Small trial suggests the scans might help, but experts aren't so sure
by Beverly_D_1 on Sat May 16, 2009 12:00 AM
My husband was diagnosed with a malignant thymoma in 1982. It had spread to his right lung. Physicians in our city (which is a large one with lots of cancer research) agreed that there was nothing to be done in the way of surgery or treatment. We were in our 30's with small children. We were guided by a friend of the family to seek help at MD Anderson Cancer Institite in Houston, Tx. We felt we had nothing to lose at this point. We traveled to Houston, and within 3 days, after tests, determined that surgery would be an option. The cancer was Stage 4. They removed his lung and thymus and scraped the chest wall until they could see nothing but fresh tissue. He then had a radiation there in Tx, and after that, we came back home for 6 rounds of chemo. He was weak and looked so pale and sickly, for all this takes a toll on the body! I tried to give him nutritious foods and supplements, and we had many people praying. We also have positive attitudes and try not to look at the negative more than we look at the positive. Six month check ups showed him to be CANCER FREE! He continues on to have yearly check ups and continued to be well. Life was normal again. Our children were growing up and ife was wonderful.
Two years ago, I felt that he wasn't well...that there was more to the frequent upper respiratory infections. I took him to a sinus and allergy clinic. It was found that he had a fungal infection in a sinus cavity. He had surgery and did well, but the infections continued. He developed a cough and was short of breath. He was still going for his yearly ck ups and was seeing every doctor that I took him to, only to find that all scans and x rays were normal.
In Feb 2009, after a yearly ck up with his oncologist here at home, he was found to have (from PET scan results) a recurrence of the thymoma. It is in his right chest cavity where the lung was removed 27 years ago. We are now in our retirement years. Our children have grown up and we have grandchildren, but we are not ready to give up hope.
In April 2009 we returned to MD Anderson in Houston. They have determined that there are once again treatment options. He has had one round of chemo which he just finished yesterday. We will return to Houston after the second round for more PET scans to see how the chemo has affected the tumor. If the outcome is good, then he will have surgery. Now I have to tell you, his oncologist was surprised that MDA was considering surgery! He had been receiving reports and knew that lung function wasn't good. He only has one and he is at 30%..not a good idea for surgery. MDA ordered some Pulmonary Rehab to strenthen his lung function, so that when he has surgery, he will be more apt to come off the vent.
We are still positive and prayerful. I am doing everything I can to care for him and to be sure that we leave no stone unturned. Every patient needs an advocate. I am his.
My husband holds the world's record on recurrent thymoma. He is the one who has gone the longest without a recurrence. The things that are known about thymoma are few, but he is a wonderful example of hope! I know that there are some medical institutions out there who are making some giant leaps in cancer research and gaining knowledge every day.
Our walk with MD Anderson in Houston has been, and is continuing to be one of the best. I would urge anyone who wants more information on thymoma to see what you can learn on the MD Anderson site. When we were there before, there was nothing positive to know about it. Now there is. We have survived this long, and will beat it again.
As a caregiver, I long to help everyone I can. Not every day is easy, and sometimes it is all we can do to focus on what needs to be done because of our fear of what may happen. We set the tone of the day for our spouse. They are doing all they can to fight the battle against that horrid ugly beast called Thymoma! It is a hard fight to watch, but we hold the keys to helping make each day manageable.
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
We care about your feedback. Let us know how we can improve your CancerCompass experience.