Support resources for families dealing with cancer and other serious illnesses

Andrew Newman2 said:Hi everyone,

Most of you are just so kind and optimistic.
Real fighters—honestly, until three months ago, I couldn't have even imagined the kind of battle you have to wage against these diseases.

Three full months ago, my dad was diagnosed with malignant melanoma, nodular type,
Clark V, Breslow 4.
Right out of the gate, we were warned about how aggressive and unpredictable this tumor could be.
After a sentinel biopsy showed metastases in one axillary lymph node that was removed, Dad went to Germany for a PET-CT, which came back clean.
Then he had a second surgical procedure to clear out the rest of the lymph nodes in that area (since, as far as I know, a PET-CT isn't exactly reliable for lymph nodes), and they found metastases there too (we don't have the official report in hand yet, so we don't know the exact results). According to the surgeon, there's nothing left to surgically remove; it's all been taken out, so now we're just waiting on an oncology consultation to figure out the next steps for treatment.
I should mention that my dad hasn't had any lasting side effects from the surgery; he’s in fantastic physical shape, and you wouldn't even realize he's sick just by looking at him.
How many of you have experience with the reliability of a PET-CT?
And how many of you have dealt with malignant melanoma and its treatment?
Is chemotherapy not recommended? What about Interferon?

A PET-CT can be incredibly unreliable because it tends to light up even where there's nothing there—like if a person just has some scar tissue. A lot depends on who is interpreting the scan and how much experience they actually have.
The most common therapy is Interferon, but I'd suggest checking here and here to see if you can find any open clinical trials for melanoma and try to get your dad enrolled in them.

My condolences, Gordana. 😢

Gordana, my dear.

I would like to ask for one more clarification. My husband’s diagnosis is Adenocarcinoma coli G2 Dukes B. During a conversation with an acquaintance (who has ties to the medical field), I was told that the issue lies within that "G2" designation. What does that actually signify? I have searched everywhere for explanations regarding the Duke scale, but nothing for this specific part. Can anyone help?

Thank you in advance.

Kimberly Cox58 said:I’m hoping someone can clarify something for me. My husband was diagnosed with Adenocarcinoma coli G2 Duke scale B. I was talking to an acquaintance of mine who works in medicine, and they suggested that the "G2" part is where the real issue lies. What does that actually mean? I've searched everywhere for explanations regarding the Duke scale, but nothing specific about this. Any help would be appreciated.

Thanks in advance.

This refers to histopathological grading, which basically measures how differentiated the cells are. G2 means moderate differentiation. It’s not exactly great news, but honestly, it could have been much worse. This grade essentially describes how much the malignant cells still look like healthy tissue from that same area. The less they resemble normal cells, the more aggressive things get.

nimblepanther14 said:So, I just got back from that meeting today... and honestly, he laid everything out perfectly. He covered every single option, all the potential risks, and even walked through those "what-if" scenarios. Seriously, hats off to him—he really nailed it.
So, they're planning to go in and take out both tumors during a single surgery. One operation to rule them all.
Wait, now I'm curious—it totally slipped my mind to ask...
What are the odds that a Warthin tumor could actually be a byproduct of follicular issues? I mean, is there any chance they just happen to show up independently of one another?
If we're talking about a malignant follicular tumor, what does that actually mean in plain English? My doctor mentioned that it’s spreading into the neck area, but he also said that treating it with radioactive iodine should be fine. Was he just saying that to keep me from panicking?
Wait, if thyroid hormones can spread through the bloodstream or lymph, then why wouldn't follicular tumor cells do the exact same thing? Why wouldn't they just hitch a ride and latch onto something else somewhere else in the body? ...Ugh. Honestly, I’m not even sure I want to know the answer to that. But actually... yeah. I really do.

First off, my deepest condolences regarding your sister.
Warthin tumors are actually BENIGN. They're built entirely from oncocytes—that's all they are!
Within the mitochondria, you'll find lymphocyte follicles.
It is absolutely critical that the tumor is removed entirely; if you leave even a trace behind, you're just asking for a recurrence.
It’s actually quite interesting—the smaller the salivary gland tumor, the higher the likelihood that we're looking at a malignant process. And for the record, this has absolutely nothing to do with the thyroid.
When we're talking about follicular tumors, you absolutely have to make a distinction first: were we dealing with a minimally invasive type, or the widely invasive kind? It’s a massive difference.
Regarding the spread—I already covered that in my very first post. We’re looking at involvement in the lungs, the skeleton, and muscle invasion into the trachea, not to mention the lymph nodes.

Jamie Chase Asks:
Hey there!
Her back was hurting so bad that she went to physical therapy, where she worked up quite a sweat. Then, while walking home and cooling off, she ended up catching pneumonia. On top of all that, she’s dealing with bloating and this nagging discomfort in her lower abdomen. She went in to get her intestines checked out—did a colonoscopy, and they found diverticula. They also did some tests to check for fluid buildup in the body. She’s been taking certain pills and everything. She had imaging done on her stomach and small intestine too, but nothing turned up there. Then she went through ultrasound and a gynecological exam, and still, absolutely nothing. In the middle of all this chaos, they discovered gallstones, so she had surgery for that. Between the X-rays, ultrasounds, and everything else, I’m going to post the images of the findings below. Is there any hope that it hasn't metastasized? And what makes more sense: go straight to surgery to see what's actually happening, or do chemo first and then operate?
Please find the content below.

Are the results definitely pointing toward a tumorous process on the ovary?
I haven't seen the results from the MSCT of her chest and abdomen yet. If she hasn't had that done, she really should.
And we really need to take a look at those pleural effusion puncture results—and don't even get me started on the ascites. We need the full picture.
And don't forget—laparoscopy is also on the table.
Has anyone here actually gone through an EGD/gastroscopy?
Regarding her treatment, she really ought to be taking Fursemide + Aldactone. It’s absolutely critical that the dosages are constantly adjusted and fine-tuned based on her blood pressure readings, along with her potassium and sodium levels. No guesswork here—it has to be precise.

Hrvoje, he says the fluid cytology came back negative for malignant cells.

Need some urgent help here. 😢

A family member just had a chest X-ray and a CT scan. They found a 33x17mm mass on the right lung suspicious for a primary process, plus two smaller nodules at 9mm and 8mm that look like secondary changes. The doctor thinks surgery, chemo, or both will definitely be necessary.

Does "secondary changes" imply suspicion of metastases? And can metastases actually show up on the same organ as the primary tumor? I don't have the full report handy, so I can't say much from this alone. Does having both primary and secondary lesions in the lungs mean those secondary ones are likely metastases from the first, or could there be a second primary process elsewhere?

Is there any way to skip a bronchoscopy during further diagnostics? For reasons I can't quite grasp, the patient is terrified of it.

The pulmonologist appointment isn't for another three weeks, and we absolutely cannot wait that long.

I also need an urgent recommendation for a top-tier pulmonologist in a major US city, and ideally an oncologist who sees patients privately.

Thanks so much.

Secondary means metastasis, which can happen within the same organ—like cancer jumping from one lung lobe to the other. Any other scenario, such as a brand-new primary tumor, requires specific diagnostic testing to confirm. Unfortunately, they won't move forward without a bronchoscopy, but honestly, it’s not as big a deal as people make it out to be. Most folks just let their prejudices get the better of them; they approach these exams with so much hesitation and discomfort that they end up making things harder than necessary. As for a private pulmonologist, I'm not sure, but there is an oncologist named Cepulic. In our healthcare system, for whatever inexplicable reason, oncology treatment for lung cancer patients is almost always handled exclusively by pulmonologists. Your best bet is to call Jordanovac and ask for the head nurse, Jasan Karabatic. She actually heads up the association for patients dealing with lung cancer and is looking for advice given the ten-week wait times. She's available from 7 to 3 on weekdays, so you might have better luck reaching her toward the end of the shift.

Angela Wright said:Secondary means metastasis, and it can happen within the same organ—like moving from one lung lobe to another. Any other scenario, like a new primary tumor, requires specific diagnostics to confirm. Unfortunately, they won't move forward without a bronchoscopy, though it’s really not that bad. People just have preconceptions and get anxious about it... that's why they hesitate. As for a private pulmonologist, I'm not sure, but there is an oncologist named Cepulic. Around here, for some reason I can't wrap my head around, oncology treatment for lung cancer patients is almost always handled exclusively by pulmonologists. Try calling Jordanovac and asking for the head nurse, Jasan Karabatic. She runs the association for people living with lung cancer and might have advice regarding that ten-week wait. She's there from 7 to 3 on weekdays; maybe try reaching out toward the end of her shift.

Thanks so much for the quick reply.

I know a bronchoscopy isn't scary, but I'm struggling with how to convince her. She's 71 and dealing with some mild dementia; she just doesn't realize how serious this is... I'm hoping the pulmonologist can handle it.

I was thinking about reaching out to Dr. Ivan Cucic privately tomorrow, but I don't know if anyone has worked with him. I also saw that Lacic Clinic offers pulmonary exams and multi-specialty consultations involving oncologists, but I'm not sure which specialists they partner with. Anyone have leads?

So, basically, don't expect a joint pulmonologist-oncologist consultation...

Is there any chance those lesions on the CT aren't malignant? I assume not? 😢

This is my aunt. She doesn't have kids and has been like a second mother to me my whole life... she's everything to me.

Look, if we're talking about a microcellular cancer that's aggressive and spreading fast, I wouldn't just sit around waiting. It’s entirely possible those shadows are something else entirely, but honestly, without a PhD level of expertise, you aren't going to get any real confirmation. Given your age and your overall health, if the worst-case scenario is true, I’m telling you straight up: you’re going to need an incredible amount of wisdom and mental toughness to navigate the decision-making process for your treatment.
First, go see Sandra—and there's a good reason I'm suggesting her—then, if you still feel like you need more answers, start calling around to private specialists.

Angela Wright said:Look, if we're talking about a fast-moving microcellular cancer, I wouldn't just sit around waiting. Those shadows might be something else entirely, but you can't know for sure without a PhD's input. Given her age and overall health, if the news is bad, you're going to need a massive amount of wisdom and strength to make the right call on treatment... just being honest with you.
Check in with Sandra first (there's a reason I'm suggesting her), then if you really need to, start calling private specialists.

There’s no way we can wait. She needs to see a pulmonologist within the next two or three days, if at all possible.

She's actually doing quite well physically, aside from being diabetic—on insulin—and having high triglycerides. She isn't feeling any symptoms at all; this was just a fluke discovery because an X-ray was ordered due to pneumonia.

I'm bracing for impact... I've already lived through three near-death experiences with cancer—my dad, a close aunt, and my aunt's husband just two years ago—but those were all different types. I have no idea what we're dealing with regarding lung cancer, and there's zero time to play researcher.

Thanks anyway. We'll reach out to Sandra. 🙂

It’s possible it could be pneumonia. They’ll probably have her come back in for another X-ray, which is likely why they left that three-week gap... I don't know. Honestly, I don't think it's right that they haven't explained anything to her.

Angela Wright said:It could be pneumonia. They’ll probably need to repeat the X-ray, which is why they left that three-week gap... who knows. Doesn't seem right that nobody explained anything.

It looks like the staff at the desk just scheduled her three weeks out without even checking with a pulmonologist. She didn't know how to handle it, so she just grabbed the results and took them to her GP instead of insisting on being seen urgently. So now we're stuck. No one was there with her, which was a mistake. This isn't some Small town, USA situation; this is the Local Credit Union. We really should go back there with her and demand she see the specialist sooner, but neither my brother nor I can make it this week because of work. We'll probably have to find a private appointment sometime this afternoon... and just use the doctor at the Local Credit Union as a second opinion in three weeks.

We'll see. Thanks.

Just head down to that Small town, USA; they’re the most qualified people for this kind of thing, and from what I know, you won't be stuck waiting more than a few days for urgent matters like this.

Angela Wright said:Just head to the Small town, USA clinic. They’re the experts on this stuff, and if it’s an emergency, they don't make you wait more than a day, from what I know.

It'll take me some time to convince her... unfortunately. She heard through the grapevine that people in that Small town, USA aren't great, and she has this habit of believing everything she hears and then stubbornly sticking to it.

We won't be making any treatment decisions without consulting Sandra first. But given her biases, it might take me a couple of weeks to steer her toward the clinic in Small town, USA. Honestly, I'd rather just pull her away for a private consultation—maybe with someone highly rated who also works at the Small town, USA clinic. If she actually likes them, things will go much smoother...

I underwent surgery for adenocarcinoma back in November 2012. I barely made it through four separate operations.
1- The first was a Whipple procedure where they reconstructed my ducts, removed about two-thirds of my pancreas, part of my stomach, and my gallbladder, though they kept the entire bile duct intact. They connected the pancreas to the stomach, the liver to the small intestine, and the small intestine back to the stomach.
2- A second operation due to bleeding complications.
3- Another operation for bleeding complications.
I don't remember anything from those first 4 or 5 days. People tell me I was talking to them, but my brain probably just blocked it out—thanks for that, brain.
4- An operation to deal with a gastric hematoma.

Spent 25 days in the ICU without any food or water by mouth; I dropped 30 kg.
On day 26, I was relearning how to walk.
On day 28, they pulled out the feeding tube that went through my nose.
Day 30, I finally went home.
I spent another 15 days just lying there. My bowel movements returned naturally, and I managed to walk 100 meters on my own.
By day 60 post-op, my appetite came back, my digestion stabilized, and I had enough strength to walk a mile if I needed to. I actually gained 4 kg.

Ninety days after the surgery, I started chemotherapy following the Mayo Clinic protocol.
Today, I finished my first cycle of chemo.

To be honest, the situation is pretty rough. I’m dealing with pain, likely from adhesions in my intestines and stomach. My liver is damaged, but it’s recovering.

The meds I’m taking:
Creon pancreatic enzymes
Reglan for nausea
Aspirin for acid issues
For the last two days, I've been using ibuprofen for the pain; if it gets worse, they'll move me up to morphine.

As for supplements, before starting chemo, I began taking these based on my doctor's recommendation:
A vitamin complex
Silymarin
And glucan

The plan right now is just to survive the first five years. After that, we'll make a new plan. In the coming days, per advice from the US doctors, I need to get my will in order and sort out my finances.

Oh, I forgot to mention—the cancer was detected between stages 5 and 12, and it had already reached the pancreas, essentially infecting it initially (not sure exactly what that implies).
The tumor site was 1.2 x 1 cm in the bile duct near the pancreas. To put it bluntly, I had more luck than I deserve.
Huge thanks to Dr. Smith, who caught the cancer in time.
And thanks to Professor Smith for his humanity, his expertise, and for a successful surgery.
My thanks also go to the wonderful, kind, and sometimes not-so-kind nurses in the shock rooms where I stayed.
And thanks to the amazing nurses in the OR. I only remember the first surgery, but I'll never forget that extra heater they set up just for me.
Honestly, everyone treated me with such kindness and dignity that I can't even put it into words. No one would take a dime from me; when my family tried to offer, they actually got offended.
Professor Smith is such an incredible person; words can't describe his devotion. After the surgery, he visited me every single morning and afternoon, whether it was a workday or the weekend. He was even there on Sunday mornings. When he finally discharged me, he told me, "I have done everything in my power; now you are in God's hands." I heard from others that he felt a huge sense of relief when I finally stood on my own two feet. I dealt with absolutely every complication that comes with this brutal surgery, yet even today, the doctors see me without appointments or waiting in line.

I'm writing this in the section for Support for Families Dealing with Malignant and Other Serious Illnesses.
Technically, I am my own next of kin.

wearytrucker22, sending you all the strength, luck, and healing in the world...

vividsailor7 said:Do the results definitively point toward a tumorous process on the ovaries?
I haven't seen the CT scans for the chest and abdomen yet; if she hasn't had them done, she really should.
Furthermore, we need to review the findings from the pleural effusion puncture and the ascites.
Laparoscopy is also being considered as an option.
Has an EGD/gastroscopy been performed?
Regarding therapy, she should be taking Furosemide + Spironolactone. Doses must be determined or adjusted based on blood pressure, potassium, and sodium levels.

After two separate tests, the fluid results came back negative for tumor cells.
Her surgery is scheduled for tomorrow; please wish us luck.
p.s. I still can't wrap my head around how three gynecologists, three ultrasounds, plus a Pap smear yielded absolutely nothing.🙂

Jamie Chase said:After two rounds of testing, they're saying the fluid didn't show any tumor cells.
She’s heading into surgery tomorrow, so please keep us in your thoughts.
p.s. I still can't wrap my head around how three different gynecologists, three ultrasounds, plus a Pap smear, all missed this.🙂

A Pap smear is strictly for detecting changes on the cervix. It won't pick up anything happening in the ovaries or anywhere else in the abdominal cavity.