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.
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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.
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.
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!
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!
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 .
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Radiation Proctitis Tip
Radiation Proctitis - comments from those that have been diagnosed with chronic (>6 months post radiation).
Early side effects from ADT + radiation
