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

Kate Wells44 said:The primary tumor is in the large intestine. A colonoscopy needs to be performed for two reasons: to take a biopsy for histological and molecular analysis, and to ensure the bowel is clear enough for the scope to pass through. If it is, surgery isn't necessary right now; the first line of treatment will be chemotherapy combined with biological therapy, depending on what the molecular testing shows. If it isn't clear, he'll need surgery because there's a risk of a bowel obstruction (ileus), which is an emergency.
I would also consider radiosurgery for those osteolytic changes in the pelvic bones.

Music spoke with Surgeon Glavan at the Cancer Clinic. She told him exactly what the forum user Ethan Roberts23 wrote: they won't perform surgery at this moment unless he develops a bowel obstruction, which is life-threatening—in that case, they would operate.

So, the plan is chemotherapy following the standard protocol, which is the same across all hospitals, including here in San Francisco. The doctor feels there’s no need to send him to Chicago right now to do the chemo; he'll receive the exact same treatment here as he would at their oncology department, and besides, being local is easier. Plus, doctors at smaller hospitals can sometimes get defensive when you try to transfer patients, acting like they don't want to examine someone just because they're planning to move them elsewhere. 🙄

The doctor also mentioned that he *can* go to Chicago if we want; they would guarantee him a hospital bed on short notice. It's just that she doesn't see the necessity of doing that right this second.

So, what's our next move?

Raymond Smith53 said:You’ll see everything once you sit down with the neurosurgeon. Prognoses are inherently thankless, especially when we're talking about the brain. Just because you aren't sleeping well doesn't mean there's any correlation at all.

Just checking in here. On the image, those lesions are pitch black. It looks like they cover about a third of the surface area. The neurosurgeon decided he isn't going to intervene right now, so we're just going to wait a year and see if that area has expanded. He mentioned there's no blood flow in that specific section. In my own head, I've translated that to mean that part of the cerebellum is essentially dead,
and I have no intention of scouring the internet for data on what this actually means.
I just want to get some peace and sleep; whatever happens, happens.

Linda Fox2 said:So, what’s the next move?

Look, that’s just how the system works. That is precisely why you were asking who to contact for a second opinion in the first place. In American hospitals, everything is strictly driven by protocol, and frankly, there is a certain level of resistance—not just in small local clinics, but even among specialists within the massive university hospital systems—when it comes to transferring a patient unless there is an absolutely undeniable medical necessity. Ultimately, the choice rests entirely on your shoulders; you’re the one who will have to live with the consequences of whatever path you take, not us.

Linda Fox2 said:So, what's the move now?

What is your father-in-law's actual mental state right now? How much does he even understand about the diagnosis? People often struggle to handle chemotherapy, so perhaps being in a familiar environment might make things slightly easier for him. If you were to move his care to Chicago, would anyone actually be able to visit him at the hospital at least every other day? Just looking at the logistics—I highly doubt they’d keep him hospitalized between individual chemo cycles, so how difficult or easy would it be for you to drive him to Chicago for every single cycle? Where would he stay during those gaps? And if he stayed home in San Francisco, what happens if things go south and you run into some idiot doctor who refuses to see him just because he moved his care to Chicago?

I'm not asking these questions to audit your choices, but rather to give you something to chew on—ideas to help you weigh your options while making this decision. Perhaps looking at it this way will make the "right" path a bit clearer for your family.

Hey everyone!

Could you please let me know if anyone here has had any positive experiences with the Radiosurgery clinic?

Today at the consultations, they told my husband that his father-in-law won't be able to undergo chemotherapy because he's just too weak. We're still waiting on the final pathology report, though. The doctor mentioned she’ll put him on symptomatic therapy and potentially have a surgeon operate, since there's a threat of an ileus—a bowel obstruction—which is life-threatening. But even that isn't a guarantee given how frail his system is. He’s barely eating anything, and the oncologist says there's no point in giving him Megestat since those are basically just dietary supplements, and he’s not even eating enough to have anything to bind to or break down. In short, they've pretty much written him off here. 😢

The family can't wrap their heads around the fact that they haven't even attempted actual treatment. We're calling the Cancer Clinic again tomorrow. Also, does anyone know what the deal is with Avian in Italy? My husband's sister has a contact over there—does anyone know how the treatment process works? From what I've heard, you have to pay for both the consultation and the travel to the hospital?

driftinghawk48 said:Hey everyone!

Could someone please tell me if anyone here has had any positive experiences at the Radiosurgery clinic?

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I actually went in for a consultation at the Chicago Radiosurgery clinic, but they told me that because I have such a high number of tiny metastases, their specific treatment isn't really an option for me right now. Even so, the doctor was incredibly kind and took all the time in the world to walk me through everything and answer every single question I threw at her. From what I gathered, Radiosurgery is more of a specialized tool for when you're dealing with a small number of larger, more superficial metastases. All in all, I was perfectly happy with the consultation and the level of care provided.

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I'm just writing this out to myself, I don't know, just need to vent. They managed to schedule an appointment at Avian on May 30th, and the folks at the Cancer Clinic also said they'll provide a second opinion as soon as the pathology report comes back (in about 10 days), because they can't say anything definitive without it. They'll also bring everyone in to assess his general condition.

But now my husband is calling me saying my father-in-law is vomiting something brown, and the doctor says, based on experience, that it's part of the liver failing. Does that mean he's already in the terminal stage? On top of that, he's been a total wreck mentally over the last two days and says he's in Pain.😢
The question is whether he'll even be physically capable of making it to the appointment at Aviano in five days. Is it even possible for things to go from discovering a diagnosis to being beyond help in just three weeks????

Linda Fox2 said:I’m just talking to myself here, I guess, but I need to get this out. They managed to schedule an appointment at Avian on May 30th, and the specialists at the Cancer Clinic said they’ll provide a second opinion as soon as the pathology report comes back (should be about 10 days), because they can't say much without it. They also mentioned they'll bring everyone in to assess his overall condition.

But now my husband is calling me because my father-in-law is vomiting something brown, and the doctor is saying—based on experience—that it looks like liver tissue. Does that mean he’s already reached the terminal stage? On top of that, his mental state has really plummeted over the last two days, and he keeps saying he's in Pain.😢
The big question is whether he’ll even be physically able to make it to the appointment at Aviano in five days. Is it actually possible for things to go from finding out a diagnosis to being beyond help in just three weeks????

I really hope that isn't the case... Regardless, you're getting a second and third opinion. Personally, I feel like there's always a reason to start treatment and keep pushing for it.

Linda Fox2 said:I’m just talking to myself here, I suppose, but I need to get this out. They managed to schedule an appointment in Aviano for May 30th, and the cancer clinic mentioned they would provide a second opinion as soon as the pathology report comes back (in about 10 days), because without that, they can't say anything definitive. They also said they'll bring everyone in to assess his general condition.

But now my husband is calling me because my father-in-law is vomiting something brown, and the doctor says—based on experience—that it's part of the liver failing. Does that mean he's already in the terminal phase? He’s also been a complete wreck mentally over the last two days, and he says he's in constant Pain.😢
The question is whether he will even be physically capable of making it to the appointment in Aviano in five days. Is it even possible that we've gone from finding out the diagnosis to having no help left in just three weeks?

If he is physically able to make it to Italy, take him. Given the distant metastases, this is undoubtedly Stage IV—the final stage—though every individual's timeline varies. A full cure at this point would, unfortunately, be nothing short of a miracle. At this stage, the goal shifts entirely toward trying to ensure whatever quality of life and pain management remains. I wanted to ask you: what was the basis for the doctors deciding he was too weak for chemo? For instance, some patients have poor blood counts that can be corrected, or they might just need a transfusion, etc. But seeing this vomiting, I suspect it truly doesn't matter anymore... just stay by his side as much as you can right now, and try to distract him from all of this as much as possible.

Rachel Williams said:If he’s up for traveling to Italy, you should take him there. Given those distant metastases, this is undoubtedly Stage IV—the final stage—though survival timelines vary wildly between patients. Honestly, a full cure at this point would be nothing short of a miracle. At this phase, the goal shifts entirely toward making the rest of his life as high-quality and pain-free as possible. I wanted to ask what led the doctors to decide he was too weak for chemo (for instance, some patients have poor blood counts that can be corrected with a transfusion, etc.), but seeing how much he's vomiting, I guess it doesn't even matter anymore... just stay by his side as much as you can right now and try to distract him from all of this as best you can.

We will definitely take him to Italy if he’s able to travel at all.

They concluded he's too weak because his blood work isn't good, apparently. But nobody mentioned anything about a transfusion. They're just giving him antibiotics because his CRP levels are high. To be honest, they didn't even tell them they'd attempt to fix his blood counts. They're just handing out painkillers and antibiotics.

A surgeon came by today; the colonoscopy confirmed that everything is pointing toward a bowel obstruction. He went in to assess whether he should perform surgery, but he backed out. He said he's afraid he wouldn't survive it. So, we wait, though if things get critical, they'll have to operate. The oncologist already said that after surgery, he’d be moved to a palliative care unit. It feels like they've completely given up on him and aren't even trying to do anything meaningful.

And we're just left here, lost, not knowing where to turn or what's even possible to do now.

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Linda Fox2 said:They'll probably fly him out to Italy if there's any way he can travel.

They've concluded he’s too weak because his blood work isn't looking good, apparently. Yet, strangely, nobody mentions anything about a transfusion. They’re just pumping him with antibiotics because his CRP levels are high. To be honest, they haven't even told them they'll attempt to stabilize his blood counts. All they’re doing is handing out painkillers and antibiotics.

The surgeon was in today; the colonoscopy confirmed everything is pointing toward an intestinal obstruction. He went in to assess whether surgery was an option, but he backed out. He said he's afraid the patient wouldn't survive it. So, they’ll just wait—unless things get critical, then they’ll be forced to operate. Meanwhile, the oncologist mentioned that after surgery, he’d be moved to a palliative care unit. It seems clear they've essentially given up on him; they aren't even trying to intervene anymore.

And we're left standing here, completely lost, wondering what direction to turn or what can even be done at this stage.

Look, colon cancer is a sneaky bastard. In the early stages, there are almost no symptoms. For men over 50, prevention means an annual colonoscopy, but hardly anyone actually follows through with that. I see you're active in alternative circles, and regarding that, it's all five stars; the search function on the Forum is finally working, so just look through the posts from the members you communicate with... If the father-in-law were in a better state, maybe Breuss could happen, but with him, weight loss is inevitable regardless of nutritional intake. Personally, I wonder how much he could even handle right now, especially when you factor in the pain. Besides, how would you manage Breuss while the father-in-law is in the hospital? Do you even have the circumstances to be home?
Honestly, both I and many others on this thread understand exactly what you and your wife are going through—that sheer mountain of frustration when everything is just speculation about what *might* be done, while in reality, nothing is known and you're constantly just waiting. But in these situations, there really is nothing else to do but live one day at a time and see how things unfold.

Rachel Williams said:Look, colon cancer is a sneaky bastard. There are almost zero symptoms in the early stages. For men over 50, prevention means getting a colonoscopy once a year, but honestly, very few people actually do it. I also see you're active in alternative medicine circles, and regarding that, since the search tool on this Forum is finally working, just look at the posts from the other users you talk to... if Breuss were in a better position, why not, but with him, weight loss is inevitable despite all the nutrients being given. Personally, I wonder how much he could even handle right now, especially when you factor in the pain. Besides, I don't know how you'd manage Breuss while your father-in-law is in the hospital—do you even have permission to be home?
I really feel for you, and many others on this thread know exactly what you and your husband are going through. There's so much frustration when everything is just speculation about what *could* be done, but nothing is certain and everyone is constantly waiting. In situations like this, there really isn't anything else to do but take it one day at a time and see how things unfold.

Thanks for the advice 🙂 I see the alternative crowd gets into some heated arguments; I'm not trying to follow anyone blindly, I'm just gathering information..

My husband's family consulted with the head nurse here in San Francisco who they know; she advised them to cancel the trip, thinking it was too risky to travel. So, they've called off the Avian trip. Basically, the situation is looking grim because it's very likely he'll need surgery for an ileus, as everything points toward his intestines potentially twisting. The surgeon has been by three times, but he keeps postponing the operation because he’s so weak. However, it's highly probable they will operate today or tomorrow. Right now he's on morphine patches, which seems to be helping with the pain, so his spirits are actually okay; he's talking nicely and understands everything.

The day before yesterday, a good friend's mother passed away. Cancer, too. It was uterine cancer; they found it somewhere in the first month, and she went through five cycles of chemo, which really helped her. She was doing so well that she couldn't even start the next cycle for a month because of the side effects. During that month, the tumor spread so rapidly that there was no saving her; she had some rare, galloping type of cancer. So we're looking at all of this now, wondering if the same thing is coming for us soon. It's a terrible feeling.

Linda Fox2 said:Prekjucer’s mom passed away. It was cancer, too. It started with her uterus, they caught it somewhere around month one, and she went through five cycles of chemo. It really took its toll on her—so much so that she couldn't even start her next cycle for a whole month because the side effects were just brutal. In that month of downtime, the tumor spread so aggressively it was impossible to save her; it was one of those rare, galloping types. Now we're all sitting here looking back at everything, wondering if we're staring down the same barrel very soon. It's a heavy, gut-wrenching feeling.

I am so incredibly sorry...
I can only begin to imagine what you all are going through. I don't have any family members fighting this, but I'm dealing with it myself (breast cancer with metastasis). Watching the people closest to me struggle every single time my own condition takes a turn for the worse makes me think that maybe the absolute worst thing isn't actually having cancer yourself—it's watching someone you love go through it.

Thanks to everyone for the support..

My brother-in-law is doing poorly. He was supposed to be discharged from the hospital to home hospice care these past few days, but his condition took a turn for the worse today. It looks like his large intestine might have perforated above the tumor, causing contents to leak into his abdomen. On top of that, his kidneys are failing—his urine is dark brown. His liver is also shutting down; his blood is extremely thin and won't clot. Because of this, they've called off the surgery to attempt to attach a colostomy bag to drain the waste. Alibse doesn't want to take the risk because it feels wrong to touch him when they know he likely won't survive the operation. So now, he’s just slowly fading away as one organ after another shuts down. They’re going to give him heavy sedatives so he isn't even conscious for it.

We spent today saying our goodbyes. All the little grandkids came by; I know he especially wanted to see them. He's still lucid and coherent—his mind is working and he can communicate—but his body is giving out. You can tell he knows the end is near. It's devastating how much weight he lost in less than a month. He hasn't even received an official diagnosis based on the pathology report yet, and he's already dying. It's heartbreaking. I just want him to pass peacefully before morning, so the suffering stops and he can move on to a better place.

Linda Fox2 said:Thank you all for the support..

My brother-in-law is doing poorly. He was supposed to be discharged from the hospital to home hospice care these past few days, but his condition took a turn for the worse today. It seems likely that his large intestine ruptured above the tumor, causing contents to spill into the abdomen. On top of that, his kidneys are failing—his urine is dark brown. His liver is also shutting down; his blood has become extremely thin and refuses to clot. Because of this, they’ve called off the surgery to attempt an ostomy bag to divert the waste. Alibse won't risk it because it feels immoral to touch him when they know he might simply die on the operating table. So now, one by one, the organs are just flickering out. They’ll give him heavy sedatives so he isn't even aware of it.

We said our goodbyes today; all the little grandkids came by, and I know he wanted to see them more than anything. He is still conscious, lucid, and communicative. His brain works. But the body is giving up. You can tell he knows the end is near. It’s devastating how much weight he lost in less than a month. He hasn't even received an official diagnosis based on the pathology report yet, and he is already dying. It's tragic. I only wish for him that he doesn't have to make it until morning—that the suffering stops and he moves on to a better place.

I am so sorry... I was praying too, asking God to shorten his pain, but it wasn't even close to being this bad. I just hope there is as little suffering as possible now that he has managed to say goodbye to everyone. Wishing you all so much strength.

Unfortunately, colon cancer is such a brutal fight, especially when you're dealing with one of those aggressive strains. Even if you manage to catch it early on—and I know this all too well because I lost my grandfather to it—it’s still an uphill battle. If your father-in-law is already aware of the situation, it implies the metastases haven't reached the brain yet, which means... Well, there's really no point in me going on about it, since at this stage, much can't be changed. My heart truly goes out to you.

@Linda Fox2/">@@Linda Fox2 My sincere condolences.
Cancer is just brutal. Honestly, once we finally kick the bucket, at least there isn't any more pain to deal with—that’s the one thought that actually brings me a bit of peace when I start thinking about death. I'm sure he's also finding some solace in the fact that you all got to see each other again and clear the air.

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My father-in-law passed away today; he's gone to a better place. They performed surgery on him early this morning—essentially just an open-and-close procedure. After being hooked up to machines for a few hours, he slipped away. At least the agony wasn't dragged out for more hours or days. This way, he at least went peacefully in his sleep.

We're grateful we had the chance to say our goodbyes. The doctors told us things were looking grim internally, with extensive metastasis. There was simply no chance, especially since nothing concrete was done until about a month ago. That's the only small comfort we have. They also mentioned it’s such a quiet, insidious disease that it must have been present for over a year, even if he only had mild symptoms or none at all.

Thank you everyone for the support over these last three weeks. To those who are still fighting, I wish you all the best.

I am so incredibly sorry... My father went through the exact same thing as your father-in-law; he ended up with a diagnosis after initially just dealing with back pain. He actually went to see his doctor specifically to get a referral for physical therapy, and then, just three months later, he was gone.
I still find myself lurking on this forum because, back then, having a place where I could "talk" about all of this meant the world to me. I truly hope this thread has provided you with even a little bit of comfort—if nothing else, just a way to vent and clear your head.

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