Resources and support for families dealing with cancer and serious illness

Hey everyone,
Here’s my take on things:
I was diagnosed with testicular cancer (on the right side), and they removed it 13 days ago. The surgery went down at the Mayo Clinic, performed by Dr. Castellan. Honestly, the doctors just cycle in and out—they don't say anything concrete. It’s the exact SAME thing every single day—absolutely nothing. I’ve been sitting here waiting for my results, but they haven't arrived—it makes zero sense to me how two weeks can pass without a single word regarding the CT scan or the markers, and then I'm told I have to wait until the third week because they're "too busy." And what if I don't have that kind of time?
Wouldn't it be more decent if they just told me to go get it done privately and then follow up once I had the results? Or better yet, send me somewhere where I won't be stuck waiting three weeks—or who knows how long... this kind of attitude toward patients is irresponsible and dangerous.

Scott Kelly3 said:Hey everyone,
Here’s my situation:
I was diagnosed with testicular cancer (right side), and it was removed 13 days ago. The surgery went down at the Mayo Clinic, performed by Dr. Castellan. Most of the time, doctors just drift in and out without actually saying anything meaningful. It’s the exact SAME thing every single day—total silence. I’ve been waiting on my results, but nothing has come through. It makes zero sense to me how two weeks can pass without a single word regarding the CT scan or the markers, and then they have the nerve to tell me I’ll have to wait a third week because they're "busy." What if I don't have three weeks left?
Wouldn't it be more decent if they just told me to get it handled privately and then check back in once I had the results? Or better yet, send me somewhere where I won't be stuck waiting for three weeks or who knows how much longer... this kind of attitude toward patients is irresponsible and dangerous.

You should be getting the pathology report along with those CT scans and markers. Maybe the radiologist is on vacation and nobody is around to read the CT,🙄 it happens. Or maybe they just screw up the filing, like shoving your image into someone else's folder, and then it takes days to track it down. My mom didn't get her MRI results for five months because some woman went to look at her own scans and realized someone else's imaging was mixed in with hers.
I know you need this info more than anything right now, but you need to be a bit more aggressive and direct. At your next appointment, demand a straight answer. In my experience, the agitators are the ones who always get what they need, even if the doctors and nurses roll their eyes at them. But hey, whatever—it's your life on the line, isn't it?😠
Fighter, fight!!!🙂

Melissa Kim45 said:...

Just take it easy and keep pushing forward with some positive vibes in your head.🙂

Alright, so starting today, I'm back on the "celeston" again—not exactly thrilled about it, but honestly, my hair always grows so much better when I am. 😠 I’m a little bit on edge because my blood sugar has been all over the place lately, and I have to head in for my next chemo cycle this coming Monday... hopefully things settle down by Friday... just stay strong and hang in there with me like you always do.
Best, Grace Fowler

I just wanted to add that I used to be terrified of dying—like, genuinely paralyzed by it. But this? This totally flipped my perspective on death...

Death is just part of the natural cycle, you just gotta accept it. Honestly, I think it’s way worse when someone doesn't actually live their life while they're here...

A person isn't just some physical body. We're made of a body, spirit, and soul...
When someone passes, we say goodbye to their physical shell, but who says we can't think about them a hundred times a day? Give them a mental hug, talk to them... the physical stuff isn't the point...

I won't be able to help anyone if I'm feeling like crap, and I'll only end up hurting myself. So, I've decided to choose happiness. To be proud and happy!

Hang in there, everyone. Just keep being a Fighter until the very end!!!

Drew Price73 said:...the body isn't the core essence...

That’s just how it is. 🙂

Angela Wright said:Just take it easy and keep pushing forward by keeping those positive thoughts front and center in your mind.🙂

Thanks for that. 🙂

My head feels completely blank right now, which might just be my version of normal, though I have to admit there are moments when even I find the emptiness a little unsettling.

Melissa Kim45 said:Thanks. 🙂

Right now, my head is just a complete void. Maybe that’s actually the norm. Sometimes, honestly, I even scare myself.

I get those moments too—where both my head and my heart feel totally hollow. Every single time it happens, I end up spiraling because I start thinking I’ve become this empty shell of a person, devoid of any actual thoughts or feelings. There are times when I feel absolutely nothing, even toward my boyfriend, who is literally my entire world. I’m convinced it’s just a defense mechanism; we basically go into autopilot and switch our emotions to standby mode just to get through the day. It’s probably just a necessary part of surviving this trauma.

I’m feeling just a little bit livid because...

So, my sister who lives over in the USA went ahead and put together this sweet little care package for my mom, who’s currently battling breast cancer. She picked out all these thoughtful things—hats, a wig, some linen shirts so Mom can stay cool in the sun, a special toothpaste for mouth sores, some pretty pictures, scarves, a specialized bra, and even some educational brochures about cancer—just to cheer her up and feel close to us since she can't be here by our side in America.
She sent everything via FedEx on Monday, and we were all expecting it to arrive today, you know? But instead, US Customs decided to hold the whole thing hostage because the value apparently exceeds the $800 limit allowed per person! Now, they’re saying they have to open everything up, inventory every single item, and demand receipts for every little thing???? Honestly, my sister clearly listed everything inside the package, noted that she’s covering all the costs, paid for everything upfront, and explicitly marked it as a gift to help someone fighting breast cancer, but it really feels like the government thinks they need to turn a profit off people who are already suffering... I am just so incredibly angry and heartbroken, and Mom is so upset too because she can't get her hands on these simple little things that would have brightened her day just a tiny bit. I know there are much bigger problems in the world and maybe this seems trivial to some of you, but really, shouldn't we show a little compassion instead of being so rigid over stuff like this?😠

Carol Sanchez2 said:I’m honestly just livid because...

My sister over in the States pulled together a care package for my mom, who’s fighting breast cancer. She bought little things to cheer her up—hats, a wig, linen shirts for when she needs to be out in the sun, special toothpaste for mouth sores, some photos, scarves, a specialized bra, and even some educational brochures. Since she can't be here with us in America, this was her way of being there for her.
She sent everything via FedEx on Monday, and we were expecting it to arrive today. Instead, US Customs decided to hold the whole thing hostage because the value exceeds the $800 limit allowed per person. Now, they’re going to rip the package open, inventory every single item, and demand receipts for everything? My sister clearly listed every item inside, stated she was covering all costs, paid everything upfront, and specifically marked it as a gift for someone battling breast cancer. But apparently, our government needs to squeeze every cent out of people who are already suffering. I’m beyond angry and heartbroken; my mom is so upset because she can't get her hands on these simple comforts that would actually make her feel better. I know there are bigger problems in the world and this might seem trivial to some, but should we really be this rigid over something like this?😠

Unfortunately, bureaucracy and the law don't care about feelings; they apply the same way to everyone. If she had thought to send it through a humanitarian organization, an American expat group, or even a church charity, it might have gone smoother. Those groups always have people traveling back and forth who could easily pick it up and hand-deliver it. They have their own channels, and usually, humanitarian aid doesn't get hit with these kinds of customs fees, provided it's registered correctly. Next time you need to send something, it’s definitely best to go through one of those routes.

I’ve been wondering—if you get those tumor markers tested right after surgery and the numbers come back significantly lower, does that actually mean the tumor is gone and the threat is over? Or... is there still a chance it's lurking somewhere in the body? Basically, which diagnosis is the most precise way to know for sure whether it's out of the system or not?

Be a Fighter for your life!

Melissa Kim45 said:Yeah, Dr. Hammer. There’s actually been some discussion about him over on the Spirituality boards.

There's some info on here too.

Plus...

If you search online, you'll find a ton of resources on this in English.

You can find more details about New Medicine right here. The site is still under construction, but it should be fully up and running soon.
www.nova-medicina.net

Scott Kelly3 said:I'm wondering if, following tumor surgery, markers taken afterward showing significantly lower values means the tumor has retreated and the threat is gone... or if there's still a chance it remains. What diagnosis is the most precise way to know if it's still present in the body?

Be a Fighter for life!

Look, removing the tumor should theoretically drop the amount of cancer cells circulating in the blood, but I have no clue to what extent that happens or how much time it takes for the blood to be completely "cleared." That’s essentially why doctors push for chemotherapy or radiation after surgical procedures where the tumor was only partially or fully removed—those methods are designed to wipe out any lingering cells left behind, hopefully preventing a recurrence or metastasis. After the surgery, they run those marker tests to get a baseline right before starting formal oncology treatment so they can compare it to future results.
In my opinion, CT scans and MRIs are the most reliable diagnostic tools, though even they aren't perfect since cancer can still exist at a cellular level and develop over time (which is why they rely on markers, even if those markers aren't 100% foolproof). Usually, doctors use a combination of several different diagnostic methods to ensure they can reach the most accurate diagnosis possible.

Angela Wright said:I have those moments where my head and heart just feel completely void. I end up spiraling because I start thinking I’ve become this hollow shell without any real emotions or thoughts left... sometimes I feel totally numb even toward my boyfriend, who means everything to me. I suspect it's a defense mechanism—we just go through the motions mechanically, switching our emotions to standby mode. I suppose it's just part of the survival process after dealing with this trauma.

Hi everyone,

I’ve been lurking here for a while, reading without finding the words to contribute... but after reading Angela Wright's post, I felt compelled to speak up. I'm feeling the exact same way, and honestly, I thought I was losing my mind. My father passed away, and while I know it isn't easy, there are these sudden moments where I feel absolutely nothing at all. It makes me wonder if something is fundamentally wrong with me. I want to be able to cry out all the pain from this loss, but I just can't. Perhaps it really is a defense mechanism—or maybe it's the strength God gives us to be a Fighter.

Carol Sanchez2 said:I'm honestly pretty pissed off right now because...

My sister living over in the States put together this care package for my mom, who’s currently fighting breast cancer. She picked out a bunch of little things to brighten her day—hats, a wig, some linen shirts for when she needs to be out in the sun, even that special toothpaste for mouth sores. She also grabbed some photos, scarves, a mastectomy bra, and some info booklets on cancer. It’s her way of being there for us since she can't be here in person.
She sent it via FedEx on Monday, so we were expecting it to arrive today. But nope—US Customs decided to hold the whole thing because the value is over the $50 limit allowed per person. Now they’re going to tear everything open, inventory every single item, and demand receipts for every little thing? Seriously?? My sister went through all the trouble of listing every item on the package, clearly stating she was covering all costs, paying all the fees, and even marking it as a donation package for breast cancer patients. But apparently, our government thinks there's money to be made off of people fighting cancer. I am beyond livid, and honestly just heartbroken. My mom is so upset because she can't get her hands on these simple things that would have actually cheered her up. I know there are much bigger problems in the world and this might seem trivial to some of you, but should we really be this rigid over something like this?😠

I had a similar experience when I was working with my livestock.
My sister sends me stuff from the UK all the time and I never get anything. Just once, she actually included an invoice with the package, and they hit me with customs duties immediately—it ended up being like 30% of the total value. Total rip-off.
Give it another shot without running the numbers or looking at the values first. Might just work.
Those people are absolute animals. She literally said it was for a kid fighting cancer, but they couldn't care less. No heart at all.
I’m usually a pretty chill person, but man, dealing with all this government bureaucracy is driving me absolutely insane—unless you count the rare exceptions.

Hey everyone,
Been scrolling through your posts all day—really hoping someone can point me in the right direction here.
My mom is fighting breast cancer and just finished her first round of chemo... but she’s digging her heels in about doing more. Whether she realizes it or not, she's resisting. A few days before her second scheduled session, she had some nasty stomach pain, and things started looking a bit grim. We waited for that second round, but after sitting at the clinic for five hours, she got hit with such bad nausea they actually sent her home to "recover."
Before this, she had some issues with her white blood cell count and ended up stuck in the hospital for ten days...
Her reasoning? She says the treatment is killing her, she can't handle swallowing any more pills, and it's absolutely wrecking her stomach.
I've tried talking sense into her, but I'm hitting a brick wall...
Anyone have any advice on how to handle this?
I heard there's a counselor over at the Mayo Clinic who helps with this stuff, but they're only in on Wednesdays, and I really need help ASAP...

dustysurfer10 said:Hey everyone,
I've been scrolling through your posts all day hoping someone might have some insight here.
My mom is battling breast cancer and just finished her first round of chemo...but whether she realizes it or not, she’s digging her heels in against doing more. Right before her second scheduled treatment, she had some stomach pain a few days prior... things calmed down for a bit... we waited for that second round, but by the time we actually got to the front of the line after five hours in the waiting room, she was hit with such intense nausea that they sent her home to 'recover.'
Before that, she had some issues with her white blood cell counts and ended up spending ten days at the hospital...
Her reasoning is basically that the treatment is killing her, that she can't handle swallowing this many pills anymore, and that they're tearing up her stomach...
I've tried explaining the necessity of it, but I'm hitting a brick wall...
Does anyone have any advice on how to move forward?
I heard there are specialists over at the Mayo Clinic... but they only see patients on Wednesdays, and I'm in a real time crunch here...

I went through the exact same thing with my mother, though in her case, it was glioblastoma where the survival odds are pretty much zero regardless of whether you do chemo or not. She didn't want to spend what little time she had left suffering, so she opted for alternative treatments instead. (Mind you, once a recurrence showed up, she did decide to go back to chemo and radiation.) As much as it crushed me to watch her make that call, I had to force myself to respect it. It's her life, and she was making an informed decision while she still had her wits about her.

If I can offer one piece of advice: if your mom is still lucid and the prognosis isn't hopeless—meaning there's actually a shot at recovery—try talking to her again. But don't go in hot. Don't get angry or pushy. Just lay out the cold, hard facts and ask questions like, "Do you think it might be smarter to try this..." or "What are your thoughts on..." That way, you aren't steamrolling her; you're leaving her enough breathing room to feel like she's still the one in the driver's seat.

Whatever she decides, you're going to have to accept it. There's no other way. It's a fundamental human right to make decisions for oneself—honestly, if we were in her shoes, we'd probably be making the exact same choices.

At the time, I selfishly viewed my mom's decision as a lack of courage because she always had a sensitive, fearful nature. Looking back now, I realize how much strength it actually took to make a choice like that. I was the selfish one; I felt this desperate need to "save" her simply because I needed her there for ME—to help me through MY crises, to meet MY kids, to be present for MY husband, to stay in MY life. She knew all of that, and frankly, my desperation only made it harder for her to decide. My mom loves me endlessly, and I'm sure yours feels the same about you.

Respect her choice. I know it's incredibly painful, but I truly believe that's what defines us. It's what makes us mature compared to people who never have to face the gut-wrenching weight of watching a loved one choose their own path. It was the hardest, most important lesson my mother ever taught me.

I'm sending you all the strength in the world to handle whatever happens next.😳

p.s. If she does end up going back to chemo, check out the forums here. We've talked quite a bit about supplements that help manage the side effects. When my mom started her rounds again, she knocked back some Native propolis and Monk extract without any trouble at all. That might give you some leverage! Let her read some of the testimonials from people in the same boat over at www.hedera.hr

Angela Wright said:I went through the exact same thing with my mom—but in our case, it was a glioblastoma where the survival odds were basically zero whether she did chemo or not. She just didn't want to spend whatever time she had left suffering, so she opted for alternative treatments instead. (Though, once the cancer came back, she did decide to go with chemo and radiation.) As much as it killed me to accept her choice, I had to force myself to respect it. It’s her life, period. She was completely lucid when she made that call.

My advice? If your mom is still sharp as a tack and the prognosis isn't totally hopeless—meaning there actually *is* a chance at recovery—try talking to her again. But listen—do it constructively. No bitterness, no pushing. Just lay out the facts and ask things like, "Do you think it might be smarter to..." or "What are your thoughts on..." That way, you're giving her the space to make her own calls.

Whatever she decides, you’ve gotta roll with it. There's no other way. It's a basic human right to choose for yourself—honestly, if we were in her shoes, most of us would probably make the exact same choice.

Back then, I actually thought my mom was being a coward because she always had a bit of a sensitive, fearful streak. But looking back now? Man, I see how much strength it took to make that decision. I was the selfish one—I felt this desperate need to "save" her just so SHE could be there for ME during my own crises, to meet MY kids, to see MY husband, to stay in MY life. She knew all that, and honestly, that's why I made it even harder for her to decide. My mom loves me endlessly, and I bet yours feels the same about you.

Respect her choice! I know it's incredibly brutal, but I think that's what defines us. It's what makes us mature compared to people who never have to deal with the sheer weight and bitterness of watching someone they love make a life-altering call. It was the biggest, toughest lesson my mom ever taught me about life.

Sending you all the strength in the world to handle whatever path she chooses.😳

p.s. If she does end up going back to chemo, check out the forums—we've talked a ton about supplements that help cut down the side effects. When my mom started chemo, she powered through it using Native propolis and Monk fruit. That might give you some solid leverage! Let her read some testimonials from people in the same boat over at www.healthline.com.

Thanks, Ivancic.
I'll try that (for the millionth time)... I'll also try to talk her into going to the Mayo Clinic for a consultation, if I can convince her... Does anyone know if it's hard to get an appointment there? We're in a bit of a rush since it's already been over 30 days since her first round of chemo.
I think the max break is usually 6 weeks.
We tried the Monk fruit stuff; she didn't really have nausea until she got close to the next round of chemo. The Native propolis spiked her blood pressure too much, though, and since she has heart issues, we're staying away from that.
Is there anything else to replace Reglan? She says it slows her digestion way too much, and Zofran just shuts everything down...
Does anyone know of any other clinics? Everything I find online only takes appointments for a few hours a week, and between cooking, cleaning, work, and hospital runs, I need something more flexible.

dustysurfer10 said:Thanks, Ivancic.
I’m going to try this—for the hundredth time, probably... I’ll also try to get her over to the Mayo Clinic for a consultation if I can actually convince her... Does anyone know if getting there is a hassle? We’re in a bit of a rush since it's already been over 30 days since her first chemo session.
I assume the maximum gap allowed is six weeks.
I tried using some Monk remedies, but honestly, she didn't even have much nausea until we got closer to the second round of chemo. That Native propolis sent her blood pressure through the roof, and since she has a heart condition, we can't touch that again.
Is there anything else that works like Reglan? He says it slows her digestion down way too much, and Zofran just makes her completely constipated.
Does anyone know of any other clinics? Everything I find online only operates for a few hours a week, and between the cooking, cleaning, work, and hospital trips, I need something with more flexible hours.

I find it hard to believe her blood pressure spiked from propolis; most sources claim it actually helps normalize blood flow and heart function.
The Mayo Clinic has a center specifically for psychological support for breast cancer patients. It might be worth reaching out to them.

Angela Wright said:I feel like you really need to lower the count of tumor cells circulating in the blood by physically removing the mass—but honestly, how much does that actually help, and how long does it take for the blood to be completely "cleared"? Who knows. That’s probably why they push chemotherapy or radiation after surgery when a tumor is partially or fully removed; those methods are meant to kill off any lingering cells left behind in the body to prevent a relapse or metastasis. After an operation, doctors run marker tests just to get a baseline right before oncology treatment kicks in, so they have something to compare against once everything is done.
In my view, CT scans and MRIs are the most precise diagnostic tools we have—even if they don't catch everything. Cancer can still exist at a cellular level and develop over time (which is where markers come in, though let's face it, they aren't 100% foolproof). I think the goal in diagnosis is to layer different methods together to ensure the diagnosis is as accurate as possible.

Thanks for the response—after reading that, my confidence in your expertise (based on your experience) is definitely stronger. You help so many people, and I'm sure you can feel that coming back to you... keep it up. How is your mom doing? Your fight for her really touched me. You've become someone special.
I found out today that my cancer (testicular cancer) has metastasized to the lymph nodes in my abdomen—tomorrow I find out what stage we're dealing with, depending on how thick those nodes are. What I'm struggling with is which type of therapy is actually better. Some people say to avoid radiation because of the risk of complications from damaging healthy tissue. But then again, you hear that radiation is the most effective option specifically for testicular cancer. Can you recommend an oncologist for my specific case—someone you know is actually good? I've had some pretty bad experiences with doctors in the past, so finding a decent one is my top priority right now. I've already decided I'm going to seek second and third opinions once I have all my results in hand. Thanks in advance, and sorry if I sound a bit jittery while typing this...