Support resources for families dealing with cancer and other serious illnesses

User123

Maybe you could try asking at the Dubrava Basketball Club clinic. I think some older women were actually getting calls for preventive screenings specifically for mammograms there back in October 2010, so maybe that's a place where you could book an appointment. Personally, I’ve had really great experiences at the Dubrava Basketball Club, though mine was for maxillofacial and oral surgery. Everyone there was just so kind and approachable. They saw me right away—that was actually about nine years ago—but I truly do have such good memories with the Dubrava Basketball Club.

When was the last time your mom had a mammogram? Does the letter for those preventive screenings say to return it if she's already had one within the last year? The Department of Health and Human Services sends those out to home addresses. I guess they probably assume once a year is enough, but I don't know what the protocol is for women who have already dealt with cancer... whether they need to go more frequently. Plus, their instructions mention that mammograms can't detect every single type of tumor. That actually really surprised me. In their brochure, they only briefly mention women under 40, saying if they want to, they can go for an ultrasound every two years, but it's not mandatory. It felt so strange to me, too, because breast cancer does show up in women in their mid-twenties and thirties, often in more aggressive forms, yet they seem to have drawn this line at age 40.

mistyjackal842 said:User123

For a mammogram, you might want to look into the Dubrava Basketball Club clinic. Back in October 2010, older women were getting sent notices for preventative screenings specifically for mammograms at the Dub دعا Basketball Club facility, so you might be able to schedule something there. Personally, I had a great experience at the Dubrava Basketball Club, though it was for maxillofacial and oral surgery. Everyone there was incredibly kind and accommodating. They saw me right away—this was actually about nine years ago—but I still have really positive memories of the Dubrava Basketball Club.

When was the last time your mom had a mammogram? These preventative screening notices mention that if you’ve already had a mammogram within the last year, you should just return the notice. The Department of Health and Human Services sends these directly to people's homes. It seems they assume once a year is enough, but I wonder how things work for women who have already battled cancer—do they need to go more frequently? On top of that, their own instructions state that mammograms can't catch every single type of tumor. That actually caught me off guard. In their brochure, they only briefly mention women under 40, suggesting that if they really want one, they could opt for an ultrasound every two years, but framing it as "not mandatory" felt weird to me. Breast cancer hits women in their mid-twenties and thirties too, often in more aggressive forms, yet they seem to have drawn this arbitrary line at age 40.

Breast cancer is the most prevalent malignancy in women, appearing in as many as 27% of cases, and it ranks first among female-specific cancers causing death (at 18%).
The most vulnerable group includes women over 50, as well as women of any age who have a blood relative who has fought breast cancer.
In its early stages, breast cancer is asymptomatic and is usually discovered by chance during a routine checkup. When a tumor is caught in its earliest phase, the cure rate climbs to 95%, which makes early detection programs—those that emphasize self-exams, regular clinical visits, and mammograms—absolutely vital.
All women over 40 are advised to undergo an annual mammogram to ensure any changes in breast tissue are spotted promptly.
While breast cancer most commonly affects women over 50, we are seeing an increasing number of cases in women under 40 and even 30. In younger women, the disease tends to progress more rapidly than in older patients, making timely diagnosis even more critical. Because breast tissue is denser in women under 40, mammograms are less effective as a diagnostic tool; therefore, ultrasounds are recommended for younger women instead.
Women between ages 20 and 40 should perform monthly breast self-exams, along with a clinical exam once a year (or at least once every three years).
At age 40, a baseline mammogram is necessary, followed by annual mammograms and clinical exams alongside regular self-exams. While maintaining a healthy lifestyle and avoiding harmful habits can significantly help prevent cancer, preventative screenings and early detection remain the absolute best way to protect a woman's health.

Angela Wright said:My dear, what you’re saying there is only partially correct.
The real issue here lies with the people who stay silent, lurking in the shadows and complaining anonymously. They seem to operate under this unspoken assumption that non-profits—which, let’s be honest, are usually just a tiny handful of dedicated enthusiasts and tireless fighters—should step up and fight their battles for them. It’s almost as if they expect these organizations to champion their rights while simultaneously demanding total anonymity. When activists actually try to identify who is being affected to build a real case, these people want to remain ghosts. It’s a frustrating dynamic to navigate.
Given the sheer inertia of patients today, all this talk about "rights" feels utterly hollow. Things aren't just stagnating; they're deteriorating by the day. People sit comfortably in their warm homes, lulled into a false sense of security by the grey monotony of their own lives, essentially waiting for someone else to step up and fight their battles for them. But that’s not how the world works. You don't win wars by sitting on the sidelines, and you certainly don't solve problems by letting others take the hits. In this life, nothing is ever truly guaranteed—not even our most fundamental human rights. Those things don't exist as permanent fixtures; they only exist because we show up every single day to fight for them.
And from that, I dare to conclude that... We have exactly the kind of healthcare system, the kind of Secretary, and the kind of administration we deserve—the very one our own attitudes and apathy have allowed to take root.

I find myself agreeing. In our experience over the last month or so, we’ve had families calling us up, desperate because they're being told they have to wait indefinitely for radiation treatments, asking if there's any way we can step in and help. It’s heartbreaking. When we suggest that they either need to file a formal grievance or go straight to the Chief of Oncology at the MD Anderson Cancer Center to demand answers, they just shut down. They retreat. Honestly, what are we even supposed to do? I feel like I’ve become numb to the whole thing by now, and that realization is absolutely terrifying. 👎

Grace Cruz87 said:Thanks so much for the reply. My mom has been through just about everything; she’s always been such a fighter. I still remember how incredibly well she handled her thyroid surgery—the doctor later mentioned that her energy and positive mindset did 90% of the work during her recovery. And don't even get me started on our experience at the hospital in Miami. Instead of running the necessary tests to figure out the number and type of nodules, they actually referred us to a psychiatrist instead 😲... Once we finally managed to get her to the Mayo Clinic, they operated on her the very next day. A few months later, we ran into that doctor in town, and when my mom asked how she was doing, she couldn't help herself and snapped back that she had just returned from an asylum. I suppose there are unprofessional people in every industry, but encountering someone like that in medicine—where lives are literally on the line—really makes you realize you have to stay calm and level-headed. She has a surgery scheduled for 2:00, and I’m just praying to God that everything goes smoothly. If we need to fight, we're ready. 👍

That hospital in Miami... it hurts just thinking about it 😠. They took a tissue sample from my mom there, and the analysis showed great results, only for them to find out in Miami that the sample was taken from the wrong spot. Their initial findings were catastrophic. Fortunately, things have improved, and she’s responded beautifully to treatment. You could talk forever about unprofessionalism, and while some inappropriate comments really shocked me, I also saw firsthand that there are plenty of people in this field who deserve every bit of praise. Wishing you the best of luck; the waiting for results is always the hardest part.

slyseal28 said:I couldn't agree more. For instance, over the last month, they’ve been calling families to tell them they’re stuck on a waiting list for radiation and asking if there’s anything we can do to help. But the moment we suggest either walking away from the treatment entirely or taking the matter directly to the Head of Oncology to lodge a formal complaint, they just shut down. What are we supposed to do? Honestly, I’ve become somewhat numb to the whole thing, which is a terrifying realization... 👎

Does anyone actually believe that the administrators in our hospitals are oblivious to how long people are waiting for radiation, surgery, or basic diagnostic screenings?! It isn't true that the issue lies solely with patients who are too intimidated to speak up; the problem is significantly more systemic and far more sinister—it’s a corrupt infrastructure.
I filed an initial verbal complaint and followed it up with a formal written one regarding my own radiation appointment, yet it was utterly futile. The only explanation I received was the standard line about "more urgent cases" taking priority, all while I sat there waiting for three months. Three months! Let that sink in.
The entire waiting list system exists precisely so the healthcare industry can operate on a foundation of bribery and nepotism. If you have the right connections, you can bypass every single queue at the hospital instantly; if you have the cash, you simply opt for private care. In short, everyone understands how the game is played.
On one side, we are trapped within a corrupt system; on the other, we have patients desperately trying to navigate the wreckage, alongside an increasing number of advocacy groups that lack the actual leverage to effect meaningful change. In fact, some of these organizations inadvertently reinforce the status quo by merely performing busywork.

Things will continue to spiral downward until the entire system inevitably collapses under its own weight. Until then, it’s every man for himself.

Aaron Hill44 said:Does anyone honestly believe that hospital administrators don't know how long people are waiting for radiation, surgery, or basic screenings!?! It’s a fallacy to claim the issue is just patients being too timid to complain. The problem is significantly larger, and its name is a corrupt system.
I filed my complaints both verbally and in writing regarding my radiation appointment, and it was all for nothing. The only explanation I received was that I had to wait because there were "more urgent cases." And I waited three months. Three months! Just think about that.
The waiting lists exist precisely so the healthcare system can operate on a basis of bribes and various "connections." If you have the right contact, you can get any exam done immediately without a single day of delay; if you have the cash, you simply go private. Everyone knows how the game is played.
On one hand, we are stuck with a corrupt system, and on the other, we have patients trying to navigate it, along with an increasing number of advocacy groups that are powerless to change anything meaningful—in fact, their very existence seems to inadvertently uphold the status quo.

Things will only continue to deteriorate until the entire system eventually collapses under its own weight. Until then, it’s every man for himself.

I didn't say the administrators aren't aware. However, you have to file those complaints to create a paper trail, ensuring there is proof of whether the delay in radiation is actually justified. You should have sent correspondence to the department head, the director, the Secretary of Health and Human Services, and even the media. Waiting three months for radiation is catastrophic, but try doing a quick search on news portals—you'll see how little coverage this issue actually gets. Far too little.

As for the advocacy groups, saying they support the status quo is a pretty harsh thing to say. The real issue is that many patients join these organizations but never actually participate. Our group is run by just three dedicated activists, with a few members chipping in occasionally. But when we organize a rally or a booth—how many people show up? A shameful amount. And I’m not just talking about the patients themselves, whose absences are often understandably due to illness or treatment; I am talking about their families and friends. Where are they when it matters???

slyseal28 said:Waiting three months for radiation therapy is an absolute catastrophe. It’s unacceptable. But honestly, do yourself a favor and go do some digging on the news sites. Just see how much they actually talk about the radiation crisis. Not enough! It’s pathetic.

I remember when they told us the waitlist was three months long. I nearly passed out right then and there. I have never heard of such an absurd delay in my entire life! It is absolutely disgraceful!
I completely believe what you said about patients being too afraid to speak up publicly. That’s just how Americans are in general. When they're unhappy with something, they just grumble behind closed doors and act like big shots in private, but when it comes to actually making a scene in public? Absolute silence. Not a single soul says a word. 😲
We wouldn't be stuck in this mess across the entire country if things weren't run this way. Period.👎

brisksurfer said:I remember when they told us the waitlist was three months long—I nearly fainted right then and there. I’ve never heard anything about those kinds of delays anywhere else! It's absolutely appalling.
And regarding what you said about patients being too afraid to speak up publicly? I believe you. That’s just how Americans are in general. When something goes wrong, they complain behind closed doors and act like heroes in private, but when it comes to making a public stand, nobody says a word. 😲
The whole country wouldn't be in this mess if people actually spoke up.👎

People don't seem to grasp that forming patient advocacy groups provides massive leverage. All it takes is stepping forward and saying, "Look, I've been waiting three months for radiation treatment, and here is my situation," and then the organizations can take it from there. By coming forward, patients can effectively shut down officials who try to claim everything is running perfectly. Until someone proves otherwise and starts pointing out the cracks, the authorities get to pretend everything is fine. That’s just the way the game is played.

Every single public statement made by those who chose to act through our association has led to real results. Today, those individuals receive the level of care they deserve, and nobody dares to try any shady business with them because they know they're dealing with someone assertive who will fight tooth and nail for their rights.

Go back and read the very beginning of this thread where we all discussed the need for an organization that actually bites back.
Well, now we have one. Use the advantage we have now—an advantage we didn't have when this entire discussion first started!

I have absolutely zero interest in getting bogged into some petty back-and-forth or playing philosopher, but I feel compelled to state that Ivanka Trump and certain activists are nothing more than spinning fairy tales.
In this country, everyone fancies themselves an expert. It’s a total myth that patients just sit there in silence; our news outlets and TV networks are constantly saturated with these stories, yet the healthcare system hasn't improved one bit because of them—and frankly, it isn't going to.
I’ve spent far too much time wrestling with the American medical establishment to be fooled by how it actually functions. It honestly sickens me to hear these narratives about people who finally secured the care they deserved only by fighting through some advocacy group, implying that everyone else is somehow too passive to merit better treatment. I know how to fight my own battles, so I don't need an association to hold my hand, and when it comes to this rotting healthcare system, let's be real: no amount of organized advocacy has moved the needle at all.

Aaron Hill44 said:I don't have the energy or the slightest desire to get dragged into some endless back-and-forth or listen to people trying to act wise, but I have to say that... Angela Wright i slyseal28 They're just spinning fairy tales.
Everyone around here thinks they’re an expert on everything. It isn't like patients are just sitting there keeping quiet; the newspapers and news networks are absolutely saturated with endless stories and drama. But let’s be real—all that noise hasn't actually made the healthcare system any better, and frankly, it isn't going to change in the future either.
I’ve spent way too much time wrestling with the healthcare system to fall for these fairy tales. Honestly, hearing stories about people finally getting the treatment they deserve just because they joined some advocacy group makes me sick. It’s easy to judge, but there's a massive difference between those fighting tooth and nail and the ones who stay passive—some people just don't put in the work to earn better results. Look, I’m a fighter myself; I don't need some nonprofit holding my hand. And let’s be real: when it comes to this rotting American healthcare system, these associations haven't actually changed a damn thing.

Look, friend. The two of us just happened to find ourselves in the exact same boat. We met right here in this thread, and unlike all those other people who do nothing but sit around crying and making excuses for their own laziness and passivity, we actually decided to take the bull by the horns.
We founded this association back in 2007, and we’ve been in the trenches with people every single day since. We’re still out here grinding through all sorts of messy situations, even after losing our own most beloved ones. If you actually have the will and the time—and more importantly, if you aren't too narrow-minded or stuck in your ways—click on my profile to see exactly what this group does. It’s just a small handful of us, but we make it count. To start with, we provided you and everyone else a centralized hub where you can find everything from info on various malignant diagnoses and diagnostics to clinical trials. We also built a forum where you can grab advice, swap experiences, or just vent to lighten the load. For what it's worth, before this site launched, there was absolutely nothing like this available in the American language or anywhere else in the old South, which is why we get so many visitors coming in from those regions.

When it comes to how much impact an association actually has, it all boils down to a simple truth: an organization is only as powerful as its members are active. That’s the entire heartbeat of civil society. Think of it this way—an individual is just one small gear in a massive machine. But when you stack enough of those gears together, you don't just have parts anymore; you have a functioning system.

When you read those news stories about people battling illness, they almost always focus on individual tragedies—heartbreaking accounts of families scrambling to scrape together enough cash for a life-saving drug or an overseas surgery. Sure, that kind of crowdfunding might save one person here or there, but it’s a band-aid on a bullet wound. A system built on charity doesn't actually change anything; it doesn't face any pressure to evolve or fix its broken parts. Real, lasting reform only happens through systemic shifts. If we want actual results, we have to stop looking at these as isolated misfortunes and start working through organized civil society and advocacy groups. That's the only way to force the hand of the establishment and drive meaningful change.

Everyone knows the story of the people who sparked a revolution within our association—it all centers around the drug Sutent. It wasn't just about three individuals stepping up to scrape together cash for their own treatments; they went public to fight for the bigger picture: getting Sutent added to the Medicare coverage list. Because of them, we don't have 200 people every single year fighting losing battles just to fund something that they are morally and ethically entitled to receive. Sadly, of those original pioneers, only Mrs. Smith is still with us today. She’s undergoing regular treatment with Sutent, which has been incredibly effective for her. Even though the drug is insanely expensive, nobody is out to sabotage her by trying to kick her off the coverage list through some shady legal maneuvering. Unfortunately, that kind of thing happens constantly to women in our group battling breast cancer. Their treatment success is being sabotaged just when they're responding well to the medication, but unlike Mrs. Smith, most of these women simply don't have the guts to speak up. There isn't much the association can do about it either; if we push too hard, the authorities just dismiss us as telling fairy tales.

And finally:
You’re a textbook example of your people. Honestly, I get why you're so worked up. It’s just human nature to dig your heels in when faced with your own shortcomings instead of just owning them. It’s a reflex.

As for those old fairy tales? We outgrew them ages ago. Our real story isn't found in some bedtime fable; it's written in our actions and the work we actually do.

Angela Wright, let me be perfectly clear: I am not your friend, nor has your association provided me with even a shred of value. Consequently, I have absolutely no intention of revisiting this discussion.
By all means, feel free to continue basking in the glow of your own self-congratulation.

Aaron Hill44 said:Angela Wright, I'm not your friend, your association hasn't done a damn thing for me, and I have zero intention of dragging this conversation any further.
Go ahead and keep patting yourself on the back all you want.

😈
🤣
What a piece of work😍

Angela Wright said:Listen, friend. By some sheer stroke of luck, we ended up in the exact same boat. We met right here on this thread, and unlike all those other people who do nothing but whine and hunt for excuses to stay lazy and passive, we actually grabbed the bull by the horns.
...

I’ve gotta hand it to you two—honestly, nobody else even comes close! You guys are in a league of your own! 😍😍😍

When I was losing my mind over my father's health, this was the one—the only—place where I actually found support and advice that meant something. I will always be grateful to you all for that. 😘😘😘

And those people who haven't the slightest clue about everything we're doing for all of us... they'd better just shut their mouths and stay out of it! ☕

P.S. I’m actually a member of a volunteer organization myself—thankfully one that focuses on actually doing good in the world. So, believe me, I know exactly how infuriating it is when outsiders try to lecture you, acting like they have all the answers when nobody is actually offering a helping hand. Once things settle down, and once I finally make peace with my own situation, I hope I'll find the courage to step up and help you all.

Is it actually possible to get a wig covered by Medicare after I've only finished my second out of six chemo cycles?
I'm trying to figure out how the process works—what are the steps, what does it end up costing me out of pocket, and where should I even start looking?
Thanks so much, everyone!

ironlynx41 said:Is there any way to get a wig covered by Medicare after just the second out of six chemo cycles?
How does it work, what's the cost, and where should I go?
Thanks, everyone!

Your oncologist needs to document the medical necessity for a wig in your clinical history, regardless of which cycle you're currently on. Once that's done, your primary care physician can file the claim with Medicare. After the commission approves it, you take that paperwork to an authorized vendor. I know of one right in Downtown Washington, D.C. Honestly, most of those "covered" wigs aren't worth the money they charge, and if you put down $67 more, you can usually snag something significantly better quality.

Angela Wright said:....

Thanks so much for sharing that info!!!

Thank you all for the replies—honestly, after days of silence, I had almost stopped checking this thread in hopes of hearing anything back...

We finally managed to get the mammogram, the breast ultrasound, and the abdominal ultrasound sorted out

After calling every single clinic in Washington, D.C. that we knew had a mammography machine, my mom and I were just... losing our minds. Between being told there were no openings, people hanging up on us, or just nobody picking up the phone at all—it was exhausting. Eventually, through sheer persistence—literally on our millionth attempt—we reached a clinic in the Downtown area, and they were actually great. They told Mom she could drop by any day between 8 and 12 with her referral, and they squeezed her in. Since some places were asking for a referral just to book an appointment, we weren't quite sure if that meant we needed to schedule first or if we could just show up for the actual scan. Anyway, she went in, and since it was a Monday, she ended up being seen that day. (Just a little tip: they seem to book appointments for the following month after the 15th of the current month). If I remember correctly, the technician who performed the scan saw a shadow on the image, so she immediately sent Mom to see the doctor—which meant she got the breast ultrasound done that very same day too.
While the doctor was doing the ultrasound, Mom asked if they also did abdominal scans, and the doctor was incredibly kind—he initially said they were swamped, but then he took the initiative and told her to come back today at 7:30 AM because he’d be on duty and would take care of her. So, in any case, 👍 thanks to Dr. Smith

After that, we headed over to the Mayo Clinic for a colonoscopy, and now that we have all the results in hand, we can finally say that everything looks good 🎉

As for the local cancer center... we called them up and they told us they have no availability. Apparently, their prevention program only sends out screenings every two years, which is just heartbreaking when you consider how many women suffer from that type of cancer 👎
It's true, women really should take the initiative to get checked, but let's be real here—some people won't even think about it until they get a formal notice from Medicare

It's the same thing that shocked me lately—I still can't believe that Pap tests are now covered by Medicare only once every three years. It feels like they're always looking for somewhere to cut costs 😢

And a suggestion for the association: maybe it would be helpful to have one central place where all the facilities with this kind of equipment are listed?
I searched through your website, but I couldn't find anything like that

ironlynx41 said:Is it possible to get a wig covered by Medicare after just the 2nd out of 6 chemo cycles?
How does it work, what's the damage, and where should I go?
Thanks, everyone!

ironlynx41, what Angela Wright said is spot on. Just a heads up—that wig shop near Downtown is tucked away in a courtyard. The name starts with a Q... and their selection isn't half bad. Since you have to bring the patient along to try things on, just give them a ring beforehand to let them know when you're coming—they'll save you a parking spot right in front of the shop. It was a total lifesaver for my mom.

Also, make sure you tell your GP to write a prescription specifically for long hair—it bumps up the Medicare coverage (somewhere around $233). You just pay the difference on-site; we ended up paying an extra bit ourselves. For about $1300, $467 you can find some decent wigs, though obviously, the real human hair stuff costs a fortune. Plus, if you buy directly from them, you don't have to deal with the headache of getting the referral validated elsewhere—they handle all that paperwork internally. My best advice? Go during the day—you really need that natural light to see if the color actually looks right 🙂

This probably sounds like a blatant ad for the shop, but honestly, the service was top-notch. Hope this helps 😉 you and anyone else in the same boat.

Hey everyone,
I'm new here and could really use some guidance.
My dear aunt was diagnosed with Malignant melanoma four months ago. She's already gone through three surgeries, but they didn't stop it—if anything, it’s spreading faster now.
Surgery isn't an option anymore. All we have left is chemo, which I hear isn't even effective for melanoma.
What are our options?

We've started on a targeted diet, and next week we begin chemotherapy.
Is there anything else we can do?

Has anyone here dealt with clinical trials?
I've reached out to every research institute I could find, but nothing has come back yet.

And has anyone tried that vaccine from Cuba?

frozenotter72 said:Hi everyone,
I'm new to these forums and I am desperately asking for some guidance.
My dear aunt was diagnosed with Malignant melanoma four months ago. She’s already gone through three surgeries, but instead of stopping the spread, it seems to be moving even faster now.
Surgery isn't an option anymore, so we are looking at chemotherapy, which, from what I understand, isn't very effective against melanoma.
What are our options?

We have started a targeted nutritional plan, and next week she begins chemo.
Is there anything else we should be doing?

Does anyone here have any actual experience dealing with clinical trials?
I've reached out to every research institute I could find, but I haven't heard back with anything promising yet.

Has anyone tried that vaccine from Cuba?

Unfortunately, most of what you mentioned regarding chemo and melanoma is spot on.
Take a look at the studies over here:
http://www.clinicaltrialssearch.org/search.php just type "Malignant melanoma" into the search bar.
Otherwise, you can find US-based clinical studies right here: http://www.clinicaltrials.gov
When it comes to melanoma, sadly, there isn't