET/CT scan revealed metastases in his liver, pancreas, kidneys, and bones. I won't even mention that they had to take biopsies three separate times just to identify the specific cancer type, which cost us about three weeks of precious time.
It’s a neuroendocrine carcinoma, and in his case, it's aggressive. Apparently, it's rare. Chemotherapy might be the only option left. We checked privately for radiosurgery at Saint Valentine, but they said he isn't a candidate because the disease has spread too far.
Since starting chemo, his bone pain has lessened slightly, but he is incredibly weak. He can't sleep at night; instead, he naps for half an hour while sitting up. It's as if he's lost his voice... I am terrified to even think about what lies ahead for us. ☹️

/B]

Angela Wright said:You have likely figured much of this out by now, but I'll leave this here for others to see.
Metastatic disease is a difficult reality to face. Once metastases appear, we generally stop talking about a cure and start focusing on maintaining quality of life by keeping the disease under control.
Regarding lung cancer—specifically small cell lung cancer, which primarily affects smokers—bone metastases usually respond quite well to radiation. The bigger issue with that type of cancer is when it spreads to the liver or brain (though radiation can help there as well), and sometimes everything hits all at once.
The harsh reality is that by the time this disease is detected, many patients are already in the metastatic stage, and it progresses rapidly. Those caught early can often be successfully treated.

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Man, I am so incredibly sorry.
I’m really hoping the chemo can knock this thing down enough that radiation becomes a viable option to help manage things.
Just stay locked in on that goal right now and make sure to soak up every single high-quality moment you two can get together.
Sending all the strength in the universe your way! 🙂

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Hello, I’m joining this group—unfortunately, I find myself here too. It's due to my mother's situation (she's 83) and some potential cancer she might be facing. We are based in NYC. I’ll get into the specifics in a moment, but for now, it really boils down to one main question:

– which oncologist in NYC (private or otherwise) is worth seeing if we already have radiology results (an MRI) suggesting a malignant tumor? It likely points to metastatic changes in the vertebrae, and the primary tumor might (possibly) be from the breast. Essentially, I need a recommendation for a solid oncologist who can confirm the diagnosis (or direct us toward further testing before a final call) and then explain the prognosis and available options.

I need to take action; I can't just sit around watching everyone else stall. With the holidays coming up, nobody seems to be at the hospitals.

To give you more context... over the last few months, Mom has had trouble walking and her lower back has been hurting. We went to a pain management clinic, and they insisted on seeing an MRI of her lumbar spine before they would even address the pain. To avoid any delays, we went ahead and had the MRI done privately.

The scan was done about a week ago at a private imaging center using a 3T machine with contrast, focusing on the lumbar spine. The results showed (among other things) "fresh compressive fractures in the L1 and L2 vertebral bodies, suggesting intraosseous, secondary propagation of a primary process (breast?)" and recommended seeing an oncologist immediately. As I understand it, this would mean bone cancer—specifically metastatic bone cancer that started somewhere else, perhaps the breast.

So, the first question, as I mentioned—who should we see? Does anyone have recommendations for a good oncologist? Is it better to go private or wait for the hospital queue? How long is the typical wait for an oncologist when using a referral through Medicare? And specifically, which private oncologist is actually worth the investment?

My second question—since certain family members are reacting this way—is whether there is any "sense" in doing anything at all. Mom is 83, and she’s dealing with the usual age-related issues (diabetes, heart problems, blood pressure)—so they're telling me: maybe we should look into palliative care or hospice right away (even though we don't have a confirmed diagnosis yet). Mom, for her part, understands what the diagnosis might be and is handling it okay, though she might not fully realize how much pain this could eventually cause... So, my second question is really this: what are your experiences or insights regarding treatment and general management for malignant tumors in the elderly (80+)? I'm not talking about a "cure," but rather about stopping the spread, making these final years more comfortable, and everything related to that.

I am sorry to hear about your mother. In my opinion, nobody can say anything definitive without a PET/CT scan, and an oncologist should be the one to recommend that. If you go through Medicare, the wait for a PET/CT can easily be at least 3 to 5 weeks—and we aren't even from NYC. We ended up paying out of pocket at a private clinic. After that, I personally sent inquiries to radiation oncology specialists in Saint Valentine and the Anova Clinic, as they are considered top-tier for this kind of work. Those are the two facilities I would suggest. But regardless, no one will make a move without the PET/CT and the biopsy results first.
Best of luck to you...

[OTE=graniteseal2;96075549]Greetings. I’m joining you here; unfortunately, I find myself in the exact same position. It’s due to my mother’s situation (she’s 83) and a potential cancer diagnosis. We are based in NYC. I will write more details below, but for now, it boils down to one main question:

– which oncologist in NYC is worth seeing privately (or generally) if we already have radiological findings (an MRI) suggesting a malignant tumor? It likely points to metastatic changes in the vertebrae, and the primary tumor might stem from the breast. Essentially, I need a recommendation for a solid oncologist who can establish a diagnosis (or direct us to further testing before a final diagnosis) and then explain the prognosis and available options.

I need to take action; I can't just sit around watching everyone stall. With the holiday season upon us, the hospitals are practically empty.

To give you more context: over the last few months, Mom has had difficulty walking and has been experiencing back pain. We went to a pain management clinic, and they insisted on seeing an MRI of her lumbar spine before they could treat the pain. To avoid any delays, we had the MRI done privately.

The scan was performed about a week ago at a private imaging center using a 3T machine with contrast, focusing on the lumbar spine. The results showed (among other things) "fresh compressive fractures in the L1 and L2 vertebral bodies, suggesting intraosseous, secondary propagation of a primary process (possibly breast?)" and recommended an immediate oncological consultation. As I understand it, this would be bone cancer—specifically metastatic bone cancer originating elsewhere, perhaps the breast.

So, the first question, as I mentioned: who should we see? Does anyone have recommendations for a reliable oncologist? Should we go private or wait for the hospital queue? How long is the typical wait for an oncologist via a Medicare referral? Which private oncologist is actually worth the investment?

The second question—since certain family members are reacting this way—is whether there is any "point" in pursuing all of this. Mom is 83, and she deals with the usual age-related issues (diabetes, heart condition, blood pressure). Some relatives are telling me we should look into palliative care or a hospice immediately (even though we don't have a confirmed diagnosis yet). Mom herself understands what the diagnosis might be and is handling it well, though she may not realize how much pain this could ultimately cause. So, my second question is: what are your experiences or insights regarding treating malignant tumors in the elderly (80+)? I am not talking about a "cure," but rather about halting the progression of the disease and making these final years as comfortable as possible.

@Anthony Hernandez47, thanks a lot. I went ahead and ordered a two-week supply of Rib for my mom to start with—just to get things moving. Maybe I'll manage to find some kind of "connection" later on for the public hospitals... everyone seems to pull strings like that, so I suppose it's the only way left. Also, if it turns out oncologists really do insist on requesting a PET/CT first—it might actually be faster (or just better) to just pay for the PET/CT privately.

He finished his chemotherapy session on Wednesday. Dad’s legs are swollen all the way up past his knees now. It's awful. He refuses to go to the ER, though. He's just being stubborn... He’s taking Lasix, but he hasn't been able to urinate. Sometimes he hallucinates seeing bees and things like that... probably just exhaustion from months of insomnia, or maybe a side effect of the medication. Things look quite grim, and I fear this might be the end... Or perhaps the chemo was just too much for him to handle.☹️