52-Year-Old Mom’s Confusion and Speech Problems Were Dismissed as Menopause, But It Turned Out To Be Glioblastoma: ‘There Are Going To Be Setbacks… But There Is Still Light’

Recounting how his mom’s symptoms arose, he said, “Suddenly she started sending messages that didn’t really make sense. Her speech became confused and disjointed. Looking back now, it was such a clear sign that something was seriously wrong.

“At first, doctors blamed it on menopause and anxiety. These doctors had known my mum for 20 years and knew her typical personality and capabilities. But you trust what GPs [general practitioners] tell you, because you want to believe everything is okay.”

RELATED: The Difficulty of Treating Brain Tumors and the Emergence of Targeted Therapy

Dr. Stephanie McNally, Medical Director for Katz Institute of Health at Northwell Health, previously spoke with SurvivorNet to clarify the difference: between menopause and perimenopause, saying menopause is the point at which a woman has gone 12 months without a period, while perimenopause is the transition leading up to it.

What’s the Difference Between Menopause and Perimenopause? A Leading OB/GYN Explains

“For a woman going through a natural hormonal transition, menopause, and I say natural meaning there’s no chemicals, there’s no surgery, there’s no chemotherapy, which obviously affects your patients differently,” says the leading OB/GYN.

“The average age in the United States is about 51 to 52, where your periods will stop,” Dr. McNally explains. “So it’s the full year without a period equals menopause. Menopausal is anything happening after, and perimenopause is the time leading up to that last period.”

RELATED: Menopause Keeping You Up at Night? Top OB/GYN Explains Why Sleep Matters More Than Ever

Menopause, however, was not the reason for Dilger’s symptoms. Her condition continued to deteriorate, Jack explained, noting how she ultimately was unable to speak and would experience fainting episodes.

“The misdiagnoses continued with multiple trips to A&E [the hospital] my parents took. It was only after a routine gynecology appointment in November 2018 that the consultant saw how unwell she was and referred her for an emergency scan where the tumour was discovered in the 30 minutes it took to complete,” Jack continued.

Admitting how nothing could have prepared his family for her brain tumor diagnosis, he said his mom had an approximate 8-hour surgery, to remove the majority of the tumor, scheduled almost immediately.

“Doctors had warned us she may not be able to speak afterwards, so it was life-changing to hear her wake up talking and asking why everything had taken so long,” he explained.

RELATED: Top Experts Say The FDA’s New Guidelines For Clinical Trials Have Huge Implications For Patients, The Crucial Research That Saves Lives

Following surgery, Dilger underwent six weeks of radiotherapy and 12 cycles of chemotherapy.

Jack said his mom initially responded well after treatment, regaining her independence and staying relatively stable for almost three years following surgery, radiotherapy, and chemotherapy.

Then, when the tumour returned, she was scheduled for another surgery, which ended up being delayed several times. Once she underwent surgery, she endured severe complications including meningitis, infections, and repeated hospital stays across 18 months.

What came next was a series of procedures, including a 20-hour reconstructive operation performed by neurosurgeons and plastic surgeons.

Jack added, “The trauma caused by 13 brain surgeries in two years, means that mom now experiences speech difficulties and right sided weakness. Despite this, she continues to be two steps ahead of the rest of us. She still goes to the gym once a week and we even took a trip to New York last year.

“This year my mum celebrated her 60th birthday, a milestone that once seemed beyond our wildest dreams. We held a party with her closest family and friends, where she was the light in the room, just as she has always been.”

Hoping to spread awareness on brain tumors Jack said, “There needs to be more awareness and faster diagnosis. One thing I’ve learned through all of this is how little people understand about brain tumours and how difficult diagnosis can be. Headaches, speech problems, seizures, vision issues; these symptoms are too often dismissed.

“I genuinely believe people should be diagnosed from the top down. Rule out the life-threatening things first instead of waiting until someone becomes critically ill. Because when you’re dealing with glioblastoma, every week matters. There also needs to be better access to treatment.”

He concluded, “As traumatic as this journey has been, we haven’t, and never will, give up hope for my mum and others. To any family receiving a diagnosis today, I’d say: hold onto absolute and resounding hope, and advocate unfailingly for your loved one. Ask questions and challenge what you might be told.

“There are going to be setbacks and terrifying moments, but there is still light on the other side of it.”

Turning to SurvivorNet for Help

For patients and families navigating a brain cancer diagnosis, or any cancer diagnosis, finding trials can feel overwhelming. That’s why SurvivorNet encourages patients to use its proprietary Clinical Trial Finder, a free tool designed to help patients identify relevant trials quickly and easily.

Every year, new early-phase studies come online, each one representing another step forward.

As Dr. Simon Khagi, a neuro-oncologist at the Hoag Family Cancer Institute in Newport Beach, California, previously explained to SurvivorNet, progress in glioblastoma won’t come from a single breakthrough, but from smart combinations, persistence, and continued participation in clinical trials that keep hope alive where it once didn’t exist.

Meanwhile, SurvivorNet’s proprietary platform, “My Health Questions,” was built specifically for the realities of cancer care experienced by patients and caregivers, and not as a general‑purpose chatbot.

It handles both complex clinical issues and everyday logistical concerns with accuracy, clarity, and personalization.

Users can create a tailored health profile by entering details such as age, gender, and location, allowing the platform to refine responses over time. This reflects SurvivorNet’s mission: pairing cutting‑edge technology with physician‑driven expertise to make complex medical information accessible and actionable.

The tool guided him with the same safety‑first approach that clinicians emphasize.

Crucially, the tool is doctor‑supported. Leading oncology experts review the information to ensure it is accurate, safe, and easy to understand.

The goal is not to replace clinicians, but to help patients arrive at appointments better prepared with informed questions and a clearer understanding of their care journey.

This combination of AI efficiency and medical oversight is already making a difference.

Understanding Glioblastoma Multiforme (GBM) & The Standard Of Care

Glioblastoma multiforme (GBM) is the most aggressive form of brain cancer. It grows rapidly and infiltrates surrounding brain tissue, making it challenging to treat. A diagnosis of glioblastoma is indeed overwhelming, but understanding your treatment options can empower you to make informed decisions about your care.

After you’ve had a full work-up, experts say getting a consultation at a treatment center that sees a lot of patients with brain cancer can be an extremely valuable step.

A Utah Brain Cancer Expert’s Quick Guide To The ‘Standard of Care’ Treatment Options For Glioblastoma

Dr. Randy Jensen, a neurosurgeon at Huntsman Cancer Institute in Salt Lake City, tells SurvivorNet that the standard of care for glioblastoma is typically to start with surgery.

“The standard of care for glioblastoma is to start off with a maximal safe resection, and that means having your surgeon pull out all the stops of anything they can do to maximize resection [removal],” Dr. Jensen explains.

While surgery is often where treatment starts, the treatment path for glioblastoma requires a comprehensive approach involving multiple medical specialties. Your care team may include neurosurgeons, medical oncologists, radiation oncologists, neuro-oncologists, and supportive care specialists.

The treatment approach for glioblastoma may consist of the following steps.

1. Surgery: The first step in treatment is often surgical removal of the tumor, also known as resection. The goal of surgery is to remove as much of the tumor as possible while preserving neurological function. Complete removal is often difficult due to the tumor’s infiltrative nature, but reducing the tumor size can improve the effectiveness of subsequent treatments. In cases where surgery is not possible due to the tumor’s location, a biopsy may be performed to confirm the diagnosis.
2. Radiation Therapy: Following surgery, most patients undergo radiation therapy to target any remaining cancer cells. Radiation uses high-energy X-rays or protons to damage the DNA of tumor cells, preventing them from growing and dividing. It is typically administered five days a week over a period of six weeks. Radiation therapy is a crucial component in slowing tumor progression and improving survival rates.
3. Chemotherapy: Temozolomide (TMZ) is the standard chemotherapy drug used in glioblastoma treatment. It is taken orally and works by interfering with the tumor cells’ ability to replicate. TMZ is often used in combination with radiation therapy (concurrent chemoradiation) and then continued as maintenance therapy for several months.
4. Tumor Treating Fields (TTFs): TTFs are a newer, non-invasive treatment option that uses alternating electrical fields to disrupt cancer cell division.

Dr. Jensen explains that after surgery for brain cancer, a tumor board meeting often occurs, where doctors with different specialties meet to assess the case together and decide the best way to proceed with treatment.

The purpose of the tumor board is to give brain cancer experts with different specialties the opportunity to discuss and decide on the best possible treatment approach.

Side Effects of Glioblastoma Treatment

Each glioblastoma treatment comes with potential side effects. Your medical team will work with you to manage these effects and improve your quality of life.

Surgery side effects can include:

• Swelling in the brain (edema), which may require steroids to reduce inflammation
• Neurological deficits, such as difficulty speaking, memory problems, or muscle weakness, depending on the tumor’s location
• Infection or bleeding at the surgical site

Radiation side effects can include:

• Fatigue, which can persist for weeks after treatment ends
• Hair loss in the treated area
• Skin irritation or redness
• Cognitive effects, such as difficulty concentrating or memory problems

Chemotherapy side effects can include:

• Nausea and vomiting
• Increased risk of infections due to lower white blood cell counts
• Fatigue
• Low blood platelet levels, which can increase the risk of bleeding or bruising

Tumor Treating Fields (TTFs) side effects can include:

• Skin irritation from the transducer arrays
• Mild to moderate headaches
• Scalp sensitivity
• Psychological adjustment to wearing the device for extended periods

When Are Tumor Treating Fields Used?

Tumor Treating Fields (TTFs) represent an exciting advancement in glioblastoma treatment. This therapy is designed to slow tumor growth without affecting healthy brain tissue.

TTFs use low-intensity, alternating electric fields to disrupt cancer cell division. This is achieved through a wearable device that delivers continuous therapy on the scalp. These fields interfere with the tumor cells’ ability to multiply, ultimately slowing or stopping tumor progression.

Two major clinical trials, EF-11 and EF-14, demonstrated that TTFs provide a survival benefit for glioblastoma patients:

• EF-11 Trial: This trial focused on recurrent glioblastoma and found that patients receiving TTF therapy had comparable survival rates to those receiving chemotherapy, but with fewer side effects
• EF-14 Trial: This trial demonstrated that newly diagnosed glioblastoma patients who used TTFs alongside standard chemotherapy had significantly improved survival compared to those who received chemotherapy alone

TTFs may be recommended in the following scenarios:

• Newly Diagnosed Glioblastoma: After surgery, radiation, and chemotherapy, TTFs can be integrated into the treatment plan to enhance survival rates. The device is typically used continuously for at least 18 hours per day to maximize its effectiveness.
• Recurrent Glioblastoma: For patients whose tumors have returned, TTFs may be an option to extend survival and manage disease progression.

Your healthcare team will assess your overall health, tumor characteristics, and previous treatments to determine if TTFs are suitable for you. Factors such as your ability to wear the device consistently and your comfort with its use will also be considered.

What to Consider When Clinical Trials Are an Option?

Within the U.S., all new drugs must go through clinical trials before the FDA approves them. Although the rewards of clinical trials can be great, they also come with risks. Talking to your doctor about this before enrolling in a trial is important. Some risks to consider include:

• The risk of harm and/or side effects due to experimental treatments
• Researchers may be unaware of some potential side effects of experimental treatments
• The treatment may not work for you, even if it has worked for others

Before you enroll in a trial, you must be allowed to read the consent documents thoroughly and to ask any questions you may have. The documents will likely contain the following:

• The purpose of the research
• Any risks and benefits expected from the research
• Information about procedures that may cause discomfort (like frequent blood tests)
• Any alternative procedures the patient might consider instead
• How the patient’s information will be kept private
• How long is the study expected to take
• A form confirming you are participating in research voluntarily
• Whether any compensation or additional medical care is available if some sort of injury occurs
• The patient’s rights (like the right to stop research in the middle of the trial)
• Contacts for any patient questions

Patients are allowed to walk away at any time during the trial. Understanding your rights as a voluntary patient is important before you participate in a clinical trial, and understanding that the treatment may not work is also crucial.

Do Clinical Trials Cost Participants Anything?

Clinical trials may also have no extra cost for the participants, as the study’s sponsor may pay for the treatment and any additional care. Some sponsors even pay for travel to and from appointments or treatment centers. Patients should ask what will be paid for before signing up to be part of a trial.

The ‘Placebo’

During the treatment of an experimental drug in a clinical trial, while some participants receive the real thing, others do not. These participants receive a placebo.

The placebo is “an inactive substance or other intervention that looks the same as and is given the same way as an active drug or treatment being tested. The effects of the active drug or other intervention are compared to the effects of the placebo, as defined by the National Cancer Institute.

In some cancer clinical trials that are “randomized,” patients who enroll are randomly assigned to receive either a placebo or the new experimental drug being studied. If the clinical trial is “double-blinded,” that means that neither the patients nor the doctors running the clinical trial know who’s in which group. This is an important part of a clinical trial design because it safeguards against bias and the possibility of skewed results.

It’s important to know that getting zero treatment isn’t usually the reality of the “placebo arm” anyway.

Instead, when patients with life-threatening cancers enroll in randomized clinical trials, the two groups are often broken into the new, experimental drug and a “control” group that receives the “standard-of-care” treatment.

Treatments considered standard of care are those that experts accept as the go-to treatment for specific cancers. Standard-of-care, in other words, is the most used treatment.

In many cases, it might involve a combination of chemotherapy, surgery, or radiation, but not always.

Questions for Your Doctor

If you have been diagnosed with glioblastoma, here are some questions you may consider asking your doctor. We also encourage you to explore SurvivorNet’s proprietary AI-platform “My Health Questions” to assist you with your cancer journey.

• What stage is my brain cancer?
• What are the treatment options for my brain cancer?
• Am I a good candidate for temozolomide?
• What are the risks and benefits of the recommended treatment?
• What are the side effects of the recommended treatment?
• How long will it take to recover from treatment, and will I be able to return to work and normal activities?
• What’s the likelihood that insurance will cover the recommended treatment?

WATCH: How SurvivorNet’s Proprietary AI-tool “My Health Questions” Is Making a Difference In Patient’s Lives

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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