34: Healing Below the Belt: The Missing Piece in Cancer Care with Alex Hill

"We have to do better for our patients." – Alex Hill

Episode Summary

In this enlightening conversation, Kristen Parise speaks with Alex Hill, a specialized pelvic health and oncology physiotherapist, about the critical yet often overlooked connection between cancer treatment and pelvic health. Alex shares her journey into this specialized field, the importance of lymphedema management, why exercise during cancer treatment is essential, and how healthcare providers can better serve cancer survivors through improved education and collaborative care. This episode offers valuable insights for healthcare professionals, cancer survivors, and anyone interested in comprehensive cancer care.

Chapters

• 00:00 - Introduction to Pelvic Health and Oncology
• 02:18 - Alex's Journey into Pelvic Health and Oncology
• 05:24 - Understanding Lymphedema and Its Treatment
• 10:45 - The Importance of Exercise During Cancer Treatment
• 14:32 - Addressing Hormonal Changes and Pelvic Health
• 19:45 - Education and Collaboration in Oncology Rehabilitation
• 24:40 - Late Effects of Cancer Treatment
• 30:24 - Connecting with Alex Hill

Alex's Path to Pelvic Health & Oncology

Alex's journey into this specialized field combines professional curiosity with personal experience:

• Discovered pelvic health and oncology during PT school clinical rotations
• Minimal formal education on these specialties (only a few hours in a 3-year doctoral program)
• Personal history with misdiagnosis fueled her passion for patient advocacy
• Currently practices in both hospital and private settings through OncoPelvic PT
• Focused on validating patient experiences that are often dismissed

"I had one orthopedic surgeon tell me that it was in my head and it ended up being an actual labral tear... I have felt not heard when I was in pain and I knew something was wrong with my body."

Understanding Lymphedema: Beyond Cancer

Lymphedema is one of the most common yet misunderstood side effects in cancer care:

What It Is

• Buildup of protein-rich lymphatic fluid that doesn't resolve without treatment
• Different from typical swelling (like a sprained ankle)
• Can affect specific body areas based on lymphatic system damage

Common Causes

• Lymph node removal during cancer surgeries
• Radiation therapy damage to lymphatic vessels
• Some cases develop from congenital lymphatic system issues

Treatment Approach

• Complete Decongestive Therapy (gold standard treatment):
  • Compression bandaging and garments
  • Manual lymphatic drainage massage techniques
  • Specific therapeutic exercises
  • Comprehensive skincare regimen to prevent infection

Access Challenges

• Approximately one certified lymphedema therapist per 1,000 patients who need treatment
• Even fewer therapists specialize in genital lymphedema

Exercise During Cancer: Myth-Busting

Alex passionately advocates for appropriate physical activity throughout cancer treatment:

Old Misconception

• Cancer patients should rest and avoid physical activity

Current Evidence

• Exercise improves treatment outcomes
• Helps manage treatment-related fatigue
• May reduce cancer recurrence rates
• Safe even for patients with metastatic cancer (with proper modifications)

Clinical Considerations

• Timing matters (avoid 2 hours before/after radiation or chemotherapy)
• Monitor blood counts and adjust intensity accordingly
• Telehealth options for high-fatigue days
• Individualized programming based on specific needs

"If we as providers under-dose exercise, we are part of the problem. We have to really look at what our patient needs who's in front of us and individualize their plan of care."

Hormonal Changes & Pelvic Health

Cancer treatments frequently cause significant hormonal disruptions with profound pelvic health impacts:

Common Triggers

• Tamoxifen and other hormone therapies
• Chemotherapy-induced menopause
• Surgical removal of ovaries or testes

Resulting Pelvic Health Issues

• Vaginal dryness and atrophy
• Pain with intercourse
• Tissue fibrosis (especially after radiation)
• Pelvic floor muscle dysfunction

Therapeutic Approaches

• Dilator Therapy
  • Medical devices in graduated sizes
  • Maintains vaginal tissue flexibility
  • Enables comfortable pelvic examinations
  • Supports sexual function recovery
• Pelvic Floor Rehabilitation
  • Often focuses on relaxation rather than strengthening
  • Addresses trauma responses in the nervous system
  • Retrains coordination and function

"A lot of times we'll need to work on relaxing the pelvic floor, getting it more coordinated before we then start strengthening if we do need to do that."

Understanding Radiation Fibrosis

Alex provided a clear explanation of how radiation affects tissues:

• Radiation can be delivered externally or internally (brachytherapy)
• Creates a "scattering effect" that impacts surrounding tissues
• Results in scarring, hardening and thickening of tissue (fibrosis)
• Reduces tissue flexibility and elasticity
• Can cause pain with movement, urination, bowel movements, and sexual activity
• Early intervention helps minimize progression

Timeline of Treatment Effects

Cancer treatment effects follow distinct patterns that patients should understand:

Acute Effects

• Occur during active treatment
• Often anticipated and addressed in treatment plans

Long-Term Effects

• Continue beyond the treatment period
• Example: Persistent fatigue or neuropathy

Late Effects

• Develop months or years after treatment ends
• Often unexpected and psychologically challenging
• Examples:
  • Lymphedema (can appear up to 15-20 years post-treatment)
  • Progressive fibrosis
  • Cardiac or pulmonary toxicity
  • Sexual dysfunction

"It just kind of kicks you when you're down. You're out from treatment, you're done, you're maybe going to the oncologist just for your yearly checkup and then like, bam... It's still coming back for you with these other late side effects."

Healthcare Provider Education & Collaboration

Alex emphasizes the importance of improved education and team approaches:

Current Gaps

• Minimal pelvic health and oncology training in most medical and rehabilitation programs
• Lack of automatic referral pathways for pelvic cancers (compared to breast cancer)
• Providers often uncomfortable discussing intimate health concerns

Progress Being Made

• Rehab specialists now included in tumor board meetings at some hospitals
• Increasing integration of rehabilitation into cancer centers
• More evidence supporting early intervention

Ideal Approach

• Baseline assessments at diagnosis
• Ongoing monitoring throughout treatment
• Regular follow-up to catch late effects early
• Collaborative care among oncology, primary care, and rehabilitation specialists

"We as healthcare providers have to do better for our patients besides only focusing on, for example, like the scar tissue or the lymphedema or the shoulders."

Resources & Mentions

• OncoPelvic PT - Alex Hill's practice and educational platform
  • Resources for cancer survivors
  • Blog with evidence-based information
  • Continuing education courses for clinicians
• Complete Decongestive Therapy (CDT) - Gold standard treatment for lymphedema
  • Lymphology Association of North America - Certification and information
• Vaginal Dilators - Medical devices for maintaining vaginal health
  • Intimate Rose (widely recommended brand)
  • Soul Source (silicone options)
• Professional Organizations:
  • Academy of Pelvic Health Physical Therapy
  • APTA Oncology
  • Lymphology Association of North America
• Alex's Theme Song: "Get Back Up Again" from Trolls - Representing her optimistic approach to challenges

Connect with Alex Hill:

• Website: OncoPelvic PT
• Social Media: @OncoPelvicPT on all platforms
• Monthly newsletters available for both healthcare providers and patients

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