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

Raymond Smith53 said:That’s way too long of a wait. Is the machine broken or what? And what do you mean by "abdominal markers"? Be specific about which ones. There’s no such thing as just "abdominal markers"—that's way too vague a term.

I'm talking about cancer markers that target organs within the abdomen. For example, CA 19-9, CEA, CA 72-4, or AFP.

They’re probably waiting on a PET scan. There are only two or three facilities in the entire US that handle them, so that explains the delay.

Here are the CT scan results; I've attached the image. What does this actually mean? What are the chances for treatment? Specifically, is it even operable at this stage, or will they start with chemotherapy to try and shrink the metastases first?

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To be perfectly honest with you, this set of results is a complete mess. If we’re going to sit here and debate whether something is "operable," we actually need to know where the primary tumor is located. Did they include any more detailed information at the end of the report? Based strictly on what’s presented here, I can't pinpoint the origin—though, if you ask me, the liver seems to be the most heavily affected area—but unfortunately, it looks like it has spread everywhere. Lungs, lymph nodes in both the thorax and lower regions, the liver, the bones... looking at these findings, the most significant changes are in the abdomen, so the primary tumor is likely situated there. Tumor markers themselves aren't exactly the gold standard for reliability, certainly not at the onset, and even less so once everything has started spreading. It’s incredibly difficult to target chemotherapy effectively against metastases when you don't even know what exactly is metastasizing. I have to say, speaking as a layperson, this situation looks extremely grave to me. I'm still struggling to understand why there was such a massive delay; from what I can gather (unless I'm mistaken), you only had a standard CT scan done rather than a PET scan. In my experience, for emergency patients, a standard CT is usually performed almost immediately—which is precisely why one should insist on hospitalization in severe cases if the doctors don't suggest it themselves. At least, that was certainly the case for me, but I suppose that’s the least important part of this whole ordeal right now...

Raymond Smith53 said:To be perfectly honest, these results are a total mess. To even discuss whether something is "operable," you have to know where the primary tumor actually is. Did they write anything more at the end of the report? Based on this, I can't see where the primary site is located (though personally, the liver looks most affected), but unfortunately, it seems to have spread everywhere. Lungs, lymph nodes in both the chest and lower areas, the liver, bones... Looking at what’s written here, the most significant changes are in the abdomen, so the tumor is likely there. Tumor markers themselves aren't particularly reliable anyway, especially not at the beginning, and certainly not once everything starts spreading. It is incredibly difficult to target chemotherapy at metastases if you don't even know what originally metastasized. I hate to say it, but as a layperson, this situation looks extremely serious to me. I still find it strange that you waited so long, because from what I can tell (if I'm not mistaken), you went for a standard CT rather than a PET scan. In emergency cases, a standard CT should practically be done the same day (which is why one must insist on hospitalization for severe cases if the doctors don't arrange it themselves). At least that was my experience, but that's the least important part of the story right now...

And perhaps you were just lucky in your case. (Forgive me, I'm not sure if you are male or female.)
From what I've been following, the father-in-law of our forum member has been hospitalized, and given the hospitalization, this is the fastest they could manage to get things moving. They are in San Francisco, and I had an identical experience with the waiting games and delays—even just for a standard CT in Chicago. Over the course of three and a half years, my mother had to go to a PET-CT that doctors from the Cancer Institute sent her to last year, after the people over at Jordan for three years couldn't manage it despite all our efforts. The folks at the Institute were absolutely livid about the whole thing and couldn't say enough bad things about the ones at Jordan, while those at Jordan were actually perfect and I'm grateful to them for a hundred other things. Not to mention our experience with the hospital in New York, where they couldn't even manage to set a diagnosis; instead, they wasted months rambling about fatty deposits on the neck when we were clearly dealing with metastases fused to the cervical nerves.
Given that, I think your assessment regarding the wait is a bit harsh toward someone who is new to this world, especially considering they only managed to convince the father-in-law to see a doctor after a month. You can't exactly dictate terms to a man who is still of sound mind, and naturally, he attributes his pain to his own age, much like most older people who are aware of their "expiration date."

@Linda Fox2/">@@Linda Fox2: The fact remains that these results are a chaotic mess; you know it has spread, but you don't know exactly what you're fighting. If chemo is used, it will be palliative chemotherapy—the kind intended to extend the patient's quality of life for as long as possible and, of course, reduce the metastases. For the bones, maybe radiation could be an option, though I doubt it given the description in the findings. As for surgery—it isn't clear from the report where the primary tumor is, so there's no way to know what would theoretically even be operated on. Furthermore, without a concrete diagnosis, I don't see the point in sending a sick person to Chicago, unless you have specific connections there to pull strings so the results come back faster or something. If this is colon cancer, the whole situation looks grim. I haven't dealt with that specific type of cancer, but if you are going to send your father-in-law somewhere, look into the doctors' reputations rather than just aiming for Chicago and gambling on whoever happens to take you.

My observation regarding the wait times wasn't actually a direct shot at them—because if you ask any patient or their family, they’ll tell you everything feels like it’s moving at a snail's pace—but rather at the people who were supposed to have everything scheduled and ready on time. To be specific, I completely get why there's a delay with the PET scan; it all comes down to the logistics of handling radioactive tracers that decay incredibly fast. In our area, we rely on Pfizer to deliver these, and they only send a handful—maybe seven or eight doses a day per machine—simply because of the material's half-life and the fact that the entire procedure takes quite a while to complete. I’ve been through the PET scan myself, I've done my homework, and I know exactly where the bottleneck lies. On the other hand, getting a standard CT scan is usually a breeze without any issues. That’s really the heart of what I was getting at.

Raymond Smith53 said:My observation regarding wait times wasn't directed specifically at them—because if you actually ask the patient or their family, they’d say it’s always "immediately"—but rather at those who were supposed to get things done on schedule. To be precise, I understand why there's a wait for a PET scan; it comes down to the logistics of radioactive tracers that decay incredibly fast. In our case, they're delivered by Pfizer, and they only supply a handful of doses—maybe seven or eight—per machine per day, strictly because of the material's half-life and the fact that the entire procedure takes quite a while. Having been through a PET scan myself, I've talked to people and I know exactly where the bottleneck lies. A standard CT, on the other hand, can be performed without any issues at all. That’s why I wrote what I did.

Sure, a standard CT can be done immediately—granted—but it really depends on the hospital. Unfortunately, our healthcare system is in such a state that you sometimes find yourself waiting even for the simplest procedures. Honestly, my mother was treated as an inpatient and still had to wait three weeks just for a CT scan. When she needed follow-up CT scans, they would sometimes schedule her six to eight weeks out, even when going through internal hospital referrals. I don't want to badmouth doctors; I believe there are good, bad, and mediocre ones everywhere, just like anywhere else. But the reality remains: our healthcare system is fundamentally broken in certain areas, and patients are the ones paying the price.
When I was in Austria, I needed an MRI. I booked it on Thursday afternoon for Sunday morning. Usually, when dealing with state-run healthcare, there are no special connections required and no out-of-pocket costs; everything is handled with a basic referral. I had my results within two days. The entire system is organized differently over there; it certainly has its own flaws and shortcomings, but when you need an exam, you get it almost immediately.

Thanks to everyone for the input. Just like Rachel Williams mentioned, my father-in-law has been hospitalized for two weeks now, but things move incredibly slowly here. Honestly, I don't get the plan to wait until next week for a colonoscopy, then wait another two weeks for results before even starting treatment. I'm terrified this could progress further, and the situation isn't looking good at all. They told my husband that the primary tumor is in the large intestine. We were thinking about seeing a private oncologist in San Francisco for a second opinion and then heading to Chicago, but I still have no clue where to go! Does the Cancer Clinic handle cases like this?

Here is the conclusion from the CT scan:

And listen, you all. A second opinion when dealing with a tumor is never a bad thing. In fact, it’s actually encouraged, but the real issue here is that there isn't even a first opinion established yet. At least, that's how I've gathered it, unless I've somehow completely missed something.
Now, the logical next step would be to head in for a colonoscopy to figure out what kind of course of action should actually be taken. This whole situation has spiraled a bit too far. It's honestly strange that he hasn't been feeling any symptoms or discomfort.

The primary tumor is located in the large intestine. We need to perform a colonoscopy for two main reasons: first, to take a biopsy for histological and molecular analysis, and second, to ensure the passage is clear enough for the equipment. If everything looks okay, surgery isn't necessary right now; our first move would be chemotherapy combined with biological therapy, depending on what those molecular tests reveal. However, if there's a blockage, we'll have to proceed with surgery to prevent an intestinal obstruction, which would become an emergency.
I’d also consider radiating those osteolytic changes in the pelvic bones.

Is waiting two weeks for colonoscopy results before starting treatment considered too long in a case like this? Does anyone have recommendations for a specific doctor or clinic in Chicago I should contact? Also, generally speaking, what are the odds for my father-in-law given this diagnosis?

The colonoscopy results are ready today, but we're looking at about a 7-day wait for the pathology report (though maybe we can nudge them if we push hard enough). As long as my father-in-law isn't having any issues with bowel movements, waiting an extra 2 or 3 days for the final word won't change much. Unfortunately, his illness has progressed quite far, and there's no chance for a cure. Combining chemotherapy with biological therapy might slow down the progression and extend his life, provided he responds well to it.

I don't have any questions regarding the test results or the prognosis—that’s unfortunately already a closed chapter at this point—but if anyone could share how they cope with the crushing realization that things might have gone differently had the doctors handled the patient's treatment differently... maybe that would help us.

My aunt underwent surgery for breast cancer 3.5 years ago; she had a mastectomy and completed radiation, though they decided chemotherapy wasn't necessary.

Throughout that entire period, she dealt with persistent back pain—initially in her shoulders, then moving to her lower back, and eventually spreading through her entire spine. The doctors simply advised her to lose about 20 pounds and stay active. No further diagnostic testing was ever performed.

Six months ago, she broke her arm near the shoulder. Given her history with breast cancer, they scanned that area more thoroughly and expressed suspicion of bone metastases, telling us she absolutely needed to go to the hospital in Chicago once she returned home (since the fracture happened in another city).

To make a long story short: metastases throughout the entire spine and all bones. As of last month, there are metastases in the liver as well. We sought multiple opinions, but the doctors all give us the same prognosis—one year maximum.

Breast cancer runs very deep in our family; my mother also had it, and besides the mastectomy, she went through chemotherapy, and she's been fine for 14 years now. However—and this is the part that sticks in my throat—my mother was given a bone scan after her treatment, but my aunt never was.

How do you live with the fact that all of this might have been avoided? That perhaps, with timely intervention or a different approach, the outcome wouldn't be this?

This is hitting our whole family incredibly hard. My mom is with her constantly because her mobility is failing, and it's really just a matter of time before she can't walk at all.

I am pregnant right now, which makes the emotional detachment so much harder—it's an impossible weight to carry. Even though I’m a realist and not someone prone to depression, I just cannot reconcile with the idea that this could have ended differently.

Kate Wells44 said:The colonoscopy results come back the same day, but we're looking at about a week for the PET scan (maybe we can push them if we insist). If your father-in-law isn't having any issues with bowel movements, waiting an extra 2-3 days for the results won't change much. Unfortunately, his illness has progressed quite far, and there's no chance for a full cure. Chemotherapy combined with biological therapy might slow down the progression and extend his life, provided he responds well to it.

Down here in San Francisco, they told us the PET scan would take two weeks. For now, he isn't having any trouble with bowel movements. So, you're saying there's no hope for a full recovery?! How much longer can we realistically expect him to hold on, assuming he responds well to the chemo? Also, what exactly does biological therapy entail?

One more piece of advice if you don't mind—it's clear you all know your stuff regarding this. Where in Chicago would be the best place to receive treatment in a case like this?

Reddit thanks.

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@Linda Fox2 I am not entirely sure where the absolute best place to seek treatment in Chicago is, but if you are looking for a second opinion or perhaps just some guidance and direction, I would highly recommend Dr. Cepulic in Chicago. He runs a private practice, and I believe consultations run around $200. You are welcome to bring whoever you need if they are up for it, though you can certainly go alone as long as you have your medical records in hand. The man actually takes his time; he explains things thoroughly, and he is truly worth every recommendation.
Prognoses are such an ungrateful thing to deal with—you can find just about anything online, but one must remain aware that a prognosis is nothing more than a statistic. So much depends on the patient's own willpower and mental fortitude in a situation like this. My mother actually beat the odds for about 80% of people in her exact position, but then again, she was incredibly stubborn and unshakeable. She had a difficult life from puberty all the way until the end, so she viewed this as just another hurdle to clear. Last winter, she told me she viewed that cancer as nothing more than a common flu—fine, it’s here, it isn't going away, but I won't let it touch me any more than necessary.

@velvettrucker7 if you ever discover a way, please let me know... while my mother was still alive, I focused entirely on being happy and grateful for what we had. I tried to be by her side as much as humanly possible. If it hadn't been for my pregnancy complications, I wouldn't have been able to be there when she passed, and for that, I am thankful. From here to eternity, I regret that she didn't get even a few more months to see her grandchild arrive, because I know how much she looked forward to that. As for whether I will ever reconcile with the sheer irresponsibility and negligence of certain doctors—I honestly don't know. I’ve written about this before; Mom did her annual check-ups—chest X-rays, ultrasounds, mammograms—because she had stage 97 breast cancer (mastectomy, chemo, radiation), and everything seemed fine until one year they found "something" in her lungs. For the next years, they kept insisting that "something" was just a scar from tuberculosis (neither she nor anyone in our family remembers ever having TB, but the doctor immediately points to that as the cause). Her cough was "surely due to GERD," her nail issues were "surely fungal," the pain in her shoulder was attributed to spinal problems, and for about a year to eighteen months, the lumps on her neck were dismissed as enlarged lymph nodes or fatty deposits that "didn't even require a biopsy" (this involved several different doctors at the Lung Clinic and at the Rib, so it wasn't just one person messing up). After losing a few years, here we are at Jordan, where that "scar" has turned out to be Stage IV lung cancer, with neck metastases fused to the nerves; the cough, the shoulder pain, and the nail issues were all symptoms of lung cancer. That was only the beginning of the "it could have been different" nightmare, which all unfolded over three and a half years, but I won't go into further detail... Even if I had the money to sue them and drag them through the courts, it won't bring my mother back. Tomorrow would have been her 62nd birthday if she were still here; in three months, it will be two years since she's been gone. I am becoming increasingly convinced that you simply learn to live with this cocktail of grief, bitterness, disappointment, and mistrust, but it is something that never truly disappears.

I’d also highly recommend Dr. Cepulic. If you take his findings to him, he was honestly the only one who actually wanted to help in my father's case without us having to practically drag Dad out of the hospital where he was already a patient.
He gave us the straight truth, even if it wasn't exactly what I wanted to hear. Honestly, I didn't regret spending the money, even though there wasn't much more he could do at that stage.
Regarding San Francisco, back when I was scheduling a CT for Dad (way before the diagnosis, when he still thought it was just spinal issues), the wait times there were absolutely insane—we're talking like four years!?!? That is just terrifying to me. And everywhere else, the wait is brutal unless you're an inpatient; Dad finally got on the list for a CT after six months, which was two months after the diagnosis, and that was only a week after he had already undergone an emergency CT while hospitalized. It’s truly awful.
I can't check the usernames properly on my phone right now, but to the person wondering if it makes sense to dwell on whether something could have been done sooner: I think any sane person would tell you no. Don't do that to yourself. You won't help the person who is sick by spiraling, but you will absolutely hurt yourself mentally (and quite often, physically, just like it happened to me).
Instead, try to redirect that energy toward how you can support your aunt now, given everything she's going through.
Hang in there, everyone!

I reached out to the Chicago Cancer Clinic today and sent over my father-in-law's CT scan. They got back to me pretty quickly, telling us to check in with the head nurse tomorrow to coordinate transferring him there for treatment. Has anyone here had any experience with this clinic?

I have a feeling his pathology results would come back fast since they have a dedicated department just for that. Honestly, it can't be any worse than what we dealt with in San Francisco. But, since there are definitely better options out there for treating cases like my father-in-law's, I’d much rather get him to the right place.

@Crazydiamond2, my dad had colon cancer and underwent surgery back in 2014 at the Holy Spirit Hospital in Chicago. Honestly, I can't say enough good things about the care they provided.

I won't bore you with all the gritty details, but after a long string of scans and colonoscopies that—unfortunately—failed to pinpoint the actual issue, we ended up in the ER at Holy Spirit. He was dealing with intense pain and bleeding, and we were just at our wits' end because other doctors kept insisting on sending us home.

As luck would have it, Dr. Davorin Velnic happened to be on duty that day. He saw what was happening immediately and jumped straight into action. I’ll never forget the massive sense of relief we felt once someone finally started taking concrete steps; we are eternally grateful to him for everything he did for my dad. He took a biopsy right away, and while we waited for the results, he coordinated the necessary tests. Within two weeks of the findings coming back, Dad was hospitalized. They ran a few more diagnostics there, and he was in surgery within a couple of days. After that, he was referred from Holy Spirit to the Cancer Clinic for radiation and chemo (our doctor there was Hrvoje Sobat), and based on our experience, those folks are top-tier as well.

I don't know the specifics regarding your father-in-law, and I assume every case is unique—his treatment path might look completely different. What I do know is that this whole thing is a grueling, long process for everyone involved. Beyond finding excellent doctors and maintaining a positive mindset, a lot of variables have to line up perfectly. Still, it was such a weight off our shoulders when we finally knew we were in the hands of someone doing everything possible, even though the ultimate outcome remains uncertain regardless of how good the care is.

Good luck, and hang in there.

@Crazydiamond, I don't have any personal experience dealing with that specific type of tumor, but based on what I know about other cases handled at the Cancer Institute, I wish you nothing but the best. It really all depends on which doctor you end up with; some can be incredibly knowledgeable, while others tend to be cold, detached, or just plain blunt. Still, they are undeniably efficient and proactive. Personally, if I were back in the States after everything we've been through, they would be my very first choice for treatment.

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Betty Clark95 said:Linda Fox2, my dad had colon cancer and underwent surgery back in 2014 at the Holy Spirit hospital in Chicago. I honestly can't say enough good things about them after everything we went through.

I won't bore you with all the gritty details right now, but after a long stretch of tests and colonoscopies where they unfortunately couldn't figure out what was actually wrong, we ended up at the Holy Spirit ER. He was in terrible Pain and having bleeding episodes, and we were just at our wits' end because other places kept stubbornly sending us home.

By total chance, Dr. Davorin Velnic happened to be there that day. He realized immediately what was going on and jumped straight into action. I’ll never forget the massive sense of relief we felt when someone finally started taking concrete steps. We are eternally grateful to him for everything he did for my dad. He took a sample right away, and while we waited for the results, he organized all the necessary screenings my dad needed to get done in the meantime. Within two weeks of getting those results, he was hospitalized. Once there, they ran a few more tests and operated within days. After that, he was sent from Holy Spirit to undergo radiation and chemo at the Cancer Clinic (our doctor there was Hrvoje Sobat), and based on our experience, I have nothing but praise for them too.

I don't know what the situation is with your father-in-law; I assume every case is unique, and his treatment plan might be completely different. What I do know is that this whole thing is a long, grueling process for everyone involved. Aside from finding excellent doctors and maintaining a positive mindset, a lot of things have to align perfectly. But for us, it was such a huge relief when we finally knew we were in the hands of someone doing everything possible in the moment, even though the final result could still be bad regardless of the effort.

Good luck and hang in there!

Thank you for sharing your story. It’s exactly like you said—I keep thinking about it, and I just want to know that we did everything we could to get him into the right hands, because that factor makes such a huge difference. That's why we aren't looking to stay in San Francisco. I don't believe my father-in-law will fully recover since it has spread quite a bit, but if we can buy him a few more years of quality life with his family, we would gladly do it.

I'm waiting for my husband to let me know how his talk goes with Dr. Glavan (the surgeon) over at the Cancer Clinic, then we'll see what they say.

Rachel Williams said:Linda Fox2, I don't have any experience with that specific type of tumor, but based on what I know about other types at the Cancer Institute, I wish them all the best. Depending on which doctor you end up with, they can be incredibly knowledgeable but also pretty cold and blunt, though they are definitely effective and proactive. Personally, if I were back in the States after everything we've been through, they would be my first choice for care.

Thanks, Rachel Williams 🙂 I actually really liked the approach at first. For instance, I received an email at my father's primary contact address—the one used for patient intake—from a ward nurse saying Dr. Glavan had already reviewed his CT scan and that we’d be contacted tomorrow to coordinate the transfer. It was a very professional, serious approach, which is honestly how things should be handled everywhere. I’m hoping we can get him transferred to Chicago as soon as possible.