Support for families dealing with cancer and other serious illnesses (Part II)

This thread has honestly been such a lifeline for me. For the past month, I’ve felt pretty isolated since I had to stay home to watch the kids—they're still so little—while my husband was at the hospital every single day with his family. Even though he kept me updated on everything, I found so much useful advice and genuine support right here.

We didn't lose hope until the very last second; we kept praying for some kind of miracle. It's incredibly hard on them because they feel like there was nothing more they could do, but thankfully, the doctor explained things clearly. Now I can finally see that there truly wasn't anything else that could have been done. If there's one thing I've learned, it's that we really need to encourage our fathers-in-law and older relatives to actually show up for those annual physicals once they hit 50. If anyone reading this is procrastinating on their own checkups or neglecting a loved one's health, please, take this as your sign to act before it's too late. Asking "what if" after the fact just doesn't help anyone now.

I am so incredibly sorry for your loss.
Sometimes preventive screenings can change the course of things, and sometimes they just don't.
In my own experience, they found metastases alongside another cancer, and the whole thing unfolded in a whirlwind of about six weeks. It was just one test after another, with bad news piling on top of more bad news. Before that started, I had been doing checkups every three months and was still on hormone therapy because of my initial breast cancer diagnosis.
I’m not going to sit here and claim that preventive screenings are useless—of course everyone should stay on top of them.

It’s been an entire year since I last saw my dad alive. It’s honestly terrifying how fast the time has slipped by. And yet, at the same time, it feels like it all happened just yesterday...
Not a single day goes by where he isn't on my mind. In a way, I still find myself acting as if he’s still out there somewhere, he just hasn't made his way back home yet...

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First off, I want to send my deepest condolences to everyone here who has lost someone dear. I’ve been away from this forum for a year and a half, and unfortunately, we lost two battles in such a short window back then. As things stand now, we're back in the fight again. Does anyone here have experience dealing with bladder cancer? My dad is in the hospital right now; they suspect that's what it is. I have two main questions while I try to wrap my head around everything. He’s having surgery today—they told us it’s through the urethra (sorry, I can't recall the technical term)—and said they are removing the tumor. If they are just removing the tumor, does that mean the cancer hasn't spread? When they did his chest X-ray, they mentioned shadows and metastases, but wouldn't they run more tests if they actually suspected metastasis? Also, if there is a suspicion that it has spread, do they go ahead and remove the bladder and everything necessary during this specific surgery?

neoncyclist792 said:Does anyone have experience dealing with bladder cancer? My dad is in the hospital right now, and they suspect it might be that.

I don't have any firsthand experience with bladder cancer, as my own diagnosis was breast cancer, so please take my advice and comments as purely general observations.

neoncyclist792 said:If they are only removing the tumor, does that mean the disease hasn't spread? Because when they did his chest X-ray, they mentioned shadows and metastases, but wouldn't they run more tests if they actually suspected metastasis?

From what I gathered during my own journey, doctors generally won't touch the primary tumor with surgery if they strongly suspect it's already metastasized. That said, I actually went through surgery despite having metastases myself, so it seems like every case is a bit of a toss-up—it really depends on the specific nature of the illness and how the medical team evaluates it individually. Based on what you've shared, it sounds like the surgery is being done primarily to confirm the bladder cancer diagnosis once and for all.
It strikes me as a little odd that they haven't ordered a CT or a PET scan for your father yet, since those are pretty much standard procedure whenever there's even a hint of metastasis.

It’s the third morning without my mom by my side.
I’m currently under anesthesia, just waiting for the pain to hit me. I can feel it coming...

I’ve always known health is the most important thing in the world, but yesterday hit me harder than anything else. To everyone out there who has lost loved ones fighting these battles, I am sending you my deepest condolences.

My dad (64) just got his diagnosis yesterday: gallbladder cancer. He went in for laparoscopic surgery to deal with gallstones, but they had to do an open surgery because they saw the tumor. They ended up removing his gallbladder and part of his liver that was affected. The biopsy results show Stage II. He’s seeing an oncologist this Tuesday, but I already showed the results to our local oncologist here. Honestly, the prognosis for this specific type of cancer isn't great. It’s one of the rarest kinds and it’s super invasive. I'm struggling because we have zero experience with this. It only hits about 5 out of every 100,000 people. My local oncologist hasn't actually dealt with this specific tumor in practice yet. I haven't read every single post on here, but does anyone have any experience with this?

Can someone who actually knows what they're looking at decode this report for me?

Newly developed pathological FDG metabolism in the newly enlarged nodes within the mediastinum, para-aortic, left hilar, and interlobar regions suggests active malignant disease and secondary effects.
Left parietal arachnoid cyst, showing no changes compared to the last check-up.
Sporadic diverticulosis in the sigmoid colon.
An old, stable compressive fracture of the T5 vertebral body, mostly due to osteoporosis.

Oh, I forgot to mention—my tumor markers have also doubled.

Thanks

Well, that doesn't sound particularly good. What we're looking at is an "accumulation" within the nodes where nothing was present before, which suggests that the tumor has likely spread—meaning we're dealing with metastasis, or secondary growths.

Raymond Smith53 said:Yeah, that doesn't sound great at all. It means there's some "buildup" in nodes where nothing was there before, which basically means the tumor probably spread—you know, metastasis.

I see that, but where exactly did it spread to? Like, is it the Lung?

Maria Gray45 said:I see that, but where exactly did it metastasize? Was it the lungs?

The lungs, yes.

Maria Gray45 said:I can see that, but where exactly did it metastasize? Was it the lungs?

Well, it spread to the lymph nodes surrounding the lungs, and we're likely looking at lung cancer—specifically a "regional" spread of that malignancy. If I had to guess, given the involvement in the mediastinum, we're talking Stage 3.

Maria Gray45 said:Can someone who actually knows what they're looking at help me read this report?
Newly developed pathological FDG metabolism in newly enlarged lymph nodes within the mediastinum, para-aortic, left hilar, and interlobar areas suggests active malignant disease and secondary effects.
Left parietal arachnoid cyst, unchanged during the follow-up period.
Sporadic diverticulosis of the sigmoid colon.
Old, stable compressive fracture of the T5 vertebral body, primarily due to osteoporosis.

I should also mention that my tumor markers have more than doubled.

Thanks,

Right in that first sentence, it mentions "newly developed pathological metabolism," which essentially means you already had a diagnosis in place and were comparing this new PET scan against an older one to track changes. You also mentioned tumor markers down below—since there’s a massive variety of those out there, it would be really helpful if you could specify which exact markers were tested. Even so, the fact that you're monitoring specific markers for certain types of cancer pretty much confirms you've been dealing with a diagnosis for a while now.
Based on what you've shared here, the report indicates metastasis in the lymph nodes of the mediastinum. To put it simply, the mediastinum is the space in your chest located between your lungs, your breastbone, and your spine. From what I can gather here, it looks like the lungs themselves haven't been directly affected yet.

If anyone here has dealt with mesothelioma, could you please reach out? I'd really appreciate it... thanks.

That’s not my own report (Thank God), but basically, the pelvic area and the area around the lungs are hit.
The diagnosis has been on the table for a while now—uterine cancer was officially diagnosed four and a half years ago. She had surgery, then about two years later in 2016, it spread to part of the lung. Things stayed relatively stable after that, but everything took a turn for the worse a few days ago, and the PET CT scan confirmed it.
The oncologist said the only option left is chemo toward the end of June.
What can anyone actually expect from all this? Is the end near?

Kimberly Taylor92 said:If anyone has experience dealing with mesothelioma, could you please reach out? Thanks!

My mom went through this herself. Shoot me a PM if you want to talk privately about what's on your mind!

Maria Gray45 said:This isn't my specific report (thank God), but it looks like both the spine and the area around the lungs are affected.
The diagnosis has actually been on the table for quite a while now. Uterine cancer was officially diagnosed four and a half years ago, she had surgery, and then about two years later in 2016, it spread to part of the lung. Things have been relatively stable since then, but over the last few weeks, the condition has taken a turn for the worse, which is what the PET scan revealed.
The Oncologist mentioned that the only option left is chemotherapy toward the end of the sixth month.
Given everything we're looking at here, what should we realistically expect? Is the end near?

Look, I’m no doctor. Questions like that are best handled by the oncologist actually managing the case.
That said, it's usually worth giving treatment a shot if there's an option on the table.

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Michelle Perez40 said:Look, I’m no doctor. You really need to be asking an Oncologist who’s actually running the show here.
But honestly? It’s always worth giving the treatment another shot.

She went to see the Oncologist, but it wasn't even her regular one—just some random doc who didn't say anything useful at all. Basically just said things have gotten worse, which she can clearly see for herself, and mentioned she ended up in the ER one day, so maybe try chemo again.
Is any of this even worth the struggle? Does it make sense?
We've been dealing with this whole mess for four and a half years now.

Well, you can always seek out a second opinion if you're feeling unsure, but when it comes to whether chemotherapy actually makes sense... honestly, that depends on an incredible number of variables. You have to look at the patient's overall physical condition, their age, how much fight they still have left in them, and, of course, the specific type and stage of the tumor itself.
Since oncologists are privy to all those clinical details, they only suggest chemotherapy when they believe there's a legitimate reason to do so—though, let’s be real, it isn't always offered, mostly because it's far from being some cheap, easy fix like an Andol tablet. They generally proceed under the assumption that the treatment will actually serve a purpose, whether that means extending life expectancy or simply making the time someone has left a bit more bearable and higher in quality.

Raymond Smith53 said:Look, you can always go out and grab a second opinion. As for whether chemo actually makes sense... man, that depends on a million things. Your overall health, how old you are, if you even have the will to fight, the specific type of tumor... it's complicated.
Since oncologists already have all those details in front of them when they suggest chemo—and let's be real, they don't just offer it to everyone because it's definitely not some cheap magic pill like an Andol—they're probably assuming it'll actually do something. Either extend life or at least make what's left of it suck a little less.

When she got diagnosed back in December 2013, she had the gynecological surgery right away. They told her if she could just hang in there for two years without being totally miserable from nausea, she'd be okay. Well, here we are five years later and she's still kicking. After the surgery, she did radiation and one round of chemo, but then she bailed on the rest because the pain was so insane she thought she was gonna die. Now that they've offered her chemo again, they told her they'd give her meds for the pain and emphasized that she absolutely has to chug massive amounts of water. Apparently, that's huge.
What else is a big deal when it comes to chemo?