I had a conversation with the oncologist this morning, and the news wasn't good—she mentioned that the disease has spread, and from her perspective, there isn't much more she can do. Her role now is essentially to explain the situation clearly and refer him to an internal oncologist to see if there are any remaining options at all. If that specialist says we've hit a dead end, I will absolutely be seeking a second opinion... does anyone have a doctor they would recommend? We’re heading to her office this Tuesday, so we'll see what the verdict is. Even though I knew things were looking grim, this still hit me hard and left me feeling pretty shaken. I'm honestly dreading how my husband and mother-in-law are going to take this news.
I’m adding the beginning of the report here, as it provides a slightly clearer description:
PET/CT ("low dose" CT): A whole-body scan was performed, extending down to the proximal portions of the thighs. Increased activity uptake is noted in small right supraclavicular nodes, SUVmax=2.5. Pathological activity uptake is visible in an enlarged right paratracheal node, SUVmax=9.4, as well as in several infracarinal, pre-aortic, para-aortic, and paraesophageal lymph nodes, SUVmax=8.4. Pathological activity uptake is observed in several lesions within the liver and in one lesion in the spleen, SUVmax=11.1. Pathological activity uptake is present in the celiac region lymph nodes, the hepatogastric ligament area, and the retroperitoneal lymph nodes, SUVmax=13.3. Pathological activity uptake is seen in an infiltrate within the musculature and under the abdominal wall in the left hemiabdomen at the level of the umbilicus, SUVmax=8.3 (with another possible sub-wall infiltrate at SUVmax=3.8?).
My father-in-law’s PET CT results finally arrived. To save everyone from a wall of medical jargon, I won't paste the entire report here—just the conclusion:
Pathological glucose metabolism is present in the right supraclavicular lymph nodes, within an expansive, slightly infiltrative lesion/lymph node conglomerate located in the upper mediastinum (right paratracheal and paraesophageal areas), the thoracic para-aortic lymph nodes, lesions in the liver and spleen, the aforementioned abdominal lymph nodes, and a tegumentary expansive lesion left of the paraumbilical region, indicating active malignant disease. The CT also shows two small, FDG-negative irregular intrapulmonary lesions in the upper lobes, which are morphologically atypical for potential secondary sites.
From what I can gather as a layman, there are metastases in the lymph nodes, liver, spleen, and abdominal lymph nodes. However, the rest of this terminology is completely over my head—I have no idea where these things are located or what they actually imply. If anyone could break this down for me, I’d appreciate it. I’m sending this over to the oncologist now to figure out our next move... I'm not sure if they'll recommend chemo, radiation, or something else. Does anyone happen to know which approach tends to be more effective? I realize the oncologist will make the call, but I’ve always preferred to be prepared for the conversation.
My father-in-law had his tumor markers drawn the day before yesterday. I called the secretary over at Jordanovac today to get some clarity, but she wouldn't give me the actual number. She just vaguely mentioned that it was "quite high"—the doctor happened to be in the room at that exact moment, so she brushed it off by saying he would assess the situation further. I mean, look, I’m not a doctor, and I’m certainly not qualified to make a diagnosis, but why is it such a massive ordeal to simply share the digit? A normal reading should be under 3. Is we talking 300, 3,000, or 30,000? 😠
I can't help but feel this creeping dread about what the PET scan is going to reveal. I'm terrified that once we have those results, we'll just be bracing ourselves all over again for whatever nightmare comes next...
Ronald Evans33 said:Hi everyone, I'm new here and could really use some advice. I found out today that my grandfather has cancer. It hit me pretty hard because we are incredibly close; he’s the one who raised me since I grew up without a father. Anyway, I won't ramble too much. I'm looking for some perspective on whether or not I should tell him. My mom, aunt, and grandma have all decided they aren't going to say anything to him. They’re actually meeting with his doctor tomorrow to discuss whether he should undergo surgery or not. Personally, I feel like it's unfair of them to keep him in the dark. He should have the right to decide for himself—after all, it's his body, not theirs. :-( It’s an incredibly heavy situation, I admit, but I just don't think they're doing the right thing. My grandfather is mentally sharp and perfectly capable of making his own decisions, so I can't help but feel they're wrong to withhold this from him...
If I were in your shoes, I'd tell him. There's honestly no point in keeping secrets; he’s bound to find out eventually, whether it's through a doctor, a slip of the tongue, or by seeing the medical reports himself. Perhaps the best approach is to soften the blow—you don't have to be blunt about how dire everything is, and you can certainly try to stay optimistic about the treatment options.
In my experience, my in-laws kept my father-in-law's diagnosis a secret. We didn't realize anything was wrong until three months later when he ended up in the hospital, and even then, only because I pushed my husband to grab the medical files and see what was actually happening. If we had known sooner, there might have been more we could have done to prepare.
Rachel Wood27 said:Dear Fiza, first of all, I am so sorry for what your father-in-law is going through. I read this thread regularly and follow everyone's progress, so I know exactly what you went through with your own mother.
Regarding your question about the tumor marker, based on my own experience (my dad gets his CYFRA 21-1 checked every three months), these markers can be tested at general hospitals (we get his done in our local area), and I suspect almost any well-equipped private lab could do it too. As for the cost, I honestly haven't a clue. My dad usually has his blood drawn for the marker at our local health center clinic, and then we send the sample along with the requisition via a courier service to a larger facility that handles all sorts of specialized testing. They actually transport urine and stool samples to the main hospital every day, so we just piggyback on their transport service for other things. The results for the marker are usually ready the same day, and the same courier picks them up the following day when they go to collect the culture results, so we just grab them when they arrive.
I imagine you might even be able to get the marker tested at your local hospital; just give their lab a call and ask. I believe a place like Medikol would offer it as well, and they might even be able to do it on a Friday if you catch them. It’s worth a phone call. Just make sure we are talking about the same thing—CYFRA 21-1—since that's what you mentioned.
Sending you all my best wishes for good results!
Thank you; I truly hope your father stays healthy and well, too.
We have a PET CT scheduled for January 29th. I plan to arrange to pick up the results in person as soon as they are finalized so we aren't stuck waiting for them to be mailed while the clock is ticking... I told him he should get the marker drawn that same day at the hospital (yes, it is CYFRA 21-1) so we have everything ready. As for this oncologist, despite being recommended, it feels like he's already written my father off. I'll see what he says next time, but I think I'm going to look for a different specialist. He was recommended to me by one of Dr. Erceg's colleagues at the hospital. Does anyone here have experience with him, or perhaps a recommendation for another oncologist?
Naturally, we didn't manage to get anything accomplished with the oncologist today. She reviewed the results and noted that the report is quite ambiguous; it suggests the findings could be indicative of secondary growths, though they don't necessarily have to be. She took the report and the CD over to the radiologist, who agreed that while it could represent metastases, the picture is too blurry—we really need a PET/CT to get any clarity. The oncologist actually questioned why the CT wasn't performed in Washington, D.C., rather than in a smaller town like Pakrac. Honestly, I should have insisted on having it done in D.C. immediately and pushed for a PET/CT instead of just a standard MS CT... though I suppose the main difference lies in the scan resolution and depth. So, there's no progress. We’ll head over to Medikol with the recommendation, but then we’ll just be waiting another week or ten days for them to order it.😠
Does anyone happen to know where one can get tumor markers drawn privately, and what the typical cost looks like? She advised against seeing the surgeon for a follow-up until the PET/CT is completed. Apparently, that specific type of marker (CYFRA) is only tested at Mercy Hospital, so she was thinking of handling it there while we were already in the area—unless, of course, it's possible to get it done sooner elsewhere to avoid the wait.
Angela Wright said:Fiza mentioned that they’re actually looking at using Xeloda off-label for this diagnosis. You might want to double-check that. Given that, for some reason, he wasn't considered a candidate for oncology treatment initially, I'm worried there isn't much wiggle room now either... well, life happens, I guess. 😢 Hang in there.
The oncologist scheduled us for Thursday after 1:00 PM. We have a referral for an internal medicine oncologist to decide on the chemotherapy path, so we'll finally see which direction we're heading this Thursday. My mother-in-law is hoping everything turns out fine, and I just can't bring myself to tell her how things actually look, even if I eventually have to 🙄
I had some trouble getting the file to upload, so I’m just going to type out the results from my CT scan instead... it’s a bit of a long one, so please forgive me in advance.
A CT scan of the chest and abdomen was performed using native 5 mm slices, supplemented by a manual intravenous administration of contrast media on a single-slice CT scanner. Regarding the status following the subtotal esophagectomy and esophagogastric anastomosis: In the area spanning the junction between the proximal and middle esophagus, the esophagogastric anastomosis is clearly visible. While this imaging method allows for a reasonably clear morphological view of that specific region, there is an oval soft tissue mass measuring approximately 24x22 mm located ventrally to the anastomosis, positioned between the trachea and the proximal third of the esophagus. Within this mass, there is a small, eccentric, hyperdense zone—likely a lymph node with some calcification—though given the regular contours of the mass, the possibility of residual primary disease seems less likely at this stage. The CT scan shows some subcarinal lymph nodes that have multiplied, with the largest measuring up to 12mm. There are also some smaller lymph nodes in the pretracheal area reaching about 5mm. Aside from those, I didn't see any other enlarged or extra lymph nodes in the rest of the mediastinum shown on the imaging. The axillary lymph nodes show a fatty hilum and measure up to 10mm in diameter. The heart is mostly within normal limits, though there are some calcifications present in the coronary artery area along with a calcified aortic valve. Additionally, the aorta shows a normal lumen width, despite some signs of atherosclerosis. The lung lobes appear expanded, and there are no definitive signs of intrapulmonary spread of the primary disease. In the area of the posterior segment of the right upper lobe and the superior segment of the right lower lobe, some scarring and partial ventilation obstructions are visible. There is no evidence of pleural effusion. The liver shown here appears to be of an appropriate size. However, the parenchymal structure is natively inhomogeneous. Specifically, there is a hypodense zone measuring 24mm located subcapsularly within area II; following IV contrast administration, this area shows peripheral imbibition. Additionally, a formation with identical characteristics is visible subcapsularly in area VIII.🙏So, looking at the imaging results: there's an IV application showing a diameter of up to 19mm, and in the area of segment VI, we’ve got a subcapsular diameter of about 20mm. These could potentially be secondary growths. As for the rest of the liver parenchyma, there aren't any visible lesions or significant changes to report. The gallbladder appears to be an appropriate size with a normal wall thickness, and there are no detectable stones or sediment within the lumen via this method. Additionally, the bile ducts show no signs of dilation. The spleen looks morphologically normal on the scan. The thyroid gland appears to have a homogeneous structure, surrounded by stable levels of peripancreatic fat, with no focal lesions or abnormalities detected on the native imaging layers. The adrenal glands appear morphologically normal. The kidneys appear to be in their normal anatomical positions, showing appropriate size and shape. The parenchymal thickness looks standard, and there are no signs of hydronephrosis or kidney stones. The CT scan results show enlarged and numerous lymph nodes extending from the level of the celiac trunk down to just below the origin of the right renal artery, spanning both the interaortocaval and lateroaortic regions. The largest of these nodes measures up to 22mm in diameter. On the left side of the anterior abdominal wall, right next to the rectus muscle, there’s an oval-shaped mass measuring roughly 33x23mm. It looks somewhat inhomogeneous on the CT scan. While this could potentially represent something secondary, we have to consider that this is the exact site of a previous stoma. Because of that, it might just be scar tissue. To be certain, it would be wise to compare this current CT scan with the imaging done during the last hospitalization—specifically the one taken right before the surgery—since those prior records weren't included here. Based on the abdominal imaging provided, there is no sign of free fluid.
As far as I can gather from the results, there's metastasis in the liver and lymph nodes, with the possibility that it's spread elsewhere as well. I'm sending everything over to my oncologist tomorrow, so we'll see what the next steps look like once they've had a chance to review it. In the meantime, I’d welcome any thoughts from the community—especially if any of our doctors happen to be lurking here.
Angela Wright said:So, I decided to dive down a Google rabbit hole, and this is what I stumbled upon:http://oftankonyv.reak.bme.hu/tiki-i...hest+Radiology Says: So, I decided to dig a little deeper into the Google rabbit hole, and here is what I managed to unearth: The Mayo Clinic provides a fairly comprehensive breakdown regarding melanoma, which is helpful if you're trying to make sense of things. It covers everything from how the disease develops to the various ways doctors approach treatment. Essentially, melanoma starts when the pigment-producing cells—melanocytes—undergo some kind of genetic mutation. This causes them to grow uncontrollably, turning into cancer. While it can show up anywhere on the body, it’s most frequently found on the skin, often appearing as a new spot or a change in an existing mole. When it comes to diagnosis, doctors usually start with a physical exam. If they see something suspicious, they’ll perform a biopsy to get a closer look at the cells under a microscope. Once they have a diagnosis, the next step is typically staging. This involves determining how deep the tumor has penetrated and whether it has spread to nearby lymph nodes or other parts of the body. They might use imaging tools like a CT scan to get a clearer picture of what's happening internally. Treatment isn't one-size-fits-all; it depends entirely on the stage and the specific characteristics of the tumor. For early-stage cases, surgical removal is the standard move. However, if the situation is more advanced, things get a bit more complex. You might see options ranging from immunotherapy—using drugs like Opdivo + Yervoy to help your own immune system fight the cancer—to targeted therapies like Zelboraf, which targets specific mutations. In some instances, traditional methods like chemotherapy using agents such as Adriamycin or Xeloda might be part of the plan. It’s a lot to process, but having this kind of roadmap can make the clinical side of things feel slightly less overwhelming. It doesn't necessarily have to be something they haven't dealt with before, nor does it strictly need to be something major—like, say, a new metastasis. In any case, once everyone sees the results from the CT scan, they'll all be feeling significantly more enlightened.
The CT results finally came in, and frankly, I’m not liking what I see. Of course, my father-in-law went through the whole report and insisted it was all disconnected nonsense, but even through his skepticism, I managed to catch the grim details. There are some 24mm masses on the trachea, along with other growths mentioned elsewhere—apparently involving secondary sites in the liver and a few other spots, though my memory is already starting to fail me on the specifics. A doctor friend of his suggested that if he didn't undergo chemo for the previous situation, then he shouldn't bother with this one either—implying it's perfectly fine to skip. Honestly, it feels like we’re being played again, just like the first time. On top of that, he mentioned there is fluid in the lungs... what exactly causes that to build up? Right, I completely overlooked the enlarged lymph nodes; what exactly are we looking at there? I need to get my husband home as soon as possible to pick up those test results. Once he has them, I’ll be forwarding them straight to his oncologist, but I have to admit, I am feeling incredibly anxious about this.
Angela Wright said:Well, one thing is certain: it’ll take anywhere from a week to ten days. But since the holidays are right around the corner, I wouldn't be surprised if we don't see anything until after New Year's.
The lung results finally came in, though my mother-in-law can't quite make sense of them, so things are a bit fuzzy on my end. It mentions massive adhesive changes—which I did a quick Google search on and it seems they're just scarring... I really hope so. It also mentions translucency of the left lung parenchyma (which I have absolutely no clue what that means, and couldn't find much help with online), but overall, I wouldn't say it looks significantly worse than the last report. I'll have a clearer picture once I actually get my hands on the paperwork.
We're still waiting on the CT scan results and keeping our fingers crossed for the best. They'll be drawing the markers over at Jordanovanc. The follow-up appointment is scheduled for the beginning of next month; I'm holding out hope that everything turns out okay.
Carol Price6 said:So, here’s the latest update. I stepped in and we managed to get under the care of Dr. Janevski. Apparently, he’s top-tier. I don't have much reason to doubt the word, especially since I don't know anyone at Mercy Hospital, and I tend to trust that professionals actually know what they're doing. The surgeon mentioned that without the PET-CT results, he can't make a call on whether the tumor is operable. Dad is scheduled for admission on January 5th, and I suggested today that we just go private to get the PET-CT done now, but he shot that down immediately. He insists that once he's hospitalized again, they'll run it at the hospital and there's no need to throw money away. They did an MRI with contrast, as well as a CT, and unfortunately, he had a horrific reaction—a terrible rash all over his body 😢 I feel like time is slipping through our fingers, and frankly, I'm mentally exhausted. Normally, I'm a pessimist—the kind of radically, aggressively pessimistic type... this might just bury me. I know the most important thing is to provide support and stay positive for those who are ill, but for me, the absolute worst thing in life is someone withholding information. I need to know everything, even if figuring out how to process it becomes my own personal burden. Everyone is advising me not to tell Dad anything, just to reassure him that the surgery will happen and he'll be back out by the ocean... the hardest part is that I can't even tell him they've confirmed it's cancer, because he's in total denial about the whole thing...
Dr. Janevski operated on my father-in-law (esophageal cancer) and did a truly stellar job—so much so that radiation or chemo wasn't even necessary, despite it being Stage IIIC (it had spread to the lymph nodes, which were removed). Just be very careful about how they care for your dad after the surgery; my father-in-law was somewhat neglected, which ended up costing him two months in the hospital 😢. You can look back at my previous posts to see what I mean . Fight alongside him and don't let him give up. I lost my mother to ovarian cancer, and when we first found out my father-in-law was sick, my stomach tied itself in knots. I thought I couldn't go through this all over again, but once that initial shock passes, you just have to keep moving forward.
My father-in-law is heading in for a chest X-ray today, followed by a CT scan of his abdomen and thorax the day after tomorrow... please keep your fingers crossed that the results come back clean. I assume the X-ray report will be ready almost immediately, but does anyone happen to know what the typical wait time is for CT results? He’s also supposed to have some tumor markers drawn, but he mentioned they’ll handle that in Washington, D.C., during the actual consultation. It seems a bit counterintuitive to me—wouldn't those lab results need to be ready for the appointment too?
Amanda Wells75 said:Angela Wright, I am so incredibly sorry to hear that your mother lost her battle with the illness, but as you noted, things were caught quite late. I’m honestly terrified because my own mother might be facing a similar situation; her diagnosis also came in at stage IIIC. I’m at a loss for words, other than hoping that medical science has advanced enough to put my mom's condition into remission—just enough to give her body a chance to recover and, more importantly, to give her some quality time to enjoy her grandkids and being with those she loves most. Did your mother fight the disease for a long time?
Unfortunately, ovarian cancer is a remarkably insidious disease that rarely shows any symptoms in its early stages. My mother was also diagnosed at stage IIIc, and it only came to light after she started losing her appetite for food. She actually lived for two years following the diagnosis, despite doctors giving her a prognosis of only six months. If her body had been able to withstand that last surgery, I truly believe she would have had a few more years in her. One has to hold onto hope until the very last day.
Angela Wright said:I’m quoting this wonderful post from one of our members over on the breast cancer thread. In my opinion, she perfectly captured the essence and the core truth of the entire struggle—facing the diagnosis head-on and fighting for successful treatment. I hope many people find some guidance here on how to maintain a healthy mindset toward the problem and ultimately beat cancer. 🙂
On a related note, I met an extraordinary individual today—a colleague of my father-in-law's—who has been battling a brain tumor for 24 years now. He just finished a Breuss diet regimen; he’s quite thin, weighing about 105 pounds, but his will to live is absolutely ferocious. He’s 62 years old. I lost track of how many times he’s managed to overcome a recurrence through this approach. Beyond that, he’s a vegetarian who eats exclusively healthy food grown in his own garden, and he balances it all with yoga and meditation. He is an incredibly positive person.
Just three years ago, he actually ran a marathon of 38 miles and has collected plenty of medals from various races he’s participated in. He even offered some dietary advice to my father-in-law, though my father-in-law is sticking strictly to the plan we already laid out for him.
Angela Wright said:They’ll probably suggest it through the AMA as well... and if I’m being completely honest, I’ve never been a fan of those flu shots. My reasoning might not exactly win me any points with the medical establishment. 😁
I actually got vaccinated once in my life, and that specific year, I caught a flu so brutal it knocked me sideways for twenty straight days. I haven't touched a vaccine since, and remarkably, I haven't dealt with a flu like that again.
I even asked my oncologist for her take on the matter, and she just said: "Check with the AMA to see if you need my recommendation for a CT scan. Also, coordinate your vaccination schedule with them."
My brother-in-law is considering getting a flu shot, but given his underlying health issues, is that actually a smart move? He’s scheduled for an abdominal CT scan in about two months, and since I know how long wait times can be for these things, I was wondering if he should just go ahead and ask his primary care physician for a referral now, or does he strictly need a recommendation from his oncologist first?
Since he’s feeling better lately, he’s actually suggested stopping the beta-glucan supplements altogether, but I told him there's absolutely no way he's cutting that out just yet.😵
Angela Wright said:According to the official guidelines, things should go exactly the way she described... personally, I’d follow my gut. Look, we both know these markers aren't the most reliable thing in the world. If I were in her shoes, I’d probably be heading in for tests every single month (that's just my 🙂 nature), but when I actually sit back and think about it—is it really worth drawing blood every month for something that isn't even foolproof? The psychological toll of waiting for results, only to have some value tick up slightly—even if it's still within the normal range—and then dealing with the inevitable drama and waiting all over again... especially if it was just caused by a minor inflammation or a common virus... ...stick roughly to the guidelines, but if you feel like you need to check sooner, just do it.
One has to learn to relax a bit, focus on life and the usual things... honestly, he handled everything incredibly well. Goodness knows how much he struggled in the hospital with those infections; I was genuinely worried his immune system might completely give out and everything would flare up again... he'll be fine.
That’s exactly what I was thinking too. A marker isn't always a perfect indicator of what's happening, yet cancer is such an unpredictable beast—what if things take a sharp turn for the worse in a three or four-month window? Thank God, he's doing well now. We're supporting him with beta-glucan, beet juice, royal jelly, and we've cut out red meat, white flour, white sugar, and all sweets from his diet. I truly believe it's helping... he's eating normally, walking, and even taking the dog for walks (that dog is such a chaotic little energy ball that sometimes even a walk is a challenge for me 😁).
I felt the same way while he was in the hospital following all those complications—that he might not even make it out—but well, life turns things around and he's okay 🙂.
My husband finally brought home my father-in-law's latest test results yesterday:
The follow-up X-ray shows satisfactory intrathoracic status with no signs of complications or recurrence of the primary disease. CYFRA 21-1: 3.04 ug/L - result within the reference range. Follow-up in 3-4 months with a new chest X-ray (AP and lateral views), referral for [redacted], and a CYFRA 21-1 tumor marker test.
I forwarded everything to his oncologist to see if we should schedule a follow-up with her specifically, and I also asked if it would be wise to monitor the marker monthly—just in case—so we can catch any upward trend immediately. Her response was:
In accordance with standard medical guidelines, tumor markers are not performed at such frequent intervals. I would recommend a follow-up in 3-4 months, including a CT scan of the chest and abdomen if one hasn't been performed recently.
Fair enough; we’ll get that scheduled since he hasn't had a recent CT since the surgery. So, does this mean that even though the report says he's currently in remission, we should strictly stick to the 3-4 month check-ups, or is it acceptable to go rogue and monitor the marker ourselves more frequently?
The father-in-law results finally arrived, and they’re claiming everything looks fine, suggesting we just wait 3-4 months for the next check-up. Now, what’s actually bothering me is that he’s still coughing. Given that he dealt with pneumonia, is it possible this is just a lingering effect from that? There was absolutely no mention of metastasis in the reports. Is there a specific cough syrup or something else that might offer him some relief? Regarding those results, should I proactively reach out to the oncologist to schedule the regular follow-ups, or should I just sit tight and wait for her to contact us? Also, would it be worth doing a blood count and checking his markers once a month, purely as a preventative measure?
Apologies for the barrage of questions; I just want to make sure I'm making the right moves at the right time.