Update: dad went to ER where gastroenterologist did colonoscopy and endoscopy and cauterized wounds but was concerned about a narrowing in rectum where he couldn’t get his camera through. He had a cat scan and biopsy in a few areas. We don’t know results yet. He had a pet scan 3 weeks ago which indicated no cancer but it did show “possible diverticulitis “ or something like that.
While in hospital a surgeon came in and said he may have to have surgery to remove part of colon that has radiation damage , due to stricture. I have no additional info at this point. My dad is so down. He doesn’t want to go through a major surgery. We really don’t know our options at this point but the fact that a surgeon came in makes me very worried. . We have to talk to the gastroenterologist once he has the biopsy results back to understand our options. My biggest question is whether he can try less invasive approaches first. Whether he could have dilation procedure? We jumped into radiation too quickly; I don’t want dad making this decision without major consideration and second opinion etc.
If you are still reading this, thank you. I am angry that he had radiation; we should have asked more questions then. I am so upset. If anyone has any experiences to share especially if there are less invasive approaches here I would really appreciate❤️. I’ve hardly remembered it’s Christmas today, merry Christmas everyone.
=======
Radiation proctitis. Anyone who can share their experiences? my dad, 84, just got diagnosed. Rectal bleeding and now blood count going down. (8). Just got his Lupron and PSA is .17; this has been going down since diagnosis. He also had several rounds of radiation this time last year.
Two weeks ago had petscan which was clear other than showing this inflammation, I think it read possible proctitis or diverticulitis on the scan. His gastroenterologist wants to do a colonoscopy and then treat it that way. (?) But now that his blood count is low they are telling him to go to ER because his regular doc can’t get him in. I am scared… I keep reading it is not recommended to get a colonoscopy within a year of radiation. Can anyone share experiences and what we may expect? How does treatment work by doing a colonoscopy? My poor dad has just had terrible side effects from this radiation from day 1. Thank you in advance.
Written by
alysona828
To view profiles and participate in discussions please or .
I put your post into the AI and here is the answer. Please check for mistake:
I'm sorry to hear about your dad's situation. Radiation proctitis is a known complication of pelvic radiation therapy, and it can indeed lead to rectal bleeding and anemia due to chronic blood loss. Here’s some general information and suggestions based on similar cases:
Immediate Concerns
1. Low Blood Count (Hemoglobin of 8):
This is quite low and may require intervention, such as:
Blood transfusion if symptoms (e.g., fatigue, dizziness) are severe.
Iron supplementation (oral or IV) to improve anemia over time.
Close monitoring by a hematologist or oncologist is essential.
2. Colonoscopy After Radiation:
While it is true that performing a colonoscopy within a year of radiation can carry risks (e.g., perforation or worsening inflammation), it may still be necessary if:
The bleeding source needs to be identified definitively.
Other conditions like diverticulitis or colorectal cancer need to be ruled out.
The gastroenterologist may use a flexible sigmoidoscopy (less invasive) instead of a full colonoscopy to minimize risks.
Radiation Proctitis Management
Treatment depends on the severity of symptoms:
Mild Symptoms:
Stool softeners or fiber supplements to reduce strain during bowel movements.
Topical treatments (e.g., hydrocortisone suppositories, mesalamine) to reduce inflammation.
Moderate to Severe Symptoms:
Endoscopic Treatments:
Argon plasma coagulation (APC) or laser therapy to cauterize bleeding vessels.
Medications:
Sucralfate enemas to coat the lining and promote healing.
Anti-inflammatory or steroid enemas.
Hyperbaric Oxygen Therapy (HBOT):
Helps improve oxygenation and healing in damaged tissue, though it requires specialized facilities.
Next Steps
Emergency Care for Anemia:
Since he’s being directed to the ER, they may stabilize his blood count and address immediate bleeding concerns. A hematology consultation might follow.
Discuss Risks of Colonoscopy:
Ensure his gastroenterologist is aware of the radiation history and considers alternatives like flexible sigmoidoscopy or imaging.
Dietary Adjustments:
Low-residue diets can reduce bowel irritation. Avoid spicy or acidic foods, which may exacerbate symptoms.
Long-Term Management:
Consider consulting with a radiation oncologist or specialist in radiation side effects for tailored treatments like HBOT.
Support and Encouragement
It's clear your dad has been through a lot, and it’s emotionally taxing for you as well. Stay in close communication with his healthcare team, and don't hesitate to ask for second opinions if you're unsure about recommended procedures.
Let me know if you'd like help understanding specific treatments or options further.
thank you! Wow, AI is pretty impressive. Appreciate you looking this up and responding. It worries me I’m not getting a lot of responses as maybe this just isn’t that common.
If they did a pet scan just recently can we rule out rectal or colon cancers? Would you be able to see that on. PET scan?
You're very welcome! I hope your dad finds relief soon. To answer your question: a PET scan can sometimes detect rectal or colon cancers, but it has limitations depending on the situation. Here's a breakdown:
PET Scans and Colon/Rectal Cancer
1. How PET Scans Work:
PET scans detect areas of high metabolic activity, often indicating cancer. However, inflammation (like radiation proctitis or diverticulitis) can also "light up," which might make it hard to distinguish cancer from non-cancerous conditions.
2. For Rectal or Colon Cancer:
If the PET scan was clear in the rectal/colon area, it significantly reduces the likelihood of a large or advanced cancer being present.
Early-stage cancers or flat lesions may not always be detected on PET, as their metabolic activity may not be high enough to show.
3. Colonoscopy's Role:
A colonoscopy allows direct visualization and biopsy of suspicious areas, which is the gold standard for diagnosing or ruling out colon and rectal cancers.
In your dad's case, the colonoscopy is likely being considered to definitively exclude malignancy and assess the extent of the proctitis or any other conditions contributing to his symptoms.
Why Responses May Be Few
Radiation proctitis isn't as common or well-discussed, especially in older individuals, as many cases resolve or are mild. Severe cases like your dad's may not come up as often in general discussions, making online responses sparse.
Next Steps
If you’re unsure about the necessity of a colonoscopy, consider asking his doctor about other imaging options, such as MRI or CT with contrast, to evaluate the bowel without direct scope insertion, given the risks.
Feel free to reach out with any further concerns or if you'd like more information on this topic. You're doing great advocating for your dad!
Thank you so much ❤️ dad going in hospital today. I feel like every holiday we are dealing with something (it was this time last year that he started treatment). But I hope this will help him start feeling better.
He consulted with a gastroenterologist after experiencing rectal bleeding. She recommended a colonoscopy to check for cancer and radiation proctitis. It was a few months short of a year since his proton radiation treatment. He has a genetic variant that puts him at a slightly higher risk for colon cancer.
He had a 2cm pre cancerous polyp removed and radiation proctitis was confirmed and treated with APC during the colonoscopy.
He is supposed to have a follow up colonoscopy in a year.
His rectal bleeding has returned and he is going to be scheduled for a sigmoidoscopy in the next few weeks with possible 2nd APC treatment.
His hemoglobin is slightly low (12.9)
His medical oncologist recommended he take an iron supplement .
He was also advised to go to the ER if he had significant bleeding, but thankfully it has not been too profuse.
Thank you for sharing your experience—it highlights some of the complexities and challenges of managing radiation proctitis alongside a cancer history. It sounds like you and your husband have been proactive, which is key in navigating this condition. Here's a reflection on your situation:
Insights from Your Case
1. Colonoscopy for Dual Purposes:
Detecting and removing the precancerous polyp was essential, especially given the genetic predisposition. This shows the importance of balancing the risks of post-radiation procedures with the need for cancer screening.
Radiation proctitis and polyp removal were successfully addressed during the first colonoscopy, which is encouraging.
2. Recurrence of Rectal Bleeding:
Radiation proctitis can be a chronic issue, and repeat treatments like APC are sometimes necessary to manage symptoms.
The decision to proceed with a sigmoidoscopy and possible second APC treatment seems appropriate given the recurrence of symptoms.
3. Low Hemoglobin (12.9):
While not critically low, it's a sign of ongoing blood loss or insufficient recovery from earlier bleeding episodes. The iron supplement should help replenish iron stores and support red blood cell production.
4. When to Go to the ER:
Keeping an eye on significant or worsening bleeding is crucial. Thankfully, it seems manageable right now, but monitoring stool color (black or tarry stools may indicate upper GI bleeding) and frequency of bleeding episodes is important.
General Recommendations for Recurring Radiation Proctitis
Alternative Treatments Beyond APC:
If the bleeding persists despite APC, your husband might explore other options like:
Sucralfate enemas: Coats the rectal lining and promotes healing.
Hyperbaric Oxygen Therapy (HBOT): Enhances tissue healing, though it may not be widely available.
Anti-inflammatory medications: Mesalamine or corticosteroid enemas might reduce inflammation and bleeding.
Dietary Adjustments:
A low-residue diet can minimize irritation and bowel strain, which might help reduce bleeding episodes.
Routine Monitoring:
Following up with the gastroenterologist and oncologist as planned ensures timely interventions and adjustments to his care plan.
Your shared experience could provide valuable support to others dealing with radiation proctitis. If you or anyone in similar situations needs additional insights or advice, feel free to ask!
I’m guessing that he will get another APC treatment during his scope… I am encouraging him to try some other treatments as well … his radiation provider expressed some concerns about APC as it can cause non healing sores…
I see. Therefore you don't really know if that lesion is PSMA positive or negative. Maybe not even a prostate cancer? Hope they will find it out in order to get the best treatment strategy.
Is the polip the only thing what they found with the endoscopy?
I was myself thinking to ask for barium contrast during the PSMA pet/investigational CT in order to pick up any cancer lesion. Again one young doctor (a registra) said about that to me more than six years ago when I had my PSMA pet CT scan but the lady performing the scan said to me that the young doctor is confused.
Most important is that you are diagnosed properly and receive the appropriate correct treatment. I am not a doctor.
Question. I know they will confirm during the colonoscopy but would the pet scan he had earlier this month have showed another cancer (ie colon or rectal) if that’s what it was? The notes from the pet scan said “possible diverticulitis or proctitis” or something like that.
It sounds like a helpful and compassionate conversation is happening. You're raising critical points about diagnostic accuracy and the importance of finding the right treatment strategy. Here are some key clarifications and suggestions based on the exchange:
Key Takeaways:
1. PSMA PET and Proctitis:
A PSMA PET/CT scan is primarily used to detect prostate cancer metastases or recurrences.
Proctitis inflammation or rectal bleeding might not show as PSMA-positive unless prostate cancer directly involves or metastasizes to that area, which seems unlikely here given his treatment history and recent findings.
2. Endoscopy Findings:
If the precancerous polyp was the only abnormality found during the first endoscopy, it's a good sign that there’s no evidence of malignancy.
A follow-up scope (sigmoidoscopy) is a logical next step to confirm that the bleeding is from radiation proctitis and not a new or missed lesion.
3. Bleeding and APC Risks:
While APC is effective for many, repeated treatments can lead to complications like ulcers or non-healing sores. It’s worth considering alternative treatments if bleeding persists after another APC session.
Suggestions for Further Management:
1. Diagnostic Approach:
If there’s concern about missed lesions, consider advanced imaging like an MRI with contrast or revisiting CT with barium contrast for a clearer view of the bowel.
2. Treatment Options Beyond APC:
Sucralfate enemas or corticosteroids might help reduce inflammation and bleeding.
Hyperbaric oxygen therapy (HBOT) remains a strong option for promoting tissue repair, though accessibility can be an issue.
3. Monitoring Bleeding:
Frequent hemoglobin checks can help determine if the bleeding is significant enough to require intervention.
Stool softeners or a low-residue diet can minimize mechanical irritation of the bowel.
4. Second Opinion:
If uncertainty about diagnosis or treatment persists, consulting with a specialist in radiation late effects (e.g., a radiation oncologist or a GI specialist with this expertise) might bring clarity.
Your advocacy for comprehensive diagnosis and effective treatment is crucial. I hope your husband's care team finds the optimal strategy to manage his symptoms soon! Let me know if you'd like any additional guidance.
Procititis I strongly believe, from IMRT 19 yrs ago. I have supposedly signs of long-term radiation effcts from two urologists and my present MO. I'm seeing a new Radiation Onconogist Jan 3rd 2025. Would he(Rad Onc) consider a new PET and or 68Ga-PSMA-18 PET scan? First PSMA was Aug 2019, that's what put me in Adv PCa St IV w/ mets. I'm castrate resistant, not more Lupron and taking only 250mg Abiraterone since Aug 20019. Urethral burning, inflamation, irritation. Plus I have to self-cath 7-8X per day.
I am not a doctor but try to find a good radiation oncologist and maybe even ask for a second opinion like from Dana Farber cancer institute online if you can't go to Boston. I believe that hyperbaric oxygen chamber could help you but ask Dana Farber radiation oncologist for advice they may be able to help you with advice better than us here.
Your advice is thoughtful and supportive, especially recommending consultation with a renowned institution like Dana-Farber. Here's some additional insight based on what depotdoug has shared:
Points to Consider:
1. Urethral Symptoms and Long-Term Effects of Radiation:
Symptoms like burning, inflammation, and irritation are common long-term side effects of IMRT, compounded by the need for frequent self-catheterization. These issues often require a multidisciplinary approach, involving a urologist, radiation oncologist, and perhaps even a pain management specialist.
2. Hyperbaric Oxygen Therapy (HBOT):
HBOT can help with radiation-induced tissue damage by improving oxygenation and promoting healing. It’s a reasonable option to explore, especially for chronic radiation proctitis or urethral inflammation.
3. Follow-Up Imaging:
Considering their advanced PCa status and history of metastasis, a new 68Ga-PSMA PET scan or similar advanced imaging could be beneficial to evaluate current disease status and guide treatment.
4. Second Opinions:
Consulting institutions like Dana-Farber is an excellent suggestion, especially for advanced cases where a second opinion could provide more nuanced treatment options.
Recommendations for depotdoug:
1. Discuss HBOT:
Ask the new radiation oncologist if HBOT is a suitable option for chronic inflammation and radiation effects.
2. PSMA PET Scan:
Inquire about updated PSMA imaging to check for disease progression or new metastatic sites.
3. Multidisciplinary Approach:
Collaborate with urologists and oncologists to address both the cancer and quality-of-life symptoms like urethral burning.
4. Advanced Care Institutions:
Exploring care at a comprehensive cancer center (like Dana-Farber, Memorial Sloan Kettering, or MD Anderson) could provide access to newer treatments or clinical trials.
Would you like me to draft specific questions or concerns depotdoug could bring up with their care team?
A. Here’s a list of tailored questions and concerns depotdoug could discuss with their care team to ensure a thorough evaluation and optimal management:
---
For the New Radiation Oncologist:
1. Imaging and Disease Assessment:
"Would a new 68Ga-PSMA PET scan or updated imaging help evaluate my current disease status and guide future treatment strategies?"
"Are there any other advanced imaging techniques that you recommend at this stage of my cancer?"
2. Radiation-Induced Symptoms:
"Could my urethral burning and inflammation be related to late effects of IMRT? If so, what are the best strategies to manage these symptoms?"
"Would hyperbaric oxygen therapy (HBOT) be a viable option to address long-term radiation damage?"
3. Treatment Adjustments:
"Given my castrate-resistant prostate cancer and current symptoms, are there any new treatments, clinical trials, or targeted therapies that I should consider?"
---
For the Urologist:
1. Urethral Symptoms:
"Are there specific treatments or interventions to reduce burning, inflammation, and irritation caused by frequent self-catheterization?"
"Is there any risk of chronic scarring or further complications from self-catheterization? How can these risks be minimized?"
2. Alternative Approaches:
"Would a urinary stent or other minimally invasive options help reduce the need for frequent self-catheterization?"
"Should I be screened for infections or other underlying issues contributing to these symptoms?"
---
For the Medical Oncologist:
1. Medication Review:
"Since I’ve been on abiraterone for over four years, is it still the most effective therapy for my castrate-resistant prostate cancer? Are there alternative AR-targeting agents or combination therapies to consider?"
"Should I continue on the same dosage (250 mg) of abiraterone, or would adjustments be beneficial?"
2. Managing Side Effects:
"How can my hemoglobin levels and general health be optimized, given my advanced disease and treatment history?"
---
For a Second Opinion Institution (e.g., Dana-Farber):
1. Expert Evaluation:
"What are your recommendations for managing long-term side effects of radiation therapy, including my urethral symptoms and inflammation?"
"Is hyperbaric oxygen therapy or any other advanced treatment modality appropriate for my case?"
2. Disease Management:
"Are there new systemic therapies, immunotherapies, or clinical trials that could be effective for my stage IV castrate-resistant prostate cancer?"
---
Preparation Tips:
Symptom Journal: Maintain a log of symptoms (e.g., burning, catheter frequency, bleeding) to provide detailed information.
Medical Records: Bring copies of all recent imaging, lab results, and treatment summaries to the appointment.
Questions Prioritized: Highlight the most pressing issues to ensure they're addressed within the time available.
Would you like me to help phrase these questions more concisely or provide any additional context?
Here is the updated advice after I provided your bio to the AI.:
Thanks for sharing depotdoug’s profile. It provides valuable context for refining advice. Here's a more tailored response considering their history and current situation:
---
Key Considerations Based on History:
1. Advanced Prostate Cancer (mCRPC):
Long-standing prostate cancer since 2005 with progression to metastatic castration-resistant prostate cancer (mCRPC) in 2019.
Currently managed with Abiraterone (250 mg/day) and Lupron (interrupted ADT previously but resumed in 2019).
History of PSMA-avid lesions in prostate and lymph nodes, indicating aggressive disease.
2. Cardiac History:
Cardiac arrest in 2011 and reliance on an ICD/pacemaker mean therapies must be carefully selected to avoid exacerbating cardiac issues (e.g., ADT and Abiraterone can increase cardiovascular risk).
3. Radiation Side Effects:
Chronic symptoms, including urethral burning, inflammation, and frequent self-catheterization, likely stem from long-term effects of IMRT in 2005.
---
Specific Recommendations:
1. Addressing Current Symptoms:
Urethral Symptoms:
Discuss with a urologist whether alpha-blockers (e.g., tamsulosin) or anti-inflammatory medications could reduce urethral irritation.
Ask if further evaluation with cystoscopy or imaging is warranted to rule out strictures or other complications.
Chronic Radiation Effects:
Hyperbaric oxygen therapy (HBOT) could potentially improve tissue healing and alleviate inflammation caused by radiation.
Ask the radiation oncologist about newer options, such as radiofrequency ablation (RFA) or topical treatments for urethral issues.
2. Imaging and Monitoring:
Consider a 68Ga-PSMA PET scan to reassess current disease status, especially given the long gap since the 2019 scan. This could clarify:
Whether new metastases are contributing to symptoms.
Any persistent PSMA-avid lesions requiring targeted therapy.
Discuss with the radiation oncologist if barium contrast-enhanced imaging might provide additional insights during PET-CT.
3. Treatment Optimization for mCRPC:
Abiraterone Dose: The current 250 mg/day dose is less than the standard 1,000 mg/day. Ask if dose escalation or adding another systemic therapy (e.g., enzalutamide) might enhance disease control. Consider cardiac implications when discussing.
Lupron Alternatives: Explore if alternative GnRH analogs (e.g., degarelix) or intermittent ADT might reduce side effects while maintaining efficacy.
4. Cardiovascular Risk Mitigation:
Given the history of cardiac arrest, ensure close monitoring of blood pressure, lipids, and glucose during Abiraterone use (which can worsen metabolic parameters).
Ask about referral to a cardio-oncology specialist for integrated care.
5. Follow-Up and Second Opinions:
Regular follow-up with the radiation oncologist is essential to monitor for late radiation effects. Suggest a 3–6 month follow-up schedule.
Explore second opinions from institutions like Dana-Farber Cancer Institute or MD Anderson Cancer Center to evaluate innovative treatments and clinical trials.
---
Suggested Questions for the Care Team:
Radiation Oncologist:
Could hyperbaric oxygen therapy or any other modality address my chronic urethral symptoms?
Should I have another 68Ga-PSMA PET scan to reassess disease status and guide future treatments?
Urologist:
Are there minimally invasive options to reduce the frequency of self-catheterization?
Should I be evaluated for strictures or other anatomical changes due to long-term radiation effects?
Medical Oncologist:
Is the current Abiraterone dose sufficient, or should it be increased to the standard 1,000 mg/day?
Are there other systemic therapies or clinical trials I should consider for my metastatic castration-resistant prostate cancer?
---
Would you like help organizing this information into a concise document for depotdoug to share with their doctors?
Here is a concise document that depotdoug can share with their doctors:
---
Patient Summary for Medical Review
Name: Depotdoug
Age: 72
Diagnosis: Prostate cancer (initially in 2005, now advanced metastatic castration-resistant prostate cancer - mCRPC, Stage IV)
Current Treatments:
Abiraterone (250 mg/day)
Lupron (ADT)
Prednisone
Relevant Medical History:
Cardiac arrest in 2011; ICD/pacemaker implanted.
History of urethral burning, inflammation, and self-catheterization (7–8 times/day) likely related to long-term effects of IMRT (2005).
PSMA-avid lesions detected in 2019 (prostate, pelvic lymph nodes, abdominal lymph nodes). No recent imaging.
Current Concerns:
1. Urethral Symptoms: Chronic burning, inflammation, and frequent catheterization disrupting quality of life.
2. Disease Monitoring: Last 68Ga-PSMA PET scan was in 2019. No recent imaging to reassess disease status.
3. Treatment Efficacy: Abiraterone dose is less than standard (250 mg/day vs. 1,000 mg/day).
---
Questions and Discussion Points for the Care Team
Radiation Oncologist:
1. Could hyperbaric oxygen therapy (HBOT) or another modality help with long-term radiation effects (e.g., urethral symptoms)?
2. Should we consider a 68Ga-PSMA PET scan or other advanced imaging to reassess disease progression and guide treatment?
3. Are there any new approaches or clinical trials for managing chronic radiation-induced complications?
Urologist:
1. Are there treatments or interventions to reduce urethral burning and inflammation (e.g., alpha-blockers, anti-inflammatory therapies)?
2. Should I undergo further evaluation (e.g., cystoscopy) to check for strictures or anatomical changes due to radiation?
3. Are there options to minimize the need for frequent catheterization, such as urinary stents or other devices?
Medical Oncologist:
1. Is the current Abiraterone dose (250 mg/day) optimal for controlling my mCRPC? Should we consider increasing it to the standard dose (1,000 mg/day)?
2. Are there alternative systemic therapies (e.g., enzalutamide) or combinations to enhance disease control?
3. Given my cardiac history, are there additional precautions or referrals (e.g., to a cardio-oncology specialist) to optimize my care?
Second Opinion Possibilities:
Could institutions like Dana-Farber Cancer Institute or MD Anderson Cancer Center offer insights into novel treatments or clinical trials for mCRPC and long-term radiation complications?
---
Next Steps:
1. Schedule a consultation with the radiation oncologist to discuss imaging and symptom management.
2. Request a urology follow-up to explore solutions for urethral symptoms and catheter dependence.
3. Review systemic treatment options with the medical oncologist to ensure current therapies are optimal.
4. Consider seeking a second opinion from a leading cancer center for comprehensive evaluation.
---
Would you like this formatted for printing or adjusted in any way?
Q. Should they cauterize something if bleeding continue? I assume they should find out first what is actually happening?
A. Yes, you're absolutely right. Before deciding to cauterize, it’s crucial to identify the exact source and cause of the bleeding. Here’s why and how the process typically unfolds:
Why Investigation Comes First
1. Radiation Proctitis vs. Other Causes:
The bleeding could be due to radiation proctitis, but it’s essential to rule out other causes, such as recurrent cancer, undiagnosed polyps, diverticulitis, or vascular malformations.
2. Targeting the Bleeding Source:
Cauterization (e.g., with APC) is an effective treatment but carries risks like ulceration or delayed healing. It should only be done if the source of bleeding is clearly identified and localized.
Diagnostic Steps
1. Sigmoidoscopy or Colonoscopy:
These allow direct visualization of the bowel to locate the source of bleeding. Biopsies can also be taken if there’s suspicion of something more than inflammation (e.g., malignancy or infection).
2. Imaging Studies:
If the source isn’t obvious or there are concerns about broader issues, imaging like MRI or CT (possibly with contrast) may provide a clearer picture.
3. Stool or Blood Tests:
These can help rule out infections or systemic causes of bleeding, especially if the findings on imaging or endoscopy are inconclusive.
When Cauterization May Be Necessary
Significant or Ongoing Bleeding:
If bleeding is severe enough to lower hemoglobin levels significantly or requires transfusions, intervention is warranted.
APC or another method (like bipolar cautery or laser therapy) might be used to seal off the bleeding vessels.
Localized Bleeding Found During Scope:
If the endoscopy identifies an actively bleeding vessel or lesion, cauterization can be done during the procedure.
Risks of Cauterization Without Clear Diagnosis
Unnecessary Damage:
Treating an unidentified source can cause more harm, such as non-healing sores or bowel perforation.
Missed Diagnosis:
If the bleeding isn’t from proctitis, other causes might remain undiagnosed and untreated.
Recommended Approach
1. Diagnose First:
Push for a thorough investigation to determine the source of bleeding before any intervention.
2. Conservative Treatment:
If bleeding isn’t severe, consider non-invasive options like sucralfate enemas, anti-inflammatory treatments, or dietary changes.
3. Discuss Risks of Cauterization:
If cauterization is proposed, make sure the provider explains the risks and why they believe it’s the best option based on the findings.
Would you like a summary of questions to ask the care team before agreeing to cauterization?
Did you report back to the radiation oncologist about the bleeding? How often do you see your radiation oncologist who performed the radiation therapy?
I also had radiation of my prostate two years ago with the MRI Linac Electa Unity Swedish machine and my radiation oncologist want to see me every three months but he said that I can also come every six months what is the usual time to follow up. I have to admit that I neglected that but hopefully see him soon. I don't have hopefully bleeding but I experienced urgency what is very disruptive in my life. If I have to live my place I have to avoid strong espresso coffee and wait until everything settles down.
It would be great if you could give a feedback to your RO by visiting him.
Following up with the radiation oncologist (RO) is an excellent idea, especially when dealing with post-radiation side effects like bleeding or urgency. Radiation oncologists are uniquely equipped to assess and address complications arising from the treatment they provided. Here are some points to consider regarding follow-ups and feedback:
Why Report Back to the Radiation Oncologist?
1. Specialized Knowledge:
The RO is familiar with the treatment plan, dosage, and areas targeted during therapy, which helps them assess whether side effects are expected or unusual.
2. Long-Term Monitoring:
Radiation effects can appear months to years after treatment, so regular follow-ups allow the RO to catch and manage late effects like proctitis or urinary issues early.
3. Coordination of Care:
The RO can collaborate with other specialists, such as gastroenterologists or urologists, ensuring a comprehensive approach to managing side effects.
Typical Follow-Up Schedule
Every 3-6 Months:
This is a common schedule for the first few years post-treatment, depending on the patient’s condition and side effects.
Annually After Two Years:
If the patient is stable with no major side effects, annual check-ins may suffice.
Symptoms to Report to the RO
Bleeding:
Even if already managed by another specialist, the RO should know, as it might influence their advice or future care.
Urinary Urgency or Frequency:
Disruptive symptoms like urgency can sometimes be mitigated with medications, dietary adjustments, or pelvic floor therapy. Reporting these ensures you explore all options for relief.
Other Late Effects:
Fatigue, bowel changes, or new pain should also be communicated.
Proactive Steps
1. Schedule a Visit:
If you’ve missed recent appointments, reach out to your RO to resume follow-ups. Even if you feel stable, it’s good to check in.
2. Log Symptoms:
Keep a record of any bleeding, urgency, or other issues to provide detailed feedback during your visit.
3. Diet and Lifestyle Adjustments:
As you mentioned, avoiding triggers like espresso is helpful. Your RO may also offer insights on managing urgency or dietary recommendations.
Radiation therapy is highly effective but requires long-term care for potential side effects. Keeping your RO in the loop ensures they can help optimize your quality of life moving forward. Let me know if you'd like help preparing for your next appointment!
Yes, it was done 2 years ago in Sydney Darlinghurst NSW Australia by Genesis cancer care. The machine was an MRI Linac Electa Unity Swedish machine. 38 Gy in 5 sitting, I thing it was done in about 2 weeks. I choose SBRT because I have a terminal illness and I didn't want to go 40 times for radiation. I believe SBRT is still not proven for high grade prostate cancer but otherwise it should be fine? What was your Gleason score? Talk to your RO if SBRT is the best solution for you. It tastes long time per sitting. Maybe even up to 1 h long. I talked to someone much younger than us who is curable and he had 25 sitting with the same Electa Unity MRI Linac machine named Ace here in Genesis cancer care in Sydney Darlinghurst NSW Australia. Each sitting was 45 minutes long. He also received monthly firmagon injections plus generic abiraterone plus prednisolone for monthly about 1000 dollars arranged by my medical oncologist professor Anthony Joshua in Kinghorn cancer Centre here in Sydney Darlinghurst NSW Australia.
Seasid, Thanks for your response . My 1st Biopsy result was Negative . My 2nd Transperineal MRI Fusion Biopsy a 16 core showed Six Cores in the target area Gleason 3 +3 = 6 . A 2nd Opinion upgraded two of the six coress to Gleason 3 + 4 = 7
I am currently on active surveillance and considering treatment between two Focal Therapies or SBRT . p.s. I live in Canada and have travelled extensively across beautiful Australia which included trips on The Ghan and The Indian Pacific from Sydney to Perth .-- A great country .
You could arrange a nono knife Focal treatment here in Sydney Darlinghurst NSW Australia by professor Stricker in a St Vincent's private hospital if you are eligible for the procedure. It is not paid by the Medicare but you could even repeat the treatment. It is about 45 minutes long under the general Anesthesia.
Here is a link to the information to professor Stricker St Vincent's private hospital:
Great that you are very well informed about your options if you are eligible. The only concern is that if you are not selected properly than their is a chance of permanent retention. I talked to the urologists and he said that after the nano knife procedure the cancer turned into dead tissue. I believe that it is very important to be properly selected for this procedure otherwise you could end up with the permanent sub public catheter.
Both NanoKnife (irreversible electroporation, IRE) and TULSA-PRO are innovative focal therapies that aim to preserve organ function while effectively treating localized prostate cancer. Here’s a summary of their benefits and considerations:
NanoKnife (IRE):
How it works: Uses electrical pulses to create nanopores in cancer cells, leading to cell death while sparing surrounding structures like nerves and blood vessels.
Successes: Effective in treating localized and some intermediate-risk prostate cancers, including Gleason 4+3. Dead tissue is replaced by scar tissue over time.
Advantages:
Minimally invasive, with low risk of erectile dysfunction or incontinence.
No radiation or heat involved, reducing collateral damage.
Considerations:
Proper patient selection is critical to avoid complications such as urinary retention or needing a suprapubic catheter.
May not be suitable for large tumors or those near the urethra or other sensitive areas.
TULSA-PRO (Transurethral Ultrasound Ablation):
How it works: Delivers high-intensity ultrasound via a catheter to ablate prostate tissue, guided by real-time MRI.
Advantages:
Non-surgical and precise.
Provides controlled ablation zones with less impact on adjacent tissues.
Faster recovery compared to traditional treatments.
Considerations:
Best suited for localized cancer and smaller prostates.
Long-term efficacy is still being evaluated.
Key Points to Keep in Mind:
Both therapies offer alternatives to radical prostatectomy, especially for patients concerned about quality of life.
Proper patient selection by experienced clinicians is critical for minimizing risks.
Discussing potential side effects, such as urinary retention or catheter dependency, with your care team is essential.
If you're exploring these options, a second opinion from a center specializing in focal therapies might help determine your eligibility and optimize outcomes.
Choosing between NanoKnife (IRE) and TULSA-PRO depends on various factors such as tumor location, prostate size, cancer grade, and individual health considerations. Both treatments have distinct mechanisms and risks, and neither is universally "better" in all cases. Here's a comparative analysis:
---
NanoKnife (IRE):
Advantages:
Can target irregularly shaped tumors and those near critical structures (e.g., neurovascular bundles).
Minimally invasive and preserves surrounding healthy tissue due to the non-thermal mechanism.
Particularly effective for localized or small, intermediate-risk cancers (e.g., Gleason 4+3).
Risks:
Requires precise planning; improper placement can damage the urethra or bladder neck.
Risk of urinary retention increases if the treatment impacts areas near the urethra.
Complications like permanent urinary retention or the need for a suprapubic catheter are possible if not performed by experienced clinicians.
---
TULSA-PRO:
Advantages:
Real-time MRI guidance offers high precision during ablation.
Allows for controlled and adjustable treatment zones, potentially sparing sensitive areas.
Especially effective for small prostates or low-grade cancers.
Risks:
A thermal ablation approach may cause collateral damage if not carefully monitored, particularly near the bladder neck or urethra.
Larger prostates or poorly located tumors may increase the risk of complications, including urinary retention.
---
Likelihood of Permanent Urinary Retention:
1. NanoKnife (IRE):
If performed improperly or on a poorly selected patient (e.g., large tumors near the urethra), NanoKnife carries a higher risk of permanent urinary retention due to scarring or damage to critical structures.
Requires an experienced urologist with detailed imaging to ensure safe margins.
2. TULSA-PRO:
Less likely to cause permanent retention when treating smaller prostates or localized tumors.
Thermal injury risks (e.g., urethral damage) are minimized due to MRI-guided precision, but thermal effects still pose a risk if settings are not optimized.
---
Which Is Better?
For precision and nerve preservation: NanoKnife (IRE) may be better, especially for tumors close to sensitive areas like the neurovascular bundles.
For lower risk of permanent urinary retention: TULSA-PRO, with its MRI guidance and adjustable energy levels, might offer a safer profile, provided the prostate is not too large.
---
Recommendation:
Consult a urologist who specializes in focal therapies to assess your prostate size, tumor location, and overall suitability. Proper patient selection and the experience of the treating team are critical to reducing the risk of complications with either approach.
Stereotactic Body Radiation Therapy (SBRT) can be a safer option for avoiding permanent urinary retention compared to NanoKnife (IRE) or TULSA-PRO, but its safety and efficacy depend on patient-specific factors. Here's a breakdown:
---
SBRT Overview:
How it works:
Delivers high-dose radiation to the prostate in 5 or fewer sessions with millimeter precision, minimizing damage to surrounding tissues.
Uses advanced imaging and motion tracking to protect critical structures like the bladder, rectum, and urethra.
Advantages:
Non-invasive and does not require anesthesia or catheterization.
Lower risk of immediate urinary complications (e.g., retention or strictures) compared to focal therapies.
Effective for treating low- to intermediate-risk prostate cancers.
Short treatment duration compared to conventional radiation therapy.
Disadvantages:
Radiation-induced side effects may develop over time, including urinary frequency, urgency, or mild incontinence.
Long-term risks include urethral strictures or rectal inflammation (rare with modern techniques).
---
Risk of Permanent Urinary Retention:
SBRT has a lower risk of permanent urinary retention compared to NanoKnife or TULSA-PRO because:
1. Non-invasive nature: There is no direct trauma to the urethra or surrounding structures, unlike with thermal or electrical ablation methods.
2. Precision: Modern SBRT systems (e.g., CyberKnife, TrueBeam) target the prostate while sparing nearby tissues.
3. Gradual effect: SBRT works by damaging cancer cells over time, allowing the body to adapt, reducing the likelihood of sudden complications like urinary blockage.
However, pre-existing conditions such as enlarged prostate (BPH), urethral narrowing, or prior urinary issues can increase the risk of radiation-induced urinary retention. For patients with a large prostate volume (e.g., >60 cc), SBRT may require pretreatment (e.g., androgen deprivation therapy) to shrink the prostate and reduce risks.
---
Comparison with NanoKnife and TULSA-PRO:
NanoKnife: Higher risk of retention due to the invasive nature and potential scarring.
TULSA-PRO: Risk of thermal damage to the urethra or bladder neck.
SBRT: Safest option among the three for avoiding permanent urinary retention in most cases, though delayed radiation side effects are possible.
---
Recommendation:
SBRT is an excellent option for patients concerned about avoiding permanent urinary retention, especially for those with localized or low- to intermediate-risk prostate cancer. A consultation with a radiation oncologist can help determine whether SBRT is suitable based on your prostate volume, tumor location, and overall health.
A. Fecal urgency can be a challenging symptom, especially after radiation therapy. It's often a result of radiation proctitis, which can cause irritation or inflammation of the rectum, leading to a heightened sense of urgency to have a bowel movement. Here are some approaches to help manage fecal urgency:
Management Strategies:
1. Dietary Adjustments:
Low-residue diet: Reducing fiber intake temporarily may help reduce irritation in the bowel.
Avoid irritants: Certain foods, like spicy foods, caffeine (including espresso), or fatty foods, can worsen urgency.
Small, frequent meals: Instead of large meals, eating smaller, more frequent meals can help with bowel regularity.
2. Bowel Training:
Scheduled bathroom visits: Even if you don’t feel the urge, trying to go to the bathroom at regular intervals (e.g., every 2–3 hours) may help establish a routine.
Pelvic floor exercises: Strengthening the pelvic floor muscles through exercises like Kegel exercises can improve control over bowel movements.
3. Medications:
Antidiarrheal medications (e.g., loperamide): These can help slow down bowel movements and reduce urgency.
Anti-inflammatory medications or enemas: Your gastroenterologist might recommend sucralfate enemas or corticosteroid enemas to reduce inflammation and irritation.
4. Probiotics:
Taking probiotics may help balance your gut flora and improve bowel function, though it's best to discuss this with your doctor first.
5. Manage Stress and Anxiety:
Stress can worsen urgency, so techniques like relaxation, mindfulness, or deep breathing exercises may help.
Next Steps:
If the urgency is significantly impacting your life, it’s worth discussing these symptoms with your gastroenterologist or radiation oncologist. They may recommend further treatments like biofeedback therapy, medications, or adjusting your diet.
Would you like more specific information on any of these strategies?
My experience - recently diagnosed with radiation proctitus from similar symptoms, including the anemia and irregular red blood cells, but no bleeding. Also some pelvic edema. Didn’t manifest until 5 yrs after the radiation treatment though. I’ve learned now this is VERY common for those who have pelvic radiation (like 74%) and I very much empathize with you and your Dad. Frustrating, uncomfortable, and very disruptive to QOL routines.
GI doc did a CT and flexible sigmoidoscopy rather than colonoscopy; somewhat safer and less invasive. Confirmed no malignancy in rectum which was the concern of MO. Treating symptoms with hydrocortisone suppositories and working pretty well for now. Hope you find a good solution and get positive results!
Stats from my research are all over the board on this topic. Couldn’t find the one indicating 75% which stuck in my mind, but this one estimates 60-80% of all patients receiving pelvic and abdominal radiation from all treatments (cervical, prostate, and other abdominal cancers) experience bowel toxicities (acute and chronic). I certainly believe that.
Thanks and in reading the complete article the 60 to 80 % number is for Temporary issues not long term issues. That to me is a huge difference. I was willing to live with some upfront discomfort to enhance the potential for a remission.
As someone who has had prophylactic pelvic radiation I can now attest that I am a “card carrying “ member of that 60 to 80 % club. However I am very thankful to my RO for offering to do that and for suggesting it in the first place.
Uncomfortable as it was at times I now am past that stage. My PSA without ADT has been steady in the 0.05 range. I am 15 or so months post treatment.
I had pretty bad rectal bleeding and urgency to go poop starting about a year after radiotherapy . I was given suppositories for a year, they did nothing and made me miserable (the process not the drug). Went back again and had laser cauterisation. The inside of my colon/bowel was about 4 feet wide on the tv screen in front of me whilst the doc zapped over 100 fissures . He said that petites is like a grazed knee , a scab forms but then any kind of movement be it waste matter it just moving around will scrape the scab off and start it all again .
It was painless and no bleeding since 7 years on . I do still have urgency in the bottom department , can’t predict , good and bad days but I guess happy to be here 10 years on from stage 4 diagnosis .
I hope he gets immediate relief. My hubby had radiation cystitis from September to November. 8 ER visits, 23 nights in he hospital, 5 surgeries and 2 blood transfusions. Lost 27#. It’s been rough and he hasn’t bounced back yet. Complete incontinence too. Good luck - truly hope they can fix it early and totally
I am curious, have any of the individuals discussed Hyperbaric Oxygen treatments with the doctors. I have read that those can help a lot of people in the healing process when the condition seems to persist.
I agree I am interested in this I have read of successes. I don’t know that they offer at the community hospital he is at. But I bet Penn (where he sees his MO) would offer and good to know that this could be a possible option.
Hey I did some search on this, it's inflammation from the treatment I think u know that already. Keep your energy high as neg energy dies affect those you are in cost contact with. Dad is 84 and will have more of a challenge healing but he will heal. There may be some diminished bowel function, but he'll be able to desk with that. Hope this helps. Cheers
alyson828, I spent 12 months of severe rectal bleeding while local Drs tried unsuccessfully all the above treatments. I finally went to Mayo Rochester where a treatment containing formaldehyde stopped the bleeding. That was 2 years ago with no bleeding to date.
Today dealing with urinary and fecal incontenance is the price of my radiation treatments.
I’m not a Dr these comments are from my own experience.
Sorry to hear about your dads condition, I am also suffering from radiation proctitis although perhaps not so severely.
I finished radiotherapy and HDR brachytherapy in March '24, my PSA is currently <0.01. and Red blood cell count is 3.94 10*12/L [4.5 - 6.5]; Below low reference limit, but that's normal for ADT.
I had Nocturia from the beginning and still have it, it doesn't seem to be getting any better and has a debilitating effect on an already very tired 76 year old ADT ravaged body.
I also suffer from constipation as the RT has damaged my bowel, I carry out exercises and walk a lot to encourage bowel movements, seems to help.
About 3 months ago I noticed blood in my stools and checked with my GP, he referred me for a colonoscopy.
The colonoscopy was negative for tumours, but there was some diverticulitis which I've had for 10+ years and hasn't caused any problems since then.
There didn't seem to be any concern about carrying out this procedure 8 months after RT.
Apart from prescribing Laxido there has been no further treatment and I'm still passing blood on a regular (every couple of days) basis, I guess they just expect it to go away.....I don't take the Laxido as I am determined to get through this without such meds.
I'm just hoping that time will heal these conditions but after nearly a year with only worsening conditions I am not optimistic.
Seven years ago at age 62 I had brachy boost. Back in 2019 I started having blood in my stool. It wasn't hemmeroids where the blood is bright red but rather dark red. I was still treated for hemmeroids (I did have a few) but there was another issue. Chronic radiation proctitis. So, in November 2021 I was treated with APC. Unfortunately, the gastroenterologist didn't follow up on my recovery. Apparently there are no pain receptors in the colon! I suffered for weeks with throbbing pain after my 2 or 3 BM's every morning. I needed further APC a few months later because the dark red clots came back. There are no issues now and I'm glad it's all in the past. My Hemoglobin count did dip a bit but it was never an issue.
I had a colonoscopy in August 2018 where nothing was found. Unfortunately, I never asked the doctor (not the same GI) to note any radiation damage.
sucralfate retention enemas help although they are best used preventively. Worked for me after I developed the problem. As an MD I found this treatment in a medical reference I often use (UpToDate). We used to use sucralfate as a very simple treatment for ulcers. I was thankful that it helped me and disappointed that my radiation oncologist didn’t know about this conventional treatment. Too simple an approach perhaps. Anyway, she jotted down the protocol i gave her for future patients. You just take the chalky sucralfate, crush it up in an ounce or less of water, such it up into a 60 cc syringe, get a very small catheter which in inserted a few inches into rectum. Lube up. Lay down on left side. Slowly instill this small amount of fluid and hold it 10 minutes (if possible - I almost never got more than 5 minutes). Then do the business. Discuss this simple treatment with his docs. As long as he does it gently and doesn’t have a perforation or fever (he be in the hospital if the damage were that bad at the moment) shouldn’t be a problem.
I went through 6 weeks of Oxygen thearapy in an enclosed chamber and it stopped my radiation cystitis in my bladder from bleeding Everyone is different though.
Hello, I was looking through posts on radiation proctitus. See many pieces of advice, how did your dad do. I couldn’t find recent posts. Hope he got through it positively.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Radiation effects are they normal
Radiation proctitis....treatment
Early side effects from ADT + radiation
Radiation Therapy 
Advice on radiation treatment?
