Support resources for families dealing with cancer and other serious illnesses

Melissa Castillo said:I need some advice—is there any kind of priority access for cancer patients when waiting for a primary care physician? It’s honestly unacceptable to have someone whose immune system has been absolutely decimated by chemo sitting in a waiting room for hours, surrounded by crowds of people coughing and sneezing right in their face. On top of that, you’ve got doctors who call in the twentieth person in line while the guy who was actually fourth when the clinic opened is still just sitting there. I'm not even exaggerating 😠 😠 😠

Look, I don't know if there's an official rule written in some handbook, but we all know how it goes—pregnant women and people with disabilities get moved to the front of the line without a second thought. So, logically, why shouldn't someone dealing with a diagnosis like this be treated with the same courtesy? At the end of the day, it really comes down to the doctor's own discretion and how they choose to run their clinic. My suggestion? Just sit down and have a straight conversation with them. Explain the situation and let them know exactly what the struggle is.

slyjackal38 said:My dear Dundo passed away on January 9th. It was absolutely heartbreaking getting that phone call at 12:25 AM. If he were still here, he would have turned 53 today.
Thank you all so much for the advice and support.
I definitely plan to stay active here and try to help everyone else by sharing everything I've learned about this sneaky disease.

I am so incredibly sorry.🙂
By staying involved and helping others in this thread, it’s almost like... your dear Dundo will live on through you!

Melissa Castillo said:I’m looking for some advice—is there any kind of priority access for cancer patients when it comes to waiting lines at a primary care doctor's office? It honestly feels wrong that someone whose immune system has been completely wrecked by chemotherapy is expected to sit in a crowded waiting room for hours, surrounded by people coughing and sneezing all over them. And then there's the issue of the doctors themselves, who might call the fourth person on the schedule the twentieth person in line, if you can believe it. 😠 😠 😠

I'm not entirely sure if a specific "fast track" exists, but we handled things similarly for my mom, specifically because of all the points you brought up. Toward the end, we switched to a different doctor—we already knew her because she had been filling in for the previous one quite often—and she was already pretty well-versed in the situation. We worked out an arrangement where we would drop off a detailed list of medications the day before, and then just swing by the next day to pick up the prescriptions.
Maybe try suggesting a similar setup or an informal agreement; the next time you go, perhaps don't bring your mother along, instead bring the latest discharge papers if you have them, and write down every single medication detail along with her full name on a sheet of paper. Patients dealing with such heavy illnesses shouldn't be subjected to unnecessary physical or mental strain in those cramped clinics, not to mention the obvious risks to their fragile health. Our doctor was even willing to do a quick home visit just to see how everything was progressing, and we never really had any trouble getting that coordinated.

slyjackal38 said:My dear husband passed away on January 9th. It was such a heavy, gut-wrenching feeling having to pick up the phone at 12:25 in the morning when they called. If he were still here, he would have turned 53 today.
I want to thank everyone for all the advice and the support you've shown me.
I fully intend to stay active here and try to help anyone else navigating this, sharing everything I've learned about how insidious this disease really is.

Please accept my deepest condolences.

Melissa Castillo said:I need some advice—is there any kind of special priority for cancer patients when waiting to see a primary care physician? It is absolutely unacceptable for someone whose immune system has been completely decimated by chemotherapy to be sitting in a waiting room for hours, surrounded by crowds of people coughing and sneezing all over them. And don't even get me started on the doctors. They’ll call the twentieth person in line before they even touch the fourth person who actually showed up on time. I am not exaggerating. 😠 😠 😠

😲 What kind of doctors act like that?! My doctors actually saw me right away when I had pneumonia and a massive fever...

slyjackal38 said:My dear husband passed away on January 9th. It was absolutely devastating getting that phone call at 12:25 AM. If he were still here, he would have been turning 53 today.
Thank you all for the advice and the support.
I fully intend to stay active here and try to help others by sharing everything I've learned about this treacherous disease over time.

Please accept my deepest, most sincere condolences! :*

slyjackal38 said:My dear husband passed away on January 9th. It was absolutely devastating to have my phone ring at such an hour, receiving that call at 12:25 AM... If he were still with us, he would have celebrated his 53rd birthday today.
I want to thank you all for the advice and the support you've shown me.
Moving forward, I fully intend to remain active here, hoping to assist anyone else by sharing everything I have learned about this insidious disease over time...

It is truly tragic that he didn't get to see his birthday😢 Please accept my deepest condolences; just hold onto the belief that you will be reunited again, perhaps celebrating a much more beautiful birthday together with smiles on your faces...

Hi everyone. I’ve been sitting here wondering about the logic—if there even is any—behind the criteria for getting a prescription for drugs like $4000. It feels incredibly arbitrary sometimes. And don't even get me started on why people who desperately need a scan on a modern machine at a major center like Mayo Clinic can't just get an appointment, but instead have to shell out their own cash for private imaging. Even for those with the means to pay, the wait times are just... well, they're exhausting. At the end of the day, it comes down to the doctor; they're the ones who decide if a specific scan is necessary by writing the referral. And honestly, if you're fighting this kind of battle, wouldn't you say that access to the best tools is absolutely essential for effective treatment?

neonpanther12 said:Hi everyone, I'm wondering what criteria determine who gets Sutent on prescription. Also, why can't people who actually need it get an exam on modern equipment at the local university hospital instead of having to pay out of pocket $4000? Even those who can afford it face long wait times. A doctor is the one who writes the referral if they deem it necessary, and of course, it should be available to anyone fighting this disease so they can receive effective treatment.

Dear neonpanther12, I honestly haven't a clue—except for what personally affected me and what I took the time to research thoroughly. My husband was on Tarcev—another incredibly expensive medication—which costs about $6.75 (cheaper than Sutent), and we kept buying it until the Secretary of Health announced that everyone who needs these high-cost drugs is entitled to them. Well, we then presented the hospital director with the findings from an oncology board meeting where it stated verbatim, "...continue with Tarcev..." Essentially, a panel of highly paid specialists decided that continuing treatment with Tarcev was necessary, and our hospital board had no choice. They had zero grounds to deny us, and within 24 hours, the medication was waiting for us at the hospital pharmacy. Of course, we provided all the required documentation and filled out every single form—but none of that is the hard part. It’s much harder to count the massive amounts of money we spent over such a long period.😠
So, what should you and your family do? Ask your doctor to provide a written opinion stating that Sutent is the recommended course of treatment. If that recommendation is positive, no one can turn you down.
Secondly—when you mention the hospital and "expensive equipment," you're likely referring to a PET scan. I know plenty of people who received that scan through their insurance, and it was genuinely necessary for them. They didn't have to wait long, either. We also asked our oncologist if there was any point in getting that scan ourselves (we would have paid for it); however, he told us—and we trust his judgment—that in my husband's case, it wouldn't make sense. He has a clearly diagnosed primary tumor being treated according to standard medical protocols that yield the best results. If you read some of the posts on this forum, you'll see that PET scan results aren't always the clearest nor do they always provide the most useful data.

Best of luck!🙂

2 brisksurfer, Melissa Kim45, brisksurfer - my mom is one of those fiercely independent, low-key types who avoids conflict at all costs. Everything was fine until she was hit with breast cancer about a month or two ago, especially since she’s obsessed with doing everything on her own (we help manage her test results and stuff, but that's about it; she just insists on consulting with doctors herself). Now she’s undergoing chemo and her white blood cell counts are frequently low. I’m constantly nagging her to eat something, and I cook nothing but her favorites just to try and boost her immune system. And then she goes to see doctors who don't give a damn about her scheduled appointment times, leaving her sitting in waiting rooms packed with people currently riding the wave of seasonal colds and lung infections. I don't know how I'll do it, but I have to talk her into some kind of compromise because the thought of her being exposed to everyone and everything absolutely terrifies me.
It infuriates me even more that she actually has to ask the doctor to hand over her chemo referral 😲 for God's sake, who do they think they are? Not long ago, she almost missed a chemo session just because of some incompetent staffer. I'm sure she isn't even the first patient they've seen with this diagnosis, so I don't get what their deal is. There have been plenty of examples like this over the last few months... it's unbelievable how many hacks and charlatans call themselves doctors these days 🙄 😠 😠

slyjackal38 said:My dear husband passed away on January 9th. It was absolutely devastating to receive that phone call at 12:25 AM. If he were still with us, he would have celebrated his 53rd birthday today.
Thank you all for the advice and the support.
I fully intend to remain active here and hope to assist others by sharing everything I’ve learned about this insidious disease over time.

I am so incredibly sorry. Please accept my deepest condolences.

I lost both of my parents to this pathetic excuse for a disease... My mom didn't even know what she was actually fighting until the very end because some incompetent GP spent months just handing out painkillers. She’d tell her it hurt, and the doctor would basically gaslight her, refusing to even write a referral because she didn't want to deal with the paperwork or the impact on insurance metrics. So, my mom had to shell out for private specialists just to figure out why she'd been in agony for an entire year. It was all too little, too late.
They’ve finally found peace, but I’m left here pulling all-nighters, playing a loop of everything that happened over and over in my head... I still see them in my dreams, mostly because they're all I have left.
You have to fight the illness itself and then turn around and fight this broken, bottom-tier healthcare system, while the administrators are busy bickering over co-pays and billing... Honestly, if I could just pack up and move to somewhere like Sweden... I'd leave this whole mess behind me for good.

Melissa Castillo said:I am seeking some counsel—is there any sort of special priority for cancer patients when waiting for an appointment with a primary care physician? It feels utterly unacceptable that someone whose immune system has been completely decimated by chemotherapy is expected to sit for hours in a waiting room, surrounded by a crowd of people coughing and sneezing directly toward them. To make matters worse, the doctors themselves seem to operate on a whim, calling the twentieth person in line instead of the fourth scheduled patient... it is truly absurd 😠 😠 😠

Regrettably, I suspect such a privilege does not exist, though it really ought to be implemented immediately given how marginalized oncology patients are in this regard. If I am not mistaken—and I could be, as I am not an expert on policy—those without private supplemental insurance often have to pay out of pocket for certain blood marker tests $28. At least, that is what my mother told me, and she has to go for blood work at least once a month; we were fortunate enough to have her supplemental coverage...

Regarding visits to the family doctor, the lines are so long that even my father, who is perfectly healthy, finds sitting there for an hour or two quite taxing, let alone my mother... It is far more practical for him to handle the appointments or coordinate via telephone, allowing us to avoid any contact between my mother and other ill patients.

As for the blood work, even when the referral is marked "urgent," the wait remains interminable, and the waiting rooms are always so crowded that we find ourselves forced to raise our voices just to ensure she is seen promptly. She could technically use the clinic at the oncology center, but that option is somewhat less appealing to her...

Ultimately, our greatest solace is that my father is by her side twenty-four hours a day; he is, unfortunately, the only one who can navigate the complexities of the medical information and fight tooth and nail for her medications, her chemo, and everything else this wretched disease brings... He encounters everything from those who simply shrug their shoulders and look away, to the few doctors who actually possess a genuine desire to help.

boldcyclist19 said:Both my parents died from this wretched disease... My mom didn't even know what she was fighting until the very end because some incompetent GP spent months just handing out painkillers. She wouldn't even believe her when she said she was in pain! Instead of writing her referrals, the doctor refused to do it just so they wouldn't have to deal with the paperwork affecting her pay. My mother had to pay out of pocket for private specialists just to figure out why she'd been hurting for an entire year... It was too late. It was pathetic.
They’re at peace now, but I lie awake at night with the whole thing playing on loop in my head... And I dream about them because they’re all I’ve got left.
You have to fight the illness and you have to fight this broken healthcare system, while they sit around arguing over co-pays... If I could just move to somewhere like Sweden... Leave this mess behind me forever.

I don't know... Every time I read anything about cancer, it says it's curable if caught early. But how are these total charlatans supposed to catch it early?!?!?! I’m looking through my father’s medical records right now... He spent over a year bouncing from one doctor to another, complaining about throat pain long before the tumor was ever found. And what did they do? They treated him with nothing but basic antibiotics and standard pills?!?!?! Then the surgeon acts shocked that he didn't show up until the tumor had already spread everywhere. I don't even know what to say...
The first CT scan that actually caught the tumor was done privately. I paid for it myself because he refused to wait any longer for a scheduled appointment in the system...😠

I forgot to mention that I'm going to TRY to get the old man into the Emergency Room at Jordan on Monday, assuming the hospital isn't completely overflowing! 😠😠
I'm honestly torn—should I just take him somewhere private to get his tests done instead? And if so, where on earth can I actually go?

Susan Ruiz76 said:Secondly—when you bring up Vinogradska Hospital and that "expensive machine"—you’re almost certainly talking about a PET scan.

What kind of machine is that even supposed to be? How on earth could a single scan cost 12 $0.00????

brisksurfer said:What kind of machine even is that? How on earth is a scan costing $12 $0.00????

Yeah, we paid that much because we went private at Vinogradska Hospital. Since we aren't from the US and didn't have the patience or time to wait for Medicare to approve everything here, we just pulled the trigger.

It’s actually a solid piece of tech. People say it's super reliable—one scan and you're done. It maps out every single change and shows exactly where everything is located.

We did a bunch of other tests before this, and the PET CT basically confirmed the same thing, though it "added" a few more spots for metastases, unfortunately.

Try to get a referral for a PET CT if you can. It’ll save you from dealing with a mountain of tiny, individual scans.

Hang in there!

😲😲😲😲Imagine being told by a doctor that you have cancer, and it looks like it’s already spread to your ovaries and uterus—that they'll do everything possible just to extend your life. Then, the very next day, my mom goes in for her checkup and gets the exact same diagnosis. She went into a coma. I guess, thank God, we both managed to pull through for now.

I guess if you listen to one experienced doctor, they suggest eating as much homemade bacon and onions as possible. It might actually help, I suppose.👍

If some "experienced" doctor actually said that... they belong in a psych ward. Stop talking nonsense.