How a Prostate Cancer Diagnosis Can Impact Patients’ Mental Health

While any cancer diagnosis comes with its share of mental health challenges, there are factors unique to prostate cancer that can be of particular concern to patients, as one radiation oncology nurse explained.

“[What is] interesting and unique to prostate cancer has to do with their staging, of course, and what degree of prostate cancer do they have,” Jessica Fox, a radiation oncology nurse with Providence Cancer Institute in Portland, Oregon said during a conversation that was part of the “Speaking Out” video series.

“This ends with them often seeing multiple doctors,” Fox said. “They have a consultation with a urologist, they have that option to get the prostate completely removed. They have a consultation with a radiation oncologist and they can possibly talk about several modalities of radiation that the patient might be eligible for. And sometimes, depending on their staging, it's a wait-and-see situation [where] it's low risk, it's slow growing, they have the option to just not do anything right now and just track PSA [prostate-specific antigen, a protein associated with the presence of prostate cancer in the body] and see what happens. And I think each of those aspects causes some degree of turmoil for the patient.”

“Making those decisions, it can be stressful, [patients] want to do what's best for them, they want to do what's going to have the most minimal side effects,” Fox said. “[They’re asking,] ‘How is this going to affect my life the least?’ And then, of course, there's the wait and see, which might be a blessing to some people. But also I've seen for others that this in itself is really stressful because that lingering [sense] of, ‘When am I going to have to do something? Am I going to have to do something? And sometimes patients just want to be done with it and not have to think about it.”

During the episode of “Speaking Out,” Fox also discussed the importance of establishing a rapport between patients and nurses, how cancer’s impact on patients’ day-to-day lives can impact their mental health and resources that are available to patients.

For more news on cancer updates, research and education, don’t forget to 

Videos

As part of our “Speaking Out” video series, we look at the association between prostate cancer and mental health.

When faced with scanxiety, one technique Annie Bond uses is yoga breathing exercises to help “breathe through it and just get through the moment.”

3 Ways a Survivor Manages Scanxiety After Metastatic Breast Cancer

Scanxiety — a term patients and survivors of cancer use to describe the anxiety experienced before cancer scans — can take a toll on the body, physically and mentally. So, it’s important to find ways to help ease some of this anxiety, explained survivor, Annie Bond.

“Any time I feel overwhelmed with [metastatic breast cancer], or if there's some kind of scare happening, or I’ve got scanxiety, I just remember it’s all a big adventure,” Bond said during an interview with CURE®.

 and cancer advocate who shares her experience with cancer with thousands of followers on social media platforms, including Instagram and TikTok.

For others who may experience scanxiety, “I would say don’t be afraid to voice those fears to somebody you love, to your safe space,” Bond said. “Don’t be afraid to tell your doctor if you’re very anxious because you want to get through your scans with ease.”

Having a Cancer Community on Social Media Can Be Healing

Bond sat down with CURE® to discuss three ways that help her manage some of the scanxiety that others can try too.

I love yoga and I feel like yoga gets a bad rap for people saying that it's going to cure your cancer. It's not going to do that. But yoga breathing exercises [can be helpful and] you can find a lot of them on YouTube for free. I found those extremely helpful when I'm in a scan and I know I have to stay still. And if my song memorizing isn't working, nothing's working. If I can really focus on those breathing exercises and especially practicing them at home, you can kind of remind yourself that you're safe. It's just a scan, it doesn't mean anything's back, and you just try to breathe through it and get through the moment.

But the other thing, if nothing is working, I learned this from the show “Unbreakable Kimmy Schmidt,” which is you can get through anything for 10 seconds. So get through it for 10 seconds. And once you get through that, well guess what? You can get through another 10 seconds and just get through it.

Or pretend that you've been abducted by aliens and that you've got to just go with it. These weird aliens are walking around, putting me in their tube. All right, I gotta go with it so that they'll go teleport me back home. Use your imagination. That's the real way.

This transcript has been edited for clarity and conciseness.

subscribe to CURE®’s newsletters here.

Dana Frost, a cancer survivor and grief advocate, said writing about survivors’ guilt and connecting with others feeling the same way was therapeutic. 

Connection May Help With Survivors’ Guilt

Survivors’ guilt is a common feeling when someone loses a loved one to cancer, but sharing stories and letting others know that they are not alone in that feeling could be therapeutic, according to Dana Frost.

Frost is a Hodgkin lymphoma survivor and founded the Forced Joy Project after her husband, Bradford Frost, was diagnosed with stage 4 renal cell carcinoma. After her spouse’s death, Frost said that she struggled with survivor’s guilt, but found solace in writing about it and connecting with others.

 Grief Advocate Explains the Difference Between Forced Joy and Toxic Positivity

“I think that the more that we can talk about and normalize these difficult things, we’re just paving the path and the way for other people [who] are coming later, for them to give themselves permission to feel all the feelings that are coming up,” Frost said in an interview with CURE®.

I don't know why we feel guilty. I wish we didn't. If I could remove any feeling, it would be the guilt. But I think survivor's guilt is a big one [when] continuing to live after you've lost a loved one. There's so much guilt associated with that. How can I possibly find anything joyful when this person has died or, I've survived and they didn't?

So, I think there's a lot of guilt of just living after diagnosis after a death.

Brad died over seven years ago, and it's still something that I struggle with. I'm able to quiet it and I handle it very differently [than I used to]. But it was really prevalent for the first couple of years. I wrote about it, I think I was very open about those feelings, which, again, we don't talk about all of the hard things that we're experiencing in a diagnosis after the death of a loved one. So that felt like therapy of being like, “This is what's going through my head, my heart, my body right now,” and to find other people that felt the same way to be like, “Oh, this is not uncommon. This is not abnormal to feel these feelings.” I think the more that we can talk about and normalize these difficult things, we’re just paving the path and the way for other people [who] are coming later for them to give themselves permission to feel all the feelings that are coming up.

Dana Frost, a cancer survivor and grief advocate, said writing about survivors’ guilt and connecting with others feeling the same way was therapeutic.

Connecting With Others May Help With Survivors’ Guilt

Nurse Tells Patients with TGCT to Speak Out About Pain

Patients with TGCTs, or tenosynovial giant cell tumors, often have to deal with pain and discomfort as a result of the condition, a rare benign tumor that can cause inflammation, pain and joint mobility.

Solange Sierra, APRN, of Sylvester Comprehensive Cancer Center, understands that reality well. In addition to her role as a nurse, for years Sierra dealt with the effects of TGCT as a patient.

“For many years, I was complaining of pain,” Sierra said. “And I was disregarded. I was told that I was crazy by an orthopedic doctor once, and they really did not take me seriously. I don't know if it's because I was a woman. At that age, I was a young woman, I was in my 20s. And I don't know if it was because nobody's familiar with TGCT because it's so rare.”

Sierra eventually received a diagnosis, and treatment via surgery. In a conversation with CURE® as part of the “Speaking Out” video series, she advised patients with TGCT to speak honestly with their care team about the pain they are experiencing.

“Make sure that whenever you see a doctor or a nurse when they're doing your assessment, be honest in [discussing] the pain,” she said. “A lot of the TGCT patients, they've suffered [from] this for so long, that they get used to the pain. And when you have pain from TGCT most of the time, it's something that it's not high enough to take strong medications, but it's strong enough to affect your activities of daily living.

“So mention it, speak about it, don't feel afraid, and once you tell them about your pain, it really can make a difference because there's a lot of things that nurses can teach you about how to manage it. And sometimes patients suffer so much from pain, and they're just afraid of saying that they go on [with] their life living like this and it's not fair. ... It can be very damaging, having these tumors. So speak out and just share everything you feel with the nurses and your doctors.”

Elsewhere in the interview, Sierra discussed her recovery from TGCT surgery, the importance of self-advocacy and finding support, treatment advancements for TGCT such as the oral medication Turalio (pexidartinib) and current clinical trials.

For more information on tenosynovial giant cell tumors (TGCTs), click here: 

Patients with TGCT are encouraged to honestly discuss their pain with their care teams.

No One-Size-Fits-All’ Treatment for Patients with TGCT

Sydney Stern understands the importance of a multidisciplinary care team when treating tenosynovial giant cell tumors, or TGCTs. Stern, Director of Giant Cell Tumor Programs at TGCT Support and the Life Raft Group, received a diagnosis of TGCT at the age of 17, years after first experiencing symptoms and having been misdiagnosed with juvenile arthritis and other issues.

TGCT is a tumor which starts in the tissue around the joints and while not malignant it can cause inflammation, pain and limited joint mobility.

In a conversation with CURE® as part of the “Speaking Out” video series, Stern explained that the ideal multidisciplinary care team for a patient with TGCT would include a medical oncologist and an orthopedic oncologist as well as physical therapists, radiologists and palliative care specialists.

“The majority of patients are diagnosed by orthopedic surgeons in that sports medicine sector, that's the major point of contact when we start a lot of times because [TGCT] resembles a Baker's cyst or a meniscus tear for those of the knee, labral tear for hips,” Stern said. “So, we end up mostly there and what you'll find is there's a delay in understanding of maybe some of the research or dissemination [of information] into those groups.

“And so, getting referred to multidisciplinary teams is really key; one, because there's multiple modalities at this point for treatment. It is not just surgery, but there's also this concept of active surveillance, and I think that's better done at cancer centers which are used to actively monitoring patients over time, whereas the traditional sports medicine doctor may only have 12 weeks with the patient and then they may send them off into the world. So, I think those multidisciplinary teams are more equipped for long-term follow up, as well as the various options that are now available, which are truly patient-centric. There is no one size fits all for everyone. And while surgery at one point was the frontline treatment, there's a slight shift into not just pulling out every tumor you see, but being more thoughtful about the impact later on.”

One expert explains the importance of a multidisciplinary care team for patients with TGCT.

‘No One-Size-Fits-All’ Treatment for Patients with TGCT

TGCT Quality of Life Impact ‘Can Be Quite Similar’ to Cancer

Tenosynovial giant cell tumors, or TGCTs, are non-malignant, but have plenty in common with cancer in terms of impacting patients’ quality of life, as Sydney Stern, director of Giant Cell Tumor Programs at TGCT Support and the Life Raft Group, explained.

“It can be quite similar,” Stern said during a conversation with CURE® as part of the “Speaking Out” video series. “Patients worry if they'll ever be able to have children on these drugs, right? That's a very common concern for patients on systemic therapies with cancer.

“So not only treatments, but also the disease itself can be similar, [with patients] being worried about amputation — while very uncommon at this point in time, patients are worried about it. … A lot of patients are worried about what the future holds for them. A lot of patients with hip disease worry, can they have a baby and carry a baby to term without causing intense amounts of pain, as well as losing your job or missing work because of all the doctor visits or pain itself? So I think some of the experiences are parallel, with complete respect to cancer patients that we don't deal with the life-threatening aspect. And that's important to note, with the exclusion of some locations for TGCT that affects the spine.”

Treatments for both TGCT and cancer, Stern noted, can result in similar side effects, such as nausea, facial swelling, and changes to the skin and hair.

“One thing is there's no metastasis or no concern for metastasis within TGCT, although it can be incredibly debilitating and infiltrative to the local joint area,” Stern said.

Stern also stressed that patients shouldn’t be concerned about their case of TGCT becoming malignant over time.

“The prevalence of those with a malignant form [of TGCT] are so unbelievably beyond under 1% that it's really hard to capture that group,” Stern said. “Personally, I deal with thousands of patients, I've actually only seen one patient in a country where I'm not entirely sure if they have the means to detect truly if that's what they have versus a different disease or truly have just sarcoma to start. But I will say is it's exceptionally rare, so rare that I tell patients, ‘Please don't worry.’”

TGCT is a non-malignant tumor, but one expert explained how it can similarly affect patients.

Explaining TGCT, the Rare Tumor Causing Pain and Limited Joint Mobility

There are not many patients with tenosynovial giant cell tumors, or TGCTs, with one expert telling CURE® that “about one in 1 million patients” will be affected by the condition.

The condition can cause inflammation, pain and limited joint mobility. As part of the “Speaking Out” series, Dr. Gina D’Amato, a professor of medicine at the Sylvester Comprehensive Cancer Center, explained the cause of TGCT and how it can impact patients’ lives.

“There's a difference between benign and malignant — benign means that it does not have the ability to spread to other organs and be life-threatening, where malignant can spread to other organs and be more life-threatening — so, it's a benign tumor that is a rare tumor, it's in the subtype of connective tissue tumors,” D’Amato said. “It starts out in the connective tissue around the joints, so it starts out from synovial fluid. And there's a specific gene mutation that occurs and what happens is, there's a cluster of abnormal cells that then bring inflammatory cells to the tumor, and then it causes a lot of inflammation, pain and joint dysfunction, a lack of range of motion.

“So, [it] usually occurs in patients between the ages of 20 and 40, [with a] slight predominance [among] females, but it can affect men as well. And the most common joint is the knee, but it can affect other joints, like the hips or the hands or the feet. So, it's rare, about one in 1 million patients will get it. … The cure of the of the tumor is surgery, but unfortunately, oftentimes it will recur and then affect quality of life of patients.”

During the conversation, D’Amato also discussed advancements in TGCT awareness and treatment over the past two decades, but noted that the relative rarity may result in a lack of awareness for both patients and providers, leading to misdiagnoses or delayed diagnoses, while

disparities in access to and affordability of healthcare can also lead to patient disadvantages.

Among recent advancements noted by D’Amato were the findings of the phase 3 MOTION trial, presented earlier this year at the American Society of Clinical Oncology (ASCO) annual meeting, evaluating the drug vimseltinib among patients with TGCT.

“Patients were randomized to receive in vimseltinib versus placebo, and it showed that the treatment improved pain, quality of life, range of motion function,” D’Amato said. “So it's a very effective drug and it was well-tolerated. So, it’s likely that drug will become FDA approve within the year, I would say within a year.”

This program was made possible with support from Deciphera. For more information on tenosynovial giant cell tumors (TGCTs), click here: 

Tenosynovial giant cell tumors are not malignant but can impact patients’ quality of life, as one expert explained.

‘You Have More Options’: Treatment Beyond Surgery for TGCT

Sydney Stern has undergone six surgeries for TGCT, or tenosynovial giant cell tumors. “So, we’ll say [that’s] five too many, maybe,” she told CURE®.

Stern, director of Giant Cell Tumor Programs at TGCT Support and the Life Raft Group, noted that there is no current standard of care for TGCT, a rare and benign tumor which starts in the tissue around the joints.

“Frontline [treatment] is surgery, in most cases,” she said. “That's shifting a little bit with the more options that become available and [as] some active surveillance starts to become [at the] forefront for patients that may not be symptomatic. But generally, [treatment] is patient-guided in the best cases, because they're given all their options immediately upon diagnosis. And that doesn't typically happen. The majority of patients are told, ‘You have a tumor, let's remove it,’ and it's not even discussed, whether you're symptomatic or not.”

In 2019, the Food and Drug Administration approved Turalio (pexidartinib) as the first TGCT therapy, and there are additional treatments currently subject to clinical trials, as experts told CURE® as part of the “Speaking Out” series. TGCT, the agency noted in its announcement of the approval, is a rare tumor affecting the synovium, or the thin layer of tissue covering the surfaces of the joint spaces, and the tendon sheaths, the membranes that cover tendons connecting muscle to bone.

“Upon diagnosis, the majority of patients have had symptoms for quite a long time before they reached a provider,” Stern explained. “The typical United States insurance system would have you [first] do [physical therapy] or have radiographic scans, which would miss tumors. Sometimes patients have a lengthy delay in diagnosis, and that high rate of misdiagnosis likely due to provider unfamiliarity, to be honest, and then long retention rates with doctors who may not be best suited to treat those patients.

“So once you've sorted through a long time with symptoms, potentially misdiagnosis on the way, maybe being treated by someone who's not part of a multidisciplinary team at a referral center, finally, when you get to a referral center, life is much smoother. You have more options: systemic therapies, active surveillance or surgery. … But the time it takes to get somewhere else sometimes is a lifetime for many patients.”

Systemic therapy and active surveillance can be viable options for patients with TGCT, as one expert explained.

Talking about the good, bad and ugly aspects of cancer on social media is “the most healing part of this community,” a survivor said.

Having a Cancer Community on Social Media Can Be Healing 

When it comes to cancer, sharing the good, bad and ugly on social media allows the community to heal together, a metastatic breast cancer survivor and comedian told CURE®.

It’s important to have the ability to share all aspects of cancer on social media “because the bad and the ugly will suffocate you to where you can’t see the good anymore,” said Annie Bond during an interview with CURE®.

Bond is a comedian, metastatic breast cancer survivor and cancer advocate who shares her experiences with cancer on social media platforms such as TikTok and Instagram.

She noted that life with cancer “can be shocking, and it’s so different,” also explaining that it can be lonely because “even these friends and people I’ve been able to depend on for so long don’t really know who I am anymore — they don’t treat me the same anymore.”

But, having a cancer community on social media who can truly empathize with the darker moments has been “the most healing part of this community,” Bond said.

Sharing Breast Cancer Experiences is the ‘Most Special Thing’

Recently, Bond discussed her experience with post-traumatic stress disorder (PTSD) on social media, explaining that it takes “work and self-reflection” to heal.

Bond spoke with CURE® about why having a cancer community on social media can be healing and relatable, even when experiencing mental health effects, such as PTSD.

I made a video recently just talking about PTSD and how with cancer, it's not like there's one event — it really becomes a lifetime of continued trauma. And continuous things that we are now [having, like] a new fear or now there's this new thing we're dealing with. And that is a traumatic event that we've all been through.

It takes a lot of work and knowledge and self-reflection to figure out what the best healing is for you. I know it took me a long time to do it. And I have done so many different types of therapy. But I'm just as proud of myself for how much I've worked on my mental health, for my own sake [and] for the people I love [than] about the fact that I've survived this disease because I feel like I had nothing to do with that. That's just luck. And I just did what they told me and got the right doctors.

But the other stuff I did have some control over. And so, I took it back and I was like, “You know what? My life is gonna be magical and wonderful. And cancer cannot take that away from me.”

Josie Montegaard, MSN, AGPCNP-BC, and Yuliya Linhares, MD, provide advice for patients with CLL on managing their diagnosis and treatment.

Getting the Most From Your CLL Care Team

Video content above is prompted by the following question(s):

Do you have any advice for patients and their caregivers about how to work with their health care team to ensure best outcomes?

Why is it important for patients with chronic lymphocytic leukemia (CLL) to have a support network in place?

How and when should patients reach out to their health care team about treatment adverse effects or any changes in how they’re feeling?

Do you have any additional advice or key takeaways for patients as they manage their CLL diagnosis and treatment?


Josie Montegaard, MSN, AGPCNP-BC, and Yuliya Linhares, MD, conclude their discussion with advice for patients with CLL on managing their diagnosis and treatment.

Videos

How a Prostate Cancer Diagnosis Can Impact Patients’ Mental Health

3 Ways a Survivor Manages Scanxiety After Metastatic Breast Cancer

Connecting With Others May Help With Survivors’ Guilt

Nurse Tells Patients with TGCT to Speak Out About Pain

‘No One-Size-Fits-All’ Treatment for Patients with TGCT

TGCT Quality of Life Impact ‘Can Be Quite Similar’ to Cancer

Explaining TGCT, the Rare Tumor Causing Pain and Limited Joint Mobility

‘You Have More Options’: Treatment Beyond Surgery for TGCT

Having a Cancer Community on Social Media Can Be Healing

Getting the Most From Your CLL Care Team

Latest News