Diagnosis:
1. How was your cancer detected?
Answer: After a 1996 (surprise: had never heard of it) dx of MyG, antibody neg. (though tested only on 1st well known antibody), but Tensilon positive, a "classic case," needing Mestinon to breathe, live, large doses., I was given initial CT Thorax, told there was some extra fatty tissue, but not to worry. There was also "something" on my kidney, they decided not to biopsy, and a small cyst on my liver. Then in Nov. 2001, after many years of ICU hospitalizations unable to breathe, I was CTd again, w/ report saying thymoma must be ruled out, and that there was left chest lymphadenopathy. (In hospital NHL was first dx, though w/ planned biopsy not yet done).

2. Did you feel any kind of pain or did you notice a change of your body?
Answer: May I reserve the right to answer all of these questions once I have found out what my proper diagnosis is? I was a nonsrugical candidate given a cervical (non sternum) surgical removal with no pre or post treatment. Everything was done incorrectly in 2001
3. Do you know your staging?
Answer: I am still learning it could be 2A to 4A or 4B (what Ive been told most recently)

4. Do you have a family history of cancer?
Answer: My father died of colon cancer age 53. Multiple members of my family have had cancer. I had pre cancer of the endometrium and a full hysterectomy in my 30s

5. Did you have any kind of surgery before?
Answer: I had more than I could possibly list here. The last was my partial cervical thymectomy in Dec 2001, other than multiple biopsies and hysterectomy and 2 C sections
Treatment:
6. What kind of treatment did you receive (be as specific as possible)
-surgery (was your cancer invasive? which organs where involved?)
Answer: I am still awaiting information as to what kind of treatment if any remains fromme

-chemotherapie ( name the chemo and write down how many rounds you received)
Answer:

-radiation (what dosis did you receive)
-or a different kind of treatment
Answer:

Where there any kind of side effects involved in your treatment?
Answer:
7. Feelings - Emotions
What was your feeling when you heard your diagnosis?
( The answer to this question might be very helpful for all new patients!)
Answer: I was scared particularly because of lymph node involvemnt. I did not realize the seriuosness of it however. Now I feel betrayed. It is avery long story that I will explain later. My husband is typing this as I lie quite fatigued and sleepy.

How did you feel during your treatment
- For example: During chemo you might have felt nausiated
Answer:

8. What was the most difficult part during your treatment
Answer:

9. Where were you treated (name the hospital with the full adress )
Answer: I was handled incorrectly by FoxChase Penn and Jefferson in Philadelphia. I am visitng Moffitt cancer center but eagerly await the opportunity to meet Dr. Loehrer and have requested an appointment with him. They say I should hear in 2 weeks

10. If you can recommend your doctor let us know his/he r name.
Answer: All I can say is that I am eternally grateful to Sue and Joe, Thymoma.de and the opportunity to see Dr. Loehrer. I have not had the privilege of meeting anyone whoknows about thymomas. I even visited Sloan Kettering once, but they always sent meto surgeons due to lung nodules, pneumonia, etc post partial thymectomy, and I have never been a surgical candidate, so i have been continually radiated (not radiation treatment)

11. What tip could you give a new patient?
Answer: see Dr. Loehrer. Do not waste time. Read everything on thymoma.de . Contribute and become a member.

12. What bothered you the most during your treatment?
Answer:

13. What helped you most during this period?
Answer:

14. How're you feeling today?
Answer: I hope I will be able to answer these questions in greater detail in the future
15. Tell us a bit about your check-ups?
- Where do you get your check-ups
- How often do you go for a check up?
- What do they do at your check up?
Answer: Again this remains in the hands of those who will treat me in the future. Phila betrayed me to the point that the 2 surgeons in myprocedure called theother a liar. If I could do anything it would be to correct the line of oncologistswho seem to believe thymomas are lymphomas. I have wasted many years being tested for lymphoma (even though this can very much be associated with thymomas. You need to find a doctor you trust and who understands your every symptom, lab result, slide etc. Anotherthing I do not have besides my husband is family support. If you have family you are blessed. I do have wonderful friends as well.
16. How do you feel before you have to go to a check up
- Are you nervous, relaxed .....
Answer: I am always terrified about what will be found wrong with me next. There is very much wrong with me. I have Dr phobia and I cancel more appointments than I make ( a mistake). I will not be cancelling an appointment with Dr. Loehrer(!!) and I have found a good group of small town doctors in Florida (they are the ones who made up for and diagnosed themistakes made by the Phila doctors).
17. What do you do to make this time as easy as posssible?
- For example: You take a friend or relativ with you
Answer: My greatest pleasure is to help other people, to help my family, and to believe there are reasons for everything.
18. Do you take any precautions to prevent the recurrence from cancer?
Answer: I try to have a healthy diet, used to execercise when I was strong, use medically approved forms of complementary medicine, mine are tame, as in fish oil, milk thistle or reflexology
19. Have you made significant changes to your life after you got cancer?
Answer: No. I feel as if I have been living with cancer since I had a cousin in childhood with a brain tumor. It seems to be one person after another. I worked for hospice when I was healthy.
20. How 're you feeling about the disease
- are you optimistic about outcome from your cancer
- are you more afraid that it might return
Answer: At this point I would like to be optimistic but I don't know if I should be. I also like to be realistic. Sue is an amazing inspiration. Just seeing her picture on the site does so much for me
21. Status - how is your progress?
ie. chemo didn't work, don't want to do surgery or radiation since it is too invasive at this point.
Answer: To be seen

22. Ideas/recommendation ...
Answer: Never let anyone tell you that you don't know your own body. Never let anyone tell you nothing is wrong when you know there is. Never neglect to educate yourself in the attempt to avoid being a "hypochondriac."(What my Mother called me :o(
23. Leave your e-mail adress in case you want to get contacted from other thymoma patients.
I would appreciate any contact from anyone, particularly if mistakes were made in their case, but I'm happy to talk with anyone: bocaburton@aol.com. If there is a delay in response it is because I am in the middle of trying to get treatment.