One patient with glioblastoma still alive nine years later
by Roselvr on Thu Jan 26, 2012 01:42 AM
Those not knowing what to ask; you can use these as a base to add or edit to fit your diagnosis
1. We know the cancer is Squamous Cell Carcinoma. It was in his right tonsil, right neck and lymph nodes. Are there any other sites (from PET Scan) that show cancer? 2. The cancer in the Lymph Nodes is it also Squamous Cell Carcinoma or is it considered Lymphoma? 3. There are various types of head/neck cancer. Exactly what type of cancer is this so that I can look it up? (example – is it throat?) 4. Is the cancer HPV positive & if so which type of HPV? *Note- more than likely, they can't answer this for a few weeks...usually the biopsy is sent out to differing lab & may take 2-3 weeks before it came back HPV+. 5. How often do you see this type & how many have you treated with my type and location of Cancer? *Note- If not experience ask if there is someone at that location that he would recommend 6. Is his cancer curable? 7. What are the survival rates? 5 year, long term? 8. What are the chances of recurrence or new cancer? 9. We know that he is going to have Chemotherapy and Radiation; can you tell us what Chemotherapy drugs you will use? 10. Will the chemo and radiation be done at the same time? 11. Will he be hospitalized at any point for Chemo/Radiation; or will it be done as an outpatient? 12. Will the Chemo drugs be given by mouth or IV? *Note- you might also add the power port to your method of delivery. 13. What is the approx. recovery time & What do you feel are the most common side effects I can most likely expect? 14. What are his other options for treatment? 15. Will you change the treatment if he is not responding? 16. Is there a clinical trial for this type(s) of cancer? 17. If clinical trial, ask what phase. Also ask if it’s randomized and if placebo given. 18. When the cancer was biopsied, did they do Genetic Tumor Profiling to see if he can do targeted chemotherapy? 19. What type of radiation will he need? How many radiation sessions? A. Do you offer Tomotherapy or Cyber Knife? 20. Can we have a copy of the pathology report and copies of protocol? 21. What is the histology & cell type of the tumor? 22. What is his current prognosis? 23. What is the 5 year prognosis? 24. Does he have any bad prognosis factors? 25. Is follow-up treatment necessary? What does it involve? 26. Will I need a feeding tube and what type of Dr do we need to care for it? *Note- Some use a general surgeon; while others use a gastro 27. We would like to see a nutritionist; do you have someone you can recommend? 28. How do you feel about complimentary therapy such as Vitamin C drips? 29. Will you be the one managing any pain he has? 30. Will I have to come to the office to pick up prescriptions if there is a pain medication change? 31. Since we live in another state, should we look for a pain management Dr in our area? 32. He has been having problems sleeping. Are you able to prescribe something for him to sleep? 33. Do you have a dentist the specializes in evaluating my teeth before treatment starts? *Note- radiation is damaging to the jaw/teeth; some will need teeth extracted & should be evaluated by a dentist that knows what to look for. 34. Do you use a speech pathologist on your team? If not we need to get one that has had radiation experience of the head and neck 35. Do you have a Social Worker that can help me with financial aid and or short or long term disability help?
*Note- If HPV positive in male; female may want to see her GYN to have an HPV test. Males can not be tested for HPV. HPV can be carried for 30 years
by Roselvr on Sun Apr 29, 2012 07:12 PM
Bumping for new patients & caregivers
by stwhite on Wed May 23, 2012 08:53 PM
Thank you, Roselvr, it's very helpful!
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If you were considering traveling for cancer treatment, which headline would you find more interesting?
Destination: HOPE. Cancer care that is worth the trip.
Over 84% of our patients travel to our hospital from another state
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