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

Richard Sanders7 said:Did those PhDs actually specify which exact tumor cells we're dealing with? Because if we’re looking at pancreatic adenocarcinoma, then the standard chemo protocols honestly don't make much sense; however, if it turns out to be small cell carcinoma, then the treatment plan makes perfect sense.

Please, get a second opinion as soon as possible and ask specifically about the histological type of the tumor. If it is indeed pancreatic adenocarcinoma, you should definitely ask about therapy involving Sunitinib.

They just performed a biopsy on three pieces of the gastric mucosa when they suspected stomach cancer, and that was it:

Vial 1: Biopsy 3 x angulus (npl?)
Vial 2: Biopsy 3 x cardia polyp

Mature intestinal metaplasia is noted, but Helicobacter pylori came back negative.

From what I can gather, they aren't entirely certain that the primary issue is pancreatic cancer. Initially, they suspected the pancreas, but after a duodenal ulcer ruptured, they used a gastric mucosal biopsy to rule out stomach cancer, which they took as confirmation that the problem lies with the pancreas. I'm currently at the hospital, and someone mentioned the possibility of seeking a second opinion. The hardest part is that I feel completely lost in all of this—just searching, reading, and wandering through information without knowing if there's anything else left for me to do.

Linda Patel21 said:Dear feralsurfer72, I am truly sorry to hear that the results weren't more encouraging. My own father went through a similar battle with bile duct cancer, which had unfortunately spread to his liver and duodenum—and likely his pancreas as well. We were told the same thing: that chemotherapy just wasn't an option anymore. I ended up seeking a second opinion from a specialist, Dr. Miller, at a top-tier clinic in Boston; he shared that same grim outlook, though he did suggest we might attempt a much milder course of treatment. Sadly, my father's condition declined so rapidly that we never even reached that stage. He was a brilliant oncologist, though I must admit his services come with a rather steep price tag. I am sending all my strength and best wishes to your father as he fights this beast.

Thank you, John Foster38. 😘

cosmiclynx14 said:Hey everyone... how's it going? How are your loved ones doing?

Angela Wright I’ve been going through this old thread, reading everything you wrote about your mom. I had absolutely no idea. I am so incredibly sorry. Honestly, though, I haven't encountered a group of people this brave all in one place before.

Does anyone actually know what mucinous adenocarcinoma means? I’ve got a few specific questions, but every time I try to look it up, Google throws a bunch of contradictory nonsense at me. It's frustrating when you're looking for clarity and just get hit with conflicting info.

Is this the kind of aggressive cancer that spreads like wildfire, or does it take its sweet time? I’m talking about metastasis—does it jump to other organs in a matter of weeks, or is it a slow burn? Also, when you look at the clinical data, how much of an impact does standard therapy actually have on these numbers?

One more question: why isn't radiofrequency ablation ever actually offered to patients at the oncology center? They claim they perform the procedure in their literature, yet when you're actually sitting there, it’s nowhere to be found.

It isn't just the fact that it’s a mucinous adenocarcinoma that dictates the nature and trajectory of the disease; it's also those specific codes buried in the pathology report that signal the grade of malignancy and the actual stage. Those markers are everything. They are the deciding factor in whether a patient is even a candidate for a particular treatment protocol. That might be exactly why they aren't suggesting that specific route for you.
To be honest, I don’t have the most glowing opinion of Memorial Sloan Kettering. Don't get me wrong—you have to hand it to the individual doctors for their sheer dedication and hard work—but you can't ignore how often you hear about cases where things were "professionally" mishandled. If it were my life, I’d always go looking for a second opinion just to make sure what they’re doing is actually right. It feels like they're so bogged down by the bureaucracy of the healthcare system that they end up prioritizing the machine over the patient. They’ve become way too pragmatic for their own good.

feralsurfer72 said:Dad finally got home from the hospital this Thursday.
Dg:
K921 Melanea
Hematemesis (vomiting blood) is a serious medical situation that shouldn't be taken lightly. It’s essentially an internal alarm bell signaling that something is wrong further up the GI tract. Whether it's caused by a perforated ulcer, severe esophageal varices, or even just significant irritation from heavy alcohol use or NSAIDs, you need to take it seriously. If you or someone you know is dealing with this, don't sit around waiting for it to pass—get to an ER immediately.
The sheer audacity of that lizard-brained moron's latest power grab is nothing short of a toxic innovation.
The C787 Meta hepatitis situation is a mess.
Secondary malignant neoplasm of the lung, C780.
Chronic gastritis, unspecified.
Iron deficiency anemia triggered by chronic blood loss.
K317 Gastric and Duodenal Polyps

Bottom line: We have a 66-year-old patient hospitalized for melena; he’d also reported vomiting blood at home. Because of epigastric pain and significant weight loss, he had already started a surgical workup as an outpatient. An abdominal ultrasound showed multiple secondary lesions in the liver, reaching up to 10 cm, suggesting a possible primary liver tumor. There were also changes near the pancreas that could point to enlarged lymph nodes or a primary pancreatic malignancy. A colonoscopy performed three weeks prior was clear of tumors but did show signs of colitis. Outpatient CT imaging revealed diffuse liver metastases and a large mass about 8.5 cm in diameter. While there is suspicion of a duodenal tumor, we can't rule out a malignancy extending from the pancreas. Peritoneal dissemination is also present. Currently, the patient is eupneic, afebrile, and normotensive. Digital rectal exam confirms melena, and labs show anemia, elevated inflammatory markers, and high GGT and ALP levels. Tumor markers—specifically CEA, CA 19-9, NSE, and CYFRA 21-1—are all elevated.
Repeat endoscopy performed: Chronic gastritis with regional infiltration of the angularis, a cardia polyp, and pathology confirming chronic gastritis along with a hyperplastic gastric polyp. No malignant cells were detected. Anemia was successfully managed with three doses of concentrated iron via IV alongside a proton pump inhibitor; symptomatic abdominal pain has gradually subsided, and the most recent stool test was negative for occult blood. Regarding the papular skin lesions on the back, I saw a dermatologist who recommended a course of treatment. A follow-up chest CT was also conducted: aside from a tiny nodular lesion near the caudal portion of the hilum in the lower lobe—subcentimeter in size and likely secondary in nature—the rest of the findings are unremarkable. The patient was seen by an oncologist who isn't recommending active chemo—just symptomatic management for now.

DISCHARGE MEDS: Controloc 40 mg, Ramzid, Spamex PRN, Reglan PRN, Tramundin, Transtec 35 mcg, Megostat 10 ml, Prosure 2x1 pack. A pancreatic MRI is scheduled for April 22nd.

The oncologist didn't even actually lay eyes on him; he just went through the paperwork. They suggested we seek a second opinion, so that's exactly what I'm going to do. I'm looking for a private specialist right now and hope to have everything sorted by next week. Honestly, I'm flying blind here—if anyone has advice on how this whole process works, please, let me know...
Dad is up and walking a bit, eating everything in sight, and taking visitors... He was even humming a tune yesterday.

Tumor markers are: CA 19-9 117, CEA 6.7, CYFRA 21-1 30.2

Where was your dad being treated? My apologies to everyone, but there are so many of you here that I can't keep track of who's who or whose situation is what.

In any case, the standard procedure is to request the tissue/puncture samples (the actual slides) from the hospital's pathology department on a release form, then take those to a different hospital with its own pathology lab for a repeat biopsy. You really want to aim for a major university hospital like Mayo Clinic or Johns Hopkins, because local community hospitals usually just send their samples to the big university labs anyway; if you aren't careful, you'll end up circling back to the exact same lab that did the first analysis. I believe you can even get a referral from your primary doctor for this purpose. All you need to do at the original pathology lab is submit a formal written request stating you are withdrawing the samples specifically for a second opinion and a repeat biopsy.
I know the pathologists at Mass General are quite good. If you don't find what you need there, you might look further afield—maybe somewhere in Europe, like Germany, for instance. Most of this can be coordinated via email and sent by mail; there’s no real need to travel.

Regarding the oncologist himself, Dr. Smith is a private practitioner who does solid work, but you should still try to get into a different hospital system if possible. Having a fresh biopsy report will make it much easier for them to accept him, since hospitals are often hesitant to take on patients diagnosed elsewhere due to budget constraints and insurance bureaucracy.

Angela Wright said:Basically, the standard procedure is to request a release of the tissue or puncture samples—specifically the slides themselves—from the hospital's pathology department. From there, you request a second opinion via a new pathology review at a different hospital. It’s important to choose a major university medical center or a large teaching hospital; smaller community hospitals often just send their samples to the local big hospital anyway, which means you might accidentally end up back at the exact same pathology lab that did the first review. I believe you can even get a referral from your primary care doctor for this purpose. You just need to submit a formal request to the pathology lab where the sample was originally taken, stating that you want the slides released specifically for a second opinion and a repeat pathology study.
I know the pathologists over at Johns Hopkins have some really solid experts. If you don't find what you're looking for there, you could always look for an opinion further afield—maybe somewhere in Europe or even a specialized clinic out West. Most of this can be coordinated through email and handled via mail, so there's really no need to travel.

Just a small follow-up on that. For a pathology review to actually work, those slides need to contain tumor tissue. Based on what I understand, the initial biopsy they performed didn't actually capture any malignant cells. Because of that, a new biopsy will likely be necessary to get the right material. At the end of the day, the pathologist is the one who provides the final diagnosis, every single time.

Angela Wright said:Wait, where was her father being treated? My apologies to everyone, but there are just so many of you here that I honestly can't keep track of who is related to whom or what specific illness they're dealing with.

In any case, the standard procedure involves requesting the tissue or puncture samples—specifically those slides—from the hospital's pathology department via a release form, then seeking a repeat biopsy analysis at a different major medical center. You really need to aim for a large university hospital system, because local community hospitals usually just send their specimens to the nearest big teaching hospital anyway, which means you might end up circling right back to the exact same pathology lab that did the first one. I believe you might even be able to get a referral from the primary care physician for this purpose. As for the department holding the original sample, all you need to do is submit a formal written request stating that the samples are being released specifically for a second opinion and a repeat biopsy.
I know Mayo Clinic has some excellent pathologists. If things don't pan out there, you should look for an outside opinion, perhaps somewhere like Johns Hopkins or even sending it abroad. Most of this can be coordinated through email and sent by mail; there’s absolutely no need to travel.

Regarding the oncologist's opinion, Dr. Miller is a private practitioner who does quite good work, but I would still try to connect with a different hospital system if possible. Once you have a repeated biopsy in hand, he’ll find it much easier to accept the patient, since hospitals are often hesitant to take on cases diagnosed elsewhere—mostly due to budget constraints and insurance complexities.

We are in a small town in the Midwest, and the oncologist travels from the regional medical center to cover this entire area. So, we are essentially looking at that same regional hub again. That’s actually what worries me—if we go to the regional center, we might just end up back in the same loop. That’s why I considered seeing a private specialist, and not because we have money to burn. So far, they've only performed a gastric mucosal biopsy; there hasn't been a pancreatic biopsy yet.
My mother received a referral from her family doctor for oncology and radiation consultations at the regional medical center. But, it turns out, it's the exact same oncologist working there.
This is my first time navigating both this kind of illness and the American healthcare system, and I'm just trying to wrap my head around what the next steps should be... I am doing my best, but...

Looking through the paperwork, the oncologist wrote:
Oncology treatment is not indicated for this patient. Proceed with symptomatic management, followed by home health services. In the event of pain, use analgesics and opioids. (Some parts are truly illegible to me.)
Is it actually possible to make all those assessments—to "decide"—without a biopsy?

Which type of specialist is authorized to request a pancreatic biopsy?

feralsurfer72 said:We’re in a smaller town, and the oncologist comes in from the major university hospital in St. Louis, covering this whole region. So, we're looking at St. Louis again. Honestly, it worries me—if we head there, we might just end up circling back to the exact same dead end. That’s why I was thinking about going private; it isn't even about having the extra cash. This doctor only did a gastric mucosa biopsy; he hasn't done a pancreatic biopsy.
My mom got a referral from her primary care doctor for oncology and radiation oncology at the University Hospital in St. Louis—just for an exam and an opinion. But it's the same oncologist working there.
This is my first time dealing with a disease like this, and honestly, the whole American medical system is a maze. I'm trying to wrap my head around what the next steps should be... I'm trying, but man...

Looking through the paperwork, the oncologist wrote:
Patient does not indicate oncological treatment. Proceed with symptomatic management via hospice/home health services. Use analgesics and opioids if pain occurs. (Some parts are actually unreadable to me.)
Is it even possible to assess everything—to "decide"—without a biopsy?

Which specialist can actually order a pancreatic biopsy?

I’d personally suggest heading to Boston or maybe New York—I know that’s a trek for you, but I really think you’ll get better care there.
Plus, if you know anyone who has a connection to a doctor in a major hub who could point you in the right direction or "nudge" things along, grab it. You can technically request a second opinion at any hospital, but the wait times are brutal. I don't know exactly how long, but people are waiting forever, and your situation isn't something you can just sit around for.
The absolute priority here should be getting that biopsy done—whether it's checking for metastases in the liver or the pancreas, it doesn't matter; you need to identify the specific tumor type.

For context, with my dad, his CA 19-9 and CYFRA markers were elevated, so they told us at one point that it was primary pancreatic cancer even though the scans showed nothing on the pancreas itself. Then a biopsy finally proved it was small cell.
My dad has metastases in his liver and bones; he has lung cancer, yet every single CT scan so far shows the lungs haven't changed. No lymph nodes are enlarged either. But the disease is widespread.

We got the CT results this past Friday, and they actually showed significant regression in the liver metastases, though the bone ones are staying exactly where they were—no change in the bones.

I'm crossing my fingers that you finally find someone willing to perform the biopsy and actually map out a treatment plan. I'm not sure if you saw my post from a few days ago—I reached out because your dad's story is almost identical to mine. My dad's first oncologist refused to treat him and only prescribed symptomatic care, and even then, he couldn't prescribe much because without the pathology report, he couldn't authorize any chemo.

Once we finally got my dad to a specialist in a major city and they performed the biopsy, everything finally started moving.

Again, I'm pulling for you. Don't give up!

feralsurfer72 said:In my town, the oncologist travels in from the major regional medical center to cover the whole area. So, we’re basically stuck heading back to that same big hospital again. It honestly worries me because if we go there, we might just end up circling the same drain. That’s exactly why I was thinking about looking into private care—not because money isn't an issue, but for clarity. He only performed a gastric mucosa biopsy; he hasn't done a pancreatic biopsy yet.
My mom got a referral from her primary care doctor for oncology and radiation at the regional medical center for an exam and opinion. But guess what? It's the exact same oncologist working there.
This is my first time dealing with a disease like this, and my first time navigating this entire healthcare system. I'm trying to piece together the next steps, but... I'm struggling.

I'm looking over the paperwork, and the oncologist wrote:
"Oncology tumor not indicated for patient. Continue symptomatic treatment via [unclear] and home health services. Use analgesics and opioids for pain management." (Some parts are honestly illegible.)
Is it actually possible to make all those calls—to "decide" everything—without a biopsy?

Which specialist is actually qualified to request a pancreatic biopsy?

Good luck trying to drag your dad all the way to a major metro hospital like Mayo Clinic or Johns Hopkins to get things done strictly by the book. Look, even Rachel Wood27 is suggesting it. Try calling them first to coordinate; if they won't budge, then look into private options or make the trek to a big city. At the very least, get them to redo that one specific test.
From what she's saying about home health and the family doctor... forget it. They clearly just didn't want to deal with him. This is going to have to be handled in a major city somehow.

Honestly, I wouldn't be surprised if we're looking at some rare tumor, like a sarcoma, that they simply aren't equipped to identify.

Rachel Wood27 said:I would suggest heading to a major medical center like Mayo Clinic or Johns Hopkins; I know it’s quite a trek for you, but honestly, that’s likely where you’ll find the best answers.
It might also help if you have an acquaintance who knows a specialist in a big city like Chicago or Boston who can give you a nudge or expedite things—you can always request a second opinion at any hospital, but the wait times are endless, and in your situation, waiting isn't really an option.
The absolute priority right now should be getting a biopsy (whether it's liver metastases or pancreatic, it doesn't matter) just to identify the specific type of tumor we are dealing with.

To give you some context, my father had elevated Ca 19-9 and CYFRA markers, which led doctors to believe the primary issue was his pancreas even though scans showed nothing there, until a biopsy finally revealed it was actually small cell carcinoma.
My dad has lung cancer with metastases in his liver and bones, yet every CT scan shows his lungs haven't changed much. No lymph nodes are enlarged either, despite how widespread the disease actually is.

We just got his CT results this past Friday, and they showed significant regression in the liver metastases, while the bone metastases remain unchanged.

I am keeping my fingers crossed that you finally connect with someone who can perform the biopsy and map out a treatment plan; I'm not sure if you saw my previous post, but I reached out because your father's story mirrors mine so closely—his first oncologist actually refused to treat him and only suggested symptomatic care, though he couldn't even prescribe anything meaningful without proper pathology results.

Everything finally started moving forward once we took my dad to a major metropolitan hospital and got that biopsy done.

Again, I'm rooting for you—don't lose hope!

Rachel Wood27, please forgive me, I completely missed your last post. Thank you so much!

Why don't you try getting your dad to a major hub like New York or Houston so everything can be handled strictly by the book? Even Rachel Wood27 is suggesting it. Try calling ahead to arrange things first, and if that fails, look into private specialists; maybe make the trip to a big city. At least they can redo that one pathology test.
She mentioned home health visits and family practitioners... forget about it. They simply didn't want the headache of dealing with him. This needs to be handled in a major medical center somehow.

Honestly, I wouldn't be surprised if we're looking at a rare tumor like a sarcoma, which they often struggle to identify accurately.

Angela Wright, I just spoke with a private oncologist-radiologist over in St. Louis. We agreed that I'll bring all the medical records to see him this Thursday. If all goes well, he'll review everything, explain the situation, tell me what our next steps are, and write the referral for the biopsy.

feralsurfer72 said:Rachel Wood27, sorry about that, I totally missed your last post. Thanks a ton!

Angela Wright, I just got off the phone with a private oncology radiologist over in Chicago. We set an appointment for Thursday, and I’m bringing every single scrap of medical paperwork with me. At the very least, he’ll run through everything, walk me through what's actually happening, and write the referral for the biopsy.

Let's hope things finally start moving in a better direction. Personally, I think they really ought to run another pHD analysis.

feralsurfer72, I know it might not bring much comfort right now, but honestly, my dad's markers are sitting at over 500, and his CA 19-9 is north of 300...
(I'm actually getting chills just typing this)

Rachel Wood27, did they get the CT scan results back yet?

Angela Wright, thanks again for the reply. We actually had a direct run-in with some incompetence at the local medical center ourselves, but this time we came prepared. We went in armed with questions from the jump, and we actually trust our doctor. My only issue is that I can't badger him too often—I'm terrified of pushing him too far and triggering a backlash. For now, we’re satisfied with how they’re treating my dad and we know he’s getting the best care possible, though of course, I'm constantly coming up with more questions...

cosmiclynx14 said:Rachel Wood27, did you get the CT results back yet?

Yeah, we did—the liver metastases are regressing, and the bones look stable. Most importantly, the report shows those liver spots have shrunk significantly compared to the last scan.

We’re heading to see the oncologist this Wednesday for a follow-up.

One thing though—his creatinine spiked for the first time. It’s always been around 85, but now it’s hit 116 (and the upper limit is 125). I'm a little worried about it, honestly. Does anyone know how to help kidney function besides just cranking up the fluids? My dad drinks plenty of water—he doesn't have any issues with urination or fluid retention, he actually goes quite often, but that jump in creatinine still has me on edge.
I told myself I'd start him on some dandelion root tea, especially while he's going through chemo—can't hurt, right?—but I'll run it by his doctor first.

Anyway, the liver metastases are continuing to recede, and I'm really hoping they finish the job. Despite the diagnosis, I’m staying optimistic!

Regrettably, we can debate these matters endlessly, but the emergence of metastasis signifies the beginning of the end. Seven years after my wife underwent a left mastectomy, followed by grueling rounds of chemotherapy, radiation, hormone therapy, and constant medical monitoring... a 3x2x1 cm metastasis appeared in her brain. The neurosurgery to remove it was successful and proceeded without complication. However, when her oncologist—the same physician who has guided her since day one—delivered the news, my wife was utterly devastated; she simply could not process it. Following that diagnosis, she was immediately referred for an urgent PET/CT scan, which revealed yet another metastasis at the site of the initial surgery. It has involved part of the pectoral muscle, the lymph nodes that were originally affected, and even a portion of the rib.
And what follows? One can only sit and watch the images unfold. She is currently undergoing radiation for the brain surgery, and it is highly probable they will prescribe chemotherapy as well. After that, she faces the surgical removal of this second metastasis, followed by yet more treatments. At this stage, the haunting question remains: when and where will the third or fourth appear?

I’m glad to hear that, and please, don't lose hope. Honestly, I feel just as lost as anyone else sometimes, but I managed to dig up some optimism and I am sticking to it... anyway, things on your end seem to be heading in the right direction despite those initial hurdles. 🙂I just realized you posted those lab results in the thread above.. sorry about that..

Hey, has anyone else ever realized that some of our parents probably know each other from hanging out in hospital waiting rooms!?

redfox81 You're certainly providing quite the "support" for her..

Hey everyone,

Figured I’d jump in here—maybe this will help someone else feel less alone. 😢

So, about two years ago, my grandma was showering and noticed
this mole had started bleeding.
Since it was right by her left shoulder blade, she couldn't really get a good look at it herself, so my grandpa had to check it out for her.
To the naked eye, it looked pretty raised with clear edges, but honestly, it looked more like some weird fluid-filled blister than an actual mole.
Her primary doctor took one look, realized something was definitely off, and sent her straight to a dermatologist.
The specialist told her it was just a viral wart and suggested freezing it off.
After a few sessions, nothing changed—except the whole thing turned black and the edges got red. At that point, the derm realized they might have messed up big time, grabbed a tissue sample, and sent it off for testing. And that's when the nightmare truly began...😢

The biopsy came back positive for melanoma. The dermatologist basically panicked because she knew she’d botched the initial diagnosis, so she started calling every doctor she knew over at the Mayo Clinic.
Surgery was scheduled within three days because it was an absolute emergency.
They ended up cutting out the melanoma along with a chunk of surrounding tissue—we're talking a 30cm wound—and they removed the lymph nodes under her arm too.
They did a biopsy on those lymph nodes, and thankfully, there were no metastases found locally, but then they spotted something on her adrenal gland. They called my dad and dropped the bombshell that it *had* spread everywhere. Just a great way to start the day, right? -/\
We were all a total wreck, just crying... it was devastating.
My dad and aunt were called in for a talk with the doctor, who—to cut a long story short—claimed Grandma was "stable" enough to go home for now. Next checkup in three months.😕

Fast forward three months, Grandma goes in for her follow-up and everything seems fine on the surface. 😍
But there’s this one massive issue: the pain under her arm where they removed the lymph nodes won't go away. They told us she needs physical therapy. So, we go through a mountain of PT, massages, meds... and absolutely nothing works.
She’s in constant agony. We even wondered if it was psychosomatic for a second... mostly because Grandma has a really hard time just accepting that she’s sick.
We’ve paid for private PT, endless massages, and we even try doing exercises with her at home, but there's zero progress. We aren't giving her much besides some Tylenol with Codeine, and the pain is just getting harder for her to bear. It’s brutal for us too because we’ve tried everything under the sun and we're at a total loss.
If anyone has dealt with something similar, please, tell me how to stop this pain.
Because the only answer we get from the doctors is a polite, diplomatic "screw you" (sorry for the language, but it's true).
Six months pass like that, and at the next checkup, they discover two new spots right where the first one used to be.
She has to go through another surgery, and we’re stuck waiting on biopsy results.
The surgeon concluded he should have taken more tissue out originally (which left us all in shock), but since they saw some suspicious activity in a lymph node near her lung, they're sending her over to Johns Hopkins and delaying the third surgery.
More stress for everyone, but thank God the results have been okay so far. (I won't even get into the mess we dealt with at that hospital, or we'll be here all night.)
My dad keeps calling the doctor at the clinic trying to push for that third surgery, since the surgeon basically admitted he missed something... yeah.
But nope, they just want Grandma to go home and wait another three months for a checkup. (And I say three months, but in reality, these gaps always end up being four or five months.)
Finally, Grandma gets her follow-up, and sure enough, they find more spots—because, surprise, the surgeon didn't take enough the first time. Since the surgeon isn't available, the doctor is just going to cut it out right there in the office.😕
So, she’s being sliced open for the third time today. On top of that, they mentioned it might have spread to her neck nodes and handed her this thick booklet about starting radiation—something nobody had even bothered to mention until now. Instead of actually treating her properly, they just keep cutting her open.😕
Nobody’s even mentioning—or reacting to—this damn pain I've been dealing with for a year and a half right where they pulled my lymph nodes.
Every time we bring it up, the doctor just gets incredibly frustrated with us—like we're idiots who can't grasp the obvious fact that they cut out a chunk of tissue and, duh, it's gonna hurt. But why is it just me? We've met so many people battling this exact same thing, yet nobody else seems to be feeling this specific ache.

Honestly, we're all just hitting our breaking point here. 😢

redfox81 said:Unfortunately, we can talk all we want, but once metastases show up, you’re essentially looking at the beginning of the end. Seven years after my wife had her left breast removed—and survived aggressive chemo, radiation, hormone therapy, and endless checkups—she suddenly developed a 3x2x1 cm metastasis in her brain. They performed neurosurgery to remove it, and everything went smoothly from a surgical standpoint. But when her oncologist, who has been with her since day one, broke the news, my wife was absolutely devastated; she just couldn't wrap her head around it. Immediately after, she was sent for an emergency PET/CT scan, which revealed another metastasis right near the site of the original surgery. It involves part of the pectoral muscle, some lymph nodes that were already compromised, and a section of a rib.
So what now? You might as well just take pictures. Right now, she’s undergoing radiation for the brain surgery, and they might start chemotherapy too. After that, they have to go back in to remove this second mass, followed by more treatments. The real question is when and where the third or fourth one will pop up...

Redfox, forgive my bluntness, but the only thing she needs to "take pictures" of is the total lack of support coming from you.

It seems like over these last seven years, you haven't seen fit to actually educate yourself about her illness or even the basic nature of malignant diseases and breast cancer in general. 😳
The reality is that remission doesn't mean the disease won't return.
I don't know the specifics of her medical history or how closely she was monitored, if she was at all, but claiming the battle is lost and it's the "beginning of the end" just because the cancer returned with metastases is absolute nonsense. Sure, having metastases is a heavy blow, but thank God modern American medicine has made strides in treating them. However, medical treatment needs to be paired with a positive environment—not one filled with frustration, paranoia, and despair. A patient needs someone by their side who acts as a rock, someone with actual steel in their spine. Sometimes, for women facing breast cancer, the diagnosis itself feels like the smallest hurdle they have to clear. I sincerely hope that for your wife, the real problem hasn't "metastasized" into this kind of attitude.
Start acting like a man and do some meaningful research on Google, instead of just cherry-picking information that fits your own narrative.

Nicole Richardson51 said:Respectfully,
...

Man, oh man... there’s a lot of noise here, just pure guesswork and total incompetence.

My grandmother dealt with lymphedema caused by removed lymph nodes, so let’s get one thing straight: these issues are very real. Women who have their axillary nodes removed following breast cancer treatment deal with this constantly.
In my opinion, two specific failures led to your grandmother ending up in this state:
1. A dermatologist botched the melanoma diagnosis by missing something that should have been obvious to anyone with half a brain—at least based on how you described it. That delay likely allowed the malignant cells to spread into the surrounding tissue.

2. Massaging the painful area, which likely did the exact same damage. It’s a tragedy that nobody bothered to tell you that you absolutely cannot massage a site where malignancy is still present.
Pain can only be managed through actual pain management therapy, like using patches such as Durogesic. You have to coordinate with an oncologist and an anesthesiologist to fine-tune the dosage and create a cocktail of other painkillers to use alongside the patch. Otherwise, you look at lymphatic drainage and bandaging where applicable —and those procedures must be performed by specialists specifically licensed to work with oncology patients. So, feel free to give a polite "thank you" to the so-called "professionals" who were massaging her. They should have known better, but apparently, cutting corners was easier. In the entire US, I think there might only be a handful of people actually qualified to handle this.
The harsh reality is that melanoma is the kind of disease where there isn't a magic chemo bullet; it's about surgical removal whenever possible.
It's obvious you're running on empty right now, but you're going to have to find a way to dig deep, stay composed, and keep being the support system she needs.

Thanks for the reply.

We actually went to the pain management clinic—they gave her some flyers, though I'm not sure if they’re the same ones you mentioned—and some pills that absolutely wrecked her stomach.
After a month of zero progress, the doctor just gave up on those and switched her to something else.

I totally get why we didn't know—it's because the doctor flat-out refuses to answer the question. She just keeps looping back, saying it's "post-op complications," but won't say a damn thing about how to actually deal with it.
Honestly, the pain is doing more damage to my grandma than the melanoma itself.
She can't sleep or even function because of it.

Personally, I haven't met a single woman who dealt with this kind of thing.
And I'm talking about women who were right there in the hospital room with her going through the exact same stuff.

Oh, and she also complains that it feels like there's a literal thorn stuck in there??😕
And whenever she moves her arm, it's like that sensation shifts around inside too??😕
I really don't know how to explain it better—she can't even put her finger on the sensation herself.

I can certainly empathize with your indignation, though I must point out that not a single physician had even broached the possibility of a full recovery until now. Every specialist we consulted focused exclusively on survival windows. It started with Dr. Miller immediately following her initial surgery, and he was quite blunt: he gave her five years, maybe six at most.
Once she was transferred to the oncology department, Dr. Sterling remarked that it is fundamentally human to hold onto hope. At that stage, alongside her standard chemotherapy regimen, we were advised to purchase Taxol as a supplemental treatment. For reasons beyond our comprehension, the hospital refused to provide it via prescription. One might suspect it was due to some petty political maneuvering or institutional gatekeeping prevalent during that era. Consequently, we proceeded with twelve doses of Taxol, at 130 ml per $1233 dose, to keep moving forward.
Following her most recent brain surgery, the surgeon, Dr. Harrison, delivered the news with heavy solemnity: "I am truly sorry, but the tumor is malignant and quite substantial. We have performed our part to the absolute best of our ability, and now it rests with the oncologists to see if there is anything more they can achieve."
There is nothing optimistic about this situation, frankly. She is fully aware of the reality; the doctors haven't withheld a single detail from her, and she possesses the unwavering support of our entire family and extended circle. However, one cannot ignore the grim reality that several young individuals in her immediate lineage have succumbed to various cancers.

redfox81 said:I get why you’re frustrated, but honestly, no doctor has ever mentioned a cure to us. It’s always been about survival rates. Right after her first surgery, Dr. Miller told us straight up: she’s got five years, maybe six at most.
Once she moved over to oncology, Dr. Smith told us it’s human nature to hold onto hope. Along with her standard chemo, they suggested we BUY Taxol as an add-on. For some reason, the hospital wouldn't cover it under insurance. Probably because they were too busy playing politics with whoever was running things back then. So, we’re doing 12 doses of Taxol, 130 ml $1233 per dose, and just pushing forward.
After her latest brain surgery, the surgeon, Dr. Anderson, basically told us, "I'm sorry, it's malignant and quite large. We did everything we could on our end; now it's up to oncology to see if there's anything left to do."
There isn't much room for optimism here. She knows the deal—the doctors haven't kept her in the dark—and she has the full support of the family and everyone else. But looking at her family tree, there's a heavy history of cancer among the younger generation.

Listen, redfox81, once you're hit with a malignant diagnosis, every single day becomes a gift. Cancer is a chronic battle. We all have malignant cells inside us that our immune systems keep in check. Why it hits one person and misses another—and what the specific triggers are—is something we might figure out one day, but right now, the goal of treatment is simply extending the quality of life. For some, remission lasts a few months; for others, it's five years; and some people just pass away from heart failure at 80. Unfortunately, nobody can predict or guarantee any of it. There are statistics and clinical indicators, but nothing is a sure thing.

Regarding Taxol, I actually posted here recently about the specific reasons why certain drugs aren't prescribed when they absolutely should be.

And please, stop looking for genuine, necessary optimism in the wrong places. Doctors and medical professionals definitely aren't it. Optimism, strength, and hope have to come from within ourselves. Try to internalize that and filter out the noise that disturbs your peace—and especially your wife's peace. She made it seven years, blowing past that "optimistic" five-year estimate the doctor gave her. So who's to say she won't grab the bull by the horns and finish this fight again? Don't weigh yourselves down with other people's stories or comparing what they can do versus what you can. Everyone is fighting their own unique battle. Reach out to the "All for Her" foundation; they have massive experience with this stuff. They can point you toward some "shortcuts" that could really help you out.

Nicole Richardson51 said:Thanks for getting back to me.

We actually went to the pain management center, where they gave her some plasters—though I’m not sure if they’re the same ones you mentioned—and some tablets that absolutely wrecked her stomach.
After a month of zero progress, the doctor just gave up on those and switched her over to a different prescription.

I agree that we were kept in the dark, mostly because the doctor refuses to give us a straight answer. She just keeps looping back, insisting this is all just a consequence of the surgery, without offering any actual guidance on how to manage it.
To be honest, the pain itself is tormenting my grandmother more than the melanoma ever did.
She can't sleep properly or function at all because of it.

In my experience, I haven't met a single woman who dealt with these specific issues.
And I'm talking about women who were right there in the hospital room with her, going through the exact same thing or something very similar.

Oh, and one more thing—she keeps complaining about feeling like there's a sharp thorn stuck in that spot.😕
And whatever way she moves her arm, that sensation shifts around inside her too.😕
I honestly don't know how to describe it better, since she can't quite put the feeling into words herself either.

On top of the lymphedema, she's dealing with neuropathic pain too... You really should reach out to Dr. Miller at the outpatient pain clinic at Mount Sinai. He has extensive experience handling these exact types of cases. He can tailor a specialized therapy plan to cover that entire spectrum of pain she's experiencing; you just have to tackle it head-on with someone who knows what they're doing.
Phone: 212-376-2000