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

I believe in God, I pray, and I hold onto hope!

Had my mammogram this evening. Results show everything is fine for now! Thank God! Or rather... back to square one again.

Kevin Bishop10 said:Had my mammogram tonight, and everything looks fine! Thank God! Or rather, it’s back to square one again!

I think you need to get out there and get some actual diagnostics done. You don't have any more time to waste.

Angela Wright said:I think you need to head out for diagnostics immediately. There isn't any more time to waste.

Is there a reliable diagnostic center in the area? Or perhaps somewhere further afield? I have a PET CT scan from this past March. Which diagnostic procedure might actually yield some answers? My doctors seem to have reached an impasse; they aren't sure what else to try or where to look...

Kevin Bishop10 said:Is there a good diagnostic center in the US? Or maybe somewhere further out? I have a PET CT scan from March of this year. What kind of diagnostic procedure might actually give us some answers? My doctors are at a total loss right now; they don't know what else to try or where to look...

You could try sending the PET results for a second opinion. Honestly, not every radiologist is cut from the same cloth when it comes to competence.
Try reaching out to Rudjer or check out a private clinic like Medikol. Their radiologists are top-tier.
Make sure you upload everything—all the reports and the actual PET CD.
When you're dealing with these kinds of occult tumors that stay hidden for years, if I were in your shoes, I’d head straight to Germany.
From what I can gather as a layman, it looks like we started out dealing with some low-grade carcinoma. If this were something like melanoma, without proper treatment by now, things would be much worse, in my opinion.

Three years ago, I had a PET CT scan at Medikol, and even then, they couldn't pinpoint the primary site of the carcinoma. I'm going to try to pull some strings through a contact in Chicago to see if we can get more answers... The disease progresses slowly, but after 3.5 years, things are starting to look rather concerning.

Kevin Bishop10 said:Three years ago, I had a PET scan done at Medikol, and even then, they couldn't pin down the primary site of the carcinoma. I’m going to try to get in touch with them through a contact in Chicago, and we'll see what happens... The disease moves slowly, but after three and a half years, things are definitely getting worrying.

I did a little digging on occult cancer and stumbled upon this interesting video:


Just from general Googling, I found information supporting the probability of primary sites that Dr. Samia mentioned to you.

By the way, have you had a bone scintigraphy recently?
The reason I ask is because osteosarcoma was mentioned, and you can really only rule that out with a scintigraphy or an X-ray.
I even came across a type of Hodgkin lymphoma that progresses very slowly.
Have you actually been seen by a hematologist yet?

Back in February, I had a scintigraphy done, and some highly esteemed specialist insisted I undergo radiation on my lumbar spine to preemptively manage the pain. It hasn't even been a month, and the pain has become absolutely unbearable—I’ve had to rely on Tramal, though even that lost its effectiveness after a while. According to her assessment, everything visible points to metastases.

I’ve had four different dermatologists examine me in quick succession, and naturally, they all claim there is nothing suspicious on my skin—unless, of course, these are completely non-standard metastases (or at least nothing they've encountered before). They were practically dismantling my toes, peering from every conceivable angle, taking biopsies, sending things off for dermoscopy... and yet, nothing.

The first clinic I was referred to about three and a half years ago was for hematology. They drew four or five vials of blood, and based on those results along with some other bodily exams, if I recall correctly, the doctor simply informed me that I wasn't their patient.

After cycling through every possible clinic and doctor, I find myself in a position where I can no longer trust anyone.

And yes, clicking that link in the message just takes you to a page featuring a beach in Gradac.

It’s with a heavy heart that I’m writing to say my mother has passed away—her lungs finally gave out. It’s been about a year since the initial diagnosis, and honestly, she went through so much during chemo. She didn't deal with the kind of pain others usually describe, but those last three days... it was just terrible listening to her struggle to breathe.

wiredbear81

My heart truly goes out to you. You’ll likely feel this ache in your chest for a long while. Eventually, though—as the years pass—it will settle into nothing more than a wistful smile whenever you think of your mother. At that point, only the happy memories you shared will resurface...

wiredbear81, honestly, I'm looking for some insight here.

Has anyone here dealt with the Pimezon clinic? I noticed they offer second opinion reviews where an international medical board looks over your files. How long does it usually take to get their verdict? We’re unfortunately running out of time on our end.

Kevin Bishop10 said:I had a scintigraphy done back in February, and this brilliant doctor told me I needed radiation on my spine because the pain was going to be unbearable. Well, it hasn't even been a month, and the pain has been absolutely excruciating—I even had to rely on Tramal, and eventually, even that stopped working. According to her, everything visible points to metastases.

I had four different dermatologists examine me all at once, and of course, they claim there’s nothing suspicious on my skin—aside from these totally non-standard metastases (or maybe they just haven't seen anything like them before). They were literally pulling my toes apart, peering in from every conceivable angle, using magnifying tools, sending stuff off for dermatoscopy—absolutely nothing.

The very first clinic they sent me to 3.5 years ago was for hematology. They drew 4-5 vials of blood, and based on those results, the doctor ran some other body scans, if I recall correctly, only to tell me I wasn't their patient.

After cycling through every possible clinic and specialist, I don't trust anyone anymore.

And yeah, that link in the message just takes me to a page featuring a beach in Jordan.

Then it didn't save.
I have to Google it again.
It’s obvious you’re experiencing symptoms that indicate something these people aren't trained to recognize. Which, in turn, implies you need to get out to a major clinic with more specialized expertise as soon as possible.
http://m.annonc.oxfordjournals.org/c..._7/vii303.long
http://www.cancerresearchuk.org/abou...77SxBrreo0T.97
https://www.google.com/search?q=most+...+low+malignant

wiredbear81 said:It breaks my heart to write this, but my mother has passed away. Her lungs finally gave out. It’s been a year since the initial diagnosis, and she really went through the ringer with all that chemo. She didn't have the kind of pain others describe, but listening to her struggle to breathe over those last three days was absolutely devastating.

Please accept my deepest condolences.😢
I wish you strength and peace of mind as you move forward, carrying both her legacy and your own pride in how you handled this.

neoncyclist792 said:wiredbear81, honestly, I feel you.

Does anyone have experience with the Pimezon clinic? I saw they offer full documentation reviews and opinions from an international medical board. How long is the wait for that opinion? Unfortunately, we aren't exactly working with a lot of time on our side here.

I know Dr. Samia is the founder, and he’s basically a legend around these parts.
I haven't dealt with them personally, but knowing him and the crew—the kind of people who put all those fancy academic titles in their email addresses—it feels very high-end. They probably charge a premium for that level of prestige, too.

Yeah, I noticed his prices aren't exactly cheap. Do Dr. Cepulic's patients actually go to him for their treatments, or does he just refer them out to a hospital in Chicago? I'm wondering how that works if we aren't local to Chicago.

I found myself deeply disappointed by my experience with Dr. Samia, despite his reputation as a leading figure in oncology. He completely failed to recognize that my mother was suffering from significant ascites. The entire staff there acts as if they are some high-level medical board, which, looking back after some time has passed, feels somewhat pathetic. There is also another matter that I cannot address publicly here due to its extremely negative nature. We did not go to Cepulic.

Well, I tried sending my mom's medical records over to Dr. Samia, and the way they handle things is basically you send the files, they send you an invoice, you pay it, and then—supposedly—you get their opinion. So, I sent everything over, but then... nothing. We never even got the bill, let alone any actual feedback or opinion from them. I guess we just kind of gave up on trying to get a hold of him in the end, so we just left it at that.

Angela Wright said:Then I forgot it.
I have to Google it again.
It’s obvious you’re experiencing symptoms that suggest something they aren't even aware of yet. Which, again, implies you need to get out to a major clinic with higher patient turnover for a thorough evaluation, sooner rather than later.
http://m.annonc.oxfordjournals.org/c..._7/vii303.long
http://www.cancerresearchuk.org/abou...77SxBrreo0T.97
https://www.google.com/search?q=most+...+low+malignant

The pathology report I received from the clinic suggests the carcinoma could be located on the eyelid, the upper digestive tract, the skin, or the breast. I had a mammogram; everything there remains unchanged. I underwent a gastroscopy, and both my stomach and duodenum showed no suspicious changes. As for my skin, four dermatologists looked at it together recently, and according to them, there is nothing there. Does that leave only the eyelid?!

I’ve read through these links and will attempt to mention them to the oncologist—assuming he’s actually willing to listen...

Is it possible that immunotherapy alone could provide some positive progress?

neoncyclist792 said:Yeah, I noticed his rates aren't exactly cheap. But do Dr. Cepulic's patients actually go to him for their treatments, or does he just refer them off to some hospital in Chicago? How does that work if we aren't living in Chicago?

I've been hearing positive things through the grapevine. You can get your therapy done right there with him.

Kevin Bishop10 said:The pathology report I got from my doctors implies the cancer could be in the eyelid, upper GI tract, skin, or breast. I had a mammogram, and everything looked normal there. I went through a gastroscopy, and both my stomach and duodenum showed absolutely nothing suspicious. I even had four different dermatologists check my skin recently, and they all said it looks fine. Is it really just the eyelid left to check?!

I’ve been reading up on some links and I’ll try to bring them up with the oncologist—assuming he’s actually willing to listen...

Is there any chance immunotherapy alone could show some positive progress?

If I were you, I’d take that mammogram to a second opinion somewhere else. It happens more often than you'd think—an ultrasound picks up changes that a mammogram misses because the person reading the scan just didn't catch it. Who is interpreting the results matters immensely.
And I have no idea which immunotherapy you're talking about. Not every drug qualifies, and immunotherapy isn't a magic bullet for every single type of cancer.