Update on DSRCT Cancer Journey: Seeking Insights
Greetings everyone! I’m a 30-year-old man weighing in at 190 pounds and standing 5 feet 8 inches tall. I don’t smoke and am currently living with DSRCT cancer, classified as no evidence of disease (NED). Many of you might recall my earlier post that sparked significant discussion here. It has now been just over a year since I received my diagnosis, and I remain in this NED status. I have a crucial scan scheduled for Monday, marking the six-month point of being NED if the results confirm this. However, I am eager to gather insights beyond what my medical team offers, as well as develop a list of potential questions to pose during my upcoming consultation. To give you some context, I have undergone two surgeries where multiple organs were removed, including my gall bladder, spleen, portions of my diaphragm, stomach, colon, rectum, liver, and pancreatic tissues. Though the surgeries were deemed R1, the surgeon successfully achieved clear margins in several areas, including the liver, pancreas, rectum, and colon. In terms of treatment, I have completed six cycles of VDC/IE, alongside five cycles of irinotecan and temozolomide, and received 20 sessions of radiation targeting my entire abdominal and pelvic regions. My primary concern lies with understanding the survival statistics for DSRCT, which are notoriously difficult to pin down and can vary vastly based on treatment efficacy and the ability to reach NED. I am curious about my chances of long-term survival and have noticed that my care team hasn't outlined any specific plans beyond the maintenance chemotherapy phase. I’m wondering if there are additional options or strategies I should explore to improve my outcome?
Answers (1)
2/6/2026, 5:30:42 PM
OpenHealth AI
It's great to hear that you are currently classified as no evidence of disease (NED) after your DSRCT treatment. This is a significant milestone, and it’s completely understandable that you’re eager to prepare for your upcoming scan and consultation. Your thoughtful questions about long-term survival and potential next steps show your proactive approach toward your health.
Understanding DSRCT and Long-term Survival
Desmoplastic Small Round Cell Tumor (DSRCT) is indeed a challenging cancer to treat, and survival rates can vary widely based on several factors, including the extent of disease, treatment response, and individual patient factors. Being in an NED status is a positive indicator, but it’s essential to remain vigilant.
Potential Next Steps
Here are some prioritized steps you can take in preparation for your upcoming consultation:
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Prepare Your Questions:
- Ask about the results of your scan and what they indicate about the likelihood of remaining NED.
- Inquire about the long-term survival statistics specifically related to DSRCT and how they apply in your case.
- Request details on what the next steps will be if the scan shows any changes, including any additional treatments or monitoring.
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Explore Maintenance and Additional Therapies:
- Discuss the rationale behind staying on just maintenance chemotherapy and if there are additional treatment options available, such as clinical trials or newer therapies targeting DSRCT.
- Ask if there is a multidisciplinary team (including nutritionists, physical therapists, or palliative care specialists) that you might work with to optimize your health and recovery.
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Understand Monitoring and Follow-up Plans:
- Clarify how often you will be monitored post-scan and what specific symptoms or changes you should be vigilant about.
- Discuss lifestyle modifications or supportive therapies that may improve your quality of life and overall health.
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Consider Psychological Support:
- Ask about mental health resources available to you during this journey. Coping with cancer can be as taxing mentally as it is physically, so consider engaging with a support group or counselor.
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Stay Informed:
- Research and familiarize yourself with the latest in DSRCT treatment options and clinical trials. Organizations like the American Society of Clinical Oncology (ASCO) or the National Cancer Institute (NCI) often provide updated information and resources.
Final Thoughts
Navigating a cancer journey can be daunting, but staying informed and proactive is key. Keeping an open line of communication with your medical team is crucial. Remember, you’re not alone—many others have walked a similar path, and sharing experiences can often yield valuable insights. If you need additional guidance or details on any specific topics, feel free to reach out. Best of luck with your scan and consultation on Monday!
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