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My heart goes out to you all. Please accept my deepest sympathies.
We received the PhD pathology report today (from Prof. Dr. Sven Viggers):
The histology shows irregular connective tissue fragments interwoven with a tumor composed of small atypical cells featuring hyperchromatic nuclei and scant cytoplasm, mostly arranged in irregular clusters. Some of the tumor cells show necrotic changes. The tumor cells are predominantly round to oval with irregularly distributed chromatin and no prominent nucleoli. Immunohistochemical staining of the tumor tissue was strongly POSITIVE for CD-99, but negative for NSE, S-100, EMA, and cytokeratin.
The findings primarily point toward Ewing sarcoma.
RT-PCR genotyping for EWS/FLI-1 came back NEGATIVE, though that doesn't rule out the diagnosis above.
I honestly can't believe this isn't definitively settled yet—it's still just a "subtype."
I was searching online and saw that the histogenesis of Ewing sarcoma hasn't been fully determined, so I guess it really isn't a straightforward thing to pin down.
Our orthopedic tumor specialist (Dr. R. Kolundžić) referred us to Dr. Šantek over at Mayo Clinic for chemotherapy.
Now we need to get a pelvic CT scan and a bone scintigraphy with CT.
Once the oncologists have finished their assessment, we’ll have to head back to the orthopedic surgeon to discuss pelvic reconstruction (removing the affected bone).
For the imaging, they recommended we go through Mount Sinai, so does anyone happen to know what the typical wait time is there?
We could always opt for a private CT scan, but I'm not sure if there are any private clinics that offer bone scintigraphy.
Thank you!
I remember reading in some previous threads that you all were out at Central Park in mid-July signing that petition, and slyseal28 mentioned that you could actually request the petition form via email. If that’s still an option, please, could you send it over to
anita.kukuruzovic@gmail.com or
anita_pz@gmail.com?
Even though I'm just one person dealing with a tiny bit of DA, I am fully committed to going door-to-door, town to town, and apartment to apartment. I can't sit idly by after hearing that disgraceful comment from that monster at Medicare about how certain patients just have to die. Of course, he certainly wasn't talking about his own family or those "cowards" sitting in Congress.
Forgive my language, but I am absolutely livid. I'm still relatively new to all of this, and it's honestly terrifying to realize I'm only just now discovering the horrifying information that some of you have been forced to carry for years.
It is honestly heartbreaking to see what’s happening with their annual leave policies! It feels like everything just grinds to a halt, doesn't it? I wish it were at least that simple when you're dealing with an illness. To all the fighters out there, you are absolutely right. Who can we even direct our anger toward when they've spent so much time dragging us along like this?
But here we are—we finally dropped off the tissue sample at Salat last Wednesday, gave them a little nudge over the phone, and the results are actually ready today. We’re heading in to pick them up tomorrow, and then we have our 1:00 PM appointment with the doctor at Salat.
We have waited for such a long time, and now that the moment is here, we are gripped by this massive, overwhelming fear of whatever the diagnosis might be.
There’s no other way forward; we finally have to face this head-on and start the fight.
I really want to say a huge thank you to slyseal28 for the advice. The last time we took the tissue sample over to the pathology lab, we were seeing a specialist at Salat. Naturally, they couldn't give us any real answers until the results were officially confirmed. I think I read somewhere else that seeking multiple opinions is actually what you should be doing. I'm seriously considering reaching out to the experts at Rib since you mentioned they have two specialists who focus specifically on sarcomas. My biggest worry is how to go about that—how do I ask for a second opinion without making someone feel insulted or having them dismiss me just because I want more certainty?!
By the way, looking back at the pathology report from the DA which wasn't 100% definitive, the tumor markers came back negative, but the vimentin was positive. Does anyone know what that actually means? I am completely lost! Is vimentin some kind of protein within the cytoskeleton? Also, the report noted that the tumor tissue is infiltrating the striated muscles. Is that a particularly bad sign? There was also quite a bit of necrotic tissue present, though there were no signs of mitosis.
The waiting is absolutely driving me crazy. We haven't had a clear diagnosis since July 11th, yet we know for a fact that something is happening!
Thanks so much, everyone!
I honestly can't believe I'm just now diving into this! I’ve started scrolling through everything from the very first page, and while it might take me a few days to catch up on all the wisdom here, I simply refuse to let a single piece of advice slip past me.
It is absolutely heartbreaking how some doctors can be so callous, just dropping heavy, "dark" news in your face without any filter, only for it to turn out to be completely inaccurate anyway. Is it really that difficult to look someone in the eye and remind them that there is always hope, and that hope is the last thing to die? And don't even get me started on the endless waiting periods! We are dealing with illnesses where every second counts—where you need those pathology reports and scans immediately—yet they seem to have all the time in the world to sit on them.
The specialists at the DA were actually unable to properly interpret two different CT scans, an MRI, and several intense X-rays of his spine and pelvis. They kept insisting the issue was inflammation in the retroperitoneum.
My dad had his surgery on July 11th, and he spent 25 agonizing days waiting for the pathology results, only for them to arrive incomplete and requiring further testing. This past Wednesday, July 13th, we ended up driving the tissue samples over to Salat ourselves just to move things along. Now, we are just sitting here, waiting for the final word.
Since the surgery, they haven't provided us with any formal findings—not blood work, not urine tests, nothing from the CT, MRI, or bone scintigraphy—so I am turning to you all for guidance. Should we go out of our way to pay for private testing just to get some clarity?
It is absolutely killing me that we still don't know the exact location of the tumor—whether it's actually part of the pelvic bone or involving the sacrum as our experts suspect—and we are still in the dark about whether there are metastases, what the treatment plan should be, or even where to seek it.
I am especially reaching out to Jane Doe for advice, and I'd also love to hear from slyseal28 regarding sarcoma, if you don't mind me addressing you by your handle, given your experience with that specific diagnosis.
The mere thought of the upcoming wait for radiation or chemotherapy is just terrifying.
THANK YOU SO MUCH!
Angela Wright, THANK YOU SO MUCH for getting back to me. It honestly means the world to receive advice during these heavy, initial moments while we’re still trying to find our footing and make sense of everything. It’s especially comforting to hear from people who have actually walked this path and gathered so much wisdom along the way.
I’ve been reading up on how many people swear by Noni juice for boosting the immune system, and I even saw some info about it at the local pharmacy, but I’m really hesitant about mixing supplements until I can confirm it’s actually safe.
As I mentioned earlier, my dad has been sticking to herbal teas and juices following the Breuss method alongside a very healthy diet—he’s completely overhauled the way he eats compared to how he used to. Because of that, I’m wondering if Noni juice would be a good addition, or if it might clash with his current regimen? I do know it’s generally okay to take with antibiotics, and even before or during surgery and chemotherapy.
Thank you all so much! Hang in there, everyone. When I first heard the diagnosis, I just broke down and cried, but I quickly realized that if I did that, I was basically telling my dad "we aren't going to win this." I had to snap out of it and realize that we need to face this illness head-on.
My husband has been diagnosed with Ewing's sarcoma, specifically located in the pelvic bone and part of the sacrum. We are currently waiting on the final confirmation from the specialists at Salat so he can officially start his treatment plan. He’s already transitioned to a very healthy diet, so I was wondering if incorporating certain herbal teas—like the ones Mrs. Lepina used to swear by, such as sage tea, kidney support tea, bone strengthening tea, and various vegetable juices—might be beneficial, especially since he isn't on a strictly restrictive regimen right now? He recently had to deal with a nasty infection in his retroperitoneum that was putting pressure on the iliac arteries and veins in his right leg, which causes some swelling in his leg from time to time. I really thought that maybe some of these natural remedies could help bolster his immune system and dial down the inflammation a bit.
Note: we aren't turning our backs on conventional medicine, but we definitely believe in using alternative support like teas and juices alongside it.
Thank you!
I completely agree that the individual fighting the illness has to be the one to decide how they want to tackle it and cope with everything, all while having the unconditional support of their family behind them.
My dad believes in the Breussov therapy—though, of course, he isn’t putting 100% of his faith in it, just as he isn't putting all his eggs in one basket with radiation or chemo.
We definitely aren't turning our backs on conventional medicine, even though the doctors have been an absolute disappointment to us. Back when we were in Pittsburgh, they kept us spinning our wheels for two months, tossing around diagnoses ranging from sciatica requiring nerve blocks to an inflammatory process in the retroperitoneal area that eventually required surgery. It wasn't until we finally got the discharge papers that we realized they actually suspected a tumor. We waited twenty-five days for the pathology report, only to receive a note saying: "Histologically, this most likely appears to be Ewing's or Askin's sarcoma, but further tissue analysis is required for a definitive diagnosis." Of course, the surgeons didn't think to coordinate with the pathologist to send the tissue to NYC for analysis, even though the surgeon who operated on my dad explicitly told us we were waiting on results from NYC. It was only much later that we noticed a stamp from the local county office and found out through a contact that the tissue hadn't even reached a pathologist in NYC. Eventually, we took the tissue samples to Schultz ourselves and met with an orthopedic oncologist, who told us straight up that we couldn't start any treatment until we had the specific "first and last name" of the sarcoma.
We aren't forcing any specific therapy on him; instead, we're just focusing heavily on healthy nutrition, especially since his diet used to consist mostly of heavy, greasy comfort food. I personally feel that herbal teas can be wonderful for helping the body recover before intensive treatment begins, or at least for easing some of the symptoms. Naturally, once the formal treatment kicks off, we wouldn't dream of doing anything on our own without consulting his doctor first.
I've read so many of your posts and I truly value your advice because you clearly have so much experience. Because of that, I'd love it if you could take a look at the thread titled "Experiences with Ewing's Sarcoma" and leave us a comment.
Thank you!
Thank God I finally stumbled upon someone who actually believes in Brevsov's total cancer therapy. My dad was recently diagnosed with Ewing's sarcoma, which is typically seen in children, so we've been feeling pretty lost. While I was digging around for more information—mostly because the specialists we saw in Pittsburgh didn't seem to have any real answers—I came across lepina.blog. It’s run by Mr. Tvrtko Barnjak, who is basically the driving force behind the site, and he goes into incredible detail about how he successfully recovered using this specific therapy after undergoing surgery for both small and large intestine issues along with radiation. There are quite a few people posting there who claim they’ve had similar successes too.
What's more, they actually provide documentation to back up those claims.
In my family, I'm the only one who is 100% on board with this, so Dad is following the therapy while sticking to a very clean, light diet. He honestly mentioned that all those juices and teas just kill his appetite entirely. I remember reading a story in R. Breuss's book about a woman who followed the strict protocol for only two weeks and then went back to a regular diet for the remaining four weeks, yet she still managed to beat the "beast."
If I were facing this kind of situation myself, I think I would try the strict Brevsov regimen first. After all, who can really guarantee that chemo and radiation will work? Not to mention the brutal side effects they have on healthy cells, not just the tumor cells, and nobody can promise you won't face a recurrence anyway.
The Brevsov therapy claims there are no recurrences. The book even mentions that many of these individuals are still alive and well today.
I’m reaching out to you on behalf of my 53-year-old parent, who is currently battling Ewing sarcoma. We are living in a small town outside of Indianapolis, and right now, we are still in that incredibly difficult, uncertain stage where the diagnosis hasn't been 100% confirmed yet.
I know this text is incredibly dense and detailed, but please, I beg you not to let that discourage you from reading through it. We truly, deeply believe in you and in the potential of Breuss's total cancer therapy.
My dad was admitted to the abdominal surgery ward back on July 10, 2008, after an abdominal CT scan picked up a mass—basically a localized swelling or thickening—in the right retroperitoneal area.
About three months ago, he started dealing with all those classic symptoms of lumbosacral syndrome, so he’s actually been working closely with his neurologist to get everything under control.
I’ve tried everything from various analgesics to nerve blocks, but honestly, nothing seems to be making a dent.
Before he was admitted, his right lower leg started swelling up quite a bit because the pressure from the tumor was pushing against his iliac artery.
I’ve been looking over my recent scans, and it looks like there is some nerve plexus involvement on the right side of my pelvis. It’s one of those things where you read the report and just have to sit there for a second, trying to wrap your head around what it actually means for the next steps in treatment.
He was just diagnosed with an abscess.
I was just sitting here thinking about everything that’s been going on lately, and I can't help but feel a bit overwhelmed by the sheer weight of this diagnosis. Dealing with a primary retroperitoneal sarcoma is one thing, but having it all hit at once really makes you stop and reflect on how quickly life can shift. It’s a heavy realization to process, and honestly, there are moments where I just have to sit with the gravity of it all before I can even begin to figure out the next steps.
On July 11th, they performed the surgical procedure to remove the tumor.
The doctors managed to drain a moderate amount of purulent fluid from the site, and they’ve also moved forward with performing a tissue biopsy to get a clearer picture of what we're dealing with.
The abscess was actually quite massive—it measured about 170mm in length and roughly 70x95mm in width. It stretched all the way down alongside the psoas muscle right to the pelvis, where it was pressing directly against the iliac arteries and veins, as well as the sacrum and the coccyx.
The abscess had actually started spreading toward my lower back, moving right along the muscles next to the spine, and it measured about 48x55x72mm.
The scans actually picked up some signs of osteolytic changes in the cranial portion of the sacroiliac joint, right around the level of the S1 vertebra; most of that activity seems to be concentrated within the sacral body itself, though there’s also a smaller amount showing up in the S1 transverse process.
We didn't actually find out any of this until we received the discharge papers. Right after the surgery was over, the doctor told us that they had successfully cleared out the infection, so things are finally starting to look up.
Back on November 14, 2006, he had to undergo surgery because his appendix actually ruptured, and looking back now, we truly felt like the issue wasn't fully resolved or properly handled at the time.
The entire contents of the intestinal tract were essentially what triggered that severe, purulent inflammation we're seeing. It’s honestly quite overwhelming when you think about it, but throughout all our discussions, absolutely nobody had even breathed a word about a potential tumor.
On July 24th, he was finally discharged from the hospital, and he spent those following days just waiting on the pathology results, which he eventually received at...
Monday, August 4th—it’s officially been 25 days since the surgery.
The primary physician mentioned that the biopsy results were being processed over in Indianapolis, but honestly, it sounds like the pathologists were left completely in the dark about what they were actually looking at.
It’s working, so they actually sent him over to Washington, D.C.
So, the thing is, that little tissue sample hasn't actually left the local hospital in Indianapolis yet.
The pathology report describes pieces of tumor tissue that histologically consist of monotonous...
The pathology report shows these solid masses composed of tiny cells characterized by chromatin that looks somewhat rounded, granular, and partially serrated. There’s so little cytoplasm present that the nuclei actually end up pressing against one another and deforming their shapes. I didn't see any evidence of mitosis, though there are extensive areas of necrosis throughout. Most concerningly, the tumor tissue is actively infiltrating the skeletal muscle.
The immunohistochemistry results just came back, and honestly, it’s a bit of a mixed bag to process. They ran tests for CK, CD45, CD20cy, and S-100, but everything turned out negative. It feels like we're standing in a bit of a waiting game now, looking at a blank slate where we expected some markers to light up.
The pathology results just came back, and they show that the Vimentin test is positive. Looking at the histology, everything points most likely toward either Ewing's or Askin's sarcoma.
It’s definitely a sarcoma, though we're still waiting on those final immunohistochemistry results—specifically the CD99 markers—to officially confirm the diagnosis.
We might need to look into getting some cytogenetic processing done on the tumor tissue.
Back on Wednesday, August 6th, the surgeon stepping in for the head physician sat us down to explain what was going on, noting that they were dealing with a bone tumor in the bowel area that is specifically characteristic of childhood cases. He actually mentioned that in all his 23 years of medical practice, he had never encountered this particular type of sarcoma before, which definitely added a layer of weight to the conversation for our family. We’re currently waiting for Saturday, August 9th, when an oncologist is traveling in from Indianapolis to meet with us; we're hoping they can provide some much-needed clarity and more specific details about the next steps.
We headed over to the Mayo Clinic, really holding onto that sliver of hope that we could finally secure a bed and figure out our next steps. Once we were there, an internist told us straight up that the diagnosis wasn't actually complete yet, insisting we needed more tissue biopsies done at a local specialty center. Then, almost in passing—like they were just checking off a box—they suggested we should just head home and prepare for the end, claiming it wasn't even worth attempting surgery or radiation. It was honestly devastating to hear, especially because the oncologist we met with this past Saturday completely debunked those claims, setting the record straight on everything they had told us.
Last Friday, August 8th, we headed over to our primary care physician to get the necessary referrals sorted out for some immunohistochemistry testing and a few other diagnostic procedures.
She actually reached out to the pathology department over in Indianapolis to get some clarity on the situation, and they let her know that the tissue sample wasn't really up to par for a proper analysis because it had started to degrade. It’s one of those frustrating setbacks where you feel like you're just spinning your wheels, but apparently, the pathologist is away on vacation right now. We should be able to get the glass slides containing the tissue back in our hands by Monday, which will then allow us to ship everything off to the specialists at the Mayo Clinic, though we still need to figure out who is going to handle the logistics for that.
I can't help but wonder if we'll ever actually get some real answers or if we're just going to be left hanging indefinitely. It feels like we're all just sitting here, staring at the ceiling, waiting for some kind of breakthrough or a clear update that might finally tell us what's really going on.
Last Saturday, August 9th, our oncologist sat us down to explain the next steps, and it sounds like we’re at a bit of a crossroads regarding the procedure. They mentioned that once the surgeon consults with the pathologist, they'll make a final call on how to proceed—either by sending the tissue sample off for analysis or by having the oncologist refer Dad to an orthopedic specialist at the Mayo Clinic to perform a direct bone biopsy. It's a lot to process, but we're just trying to stay ahead of everything and make sure he gets the most precise diagnosis possible.
Tomorrow we’re heading in to plead with our primary care physician for a referral, because we have an appointment scheduled at Mount Sinai this coming Tuesday, August 12th.
The thing is, after two months of treatment, we still don't have a definitive diagnosis, and the doctor didn't even bother requesting a bone scan while we were waiting for the tissue biopsy results.
In a moment of total desperation, while I was frantically scouring the internet for everything related to cancer, treatments, and holistic healers, I stumbled upon—thank God—your blog, and I’ve been reading everything from November 2006 through June 2008.
I honestly couldn't believe my eyes! It all seems so straightforward (though, of course, it isn't for the patients going through it over those 42 days), and seeing how many people have endured this and actually succeeded gives me such hope. I felt like calling my family right at midnight just to scream with joy because we finally found a glimmer of hope. The very next day—on Saturday, when we went to see the oncologist—I bought Mr. Breuss's book. We’ve studied everything, bought a juicer, and gathered all the teas.
Dad started drinking vegetable juice today along with some light meals to prepare his system. He says the beet makes it taste a bit like dirt to him.
I am reaching out because I really need your advice: back in May and June, he suffered through excruciating pain in his spine and his entire right leg due to a massive infection, and things were made worse because they misdiagnosed him with sciatica and gave him the wrong nerve blocks. During his hospital stay, he lost about 22 pounds (he’s down to about 143 lbs now), and I’m genuinely terrified that he might not be strong enough to handle a strict regimen, even if it’s the best path forward, because of the lack of protein intake and the way the body breaks down proteins within the tumor and the swelling itself.
It looks like surgery, radiation, or chemotherapy might be necessary, and I understand that Breuss's therapy isn't recommended during those times.
Our plan was to stick to grain soups, skinless chicken broth, boiled chicken, fish, whole grain bread, soy, black rice, grapes, and other light, healthy foods, while incorporating sage tea, kidney tea, knotgrass tea, and bone cancer tea, along with vegetable juice and red onion soup. What would you suggest? We haven't been able to find the *Meum mutellina* herb needed for the bone cancer tea at any local pharmacy.
Also, should we be doing biochemical blood and urine tests, a complete blood count, liver enzymes, or thyroid hormone panels before and after the therapy starts?
For the most part, his blood work looked okay, except for elevated lymphocytes (which I assume is from the inflammation; his C-reactive protein was 108 mg/L, whereas it should be around 5), though his tumor markers were within the normal range.
Regarding enemas, can he drink lukewarm chamomile tea or take half to two tablespoons of castor oil? And should he be drinking plenty of water?
I read that dry brushing is beneficial, as well as a millet course (cooked with finely minced vegetables) for various types of bone pain (he’s currently using a cane because his right leg was so swollen). Now that the swelling has gone down, the pain only comes and goes. Would it be helpful to massage his leg with St. John's Wort oil?
We are waiting with bated breath for your response and guidance, and we thank you from the bottom of our hearts.
Please forgive the length of this message; I just wanted to make sure I explained everything clearly since we've been trying to piece it all together from books and the web.
THANK YOU SO MUCH!