My thymoma files Theresa updated:2007.04.29

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Diagnosis:
1. How was your cancer detected?
Answer: Mom had been having "a hurting" under her right arm. She was worried about breast cancer, but her annual check-up and mammagrams came back normal around October of 2005. Her OBGYN doctor advised if the sensation continued, to call and she would re-examine her. Mom went back to her OBGYN doctor in December of 2005. The doctor advised again everything seemed normal, but to give mom "peace of mind", she gave her a prescription to stop by the diagnostic center for a chest x-ray. The doctor called my mom personally the next day and told her there appeared to be a "mass" in her lung. She advised she had scheduled her for a CAT scan that same day and had made an appointment with a lung specialist to read the CAT scan. It was obvious they suspected lung cancer. We were completely shocked and devastated as we had just lost my Uncle to a long battle with lung cancer on Thanksgiving day 2005. The lung doctor reported the "mass" was actually not in the lung, but in the "mediastinal chest cavity". He felt it was an enlarged lymph node and suspected Lymphoma. He scheduled mom for a Bronchoscopy (essentially, a needle biopsy) the week after Christmas 2005. The results came back "normal"/no cancer cells detected. The lung doctor suggested we just "monitor" the spot with a CAT scan every three months and advised if it did not grow or change it was probably nothing. He stated the only way to know for sure was to schedule a more invasive surgical biopsy which could be risky and stated, if it were him, he would not do anything further unless the spot changed. Around 5/2006, we did get a referral to a general surgeon to find out what would be involved if it ever did come to the point surgery would be needed. For the first time ever, the surgeon referred to the spot as a possible tumor on the thymus gland. When this was brought up to the lung doctor, he just stated "well, that is his opinion". After the November 2006 CAT scan, the lung doctor called my mom and told her the "lymph node" was larger and there were now other enlarged lymph nodes in the area. He advised an immediate surgical biopsy. We then insisted on a referral to IU Medical Center and were given a referral to see a "Cardiothoracic surgeon", Dr. Kenneth Kessler.&n bsp; He also suspected NonHodgkins Lymphoma. An inpatient surgical biopsy was done at IU Med. Center and mom was diagnosed with Stage 3 inoperable Type B1 Thymoma right before Christmas of 2006.

2. Did you feel any kind of pain or did you notice a change of your body?
Answer: Not reallly. The initial pain under mom's arm turned out to be unrelated and just "muscoskeletal" pain. The only symptom mom noticed was fatigue. However, she attributed this to her age and being overweight.
3. Do you know your staging?
Answer: Again, the doctor stated it was Stage 3. He stated it was inoperable as the Thymoma had wrapped around the Vena Cava vein/artery in the chest.

4. Do you have a family history of cancer?
Answer:
No history of cancer except for my Uncle who died of lung cancer in 11/2005. However, he had smoked since he was a teenager and died at age 64. Mom had not smoked for 38 years, not since she found out she was pregnant with me, and was never a heavy smoker.
5. Did you have any kind of surgery before?
Answer: Mom had her tonsils out when she was a child. No other surgeries.
Treatment:
6. What kind of treatment did you receive (be as specific as possible)
-surgery (was your cancer invasive? which organs where involved?)
Answer: Mom was referred to Dr. Patrick Loehrer, an oncologist at IU Med Center who specializes in Thymomas for the last 20 years. He recommended Chemotherapy first to, hopefully, shrink the mass. Mom just finished four rounds of chemo two weeks ago. She is scheduled for a CAT scan this Monday, 4/23/07, to see if the cancer has shrunk. We will then meet with Dr. Loehrer to discuss the next steps. If he and the Cardiothoracic surgeon, Dr. Kessler, feel it is now operable, surgery will be scheduled. If not, they will probably start radiation.
-chemotherapie ( name the chemo and write down how many rounds you received)
Answer:Again, 4 rounds. She had a chemo treatment every 3 weeks for a total of four treatments. I am sorry, I do n ot have mom's folder with me right now for the specific combo. of drugs. I believe it was the standard treatment of: Adrymyacin; Cisplatinum; Platinum-I can find out and let you know.

-radiation (what dosis did you receive)
-or a different kind of treatment
Answer:Radiation is probably next.

Where there any kind of side effects involved in your treatment?
Answer: Mom had a terrible time. She had four chemo treatments and three hospitalizations due to being "neutrapenic"/having dangerously low white blood cell count. The chemo seemed to kill the good with the bad. Mom was hospitalized for five days on intravenous antibiotics in an isolated room after both the first and second treatment. After the third treatment, she was given a shot of Neulasta which is a new drug which is supposed to stimulate the bone marrow to produce more white blood cells. It kept her out of the hospital after the third treatment. However, she en ded up in the hospital with fever and low blood count again after her fourth chemo. This hospitalization, however, was only for two days. The doctor felt the Neulasta probably helped her recover/produce new cells quicker. She also had low red blood cell count and was given a shot for this after her fourth chemo. Mom had the standard problems associated with chemo as well: hair loss; fatigue; loss of appetite; depression; chemical taste in the mouth. However, we were pleasantly surprised how the new drugs available kept mom from vomiting/nausiousness after each chemo treatment as this was by far her biggest fear. She strongly feels the Emend pill is a godsend.
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: Our entire family was shocked and devastated. My maternal grandmother lived to be close to 90 and cancer does not run in our family. Obviously, an overwhelming sense of sadness and despair. I was especially angry that we had set around and "monitored" this thing for a solid year at local doctors advice. I had alot of guilt as her daughter for not insisting on a second opinion sooner/alot of feelings of "what if". However, my mom has never really went to the doctor regularly and did not want to do anything further/wanted to believe it was nothing and to put it in God's hands. She only went through the surgical biopsy and treatment thus far, mainly for the family. I am so proud of her. She has always been a "chicken" when it come to the doctor, but she has been so brave. She has done better than I ever would have!!

How did you feel during your treatment
- For example: During chemo you might have felt nausiated
Answer: Depressed, tired, weak, nausiated at times, no appetite at times

8. What was the most difficult part during your treatment
Answer: Mom seemed very depressed for the first two weeks after each treatment. She would then start to feel good again for the third week before it was time to go back for her next round of chemo. She did not like feeling "weak and useless" were her words.

9. Where were you treated (name the hospital with the full adress )
Answer: Indiana University Medical Center, Indianapolis, Indiana (sorry, I do not have the full address on hand)

10. If you can recommend your doctor let us know his/her name.
Answer: Dr. Patrick Loehrer, a reknowned Thymoma specialist/Oncologist at IU Med Center in I ndianapolis. Everything I have researched/read tells me we are lucky to live close to Indy/to be his patient.

11. What tip could you give a new patient?
Answer: First of all, if they ever find a suspicious "mass" or spot, do not wait and monitor. Always get a second opinion!! I have since learned from literature that Nonhodgkins Lymphoma is "never" diagnosed by a needle biopsy. I have also read that Thymoma usually does not show up on a needle biopsy. I have also learned that my friend's mother had lung cancer, but the intial needle biopsy showed negative. Again, this was the first test done on mom and it came back negative and gave us all a false sense of security. The only true way to know if a mass is cancer it to do a surgical biopsy for a bigger sample. I feel misled that the local doctor in Columbus, Indiana, originally suspected Lymphoma, yet only ordered a needle biopsy and nothing further. God only knows if things would have been different if we would have not waited a year for fur ther testing/a second opinion. We will never know and it is a horrible regret. Be proactive. Hoping and acting like nothing is wrong does not make it so and doctor's make mistakes/do not always know best!

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

13. What helped you most during this period?
Answer:
Family and prayer
14. How're you feeling today?
Answer: Good this week. Worried about what will come next.
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: Still going through treatment right now. So far, have seen Dr. Loehrer every three weeks before each chemo treatment. Again, we go this coming Monday, 4/23/07, for a CAT scan and meeting with Dr. Loehrer to see if the caner has shrunk/how to proceed from here.
16. How do you feel before you have to go to a check up
- Are you nervous, relaxed .....
Answer: We are always keyed up/nervous
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 dad and I have been by mom's side for every treatment and will continue to be here for her. My sister in DC also has flied home to be with mom whenever possible as well as my brother who is in college. We are blessed with a very close, loving immediate and extended family.
18. Do you take any precautions to prevent the recurrence from cancer?
Answer: Unfortunately, the cancer is still present. We are still fighting the battle.
19. Have you made significant changes to your life after you got cancer?
Answer: Not really. Just trying to take it day by day and trying to eat better and enjoy life when able.
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: From everything we have read, we are very fearful. We try to take it each day at a time and thank God for whatever time we may have together. By the grace of God with his power, he will heal mom be it His will. We could not function if we worried about the future. We are just thankful for today.
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: A CAT scan was done after the first two chemo's and the cancer had shrunk. We are hoping this next scan after four full treatments will show the mass to be alot smaller.

22. Ideas/recommendation ...
Answer: I am thankful for the internet and the sites I have found which show other Thymoma cases. It is good to know we are not alone.