YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

 

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Tom Englehart and Susan live in Alaska, USA. He was 57 when he was diagnosed in October, 2007. His initial PSA was 2.5 ng/ml, his Gleason Score was 6 and he was staged T1c. He is undecided as to his choice of treatment. Here is his story.

I'm 57 years old, with a family history of Prostate CA. Both my Dad and my older brother, David, had it; Dad in his late 70s (no treatment given), David in his early 50s (radical prostatectomy - unhappy results). Both are now dead from other cancers - colon for Dad, lung cancer two years ago for David.

I have been screening regularly for over ten years with consistent PSAs in 0.6 ng/ml to 0.8 ng/ml range until this September when it jumped to 2.5 ng/ml. The velocity of this increase, combined with family history, led to biopsy in late October. Path report showed presence of two cores with adenocarcinoma involving 5 -15% of specimens, Gleason score of 6, clinical stage T1c, 90% chance that it is organ-confined. My urologist's recommendation is Laparoscopic Robotic radical removal within 3- 6 months, but encouraged other consults and/or second opinions.

I have sent the specimens to another lab for second opinion on samples - awaiting report. I have a second opinion urological appointment on the 27th of November. I'm interested to hear about actual experience of others with Da Vinci surgery. Also, curious re: costs for procedures others have experienced , including Da Vinci.

On a social, occupational level, I would like to hear what communications other men have made about their cancers to their employers, co-workers, friends, etc. What reactions have you received? Any suggestions about who NOT to tell?

Thanks in advance for all your support.

 

UPDATED

December 2007

 

 

I had second opinion meeting with another urologist yesterday - he recommends brachytherapy. Original diagnosis and disease stage was confirmed by a second lab analysis too.

Will have consultation with radiation oncologist next.

 

UPDATED

January 2008

 

 

After researching brachytherapy, the treatment recommended by our second opinion urologist, we have decided to go for da Vinci surgery. We are uncomfortable with the long term possibilities that the seeds will not eradicate the cancer and our options if there is a recurrence will be limited.

Because the docs here in Alaska have not performed as many of these procedures as we would like, we researched the Seattle area urology groups and hospitals to find someone with more experience. Based on the personal recommendation of a physician friend in Seattle and our internet daVinci research, we chose Dr. James Porter at Swedish Medical Center as our surgeon. We scheduled the surgery for the earliest date he is available - March 5.

The 7-8 weeks prior to the surgery give me the chance to strengthen myself physically and lose a few pounds. Though I am relatively fit and more active than most, I know I have room for improvement, so I am trying to increase my exercise and manage my eating habits. My hope is that I will have a better recovery post-op from doing abdominal crunches and Kegel exercises.

Despite the relief I feel from finally making my treatment decision, I still feel generally depressed. I am pissed that we have to endure this.

 

UPDATED

March 2008

 

 

I leave for Seattle tomorrow night for surgery on Wednesday (March 5) at Swedish Medical Center with Dr. James Porter.

A few weeks ago, I decided on my own to get another PSA test. Since my last PSA was almost six months ago in mid-September, I was curious to see where I am now. Had it gone up? Was it holding steady or even decreasing due to the new diet regimen my wife had helped me set up? The PSA came back at 0.8 ng/ml, down to the level I had consistently had for six or seven years each fall before the jump to 2.5 last September that triggered my biopsy! We are surprised and puzzled. What happened? Unfortunately, the biopsy in October had revealed the cancer, and that cannot have changed. Can it???*Note* Despite this new information, we have rejected watchful waiting as an option. We want the cancer out.

FYI - the dietary changes we made: lower fat diet (even though I have not eaten red meat in any significant amount for over 30 years), eliminated dairy milk, switching to soy milk, added pomegranate juice and capsules, Vitamin D and Super B Complex supplements, fish oil, green tea and flaxseed capsules, and aloe vera gel. These changes were based on personal discussions with other cancer sufferers, web postings and emails we received (thanks, Lan!). I lost about 5 pounds to 175. Best to all of you, and thanks for your postings and emails directly to me.

 

UPDATED

April 2008

 

 

 

As of today, I am about three and half weeks post-surgery. Both nerve bundles were spared during the five-hour surgery. The post-surgical path report a week later was excellent - CA confined in gland, no margins, all good news. The experience at the hospital was excellent too. Susan and I were both very impressed with Dr. Porter and his entire surgical team from admitting staff to anaesthesiologist to nurses to Dr. Jeff McCracken, a surgical Fellow working with Porter this year from Canada. His explanations of what to expect, both pre- and post-, were very thorough and compassionate. We related very well to him, as well as to Dr. Porter.

The catheter was removed one week after surgery - that action, coupled with the good pathology report, made for a celebratory day for us in Seattle. We walked all over town and had a couple celebratory cocktails at the excellent Brooklyn Seafood and Oyster House. Very nice! I had good urinary flow and reasonable control right off the bat. Unfortunately this was short-lived, as the next morning, I could not urinate. I was having very painful bladder spasms and a very difficult morning as we packed and prepared for our three hour flight back to Anchorage scheduled for that afternoon. It got so bad that we had to go back to the doctor's office a few blocks away where the catheter was reinserted - major bummer! We had to hustle to make the airport shuttle, suffer through security and board the plane. As good as the previous day had been, this day was pure misery. Before we left, Dr. Porter called the Anchorage urologist I had previously seen for a second opinion, to arrange for my follow-up appointment four days later to have the second catheter removed.

Since the removal, I have had good urinary flow most of the time, but some leakage when I cough or pass gas or move in different ways. Except for one unfortunate complete void while trying to hustle back home on a morning walk, the amount of leakage has been relatively small. I have been using one to two liner pads a day.

Per my doctor's post-surgical instructions, I am avoiding doing Kegels for eight weeks after surgery, but I have noted that other docs recommend starting them right away. I did many of these pre-surgery to aid urinary control after the operation. I'd like to establish better control sooner, so I am not sure which is the best way to go. Any experience-based suggestions would be appreciated. Also, just this week, I have felt some general discomfort in my abdomen that I feel is related to sitting up too long a few days at work. When I went home early to lie down, I felt much better. Internal swelling is an issue that seems obvious, but I did not really think about in advance. I believe it will take time for that to resolve itself.

As prescribed, I began taking 25 mg. Viagra the night the second catheter came out, and had a first partial erection four days later, a very pleasant surprise. I am taking that dose nightly and will try taking a 100 mg dose once a week, per a regimen we read about on YANA.

All in all, we are pleased with the outcome, and trying to take it easy and be patient.

Thanks for all your supportive emails and good wishes.


Tom's e-mail address is: tandspc@gmail.com

Note: Although Tom is asking a rhetorical question here, another mentor - Dave Martinez found that the hospital at which he was to have his surgery disagreed with his diagnosis and said he did not have cancer. It can happen which is why it is so important to get a second opinion on any biopsy from an expert pathologist.

 

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