Support resources for families dealing with cancer and other serious illnesses

Robert Grant84,

I am truly sorry for your loss. Believe me, I know exactly how this feels—no matter how much you prepare yourself or how much you know it’s coming, it still hits hard.
I don't have anything else wise to say.😢😢

My aunt was recently diagnosed via MRI with a low-grade astrocytoma, a type of brain tumor. We have already consulted with three different neurosurgeons regarding her care. Two of them suggested a "watch and wait" approach, recommending she simply manage things with Tegretol. However, a third specialist recommended traveling to a major medical center in a city like Chicago to undergo a biopsy. Being from out of state, we are weighing our options, but my aunt is adamant about avoiding surgery and prefers to rely solely on medication. The doctors maintain that since this specific tumor grows so slowly, there is no immediate cause for alarm and surgery isn't necessary right now. If anyone has navigated a similar situation or can offer some insight into this course of action, please let me know.
Greetings.

Megan Bennett2 said:My aunt was diagnosed with a low-grade astrocytoma (brain tumor) after an MRI. We’ve consulted three different neurosurgeons. Two of them say we shouldn't do anything other than have her take Tegretol, but the third one is recommending a biopsy in Chicago (we're traveling from Mexico). She’s refusing the biopsy and insists on just sticking to the medication. The doctors claim this tumor grows slowly and there's no need to worry, and everyone agrees surgery isn't necessary right now. If anyone can provide more insight on this, please let me know.
Best regards.

Look, you simply cannot get a 100% certain diagnosis without a biopsy. Just because a scan looks like a low-grade astrocytoma to a doctor doesn't make it a fact—regardless of how much experience they have. I strongly suggest getting that biopsy and seeking second opinions at major medical centers, whether that's in Chicago or Belgrade, once you actually have the pathology report in hand.
As for the Tegretol she’s taking, keep in mind those are anti-epileptic drugs, not a treatment for the tumor itself. A tumor can trigger seizures, and those seizures alone can cause additional damage to the brain.

Robert Grant84 said:My mother finished her 1.5-year grueling battle yesterday.

I am so sorry; please accept my deepest condolences. 😢
Hang in there.

Angela Wright said:Get in touch with Dr. Braš at Rebro. She's a psycho-oncologist.

Dr. Braš is actually a psychiatrist and psychotherapist who specializes in psychological support for cancer patients.
She isn't an oncologist. 😉

DEPARTMENT DIRECTORY
Marijana Braš, PhD, MD
psychiatrist-psychotherapist
Psychiatric Clinic
KBC Chicago, Šalata 4
Mob: 098 22 33 23
Tel: 01 233 28 25
E-mail: mbras@kbc-chicago.hr
marijana.bras@os.t-com.hr

Sophia Gonzalez79 said:Dr. Braš is a psychiatrist and psychotherapist, specifically specializing in providing psychological support to cancer patients.
She isn't an oncologist. 😉

DEPARTMENT DETAILS
Marijana Braš, PhD, MD
Psychiatrist-Psychotherapist
Psychiatric Clinic
KBC Chicago, Šalata 4
Cell: 098 22 33 23
Tel: 01 233 28 25
E-mail: mbras@kbc-chicago.hr
marijana.bras@os.t-com.hr

I’m not going to sit here and argue that I'm right, but from what I know, therapists who provide psychological aid to cancer patients are specialists in psycho-oncology. To put it plainly, she isn't an oncologist—meaning someone who manages the actual medical treatment of the malignancy itself—but rather a psychiatrist dealing with the mental health struggles that arise, or could arise, from the traumatic experience of the illness. Along with Dr. Gregurek, Dr. Braš actually co-authored an article on psycho-oncology which explains how this specific discipline was established and exactly what its scope covers.

My mom was moved from the ICU to the surgical ward today after spending four days there. Despite some pretty grim prognoses, she’s actually recovering from the surgery. They had to remove 35 cm of her bowel at three different spots, along with a massive tumor mass from her abdominal cavity. Tomorrow, they’re going to try giving her some liquids to see how her digestive system handles it. I’m not getting my hopes up too high—there’s still a long road ahead.
If anyone knows: is she cleared for a brain MRI now (maybe in a week, assuming the wound heals okay)?
I'm also worried about the lung metastases—she has several, the largest being 12 mm—and both adrenal glands have masses measuring 50-70 mm in length and width. What’s the deal with that? Is there any help available? And what kind of symptoms should I look out for once those start causing real trouble?

My deepest sympathies go out to everyone here who has lost someone in this fight.
Your stories truly touch my heart.
Things are going incredibly well on our end. My father-in-law handled his 7th cycle of chemotherapy exceptionally well. I honestly believe that after every successful CT scan showing a reduction in the tumor, he gains even more strength to keep pushing forward. He is being as disciplined as possible and refuses to let himself break. When I think back to the very beginning of this hell, I can hardly believe he’s the same man. Back then, he was just lying there in his room, refusing to eat, and he actually dropped 14 pounds, but now, everything is wonderful. He’s regained his weight and, more importantly, his will to live. He is the one in control of this situation, not the cancer.
Stay strong, everyone, and keep fighting with courage... cancer happens, but we believe it doesn't have to be the end.

If you know someone battling metastatic prostate cancer, please let them know—as far as I know, and I can't speak for every hospital out there, though I know Vinogradska isn't part of this—that Rebro is participating in international clinical trials involving two of the latest drugs approved abroad (in the US and EU) for metastatic prostate cancer: abiraterone and cabazitaxel (brand names are Jevtana and Zytiga).
The oncology team at Rebro includes specialists from urological oncology like Dr. Bišćan and Dr. Grgić, and Dr. Solarić can also provide excellent guidance.
I truly hope this information helps someone out there.
There are specific criteria required to join a study, so it’s vital to contact an oncologist early enough to see if you qualify.
Information regarding which studies are being conducted at which hospitals should technically be available everywhere, but in reality, it often isn't. Doctors ought to share this, but they don't always. That’s why I’m sharing this now.
If anyone thinks I'm just advertising medications or pushing questionable experiments... please, a quick check will show that both abiraterone and cabazitaxel are already approved treatments; essentially, it's not like we are testing an unapproved drug!

I should clarify that neither abiraterone nor cabazitaxel is (yet) approved here in America. However, since they are approved overseas, I assume these aren't some "wild west" trials involving experimental drugs that haven't passed safety standards yet.
The fact that they aren't registered locally doesn't change much right now, mainly because they are so expensive that I doubt they'll be added to any insurance coverage lists anytime soon. Plus, prostate cancer isn't the kind of disease that makes front-page news; nobody organizes massive charity concerts to fund these specific drugs. It usually affects older patients, who unfortunately don't always get the same media spotlight or public sympathy.
Sorry if that sounds harsh, but it's just the reality of the situation.

feralridge3 said:Hey everyone! I don't usually hang out in threads like this because, honestly, heavy stuff just hits me hard, but with all the bad news floating around lately, I figured I’d drop in with some good vibes. 🙂
After being out on medical leave for 3 years, 7 months, and 6 days, I'm finally back at work with an NG tube (for those who don't remember my story: a nasty brain tumor, one relapse, and a second one caught right at the start).
I’ll be the first to admit I'm not quite the same person I used to be—my optic nerve took a hit and I've lost some hearing—but I'm not throwing in the towel yet. I'm just taking it one day at a time, seeing how far I can push. 🙂 The specialists told me that, all things considered, I actually did pretty well. ☕
The main thing for me is just being able to work and not having to lean on anyone else, whether that's physically or financially. 🙂
Sending you all—or your loved ones—nothing but strength in the fight against the bad stuff.🙂

I am seriously so happy for you... You actually pulled it off!! Way to go!!

<3

Please forgive me if I’ve missed the mark with this topic, but I honestly wasn't sure where else to turn.
Is there actually a way to screen for cancer throughout the entire body, regardless of its location?
To be blunt, I am incredibly worried about my mother. Both of her sisters have been diagnosed with carcinoma within just the last year, and I want to get her checked out immediately. The problem is, I'm at a loss as to which specialist she should see or which specific tests would be most effective for a comprehensive screening.

Brenda Alvarez24 said:I forgot to mention that neither abiraterone nor cabazitaxel are approved in America yet. But, based on what I said earlier, they are approved abroad, so I assume it isn't some sketchy, unofficial study ( like those questionable ones involving unapproved drugs still in the testing phase ).
The fact that they aren't approved or registered here in the States doesn't mean much right now, because they are so expensive that I don't see them getting added to any insurance coverage lists anytime soon... besides, prostate cancer isn't the kind of cancer you see splashed all over the news. Nobody organizes massive charity concerts to fund treatments for this... it usually affects older people, so it just doesn't grab the headlines or the media spotlight.
Sorry if this sounds harsh, but it's the truth.

Drug trials are typically driven by pharmaceutical companies producing the specific medication with the ultimate goal of getting it registered in the US and added to insurance formularies, following that standard sequence. Basically, for a drug to even get registered in America, a study has to be conducted at our local clinics, regardless of whether dozens of studies already exist abroad proving its effectiveness. Only after the efficacy is confirmed here and registration—meaning the permit to sell in the US—is finalized, does the lobbying begin to get the drug included on medical coverage lists. Given how many doctors tend to panic or play it overly safe even with less serious medications and situations, the chance of "wild" or rogue studies existing is kept to an absolute minimum.
Everything else stands, but I’d also add that just because someone is elderly doesn't mean they don't have younger family members or friends who can advocate for them; nobody stays young forever, and eventually, we'll all be hitting that 50+ mark. However, conscience and social awareness are pretty low on the priority list and moral compass of most Americans. Cancer is still treated as a taboo or something shameful, and people don't talk about it—especially when it hits somewhere as sensitive as the groin area, for heaven's sake.😳

Ashley Fox42 said:Forgive me if I'm off-topic, but I honestly don't know where else to ask.
Is there a way to detect cancer in the body, regardless of where it might be located?
Specifically, I am extremely worried about my mother because both of her sisters were diagnosed with cancer within the last year. I want her to go get checked out immediately, but I don't know which specialist to see or exactly which tests to request.

She can undergo a full physical and routine screenings for the cancers where those exist, such as breast, uterine, and colorectal cancer. Additionally, if she is a smoker, she should get a spirometry test, and if there are any concerning symptoms, a chest X-ray. Similarly, if she has stomach issues, a gastroscopy is an option.
If her sisters had breast cancer, your mom is definitely at risk, as are you, and testing is absolutely mandatory. The same logic applies to colorectal cancer.
So, make sure she gets a mammogram, a gynecological exam with a PAP smear and an ultrasound, and a stool test for occult blood—plus a colonoscopy if necessary (in principle, everyone over 50 should be doing this).

I am not sure if this question has already been asked, so if it has, please direct me to the correct sub-forum where this is discussed.

My mother was diagnosed with gastric adenocarcinoma and underwent surgery eight months ago. She had a gastrectomy, and in addition to the stomach, they removed her pancreas, gallbladder, the omentum, and 17 lymph nodes from the gastric region. Her tumor marker results and post-op MRI were excellent—it looked as though the disease was completely gone. Despite that, she decided to undergo chemotherapy and radiation as a preventative measure based on her oncologist's advice. She completed five cycles of chemo and 25 radiation sessions. She lost quite a bit of weight in the process, but she can now maintain a steady weight and has a very good appetite. After each of the first four chemo cycles, she would recover within a week and return to her normal routine. However, after the fifth and final cycle, she hasn't been able to bounce back. It has been six weeks since she finished therapy, and she is still bedridden. She is constantly exhausted and sleepy, and walking is incredibly difficult for her. She feels like her legs simply won't support her; she’s currently using a walker and gripping walls and doorframes just to move, and she tires out almost instantly. Despite all this, her appetite is good (though nothing seems to be sticking), and she can sleep at any time. We were told that it takes six weeks for the cytostatic drugs to clear the organs and that the only solution right now is to eat, eat, and eat. Following that last chemo cycle, she has also been struggling with her balance, which makes me suspect the radiation might be to blame, even though they only irradiated the remaining lymph nodes in the stomach and armpit area. She thinks she needs to see a neurologist, but I am at a loss for what to do. We have already delayed her first follow-up appointment with the oncologist because she is physically unable to make the trip, and we were told to wait until she recovers sufficiently. Is it normal for recovery to take this long, to show almost zero progress, and to experience balance issues resulting from chemo and radiation?

I find myself wondering if she will ever be able to walk independently again—without a walker or a cane—and if she can partially return to a normal life (by which I mean basic housework, going to the grocery store, working in the garden... things that actually make a person feel useful rather than like a burden to everyone else). Every day we work hard at exercises, doing leg strengthening routines I learned during my own physical therapy when I had knee issues. What should we be doing?

electricwolf19 said:I’m not sure if this question has been asked before, so if it has, please point me toward the right sub-thread.

My mother was diagnosed with gastric adenocarcinoma and underwent surgery eight months ago. She had a gastrectomy, and along with the stomach, they removed her pancreas, gallbladder, the omentum, and 17 lymph nodes from the stomach region. Her tumor marker results and post-op MRI were excellent—it looked as though the disease was gone. Despite that, based on her oncologist's advice, she opted for chemotherapy and radiation as a preventative measure. She completed five cycles of chemo and 25 radiation sessions. She lost quite a bit of weight in the process, but lately, she’s been able to maintain a steady weight and has a very good appetite. After each of the first four chemo cycles, she would bounce back within a week and return to her usual routine. However, after this fifth and final cycle, she just hasn't recovered. It’s been six weeks since the therapy ended, and she is still bedridden. She is constantly exhausted, drowsy, and finds walking extremely difficult. It feels like her legs simply won't carry her; she’s now using a walker and has to grab onto walls and doors just to move, and she tires out incredibly fast. Even with all this, her appetite is strong (though nothing seems to be sticking), and she can sleep all day. We were told that the cytostatic drugs take about six weeks to clear the system and that the only way through this is to eat, eat, and eat. Since that last round of chemo, she’s also having issues with her balance, which makes her suspect the radiation might be the culprit, even though they only radiated the remaining lymph nodes near the stomach and armpit area. She thinks she needs to see a neurologist, but I’m at a loss for what to do. We’ve already pushed back her first follow-up with the oncologist because she isn't physically capable of making the trip, and we were told to just wait until she recovers. Is it normal for recovery to drag on this long, where there’s almost no visible improvement, and to have balance issues that could be a side effect of the chemo and radiation?

I find myself wondering if she’ll ever be able to walk independently again (without the walker or a cane) and get even partially back to a normal life—meaning basic chores, going to the grocery store, tending to the garden, and all those little things that make a person feel useful rather than like a burden. Every single day, we work hard at exercises, doing leg strengthening routines I picked up during my own physical therapy when I had knee issues. What should we be doing?

Mom is right; she needs to see a neurologist immediately. Even though everything was removed and she went through chemo and radiation, we are still dealing with metastatic disease—a condition that has already established itself—and there is always the possibility that something managed to migrate to the brain. If that happens, God forbid, you need to get it under control as soon as possible!
Beyond that, other tests should be run, because something like pleural effusion, for example, can manifest as fatigue and shortness of breath. Stop delaying the oncology appointment. You can take Mom to the oncology department via the ER, where they can perform all the necessary tests, including neurological imaging like a CT scan.
As for the recovery process and how people handle chemo, it is highly individual. In this case, you absolutely have to rule out any complications.

electricwolf19 said:She completed five cycles of chemotherapy and 25 radiation treatments. She lost quite a bit of weight in the process, but she’s managed to stabilize her weight now and has a very healthy appetite. After each of the first four chemo cycles, she would bounce back within a week and return to her normal routine. However, after this fifth (final) cycle, she just hasn't been able to recover. It’s already been six weeks since the therapy ended, and she’s still stuck in bed. She’s constantly exhausted, sleepy, and finds walking incredibly difficult. It feels like her legs simply won't support her; she’s currently using a walker and has to grab onto walls and doorframes just to get around because she tires out so quickly. Despite everything, her appetite is good (though nothing seems to be sticking), and she can sleep at any time. We were told it takes about six weeks for the cytostatic drugs to clear the system, and that the best thing we can do right now is focus on nutrition—just eating, eating, and eating. Since that last round of chemo, she’s also having trouble with her balance, which makes me wonder if the radiation played a role, even though they only targeted the remaining lymph nodes near the stomach and armpit area.

Dear electricwolf19, I read your post and wanted to reach out because my mother is going through a very similar situation. This is actually the third time in eight years that she’s been diagnosed with cancer. Back in 2005, it was one breast; she went through 12 rounds of chemo and two months of radiation. Then in 2009, it was the other breast, involving 6 rounds of chemo and two months of radiation.

Last spring, she started losing weight rapidly and began experiencing incontinence. After being admitted to the hospital, tests revealed both primary and secondary carcinomas in the ovarian and bladder areas, as well as the abdomen.

She underwent five cycles of chemotherapy, which she actually tolerated much better than her previous surgeries, vomiting, and nausea. With this specific round, she didn't suffer from nausea and would usually recover within two or three days. However, that sixth and final cycle really took its toll on her. She just hasn't been able to pull herself out of it. She struggles to breathe, can't walk, and is perpetually exhausted. The doctors didn't seem to react much at first; they just kept sending her for more scans and tests. It wasn't until I had to physically lead her into the doctor's office because she couldn't walk on her own that I finally explained the severity of what was happening. Only then did they prescribe antibiotics, which honestly left me speechless. Later, they sent her for lung imaging because I pointed out that she sounded like she had bronchitis and was breathing at half capacity. After the lung scan, they saw fluid buildup in the lower section, so they performed a puncture. Fortunately, they didn't find malignant cells—they drained about a quart of fluid.

But since she still isn't recovering, they are now sending her for bone scans because they suspect metastasis might have spread to the bones. They aren't entirely certain yet, as the imaging shows a fissure in the spine that could be from osteoporosis or metastases. It’s frustrating that no one thought to focus on rebuilding her immune system or providing nutritional supplements during her recovery. But I'm not here to critique our medical system or the doctors. I just wanted to share our story in case it offers you some perspective.

Angela Wright said:So, you absolutely have to get your mammogram done, schedule a gynecological exam including a Pap smear and an ultrasound, plus a fecal occult blood test and a colonoscopy if necessary (generally speaking, everyone over 50 should be getting one checked out).

Can that stool test actually be handled by a primary care physician, or do I need to book an appointment with a specialist? If it's a specialist, who am I looking for... a proctologist?
Thanks.

Ashley Fox42 said:Can a stool test be handled by a general practitioner, or do I need to book an appointment with a specialist? If I do need one, who should it be... maybe a proctologist?
Thanks.

The doctor just writes you a referral for the lab.

Thanks to Angela Wright and Freyr for the comments on my post. It really gives you pause when you read all of that. On the bright side, Mom is breathing quite well—deep breaths, full lungs—so there likely isn't any pleural effusion. As for anything else, I won't know until we get the results back from the CT scan. She’s still just as weak and exhausted as before; she hasn't improved, though she hasn't taken a turn for the worse either. Perhaps Easter Sunday and the arrival of spring will finally bring her some relief.

mistybadger55 said:From what I can gather, Dr. Dabelić said—if we get lucky and the Gamma Knife actually shrinks those brain metastases, meaning the follow-up MRI shows nothing left in the brain, then we head back to Vinogradski and Mom can start her treatment.
I know I'm grasping at straws here, but there’s still some hope.

.

The metastases in Mom's brain are sitting at 12x19 and 15x19 mm right now. Even though those sizes are definitely manageable—and they deal with much larger ones via Gamma Knife all the time—Dr. Mihaljević just gave us a hard NO today. Short, blunt, and totally merciless. His reasoning? "The primary disease progression isn't under control"—basically because she has metastases in her lungs, adrenal glands, and a few other lymph nodes.
I just don't get it. Has anyone ever shown up there with brain metastases and actually had their disease "under control"? If things have already reached the brain, the disease clearly spiraled out of control a long time ago. But they just refuse to treat it...😢😢
It makes zero sense and I don't think I ever will. It’s pathetic, really. They just write a person off, when maybe treating this could have bought her a few more decent months of life.
I honestly feel like breaking something right now.

electricwolf19 said:.... Perhaps the Easter break and the arrival of spring might help her feel a bit better.

I wasn't sure if you mentioned whether your mom is losing weight, but I can see she looks incredibly frail. My own mother was put on Glucerna, which is a complete nutritional supplement specifically designed for people managing high blood sugar levels. It’s produced by Abbott, and I noticed they actually offer nutritional options for those without diabetes as well. It might be worth asking her doctor about a prescription for something similar to help strengthen her system. Wishing you all the best...