Steve updated:2008.5.23

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Introduction:
Please, tell us your first name, gender and your age and maybe a short discribtion about yourself, family, profession, where you live......
Answer:Steve, Male, Age 55

Diagnosis:
1. How was your cancer detected?
Answer: CT scan was done for a persistent cough and pulmonary/sinus inflammation that couldn't be diagnosed and didn't respond to drugs.

2. Did you feel any kind of pain or did you notice a change of your body?
Answer: No pain. I had come down a few months prior with a cough, wheezing and shortness of breath.
3. Do you know your staging?
Answer: Stage II, cortical-type, invading the right lung pleura

4. Do you have a family history of cancer?
Answer: Mother and father. Sister and brother (both older) have been cancer-free.

5. Did you have any kind of surgery before?
Answer: No
Treatment:
6. What kind of treatment did you receive (be as specific as possible)
-surgery (was your cancer invasive? which organs where involved?)
Answer: Robotic-assist surgery to remove the tumor and lobe of the lung where it had spread. I had surgery about a year later to remove a small growth that showed on the scan. This growth was PET-negative, but as I understand it ANY unexplained growth in the tumor area has to be presumed cancerous given the history regardless since PET scans can miss things. This tissue turned out to be (more or less) non-malignant.

-chemotherapie ( name the chemo and write down how many rounds you received)
Answer: No chemotherapy - I've been told there is no role for chemotherapy with this tumor as it isn't "angry" enough to respond to chemo.

-radiation (what dosis did you receive)
-or a different kind of treatment
Answer: 30 radiation sessions following the initial surgery.

Where there any kind of side effects involved in your treatment?
Answer: No. A little tired during radiation but it wasn't really a problem.
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: Fear and adrenaline. You'll eventually burn out on the adrenaline as you start to accept the situation. I don't really think it is much different for any type of cancer. The problem is that this one is fairly rare so it is hard to get information.

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: I developed post-surgical myasthenia gravis, which is unusual, but it happens. (The MG is now in remission.)

9. Where were you treated (name the hospital with the full adress )
Answer: Hoag Memorial Hospital, Newport Beach, CA

10. If you can recommend your doctor let us know his/her name.
Answer: Dr. Richard Fischel - thoracic surgeon. Knows his stuff.

11. What tip could you give a new patient?
Answer: Find out everything you can and get second and even third opinions on >>everything<<. This is a rare and serious disease. One oncologist I initially consulted had never had a single case. Because it is so rare there isn't much science -- especially as regards chemotherapy, so each doctor brings their own experience and 'gut feel' to the case. That means you want a grade-A doctor.
My advice is to find first-rate doctors and get their opinions on your case, then select one to 'mange' you. Even if your insurance won't pay for second opinions, get them anyway. You need them.
To find good doctors, forget all about the useless "ratings" websites. Ask doctors you know and trust for referrals to first-rate specialists they personally know. Good doctors know who the good doctors are and who the idiots are, even if they don't want to say so directly. (Believe me, there are a lot of mediocre and indifferent physicians out there and you don't want this disease anywhere near them.) I just counted - I went through 11 doctors before I got to the five I have now. If you still can't find anyone, go to the nearest university or teaching hospital and get referrals there. Thymoma can very often involve equally rare 'co-morbid' conditions like myasthenia gravis, immunologic problems, etc. So you need to have ready resources at hand to deal with any secondary complications.

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: Not too bad. The initial problems (cough, wheezing, sinus inflammation) are still there, but have settled down.
15. Tell us a bit about your check-ups?
- Where do you get your check-ups: UCI Medical center: Pulmonologist every two monts, oncologist every six months, neurologist every three months.
- How often do you go for a check up? (above)
- What do they do at your check up? CT scan every six months, blood tests every three months
Answer:
16. How do you feel before you have to go to a check up
- Are you nervous, relaxed .....
Answer: After two years it has become 'background noise.
17. What do you do to make this time as easy as posssible?
- For example: You take a friend or relativ with you
Answer:
18. Do you take any precautions to prevent the recurrence from cancer?
Answer: I know of no such precautions other than regular scans to check for growths
19. Have you made significant changes to your life after you got cancer?
Answer: No
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: I am optimistic that it is behind me, but I know it can return for as long as five years after resection. Fear gets you nowhere. Live life.
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: I am tumor-free for now.

22. Ideas/recommendation ...
Answer:
23. Leave your e-mail adress in case you want to get contacted from other thymoma patients.
sdcpn@socal.rr.com