Support resources for families dealing with cancer and other serious illnesses

Drew Thompson5 said:When it comes to actually talking to her doctors, it feels like an impossible mission; the surgeon basically gave my husband and father-in-law a two-sentence "explanation" after the surgery regarding her condition, and I have to say, he didn't offer much hope at all, plus the oncologist seems to be out of the office more often than not, so they end up being handed off to two different doctors during just two separate appointments.

I know this feeling all too well, 😢
we had three follow-ups with my mother's primary doctor, and in those three instances, she was dealing with three entirely different physicians. 😢

She goes to Mayo Clinic for her treatments, where, thank goodness, they take a much more serious approach to monitoring a patient's progress, which really makes you feel like you're in safer hands.

I don't know, if things are truly this disorganized and if it’s within your means, perhaps it might be worth seeking a second opinion at a different hospital... I'm just thinking out loud here.

Hey Ko-ka,

It's been a while since we talked! How did everything go at the Mayo Clinic for your mom’s checkup, her PET scan, and all that?
I'm really crossing my fingers that everything is still looking good...👍
Let me know!

Angela Wright said:I missed the part where he hasn't started chemo yet. Usually, if you run a high fever while on treatment, you have to head straight to the ER to get stabilized... infections can be lethal at that stage.

Then again, sometimes they don't make it. That’s how my old man went out. He caught some virus while undergoing chemo for Non-Hodgkin's, even though his oncologist at Mayo Clinic gave him a great prognosis. He wouldn't just stay home and rest; he kept wandering around. Lost 45 pounds in a single week because of that virus and just... stopped.

Almost ten years since that happened (according to the calendar—in my head, it feels like yesterday).

crimsongull20 said:There’s also the possibility that things just don't go according to plan. That's how my old man went out. He picked up some nasty virus while he was undergoing chemo for Non-Hodgkin's lymphoma, and his oncologist at Mayo Clinic had given him an incredible outlook for recovery. But he wouldn't stay put or take it easy; he kept pushing himself, wandering around like everything was fine. He dropped twenty pounds in a single week because of that virus and just... flickered out.

It’s almost been ten years since that happened—at least according to the calendar, though in my head, it feels like it was just yesterday.

Our little girl went out the exact same way. She ran a fever for a good week and refused to go to the hospital. By the time she finally took a turn for the worse and they rushed her in, her hemoglobin levels were practically non-existent... and then she was gone.😢

Angela Wright said:Our daughter went through the same thing. She had a fever for a solid week and refused to go to the ER. Eventually, she took a turn for the worse and they rushed her in, but by then her hemoglobin levels were practically non-existent... and she was gone...😢

My old man was hospitalized too, but they couldn't do anything for him.
It seems like my family is just cursed to deal with medical malpractice. I really hope I'm the last one in my lineage to face this, and that other families have better luck with their doctors.

Honestly, the only thing I fear more than cancer is the doctor who’s supposed to be treating it.

Angela Wright said:Our daughter went through the exact same thing. She had a decent temperature for about a week and just refused to go to the hospital—stubbornness runs in the family, I guess! Finally, she just took a turn for the worse and they had to rush her in. Her hemoglobin levels were practically non-existent... and then she was gone.😢

It's me again—honestly, I’m at my wit's end and don't know what we should do. My mother-in-law mentioned she almost collapsed at church today—and just to be clear, the church is massive, so I really don't think it was a lack of oxygen or anything like that. She also said she ate quite a bit, and she doesn't even have a fever right now... so, what's the move here? I'm thinking maybe she needs an IV with some vitamins just to perk her up a little? She spent the entire last week struggling with intense pain—plus, she's got those medicated patches on—so I'm wondering if she might just be dehydrated? She's always been terrible about drinking enough water... please, any advice helps!!!

Drew Thompson5 said:It’s me again, and I’m honestly at a loss here. My mother-in-law claims she almost collapsed at church today. Just to be clear, the cathedral is massive, so I highly doubt she ran out of oxygen or felt suffocated in there. She also mentioned having plenty to eat, and it wasn't even warm in there... so what am I supposed to do now? Personally, I think she needs some kind of IV drip with vitamins to perk her up, especially since she spent the entire last week suffering through intense pain and wearing that medical patch. Maybe she's just dehydrated; she’s always been terrible about drinking enough water... please help!!!

I remember when my own mother passed out in church once during communion. My immediate reaction was pure fury toward the priest and the deacon who suggested we just let her lie on the floor because she was "resting in the Holy Spirit" or some nonsense like that—as if you shouldn't touch someone in distress. I practically screamed at them: "Excuse me, people, she has a brain tumor!"
...anyway, they eventually brought her a glass of water, she came to, and she just went home like nothing happened.
The church is huge too—like a massive St. Patrick's Cathedral type of space.

Look, people who are that sick are much more sensitive than the rest of us. That constant cycle of standing up, sitting down, then standing back up will wear anyone out. Her blood sugar could be crashing, or her blood pressure could be swinging wildly, and suddenly you've got a fainting spell.
Let her rest today and stop pushing her. Just whip up some hearty soup and call it a day.

Angela Wright said:I remember when my mom collapsed once at church during a service. I totally lost it on the priest and the deacons—they were actually suggesting we just let her lie there on the floor because she was "resting in the Holy Spirit" or some nonsense like that! I was practically screaming at them, like, "Excuse me, people, she has a brain tumor!"
...anyway, they eventually brought her a glass of water, she came to, and just headed home like everything was normal.
The church itself is massive too—kind of like those big cathedrals you see in Chicago.

Listen, people who are dealing with illness are way more sensitive than the rest of us—between all that standing up and sitting down, it just wears you out. Her blood sugar drops, her blood pressure goes haywire, and boom—you've got a fainting spell.
Let her just rest today and take it easy. Make her some hearty chicken soup and call it a day.

Yeah, this one is also a big old cathedral, similar to the ones downtown in DC... Thanks. Honestly, we're all just exhausted. She’s starting chemo soon, so I guess these kinds of episodes might happen more often. We're so used to her being this powerhouse—never sick, never complaining, always able to handle anything—so seeing her like this is just really tough on us. I can't even begin to imagine what she's going through; it has to be a million times harder for her than it is for us.

World Cancer Day, February 4th — Where do we actually stand?

article published: 02.03.2010.

Every February 4th, the world marks World Cancer Day. Today, members of the "United Against Cancer" coalition of oncology advocacy groups are calling out federal health authorities. They are reminding Washington about the standing Resolution on malignant tumors and hammering home a vital point: patient advocacy groups must be given a seat at the table when drafting and implementing the National Cancer Control Program. Without a comprehensive National Plan—one that actually defines specific targets and strategic goals—it’s impossible to pull off effective prevention or provide systemic care for those already battling the disease.

Global experts are sounding the alarm, predicting that cancer deaths will hit 11 million people by 2030. Most of these fatalities will occur in developing nations that lack the infrastructure to handle the crisis. America shouldn't be complacent; we have our own massive hurdles to clear.

The federal government hasn't ignored the issue entirely; they've made some strides by launching early detection programs for breast and colorectal cancers, along with HPV vaccination drives to prevent cervical cancer. But let’s be honest: right now, these initiatives feel like sporadic, localized efforts rather than a cohesive national strategy. Because turnout for certain screenings remains low, we need much tighter cooperation between the Department of Health and Human Services and civil society organizations. The reality is grim: cancer mortality rates are still climbing. According to recent data, we are still struggling with high death rates compared to other developed nations.

We need to stop dragging our feet. We have to accelerate existing early detection programs and force a better partnership between the government and the advocacy groups that carry one of the heaviest burdens in this fight: shifting the public perception so that a cancer diagnosis isn't viewed as an automatic death sentence.

While it's a relief that effective screening exists for three major types of cancer, we can't ignore the dark side of the coin. Some cancers simply aren't preventable, they're detected too late, or there are damn few therapeutic options available. For rare cancers, life-saving drugs are often unavailable within our borders. We need more funding—not just for research, but to pour resources into primary and secondary prevention, cutting-edge diagnostics, treatment, rehab, and palliative care through the establishment of dedicated hospice facilities. Furthermore, we must urgently address the blatant violations of patient rights and the discrimination faced by both patients and their family caregivers.

The only way to wage a real war against cancer is to unify every sector of society under one banner. To that end, oncology groups formed the "United Against Cancer" coalition. Their goal is simple but massive: to amplify the voices of all patients—regardless of whether they face common or rare malignancies, or what age they are—and to present a single, unified front when dealing with medical professionals and federal institutions.

The Oncology Advocacy Coalition "United Against Cancer!"

Members of the "United Against Cancer!" coalition:
"A New Day," "Steady Sails," "All for Her!", "EuroColon," "The Spark," "Europa Donna," "The American Laryngectomy Association," "The Leukemia & Lymphoma Society," "The American Hospice Friends Association"

Reading these posts gives me chills. It always ends in tears for me, especially when it involves a young person or a child. Thankfully, no one in my family has ever faced a malignant illness, but seeing what people endure is devastating. I am currently dealing with an ongoing issue regarding my sister. This struggle has lasted for several years now. It is heavy. I try not to dwell on the worst-case scenarios, but the fear and anxiety are always lurking in the back of my mind. Constant worry is exhausting. I joined this forum recently to find some relief, but reading about these tragic fates leaves me feeling both lighter and deeply saddened.
I am asking anyone who has dealt with a similar situation to please share your experience:
My sister is an identical twin, and when she was about four years old, doctors suspected lymphoma. They performed a biopsy on her only enlarged lymph node at the time, but the results were inconclusive. She was told she just needed follow-up checks every three months. She has never been particularly disciplined about her health, so those check-ups eventually dwindled down to just once a year. Now, new nodes have grown on the right side of her neck, varying in size. Her doctor is demanding another biopsy because, based on his experience, he is certain it is some form of lymphoma. This exact uncertainty happened just a year ago, and again, the analysis yielded nothing. New nodes continue to appear, including one in her right breast. We sought a second opinion from a different specialist—I don't have the name or the specific files, but we traveled to a major medical center in Chicago for the consultation. He suspected it might be a benign tumor of the lymph nodes that could transition into something malignant. He suggested surgical removal and preventative radiation. However, everything hinges on a pathological analysis to confirm if it is indeed Castleman disease, as he called it. Between work, kids, and daily responsibilities, my sister tends to brush it off. But the nodes are there, visible to the naked eye. We recently arranged for a PET scan at a facility in Chicago. My husband and I insisted on taking her there. The nodes in her neck showed up clearly on the scan. I posted about this previously, and the feedback suggested a malignant etiology, recommending another pathology report. What do we do now? She seems dismissive because doctors keep giving conflicting opinions. Some suggest removing the entire cluster, which sounds incredibly invasive, while others suggest removing just one. Has anyone lived through something like this? Does anyone have recommendations for where to send samples for testing? Anything would help...😕🤷
Thank you.

John Cox8 said:Honestly, reading these posts just gives me chills—I always end up tearing up, especially when it involves someone young or a child. Thankfully, we’ve never had a cancer diagnosis in my family, but man, it is heartbreaking to see what people have to endure. I’m actually dealing with a situation involving my sister right now—it’s been weighing on us for a few years—and it’s just hard. I try not to think the worst, but those fears and anxieties are always lurking in the back of my mind. It’s heavy. So, I come to this forum (I’m pretty new here!) to find some relief, though I usually end up feeling a bit saddened by everyone’s tough journeys too.
I was wondering if anyone who has dealt with something similar could share anything:
When my sister was about four years old, her identical twin started showing signs of potential lymphoma. They did a biopsy on a lymph node—which was the only one at the time—but the results were totally inconclusive. They told her she just needed check-ups every three months. Now, she’s never been the most disciplined person when it comes to health stuff, so those "every three months" visits turned into once a year. In the meantime, new nodes started growing on the right side of her neck, all different sizes. Once again, the doctor is demanding another biopsy because, based on his experience, he’s certain it’s some kind of lymphoma. But just like last year, the analysis didn't give us a clear answer. Then more nodes popped up—some in her right breast, too. She saw a different specialist—I don't have the name or the records, they were seen in a clinic in Chicago, though we're originally from out of state—and he thought it might be a benign tumor that could turn malignant. He suggested removing everything as a preventative measure, but everything hinges on a pathology report to confirm it—he even called it "Castelman disease." Between work, kids, and life, my sister just brushes it off... but the nodes are there, and you can literally see them with the naked eye. We finally heard about getting a PET scan done at a facility in Chicago, and since I insisted, my husband and I drove her there to get it done. Those nodes in her neck showed up clearly on the scan. I wrote about it before, and they said it could be malignant and recommended another pathology test. What do we do now? She acts like it’s no big deal because one doctor says this and another says that. Some suggest removing the whole cluster, which sounds incredibly intense, while others say just take one. Has anyone gone through anything like this? Any suggestions on where to send samples for analysis? Honestly, anything would help...😕🤷
thanks

Most of the time, we don't even have time for ourselves... my father-in-law has nodes on his neck and salivary glands; they're benign, but they need to be removed. Just stay persistent—make sure she keeps seeing the doctor.

My mother-in-law has already cruised through her first two rounds—now she’s got about a three-week break before the next one. During that first session, she was feeling pretty nauseous, so they switched up her anti-nausea meds right away—which was a lifesaver because after that, she didn't have any pain or sickness at all! The second one was just yesterday, and while she’s feeling a little wiped out today, she's doing alright overall.

Drew Thompson5 said:My mother-in-law finished her first two sessions, and now she’s in a bit of a lull, maybe three weeks or so. During that first one, she was feeling pretty nauseous, so they swapped out her anti-nausea meds right away, which helped because once that was settled, she wasn't in any pain and the sickness subsided. The second session was just yesterday; she seems a little wiped out, but otherwise, she's doing okay.

That actually sounds fairly manageable to me. I wonder how many rounds of therapy she'll have to go through in total?

I can't help but worry about how my own mom is going to handle this whole treatment process.
She's already having such a rough time recovering from the surgery itself, so I find myself wondering how much more she can take once the chemo and radiation start kicking in...

Drew Thompson5 said:We rarely make time for ourselves. My father-in-law has some swollen lymph nodes in his neck. They're benign, but they need to be removed. Be persistent. Make sure she sees a doctor.

In her case, it really is the lymph nodes. She’s going in for a biopsy this Monday. We aren't sure yet if they'll just take one or try to clear them all out. Then comes the lab work. We're also considering sending a sample off to a specialist for further testing. I'm staying hopeful that everything turns out fine.
Thanks for the response. I wish your father-in-law and everyone else here a very speedy recovery.

Today marks another day in the ongoing fight against cancer...

To anyone currently navigating the complexities of various illnesses or just trying to make sense of our healthcare system, I truly hope you find the strength to push through and manage to keep your sanity intact while doing so.😁
Wishing everyone nothing but good health and wellness.🙂

Kimberly Wright said:Today is a day to fight against cancer..

To everyone out there battling various illnesses—and let's be honest, fighting our healthcare system too—I wish you strength in your fight and hope you can keep your sanity intact! 😁
Wishing you all nothing but health. 🙂

I was honestly terrified about how everything would go—how she’d handle it all. Recovering from surgery was such a brutal process; she barely ate and the pain was just constant... and man, that morphine patch? That nearly killed me just watching her deal with it! But she’s clearly a fighter—she has so much willpower. Even though she kept insisting she wouldn't touch chemo or radiation and would only do the surgery, she ended up starting the chemo anyway, and from what I can see, she's doing really well. I actually need to correct myself—I mentioned earlier that her next round was in three weeks, but it’s actually in two weeks, provided those blood levels (if I remember correctly) look good. I really hope your mom handles the treatments just as well. You never truly know how much of a warrior you are until you're thrown into the deep end—and since my mom rejected everything at first, I think she's definitely fighting. I finally witnessed that famous stubbornness of hers!!! It used to drive me crazy, but now? I could kiss her for it.

Drew Thompson5 said:I was also incredibly terrified about how everything would play out—how she’d handle it all. The recovery from surgery was brutal; she could barely eat and the pain was just relentless... honestly, those morphine patches were a lifesaver, though I didn't realize how much they'd help at first. But clearly, she’s fighting. She has this will, even though she kept insisting she wouldn't touch chemo or radiation, wanting nothing but the surgery and then being done with it. Yet, here she is, starting the chemo, and from what I can see, she’s doing remarkably well. I actually need to correct myself; I mentioned earlier she was going back in three weeks, but it looks like it'll be two weeks if her blood counts (if I recall correctly) stay where they need to be. I really hope your mom handles her treatments just as well. You never truly know how much of a fighter you are until life forces your hand, and seeing as my mom rejected everything at first, I think she really is fighting after all. I finally witnessed that famous stubbornness of hers! It used to drive me crazy, but now? I’d kiss her for it.

My mom has reacted to all of this in ways I never could have anticipated.
She’s always been such a vibrant, social, and selfless person—someone who genuinely loves being around people and stays positive through thick and thin.
This illness has worn her down physically, but I get the sense it’s taking a toll on her spirit too.😢
It feels like she’s become selfish, which is so unlike her. Sometimes, she reminds me of a child trying to manipulate their parents.
I suppose it's just fear, isn't it?

Right at the start, I was talking to a friend whose mother passed away from cancer, and not long after, her mother-in-law—who she was incredibly close to—passed away as well.
She told me she was far too soft with her mother, catering to her every whim. With her mother-in-law, however, she was much firmer, almost driven by a sort of stubborn defiance. She thinks she should have treated her mother the same way.🤷

To be honest, my mom put on a few scenes that made me feel like I was losing my mind. Eventually, we had a very blunt, very direct conversation, and things improved significantly after that. I’ve noticed that the moment I soften up even a little, everything just falls apart again.😁

I’m trying to find this balance—trying to nudge her to take some responsibility for herself again, while still letting her handle certain small tasks around the house, just so she can feel that she’s still needed, that she’s still "essential."

Kimberly Wright said:My mom reacted to everything totally differently than I expected.
She’s usually such a vibrant, social, and selfless person—just loves being around people! Always the optimist.
This illness has worn her down physically, but honestly, it feels like it’s hitting her spiritually too 😢
I feel like she’s become selfish, which is just so unlike her. Sometimes she reminds me of a kid trying to manipulate their parents.
I guess it’s just pure fear.

Right at the start, I was talking to a friend who went through this—her mom got sick with cancer and passed away, and then a while later, the exact same thing happened with her mother-in-law, whom she was incredibly close to.
She told me she was way too soft with her mom—basically catered to her every whim. But with her mother-in-law? She was much sharper, and I think that stubbornness just stuck with her. She says she probably should have handled her mom that same way 🤷

As for my mom—she put me through enough scenes that I seriously thought I was going to lose my mind! Eventually, we had a really blunt, honest talk, and things actually improved quite a bit after that. I noticed that the second I let my guard down, everything just goes completely sideways 😁

I’m trying to nudge her toward taking some responsibility for herself again, but I also try to give her little chores around the house—just to give her that feeling that someone still needs her and that she’s still "essential."

You know her better than anyone, and mine just won't budge. If I try to push too hard, she shuts me out instantly—though, after a little while, she’ll end up asking for something I mentioned earlier. Dealing with a serious illness naturally brings up the whole question of mortality, and that’s tough for anyone. Just take it slow with suggestions. At the end of the day, she’s the one facing this—she’s confused, she’s hurting, and she’s scared. I’m pretty sure she’ll hit that phase of positive defiance, just like my Sveki, where she starts fighting back against the disease. Once that happens, you won't feel like you're fighting against her anymore.

Hey everyone🙂

I have two questions here, and I’m hoping someone might actually have some answers for me🙂

1. My mom is 62, and back in December, she underwent surgery for ductal breast cancer—a mastectomy and reconstruction. Out of 18 lymph nodes removed, one was positive, and they also had to clear out a benign tumor from her other breast. The medical board suggested the most aggressive chemotherapy followed by hormone therapy since the cancer is hormone-positive. However, two oncologists—not part of that specific board—told us that such intense chemo would be way too much for her. She’s already dealt with a stroke, has 65% blockage in her carotid arteries, and suffers from angina pectoris, so they recommended sticking strictly to hormone therapy. So, I wanted to ask if anyone here knows what the actual odds are of the cancer returning if she only does hormone therapy... One of those doctors suggested she get checked every six months for the other breast, her liver, and her bones, though her surgeon argued that bone scans aren't necessary because this type rarely spreads there, and he agreed that chemo might do more harm than good—he even mentioned it could actually kill her. Nobody wants to give a definitive prognosis, obviously, but maybe someone here has an idea, even just a rough one...

2. While she was in the hospital, I started feeling pain in my left breast, specifically on the outer side, happening several times throughout the day. I panicked. I tried to tough it out for a few days, but eventually, my boyfriend convinced me to check, and I didn't feel anything unusual. The pain went away for about ten days, but then a week ago, it came back—same spot, same frequency. On top of that, for the last few days, my left armpit has been hurting too; sometimes it happens out of nowhere, and sometimes when I lift something heavy, though once it hurt so bad it even hit my jaw. Honestly, I'm just a coward and I can't bring myself to feel my left breast again... I'm terrified after everything my mom has gone through... I'm 22, and I really need to know if there's a chance all of this is just psychosomatic, and if there's any possibility that this isn't cancer and is caused by something else?😢 I can't sleep at night, partly because of Mom, partly because of me, and partly because of everything else going on... I honestly don't know how I'd handle it if I had cancer too; it feels surreal how everything is hitting at once, and I am desperately hoping I'm wrong...

Hi everyone. I've been sitting here all evening reading through your posts and just trying to soak it all in.
Basically, my mother has breast cancer—stage 2—and she’s heading in for surgery soon.
I wanted to reach out and ask for some opinions or advice, but
to be honest, I think I lost track of half the details because I'm still in such a state of shock.
She had her blood work done today for the markers, so now we're just waiting on those results.