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

My grandmother’s lump has been growing steadily since last Christmas—it’s located just above her left collarbone (I know I typed chest bone, my mistake)—and we simply haven't been able to get it under control... after we finally managed to get her in for an evaluation, the doctor ordered a biopsy. By then (around May), the mass was already about the size of a woman's hand. The results confirmed malignant cells, which led the doctor to initially suspect lung cancer; however, once she reviewed the X-ray and saw the lungs looked clear, she became uncertain. She started leaning toward lymphoma instead and suggested removing a lymph node for testing (the analysis was supposed to be sent to Washington, D.C., but they ended up doing it at our local hospital). Even then, they still couldn't pinpoint the exact cause—they just know there is a primary tumor somewhere in her body. After all this back-and-forth, we are heading to the MD Anderson Cancer Center today, though they have scheduled us for further follow-up on July 21, 2014. We've been going through these exams for a month now without any real answers, and the local hospital actually suggested she be admitted for ten days to undergo more intensive testing—including another node removal and another biopsy—but Grandma refused to agree to that. In the meantime, we have to get deep lung imaging and a full blood panel done. I know how bad this looks—I am painfully aware of that—but we are just searching for even a tiny shred of hope, which is why I came here... I just hope there is still a way for us to help her...

The biopsy results have finally come back, though they were processed at the local hospital rather than being sent over to MD Anderson Cancer Center. Here’s what the report states: the sample—which was identified as a lymph node on the left side of the neck—shows an irregular mass measuring approximately 2 cm in diameter. Upon histological examination, the cross-section reveals "follicular" lymphatic areas in the center, which are dominated by necrosis. The peripheral clusters are mostly arranged in a solid-vortex pattern, consisting of polymorphic hyperchromatic tumor cells. Essentially, the histological picture points toward a metastatic, poorly differentiated carcinoma.

Robin Johnson26 said:The biopsy was done, but at some local community hospital—they didn't send him over to MD Anderson Cancer Center. Here’s the pathology report: the material (labeled as a lymph node on the left side of the neck) shows an irregular mass about 2 cm in diameter. Histologically, the cross-section reveals "follicular" lymphatic areas in the center with dominant necrosis. The peripheral clusters are mostly in a solid-swirling pattern consisting of polymorphic hyperchromatic tumor cells. The histology points toward metastatic poorly differentiated carcinoma.

A biopsy report is just a scrap of paper if you don't verify it properly.
Get those samples sent straight to New York City immediately!

Robin Johnson26 said:Ever since last Christmas, my grandmother has been dealing with this lump growing just above her left collarbone—she actually misidentified it as her breastbone. We tried everything to get it under control, but nothing worked. Once we finally got her in for an exam, the doctor ordered a biopsy. By then, around May, the mass was already the size of a woman's hand. The biopsy confirmed malignant cells, and the doctor initially suspected they might have spread from lung cancer. However, after looking at her chest X-ray, which came back clear, she became uncertain and started suspecting lymphoma instead. She suggested removing a lymph node for testing; the samples were supposed to be sent to Washington, D.C., for analysis, but they ended up running them at the local hospital instead. Even then, they couldn't pinpoint the source, only stating that there is a primary tumor somewhere in her body. After all this runaround, we’re heading to the MD Anderson Cancer Center today, though they haven't scheduled our follow-up until July 21st, 2014. We've been stuck in this loop of examinations for a month now without any real answers. The local hospital suggested admitting her for ten days to run deeper tests, including more biopsies and punctures, but Grandma refused to go in. In the meantime, we have to get deep lung imaging and a full blood panel done. I know how bad this sounds—I'm fully aware of the gravity here—but we're just grasping at straws, searching for any shred of hope. That's why I'm posting here... I just need to know if there's still a chance to help her.

If you can manage it, get her over to the Mayo Clinic! I’m not trying to bash the other facility, but when it comes to these kinds of situations, the Mayo Clinic is miles ahead. Waiting until July 21st while facing a potential malignancy is simply too much time to lose.

To start things off, you really need to take a close look at the stomach...

Mima29, I hate to say it, but there’s really no point in trying to offer any concrete hope right now. Everything hinges on getting a timely and accurate diagnosis—that's the foundation everything else is built on. Right now, you're dealing with a grandmother who's being difficult and a diagnosis that's questionable at best. It’s a pretty rough hand to be dealt all at once. 😢

Angela Wright said:That PHD could spin any story they want—they're masters of twisting the truth.
Just get the samples and head straight to the Mayo Clinic right now!

Don't you think there’s still a chance for an error here? I mean, shouldn't that PHD be able to provide specific details regarding where the primary site actually is?

Angela Wright said:Mima29, I am truly sorry—I wish I could offer something more substantial than just sympathy, but even hope feels a bit out of reach right now. Everything really hinges on getting a timely and pinpoint accurate diagnosis; that is where the entire journey begins. In this situation, you're dealing with a grandmother who is only partially cooperative and a diagnosis that seems questionable at best... all things considered, it's a very difficult way to start. 😢

I understand completely. Honestly, even I feel lost at this point—with a malignant tumor diagnosis in hand, it feels like everyone is just leaving us to wait in limbo...

Angela Wright said:If there is any way you can, please head over to the Mayo Clinic! I don't want to sound like I'm bashing the local Institute... but let's just say the Mayo Clinic is miles ahead when it comes to handling these kinds of situations. Waiting until July 21st for a malignant diagnosis is simply too much time to be left hanging.

Even if we were to go to the Mayo Clinic, I honestly have no idea which department I should even call, or what specific referral I should be asking for... everything feels so incredibly murky since we don't have definitive test results in hand yet, you know? Our local hospital started off on the wrong foot with their procedures, and working with the PHD hasn't gotten us anywhere—they still haven't produced actual results beyond just suspecting it might be a primary tumor. But then again, it's still not clicking for me: we have one clear piece of information—that it is indeed a malignant tumor—so the fact that the doctors are essentially at a loss for how to proceed is truly unacceptable....

Robin Johnson26 said:Do you think there might still be room for error here? I mean, shouldn't they receive information regarding where the primary site is located according to the PHD?

I’ve been calling to request samples and asking them to send everything over to Washington, D.C.—not because I’m being difficult, mind you—but because the doctor is just absolutely insufferable. She actually had the nerve to tell me I wasn't competent enough to handle this and questioned why I was even interfering with their work...

Robin Johnson26 said:I call for samples and ask them to be sent to Washington, D.C., and they aren't just being rude—the doctor is being utterly unbearable. She actually told me I wasn't competent enough to handle this and asked why I was interfering in their business...

Tell her she can hand them over nicely, or she can receive a formal memorandum from a law firm detailing the specific fines if she ignores a direct request. You have an absolute right to access those samples and seek a second opinion without any repercussions. This has nothing to do with her, the hospital, or any biochemist, and it certainly has nothing to do with your competence—for heaven's sake, you aren't the one performing the analysis. It is a legitimate patient right, and if she has an issue with that, that is her own private problem. Mayo Clinic issues samples without any hassle upon signing a release for repeating a PHD elsewhere; it’s unbelievable that this is becoming an issue at a small clinic.
While we might not know the exact location of the primary tumor yet, getting a more detailed and potentially superior cell analysis could pinpoint where the tumor is located and help rule out things like sarcoma. Right now, Grandma's diagnosis is an occult tumor (metastases from an unknown primary site), and in situations like this, it would be standard practice to refer a patient to a major medical center for more in-depth testing rather than playing God and wasting precious time just to feed an ego.

I don't think they performed the analysis incorrectly; I think they simply lacked the experience to recognize certain indicators.

You have to get Grandma on board and insist that she cooperates if she wants to actually get treated, because if she doesn't, everything is going to go downhill fast. If she refuses, then you'll just have to respect her decision, no matter how much it hurts.

Robin Johnson26 said:If we were headed to Mayo Clinic, I wouldn't even know which department to call or what specific referral to ask for... everything feels so incredibly blurry without concrete test results in hand, you know? The local hospital here messed up the initial procedures, and working with the PHD didn't achieve a damn thing because they're still stuck guessing if it's a primary tumor... but look, I just don't get it—we have one solid fact, that it's a malignant tumor, and the idea that doctors are essentially spinning their wheels with that information is just plain wrong....

Call the oncology department at Mayo Clinic. Explain the whole situation—tell them how the local hospital can't provide a proper diagnosis and that you want to redo the PHD. They should point you toward the next steps. If they actually agree to see you, cancel the appointment at the Institute; honestly, the Institute is a much better bet than wherever Grandma is stuck right now. And frankly, try to pull some strings if you can. Unfortunately, in this system, things rarely move forward unless you have a connection.😢

My father-in-law was admitted to the hospital yesterday. They’ve started running several tests that they couldn't get done back in Boise—things like an EKG, spirometry, and getting an anesthesiologist to weigh in. He’s currently undergoing some detoxing/cleansing today and tomorrow, so it looks like he’ll likely head into surgery by Thursday or Friday.
The hardest part right now is just this agonizing waiting game; wondering what they’re actually going to find once they open him up... but we're keeping our fingers crossed for the best outcome.

Amanda Miller69 said:My father-in-law was admitted to the hospital yesterday. They had to run a bunch of tests they couldn't do back in Boise—EKGs, spirometry, getting an anesthesiologist involved, all that stuff. He’s spending today and tomorrow flushing his system out, and it looks like he’ll be headed into surgery by Thursday or Friday.
The absolute worst part right now is the waiting game, just wondering what they're going to find once they actually open him up... but we're praying for the best.

Zachary, things will play out how they play out. You've got a daughter anyone would be lucky to have, so hold your head high. You pulled off a miracle in such a short window, and that's purely because you've got that damn experience under your belt...
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.. honestly, I have to admit, this just feeds into my paranoid suspicions that everything that happened with my mom was actually just a way to gather experience for what comes next... it's pretty terrifying to think about.🙂

Angela Wright said:Zachary Howard2, things will work out—it always does. You have an incredible talent to be proud of. What you achieved in such a short timeframe was nothing short of remarkable, and frankly, it’s purely due to your extensive experience...
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.. otherwise, I have to admit—this actually fuels my paranoid suspicions that everything that happened with my mother was just a way to gather experience for what's next... it's a bit terrifying, really.🙂

Since you are so selfless about sharing your journey with us, I truly believe that difficult start with your mother was simply the foundation of your expertise—and I am certain that good deeds come back to you, ensuring you won't need to face those same struggles with your own loved ones.

Angela Wright said:Zachary Howard2, things will work out. You’ve got an incredible skill set to be proud of. Pulling off a miracle in such a short window is purely a testament to your damn experience...
I feel proud when I succeed, and if we manage to get through this together with everyone intact, I'll feel even more so 🙂
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.. otherwise, I have to admit, it really just fuels my paranoid suspicions that everything that happened with my mom was actually just gathering experience for what's coming next... it's terrifying.🙂

Unfortunately, cancer has become the modern-day "plague." It feels like every other day I hear about someone I know getting sick. Even my father-in-law mentioned that two of his recent colleagues—who ran into each other at a hospital in Boise—have been diagnosed, along with one of their sons.

Anyway, my father-in-law is undergoing a round of follow-up tests just to ensure everything is current, and he’s heading into surgery on Monday... I'm keeping my fingers crossed that it goes smoothly and that there isn't any bad news waiting for us afterward.🙄

driftingsurfer14 said:Since you’re being so selfless and sharing everything you've learned with us here, I suppose that painful start with your mother was really just the beginning of gaining necessary experience. I truly believe that good karma comes back around, and hopefully, you won't have to face this again with your own loved ones.

Angela Wright helped all of us out by starting this thread in the first place. Dealing with this cursed disease means you end up gathering quite a bit of unwanted expertise. Personally, I could really use the "experience" I gained while caring for my mother, who passed away from ovarian cancer; at least now I feel somewhat prepared for what to expect with my mother-in-law. Back when it was my mom, I tended to bury my head in the sand—partly because I just didn't want to face the reality, hoping against hope that she would pull through. (I see myself doing the exact same thing with my husband right now).

Amanda Miller69 said:Angela Wright helped us all out by starting this thread—it's vital. One gains such heavy experience dealing with this cursed illness. Personally, I find the experience I had with my mother, who passed away from ovarian cancer, to be "useful" now—at least I know how to handle things with my mother-in-law. With Mom, I tended to bury my head in the sand at first—perhaps because I simply didn't want to face the truth and hoped she would pull through (I see that same pattern happening with my husband right now).

Yes, I understand. I was constantly pestering her via private message—and Angela Wright, thank you for your initiative. My father, unfortunately, lost his battle—but I truly hope everything turns out fine for your loved ones.

driftingsurfer14 said:Yes, I'm aware. I've been pestering her through both private messages and Angela Wright, so thanks for that. My father, unfortunately, didn't win his battle, but I truly hope everything turns out fine for your loved ones.

Please accept my condolences.😢

So sorry, driftingsurfer14. Realized I haven't checked in on you for a while, and I didn't even ask how things were going... just been hoping for the best.