Newbie's Wife - just diagnosed 3 days ago

mrshisname
mrshisname Member Posts: 186
edited March 2014 in Prostate Cancer #1
My husband was diagnosed Friday after a biopsy on 2/9. His gleeson is a 3+3 or 6. Prostate size is 27mm (not enlarged). Only 1 of 12 samples positive, one other one is suspicious. PSA was as high as 4.3, it came down to 3.8 recently. I was shocked his biopsy came back positive.
Our urologist is doing HIFU in mexico, or can do DaVinci robotic procedure here. He also wants us to get a second opinion. He also referred us to a radiation oncologist to talk about that option.
At first we were all for the HIFU, but the more I read the more I think 'buyer beware'. The DaVinci sounds great, but spoke with a friend whose husband had it 9 months ago and he is impotent.
I never realized how frustrating this disease could be. At least if a woman has a hysterectomy for cancer she can still be continent and have sex. This is such a blow to a man to have to look at the potential for side effects!
Can people post here and tell me pros and cons of DaVinci vs. HIFU, particularly, your own experiences and results (are you incontinent or impotent after the procedure)?? I am also looking for statistical data but haven't found too much on the web.
Since I am a RN my hubbie wants me to do the research and then give him info and he'll make final decision. I just want him to not have any regrets about what he chooses.
We do feel so very blessed this was caught so early!!
«1

Comments

  • Trew
    Trew Member Posts: 931 Member
    Right on!
    Mrs, you have it right on as far as side effects and what a man and his wife face with PC. But take hope, you have options and your husband is a lot better off than mnay of us. And you owe it to yourselves to go to the Loma Linda Proton site and request the free book and DVD on proton therapy. It is possible your husband could survive this cancer attack with all systems intact. Proton therapy is worth looking into.

    Search Loma Linda Proton Therapy and you should find it.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    Hi
    What is the age of your husband? Where are you located geographically? What is the involvemnet of the core that is positive?

    Your husbands number are very low, and he is a good candidate for any treatment option...All the doctors would like your husband.

    Your husband, has what is probably indolent cancer, that is not likely to spread, so active surveillance is a very good option....there have been studies done which will substantiate this decision......I made this decision one year ago...no side effects.

    It is a good idea to get a second opinion on the parrifin blocks of the biopsy so that there is no over or under treatment..you need to cotact an expert in the field such as dr eptein, johns hopkins.....it is covered by medical coverage.

    Active Surveillance at UCLA
    Diagnosed 3/09 for 66 birthday
    By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
    PSA's had been at 2.26/2.27 for a few years
    Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
    second opinion john hopkins
    4/09 MRI with spectroscopy, no nodule involvement, staged t1
    Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
    PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0
    Reaching one year aniversity of diagnosis
  • lewvino
    lewvino Member Posts: 1,010
    mrshisname.
    First welcome to

    mrshisname.
    First welcome to the forum and glad you found us.
    Second it is scary to go through and of course serious business. The good news is your husband has caught it early and can be treated. My Gleason was 7 PSA 5.3.
    I looked at all options including HIFU, radiation, Surgery, Seeds, etc. It is wise of your Doctor to recommend getting a second opinion. Read and study since this is the one disease where you can pick how you want to fight it. A surgeon will say go with Surgery a radiation Doct will say go with radiation etc. Is one better? They all have the same goal .....get rid of the cancer.

    If you haven't all ready bought some online books get some and research all the options.
    With that said.....I am age 55 and my first choices was Proton at Loma Linda California. Reason? My dad was treated there 11 years ago for his prostate cancer and is doing well. So when I found out that I had prostate cancer of course I researched that. I ended up going a different route since my insurance would not pay for Proton. I couldn't see paying that much money out of pocket.

    Seeds and traditional radiation.....talked to a Dr about that method and he only gave me a low percentage of the being cancer free in 10 years.

    I looked at HIFU and just didn't feel right about it..Not knocking it or anything since others claim to have great success with it.

    Surgery....I looked at traditional and Davinci. I ended up choosing Davinci. If your husband chooses Davinci get a Doctor that has done thousands not hundreds if possible. I could have used a local Dr. (only done a couple hundred) or a Doctor at Vanderbilt who has done over 2000 with the robot. I went for experience.

    Facts...hopefully the Doctor can perform nerve sparing. Won't know till he gets in there. My goal was to get the cancer out. (which they did) Found Out I have a positive margin (Means cancer went to the very edge of the surgical specimen sent to lab) Did cancer go beyond? Only time will tell but at 6 months my PSA is 0. If the PSA rises then I can start radiation as a back up plan. If radiation is done first then you don't have as many options to fight with if the cancer comes back.

    Fact....Yes your husband will have problems with erections and continence following surgery. That is because the nerve bundles controlling erections go along the outside of the prostate and the doctor has to seperate those tiny, tiny nerves, hopefully spare them, take out the prostate...cut the urinary tube in two places and sew it all back together. That is why I wanted Skill in my surgeon since the Robotic has a high learning curve.

    Many men overcome the incontance quickly, others take weeks to months to having followup surgeries.

    Many men can overcome the impotance by pills, vacuum devices, or shots (into the penis to give an erection).

    You are right it is a back decision. It is bad that a women has to have a breast removed.

    There are no promises with Davinci or any of the other treatments. My dad had proton and did great but after about 3 years he then lost the ability for erections.
    My thinking was I was 54 at time of surgery,,,In pretty good health and hoped for the best thinking I could hopefully overcome the side effects from surgery.

    For me I was dry (No pads needed 11 days after surgery) Consider my self very lucky when I read of other men still struggling after a year or more.

    Sexually I'm able to get an erection using Levitra. Not as good as before, pill gives me headaches and stuffy nose (But I take tylenol before which helps) and also take the tylenol the next day. The erections are not pre surgery level but I believe getting better with time. The Doctor spared 100 % of the one erection nerve bundle and only was able to spare 60% or so of the second nerve bundle since there were signs of cancer in it. So again I'm at 6 months post surgery and feel very lucky.

    Good luck to you and your husband.

    If he wants to talk offline or you want to talk with my wife...then drop as a note at [email protected]

    Larry and Beth
    Age 55 (My wife won't let me tell her age but she is younger then I am) LOL
    Gleason 3+4 (7)
    latest PSA 0
    Davinci Surgery at Vanderbilt, Nashville, Tn.
  • johndz
    johndz Member Posts: 33
    lewvino said:

    mrshisname.
    First welcome to

    mrshisname.
    First welcome to the forum and glad you found us.
    Second it is scary to go through and of course serious business. The good news is your husband has caught it early and can be treated. My Gleason was 7 PSA 5.3.
    I looked at all options including HIFU, radiation, Surgery, Seeds, etc. It is wise of your Doctor to recommend getting a second opinion. Read and study since this is the one disease where you can pick how you want to fight it. A surgeon will say go with Surgery a radiation Doct will say go with radiation etc. Is one better? They all have the same goal .....get rid of the cancer.

    If you haven't all ready bought some online books get some and research all the options.
    With that said.....I am age 55 and my first choices was Proton at Loma Linda California. Reason? My dad was treated there 11 years ago for his prostate cancer and is doing well. So when I found out that I had prostate cancer of course I researched that. I ended up going a different route since my insurance would not pay for Proton. I couldn't see paying that much money out of pocket.

    Seeds and traditional radiation.....talked to a Dr about that method and he only gave me a low percentage of the being cancer free in 10 years.

    I looked at HIFU and just didn't feel right about it..Not knocking it or anything since others claim to have great success with it.

    Surgery....I looked at traditional and Davinci. I ended up choosing Davinci. If your husband chooses Davinci get a Doctor that has done thousands not hundreds if possible. I could have used a local Dr. (only done a couple hundred) or a Doctor at Vanderbilt who has done over 2000 with the robot. I went for experience.

    Facts...hopefully the Doctor can perform nerve sparing. Won't know till he gets in there. My goal was to get the cancer out. (which they did) Found Out I have a positive margin (Means cancer went to the very edge of the surgical specimen sent to lab) Did cancer go beyond? Only time will tell but at 6 months my PSA is 0. If the PSA rises then I can start radiation as a back up plan. If radiation is done first then you don't have as many options to fight with if the cancer comes back.

    Fact....Yes your husband will have problems with erections and continence following surgery. That is because the nerve bundles controlling erections go along the outside of the prostate and the doctor has to seperate those tiny, tiny nerves, hopefully spare them, take out the prostate...cut the urinary tube in two places and sew it all back together. That is why I wanted Skill in my surgeon since the Robotic has a high learning curve.

    Many men overcome the incontance quickly, others take weeks to months to having followup surgeries.

    Many men can overcome the impotance by pills, vacuum devices, or shots (into the penis to give an erection).

    You are right it is a back decision. It is bad that a women has to have a breast removed.

    There are no promises with Davinci or any of the other treatments. My dad had proton and did great but after about 3 years he then lost the ability for erections.
    My thinking was I was 54 at time of surgery,,,In pretty good health and hoped for the best thinking I could hopefully overcome the side effects from surgery.

    For me I was dry (No pads needed 11 days after surgery) Consider my self very lucky when I read of other men still struggling after a year or more.

    Sexually I'm able to get an erection using Levitra. Not as good as before, pill gives me headaches and stuffy nose (But I take tylenol before which helps) and also take the tylenol the next day. The erections are not pre surgery level but I believe getting better with time. The Doctor spared 100 % of the one erection nerve bundle and only was able to spare 60% or so of the second nerve bundle since there were signs of cancer in it. So again I'm at 6 months post surgery and feel very lucky.

    Good luck to you and your husband.

    If he wants to talk offline or you want to talk with my wife...then drop as a note at [email protected]

    Larry and Beth
    Age 55 (My wife won't let me tell her age but she is younger then I am) LOL
    Gleason 3+4 (7)
    latest PSA 0
    Davinci Surgery at Vanderbilt, Nashville, Tn.

    Good comment!
    Hi Larry, I agree with you - If go with Davinci try to get the experienced doctor if you can -After surgery you still have other treatment options if you need to! Every person have different body, health condition plus PC level. Each one have different level of side affects. Also depend on how good nerve sparing system can be saved? Side effect of Davinci will be heavily sometime at the begining after surgery but cab be recover gardually sometime back to normal - Radiation do not have side effect heavily after begining of the treatment but slowly get worse after long term treatment. Only hope is everything will going well during surgery as expected so the side affect will be minimal? Support wife will be very helful to make all the research and support me to make decision.Just a lucky if you get a little side effect!

    I'm 49 - gleason score 6 = PC localized - 9 weeks after surgery - 1 pad a day with little leakage when first sit down on the chair or do something quick. ED no problem - After 1st PSA report = Zero - I feel I'm just lucky in the hand of good surgeon and have PC earlier detection! Hope will be dry soon! Getting better every day - still have some mild pain around belly sometime - just uncomfortable after long walking excercise. Just want to wish all of us will get out all side effects as soon as possible! Thanks all our young and big brothers in this forum for good supports and info. to help me gone through my tough time since October 09.
    This is what i'm thinking
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    Larry's got the routine down lots of good comments
    The age of your husband does make a difference....impotence is less in the younger man especially in an experienced da vinci surgeon. I had both nerves 100% spared. Cancer was contained with no positive margins and my first PSA was 0 non-detectable...I am in the same club with Larry my southern friend. I am nearly to total continence...only dribbles now during the day...completely dry through the night and with viagra, a pump and a good partner am making real headway with erections. My most frustrating part is leaking urine at orgasm. Doc says that will stop. I am on day 55 from my surgery on 12/29/09. Here is my path and stats to date below. Good luck with your choice and I pray you get a cure.

    Randy in Indy

    52 years old
    PSA 9/09 7.25
    PSA 10/09 6.125
    Diagnosis confirmed Oct 27, 2009
    8 Needle Biopsy = 5 clear , 3 postive
    <20%, 10%, 10%
    Gleason Score (3+3) 6 in all positive cores
    11/09 Second Opinion on Biopsy slides from Dr. Koch
    (4+3) = 7 5%
    (3+4) = 7 10%
    (3+4) = 7 10%
    Endorectol MRI with Coil - Indicated the Palpal tumor was Organ confined
    da Vinci 12/29/09 - Dr. Hollensbee & Scott
    Post Surgery Pathology:
    Prostate size 5 x 4 x 3.5 cm Weight: 27 g
    Gleason: Changed to (3+4) = 7
    Primary Pattern 3, 80%
    Secondary Pattern 4, 18%
    Tertiary Pattern 5, 2%
    Tumor Quantitation:
    Greatest Dimension, Largest tumor focus: 19 mm
    Additional Dimension 18 x 15 mm
    Location, largest tumor focus: Right posterior quadrant
    Multifocality: Yes
    Greatest dimension second largest focus 10 mm
    Location: second largest focus: Left Posterior quadrant
    Extraprostatic extension: Yes
    If yes, focal or non-focal: Nonfocal
    If yes: location(s) right and left antero-lateral
    Seminal vesicle invasion: No
    Cancer at surgical margin: No
    If no, closest distance with location: less than 1 mm, right posterior quadrant
    Apex involvement: No
    Bladder involvement: NO
    Lymph-vascular invasion: No
    Perineural invasion: Yes
    Lymph nodes: 9 from right pelvic 0/9 positive
    Stage: pT3a, pNo, pMX
    All nerves sparred - found two additional pudendal arteries

    FIRST PSA TEST 2-11-10 <0.1 NONDETECTABLE
  • jminnj
    jminnj Member Posts: 129

    Larry's got the routine down lots of good comments
    The age of your husband does make a difference....impotence is less in the younger man especially in an experienced da vinci surgeon. I had both nerves 100% spared. Cancer was contained with no positive margins and my first PSA was 0 non-detectable...I am in the same club with Larry my southern friend. I am nearly to total continence...only dribbles now during the day...completely dry through the night and with viagra, a pump and a good partner am making real headway with erections. My most frustrating part is leaking urine at orgasm. Doc says that will stop. I am on day 55 from my surgery on 12/29/09. Here is my path and stats to date below. Good luck with your choice and I pray you get a cure.

    Randy in Indy

    52 years old
    PSA 9/09 7.25
    PSA 10/09 6.125
    Diagnosis confirmed Oct 27, 2009
    8 Needle Biopsy = 5 clear , 3 postive
    <20%, 10%, 10%
    Gleason Score (3+3) 6 in all positive cores
    11/09 Second Opinion on Biopsy slides from Dr. Koch
    (4+3) = 7 5%
    (3+4) = 7 10%
    (3+4) = 7 10%
    Endorectol MRI with Coil - Indicated the Palpal tumor was Organ confined
    da Vinci 12/29/09 - Dr. Hollensbee & Scott
    Post Surgery Pathology:
    Prostate size 5 x 4 x 3.5 cm Weight: 27 g
    Gleason: Changed to (3+4) = 7
    Primary Pattern 3, 80%
    Secondary Pattern 4, 18%
    Tertiary Pattern 5, 2%
    Tumor Quantitation:
    Greatest Dimension, Largest tumor focus: 19 mm
    Additional Dimension 18 x 15 mm
    Location, largest tumor focus: Right posterior quadrant
    Multifocality: Yes
    Greatest dimension second largest focus 10 mm
    Location: second largest focus: Left Posterior quadrant
    Extraprostatic extension: Yes
    If yes, focal or non-focal: Nonfocal
    If yes: location(s) right and left antero-lateral
    Seminal vesicle invasion: No
    Cancer at surgical margin: No
    If no, closest distance with location: less than 1 mm, right posterior quadrant
    Apex involvement: No
    Bladder involvement: NO
    Lymph-vascular invasion: No
    Perineural invasion: Yes
    Lymph nodes: 9 from right pelvic 0/9 positive
    Stage: pT3a, pNo, pMX
    All nerves sparred - found two additional pudendal arteries

    FIRST PSA TEST 2-11-10 <0.1 NONDETECTABLE</p>

    I agree completely with the
    I agree completely with the statement above. The choice is really a personal one and you have to look at all the options and determine what is best. The age of your husband is a factor in the option you choose. I am 47 and was diagnosed back in November. My pre and post op stats are below. I met with my surgeon, and then met with a urologist/oncologist as Memorial Sloan Kettering. We weighed all the options,(my wife and I) and came to the conclusion that for me Robotic Surgery was the best option. It really came down to the post surgery treatment and what ifs (if my PSA starts going up after surgery, what are the next steps). Surgery, at least I felt, gave me more options down the road if I needed them.

    I am about a month removed from the surgery and awaiting my first post op PSA test result. I have had some minor incontinence issues (mostly stress related leakage). The surgeon was able to spare the nerves so my erectile function is slowly starting to return. I will not comment on the other options out there, except to say that they are all good options, but for me, surgery was the best way to go.

    I wish you and your husband all the best. God Bless.
    Joe

    47 years old
    PSA 2.9 (which I was told was high for my age)
    Exam was normal, no increased size, lumps.
    Biopsy 11/7/2009
    10 samples taken
    5 Benign
    Right Lateral Mid- Small Acinar Proliferation - Suspicious
    Right Base - Adenomatous and Fibromuscular Hyperplasia
    Right Mid - Small Acinar Proliferation - Suspicious
    Right Apex - Prostatic Adenocarcinoma 3+3- 6 on Gleason scale involving 10% of the tissue
    Left Mid - Small Acinar Proliferation - Suspicious

    Post Op
    Gleason 3+4= 7
    Tumor Confined within the Prostate Gland
    Resection Margins and Seminal Vesicles Free of Tumor
    Tumor Quantitaion approximately 35%
  • 2ndBase
    2ndBase Member Posts: 220
    Consider All Options
    My psa was 24 and gleason of 9 at age 52 and radiation treatmentrs killed All the cancer in my prostate. A lot less side effects too. I had to go with radiation due to it having already spread. The choice is personal but surgery is not any better than radiation in getting the cancer killed. It sounds like your case was discovered very early and any treatment you choose will work so think about the side-effects because the next day it will be to late to change your mind. All the best.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    2ndBase said:

    Consider All Options
    My psa was 24 and gleason of 9 at age 52 and radiation treatmentrs killed All the cancer in my prostate. A lot less side effects too. I had to go with radiation due to it having already spread. The choice is personal but surgery is not any better than radiation in getting the cancer killed. It sounds like your case was discovered very early and any treatment you choose will work so think about the side-effects because the next day it will be to late to change your mind. All the best.

    FYI on Da Vinci Surgery
    I just had a fully usable erection with no leaks at Orgasm on a 1/4 pill of viagra 100mg.

    My stats are up above in this post - Day 56 following Da Vinci with zero cancer - Excellent surgeon team.

    randy in indy
  • HIFUgal
    HIFUgal Member Posts: 58

    FYI on Da Vinci Surgery
    I just had a fully usable erection with no leaks at Orgasm on a 1/4 pill of viagra 100mg.

    My stats are up above in this post - Day 56 following Da Vinci with zero cancer - Excellent surgeon team.

    randy in indy

    Please take your time
    I hope you've taken the time to read the thread that I posted most of my info on: http://csn.cancer.org/node/177783

    My very best advice is for you to wait. With your husband's stats he has plenty of time, prostate cancer is the slowest growing of all cancers. Your husband is where my husband was 10 or 15 years ago.

    HIFU will be approved within 2 years, and it is being perfected everyday, they just introduced a new machine. It could be sooner, heck I don't know, I just know that most of the clinical trials are over, and doctors are predicting it's approval. I could send you lots of info, don't let people scare you. We are so happy, not one minute of pain or incontinence, although a couple guys had limp erections for a spell, but all of our friends who had HIFU feel the same, thrilled.

    There are some awful stories of men who had HIFU, but those are a long time ago, before Scionti perfected the treatment. And, there are men out there trying to scare people away, the surgey industry is not going to be happy about the loss of revenue, when HIFU is approved it will be the cheapest route, and no post appointments, just the PSA test.

    You shouldn't be in a panic.
  • mrshisname
    mrshisname Member Posts: 186
    Trew said:

    Right on!
    Mrs, you have it right on as far as side effects and what a man and his wife face with PC. But take hope, you have options and your husband is a lot better off than mnay of us. And you owe it to yourselves to go to the Loma Linda Proton site and request the free book and DVD on proton therapy. It is possible your husband could survive this cancer attack with all systems intact. Proton therapy is worth looking into.

    Search Loma Linda Proton Therapy and you should find it.

    Trew
    My hubbie is totally against any kind of radiation. He has been working in industrial settings all his life and can't get past the radiation aspect. He won't even consider it.
  • mrshisname
    mrshisname Member Posts: 186

    Hi
    What is the age of your husband? Where are you located geographically? What is the involvemnet of the core that is positive?

    Your husbands number are very low, and he is a good candidate for any treatment option...All the doctors would like your husband.

    Your husband, has what is probably indolent cancer, that is not likely to spread, so active surveillance is a very good option....there have been studies done which will substantiate this decision......I made this decision one year ago...no side effects.

    It is a good idea to get a second opinion on the parrifin blocks of the biopsy so that there is no over or under treatment..you need to cotact an expert in the field such as dr eptein, johns hopkins.....it is covered by medical coverage.

    Active Surveillance at UCLA
    Diagnosed 3/09 for 66 birthday
    By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
    PSA's had been at 2.26/2.27 for a few years
    Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
    second opinion john hopkins
    4/09 MRI with spectroscopy, no nodule involvement, staged t1
    Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
    PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0
    Reaching one year aniversity of diagnosis

    Hopeful and Opt...
    Thanks for your comments. My hubbie is 51. I just found out today that my son's urologist in Indianapolis where he goes to college and (Michael Koch) reviews tissue slides, so they are being sent up there and we are going there on 3/16 for a third opinion. He is the department chair at IU Medical Center and he does second opinion review of tissue slides. He is also a DaVinci surgeon. We are getting a second opinion on Monday from a local DaVinci surgeon, Bradley Bell in Louisville, Kentucky.
    My husband does not want to wait. He can't stand the idea of having cancer in him. He is really leaning towards DaVinci.
    We are meeting with his urologist again on Friday.
  • mrshisname
    mrshisname Member Posts: 186
    lewvino said:

    mrshisname.
    First welcome to

    mrshisname.
    First welcome to the forum and glad you found us.
    Second it is scary to go through and of course serious business. The good news is your husband has caught it early and can be treated. My Gleason was 7 PSA 5.3.
    I looked at all options including HIFU, radiation, Surgery, Seeds, etc. It is wise of your Doctor to recommend getting a second opinion. Read and study since this is the one disease where you can pick how you want to fight it. A surgeon will say go with Surgery a radiation Doct will say go with radiation etc. Is one better? They all have the same goal .....get rid of the cancer.

    If you haven't all ready bought some online books get some and research all the options.
    With that said.....I am age 55 and my first choices was Proton at Loma Linda California. Reason? My dad was treated there 11 years ago for his prostate cancer and is doing well. So when I found out that I had prostate cancer of course I researched that. I ended up going a different route since my insurance would not pay for Proton. I couldn't see paying that much money out of pocket.

    Seeds and traditional radiation.....talked to a Dr about that method and he only gave me a low percentage of the being cancer free in 10 years.

    I looked at HIFU and just didn't feel right about it..Not knocking it or anything since others claim to have great success with it.

    Surgery....I looked at traditional and Davinci. I ended up choosing Davinci. If your husband chooses Davinci get a Doctor that has done thousands not hundreds if possible. I could have used a local Dr. (only done a couple hundred) or a Doctor at Vanderbilt who has done over 2000 with the robot. I went for experience.

    Facts...hopefully the Doctor can perform nerve sparing. Won't know till he gets in there. My goal was to get the cancer out. (which they did) Found Out I have a positive margin (Means cancer went to the very edge of the surgical specimen sent to lab) Did cancer go beyond? Only time will tell but at 6 months my PSA is 0. If the PSA rises then I can start radiation as a back up plan. If radiation is done first then you don't have as many options to fight with if the cancer comes back.

    Fact....Yes your husband will have problems with erections and continence following surgery. That is because the nerve bundles controlling erections go along the outside of the prostate and the doctor has to seperate those tiny, tiny nerves, hopefully spare them, take out the prostate...cut the urinary tube in two places and sew it all back together. That is why I wanted Skill in my surgeon since the Robotic has a high learning curve.

    Many men overcome the incontance quickly, others take weeks to months to having followup surgeries.

    Many men can overcome the impotance by pills, vacuum devices, or shots (into the penis to give an erection).

    You are right it is a back decision. It is bad that a women has to have a breast removed.

    There are no promises with Davinci or any of the other treatments. My dad had proton and did great but after about 3 years he then lost the ability for erections.
    My thinking was I was 54 at time of surgery,,,In pretty good health and hoped for the best thinking I could hopefully overcome the side effects from surgery.

    For me I was dry (No pads needed 11 days after surgery) Consider my self very lucky when I read of other men still struggling after a year or more.

    Sexually I'm able to get an erection using Levitra. Not as good as before, pill gives me headaches and stuffy nose (But I take tylenol before which helps) and also take the tylenol the next day. The erections are not pre surgery level but I believe getting better with time. The Doctor spared 100 % of the one erection nerve bundle and only was able to spare 60% or so of the second nerve bundle since there were signs of cancer in it. So again I'm at 6 months post surgery and feel very lucky.

    Good luck to you and your husband.

    If he wants to talk offline or you want to talk with my wife...then drop as a note at [email protected]

    Larry and Beth
    Age 55 (My wife won't let me tell her age but she is younger then I am) LOL
    Gleason 3+4 (7)
    latest PSA 0
    Davinci Surgery at Vanderbilt, Nashville, Tn.

    Larry
    Thanks for your post. Gave us lots of good info. He is really leaning toward the DaVinci. Likes the idea of being able to know exactly where the cancer is and the pathology. You gave us some hope there...and we appreciate it. This forum is the best thing I've found on the net!
    Maria (49 and proud of it) and Jesse (51)
  • mrshisname
    mrshisname Member Posts: 186

    Larry's got the routine down lots of good comments
    The age of your husband does make a difference....impotence is less in the younger man especially in an experienced da vinci surgeon. I had both nerves 100% spared. Cancer was contained with no positive margins and my first PSA was 0 non-detectable...I am in the same club with Larry my southern friend. I am nearly to total continence...only dribbles now during the day...completely dry through the night and with viagra, a pump and a good partner am making real headway with erections. My most frustrating part is leaking urine at orgasm. Doc says that will stop. I am on day 55 from my surgery on 12/29/09. Here is my path and stats to date below. Good luck with your choice and I pray you get a cure.

    Randy in Indy

    52 years old
    PSA 9/09 7.25
    PSA 10/09 6.125
    Diagnosis confirmed Oct 27, 2009
    8 Needle Biopsy = 5 clear , 3 postive
    <20%, 10%, 10%
    Gleason Score (3+3) 6 in all positive cores
    11/09 Second Opinion on Biopsy slides from Dr. Koch
    (4+3) = 7 5%
    (3+4) = 7 10%
    (3+4) = 7 10%
    Endorectol MRI with Coil - Indicated the Palpal tumor was Organ confined
    da Vinci 12/29/09 - Dr. Hollensbee & Scott
    Post Surgery Pathology:
    Prostate size 5 x 4 x 3.5 cm Weight: 27 g
    Gleason: Changed to (3+4) = 7
    Primary Pattern 3, 80%
    Secondary Pattern 4, 18%
    Tertiary Pattern 5, 2%
    Tumor Quantitation:
    Greatest Dimension, Largest tumor focus: 19 mm
    Additional Dimension 18 x 15 mm
    Location, largest tumor focus: Right posterior quadrant
    Multifocality: Yes
    Greatest dimension second largest focus 10 mm
    Location: second largest focus: Left Posterior quadrant
    Extraprostatic extension: Yes
    If yes, focal or non-focal: Nonfocal
    If yes: location(s) right and left antero-lateral
    Seminal vesicle invasion: No
    Cancer at surgical margin: No
    If no, closest distance with location: less than 1 mm, right posterior quadrant
    Apex involvement: No
    Bladder involvement: NO
    Lymph-vascular invasion: No
    Perineural invasion: Yes
    Lymph nodes: 9 from right pelvic 0/9 positive
    Stage: pT3a, pNo, pMX
    All nerves sparred - found two additional pudendal arteries

    FIRST PSA TEST 2-11-10 <0.1 NONDETECTABLE</p>

    Randy in Indy
    Hi Randy. we've been intrigued by your posts since you are in Indy. We are just across the Ohio from Louisville, in Southern Indiana.
    I had a DUH! moment today and looked up my son's urologist in Indy (son goes to IUPUI). It is Michael Koch. I know that you know who he is. Question:
    Did you consider him for your surgery and why did you go with the group you chose.
    We are seeing a second opinion locally (Bradley Bell, a daVinci surgeon) and then Dr. Koch will review hubby's slides and we will do consult with him on 3/16.
    Thoughts? Feelings? Appreciated!!
  • mrshisname
    mrshisname Member Posts: 186

    FYI on Da Vinci Surgery
    I just had a fully usable erection with no leaks at Orgasm on a 1/4 pill of viagra 100mg.

    My stats are up above in this post - Day 56 following Da Vinci with zero cancer - Excellent surgeon team.

    randy in indy

    Randy
    WOW
  • mrshisname
    mrshisname Member Posts: 186
    HIFUgal said:

    Please take your time
    I hope you've taken the time to read the thread that I posted most of my info on: http://csn.cancer.org/node/177783

    My very best advice is for you to wait. With your husband's stats he has plenty of time, prostate cancer is the slowest growing of all cancers. Your husband is where my husband was 10 or 15 years ago.

    HIFU will be approved within 2 years, and it is being perfected everyday, they just introduced a new machine. It could be sooner, heck I don't know, I just know that most of the clinical trials are over, and doctors are predicting it's approval. I could send you lots of info, don't let people scare you. We are so happy, not one minute of pain or incontinence, although a couple guys had limp erections for a spell, but all of our friends who had HIFU feel the same, thrilled.

    There are some awful stories of men who had HIFU, but those are a long time ago, before Scionti perfected the treatment. And, there are men out there trying to scare people away, the surgey industry is not going to be happy about the loss of revenue, when HIFU is approved it will be the cheapest route, and no post appointments, just the PSA test.

    You shouldn't be in a panic.

    HIFU gal
    I doubt my hubbie will want to wait 2 years for HIFU.
    We are no way in a panic right now. Taking our time and getting a second and third opinion, and meeting with our doc who suggested HIFU on Friday.
    I'm glad your hubbie had a great experience.
    Unfortunately HIFU is out of reach for most of us folks.
  • mrshisname
    mrshisname Member Posts: 186
    jminnj said:

    I agree completely with the
    I agree completely with the statement above. The choice is really a personal one and you have to look at all the options and determine what is best. The age of your husband is a factor in the option you choose. I am 47 and was diagnosed back in November. My pre and post op stats are below. I met with my surgeon, and then met with a urologist/oncologist as Memorial Sloan Kettering. We weighed all the options,(my wife and I) and came to the conclusion that for me Robotic Surgery was the best option. It really came down to the post surgery treatment and what ifs (if my PSA starts going up after surgery, what are the next steps). Surgery, at least I felt, gave me more options down the road if I needed them.

    I am about a month removed from the surgery and awaiting my first post op PSA test result. I have had some minor incontinence issues (mostly stress related leakage). The surgeon was able to spare the nerves so my erectile function is slowly starting to return. I will not comment on the other options out there, except to say that they are all good options, but for me, surgery was the best way to go.

    I wish you and your husband all the best. God Bless.
    Joe

    47 years old
    PSA 2.9 (which I was told was high for my age)
    Exam was normal, no increased size, lumps.
    Biopsy 11/7/2009
    10 samples taken
    5 Benign
    Right Lateral Mid- Small Acinar Proliferation - Suspicious
    Right Base - Adenomatous and Fibromuscular Hyperplasia
    Right Mid - Small Acinar Proliferation - Suspicious
    Right Apex - Prostatic Adenocarcinoma 3+3- 6 on Gleason scale involving 10% of the tissue
    Left Mid - Small Acinar Proliferation - Suspicious

    Post Op
    Gleason 3+4= 7
    Tumor Confined within the Prostate Gland
    Resection Margins and Seminal Vesicles Free of Tumor
    Tumor Quantitaion approximately 35%

    Thanks Joe
    Thanks Joe, great to hear your story and wow, you sure are young. Hubbie got to talk by phone last night to a friend of a friend, her hubbie was 44 at diagnosis.
    He opted for DaVinci, lives in Texas.
    We are going back to original urologist on Friday, then to second opinion on Monday, third opinion on 3/16.
    We do have an appointment set up with a radiation oncologist but hubby does not want to go, wants me to cancell. I haven't done that just yet.
  • bdhilton
    bdhilton Member Posts: 803 Member

    FYI on Da Vinci Surgery
    I just had a fully usable erection with no leaks at Orgasm on a 1/4 pill of viagra 100mg.

    My stats are up above in this post - Day 56 following Da Vinci with zero cancer - Excellent surgeon team.

    randy in indy

    You give many hope here…
    I am happy for your many positive (or should I say negative :-)) responses to your post surgery and recovery thus far… You give many hope here…
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member

    Randy in Indy
    Hi Randy. we've been intrigued by your posts since you are in Indy. We are just across the Ohio from Louisville, in Southern Indiana.
    I had a DUH! moment today and looked up my son's urologist in Indy (son goes to IUPUI). It is Michael Koch. I know that you know who he is. Question:
    Did you consider him for your surgery and why did you go with the group you chose.
    We are seeing a second opinion locally (Bradley Bell, a daVinci surgeon) and then Dr. Koch will review hubby's slides and we will do consult with him on 3/16.
    Thoughts? Feelings? Appreciated!!

    Mrshisname - Sorry, didn't see your post right away
    Ok, I liked Dr. Koch very much...Of the two people in Indy that would do Da Vinci he and the one I choose where recomended by many, many people...either he should do it or Hollensbe and Scott. Dr. Koch has been approached by Hollensbe to do a research blind study on implanting slings during da vinci having independant follow-up with patients some who got sling and some who did not years after surgery to see the results of incontinece..he's not sure he was going to do it with them or not. I am almost totally continent now (day 55) and I had a sling implanted during my da vinci. Oh how I digress and ramble...Back to your question.... I decided not to go with Koch because hes in a teaching enviornment at IU (Indiana University) and although he assured me that residents and students would be in the OR...they (residents or fellows) would not be doing any part of the da vinci surgery that would jeapordize the outcome. Things started going through my mind like..ok...this fellow or resident my be at the bedside doing the fulcrum moves in one of the holes (far right side surgery port) for Dr. Koch back at the console - what if he slips pushes too hard and I have a hernea and need further surgery later...hey I have a very active imagination and that's just me...so my paranoid thoughts probably made that decision to go with the team that stays the same... I just wasn't confortable with allowing students/residents/fellows learning on my cancer Operation...I respect Dr. Koch and his results speak for his competence and premier skill level and someone has to teach others to be great surgeons...I just did not want to be in that position where I would not have any control or anyone left watching on my behalf - a personal thing. One thing ...I think if you look at his results on my biopsey slides vs. the lab used by who I went with for the surgery...Dr. Koch's analysis was closer to the post op pathology in cancer grade. Get his oppinion and please post your thoughts afterwards.

    Hope this helped and did not further confuse.

    Randy in Indy
  • mrshisname
    mrshisname Member Posts: 186

    Mrshisname - Sorry, didn't see your post right away
    Ok, I liked Dr. Koch very much...Of the two people in Indy that would do Da Vinci he and the one I choose where recomended by many, many people...either he should do it or Hollensbe and Scott. Dr. Koch has been approached by Hollensbe to do a research blind study on implanting slings during da vinci having independant follow-up with patients some who got sling and some who did not years after surgery to see the results of incontinece..he's not sure he was going to do it with them or not. I am almost totally continent now (day 55) and I had a sling implanted during my da vinci. Oh how I digress and ramble...Back to your question.... I decided not to go with Koch because hes in a teaching enviornment at IU (Indiana University) and although he assured me that residents and students would be in the OR...they (residents or fellows) would not be doing any part of the da vinci surgery that would jeapordize the outcome. Things started going through my mind like..ok...this fellow or resident my be at the bedside doing the fulcrum moves in one of the holes (far right side surgery port) for Dr. Koch back at the console - what if he slips pushes too hard and I have a hernea and need further surgery later...hey I have a very active imagination and that's just me...so my paranoid thoughts probably made that decision to go with the team that stays the same... I just wasn't confortable with allowing students/residents/fellows learning on my cancer Operation...I respect Dr. Koch and his results speak for his competence and premier skill level and someone has to teach others to be great surgeons...I just did not want to be in that position where I would not have any control or anyone left watching on my behalf - a personal thing. One thing ...I think if you look at his results on my biopsey slides vs. the lab used by who I went with for the surgery...Dr. Koch's analysis was closer to the post op pathology in cancer grade. Get his oppinion and please post your thoughts afterwards.

    Hope this helped and did not further confuse.

    Randy in Indy

    For Randy
    Being a nurse and familiar with the teaching environment, that is my concern too, that a resident will botch the surgery... I've had surgeries myself where a resident was involved (emergent repair of a severe femur fracture and the resident, although 'supervised', malrotated my femur on the repair rod).
    We will definitely talk in depth with Dr. Koch about our concern. Having met him several times I liked him personally, liked how he spoke with my son and his treatment of my son, however, that was 'only' kidney stones.
    Loved to read the path on your surgery versus original biopsy results and Koch's interpretation.
    Knowing hubby, he may want to consult with your surgeons as well. Question: have your surgeons and Koch done about the same number of DaVinci's? And, where was your surgery performed.
    RE Dr. Bell in this area: my husband originally saw him when he had an episode of hematuria about 3 years ago. He did a cysto in office without properly numbing hubbie and poor hubbie was complaining, Bell told him to 'suck it up' and completed the procedure. However he is the most experienced DaVinci surgeon in this immediate area, but personality wise is a jerk. However hubby actually wants to go talk to him again and I am supportive of whatever hubbie wants.
    (hubby changed urologists after the non-numb cysto disaster)
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member

    Thanks Joe
    Thanks Joe, great to hear your story and wow, you sure are young. Hubbie got to talk by phone last night to a friend of a friend, her hubbie was 44 at diagnosis.
    He opted for DaVinci, lives in Texas.
    We are going back to original urologist on Friday, then to second opinion on Monday, third opinion on 3/16.
    We do have an appointment set up with a radiation oncologist but hubby does not want to go, wants me to cancell. I haven't done that just yet.

    Mrshisname - Oncologist
    GO SEE HIM - Do NOT cancel - educate yourself and husband. It's an Option. My oncologist for second opinion here in Indy was DR. Dougan - He told me "I'd do surgery and come back to me if there are any positive margins or further cancer to kill." He was trained at one of the primer radiation hospitals in US General Mass. Your urologist is doing you right by recommending to get a second, third opinion. Noting your biopsy results it would suggest you do have time...however know this also. My biopsy only showed cancer in the right lobe 3 of 8 samples taken 4 from both sides. POST OP - I had cancer in both sides and tumors in both sides less than 1mm from breaking through the capsle and becoming a positive margin...scary...I was positively detected on OCT 27th and had surgery on 12/29. My first biopsy results would have suggested I had plenty of time...PSA's 7.25 and 6.17....soooooo... not everyone is the same nor is their cancer nor is it exactly what the biopsy results would indicate...again though looking back at my stats...Dr. Koch's lab used for second opinion was closer than the original lab to the actual post op path report.... more severe grading and perhaps a tad less volume. Here is what I do reco for your husband. Get and MRI with Coil - spectroscopy if you can..just another test and I like recomending that to everyone because whY? 1. can tell if the capsle has been broken through which would most likely alter your choices of method and 2. Armed with yet more information to make a better treatment decision. YOu may have heard this in one of my other posts...that the orginal surgeon signed up with in the same group I ended with...said no need for MRI with coil...would not change the surgery plan...he point blank told me I will swing wide and take the right side nerve...hey the nodgle was on that side...but hey wait a minute after the surgery...post op path...it was on both sides....If he knew that he would have taken both sides....now I have no nerves ...no erections...I"M 52..and far from dead especially in that area..hey one of the best reasons to fight to stay alive as far as I am concerned...that, a good beer and good food...I am happy for life. Ok as I slap myself to stay back on point here... so...the surgeon I chose...Says "Randy you get an MRI coil so I can see if its escaped...then when I am in there doing the surgery if the nerve peels off easily..nothing holding on to it...I'm saving it...both sides....Not only did he save both nerves 100%...he found what he said he has only seen in 3 or 4 other men...two extra pudental arteries running on the topside of the penis feeding blood....he smiled you and Annette will thank me for finding and saving them....Yeap...in my book...He's my type of ROCK STAR SURGEON...I love the guy! And wha-la...on day 56 post da vinci..usable erection...no leak on orgasm...it just doesn't get any better than that!!!!!!!!!!!!!!!!

    Crazy... Randy in indy - yeah...that's "good crazy" not "bad crazy"

    We need smiles & some laughter here...I try to provide that from time to time...even though I am a rambling horrible writer.