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

placidcobra7 said:I’m heading out tomorrow to talk to the doctor. Mom found out today that it’s likely a primary liver tumor, and they’re basically playing it by ear regarding next steps since things have progressed quite a bit. They were planning on a colonoscopy and endoscopy, but he’s just too weak right now. He’s always had heart issues, and right now they’re trying to stabilize him with transfusions because he’s likely bleeding from the tumor. That’s just my gut feeling, though—honestly, given his age, it feels like they’ve already written him off. I don't know why they stopped mentioning the MRI. He isn't in pain, but he went from being an independent man to needing diapers within two days of being hospitalized, which is a lot for him to swallow. Visits are banned due to the flu, and I’m worried his mental state is going to kill him physically before the tumor does.
I’m doing some quick Googling and saw that sometimes drugs can shrink a tumor down to a size where surgery becomes an option. In that light, everyone seems to be raving about the team at Mercury. Who should we go to at the Mayo Clinic?
Who actually handles the referrals for further hospital treatment? Is it the people where he is currently staying, or his primary care physician? There are so many questions, and today they practically brushed Mom off when she tried to get a consultation. She was exhausted, so they finally showed her some mercy, but even then, it wasn't the doctor actually managing Dad.

A hospital specialist is the one who refers a patient to oncology. Liver surgery is on the table if her tissue isn't too scarred and if the tumor is localized in one spot.
Even a metastasis on the spine could potentially be treated with radiation.
Mercury has a top-tier transplant team, which is why they get such high marks.
The Mayo Clinic is a major medical center with the best resources available, so in that sense, it’s a solid place for oncological treatment.

The military specialist is giving the oncologist the rundown. A liver surgery is on the table, provided the scarring isn't too widespread and the tumor is sitting in one specific spot.
Even that spinal metastasis could be handled with radiation therapy.
Mercury has an incredible transplant team, which is why they get all the praise.
The Mayo Clinic is a major medical center with top-tier resources, so in that regard, it’s a solid choice for oncology treatment.

Thanks for the info. Hopefully, I'll be a bit sharper tomorrow.

They’re planning to discharge Dad because they've basically given up on him. Liver necrosis...
We started looking into how to borrow a hospital bed, trying to figure out what kind of coverage we can get through Medicare. Any info or shared experiences would be huge right now—even just knowing if this is actually doable, since Mom and Dad don't live in a major city. She’s dead set on not letting him die somewhere else, but I’m honestly not sure if it’s even possible to care for someone alone when he’s currently stuck in the hospital on IV fluids and transfusions. How do you even handle feeding someone in that state?...
The doctor wouldn't even give us a straight answer on how much time he has left. Honestly, I'm just stunned by how completely devoid of empathy everyone is here... from the nurses all the way up to the doctors.

We find ourselves in a very similar situation. My Dad's primary lung cancer has unfortunately spread to his brain and his bones. He’s reached a point where he can't do anything for himself anymore, and now that pneumonia has set in too... To make matters worse, they actually sent him back home from the ER to face the end...
We feel completely stuck right now. We're unable to provide the level of care he needs, yet the hospital won't take him back. If anyone has any advice or guidance, please, we really need help. There isn't a single hospice facility available here in Zadar County...

placidcobra7 said:They are planning to discharge Dad as a hopeless case. Liver necrosis...
We’ve started looking into renting a hospital bed, and we're trying to gather info on what benefits we can claim through Medicare. Any information or shared experience would be incredibly helpful—even just an opinion on whether this is even feasible, given that Mom and Dad don't live in a major metropolitan area. She is determined not to let him die somewhere else, but I’m honestly not sure if it’s possible to provide full-time care alone for someone currently requiring IV fluids and transfusions. How do you even manage feeding someone in that state?
The doctor wouldn't even give us a prognosis on how much time is left. Honestly, I am just stunned by how completely devoid of empathy everyone seems to be, from the nurses down to the doctors.

You might want to reach out to them:
http://www.hospice-usa.org/

Also, ask your primary care physician about home health nursing; you have a right to request that, and your doctor will know the protocol.

Is Dad able to swallow anything at all on his own? Usually, oncology patients are prescribed Prosure, a nutritional supplement designed to be taken through a straw. Your doctor might prescribe this, or you may have to cover the cost yourselves.
I'm not sure if Dad is mobile, but things like adult diapers and other supplies should also be requested through your GP—they can issue the necessary vouchers.

Regarding what you said about the lack of empathy, I truly understand where you're coming from. They sent my Dad home to pass away, too. He has a brain tumor and is now non-verbal and immobile; from day one, they had basically written him off.

Unfortunately, my mother is disabled, and since I’m still a student living in a rental, we had to place him in an assisted living facility. If you have any chance of finding a reputable facility nearby, please consider it. Caring for a patient in that condition is an immense burden.
Our family judged us heavily because people tend to view these facilities as "places to go to die," and my mother is being criticized simply because she doesn't want to shoulder the entire burden of caring for her husband.

"Disgusting" doesn't even begin to cover it; there aren't enough words in the English language to describe how much it sickens me.

Watching my father go through this illness has forced me to grow up fast. It’s taught me everything there is to know about the cruelty of life; I’ve met the absolute worst kinds of people, but also some of the most wonderful.
In just two months, he went from being a perfectly healthy, cheerful, and active man to a silent, immobile skeleton.

Sending you so much strength. Please keep us posted.

Mark Ruiz4 said:We are dealing with a very similar situation here. My Dad's primary lung cancer has metastasized to his brain and bones. He can't manage anything on his own anymore, and now he's been diagnosed with pneumonia. To make matters worse, they sent him home from the ER just to die.
We feel completely trapped—we can't provide the level of care he needs, yet the hospitals won't take him. If anyone has any advice, please help. There isn't a single hospice facility in Zadar County.

After the Mayo Clinic released my Dad, leaving us totally caught off guard, we stumbled upon this hospital in Ogulin that actually has a palliative care unit.

Eventually, we moved him to a private care facility in Washington, D.C., but honestly, that was mostly because we didn't have a car and it was just easier logistically.

I’d suggest reaching out to them and explaining your circumstances. I realize it's quite a drive, but if you aren't in a position to provide full-time care at home and don't have the budget for high-end private facilities, this hospital is truly excellent.
Most private nursing homes are frankly terrible; they neglect their patients—I've seen it with my own eyes, and I've heard countless stories from others.
In my Dad's case, the hospital in Ogulin gave him a private suite. He was never neglected, never hungry, never thirsty, and never left unattended.

Grace Ross20 said:you can reach out to them


Just ask your primary care doctor about getting a home health nurse... you have that right. Your doctor will know exactly what needs to happen.

Can Dad swallow anything on his own? Usually, oncology patients are prescribed Prosure—it’s a nutritional supplement you drink through a straw. A doctor can prescribe it, otherwise, you'll be paying out of pocket.
I don't know if Dad is mobile, but things like adult diapers and all that... ask your GP for those too. They can write you the necessary paperwork.

Just saying this for empathy, because I get it. They sent my Dad home to die, too. He has a brain tumor and now he's just silent and immobile... from day one, they basically wrote him off.

Sadly, my mom is disabled, and since I'm still a student living in a rental, we had to put him in a care facility. If you have any chance of finding a good facility nearby, really think about it. Caring for someone in that state... it isn't easy.
Our family judged us so hard because people look at nursing homes as "places to go die," and now they're judging my mom because she doesn't want to be the sole caregiver for her husband.

It's hard to even describe how much that disgusts me. There aren't enough words in the dictionary...

Dealing with my father's illness is what made me grow up. I learned everything there is to know about how cruel life can be. I met the absolute worst kinds of people... and the most wonderful ones, too.
From being perfectly healthy, cheerful, and active, he turned into a silent, immobile skeleton in just two months.

Sending you so much strength. Please, keep writing to us.

Thank you for everything. Dad passed away on Thursday. Once the shock and the grief subside, I'm going to start digging into what actually happened at the hospital. It’s unbelievable to me... how a man who was walking and functioning normally went from that to being immobile and on a feeding tube in just eight days. People were dropping like flies on that ward, and the registrar told me they couldn't even keep up with the death certificates. It's horrific.

Mark Ruiz4, I'm sending you all the strength and courage in the world.

I'm so sorry. My Dad is doing really poorly; he's supposed to head into ST tomorrow for his third round of immunotherapy, but he can barely even walk. He was coughing up blood today.

Hey there,

I'm just dropping my post from the "looking for a doctor..." thread here too, so if you guys have any leads, please let me know. 🙂

Basically, I'm looking for a solid place to get a private abdominal and pelvic ultrasound done. I really need a recommendation for a doctor who’s actually going to take their time and give me a thorough exam—that's exactly why I want to avoid the big hospitals, because they usually try to rush you out the door in five minutes flat.
I'm an oncology patient (gynecological cancer), and I've already been through the wringer with radical surgery (they removed all the gyno organs and surrounding tissue, plus the lymph nodes), radiation, and chemo. This is going to be my very first ultrasound since finishing treatment, so it would be huge if I could find a doctor with actual oncology experience...

placidcobra7 said:Thank you for everything. My Dad passed away on Thursday. Once I get past this initial shock and grief, I’m going to start looking into what actually happened at the hospital. It’s honestly mind-blowing—one minute he was walking around on his own and functioning just fine, and within eight days, he's completely immobile and hooked up to a feeding tube. People were dropping like flies in that ward, and the records office told me they couldn't even keep up with processing all the death certificates. It’s horrific.

Mark Ruiz4, I am sending you all the strength and courage in the world.

Oh man, please accept my deepest condolences... I am so incredibly sorry 😢
Hang in there. I truly hope you find some peace.

I haven't really posted much here, but I have honestly read every single one of your posts... I was just searching for some hope, a little comfort, or maybe even just a way forward, soaking up all your experiences and wisdom to help me figure out how to live with this illness, so I just wanted to say a massive THANK YOU from the bottom of my heart for having the strength to share what you've been through!
My Dad passed away on Sunday after a grueling 12-hour battle with a pulmonary embolism.
Even though we knew the outcome from the very first day he was diagnosed, everything still happened so incredibly fast and sudden... It’s going to take quite a while to pick up all the pieces left behind.
I'm wishing you all so much strength and courage, and please, don't ever let anyone steal your hope away...

placidcobra7 said:Thank you for everything. My Dad passed away on Thursday. Once the initial shock and grief subside, I plan to look into exactly what happened at the hospital. It’s hard to wrap my head around how someone can go from walking around independently and functioning perfectly fine to being immobile and on a feeding tube in just eight days. People were dying in that ward left and right, and the records office told me they couldn't even keep up with processing all the death certificates. It’s harrowing.

Mark Ruiz4, I am sending you all the strength and courage in the world.

Please accept my condolences; I truly wish you nothing but strength. My sister passed away at the Mayo Clinic just a month ago. In only fourteen days, she was gone—transformed from someone who could walk, laugh, and hold a conversation into someone fighting for her last breath. It is difficult to believe how quickly a person can be dismantled like that. Though, in her case, the diagnosis was an incredibly aggressive and brutal type: mesothelioma.
We are still in shock, likely not even fully grasping the reality of it yet... there is just sadness at every turn.

Hello.
I haven't been able to sit down and write calmly about everything happening with us. My partner and I have been going through a incredibly turbulent period.
At the end of November 2016, he was diagnosed with three tumors, as I mentioned before. A testicular tumor, melanoma, and a brain tumor.
We moved quickly to get in touch with the Mayo Clinic, and after seeing Dr. Melada, we secured a room in neurosurgery.
The brain tumor was removed; the PhD pathology report shows a high-grade anaplastic glioma. We were still fighting at the Mayo Clinic
to ensure they wouldn't discharge him until all necessary surgeries were complete. We managed to get his melanoma removed as well (pathology confirmed it was indeed melanoma),
and the testicular surgery was performed. After that, they let him come home, and within ten days, we already had the next two procedures scheduled at the Mayo Clinic:
a sentinel lymph node biopsy and a re-excision of the melanoma site.
Following all that, we consulted with oncologist Juretić, who suggested radiation to the head and Temozolomid therapy. We also found Dr. Gamulin,
who advised monitoring markers for the testicular tumor (the markers have dropped) and emphasized that addressing the brain issue is the priority.
Having read about a thousand pages online, I understand this is likely the only course of action they could offer, but we still sought a second opinion at Avian.
We visited them, they reviewed all the findings, and they recommended the exact same therapy. They told us there was no point in trying to
seek treatment at Avian right now and that we should accept the protocol in Washington, D.C. The treatment was approved by the board for my partner, so at the end of January 2017, we are heading to Washington, D.C. for planning.
Looking back at everything that has happened over the last month and a half, I honestly don't know where we found the strength to organize all of this. Mind you, we live in
California. However, I took advice from Angela Wright; in every conversation, I remained assertive and refused to back down until every single detail was settled with the doctors.
I don't know what the future holds. I am scared, both for him and for myself.
This forum has helped me immensely in making sense of this nightmare, so thank you to everyone participating.
Regards,
Minnie

Dear Minnie, I honestly can't wrap my head around the fact that your boyfriend has three primary tumors. If I'm understanding this correctly, they aren't metastases?
I truly admire your strength; you’ve stepped into an incredibly difficult fight, and I am sending you so much, so much luck. He’s young, which means there is hope, so keep focusing everything on strengthening his body.

As for my Dad, he is currently stable—though he is immobile and non-verbal, he is stable. We aren't pursuing surgery because they could likely only remove about half of the tumor, and even then, it would probably just grow back even larger immediately.
I don't know anymore; I've somewhat made peace with the worst-case scenario.
I'm just trying to find a way to live through this without falling into a pit of despair and dragging everyone else down with me. When things get too heavy, I just curl up on the bathroom floor and cry and cry. It helps release it.
I try my best to cheer Dad up, even though I think he's understanding less and less of what's happening around him. I'm just relieved he isn't in pain; it’s a small comfort, but it's all I have.

If he has to go, I just hope it's in the spring. I know how much he loves the spring. 🙂

Grace Ross20 said:Dear Minnie, I honestly can't wrap my head around your boyfriend having three primary tumors—if I understood correctly, they aren't metastases?
You both deserve so much credit for stepping up to such a massive fight. I'm wishing you nothing but the best of luck. He’s young, which gives him a fighting chance, so focus everything on strengthening his system.

As for my Dad, he's stable for now, though he's immobile and non-verbal. We aren't pursuing surgery because they could only remove maybe half the tumor, and even then, it would likely just grow back even larger immediately.
I don't know anymore; I've made peace with the worst-case scenario.
I'm just trying to get through each day without falling into a pit of despair and dragging everyone else down with me. When things get too heavy, I just curl up on the bathroom floor and cry. It helps.
I try to keep Dad's spirits up, even though I think he's becoming less aware of his surroundings. It's a small comfort, but at least he isn't in pain.

If he has to go, I hope it's at least in the spring. I know how much he loves the spring. 🙂

Oh man... those images are so familiar... and I am truly sorry about your Dad.

Going through this with the people who mean everything to you is incredibly hard... but there is some solace in knowing he isn't suffering.
That's what I realized with my sister once I saw that she wasn't in any pain. When you see the sheer agony people endure through this terrible disease, knowing there's no pain has to be some kind of relief.

That bit about the spring really got to me...

"If we ever have to say goodbye, let it not be in the spring..."

Donna Brooks20 said:Hey there!
I just can't seem to sit down and write out everything that's been happening with us while things are calm. My partner and I have been going through a total whirlwind lately.
Back at the end of November 2016, he was diagnosed with three different tumors, like I mentioned before. A testicular tumor, melanoma, and a brain tumor.
We moved fast to get in touch with the Mayo Clinic, and after seeing Dr. Melada, we managed to secure a room in neurosurgery.
They removed the brain tumor, and the pathology report confirmed it’s a high-grade anaplastic glioma. We were still fighting tooth and nail at the Mayo Clinic
to make sure they didn't discharge him until all the necessary surgeries were wrapped up. We finally pushed to have the melanoma removed too (pathology confirmed it was indeed melanoma),
and the surgery on his testicle was performed. After that, they let him come home, but within about ten days, we already had his next two procedures scheduled at the Mayo Clinic:
a sentinel lymph node biopsy and a re-excision of the melanoma site.
Once that was settled, we consulted with oncologist Juretić, who suggested radiation for the head along with Temodal therapy. We also reached out to Dr. Gamulin,
who advised monitoring markers for the testicular tumor (the markers have dropped) and emphasized how critical it is to stabilize the brain issue first.
After scouring thousands of pages online, I realize this might be the only path they could offer, but we still sought a second opinion from Avian.
We went there, they reviewed all the files, and they actually recommended the exact same treatment plan. They told us there was no point in trying
to seek treatment at Avian right now and that we should stick with the plan in Washington, D.C. The medical board approved my partner's treatment, so at the end of January 2017, we’re heading to Washington, D.C. to finalize the planning.
Looking back at everything that's happened over the last month and a half, I honestly don't know where we found the strength to organize this chaos. Just keep in mind, we live
out in California. But I took some advice from Ivanica; I made sure to be assertive in every single conversation, refusing to back down until I had ironed out every detail with the doctors.
I don't know what the future holds. I'm terrified—for him and for myself.
This forum has helped me wrap my head around this nightmare, so thank you all for being here.
Best to everyone,
Minnie

Man, I honestly don't know what else I could tell you; this is such an extreme situation to deal with mid-week.
A few days ago, I was watching an episode of House about a woman dealing with two cancers simultaneously, where one was kept under control by the other. I'm not sure how much of that is TV drama versus actual medical possibility.
My gut feeling is that they’ll focus on stabilizing the brain first.
Hang in there and just take it one day at a time. Who knows, maybe the Temodal will have some kind of effect on the testicular tumor and the melanoma too—maybe it'll set a precedent for some off-label clinical use in cases like this.

Grace Ross20 said:Dear Minnie, I honestly can't wrap my head around the fact that your boyfriend has three primary tumors. If I'm understanding you right, they aren't metastases?
Huge respect to you both; you've stepped into an incredibly brutal fight, and I am sending you all the luck in the world. He's young, which means there's real hope—keep focusing everything on strengthening his body.

My Dad is currently stable, though he's immobile and non-verbal, but stable nonetheless. We aren't pursuing surgery because they could probably only remove half the tumor, and even then, it would just grow back even larger immediately.
I don't know anymore; I've already made peace with the absolute worst.
I'm just trying to find a way to live, to keep from falling into a pit of despair and dragging everyone else down with me. When things get too heavy, I just curl up on the bathroom floor and cry and cry. It helps.
I try my best to cheer Dad up, even though I think he's understanding less and less of what's happening around him. I'm just glad he isn't in pain—that's a thin comfort, but it's something.

If he has to go, I just hope it's in the spring. I know how much he loves the spring. 🙂

Oh honey, I'm sitting here reading through my own past.
No matter how hard this gets, or how many broken pieces you feel like you'll be left with when this is over, you will survive it all in the end and somehow find a way to keep moving forward.
I think I mentioned before that being unaware of the full gravity of the situation is actually the kindest thing during all this agony.
Hang in there and cherish every single moment you can with him. It’s never enough. ❤️

Kate Morgan66 said:Hi there,

I'm cross-posting my "looking for a doctor..." thread here too. Any leads would be much appreciated. 🙂

I’m looking for a private clinic where I can get a high-quality abdominal and pelvic ultrasound. I really need a recommendation for a solid doctor who will actually take their time to examine me thoroughly (that's why I want to go through a hospital setting—I feel like they just kick me out after five minutes elsewhere).
I'm an oncology patient (gynecological cancer) and have undergone radical surgery (removal of all gynecological organs and surrounding tissue, plus lymph nodes), radiation, and chemotherapy. This is my first ultrasound since finishing treatment, so it would be ideal if the doctor has specific experience in oncology...

Oh man, I just saw this post.
I actually had an abdominal ultrasound done right here in the States two weeks ago with Dr. Kapetanović. He’s an older, highly experienced physician. He also did my breast and thyroid ultrasounds. I found him incredibly precise. He’s quiet during the actual exam, but he explains everything clearly afterward.

I used to work at Novamed two years ago. I can't recall her name specifically, but she was another excellent, seasoned doctor. She actually comments on everything while she examines you and shows you what she sees. She’s incredibly kind and warm, too.

Hey Nicholas Doyle91,
Speaking from experience after wandering aimlessly through endless medical facilities and dealing with subpar private clinics where I felt totally unsatisfied with the exams, I finally stumbled upon one phenomenal doctor. That was the end of my wandering and all those useless tests...
It’s the private practice of Dr. Nives Tarle - Bajić. She uses this specialized ultrasound—I think she's the only one in the entire country with this tech—but more importantly, she is an incredible diagnostician and just a genuinely warm person. She's the kind of doctor who actually recognizes the issue and gives you the right advice.
A whole bunch of us have seen her over the last year, and we have nothing but praise. Honestly, if only there were more doctors like her.
The consultation is worth every single penny.
For instance, she diagnosed my mother with a malignant stomach tumor with metastases before she even went through all the formal pre-op testing required by standard hospital protocols...
And then there's my husband. Some doctors in Switzerland almost had him undergo gallbladder removal when he didn't even have stones! Luckily, he went to her for a second opinion, and she saved him from an unnecessary surgery that his doctors in Switzerland—where his insurance is based—wanted to schedule after an emergency hospitalization... It just goes to show how often medicine turns into a business rather than a necessity.
As for me, she saved me from years of running in circles regarding my own health issues, and now I can finally breathe easy.
I trust this compassionate woman implicitly. She will always be my first choice in her field, and she also knows exactly which specialists to refer you to for anything else you might need...

Angela Wright and placidfalcon3, thanks a million...
After doing a bit of digging and hearing about a coworker's experience, I managed to track down Dr. Herceg over at the Mayo Clinic tumor institute. He actually works as an outside consultant at this local outpatient clinic, so that’s where I’m planning to head once the timing is right...
I’ve also got Dr. Tarle as my backup plan, since I've heard nothing but good things about her work 🙂