Response Steve updated:2005.5.26

START here thymoma.de

Diagnosis:
1. How was your cancer detected?
Answer: I had a chest x-ray during an annual physical. The x-ray showed a large spot or tumor in my chest.

2. Did you feel any kind of pain or did you notice a change of your body?
Answer: No. I had no symptoms of any kind.
3. Do you know your staging?
Answer: Masaoka Stage II borderline III. WHO Stage B-1 with minimal invasion.

4. Do you have a family history of cancer?
Answer: No

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: Surgery. The surgeon removed the tumor by median sternotomy. May 5, 2003. My thymoma tumor was massive: According to the pathology report it was 14.5 cm in its largest dimension. It weighed 220 grams (= .5 lb). There were “multiple satellite nodules” in adjacent mediastinal fat, but no invasion of the pericardium. Surgery is the only treatment I have received. I declined radiation (see below).

-chemotherapie ( name the chemo and write down how many rounds you received)
Answer: None.

-radiation (what dosis did you receive)
-or a different kind of treatment
Answer: I declined to have adjuvant radiation although my surgeon at first recommended it as a follow up to surgery even though she said she got it all intact. The first radiation oncologist that I went to refused to radiate because the area was so large (because of the size of the tumor) that radiation would destroy about half of my lungs. A second radiation oncologist was more optimistic, but still held that radiation would destroy a good portion of my lungs. In view of the dangers of radiation and its unclear value my surgeon thought that the choice was 50/50. I had a higher chance of recurrence if not radiated, but radiation itself had real dangers given the size of the area that needed to be treated.

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: At first I was, frankly, terrified. The x-ray was an after thought after a good physical. My family doctor was clearly upset and worried. All I knew was that I had a big tumor in my chest—out of a clear blue sky. I thought I probably had lung cancer. The next day I had a ct-scan. The report was that I had a “large anterior mediastinal mass—probably neoplastic.” Dx: Lymphoma, thymoma, teratoma, or thymic cyst. Many doctors’ appointments, etc. No lung cancer but my family doctor and local oncologist concluded I had lymphoma. This also was very frightening. I was referred to the Thoracic Oncology Clinic at Upstate Medical University in Syracuse, NY for a biopsy. The surgeon there, Dr. Leslie J. Kohman, said on the basis of the ct-scan that I had thymoma and that it needed to be removed by median sternotomy. She said to forego the biopsy. She was very encouraging, but the prospect of such major surgery was very disturbing. Against her advice I had a biopsy. The result: Thymoma.

How did you feel during your treatment
- For example: During chemo you might have felt nausiated
Answer: The only treatment I had was the surgery. It was relatively routine, without complications. I had the usual six weeks of no lifting, etc. very little pain.

8. What was the most difficult part during your treatment
Answer: Immediately after the surgery, the same day, I had to get out of bed. The next day I had to walk, etc. I was very weak, exhausted, shaky. I was walking around the ICU with many tubes and being held up by aides, etc. (At one point after the surgery I counted nineteen tubes and electrodes coming into and out of me and attached to me.) I was not used to this as I have always been very physically active. For two or three weeks after the surgery I could barely walk around the block. But the doctors and nurses said to walk walk walk. Friends took turns coming in the afternoons to walk with me. My surgeon and family doctor swore that I would be back to normal, and able to do all activities, and they were right. But it took six to eight months. Pain meds interfere with normal bowel function. It took a couple of weeks to get mine back. There was a lot to deal with after the surgery, one thing after another, but nothing overwelming.

9. Where were you treated (name the hospital with the full adress )
Answer: University Hospital, Upstate SUNY Medical University. Syracuse, NY.

10. If you can recommend your doctor let us know his/her name.
Answer: Yes, I highly recommend Dr Leslie J. Kohman. She took complete charge of my care and surgery. She is an expert thoracic surgeon and knows a lot about thymoma.

11. What tip could you give a new patient?
Answer: My family doctor had never seen a thymoma in twenty years of practice and my local oncologist had only seen two in twenty-two years of practice. Dr. Kohman treats about half a dozen a year. My advice is to get diagnosis and treatment in a big city or teaching hospital. Don’t expect your family doctor and local small town oncologist to know much about thymoma. The median sternotomy is routine. A resident told me that it is the most common major surgery because of heart surgery. But heart surgeons don’t necessarily know how to remove thymomas. The surgery, splitting the sternum, etc. is very serious and no fun, but not as bad as you think it will be. A patient today must also be her/his own advocate and must research about medical treatments, options, etc.

12. What bothered you the most during your treatment?
Answer: The emotional aspects—fear, weakness, apprehension. Things happen during recovery. The second night I started running a high fever and all sorts of scary procedures went into play. Etc. But it turned out to be nothing. After surgery you are very vulnerable, weak, sick, dependent, but relieved to be alive.

13. What helped you most during this period?
Answer: Expert doctors. And the support of my wife, children, and friends.

14. How're you feeling today?
Answer: I feel great. I have no health problems that I know of, and I am fully active; gardening, hiking, sailing, playing with grand kids, etc.
15. Tell us a bit about your check-ups?
- Where do you get your check-ups The same hospital where I had the surgery.
- How often do you go for a check up? Once a year. In January.
- What do they do at your check up? I have a chest ct-scan with contrast once a year.

Answer:
16. How do you feel before you have to go to a check up
- Are you nervous, relaxed .....
Answer: Very worried. Not exactly nervous, but worried because I know if it comes back my life will be changed and I’ll have to start all over again with the treatments.
17. What do you do to make this time as easy as posssible?
- For example: You take a friend or relativ with you
Answer: Nothing helps. I try not to worry too much the rest of the year. My wife goes with me.
18. Do you take any precautions to prevent the recurrence from cancer?
Answer: No.
19. Have you made significant changes to your life after you got cancer?
Answer: No. But the whole experience is life-altering. I certainly have a different perspective after thinking I had lung cancer, then lymphoma, then facing major surgery. Especially since I never had any serious medical problems before this. I’ve looked into the abyss. I try to prize every day that I am alive and kicking, but it is hard for me not to get caught up in all the petty things that I now know don’t really matter. 90% of the patients treated in the clinic where Dr Kohman works have lung cancer. Just spending a lot of time there shook me up thoroughly.
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: Of course I’m afraid that it will return. Dr Kohman says that I have a 20% chance of recurrence. She also says “If it comes back we’ll open you up and take it out again.” Hmmm. That doesn’t sound too appealing. She also says that there are advances in chemotherapy, etc.
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:

22. Ideas/recommendation ...
Answer: For a person diagnosed with operable thymoma, I would say that the prospect of median sternotomy seems a lot worse than it is in fact. I don’t want to minimize the prospect of any major surgery, but the whole thing for me was over in about eight weeks. The first two or three weeks after surgery are the toughest—pain, worry, inactivity, etc. You have to devote all your attention to and focus on getting that sternum healed. But soon I felt my strength and health returning, and that was wonderful. A resident told me that bone is the only tissue that heals 100%. Once your sternum is healed it is back to normal. (Although it is odd seeing the steel wires in my chest x-ray.) I have only the slightest scare on my chest. There are many advances in surgery and they are improving it all the time.
23. Leave your e-mail adress in case you want to get contacted from other thymoma patients. sps.schwartz@gmail.com