HCC (Liver Cancer)

My mother is battling this specific type of cancer—the kind doctors often label incurable. She is 57 years old. It was first detected via an MRI, and the tumor measures roughly 15 by 8 by 3 cm (about the size of a Sony Xperia). The specialists in Washington, D.C. (including Stipislav Jadrijević) essentially gave up on her. They sent her home without offering any viable treatment options.
However, there is a strange discrepancy that the doctors in Miami find extremely puzzling: she doesn’t physically look like someone with such a diagnosis. She hasn't withered away; in fact, she has actually gained about 7 pounds (going from 110 to 117 lbs). Her complexion is healthy and vibrant, which contradicts their initial assumptions that she would be jaundiced...
The situation is so confusing that after she spent three days at the Miami hospital, a medical board of 15 specialists (among them Eduard Vrdoljak) determined that all her tests need to be repeated. They believe there might still be a window for treatment through chemoembolization. But here is the catch: before Dr. Vrdoljak can initiate therapy, a new MRI is required. Getting that approved at the Miami facility will be an uphill battle, because they feel her case is already closed based on those first results, believing her death is imminent.
About 15 days have passed since the D.C. doctors discharged her and before this meeting with the Miami board. In the meantime, we have been turning to "alternative" medicine. She is strictly following a regimen of medicinal foods and specialized liquids we sourced from various websites. We are also using a liquid therapy specifically formulated for liver support, administered by a specialist who is incredibly confident in its efficacy, having helped many patients who were otherwise expected to pass away.
Factually speaking, her condition isn't deteriorating; if anything, she seems to be improving. Whether this is due to the liquid therapy or something else, I cannot say for certain, but she has been on it for three weeks now.

I started this thread to see if anyone here has experience with this specific illness, or knows someone who does. Please share your insights, particularly regarding treatment options. Thank you. 🙂

what needs to happen

is for the other doctors()

You could try asking for a private MRI at Sun, for instance, though I honestly can't wrap my head around why they wouldn't just redo the scan when the entire medical board has already agreed it’s necessary.

As for alternatives—specifically those "miracle" preparations people swear by—you are stepping onto incredibly dangerous, slippery ground. How can you be certain about the exact ingredients, how the dosage is managed, who is monitoring the patient's vitals, or who takes the fall if things go south? There is no way to guarantee there won't be a lethal contraindication with her current therapy. Don't forget that everything a person ingests has to be processed by the liver. In my mom's case, any extra strain on her system could be catastrophic and send everything spiraling downward. This forum is littered with stories of severe cases where patients were sent home, and instead of seeking out clinical trials or second opinions from major US hospitals or specialized clinics abroad, they turned to these "experts" who staked their reputation on unproven methods. Usually, those stories end in tragedy, often with people suffering in agony.
Be smart. Don't gamble with unverified methods that lack scientific backing.

We sought out additional perspectives beyond just Stipislav Jadrijević. We consulted two other top-tier specialists who reviewed the scans and stated there is absolutely no chance. There isn't a single doctor from the USA to Japan who would operate on her; doing so would essentially be a death sentence because they lack the means to bridge the gap between the liver and the circulatory system once the tumor is removed. In fact, we even sent the MRI disc to a specialist in Germany just yesterday.

What options are left when everyone else has written her off? They discharged her to come home to die without offering any treatment whatsoever. We realize we are grasping at straws here, but we simply have no other choice.

To provide more context regarding her situation: she spent her first 25 days in the neurology department at Miami. They ran every possible test imaginable, and the final MRI finally revealed the tumor—specifically, the blockage of those vessels around the liver. During those 25 agonizing days at Miami, she was hit with a million different diagnoses. They wouldn't even perform the MRI initially because the doctor thought she should be sent to a spa resort due to her limited mobility. It wasn't until we pressured them from every angle that he finally ordered the scan, which, unfortunately, confirmed our fears.

Stipislav Jadrijević and his colleagues reviewed the results, including the biopsy performed at Mercury, and the diagnosis matches what I have described. We also took copies of the findings to show several other doctors privately; the consensus remains largely the same.

Let me recount how that medical board meeting went.
My mother (accompanied by her fiancé) entered the consultation room. When they saw her, the doctors were visibly surprised; they were clearly expecting someone near death. They were so taken aback that one female doctor actually remarked that she must be wearing makeup because of how flushed she looked. My mother firmly denied that, and the doctor ended up apologizing.
Based on the clinical data, they concluded she should technically be dead, as the liver shouldn't be receiving enough blood or oxygen. Yet, evidently, the liver is still functioning.
Now, Dr. Eduard Vrdoljak has suggested that, based on her physical appearance, there might be a slim chance through chemoembolization. However, he insisted an MRI must be performed first—he literally said nothing happens without it—because he needs to determine the starting point for treatment.

Regarding the MRI, we are stuck in a circular loop where nobody seems to take responsibility. It feels like everyone is waiting for someone else to authorize the scan. Regardless, we are hoping it gets completed within the coming week.

I know exactly how you feel. I’ve been in your shoes, and honestly, choosing an alternative route was the single biggest mistake of my life. I regret letting my mother go down that path instead of just organizing the best palliative care available and reaching out to more specialists.
You should try sending inquiries over to the Dan Ferber Institute in Houston. I’ve heard second-hand from someone who had exhausted every possible option—verified by multiple experts—that they still offered five different alternatives, one of which was even a clinical study based in Germany.

Anyway, the first MRI was taken on October 18th, and the second one on November 25th. The results from the second scan are much more encouraging. The tumor has actually shrunk by some percentage! Her blood flow has increased as well. The oncologists at ST were quite pleasantly surprised. Dr. Eduard Vrdoljak told her he is extremely satisfied with both the results and her overall condition, noting that she is the ONLY case of this specific disease where the patient's status is actually trending upward. She was scheduled for chemoembolization today, but Dr. Eduard Vrdoljak advised that this method needs to be combined with SORAFENIB (Nexavar). The issue is that this medication isn't available here in the States; even though it was approved for treating HCC back in 2008, it isn't covered by Medicare.
Now, the doctor said he will personally advocate for her case—which he views as a significant challenge—and will petition Medicare for the drug. If they don't approve it, they will proceed with standard chemotherapy. They sent her home and told her to wait for a call from the Oncology department, though we don't know when that might be.

Ultimately, I am encouraged by this; it means there is genuine hope, even if certain bureaucratic structures act as obstacles to a person's recovery. Factually speaking, her mobility has improved. She can now walk 100 meters without assistance (previously, she could barely move around the kitchen), she can pick up laundry from her walker by herself, wash dishes, and handle small household chores like making bread. She still cannot shower independently, but any progress is better than none. To be clear, her life is still hanging in the balance, but...

Nexavar isn't on the Medicare formulary for my mom's specific diagnosis, but there's a loophole. Basically, if an oncologist prescribes a drug that's off-list and submits it to the hospital board for approval, the hospital budget picks up the tab. It’s a pretty messy workaround because hospital budgets are notoriously thin—especially for high-cost drugs—and thanks to some incredibly stupid regulations, you can't just go out and buy the medication yourself. You need a doctor's prescription first, then you have to try to claw the money back from the hospital to get treated there. Sometimes people manage to cut a deal with their doctor to operate in that gray area.
The third option is, in my opinion, the best move and it shouldn't cost you anything to try. You need to find out if the manufacturer's local US branch has any interest in donating the necessary doses. That's something you should run by Eduard Vrdoljak. Honestly, you could just crunch the numbers yourselves and start asking questions. It’s not uncommon for pharma companies to find these types of arrangements interesting as a way to pressure Medicare into expanding its approved indications on the official list.

Angela Wright said:Nexavar isn't on the Medicare formulary for my mom's specific diagnosis, but there's a loophole. Basically, if an oncologist prescribes a drug that's off-list and submits it to the hospital board for approval, the hospital budget picks up the tab. It’s a pretty messy workaround because hospital budgets are notoriously thin—especially for high-cost drugs—and thanks to some incredibly stupid regulations, you can't just go out and buy the medication yourself. You need a doctor's prescription first, then you have to try to claw the money back from the hospital to get treated there. Sometimes people manage to cut a deal with their doctor to operate in that gray area.
The third option is, in my opinion, the best move and it shouldn't cost you anything to try. You need to find out if the manufacturer's local US branch has any interest in donating the necessary doses. That's something you should run by Eduard Vrdoljak. Honestly, you could just crunch the numbers yourselves and start asking questions. It’s not uncommon for pharma companies to find these types of arrangements interesting as a way to pressure Medicare into expanding its approved indications on the official list.

I understand. Reaching out to the manufacturer would certainly be a prudent move, as they have a vested interest since it isn't officially registered as a standard medication yet.

As for her condition, even the doctors seem somewhat perplexed, which is the crux of the matter. It is highly unusual for a disease of this nature to fail to progress. He mentioned personally that he intends to petition Medicare for the drug and will do everything in his power to secure it. I have no desire to hold a negative view of the physician, but I suspect he will pursue this for professional development. If one looks him up online, he is ranked among the top 50 oncologists globally, and this is likely a case where he can significantly deepen his expertise. Perhaps this could result in a success story that helps establish treatment protocols for everyone suffering from this illness in America and beyond.

It’s honestly such a relief that you found such an experienced, top-tier doctor who genuinely wants to help. I mean, how old is the patient, if you don't mind me asking?

Sent from my iPhone 13 using Reddit

She’s barely 57 years old, and honestly, she hasn't even stepped foot in a doctor's office until now.

Bryan Foster4 said:I understand. Reaching out to the manufacturer would certainly be a prudent move, as they have a vested interest since it isn't officially registered as a standard medication yet.

As for her condition, even the doctors seem somewhat perplexed, which is the crux of the matter. It is highly unusual for a disease of this nature to fail to progress. He mentioned personally that he intends to petition Medicare for the drug and will do everything in his power to secure it. I have no desire to hold a negative view of the physician, but I suspect he will pursue this for professional development. If one looks him up online, he is ranked among the top 50 oncologists globally, and this is likely a case where he can significantly deepen his expertise. Perhaps this could result in a success story that helps establish treatment protocols for everyone suffering from this illness in America and beyond.

The drug is registered for the indication, it's just not currently on the Medicare coverage list for that specific use. Honestly, I don't see why, because Nexavar is primarily for hepatocellular liver cancer, and it's already on the Medicare list for kidney cancer. Anything that's registered is technically available for treatment. You can even use it "off-label" if there are published studies proving it works. Regarding drug registration, it's really not the hurdle it used to be in America; once we aligned with the European Union standards, we essentially gained access to everything registered within the EU, unless our own FDA explicitly bans it.

That said, I’d strongly advise getting a second opinion on her tissue biopsy somewhere abroad. Given how atypically this tumor is behaving, there’s a real possibility the initial diagnosis was off. Since she’s facing oncology treatment, this is absolutely critical. Submit a formal request to pick up the tissue samples from the pathology lab at Mercury on a release form for the purpose of repeating the biopsy (seeking a second opinion), then choose a different clinic to run it through. It could be a major hospital like Mayo Clinic or Johns Hopkins, but my honest recommendation is to go to one of the massive specialized clinics overseas just for the sheer volume of experience they have. Where there's more patient turnover, there's a much higher chance they've seen a case exactly like this before.

I honestly don't think she would agree to undergo further testing here, let alone travel abroad—we simply aren't in a financial position to make that happen. There is also a genuine fear regarding potential chemoembolization (KE) down the road. She mentioned that if the procedure leaves her feeling poorly, she won't go through with it. Whether there was an error in the initial diagnosis is something I can't say, but frankly, I don't think it matters much right now; we have to deal with the reality of her current condition. To put it another way, Eduard Vrdoljak obtained updated data on her status during the second MRI, and they will use that information to attempt a course of treatment. She feels convinced that her current alternative therapy is working, and at this stage, that peace of mind is what matters most. Having spent a month in the hospital has taken a massive toll on her, both mentally and physically. I appreciate all your suggestions. I’ve sent an inquiry over to Bayer, though I highly doubt they will respond, much less provide any assistance. 🙂

I think you guys missed my point entirely. The PhD testing is performed using tissue samples that have already been harvested from Mercury. Mom doesn't need to go anywhere for this. A PhD test is actually the most critical diagnostic step because it identifies the exact type of tumor, and that specific detail dictates the entire treatment plan. You have to be 100% certain about the diagnosis, because if you apply the wrong therapy, it’s fatal.
Repeating the PhD test isn't an expensive undertaking when you consider the payoff.
To give you an idea of how much is at stake, let me tell you about a situation involving the husband of a woman who reached out to me. Her husband collapsed in the bathroom and ended up in the hospital. They ran an MRI, told her it was a tumor, and the PhD puncture indicated suspected glioblastoma. He went through 30 rounds of radiation while waiting to start chemo with Temodal. The wife was restless and decided to send the samples along with all the other medical records over to the USA for a second opinion. At two in the morning, they called her frantically, telling her she had to pull her husband off radiation immediately; apparently, he didn't even have a tumor—it was a stroke. Now the man is dealing with serious illness on top of having undergone unnecessary radiation; I honestly don't know how he's still standing. I'm telling you, people make mistakes, and sometimes things look like one thing, even though those with more experience will tell you it's something else entirely.
For anyone dealing with these kinds of unusual or atypical conditions following a malignant diagnosis, I always recommend re-running the PhD using the existing tissue samples.
Wishing you all the best, and I hope Mom gets through this.

On the Bates clinic website, it says:

Uterobrush plus endometrial aspiration plus PhD equals $950
Endometrial aspiration plus PhD is $850
Biopsy, polyp ablation plus PhD equals $850

Is that the full breakdown?

To be honest, these terms are all brand new to me. I initially assumed she would need to undergo a biopsy again, but seeing as you clearly understand the nuances of these procedures, I feel much better. Thank you for the well wishes and the advice. 🙂

Bryan Foster4 said:On the Bates clinic website, it says:

Uterobrush plus endometrial aspiration plus PhD equals $950
Endometrial aspiration plus PhD is $850
Biopsy, polyp ablation plus PhD equals $850

Is that the full breakdown?

To be honest, these terms are all brand new to me. I initially assumed she would need to undergo a biopsy again, but seeing as you clearly understand the nuances of these procedures, I feel much better. Thank you for the well wishes and the advice. 🙂

That process involves taking a tissue sample and sending it off to a hospital pathology lab for the PhD analysis. Essentially, the price covers both the collection of the sample and the fee they pay the hospital to process the PhD. Based on what you found, these are all gynecological procedures.
In some cases, getting a repeat PhD might even be free if her doctor writes a referral for a second opinion, especially if she's having the re-analysis done at a facility like Rib or Firule.
Performing a repeat PhD or histopathological analysis works by taking the existing slides from Mercury—just like I described—and having a different pathologist examine them under a microscope. They use specific staining techniques to pinpoint exactly which cells they are looking at, determining if they are malignant and, if so, precisely what type. Not all malignant cells are built the same. In fact, this specific data is the most critical factor in cancer treatment because everything hinges on it. An oncologist relies entirely on that report to decide which treatment protocol to follow and which medication to prescribe.

Hey everyone. I'm 23. Last year, right after my 22nd birthday, I ended up in the hospital because of some intense abdominal pain (or so I thought at the time). After running all the tests, it turned out I had HCC. A silver lining, I guess? It was only caught because the tumor was pressing against my central vein, causing a blood clot and those pains—even though this disease is usually a silent killer. Another stroke of luck: despite the tumor taking up about 60% of my liver, I was still considered operable. The surgery was a massive gamble with my life, but apparently, staying active and keeping a positive mindset actually pays off. They had to remove 70% of my liver, and recovery was a long, grueling process. Unfortunately, it came back this year in my lungs and liver, but honestly, it’s nothing compared to the first round—we're talking small spots, maybe a few centimeters max. We fought hard, and we managed to get me approved for treatment with Sorafenib (Nexavar). My internist says the drug is working well, but I need to be patient. I've heard there are similar drugs on the market, and once the patents expire, they should become much more affordable (right now a box of Nexavar is like $1,100, but once the patent drops, it could be $100-$67), but I'm not entirely sure how or where to find them. Feel free to reach out if you have questions or if there's any way I can help. Cheers.

slyranger16 said:Hey everyone. I'm 23. Last year, right after my 22nd birthday, I ended up in the hospital because of some intense abdominal pain (or so I thought at the time). After running all the tests, it turned out I had HCC. A silver lining, I guess? It was only caught because the tumor was pressing against my central vein, causing a blood clot and those pains—even though this disease is usually a silent killer. Another stroke of luck: despite the tumor taking up about 60% of my liver, I was still considered operable. The surgery was a massive gamble with my life, but apparently, staying active and keeping a positive mindset actually pays off. They had to remove 70% of my liver, and recovery was a long, grueling process. Unfortunately, it came back this year in my lungs and liver, but honestly, it’s nothing compared to the first round—we're talking small spots, maybe a few centimeters max. We fought hard, and we managed to get me approved for treatment with Sorafenib (Nexavar). My internist says the drug is working well, but I need to be patient. I've heard there are similar drugs on the market, and once the patents expire, they should become much more affordable (right now a box of Nexavar is like $1,100, but once the patent drops, it could be $100-$67), but I'm not entirely sure how or where to find them. Feel free to reach out if you have questions or if there's any way I can help. Cheers.

That is incredible... major respect to you. 👍 It really is a silent killer. How is your physical condition currently, specifically regarding mobility? And regarding this recent recurrence, is it directly linked to the HCC? Wishing you all the best!

Regarding my mother, the oncology department called the house to check in on her status. They mentioned that she should ideally have this medication shipped directly to our doorstep from the USA, and the doctor is currently doing everything possible to facilitate that process. As for her mental and physical state, things are holding steady. She isn't able to climb stairs, that's a certainty, but there is some progress; whereas she could previously only manage about 15 feet (initially, she could barely move away from the table), she can now walk about 65 feet on her own—though she's still significantly slower than Usain Bolt 😉

That would be incredible because the medication actually works. It’s honestly pathetic that our government hasn't added it to the coverage list yet, forcing people to struggle through all those health issues without support. What we're dealing with here is hepatocellular carcinoma that has recurred—secondary. When I first started Nexavar, the side effects were brutal. I had a rash on my arms and legs so bad I could barely move, the fatigue was constant (though now it only hits when the weather changes), and my hair and eyebrows actually thinned out. Even then, I tried to push myself through workouts and swimming as much as my body would let me—maybe I overdid it a little. Nowadays, as the body adjusts to the drug, things are finally leveling out. The side effects are fading, and I’m back in the gym, swimming, and running regularly (though my hands and feet stay a bit sensitive). There isn't much else to say besides being patient and hoping for the best. I am genuinely happy to hear this; I really hope your mom gets access to these meds and starts her treatment soon. Good luck! 😉

Bryan Foster4 said:My mother is battling this specific type of cancer—the kind doctors often label incurable. She is 57 years old. It was first detected via an MRI, and the tumor measures roughly 15 by 8 by 3 cm (about the size of a Sony Xperia). The specialists in Washington, D.C. (including Stipislav Jadrijević) essentially gave up on her. They sent her home without offering any viable treatment options.
However, there is a strange discrepancy that the doctors in Miami find extremely puzzling: she doesn’t physically look like someone with such a diagnosis. She hasn't withered away; in fact, she has actually gained about 7 pounds (going from 110 to 117 lbs). Her complexion is healthy and vibrant, which contradicts their initial assumptions that she would be jaundiced...
The situation is so confusing that after she spent three days at the Miami hospital, a medical board of 15 specialists (among them Eduard Vrdoljak) determined that all her tests need to be repeated. They believe there might still be a window for treatment through chemoembolization. But here is the catch: before Dr. Vrdoljak can initiate therapy, a new MRI is required. Getting that approved at the Miami facility will be an uphill battle, because they feel her case is already closed based on those first results, believing her death is imminent.
About 15 days have passed since the D.C. doctors discharged her and before this meeting with the Miami board. In the meantime, we have been turning to "alternative" medicine. She is strictly following a regimen of medicinal foods and specialized liquids we sourced from various websites. We are also using a liquid therapy specifically formulated for liver support, administered by a specialist who is incredibly confident in its efficacy, having helped many patients who were otherwise expected to pass away.
Factually speaking, her condition isn't deteriorating; if anything, she seems to be improving. Whether this is due to the liquid therapy or something else, I cannot say for certain, but she has been on it for three weeks now.

I started this thread to see if anyone here has experience with this specific illness, or knows someone who does. Please share your insights, particularly regarding treatment options. Thank you. 🙂

what needs to happen

is for the other doctors()

That is definitely highly unusual.
Any updates on moving things forward?
By the way, if you feel comfortable, please post the lab results (PET, MRI, AFP, etc.) because I am genuinely fascinated by this case.

Thank you for the interest... please help if you can 🙂

She is doing as well as can be expected. Regarding her mobility, since she returned home, she is certainly about 60-70% more mobile today than she was back then. She has gained more independence—things like walking, dressing herself, and changing clothes.
It will have been four months since she was admitted to the Mayo Clinic. Even today, she is still waiting for that medication that is supposedly being delivered directly to our doorstep.
After the New Year, though we don't know the exact date, she will undergo new examinations in Washington, D.C. (and honestly, with all the faith in my heart, I hope that is when we finally receive official confirmation that her condition is improving). For this past week, her stomach has been bothering her, though we aren't sure why. She feels some pain, though it was less intense today than it was yesterday. Her face looks good; there is no jaundice at all—in fact, she actually looks flushed.

We are fully aware of the reality here; tomorrow she could pass away without warning. However, in my humble opinion, this is definitely a case that deserves attention, and I hope it remains so. 🙂

Tomorrow I will post her medical results so you can review them. Thank you once again. 🙂