MM Patient Looks Through "Open Window" Towards Brighter Future

Robert "Bob" Rahe is a 50 year old, self-employed entrepreneur and former school teacher who has malignant pleural mesothelioma. Bob's story reenforces the adage that "when God closes a door, He opens a window." Bob is learning day by day that the window, at least for now, remains open. He intends to keep it that way.

Bob began experiencing right-sided abdominal pains in early July, 1997. The pain was most intense when he was getting out of bed or out of his car. Because the pain was intermittent, he did not seek immediate medical attention. But the pain grew worse.

Bob went to see Dr. Karen Joyce in early August, 1997. Dr. Joyce ordered chest films, which showed a right-sided pleural effusion. Dr. Joyce referred Bob to a pulmonologist, Dr. Stephen B. Smith.

Dr. Smith performed a bronchoscopy, which was normal. A chest CT scan was also performed, once again revealing the right pleural effusion with no obvious pleural based lesion or abnormal pleural enhancement.

That same day, Bob also underwent a right thoracentesis. Dr. John T. Batter, a thoracic surgeon at the Bishop Clarkson Memorial Hospital in Omaha, Nebraska, removed fluid from Bob's lung. Although plenty of fluid was removed, the doctors could not make a definitive diagnosis.

On September 17, 1997, Bob returned to the hospital and Dr. Batter performed a video-assisted thoracoscopy. During the procedure, Dr. Batter removed small nodules from Bob's diaphragm, the visceral pleura and parietal pleura. The pathologists who examined the tissue samples diagnosed Bob with diffuse malignant pleural mesothelioma.

Bob's sister Lisa Whiting contacted our office in October, 1997. She was concerned because the doctors in Omaha were not experienced with the treatment of mesothelioma. Lisa and her family had been reading our website and they contacted Dr. David Sugarbaker in Boston (Brigham & Woman's Hospital). Dr. Batter, who had heard Dr. Sugarbaker speak at a medical conference, was impressed with Dr. Sugarbaker's expertise. Dr. Batter wrote a letter of introduction and forwarded Bob's medical records. Bob followed up by traveling to Boston for preliminary testing. He was scheduled for an extra-pleural pneumonectomy (EPP) later that month.

Bob returned to Boston on October 23, 1997 for the EPP. He was scheduled to have an MRI prior to the surgery. Bob was apprehensive about the MRI. Speaking from experience, I know how claustrophobic it can be when you're inserted into the center hole of what looks like a very large roll of toilet paper. Bob wanted to be sedated. According to Dr. Sugarbaker, his team offered to sedate Bob or put him under general anesthesia. A miscommunication arose, however, and the MRI was not performed. Without an MRI, Dr. Sugarbaker could not perform the surgery. Rather than remain in Boston for several more weeks, Bob returned to Nebraska without the surgery.

Upon learning that Dr. Sugarbaker did not perform the surgery, we suggested that Bob contact Dr. James Mault, a cardio-thoracic surgeon with the University of Colorado Medical Center in Denver. After visiting with Dr. Mault, a few days later Bob was scheduled for surgery in Denver.

The surgery was performed on November 25, 1997. Dr. Mault first performed a bronchoscopy to determine whether the tumor had invaded the distal trachea or proximal right bronchial tree. Fortunately, there was no invasion. Dr. Mault proceeded with the EPP and pericardiectomy. Ten hours and forty-five minutes later, Bob awakened in recovery. According to the records, he had tolerated the procedure well.

On the fifth post-operative day, Bob experienced arrhythmia -- abnormal beating of the heart. The doctors were able to control the arrhythmia and Bob continued to recover. He was discharged from the hospital on December 4, 1997.

On December 2, 1997, I received the following E-mail from Lisa Whiting. This makes it all worthwhile.

Roger:

I cannot thank you enough for recommending Dr. James Mault at UCHSC in Denver. He performed an Extrapleural Pneumonectomy on my brother on November 25th. I have to tell you that the first time I ever called his office, just asking about credentials, etc., Dr. Mault got on the phone, himself, and spoke to me for about twenty (20) minutes. After our awful experience in Boston, Dr. Mault has been like a "breath of fresh air." Bob's surgery took nearly eleven (11) hours, and we were frantic by the time Dr. Mault came out to talk with us. Much to our surprise, he said that the surgery had taken longer because the tumors were so small that they were more difficult to remove. He also said that this was the "best" case of Mesothelioma that he's treated! He indicated that the Mesothelioma was in early stages and that the prognosis looked good.

We have a long way to go, we know that. But, we have so much more hope now that Dr. Mault has done the surgery. Having a surgeon that cares enough to communicate effectively makes all the difference!

By the way, Bob never did have an MRI. As it turns out, Dr. Mault requested a CT Scan, which he said was more than enough. My first thought was, "We wasted 2 ½ months because of an MRI that wasn't even necessary!" But that's not true; waiting for Dr. Mault gave Bob and our family peace of mind, and that means a lot!

Thanks, again, Roger!

Sincerely,
Lisa Whiting

[Note: I try to leave this website forum open to everyone. I am not a doctor and I am not trained to endorse one medical procedure over another. However, the issue over whether an MRI should be preferred over a CAT scan remains controversial. Several doctors, including Dr. Sugarbaker, require the MRI. By reprinting Lisa Whiting's letter in its entirety above, I am not necessarily endorsing her views about whether an MRI is necessary or not.]

Today, Bob is doing his best to rebound. He is fourteen months post-surgery, and his CT scans have been negative for new tumors. Bob has not had to have chemotherapy or radiation therapy.

Bob continues to work as a partner in a health care assistance business. He takes one day at a time and continues to enjoy the "fresh air from the opened window."

** POSTED MARCH 4, 1999 **

An Update -- 6/1/99

Correction Bob has had both chemotherapy and radiation since his surgery in November of 1997. He had four cycles of chemotherapy [carboplatin and taxol] in Omaha beginning in January of 1998. That was followed up with 6 weeks of radiation treatments. He is doing much better and is due for his semi-annual CT Scan on June 10th. Bob is having blood tests every 3 months and CT Scans every 6 months.

Bob has gained back about 15 of the 45 pounds he lost after surgery, which in this context is good news! Bob wants to tell everyone, in his words, "I owe my life to Dr. Mault and his assistants at University Hospital, as well as Dr.'s Silverberg and Prowse, in Omaha."

An Update -- 1/25/01

Bob reports he is feeling better than ever and wants fellow mesothelioma patients to know "you can survive - I'm proof positive." He continues his semi-annual CT Scans, blood tests and chest x-rays and has not required medication, chemotherapy or radiation treatments since the middle of 1998. As a final note from Bob, he knows he will not be running any marathons but under the circumstances he is learning to adapt to and make the best of his new lifestyle.

An Update -- 8/8/01

Bob continues his follow up visits with his doctor, where he undergoes blood tests, chest films and a CAT scan. His next appointment is in September. He is not taking any medication at this time.

His sense of humor remains intact, continuing to joke about how he is not ready to run any marathons. Unfortunately, the current heat wave this summer has made his breathing noticeably difficult.

An Update -- 10/4/04

From the middle of 1998 until September of 2003, Bob remained cancer free. He continued faithfully with his semi-annual routine of follow up visits with his doctor, CT scans, blood tests and chest x-rays.

In late summer of 2003, Bob noticed that his waistline was expanding. He felt a bit more sluggish and tired. His semi-annual visit to his doctor prompted further testing after the CT scan revealed a small tumor. That tumor was biopsied and determined to be benign. During the operation, the surgeon removed fluid from his abdominal cavity. The specimen was immediately sent to the laboratory for pathological evaluation. The tests confirmed what the surgeon suspected. Bob's mesothelioma had returned, this time invading his abdominal cavity.

Now six years later, Bob faced another battle with mesothelioma. After reviewing all of his treatment options, he ruled against surgical intervention and opted for treatment with chemotherapy. Bob began receiving Alimta with Cisplatin in September of 2003. After three of four rounds of chemotherapy the abdominal swelling ceased. The combination of Alimta with Cisplatin was continued until July of 2004. Today Bob is receiving only Alimta every four weeks. The CT scan in September was clean.

His upbeat spirit keeps him going. He tells us that he still leads a pretty normal life. He works part-time from his home and only experiences the pesky side effects of chemotherapy for a week after treatment. Then it's back to business as usual. He boasts, "if you saw me on the street and didn't know me, you'd never know I have cancer. But I can't handle much more than one flight of stairs."

Bob Rahe passed away on July 30, 2008