Response to the thymoma query

Response
Patricia
updated:2005.09.02

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thymoma.de

Introduction:
Please, tell us your first name, gender and your age and maybe a short discribtion about yourself, family, profession, where you live......
Answer:
HI, My name is Patricia Marley, I'm a 38 yr old female married with 2 daughters, (Heather almost 19 & Sami is 11) Dan my husband will be 47 next week. We live just north of Detroit in Michigan. Due to my long list of medical problems (14 surgeries to date), my oldest my oldest daughter with bipolar & borderline personality disorder, my Mom and her laundry list of medical problems at the ripe age of 80 along with Dimentia and my Dad who just turned 80 and has cancer for the 3rd time - makes it pretty hard for me to work taking care of all of them. Did I mention my Mother-in-law just had surgery in July as well?
Diagnosis:
1. How was your cancer detected?
Answer: I ran a fever for about a year or so, and after every test possible, they finally did a CT scan from head to toe, and there it was. (That was back in 2001)

2. Did you feel any kind of pain or did you notice a change of your body?
Answer: Not then, but since then (it is still in my chest, and has grown since then) I have been in the hospital several times, with the same thing, chest pain, very low blood pressure, & extremely trouble breathing - to the point that I get dizzy and almost blackout!
3. Do you know your staging?
Answer: No, I do know that there are 2 tumors there though, I in the thymus, and one on top.

4. Do you have a family history of cancer?
Answer: Oh yes, my Dad has had prostrate, kidney cancer, and now it is back in the same kidney and has spread to both of his lungs. My half brother lost his whole lung and lymph nodes to cancer. My oldest daughter is currently being checked for cervical cancer.

5. Did you have any kind of surgery before?
Answer: Not on my chest, waiting to hear from the University of MIchigan, that is where my lung doc is sending me back to since none of the doctor's around my area are famailar with thymoma.
Treatment:
6. What kind of treatment did you receive (be as specific as possible)
-surgery (was your cancer invasive? which organs where involved?)
Answer:

-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:In 2001, I was scared to death of the surgery, then it was called off - they decided to keep a watch over the next 3 months. 4 years later I have had nothing but problems with these tumors, and I am very angry, upset with the whole medical field - I just want this taken care of so it will fix the other things that have gone wrong with my body as well, then I will feel better!

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:

10. If you can recommend your doctor let us know his/her name.
Answer:

11. What tip could you give a new patient?
Answer:Don't wait - tell the doc's you want it done right away! It will only cause you more harm in the long run.

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: Tired most of the time, still having a very hard time breathing & the chest pains they come and go, but when they come look out!
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: My next visit will be at UofM for surgery and I can't wait!
16. How do you feel before you have to go to a check up
- Are you nervous, relaxed .....
Answer:
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:
19. Have you made significant changes to your life after you got cancer?
Answer:
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 would feel a whole lot better if the doctor's and radiologists knew or even heard of thymoma by me, it is pretty scary when you have to explain your diseases to them. They tell me I am a scientist/researcher's dream come true - I guess that is my reason for being :)
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: Be persistant, remember it is your body, you know when it is not working right. If you are happy with the care you are receiving, change it - it won't change on it's own and you won't get better unless you take charge!
23. Leave your e-mail adress in case you want to get contacted from other thymoma patients. rockcandy1455@aol.com

Dear Joe,

You bring tears to my eyes, thank you so much. The website is wonderful and will help the rest of my family who does not understand what this is or what it is doing to me.

After reading the other posts I realized I made mistakes and didn't list my surgeries or other health problems that were related to the thymoma. Since being (semi) Dx in 2001 I have now an enlarged spleen, liver also, RBCA and take Procrit injections weekly for it, and enzyme defeciency, along with b-12 defec. I get b-12 shots once a month. More importantly I had two tumors one has more than doubled, not sure about the other one, one is on top of thymic gland by aortic pushing on chest wall now causing fluid around my heart for over a year now, also fluid in my left lung again, chest pain sometimes so bad I can't even breath in. Shortness of breath that causes severe headaches - to the point of almost passing out. I have been hospitalized several times over the last 4 years for this and yet these doc's have no idea what is causing this and yet say it is NOT related to this THING in my chest!

I am down to one kidney that is a sponge kidney and produces it's own stones (what a bonus) minus a gallbladder, an appendix, have had a total of 14 surgeries to date. I had a AVM in my head when I was 15, shingles when I was 14, a seizure disorder now, and I take about 20 pills a day and my Procrit injection once a week since December of 2004 for the rest of my life. I also have thallasemia intermedia. I just recently read something that said the AVM's have something to do with thymoma's - another bonus I guess!

I would love to come meet with you, what an inspiration and honor that would be for me. Let me know when and how and we can work it out. I have a cell and can call you after 9 pm when it is free for me, LOL. As for the doctor, how do I reach him, do you have a phone number, or email? Do I need to be referred to him? I am so anxious and happy someone is willing to help me, maybe my brick walls are finally coming down! God bless you for reaching out to me, I look forward to hearing from you soon.