Support resources for families dealing with cancer and other serious illnesses

Sarah Johnson11 said:It’s me again. I think you might have already known this, but I have a question for you—and anyone else here who has dealt with this specific type of carcinoma.
She was discharged from the hospital today, so I can type out the diagnosis directly from her discharge papers.

PHD - Cystadenocarcinoma papillary serous ovary 1.dex.
Thromboembolism
Duodenal bulb ulceration - no further bleeding.

Did your mother have this exact type of carcinoma, or does anyone else here? From what I understand, it’s ovarian papillary carcinoma.
As of now, the abdomen and its organs look okay—no metastases found there.
However, the lung scan shows a lymph node and a shadow that suggests the possibility of metastasis.
She’s been sent home for a brief recovery period, after which she’ll see an oncologist to determine her chemotherapy regimen.

Her general condition is quite poor; she barely communicates, eats very little, and just wants solitude and peace, which we are respecting.
I can't really look after her right now because, unfortunately, I am also struggling with some very grim test results and my own health issues. I’ve been battling chronic lymphocytic leukemia for years now, and these past few days, I feel like I’m back at square one. But I know I’ll pull through; I’m mentally resilient, and more importantly, I’m driven by a deep sense of optimism. She, on the other hand... I don't think it's the right time to say anything to her regarding the prognosis; she doesn't want to discuss it, so we’re stepping back.🤷 Perhaps eventually, she will be ready to accept it herself.
I worry about her constantly. It breaks my heart, and it’s incredibly difficult to watch when I wish I could just give her a shred of my own energy and will to live. If I could, I’d be much happier. I am right there beside her, but I feel powerless. I’m present, but most of the heavy lifting is being done by others; I’m essentially just a support system and an observer at this point. I don't know how to talk to her or what to say to spark even a tiny desire to engage, because I believe it’s easier when all the sadness and pain are allowed to surface through tears—at least, that's my theory, though I could be wrong.
Thank you for the support and the advice.

The diagnosis wasn't identical. I don't remember the exact specifics (I'll check the files when I get home from work, I still have them saved), but I know it was ovarian adenocarcinoma with abdominal metastases, Stage IIIc. From what I can tell, your mother-in-law is actually in an earlier stage since there aren't any metastases in the abdomen.
I am so sorry that you are fighting this awful disease as well.
Try to find ways to give your mother-in-law some motivation to keep fighting. Mention her son; if you have children or grandchildren, tell her how much you all love her and need her in your lives. You could also share stories of people who fight cancer and win (like our friend Kimberly Wright on the forum, who fought ovarian cancer for 13 years).
It’s completely normal for her to be terrified. When my mother was first diagnosed, she kept crying that she’d never see the ocean again, so I told her to stop talking nonsense and that we’d go together next year—and we did. She has to go through this phase of confrontation before she can snap out of it. I don't know what her usual temperament is, but I believe everyone has an innate will to live. In this moment, I think you should encourage her to stay close to the family rather than isolating herself; isolation only leads to darker thoughts.
I thought it would be the same for my mother, since my father passed away less than a year before her diagnosis, and I feared she would just give up and follow him. But she didn't let go; she wouldn't leave me alone.
I suggest you join the American Cancer Society forums.http://forum.cancer.org/index.php. They have carcinomas categorized by type, and the site offers a wealth of advice from users. We also have access to oncologists there who are always willing to help.

Sarah Johnson11🙂

I honestly think you really ought to sit down and talk with your mom—like, a lot of deep, meaningful conversations. I know from my own experience that when I'm left alone with my thoughts, the pessimism and those heavy moods start creeping in, especially when I get stuck in these non-constructive mental loops.

Before her surgery, when they let her come home for the weekend, she was just completely despondent. She was totally convinced that everything was over and that she basically had to say goodbye to life itself.🙄
So, there I was, just talking and talking to her all through that weekend, and yet... nothing seemed to work.
But then, out of nowhere, this one conversation—something that felt entirely trivial to me—somehow lifted her spirits and gave her a little nudge.🙂

After the surgery, she told me that our little chat had cheered her up so much that she actually went into the procedure with a genuine will to recover and heal.

And I'm telling you, I remember what we were talking about, and even now, that specific conversation doesn't seem particularly significant to me. But to her? It meant everything.🙂

Hey there,

I’m dealing with a situation pretty similar to what Nina mentioned.
My mom had surgery for breast cancer about five months ago, and she’s been going through chemo.
Well, last week she ran a fever, so they had to admit her to the hospital.
Since we live nearly 249 miles miles away from her, it’s tough for me to swing by every single day after work.
On the phone, she keeps insisting everything is totally fine and that she'll be discharged in just a couple of days. Once I talk things over with my father, we'll see how it really looks—honestly, I think she's just trying to keep from worrying me too much.
Mentally, though, she’s really struggling. When she was doing chemo, she stayed busy working Monday through Wednesday, headed to treatment on Thursday, and then rested until Monday. Now that she isn't occupied with work, all these dark thoughts are starting to creep in. Today, she told me her doctor wants her to undergo thirteen more rounds of chemo over the next year, and she’s flat-out refusing. She says she can't handle it anymore and would rather just live another few years and call it a day. The hardest part is that she isn't even old—she's only 55.
Does anyone have any advice?

How can I help her stay positive and stop being so pessimistic?

Does early tumor detection rely heavily on a complete blood count? I mean, if those results come back looking perfectly normal, does that effectively rule out malignant diseases?

Melissa Moore39 said:Does a complete blood count matter for early cancer detection? I mean, if the results come back normal, does that rule out malignancy?

It matters, sure, but it’s far from a silver bullet. Think of it this way: with leukemia or lymphoma, a CBC will almost certainly flag that something is broken. But with other types of tumors, you could have a perfectly "normal" blood count and still be facing a serious issue.
Doctors also use blood tests to check for specific markers or antigens—essentially looking for certain proteins produced by cancer cells. By tracking the concentration of these markers, they can monitor how the disease progresses or how well treatment is working. Just don't take those markers as gospel; they aren't 100% reliable and should always be interpreted with a healthy dose of caution.

Hey everyone,
I’ve finally decided to stop lurking and actually post something here. I've been through the ringer with breast cancer surgery, survived chemo, and now I'm currently in the middle of radiation treatments.
Life is short, so we really have to make an effort to enjoy every single day, don't we? 🙂 Best of luck to all of you out there—stay strong.

Join the movement Together Against Cancer and chip in to help us fund an Endoscopic Ultrasound, a vital tool for catching lung cancer spread early.

I’ve got some extra Ensure in various flavors—about two packs (roughly 50 servings total)—up for grabs if anyone needs them.

Shoot me an email at lawrence.adams5@gmail.com

Someone close to me is having frequent episodes that look a bit like epilepsy. She’s in her early twenties and dealing with some heavy family issues. I’ve been reading online about how certain neuropsychological disorders can surface after intense stress like that. During these episodes, she stays fully conscious but just loses control over her body—her tongue muscles tense up, sometimes an arm, and her eyes roll back. She knows something is wrong, but she's refusing to see a doctor. I guess I'm wondering how to help her or who the right person to contact would be.

If anyone out there is looking after a terminal patient struggling with cachexia, extreme weakness, or depression... please, just reach out via PM

Rachel Bailey86 said:Someone close to me is having frequent seizures that look a lot like epilepsy. She’s in her early twenties and dealing with some heavy family issues. I’ve been reading up online, and apparently, certain neurological disorders can trigger after intense periods of stress. During these episodes, she stays fully conscious but loses all control over her body. Her tongue muscles tense up, sometimes her arm, and her eyes roll back. She knows something is wrong, but she’s refusing to see a doctor. How can I help her, and who should we turn to?

Get her to a primary care physician immediately so they can issue a referral to a neurologist.
Whatever the underlying cause is, these outbursts are dangerous—they could be fatal if she doesn't take action right now.
A seizure might be epileptic, but it could also be the result of a brain tumor. There is an entire spectrum of neurological conditions that present themselves this way.
Try explaining to her that if this is indeed epilepsy, every single seizure leaves behind lasting damage to the brain.

Hi everyone! I’m brand new to this group, and honestly, Hat 8 really encouraged me to come over here and join the conversation.

So, here’s our story—about three months ago, my husband was diagnosed with a super rare type of cancer called Pseudomyxoma Peritonei, which basically means a tumor originating from the appendix that affects the abdominal cavity. It all started with these random, nagging stomach pains way back in May, but you know how it goes, right? We just brushed it off, thinking maybe we ate something weird or it was just some minor indigestion or whatever. But after two months of dealing with it, I finally got fed up and booked him a private ultrasound over at Quest Diagnostics in Seattle. And that's when everything changed. They found a massive amount of mucus buildup inside his abdomen. From there, it was a whirlwind of endless tests until they finally hit us with the diagnosis. It turns out the tumor grew on his appendix, ruptured, and leaked all that mucus everywhere. The doctors in Seattle performed a laparoscopic surgery to remove the appendix and that whole mess, then sent him straight to Chicago to go to the General Hospital for the actual cleaning process. They told us the procedure was routine enough, but that the specialists in Chicago just had much better equipment for this specific thing. Well, once we actually arrived at the General Hospital, we were absolutely blindsided. The tumor turned out to be malignant, and the surgery ended up lasting a grueling 12.5 hours—he had the operation on November 3rd, where they had to remove his gallbladder, spleen, peritoneum, and parts of both his small and large intestines. We were all just completely devastated. Obviously, he had it the worst, but I couldn't stop myself from breaking down in tears constantly. I knew I had to stay strong for him, but oh man, it was so incredibly hard. My mind was just racing with all these terrifying "what if" thoughts, though somehow we managed to push through them. The hardest part of all was seeing that look of pure sadness in his eyes while he was playing with our baby. He's doing a bit better now, and we've managed to learn a little more about this disease, which has helped settle our nerves just a tiny bit.

I've been reading through various stories here, but I was wondering, does anyone else have any firsthand experience dealing with this specific type of tumor?

I could really use some advice here.
Does anyone know where I can get a CT scan done quickly without breaking the bank?
The folks over at General Hospital told me their machine is out of order, and even if it were working, there’s no way I could get an appointment fast enough.
If I tried going through a major hospital system like Mayo Clinic, I’d probably be waiting at least a month, and I just don't have that kind of time on my hands.
I reached out to Quest Diagnostics, which seems to be my only real lead right now, but the total for the CT scan plus the contrast dye is coming out to $483
The thing is, this scan absolutely has to happen by next Thursday at the latest.

What should my next move be?

Kimberly Wright said:I need help!
Where can I get a CT scan done quickly and affordably?
The staff at General Hospital told me their machine is broken, so I can't get seen urgently.
If I went through the VA, I'd be waiting at least a month—I don't have that kind of time.
I called Quest Diagnostics. That seems to be my only shot right now, but a CT scan with contrast is going to cost $483
We have to get this CT finished by next Thursday at the latest.

What should I do?

Quest Diagnostics, there's no other way.😢

Angela Wright said:Medicol, there really isn't any 😢

Yeah.
I actually reached out to a few other clinics to see what the deal was, but they all told me they'd already hit their quota through Medicare. It seems like the pricing is pretty much the same everywhere you look, regardless of where you go.

I can't help but feel a certain amount of sympathy for people who find themselves unable to access decent healthcare just because of something as arbitrary as how much money they have in the bank.

Kimberly Wright said:I really need some help here!
Where can I get a CT scan done quickly and without breaking the bank?
The people at General Hospital told me their machine is out of order—plus, the wait times are just way too long right now.
If I went through a major hospital like Mayo Clinic, I’d be waiting at least a month—and I just don't have that kind of time...
I called Quest Diagnostics. That seems to be my only lead so far, but the whole thing—the CT plus the contrast dye—is going to cost $483
We absolutely have to get this scan done by next Thursday at the latest.

What should I do?

Have you tried calling Nemetov?
My mom actually went there earlier this spring using her Medicare because the scanner at the University Research Center was broken...
I saw you mentioned calling other clinics, so I wasn't sure if you'd checked them out yet...

Maria Fox said:did you try calling Nemetov?
my mom actually had her tests done there through Medicare earlier this spring since the machine over at the Institute was out of order.
I see you mentioned calling other clinics, so I wasn't sure if you'd reached out to them yet either...

nobody ever picked up at Nemetov, and then things just got hectic again, so I haven't bothered calling them back.
never mind. I'll probably just get the same old response I got from everyone else: they've already hit their quota for referrals, or perhaps I can snag an appointment sometime next year.

tomorrow I'm going to go ahead and book something at one of the private clinics. there really isn't much of a choice left.
I read somewhere that some people were trying to get reimbursed by insurance...
if anyone happens to know anything about how that works, please let me know. I really need to watch every cent because this therapy is going to be a long haul, and who knows how many other random expenses are going to crop up along the way?

Kimberly Wright said:I really need some help here!
Does anyone know where I can get a CT scan done quickly without breaking the bank?
The folks at General Hospital told me their machine is out of order, and even if it wasn't, I wouldn't be able to get an appointment nearly fast enough.
If I tried going to Rib, I'd be looking at waiting at least a month—and I just don't have that kind of time on my hands.
I gave Quest Diagnostics a call, and they seem to be my only real lead right now, but a CT scan plus the contrast dye is going to run me $483
We absolutely have to get this CT finished by next Thursday at the latest.

What am I supposed to do?

Have you thought about calling Boise? My mom actually had to get an MRI not too long ago, and while the waitlist in Seattle was like two months long, she managed to get seen in Boise within the very same week! And the best part was she used her insurance for everything. I'm not totally sure if they have a CT scanner available there, but hey, what's the harm in giving them a ring just to ask?

Kimberly Wright said:I read somewhere that some people have asked for reimbursement from insurance...
if anyone knows anything about how that works, please let me know. I need to watch every cent—this therapy is going to take a while and who knows what other expenses are coming down the line

Go down to Medicare and ask for the "insured person's claim for cost reimbursement" form. Just check the box under item number one for unjustified medical service charges...
Basically, just state that the medical facility wouldn't allow an urgent exam that was absolutely necessary due to certain reasons. Attach your medical records (photocopies) along with a specialist's recommendation or proof why the urgent visit was needed. Hand everything in to Medicare and you should get your money back within two months. If they give you any nonsense, make sure to appeal it.

Our hospital refused to send us for a routine (MRI) scan after a tumor re-operation, and that’s how we got our money back.

lonedriver123 said:Just head down to Medicare and ask for the "insured person's request for reimbursement of costs" form, then check the box under item number one regarding unjustified medical service charges...
Basically, you just explain that the medical facility wouldn't allow the urgent exam that was absolutely necessary due to certain circumstances! Attach some brief medical documentation (a photocopy will do) along with a specialist's recommendation or the specific reason why the emergency visit was required. Leave everything with Medicare, and within two months, they should have the money back to you. If they give you any kind of nonsense response, make sure you file an appeal.

Our hospital refused to authorize a routine (MRI) scan after a tumor re-operation, and that's how we managed to get our money back.

thanks for the reply 🙂
I guess I'll give that a shot