3 posts shown.
Angela Wright said:A mesenchymal tumor is actually a sarcoma. Unfortunately, sarcomas are quite rare and are most often highly malignant—there are dozens of different types and varying degrees of malignancy depending on where they grow and what stage they are at. Generally speaking, with sarcomas, there often isn't an adequate chemotherapy available, so surgical removal remains the best possible option.
As for Oncologist Herceg—he and Dr. Šantek are basically the top experts for rare tumors, specifically sarcomas, within the US medical landscape. He’s not a bad doctor, per se; he just has this certain wall up—a bit of perceived arrogance—but if you can get past that, he's quite direct.
The Nolvadex did exactly what it was supposed to do—slow down the growth of the tumor. Sadly, that's usually when a relapse occurs.
My advice would be to absolutely seek a second opinion abroad at one of the major centers of excellence for sarcomas. America is a large country, but even here, specialized clinical trials for these specific types of tumors are hard to come by because they are so rare—the patient pool is tiny, which means the available research is limited too. Unfortunately, whatever might be needed for further treatment likely won't be covered by Medicare, meaning you'd have to fund it yourselves—and we're talking about very expensive medications. Between the bureaucratic red tape and trying to self-fund, it can be a real struggle. So, please—go abroad if you can manage it. My suggestion would be Dr. Paolo Casali at the "National Cancer Institute" in Milan. Just Google them; you'll find their site and contact info easily.
Thank you so much, lovely,
I was thinking something similar regarding going abroad—I actually have a cousin in Switzerland who worked as a medical technician for years, so I thought about reaching out to him.
I'll look into this more in Italy.
Thanks again.
Paul Edwards5 said:Hello,
If anyone has any suggestions or can help out in any way, I would truly appreciate it.
My wife was diagnosed with a mesenchymal tumor in her pelvic bone—she's already undergone three surgeries. The first one was in St. Louis, where they opened her up, closed her back up, and told us everything was fine.
Of course, things weren't fine—a year later, she had an emergency surgery on a rib performed by Prof. Castellan, and the subsequent MRI showed all was well. However, after two follow-up MRIs, we saw it had returned, about 3 cm. Oncologist Herceg prescribed Nolvadex for the rib area, which worked for a while—the tumor actually stagnated.
But then the Nolvadex stopped working, the tumor grew to 7 cm, and she had to go back into surgery.
Prof. Castellan operated again, but there's a portion left that isn't operable and requires therapy.
We are considering radiation—it will be three months since the surgery on May 2nd—and the remaining part is 3 cm. Up until today, my wife hasn't received any actual treatment; she’s just heading in next week for radiation mapping.
For context, my wife was born in 1980. To be honest, Oncologist Herceg was quite dismissive toward her—he didn't really put in the effort.
I can't say the same for Prof. Castellan; he is a wonderful man.
Since we're completely lost regarding specialists for mesenchymal tumors...
If anyone has gone through something similar or can recommend another oncologist, I would be so grateful.
Best regards,
Does anyone have any experience with something like this?🤷
Hello,
I would be truly grateful if anyone could offer some suggestions or any form of assistance.
My wife was diagnosed with a mesenchymal tumor in her pelvic bone, and she has already undergone three surgeries. The first one took place in St. Louis—they opened her up, closed her back up, and told us everything was fine.
Of course, things were not fine; a year later, she had to undergo emergency surgery on a rib performed by Prof. Castellan. A subsequent MRI showed everything was okay. However, after two follow-up scans, we saw it had returned, measuring about 3 cm. Oncologist Herceg prescribed Nolvadex for the rib area, which worked for a while—the tumor actually stabilized.
Unfortunately, the Nolvadex stopped working, the tumor grew to 7 cm, and she had to go back into surgery.
Prof. Castellan operated on her again, but there is a remaining section that isn't operable, so she needs therapy.
The current plan is radiation; May 2nd will mark three months since the surgery. The remaining part is 3 cm, and up until this very moment, my wife hasn't received any treatment—she’s only going in for radiation mapping next week.
For context, my wife was born in 1980. Honestly, Oncologist Herceg was quite dismissive of her—he just didn't put in the effort.
I can't say that about Prof. Castellan, though; he is a wonderful man.
Since we are at a loss regarding who else specializes in mesenchymal tumors...
If anyone has had similar experiences or could recommend another oncologist, I would deeply appreciate it.
Best regards,