Support resources for families dealing with cancer and other serious illnesses

Please let me know if there’s any information on this forum that could help. I’m looking for a patient advocacy group or a support association in the US where my mom might find some psychological help—ideally through talking to someone who actually beat this kind of nasty disease. She had surgery for breast cancer 22 years ago and everything was fine until last year. During a routine checkup, her CA marker—I think it was 15-3—came back elevated. Her oncologist suspects a recurrence, and since then, she’s been stuck in a loop of endless tests and appointments. It feels like she’s at a clinic every single week. That marker value has jumped to 53 now. On top of everything, she had a PET/CT at Medicol, and the results were catastrophic. There's pathological glucose uptake in the lymph nodes and the thyroid, a thickened stomach wall, and a whole list of other issues. The conclusion was clear: the findings point to an active malignant process. My mom has completely fallen apart mentally. She cries constantly. Even without a formal diagnosis yet, she’s already sorting out her paperwork for the apartment, the car, life insurance—everything—as if she’s going to die tomorrow. My dad doesn't know how to handle it; he keeps leaving the house just so he doesn't have to look at her. I live on the other side of the city, working and raising a small child, so I can't be there with her nearly as much as I'd like.
Thanks in advance, and sorry for the long post.

I feel like I’ve ended up on probably the heaviest, most difficult thread on this entire forum... so, let me start from the beginning. My mom had surgery just over a month ago, right after New Year's. She was dealing with this intense pain in her lower abdomen, so we rushed her to the ER, and they admitted her immediately because they couldn't pin down what was happening—they initially thought it might be appendicitis or something similar. Once the surgery was done, we got the real news: it was colon cancer. They managed to remove the tumor, but it looks like it has spread to the lymph nodes near the bowel. The frustrating part is that she was doing so well right after the operation; she could eat normally and felt relatively okay. But over the last week, I don't know what happened, she's just become incredibly weak. She can barely eat anything without feeling nauseous or throwing up, and we've already had to make two trips to the emergency room this past week alone. Each time, they just tell us it's "nervous stomach" caused by stress. According to their CT scan, they claim nothing has spread enough to cause this level of pain, so they just gave her some Xanax, something for the pain, and Controloc for her stomach. What I really want to ask is, for those of you who have been through this, will this depression and total loss of strength get worse once chemotherapy starts? And how does she handle being around other people going through the exact same thing? I honestly feel lost on how to help her... she’s only 47, and she's completely lost her will to live; every day she finds it harder and harder to even get out of bed, let alone eat. We’re heading to the imaging center for a PET/CT this Monday, and it looks like chemo should begin in about ten days or so.

Sorry for such a long post, but I just can't find a way to make this any shorter...

I also wanted to ask if anyone here has been through this—you know, being sick and actually coming out the other side. I’m feeling completely stuck because I don't know whether to push her to eat, force her to get out of bed, or just keep fighting with her about everything. Every single mealtime turns into this thirty-minute marathon of drama and constant bickering between us, only for her to end up barely eating two bites. It feels like a losing battle. On one hand, I can't just let her sit there on an empty stomach taking Xanax and pain meds, and I certainly can't just let her surrender to that damn bed, because if she does, it feels like she’s giving up on life entirely. But at the same time, I have no clue how to help her see that she can actually pull through this. If anyone has experience working with a psychologist or someone who provided real, tangible help during a time like this... please, I'd love to hear your thoughts. Thanks in advance. 🙂

Jessica Long44 said:And one more thing—if anyone here has been through this and come out the other side, please help. I don't know if I should force her to eat, force her out of bed, or just keep fighting with her about everything. Every single mealtime turns into a thirty-minute drama session—just constant bickering back and forth—only for her to end up eating two measly bites. I can't just let her take pain meds or Xanax on an empty stomach, and I can't just let her surrender to that damn bed because then it feels like it's all over. But at the same time, I have no idea how to make her realize she can actually survive this... If anyone has experience with a psychologist or someone who actually made a difference, please let me know. Thanks in advance. 🙂

Reach out to Dr. Braš at Rebro. She’s a psycho-oncologist.
You cannot force your mother into anything! It is absolutely vital that you stop feeding into those depressive thoughts yourself. This isn't exactly a "happy" topic for anyone dropping by, but it’s definitely not the worst one out there. Cancer isn't some monster under the bed; it's a reality that happens. People have built this terrifying image of cancer as some kind of Babaroza that kills everyone it touches. That is simply not true, and it doesn't have to be.
You need to sit down with her and have an honest, objective conversation. She is where she is; she can't just step out of her own skin, but she can fight, and she will fight. It isn't just about the medication; it's about the mindset—refusing to let the disease dictate how she lives her life. She is the boss of her own existence, and she needs to be the one in control of this illness. She needs to live day by day, dealing with things as they come. That goes for you and everyone else, too. Don't let her illness become your personal crisis. She is the one going through this; you are just being affected by it indirectly. You need to be her support system and her logistics coordinator, but every decision remains hers. And truth be told, those decisions won't always align with what you want. Explain your perspective to her, let her chew on it, but you cannot coerce her into doing something she refuses to do. You’re going to have to learn to accept that and offer support whenever and however you can.
She needs to seek help. She is a grown, mature adult who has to take responsibility, even in situations like this. It all boils down to one thing: her choices.
Besides Dr. Braš, the Krijesnica association also provides psychological support. www.krijesnica.hr
There is one common thread among everyone who has successfully fought their way through cancer: they all had a positive environment, family support, and an unshakable will to live!
Hang in there.

Hey everyone,

Does anyone here have experience dealing with a diagnosis of peritoneal mesothelioma?
I’m really hoping to connect with someone so I can share what I’ve been going through and maybe get some insight on what the next steps look like...
🙂
Thanks so much in advance.

Jessica Long44 said:I’m so sorry to be starting this on what feels like one of the heaviest threads on this whole forum... so, here goes. My mom had surgery just over a month ago, right after New Year's. She was having this intense pain in her lower abdomen, so we rushed her to the ER, and they ended up admitting her immediately because they weren't quite sure what was going on—they actually thought it might be appendicitis or something similar. After the surgery, we found out it was colon cancer. They managed to remove the tumor, but it looks like it spread a bit to the lymph nodes around the area. The thing is, she was doing so well right after the procedure! She could eat, she felt okay... but then, I don't know what happened, this past week has been brutal. She can barely keep anything down, everything nauseates her, and she keeps throwing up. We've already had to go back to the emergency room twice in just the last seven days. This time, they just told us it was stomach nerves due to stress. According to their CT scan, nothing has spread enough to cause that level of pain, so they gave her some Xanax, something for the pain, and Controloc for her stomach. What I really need to ask is, for anyone who has been through this: will this depression and total helplessness happen once chemo starts? And how is it being when she's around other people going through the exact same thing? I feel so lost on how to help her... she's only 47, but she's lost all desire to live, and every day she finds it harder and harder just to get out of bed, let alone eat. We're heading to the PET/CT at Medicol this Monday, and it looks like chemo should start in about ten days.

Sorry for the long post, I just couldn't find a way to make it any shorter...

I feel like I can answer some of these questions. I'm 38, and I went through a very difficult surgery about a year ago. The symptoms were almost identical—the behavior, the refusal to eat... everyone was incredibly understanding. Don't force it. I actually ended up hospitalized two more times after my surgery; I couldn't eat, I couldn't sleep, nothing. Eventually, they started reading to me, and we began talking about things we'd never discussed before, just little bits at a time. It just takes love and patience... it's a long road, but it's worth it. I'm here now, I'm doing well, and my girls and my family are doing great too. Just stay brave, everything will turn out alright...

🙂 thanks so much, ladies.

Hey everyone!
Quick question—my mother-in-law is heading in for a PET scan today for breast cancer. I was reading online that people might still be radioactive for a few hours afterward, so you aren't supposed to be too close to kids or pregnant women.
My husband is the one driving her home after the appointment, and now I'm totally freaking out thinking he'll pick up some radiation and bring it home to me and our two little ones.
Has anyone dealt with this before? Should I keep my husband away from the kids today? I'm honestly lost...

just a panicked, worried mama

granitepilot48 said:Hey everyone!
I have a question. My mother-in-law is going for a PET/CT today for breast cancer, and I was reading online that after the scan, the person actually emits radiation for a few hours, making it unsafe to be near kids or pregnant women.
My husband is driving her home after the appointment, and now I'm spiraling, worrying that he’ll pick up some radiation and bring it back to me and our two little ones.
Has anyone dealt with this before? Please let me know if it's safe to let my husband be close to the kids today...

just a panicked and scared mom

That sounds like total nonsense you picked up from some pseudoscience or New Age website. Honestly, if that were true, the technicians working the PET/CT machines would have accidentally wiped out their entire families within their first year on the job.
There is absolutely nothing to worry about; everything is fine.

Angela Wright said:That’s just nonsense you probably picked up from some esotericism websites. Seriously, if that were true, the techs running the PET scans would have "taken out" their entire families within their first year on the job.
No need to worry, everything is fine.

--------------

So what's the best way to prep? I actually read about it on the Medicol website under the PET scan section.
I don't buy into any of that woo-woo stuff—that's the last thing I'd ever go looking for!
Thanks a bunch, feeling a little more chill now.

granitepilot48 said:--------------

I checked the Medicol website to see what they recommend regarding the best way to prep for a PET/CT scan.
Look, I don't have time for esotericism or pseudoscience; that’s the last thing I’d ever waste my energy reading!
Thanks a lot, I'm feeling a little more composed now.

I have to be honest, this is the first I've heard of anything like this, especially since it mentions Medicol. You should probably just call them directly and demand an explanation.

Unfortunately, my mom couldn't make it to her MRI today, and honestly, there's very little hope she'll be able to go at all. She spent all of yesterday dealing with constant nausea and intense lower abdominal pain. By the afternoon, she started vomiting blood😢, so we rushed her to the ER and she was admitted. She went into surgery early this morning: her abdominal cavity was full of tumors, and they had to perform a bowel resection. She’s in the ICU now—she's awake and fully conscious. The doctors told her it was just ruptured ulcers, but we know the real truth.
They aren't exactly optimistic about her recovery from the surgery, though a tiny sliver of hope remains.
😢😢
I don't know... I'm bracing for the worst.

I feel like I might be a little late to this conversation... but when my mom went in for her PET scan, they told her the same thing. They said she shouldn't be hanging out too close to kids or pregnant women because she’ll be emitting radiation for about six hours afterward. That being said, it’s the machine doing the radiating, right? It isn't like the person herself becomes radioactive and starts spreading it to everyone else like some kind of contagion...

granitepilot48 said:Hi everyone!
I have a question—my mother-in-law is heading in for a PET scan today (for breast cancer), and I was reading online that after the scan is finished, the patient actually emits radiation for a few hours? Is it true that they shouldn't be near children or pregnant women?

I know this is coming a bit late, but just some info for anyone wondering in the future...

A few hours following a PET scan, there is still some radionuclide present in the patient's system—so yes, they do technically emit radiation. Now, these doses are incredibly small, but as a standard precaution, it isn't recommended to be in close contact with pregnant women or young children immediately after.

There is no such thing as "transferring" the radiation via a third party; in other words, if someone does come into contact with a patient who has received a radionuclide (again, keeping in mind those doses are minimal!), that contact person doesn't start radiating themselves. In this specific scenario, a husband can absolutely hug his kids without any issues.

Once 24 hours have passed since the radionuclide application, there are absolutely no restrictions left at all.

granitepilot48 said:--------------

What’s the best approach? I actually found that information myself on the Medicol website—under their section regarding PET/CT scans and how to prepare for the procedure.
I don't believe in esotericism—that’s the very last thing I’d ever bother reading.
Thank you so much—I'm feeling a little more at peace now.

What you read on the Medicol website isn't nonsense—not by a long shot. These instructions need to be followed. Strict adherence is required. It’s not a coincidence—as wanderingcobra76 explained in such thorough detail earlier.

By the way, if you ever find yourself feeling uncertain about radiation used for diagnostic or therapeutic purposes—it really is best to consult the official websites of the International Atomic Energy Agency.

Dear Rebecca,

About eighteen months ago, my mother was diagnosed with colon cancer, and her abdominal cavity was apparently riddled with what they officially termed "inflammatory processes"... After that, she went through three different types of chemo that didn't do a thing, and by then, the metastases had already spread to other organs, resulting in two large tumors—one in her abdomen and one at the colon exit. During that whole ordeal, she underwent four surgeries and ended up with a colostomy bag. She hasn't been able to get out of bed for several months now, and this past week, she’s stopped eating entirely; we’re just giving her water via syringe because she can't even manage a straw anymore. Last week, she started vomiting this greenish-brown fluid, and there's constant dark bloody discharge from the colon... As for the pain, I don't even know how to bring it up, it's just too hard to describe despite all the medication: Durogesic (she's on 250 now), Voltaren, Ketonal, Sevredol, Ibuprofen...

Robert Grant84 said:Dear Rebecca,

About a year and a half ago, my mom was diagnosed with colon cancer. They officially called it "inflammatory processes" filling her abdominal cavity. Since then, she’s gone through three different types of chemo that didn't do a thing—metastases spread to other organs, and two large tumors grew (one in the abdomen and one at the colon exit). During that time, she also underwent four surgeries and had to get a colostomy bag. For several months now, she hasn't been able to get out of bed, and this past week, she stopped eating entirely. We're giving her water via syringe because she can't even manage a straw anymore. Last week, she started vomiting a greenish-brown fluid, and there’s dark blood leaking from the colon constantly. As for the pain—I can't even begin to describe it, regardless of the meds: Durogesic (now up to 250), Voltaren, Ketonal, Sevredol, Ibuprofen.

Honestly, I am so sorry about your mother.🙂 We haven't reached a phase this difficult yet. To be blunt, I’m not even sure if it’s a good idea—or if I even want it—for Mom to recover from this surgery, given everything else. I know how grim this sounds and looks, but she has brain metastases that might have been removable via Gamma Knife. Recovering from this surgery will take forever, if it even happens, and by then, those brain metastases will almost certainly have grown significantly. She also has them in her lungs and adrenal glands. I just don't know...😢😢

Regarding the PET/CT, that info was right there in the patient instructions provided on-site. I know people going in for thyroid scans using radioactive iodine get the exact same set of directions. Personally, I trust what's written in those official patient guides, and besides, it’s clearly stated. Let's be real—the amount of radiation involved in a PET/CT scan, specifically the radioactive tracer the patient receives, is massive. It's enough to make you wonder... one of the actual risks of this procedure is that the intense radiation could potentially trigger secondary issues, like cancer. It's rare, sure, but it does happen.

My mom finally finished a brutal, year-and-a-half-long fight yesterday...