Worried about Waiting!

deecaf1

Hi, I'm a breast cancer survivor and am now supporting my husband who was diagnosed a month ago with prostate cancer. His Gleason score was 6-7 and he has surgery scheduled for Aug. 28th. I know prostate cancer can be slow growing but I am worried with his Gleason score it could spread while he is waiting. He is having a fairly new non-invasive laporoscopic procedure which utilizes computerized robotics...I know his doctor is swamped with men in line to get this done. We feel this is a good procedure and my husband doesn't seem worried about waiting......but I am. Please advise. Thank you! Dee

jackb

Hi - this is from Jean, Jack's wife. Jack had a radical prostectomy in 10/00. His internist first became suspicious in 01/00 when Jack's PSA showed a jump from 2.12 the prior year to 3.38. He was told to wait six months, and at that time have another PSA test. It was a l-o-n-g six months for me - but he refused to consider/believe that he might have cancer, which was good, I guess. Of course, I pretended that I wasn't worried. Anyway, he ultimately underwent a biopsy in 08/00, which showed cancer in one of 12 samples. He had to wait until 10/00 for the operation, because the swelling had to go down, and because he had to donate 4 pints of blood for his operation. Your husband is SO lucky that he is undergoing the laproscopic procedure. Johns Hopkins wasn't doing that two years ago. Anyway, I expressed my concerns about waiting to all the doctors along the way from January through October. They all assured me that the wait was NOT going to cause a problem. Jack's Gleason score was 6. His cancer was in both lobes of the prostate, but contained within the prostate. So far, so good. His PSA one year after the operation was undetectible.

I think you can probably rest easy that the wait will not cause spread of the disease. I know that I worried so much about every aspect of Jack's disease that I made myself sick - especially since I was trying to act like I wasn't worried. You are probably doing the same thing. If you are still worried, tell the doctor of your concerns - or someone on his staff (I know how hard it is to get the doctor's time). Probably they will have factual information that will ease your concerns. Good luck to you and your husband. Please let us know how he does. You are both in my prayers.

Jean

deecaf1

jackb said:

Hi - this is from Jean, Jack's wife. Jack had a radical prostectomy in 10/00. His internist first became suspicious in 01/00 when Jack's PSA showed a jump from 2.12 the prior year to 3.38. He was told to wait six months, and at that time have another PSA test. It was a l-o-n-g six months for me - but he refused to consider/believe that he might have cancer, which was good, I guess. Of course, I pretended that I wasn't worried. Anyway, he ultimately underwent a biopsy in 08/00, which showed cancer in one of 12 samples. He had to wait until 10/00 for the operation, because the swelling had to go down, and because he had to donate 4 pints of blood for his operation. Your husband is SO lucky that he is undergoing the laproscopic procedure. Johns Hopkins wasn't doing that two years ago. Anyway, I expressed my concerns about waiting to all the doctors along the way from January through October. They all assured me that the wait was NOT going to cause a problem. Jack's Gleason score was 6. His cancer was in both lobes of the prostate, but contained within the prostate. So far, so good. His PSA one year after the operation was undetectible.

I think you can probably rest easy that the wait will not cause spread of the disease. I know that I worried so much about every aspect of Jack's disease that I made myself sick - especially since I was trying to act like I wasn't worried. You are probably doing the same thing. If you are still worried, tell the doctor of your concerns - or someone on his staff (I know how hard it is to get the doctor's time). Probably they will have factual information that will ease your concerns. Good luck to you and your husband. Please let us know how he does. You are both in my prayers.

Jean

Hi Jean,
I want to thank you for the quick response to my question. I was typing you a response and lost it so it may still show up somewhere. Thank you, you have definitely helped ease my worry. You're right, I have been trying to keep my husband, Nick, from knowing I'm so worried. I definitely don't want to go behind his back and call the doctor with questions. That is why I came into this discussion group. When going through my breast cancer treatment and recovery I met many wonderful women through the bc discussions online here and felt that I could find support here with our prostate cancer fight.
I'm so glad you and your husband got through it okay and he's doing so well. I'll keep you posted on Nick's surgery, etc.
Take care, Dee

jackb

deecaf1 said:

Hi Jean,
I want to thank you for the quick response to my question. I was typing you a response and lost it so it may still show up somewhere. Thank you, you have definitely helped ease my worry. You're right, I have been trying to keep my husband, Nick, from knowing I'm so worried. I definitely don't want to go behind his back and call the doctor with questions. That is why I came into this discussion group. When going through my breast cancer treatment and recovery I met many wonderful women through the bc discussions online here and felt that I could find support here with our prostate cancer fight.
I'm so glad you and your husband got through it okay and he's doing so well. I'll keep you posted on Nick's surgery, etc.
Take care, Dee

Dee,

I'm willing to bet that you will hear from more partners of prostate cancer victims who will tell you the same thing - that it almost always IS a slow-growing disease. If you are interested in a good book, I'd suggest "Dr. Patrick Walsh's Guide to Surviving Prostate Cancer." The amazon.com link for a review of this book is http://www.amazon.com/exec/obidos/ASIN/0446526401/qid=1026008186/sr=2-1/ref=sr_2_1/102-9804429-6580153 Dr. Walsh is head of the urology department at Johns Hopkins University Hospital in Baltimore. This book is very informative and covers topics pre-diagnosis, treatment, and post-treatment. It was published August 2001. Another book which I want to read (it will be published this August...what is it about August and prostate cancer books???!!!) is "In Sickness & in Health: A Love Story." The amazon.com link for a review is: Sthttp://www.amazon.com/exec/obidos/ASIN/1579545521/qid=1026008416/sr=1-44/ref=sr_1_44/102-9804429-6580153

Since you are a cancer survivor yourself, you probably know that it's much harder when someone you love has a medical problem than when you yourself do. I know you're scared. The hardest part, after learning the diagnosis, is the waiting, because you imagine all kinds of stuff. I know exactly what you're going through. Can I ask what hospital is performing the laproscopic surgery? Boy, I wish that had been available for Jack. What's the recovery expected to be like? Does he have to be hospitalized for long? You know, sometimes you think medical science never makes any progress, but this is proof it does. The radical prostatectomy is such a major operation. One of the toughest things Jack had to deal with afterward was his lack of strength. He had a hard time with that, because he's a police officer and is used to feeling strong. He said he felt so vunerable for a long time after the surgery knowing that all it would take would be a punch to the incision area for someone to get the best of him. Actually, he went back to work too soon, but psychologically, it was the best thing he could have done for himself. (If you want to know more about Jack's background, just click on his name on the message.)

Take care and cheer up - those stupid cancer cells are gonna get their little butts kicked soon!

Jean

deecaf1

jackb said:

Dee,

I'm willing to bet that you will hear from more partners of prostate cancer victims who will tell you the same thing - that it almost always IS a slow-growing disease. If you are interested in a good book, I'd suggest "Dr. Patrick Walsh's Guide to Surviving Prostate Cancer." The amazon.com link for a review of this book is http://www.amazon.com/exec/obidos/ASIN/0446526401/qid=1026008186/sr=2-1/ref=sr_2_1/102-9804429-6580153 Dr. Walsh is head of the urology department at Johns Hopkins University Hospital in Baltimore. This book is very informative and covers topics pre-diagnosis, treatment, and post-treatment. It was published August 2001. Another book which I want to read (it will be published this August...what is it about August and prostate cancer books???!!!) is "In Sickness & in Health: A Love Story." The amazon.com link for a review is: Sthttp://www.amazon.com/exec/obidos/ASIN/1579545521/qid=1026008416/sr=1-44/ref=sr_1_44/102-9804429-6580153

Since you are a cancer survivor yourself, you probably know that it's much harder when someone you love has a medical problem than when you yourself do. I know you're scared. The hardest part, after learning the diagnosis, is the waiting, because you imagine all kinds of stuff. I know exactly what you're going through. Can I ask what hospital is performing the laproscopic surgery? Boy, I wish that had been available for Jack. What's the recovery expected to be like? Does he have to be hospitalized for long? You know, sometimes you think medical science never makes any progress, but this is proof it does. The radical prostatectomy is such a major operation. One of the toughest things Jack had to deal with afterward was his lack of strength. He had a hard time with that, because he's a police officer and is used to feeling strong. He said he felt so vunerable for a long time after the surgery knowing that all it would take would be a punch to the incision area for someone to get the best of him. Actually, he went back to work too soon, but psychologically, it was the best thing he could have done for himself. (If you want to know more about Jack's background, just click on his name on the message.)

Take care and cheer up - those stupid cancer cells are gonna get their little butts kicked soon!

Jean

Hi Jean,
Thank you for the information..I'll definitely check into them all.
The surgery Nick is having will be done at San Ramon Regional Medical Center in San Ramon, CA. Compared to the regular prostatectomy, patients having this procedure have less blood loss, less pain, less time in the hospital, and a faster recovery, enabling them to resume normal activities in a remarkably shor time. The hospital stay is approx. 1 1/2 to 2 days and the catheter is supposed to be in about 7-10 days. He has to rest a few days but then can get up and about and walk as much as he wants. The data so far has shown less problem with incontenance and potency with this particular surgery. He'll be able to drive etc. but no lifting, golf or jogging.....or other strenous exercise.

I will read up on Jack's background....thank you again for all your encouragement.
Take care,
Dee

rogermoore

deecaf1 said:

Hi Jean,
Thank you for the information..I'll definitely check into them all.
The surgery Nick is having will be done at San Ramon Regional Medical Center in San Ramon, CA. Compared to the regular prostatectomy, patients having this procedure have less blood loss, less pain, less time in the hospital, and a faster recovery, enabling them to resume normal activities in a remarkably shor time. The hospital stay is approx. 1 1/2 to 2 days and the catheter is supposed to be in about 7-10 days. He has to rest a few days but then can get up and about and walk as much as he wants. The data so far has shown less problem with incontenance and potency with this particular surgery. He'll be able to drive etc. but no lifting, golf or jogging.....or other strenous exercise.

I will read up on Jack's background....thank you again for all your encouragement.
Take care,
Dee

Hi Dee,

I had a radical prostatectomy a year ago March 29. I know you and your husband are very apprehensive over this surgery, but I am living proof that it really is not that painful a surgery and recovery is over before you know it. My hospital stay and the length of time the catheter was in, is consistent with the time your surgeon indicated.

I have recovered totally with no problems with incontinance or potency. Just emphasize the importance of obeying the Dr.'s instructions to your husband.

Best of luck and know I am thinking of you.

Roger

deecaf1

rogermoore said:

Hi Dee,

I had a radical prostatectomy a year ago March 29. I know you and your husband are very apprehensive over this surgery, but I am living proof that it really is not that painful a surgery and recovery is over before you know it. My hospital stay and the length of time the catheter was in, is consistent with the time your surgeon indicated.

I have recovered totally with no problems with incontinance or potency. Just emphasize the importance of obeying the Dr.'s instructions to your husband.

Best of luck and know I am thinking of you.

Roger

Hi Roger,
Thank you SO much for your message, it was VERY good to hear from you! Do you mind my asking where you had your procedure done?
Thanks,
Dee

rogermoore

deecaf1 said:

Hi Roger,
Thank you SO much for your message, it was VERY good to hear from you! Do you mind my asking where you had your procedure done?
Thanks,
Dee

Dee,

Even tho we have a very good medical center here in Tupelo my wife and I, after a lot of research, elected to have Dr. Joseph Smith in Nashville's Vanderbilt Medical Center perform the surgery.

I can not say enough nice things about the facilities of Vanderbilt. However, I am sure there are other Hospitals throughout this great Nation with the same credentials.

If there are any other questions you or your husband have, please don't hesitate to e-mail me. My address is listed on this site.

Best of luck,

Roger

deecaf1

rogermoore said:

Dee,

Even tho we have a very good medical center here in Tupelo my wife and I, after a lot of research, elected to have Dr. Joseph Smith in Nashville's Vanderbilt Medical Center perform the surgery.

I can not say enough nice things about the facilities of Vanderbilt. However, I am sure there are other Hospitals throughout this great Nation with the same credentials.

If there are any other questions you or your husband have, please don't hesitate to e-mail me. My address is listed on this site.

Best of luck,

Roger

Roger,
Thank you for the information. We were told that not too many facilities perform this type of procedure and was curious where you had yours done. We are in San Ramon, CA and Nick will go to San Ramon Regional Medical Center. He has an excellent doctor and it is a good facility.
I appreciate the offer to answer questions, I'm sure we'll have some along the way and will look up your address. Thank you again!
Take care,
Dee

jimstacy

deecaf1 said:

Roger,
Thank you for the information. We were told that not too many facilities perform this type of procedure and was curious where you had yours done. We are in San Ramon, CA and Nick will go to San Ramon Regional Medical Center. He has an excellent doctor and it is a good facility.
I appreciate the offer to answer questions, I'm sure we'll have some along the way and will look up your address. Thank you again!
Take care,
Dee

Hi Dee!

I am Stacy, Jim's wife and he was diagnosed in June 2001 with PC at the ripe old age of 37. I completely understand your worries and restlessness. Jim had his radical prostatectomy done at Johns Hopkins by Dr. Patrick Walsh who is amazing. At first we had to wait 2 months before we could schedule the surgery and I was feeling the same way you were but he reassured us that he wouldn't make us wait if he was worried about it spreading. We got lucky and someone cancelled and we had the surgery within 10 days of our consultation. Anyway, we are extremely lucky that we caught it early and after the surgery and the pathology report came back clean he referred to this as just a "bump in the road". He just had his 1 year PSA marker and it was undetectable. We have been getting them done quarterly and now we will get them every 6 months.

Please let me know if there is anything I can help you with or answer any questions. I have exhausted myself in information about Prostate Cancer.

Sincerely,

Stacy Milanesi

deecaf1

jimstacy said:

Hi Dee!

I am Stacy, Jim's wife and he was diagnosed in June 2001 with PC at the ripe old age of 37. I completely understand your worries and restlessness. Jim had his radical prostatectomy done at Johns Hopkins by Dr. Patrick Walsh who is amazing. At first we had to wait 2 months before we could schedule the surgery and I was feeling the same way you were but he reassured us that he wouldn't make us wait if he was worried about it spreading. We got lucky and someone cancelled and we had the surgery within 10 days of our consultation. Anyway, we are extremely lucky that we caught it early and after the surgery and the pathology report came back clean he referred to this as just a "bump in the road". He just had his 1 year PSA marker and it was undetectable. We have been getting them done quarterly and now we will get them every 6 months.

Please let me know if there is anything I can help you with or answer any questions. I have exhausted myself in information about Prostate Cancer.

Sincerely,

Stacy Milanesi

Hi Stacy,
Thank you very much for your input....it does help to hear from those who have "been through it" already. I'm glad to hear Jim's surgery and recovery went well and he's doing so great now!

I appreciate your offer to help with any questions we have. I have met so many kind people on this cancer survivor network in the past few years. While Nick hasn't gotten on to it yet, I think he may change his mind after his surgery. He's been online downloading information and talking with guys he works with who have had prostate cancer & surgery but is not one to chat online yet.
Thank you again and take care!
Dee Williams

sidb

Hi Dee: You did not say what your husbands PSA is. Probably it is not going to be a problem waiting. However, in the meantime, I would check with the folks at Loma Linda University in California, where they do Proton Beam Radiation. It is highly accurate and has few side effects. It is just another of the alternatives you may want to consider. Contact them at 1-800-PROTONS. If any questions, let me know. Sid

nutt

Dee, not a doctor, just a recent survivor as your are but, I was given hormone as a means of reducing size of prostate, hormones supposedly made cancer cell more sucuptible to radiation (seed implant) and supposedly the cancer fed on testostrone which the hormone took away from the cancer to starve it while I was waiting treatment.
Hope this helps at least to discuss with your doctor.
Best regards to you both,
Joe