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Cancer: Prostate Message Board
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Old 01-26-2006, 08:07 AM   #1
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UPDATE re: We're Extremely Afraid and Not Sure What to Do Now....(very long)

My husband is 40. For the last 5 years he's suffered from a painful enlarged prostate. 5 years ago he was diagnosed with prostatitis and treated with antibiotics. I recall the PSA was normal but on the high side of the scale. The antibiotics worked and all was well. I realize that any swelling or infection in the prostate can elevate the PSA levels.

A year later the symptoms came back but this time there was a noticeable mass on the digital exam. PSA was about the same as before but I recall it being slightly more elevated. No antibiotics were perscribed but a prostate biopsy was performed and it was benign. We were told to come back if it persisted.

Another year later, the mass is even larger and more painful. This time a prostate biopsy was done under the guidance of ultrasound. Once again the results were benign but were called "benign atypical". PSA reading was 1.9 My husband was told to come back at 6 months and at a year for a recheck.

One year went by and now my husbands prostate is very painful and the mass is very large. The mass is pushing into the rectum and it is uncomfortable for him to have a bowel movement. His PSA was 2.91. His urologist has referred him to a prostate specialist at the University of Illinois Chicago Hospital.

We went to UIC to have this specialist do a cystoscopy, proctoscopy and prostate biopsy and CT scan with contrast. He was concerned that this could be a cancer outside the prostate and more related to bowel/rectal. The tests confirmed the mass is on the prostate. The surgeon took multiple stabs at the prostate to obtain good tissue for the biopsies. The prostate biopsies did come back benign.

Unfortunately the UIC surgeon is not satisfied with the benign results. He told us that in his many years of experience, he has gone in on young men my husband's age to remove bothersome benign prostate masses, only to find out that there was a malignant prostate Sarcoma there instead.

After researching prostate Sarcomas, we are horrified. Sarcomas are deadly and there is very poor prognosis with Sarcomas. Sarcomas are different than typical prostate cancer. Sarcomas are deadly and patients don't survive with prostate Sarcomas. Sarcomas are rare and account for less than 1% of all cancers. I just can't believe my husband could have a deadly Sarcoma after having multiple benign prostate biopsies over the last several years. Is it even possible that a Sarcoma cancer is lurking in the prostate even with all those benign biopsies??

He is highly recommending an open abdominal radical prostatectomy. He told my husband that if he were his own brother, that he would insist on a radical prostatectomy. He does not recommend doing it any way other than open abdominal. He said he could do it transrectally via scope like a TURP but it would not preserve the nerve endings to maintain urinary continence and erections. He feels confident he could maintain nerve endings with the open abdominal approach.

He also says he would have to remove a portion of the outer rectal tissue to free all the 'margins' if it is a cancer. He would also have to take some of the bladder neck tissue to free the margins also. I'm not sure if removing the bladder neck is typical or standard in a radical prostatectomy. I do know the prostate encircles the bladder neck and if there is a cancer, that the surrounding tissues need to be excised to stop the spread of cancer cells.

My husband is also extremely allergic to most all narcotic pain medications. He'll either have a seizure or have throat swelling. We've figured this out first hand with other surgeries. I don't know how his pain could be managed post op.

Our urologist who referred us to the specialist at UIC feels no one else is more experienced in this field as this doctor is. The specialist is titled "Professor of Urology" at UIC. Our home doc doesn't have a name of another urologist for a second opinion. He feels this guy is the best in prostates and has seen the most and done the most. No other surgeon would have seen what this guy has seen. We have not been given any other test scores or values like I've seen mentioned on this forum. I'm not sure what they all mean or their significance.

Currently we are on hold on our decision. The UIC surgeon put my husband on PROSCAR to reduce the amount of Testosterone in his prostate. This is suppose to shrink the prostate in patients who suffer from benign prostate hypertrophy (BPH). He said if it shrinks, then that might rule out a malignancy and we could discuss other treatment options. He goes back to see him in less than 3 months to see how the PROSCAR is working. I guess we're looking for some insight here on the Healthboards and some useful words of wisdom. Thanks for listening.

Laura

Last edited by LauraDan; 03-09-2006 at 05:14 PM. Reason: update

 
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Old 01-26-2006, 09:53 AM   #2
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Re: We're Extremely Afraid and Not Sure What to Do Now....(very long)

Hello. I may be wrong, but I doubt that you'll find many people on this Board who are familiar with the particular condition you describe. My suggestion would be that you use the next three months to get additional medical opinion(s), just so you can gather as much reliable information as possible. From your letter, I assume that you are in the Chicago area. One possible source for you might be the Northwestern University Dept. of Urology.

I'd advise taking a list of your questions to each appointment. Relevant questions might include your concerns about how a possible surgery would be conducted. Will there be a pathologist available during the surgery to help the surgeon make crucial decisions about how much tissue to excise? During my open RP surgery, the surgeon performed "frozen section" analysis on tissue in the bladder neck and near the nerves to try to ensure that he took enough tissue, but not too much.

Other questions might include how much experience each doctor has with this type of surgery, and what were the outcomes with regard to cancer control, continency, erectile function, etc. You would probably want to get somebody who has done hundreds of these operations and is regarded as a leader in the profession. I know that Northwestern has at least one professor who fits this category. Perhaps the one you are already talking to to fits this category, also. The idea is to get several opinions, to make sure that they all seem to be pointing you in the same direction, and, if surgery is required, that you find the surgeon with the most skill and experience.

I'll be hoping that your current drug treatment will work, and that the tumor is benign. In the mean time, I hope you can gather some more expert opinion.

 
Old 01-28-2006, 08:45 AM   #3
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Re: We're Extremely Afraid and Not Sure What to Do Now....(very long)

Ya you're right. I'm sure no one here or anyone they know has had their entire prostate removed on the basis of a benign prostate biopsy. I think my husband wants to be on the safe side and have it all removed anyway. His doc feels pretty strongly on his recommendation.

 
Old 01-28-2006, 12:55 PM   #4
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Re: We're Extremely Afraid and Not Sure What to Do Now....(very long)

At 40 years of age and facing what your husband is facing, I would exhaust every additional opinion I could find until I could perceive a consensus among the doctors consulted. Forty is far too young (actually, any age is too young) to forego the very possible loss of further sexual activity. Further, if you find that there's no other option than surgery, make certain that the surgeon is well known for his success in 1.) getting any/all possibility of cancer out, and 2.) has an outstanding success ratio in maintaining the ability to perform sexually. Just because someone tells you they perform "nerve-sparing" surgery does not mean that the patient will be able to again function sexually. Once again, make certain no cancer remains; then try to make as certain as humanly possible that the ability to perform sexually will return. Good Luck! I'll be praying for you two!

 
Old 01-28-2006, 02:09 PM   #5
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Re: We're Extremely Afraid and Not Sure What to Do Now....(very long)

I agree with the posters, I would do research and tons of it looking for a doctor for a second, third etc. opinions. I have a neighbor who actually flew from Texas to have his surgery by a dr at Memorial Sloan Kettering hospital, also I would look into other large named reputable facilities, mayo clinic etc.
Try looking at prostate cancer sites on the web for more urologists in your area, one such site I came across is pcri, prostate cancer research institute they have some very helpful information and some listings of different doctors etc. That may be helpful for you.


A.

 
Old 01-29-2006, 03:40 PM   #6
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Re: We're Extremely Afraid and Not Sure What to Do Now....(very long)

I would go to the Mayo Clinic in Rochester, Minnesota and see Dr. Horst Zincke. He is listed as one of the top Urologist in the US. He did surgery on my 20 year old son for testicular cancer and my husband for prostate cancer. Both are cancer free.

 
Old 02-14-2006, 12:41 PM   #7
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Re: We're Extremely Afraid and Not Sure What to Do Now....(very long)

My husband went to see another surgeon for a 2nd opinion. This time he saw one who specializes in the Da Vinci Robotics technique(4 per week). Unfortuanately this doctor told my husband that he is NOT able to perform the procedure because the prostate mass is right up against the the rectum and it would be too great a risk of damaging the bowel. He said that my husband could end up with a colostomy if the rectal tissue or bowel was damaged. This surgeon said that he lacks the sensation of 'touch' when doing the Robotics technique and would not be able to tell how close he is to the rectal bowel tissue.

As a result my husband has decided to have an open prostatectomy on the 2nd of March with surgeon #1. Please pray for him and wish us well.

Last edited by LauraDan; 02-14-2006 at 12:47 PM.

 
Old 02-15-2006, 12:12 PM   #8
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Re: We're Extremely Afraid and Not Sure What to Do Now....(very long)

Please let us know how your husband is doing after surgery, and how things turn out on the final pathology report. I'll be hoping for the best possible outcomes.

 
Old 02-19-2006, 05:24 PM   #9
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bullun HB User
Re: We're Extremely Afraid and Not Sure What to Do Now....(very long)

I'll be thinking of your husband during this time and your family. Please keep us posted on his status. I hope his pain management goes well.

 
Old 03-09-2006, 05:12 PM   #10
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Re: We're Extremely Afraid and Not Sure What to Do Now....(very long)

Hubby had his radical prostatectomy on March 2nd. The pathology report is back and hubby's surgically removed prostate is benign!! We are so thankful. The surgeon said that reguardless if it was cancer or not, it needed to be completely removed since the tumor was so very large and growing into the rectal space.

Hubby was in surgery for 4 hours and in recovery room for 2 hours. While in surgery he received one unit of his own blood he donated. He had two IVs and an arterial line. When he finally came back to his room, he had oxygen on and had the foley catheter draining blood tinged urine.

The prostate appeared to be encapsulated and had two masses growing from it. One mass was on top of the other. At that point they weren't sure what these masses were but later would be slicing and dicing it and doing the proper tests to see if it is malignant. They also told me that his nerve bundles were spared! I knew hubby would be thrilled to hear that.

His incision begins at the bottom of his belly button and stops right above the base of his penis. His skin is closed with staples. Pain control has been the biggest obstacle because narcotics either make him have seizures, or make his throat close up or vomit. So instead he was given IV Toradol which is basically a high dose of Motrin and was being given Tylenol orally.

By 12:30am that night he was up walking in the halls and again at 5:30am. That next morning he was eating a regular breakfast and then a regular lunch. That afternoon the residents came to check on him and was amazed at his progress. He got to go home that day.

At home it was really rough without proper pain medicine. He's been very uncomfortable and Motrin and Tylenol wasn't cutting it too well. But it's been one week since the operation and he's doing much better now. Today is the first day he hasn't taken any Tylenol or Motrin. Bowel movements are painful even with stool softners but that's because of the close proximity of the tumor to the rectum.

Yesterday we went for a short walk in the neighborhood and will continue to do that and go a little farther each day. He had an episode a couple days ago in which a large amount of blood and urine leaked out around the outside of his catheter. After speaking to the urology office, we were told it is not uncommon and happens with bladder spasms. Most of his pain is in his perineal area now and less in the incision. He gets very uncomfortable when sitting on a firm chair.

The catheter and staples will be removed on March 14th during his first post op visit. We are so thankful he did well during surgery and that the tumor was benign. Never will we have to worry about that troublesome prostate ever again!

 
Old 03-10-2006, 07:07 PM   #11
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Re: We're Extremely Afraid and Not Sure What to Do Now....(very long)

I'm glad to hear your husband is back home and walking around. That catheter will indeed cause discomfort in the perineum, and it can refer pain elsewhere. I was kind of limping around while my catheter was in, and immediately after it was removed, I started walking normally. Boy, he sure went through the ringer with the long operation and then problems with the pain killers. I'm so glad to hear he's on the mend.

 
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