Posts by Grace Stewart6

Grace Flores14 said:Hi everyone. I’ve been following this thread for months now, but I’m finally speaking up because things have become quite difficult, and I just didn't know who else to turn to...

Dear Grace,
you really shouldn't have to deal with all of this at such a young age. My father passed away when he was 72, and even then, it felt far too soon.

I have to say, I truly admire how you still manage to take care of guests who come by the house despite everything else you're carrying. Is it actually reasonable for people to expect meals and desserts to be prepared under these circumstances? Surely being there for your mother should take precedence over hosting visitors.

You deserve a lot of credit for your maturity and strength.

Stay strong.

brisksurfer said:I was at the hospital today, and my dad is doing better. They started him on antibiotics because he developed some inflammation in his lungs and bronchi since he couldn't clear the phlegm. That’s why the poor man was struggling so much to breathe. They also put him on oxygen, which helped significantly. He’s actually in a better mood now, though he’s already getting annoyed because we aren't rushing to bring him home just yet.🙂)

The real issue lies with the underlying disease—small cell carcinoma. He went through chemo last year and finished radiation on December 28, 2009. Given that the tumor has returned and spread quite extensively, the doctor tells me that because he received a full dose of both chemo and radiation, they have exhausted all therapeutic options; apparently, there is absolutely no further treatment available for him. Since I find myself unable to trust the doctors anymore, I wanted to reach out and ask about your experiences. Are there truly no other medications we could attempt? Even if they are merely in clinical trials, we have nothing left to lose. He initially responded beautifully to the chemotherapy and radiation, but clearly, this disease is far more malignant than we hoped if it has returned like this. I will spend the rest of my life blaming myself if we don't try everything possible...😢

I am going to study the association forums further, but please, I am asking for any help you can provide as soon as possible!

Thank you all so much in advance!

brisksurfer,

I am certainly not wise enough to offer you any real advice.
When my father reached his final days, he had to take a staggering amount of medication. Because the cancer had spread to his brain, he suffered from epileptic seizures and was prescribed tablets to manage them.
He eventually lost the ability to swallow properly, so we would crush those pills into powder and try to administer them to him.
The poor man simply couldn't swallow it; the powder would just sit in his mouth, and he wouldn't even let us clean it out afterward.
I don't know; my brother remarked that it might have been kinder for him to pass away from a seizure rather than enduring that bitterness in his mouth.
I can't shake the feeling that we exhausted him, all while our intentions were purely to help.

Kitty, I am truly sorry.

nimbletrucker72 said:Hi everyone. I’ve been feeling absolutely terrible for the last seven days. My dad (68) had an X-ray, and they found a 6 cm tumor on his lungs. We went to Jordanovac today, but they sent him home and scheduled a bronchoscopy for December 12th, along with a CT scan of his chest and abdomen at a different facility—apparently, their equipment isn't great, even though the specialists claim otherwise. The doctor just told us not to expect anything good. What is that supposed to mean? Everyone seems to assume he doesn't have much time left. He finally sought medical attention after dealing with intense headaches for about 20 days (plus chest pain, though he's dealt with that for years) which he manages with Voltaren twice a day. Can I realistically assume he’s nearing the end because they won't tell us directly, or is there still hope for surgery or other treatments to slow things down? If anyone can offer some insight, please write back. Thanks!

Hi Kiki,
I hear you, and I can only imagine what you're going through right now. Facing news like that is devastating. Whether you want to admit it or not, your mind goes to the darkest places, wondering how much time is actually left. That was easily the hardest chapter for me. It’s been eight months now, and we've seen everything from good days to the worst. Eventually, fighting the disease becomes your new normal—driving Dad to chemo, constantly pushing him to take various supplements to boost his immune system.
My father was admitted to Jordanovac immediately because his primary care physician sent him straight to the ER. Once he started coughing up blood, he was fast-tracked for emergency admission. After a quick assessment at Jordanovac, the doctors decided it was best to keep him there since his condition wasn't stable.
It was honestly much easier managing all the tests while he was inpatient rather than having to drive back for every single appointment. Before that, he had done some preliminary testing at our local hospital.
The truth is, he’s weakened, and he deals with pain sometimes, but he hasn't given up. He moves slowly, but he still manages to handle small chores around the house.
Our doctor also gave us the grim news (there are metastases), but we find joy in the small wins—like whenever his blood work comes back clean or when the doctor notes that his general condition is stable.
Please, don't jump to the conclusion that it's almost over for your dad.
Try to view this as the beginning of a fight you'll be fighting together.

Elizabeth Gonzalez55 said:I’m sorry, but what exactly is the diagnosis? Is it malignant melanoma or basal cell carcinoma?

Because if we are talking about malignant melanoma (which, heaven forbid, it isn't), then the reality is quite different from the sanitized version doctors typically present. Our Dermatica told us everything was fine six years ago. Fast forward to today, and my husband is at Stage IV with no remaining therapeutic options, despite regular checkups. So, if this is indeed melanoma, please reach out; I can explain why physicians often withhold the full truth and what steps you might take to prevent the tragedy we have endured.

On another note, for those following our journey fighting melanoma, things have unfortunately taken a turn for the worse. The latest PET/CT scan revealed five new metastases, including one in the lungs. Since the only way to confirm the current status would be surgery or a biopsy—and my husband refuses any further surgical intervention—we are left with nothing but to wait and see how this unfolds.

He holds a profound belief in alternative healing, and his decision is to stop pursuing clinical trials or experimental medicine. While I don't entirely agree, I support him and hope for the best. After all, what else is there to do but hope?

The diagnosis is basal cell carcinoma. That brings me some relief, as I've read how vicious melanoma can be.
I am so sorry to hear that things have worsened for you, though I truly believe that faith and optimism play a role in the process.
From the very beginning, the prognosis for my father wasn't good. Metastases were detected six months ago, yet they still haven't located the primary tumor. When I saw the PET/CT results, I nearly fainted seeing how many spots appeared on the scans. However, he is a great optimist, as are we. There are difficult days, and then there are days when we can barely wrap our heads around his illness.
I honestly don't know where we would be without optimism and the belief that one should—and can—fight.

holloweagle6 said:Here’s my update:
My mom went for her follow-up at the hospital in Cleveland yesterday, and the specialist told her it was a skin tumor, scheduling the removal for a week from now. I somehow managed to convince her to just go to a private clinic to get it handled immediately, because waiting around like this is nothing more than a cruel game of nerves.

Well, my mother had her stitches removed today, and we finally have the results.
It turned out to be skin cancer, but the surgeon removed everything, and the dermatologist confirmed that should be sufficient. There is no need for radiation or any other treatments😁.
She will just need regular checkups to make sure everything stays under control.
I certainly hope everything goes smoothly for your mother once her procedure is finished.
The dermatologist mentioned to her that it was one of the less aggressive types of carcinoma.

Susan Diaz91 said:When we finally walked into a private clinic outside of America, the doctor’s first observation was... they put your mother through all that unnecessary suffering... he said you really have to check for swollen lymph nodes in the neck or chest first, because a simple biopsy of a node can reveal those cancer cells immediately.

With my father, it seems they’ve poked and prodded at everything—biopsying lymph nodes, removing growths, running PET/CT scans, bronchoscopies, you name it—and yet, they still haven't been able to locate the primary tumor. They've only found the metastases.
He's starting some general chemotherapy now, and we can only pray it actually helps.
Sometimes, unfortunately, establishing an accurate diagnosis isn't quite that straightforward, is it?

holloweagle6 said:First off, hello to everyone in this thread... I honestly don't know where to start because my search turned up nothing helpful. My mom has developed this spot on her back that bleeds, heals, and then starts all over again. It's spread, too. When her primary care physician saw it, she marked her referral as an urgent dermatology request and casually mentioned it looks like cancer. Naturally, we are all terrified 😢 though, I have to wonder, how can someone just toss out a diagnosis like that without being a specialist? Of course, Mom is scared, even if she’s trying her best to hide it over the phone. Since I'm far away from her, I feel completely helpless. I called her this morning to try and convince her to see a private specialist, but she refuses; she told me to leave her alone and stop panicking. She actually tried to go to the dermatologist yesterday despite the "urgent" note, but they sent her right back because you have to book an appointment in advance. If she had made a scene, would they have seen her immediately? Perhaps. But since she played by the rules, we are stuck waiting until next Tuesday. 😢😢😢😢 I don't even know what I'm looking for here, maybe if anyone has dealt with something similar? I've been losing my mind with worry since she told me yesterday.

Hello, holloweagle6,

My mother is going through the exact same thing. The spot looks identical to what you described. Her GP initially prescribed a cream, but when that failed to make any difference, she was referred to a dermatologist. Fortunately, we didn't have to wait nearly as long as you might. The dermatologist suspected malignancy and referred her to surgery to have it removed and sent for biopsy. The surgeon then informed my mother that she wouldn't be scheduled for the procedure for another two and a half months.
It’s enough to drive you mad.
We decided to bypass the wait and went to a private clinic, where she had the surgery last week. She goes in to have the stitches removed in about ten days, and then we should finally have the results. I am absolutely terrified of what those results will say.
I will certainly update everyone once we have the findings and know the next steps.
In the end, my mother also resisted the idea of paying for private care. We had such a hard time convincing her. Now, she doesn't regret it, especially since we'll have answers soon rather than waiting until the end of May for the operation.
I'm keeping my fingers crossed that everything turns out fine, and I truly suggest seeing a private doctor if you can afford it.

Maria Fox said:Greetings to everyone; I trust your respective battles are progressing as expected. 🙂

I’m feeling quite relieved today. My mother finally received all her test results, and everything looks perfect. Her radiologist actually told her—though he made sure to emphasize that he wasn't technically supposed to say it—that he considers her fully cured. Given her specific stage and these current findings, isn't it a relief to know that the probability of the disease returning is practically non-existent? 👋 🙂🙂🙂

I truly hope we see more news like this from time to time; hang in there, everyone. 🙂

Simply wonderful. 🙂🙂🙂
Thank God, and may we see many more pieces of news like this.

Hello,

Could anyone point me toward a reliable surgeon in NYC for mole removal? We just saw a dermatologist who recommended surgical excision to ensure they can send the samples off for testing, but the specialist we contacted won't be able to see us for another month and a half. Is it worth waiting that long, or should I look elsewhere?

Thanks,

stormymaker24 said:It looks like I’ll be joining your ranks. I recently started a thread here about my nephew’s rhabdomyosarcoma, which was already a massive shock for the whole family.
And now, my mom (51) just told me she has breast cancer. We didn't even get a chance to have a real conversation about how it all went down; I had to head out (I live in Washington, D.C., not with them), and she’s currently under the weather with a cold. As it turns out, she’s known about the cancer for a while now (one day she called me incredibly determined, insisting on taking me to a private clinic for a checkup regarding my endometriosis that won't quit acting up—it only hit me today that she likely called me on the very same day she found out, or maybe a few days later) but she kept it from me, simply because of my exams.
I don't know all the details yet; she hasn't told my sister either, so we spoke in hushed tones and kept it brief. All I know is it's stage two, and it likely surfaced about a year ago. Her breast is visibly deformed from the tumor, and for a year, they were just applying ointments to her eyes claiming that was the issue, until her doctor finally deigned to give her a referral for an ultrasound and a biopsy. 😠
She’s heading in for surgery this Friday—they're going to perform a mastectomy—and then it’s chemotherapy and radiation, whatever else is necessary. She’s going to the MD Anderson Cancer Center, and for now, she’s satisfied with the care and how they treat her. According to her, there are no metastases, which is, I suppose, the one silver lining in this entire mess.

Right now, I can't tell if I'm angry at her for not telling me sooner, for not getting the biopsy earlier, for not forcing her to go myself, for her doctor being so incompetent, or for not knowing enough about the subject to actually say anything useful.
I’m oscillating between crying, feeling optimistic, making plans, and feeling completely lost... honestly, I have no idea where to turn. Posting here felt like it might make some sense, so here I am. I've been reading stories from others who have gone through similar things, though I don't quite have the strength to read them properly.
I find some comfort in knowing that breast cancer is more often cured than it is fatal.

And thank you, Angela Wright, for the recommendation on that book from three pages back—I think that will be the first thing I buy for her.
As for now, I have a few questions: what happens after the surgery? How long will she be in the hospital? What is the best way for me to support her? What should I expect? Anything at all...
Thanks, everyone.

A friend's mother was diagnosed with breast cancer two and a half years ago, with slight metastasis. After undergoing a mastectomy, she went through radiation and chemo.
Today, she is doing perfectly fine. She goes in for checkups every six months.
Don't hold it against your mother. She was trying to spare you the worry and thought it was the best way to handle it.
Just be there for her; there is a very high probability that everything will turn out okay. 😉

jadetinker42 said:Just letting everyone know that another "game" ended today...😢😢 😢

Osteosarcoma vs. Youth: 1-0😢

And she was only 26...😢

It’s truly devastating.
Every story like this hits hard, but twenty-six? It makes you wonder why life works this way...

Susan Diaz91 said:Thanks for the advice, too... I'm actually quite drawn to that cancer center... their whole organization seems to work a bit differently...
I'll see what they say, though I've heard that when lung issues arise, they just send you over to MD Anderson, and apparently, there’s a notorious lack of coordination between the oncologists, pulmonologists, and thoracic surgeons there—as if they don't even bother working as a cohesive team.🤷 😕

Does anyone know if there's any truth to that?

I was actually recommended to Dr. Miculinić while I was there...

As for MD Anderson, I honestly don't know what to make of it. After spending three weeks at our local hospital, my dad was referred to MD Anderson under suspicion of lung cancer. They had already run several tests: a gastroscopy, colonoscopy, CT scan, and a pleural fluid biopsy. For the bronchoscopy, he was sent specifically to MD Anderson.
He spent nearly two months there undergoing a massive battery of tests, none of which pointed to a primary tumor.
The doctor was a very patient guy and quite polite, though rather man of few words. He kept saying they couldn't start any kind of treatment until the primary site was identified, but he was certain it was a tumor that had already metastasized.
Since the CT scan picked up a growth on the chest wall, the doctor "hoped" that might be the primary tumor, so they decided to surgically remove it and send it for analysis.
The analysis revealed it was just a metastasis.
In that specific instance, it seemed the cooperation between the surgeon and the pulmonologist was actually quite good.
After that, Dad was sent home for a month of post-op recovery.
Then, he was admitted back to MD Anderson, where they repeated the bronchoscopy and several other tests within a single week, only to come up empty again.
Following that, they sent him for a PET/CT and a bone scan. According to the PET/CT, it looks like the primary tumor is actually in the colon.
This whole process has been dragging on for five months now; we still don't have definitive answers, and Dad hasn't even started any actual treatment.
I'm not saying they weren't trying hard with all the testing, but it really bothers me that an oncologist wasn't involved in the process from the very beginning.
At times, we felt like the doctors were truly giving it their all, but at other moments, we couldn't help but think that this entire thing could have been handled much more efficiently and effectively.

Lisa White54 said:We’ve started running tests to figure out what we're actually dealing with. Hopefully, my husband is as healthy as the doctors seem to think he is. He’s seeing an ENT today based on what the PET CT showed, and he has a urologist appointment next week. We’re just taking this one step at a time, tackling issues as they arise through our primary care physician. Thank God we have a new doctor at the clinic who actually wants to help. As for the bone scan, I wouldn't push for it right now, just in case the X-ray results eventually demand a skeletal scintigraphy instead. Once these initial tests are done, we’ll see if a scan is necessary depending on what the specialists suggest.

Lisa White54, I'm keeping my fingers crossed that everything goes smoothly. Let's hope for the best, though I suppose you won't truly be at peace until the test results confirm it.
I do have one question. How is your husband managing all these procedures given the pain he's in?
My father still has a mountain of testing ahead of him before we get a final diagnosis, and honestly, who knows how long this will drag on; the pain in his hands and spine is becoming quite exhausting for him. He takes some painkillers, but the waiting itself is draining. We’re heading to the Mayo Clinic next week for a colonoscopy, and they’ve already warned us that we might be sitting there for up to ten hours before they even call his name.
I truly don't know how he's going to endure it.

wanderingharbor61, please accept my sincerest condolences.

Lisa White54 said:So, I wanted to check in with some good news. We were at Jordan yesterday for testing, and everything came back clear. Based on all the results, the doctor said there isn't any sign of cancer anywhere... it turns out he was just dealing with PTSD. Thank God. I can hardly believe we actually beat this thing and it’s truly gone! I am just so happy.

Lisa, I am truly so glad to hear such wonderful news.
I've been following your updates closely because my father spent quite a bit of time at Jordan as well.
It serves as living proof that you have to keep fighting, because winning is actually possible.🙂

Amy Hayes28 said:My father has passed away forever.😢
Thank you Jane and everyone else who reached out to offer support during this difficult time.

I am so incredibly sorry. My deepest condolences.

Angela Wright said:And just like President Reagan used to say, "My friends, we did it!"...

Starting March 1st, Sutent and Tarceva will finally be covered by Medicare!🎉 🙂 🙂

Get treated, people!👍

Moving forward!

Wonderful news.

Even though they still haven't identified my father's primary tumor, and I have no way of knowing if these specific drugs will even help him, I am incredibly relieved for everyone else who will benefit from this.

Kudos to the "For a New Day" association and everyone else who helped make this happen.🙏

Dear Dina,

Your optimism and sheer strength have left quite an impression.

I find myself thinking that there is now one more advocate up there, someone who will continue to encourage us and stand by our patients.

THANK YOU.

It seems to me that even the lady at Medicare isn't to blame here. She looked like someone caught in a tight spot, forced to ask uncomfortable questions while simply following the protocols she was given. One would assume she actually takes some pride in doing her job correctly.
I suspect these decisions are being made at a much higher level.