my worst nightmare

Angelica2003
Angelica2003 Member Posts: 20
edited March 2014 in Prostate Cancer #1
I was scared that the Dr we see today would try to talk my husband out of surgery.

Guess what it came true. I am sitting here typing this and can barly breath. He kept saying that it is so small, there is so little, you are so young, it will probably never grow, if it does it will never effect you. He kept saying, "lets do another PSA and biopsy" to check again. Ok. What the @#$# is the dr looking for? A biopsy can give false negatives. He may not biopsy the exact are or spot the other dr did prior. And the pain Brian was in after the biopsy and the blood. I cannot watch him go through that again. It is too hard. I have trouble sleeping at night. Dreams he is dead from this. Just to wait for more test results. Even a PSA can be false. I know you all will say, more tests the better, it is his body. Well after 18 years he is a part of me so in a sence it is my body as well.

Ok, then after I ran out of the room cause I could not listen anymore to him talking my husband into this. He said yes active servaliance and surgery are the only options. But he only was stressing the active sevailance one. Kept going on and on and on till I could not take it anymore. Anyways I basically RAN out of the room, to the social worker and had a nervious breakdown. To me active servailance is watching a person die slowly. I know, no one will agree. Of course my husband was eating it up and happy with the dr's talking. Anyways after 1/2 hour in the workers office I came out and there was Brian.

Brian was ticked that I left, and did not stay and listen. said there was GOOD news. That he is doing another PSA (that could come back normal, but that means nothing to me). Then he said the dr said that with the cancer being so small .4mm, that the biopsy probably removed the cancer......OOOOOOOHHHHHH MY G. I could not decide whether to laugh or cry. So I walked away. Did NOT want to hear more of what Dr said. "biopsy probably removed the cancer". But what about the other 1.3mm? He did not mention that. What about the high grade PIN. That usually turns to cancer? Hummm no mention of either. but "biopsy probably removed the cancer". I cannot get that out of my head....."biopsy probably removed the cancer". WOW maybe all guys should have a biopsy as treatment or an option to remove cancer. A person diagnosed with cancer has cancer.. that is it...period. And I will not trust any tests this Dr does. Cause PSA can go up and down with cancer. ANd a biopsy of the prostate is like throwing darts at a pea in a pillow and hoping to hit it. That is why there are false negatives.

SO now what. I can't do this. It is sooo hard. Especially when you do not trust the dr. I cannot just watch and wait for it to go sevirior. Or terminal. It is like watching a flower die. But in the end Brian said "I am PENCILED in for surgery in February". Ok is that an actual date or is it just a note for the month? What am I suppose to do? Honestly I just want to curl up somewhere and cry and scream. I cannot help how I feel. And I feel bad that I feel I cannot do this with him. But that is how I feel. Why would I want to just sit back and say.. ohh yippy "biopsy probably removed the cancer", lets just do another blood test and biopsy even though they could come back false negative...

Comments

  • JoeMac
    JoeMac Member Posts: 77
    My worst ...
    Aloha Angelica2003,
    Please go to the following web site
    http://www.ladies-prostate-forum.org/ladies/
    Please continue to seek help from the social worker/therapist.
    Brian needs you now more than ever.
    I know you do not like to hear this, but watchful waiting is a treatment methodology. It is not a death sentence.
    Another good web site is
    http://www.yananow.net/
    Web sites can help you understand what the doc's are saying, but ...BUT, the info used to make treatment decision must come from Brian's doc and he should get info from at least two oncologists before making his (yours also as he needs you to be a part of this) decision.
    Have faith, hope, & Love,
    Joe 67 Hamakua Coast Hawaii
  • Angelica2003
    Angelica2003 Member Posts: 20
    JoeMac said:

    My worst ...
    Aloha Angelica2003,
    Please go to the following web site
    http://www.ladies-prostate-forum.org/ladies/
    Please continue to seek help from the social worker/therapist.
    Brian needs you now more than ever.
    I know you do not like to hear this, but watchful waiting is a treatment methodology. It is not a death sentence.
    Another good web site is
    http://www.yananow.net/
    Web sites can help you understand what the doc's are saying, but ...BUT, the info used to make treatment decision must come from Brian's doc and he should get info from at least two oncologists before making his (yours also as he needs you to be a part of this) decision.
    Have faith, hope, & Love,
    Joe 67 Hamakua Coast Hawaii

    My Worst Nightmare
    You all have said great things. Some that made me cry but just for
    love not fear. I see 2 sides of surgery with my message and Active
    Servailiance. That will help. My husband read some of the posts last
    night. I will have him read the rest.

    BUT, here is an update...tada
    Last night I calmed myself down by saying "Marla you do not have
    nerviuos breakdowns for NO reason. I was confused and not looking at
    the big picture as to why I was upset. So why am I feeling this way??"
    After asking myself that and writing a letter to Brian. (we do that
    cause sometimes your words are not really heard. And it is a good
    comunication tool) I took a few deep breaths and REALLY started my
    head going FULL speed, and open. This is what I realized:

    Do I want him to have surgery?
    Yes. Why for peace of mind for both of us and better odds. I don't
    like to gamble and it is a gamble.
    No. Why, I do not like seeing my husband in pain and I don't want to
    have him inconstant or even somewhat or impotant, I like him this
    way. This is also a gamble.

    Do I want him to do active servaliance?
    Yes. Well dauh, they would anyways. He cannot get in tomorrow and
    they need to do further tests anyways. We may get better and more
    clear results. He may not need the surgery.
    No. I am scared and I don't like cancer. It spread. It kills. Plain
    and simple. The biopsy could have just hit the tip of the cancer
    cell. There could be more or bigger.

    Ok. Well right back to square #1. What should we do/ choose. So what
    else is wrong then with yesterday that sets me off so much?

    Well The Dr. did not give ANY pros to surgery. Knocked it whenever
    mentioned. (he is an urologist that can do surgery) So what is up?
    He gave Brian a 40% recovery from side effect of surgery. Ok 40% that
    means 60% good. You do not pass at school with those grades. So if
    that is HIS patients recovery rate. THAT IS BAD.
    He also said that there is NO way to do nerve sparing. That thay
    always get damaged. He does not do laprosopic and won't do it on
    Brian for this surgery. Says there is no difference in recovery rate,
    or impotance rate or inconstance. And he says doing it laproscopic
    will not save nerves. And there is NO dr that he would let do it on
    Brian. WHY DID HE SAY THAT?
    OK HAHAHAHA. This is a really far fetched and BAD BAD statements. I
    know from research and Brian talking to a 36 year old that you can do
    nerve sparing. And he has recovered just around a year. And research
    any you all agree there is differences. SO why is he making these
    statements and PUSHING servaliance?
    Well a day after Brian found out he had the cancer he wanted to
    commit suicide and took 3 of my STRONG sleeping meds. I took the
    bottle and locked it up. He was in deep depression. Later to find out
    why? He had not taken his depression meds for a few days. So he was
    not clearly thinking. Then the next day he talked to the 36 y/o and
    felt MUCH better. Plus he took his meds.
    Back to the WHY? I phoned the Dr.'s office out of fear and explained
    waht happened the night before and she got us in FAST. But when she
    told the Dr and sexual therapist, his appointment was made BEFORE he
    takes patients. First thing in the morning. So the dr knew about his
    attempt.
    Looking back, it clicked. The dr said all those things because he
    felt Brian could not handle any change mentally. So he was NOT BIAS.
    He did not really let us choose or speek. He wanted to control us and
    change our minds after talking to the 36 y/o and the research. He was
    going on what Brian did. Not these are your choices. What do you
    think, Brian and Marla.
    I also noticed during my visit before I had enough and left, he did
    not reach to shake my hand or ask my name, or really include me. He
    just focused on Brian. Plus he had me leave during the exam AFTER
    Brian said he wanted me to be present. Those things play BIG on
    trust. So right off the bat 5 mins into the meeting I was set off and
    did not trust him. You need to trust the dr. whether you are the
    patient or the spouce. Trust is BIG for me.
    So when I sat down, calmed down, and started digging. I came up with.
    We NEED a REAL opinion from a Dr that does not know about the
    attempt. So I thaught, Dr. Ritchie (he did the biopsy and was the 1st
    dr.) knows how our emotions are, understands why Brian and I are like
    glue. Includes me in the discussion. We all 3 sit arround his desk.
    Not me off to the side. And we may not like his jekel and hyde, but
    we TRUST him. And he listens and is bias.
    So I mentioned all this to Brian this morning. And he really
    understood and saw what I saw. Even started to remember all the bad
    things he said to surgery. Not giving it a plus at all. After that we
    came up with:

    #1.Let's etch-a-sketch yesterday right out of our heads. It did not
    happen, we did not see him, he does not exsist.
    #2. We have an appointment today with dr.ritchie and he knows nothing
    about what happened. And he knows us and understand why I am the way
    I am and same with Brian. And he will be bias.
    #3. Oviuosly we would not get to surgery for months, so during that
    time lets do 2 PSA per month, meet once a month, do an MRI and or CT
    scan.
    #4. Ask if he can refer us to an Onocology Surgion. But only to get
    his point of view on the test results. Here in Manitoba, the health
    care system is cheep buggers. They do not want to do surgery if it
    can be avoided. So the surgion may be against or for surgery. But
    even if we decide AS, lets get a surgions point of view.
    #5. What about other options, why is Brian not a candidate? Dr.
    ritchie said there are differnt types or radiation and surgery. So
    some dr does the laproscopic.

    Anyways sorry this was SOOO long but, just wanted you all that
    replied see the BIG picture and let you know, we are not rushing into
    this even though we (more me) are scared unless a PSA or test say
    NOW. And thechnically evey man has done AS, cause you wait and have
    further testing. Because there could be a change in either direction.
    That is what AS is all about.

    Again THANKS. You all have been a big help, bigger then you know.
  • larry59
    larry59 Member Posts: 41
    your nightmare
    Angelica what you need most is good information about prostate cancer, and you and Brian must have a doctor that you both can trust. That's most important. Please try to quickly get a copy of Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. He's the top prostate doctor in the U.S., professor of urology at Johns Hopkins in Baltimore, and he developed the nerve-sparing surgery. His book is very thourough on all aspects of prostate problems and cancer. Try your local library, or you can buy it on the Web. I found a used copy for $1, plus $5 shipping.
    If I had read his book years ago I would not be terminal now. Information will really help set you mind to ease because there are so many treatment options especially in the early stages. Prostate cancer is usually extremely slow to progress, that's why "watchful waiting" with occasional PSA tests is one of the good options for many men.
    All urologists are surgeons and if Brian's is not recommending immediate surgery that's a good thing. And biopsies should no be bad if urologist supplies valium or a local pain shot.
    Please keep your spirits up, Brian needs your support but you need to take care of yourself too. I hope this helps you. I think you sent me your email address and I sent mine to you. We can talk that way if you would prefer.
  • Angelica2003
    Angelica2003 Member Posts: 20
    larry59 said:

    your nightmare
    Angelica what you need most is good information about prostate cancer, and you and Brian must have a doctor that you both can trust. That's most important. Please try to quickly get a copy of Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. He's the top prostate doctor in the U.S., professor of urology at Johns Hopkins in Baltimore, and he developed the nerve-sparing surgery. His book is very thourough on all aspects of prostate problems and cancer. Try your local library, or you can buy it on the Web. I found a used copy for $1, plus $5 shipping.
    If I had read his book years ago I would not be terminal now. Information will really help set you mind to ease because there are so many treatment options especially in the early stages. Prostate cancer is usually extremely slow to progress, that's why "watchful waiting" with occasional PSA tests is one of the good options for many men.
    All urologists are surgeons and if Brian's is not recommending immediate surgery that's a good thing. And biopsies should no be bad if urologist supplies valium or a local pain shot.
    Please keep your spirits up, Brian needs your support but you need to take care of yourself too. I hope this helps you. I think you sent me your email address and I sent mine to you. We can talk that way if you would prefer.

    email
    I do not remember if I got your email addy...what is it again??
  • larry59
    larry59 Member Posts: 41

    email
    I do not remember if I got your email addy...what is it again??

    you need information, maybe I can help
    Angelica2003, you can email me at [email protected] Information is what all patients need and its the hardest thing to get. I am not a expert but I sure have learned a lot about prostate cancer in the 6 months since I was diagnosed as terminal. I still recommend Dr. Patrick Walsh's book "Guide to Surviving Prostate Cancer" He is the top urology guy at Johns Hopkins in Baltimore and probably the best expert in the U.S. He developed the nerve sparing surgery technique that has saved so many cancer patients so much grief.
    But if you just want to ask a question, rant, rave or whatever don't hesitate to write me. I can't help myself but I am trying to help anyone else as much as possible.
    Good luck to Brian and you, hope to hear from you. Larry59
  • whubbs
    whubbs Member Posts: 77
    larry59 said:

    you need information, maybe I can help
    Angelica2003, you can email me at [email protected] Information is what all patients need and its the hardest thing to get. I am not a expert but I sure have learned a lot about prostate cancer in the 6 months since I was diagnosed as terminal. I still recommend Dr. Patrick Walsh's book "Guide to Surviving Prostate Cancer" He is the top urology guy at Johns Hopkins in Baltimore and probably the best expert in the U.S. He developed the nerve sparing surgery technique that has saved so many cancer patients so much grief.
    But if you just want to ask a question, rant, rave or whatever don't hesitate to write me. I can't help myself but I am trying to help anyone else as much as possible.
    Good luck to Brian and you, hope to hear from you. Larry59

    Info here too
    I'm almost 4 weeks after my robotic prostate surgery in NYC.
    I'd be happy to share what I know (you do become an expert fast) and share my experience.
    Feel free to email me at [email protected] (be sure to put 'prostate' in the title as I do get alot of junkmail that I delete.
    i'd also be happy to give you my # for you to call me if you'd like as well.
    Good luck!
    (The Walsh book is a must have item, also google videos put out by Ash Tewari (my surgeon),
    they are very informative.
  • larry59
    larry59 Member Posts: 41
    whubbs said:

    Info here too
    I'm almost 4 weeks after my robotic prostate surgery in NYC.
    I'd be happy to share what I know (you do become an expert fast) and share my experience.
    Feel free to email me at [email protected] (be sure to put 'prostate' in the title as I do get alot of junkmail that I delete.
    i'd also be happy to give you my # for you to call me if you'd like as well.
    Good luck!
    (The Walsh book is a must have item, also google videos put out by Ash Tewari (my surgeon),
    they are very informative.

    hi whubbs
    Hope your surgery went well. I have heard all good things about the robotic surgery and I hope you did good. Please let me know how you are doing. I know the worst aftereffects are impotence and incontinence but there are a ot of treatments for both now. Best to you....Larry
  • shipjim
    shipjim Member Posts: 137

    My Worst Nightmare
    You all have said great things. Some that made me cry but just for
    love not fear. I see 2 sides of surgery with my message and Active
    Servailiance. That will help. My husband read some of the posts last
    night. I will have him read the rest.

    BUT, here is an update...tada
    Last night I calmed myself down by saying "Marla you do not have
    nerviuos breakdowns for NO reason. I was confused and not looking at
    the big picture as to why I was upset. So why am I feeling this way??"
    After asking myself that and writing a letter to Brian. (we do that
    cause sometimes your words are not really heard. And it is a good
    comunication tool) I took a few deep breaths and REALLY started my
    head going FULL speed, and open. This is what I realized:

    Do I want him to have surgery?
    Yes. Why for peace of mind for both of us and better odds. I don't
    like to gamble and it is a gamble.
    No. Why, I do not like seeing my husband in pain and I don't want to
    have him inconstant or even somewhat or impotant, I like him this
    way. This is also a gamble.

    Do I want him to do active servaliance?
    Yes. Well dauh, they would anyways. He cannot get in tomorrow and
    they need to do further tests anyways. We may get better and more
    clear results. He may not need the surgery.
    No. I am scared and I don't like cancer. It spread. It kills. Plain
    and simple. The biopsy could have just hit the tip of the cancer
    cell. There could be more or bigger.

    Ok. Well right back to square #1. What should we do/ choose. So what
    else is wrong then with yesterday that sets me off so much?

    Well The Dr. did not give ANY pros to surgery. Knocked it whenever
    mentioned. (he is an urologist that can do surgery) So what is up?
    He gave Brian a 40% recovery from side effect of surgery. Ok 40% that
    means 60% good. You do not pass at school with those grades. So if
    that is HIS patients recovery rate. THAT IS BAD.
    He also said that there is NO way to do nerve sparing. That thay
    always get damaged. He does not do laprosopic and won't do it on
    Brian for this surgery. Says there is no difference in recovery rate,
    or impotance rate or inconstance. And he says doing it laproscopic
    will not save nerves. And there is NO dr that he would let do it on
    Brian. WHY DID HE SAY THAT?
    OK HAHAHAHA. This is a really far fetched and BAD BAD statements. I
    know from research and Brian talking to a 36 year old that you can do
    nerve sparing. And he has recovered just around a year. And research
    any you all agree there is differences. SO why is he making these
    statements and PUSHING servaliance?
    Well a day after Brian found out he had the cancer he wanted to
    commit suicide and took 3 of my STRONG sleeping meds. I took the
    bottle and locked it up. He was in deep depression. Later to find out
    why? He had not taken his depression meds for a few days. So he was
    not clearly thinking. Then the next day he talked to the 36 y/o and
    felt MUCH better. Plus he took his meds.
    Back to the WHY? I phoned the Dr.'s office out of fear and explained
    waht happened the night before and she got us in FAST. But when she
    told the Dr and sexual therapist, his appointment was made BEFORE he
    takes patients. First thing in the morning. So the dr knew about his
    attempt.
    Looking back, it clicked. The dr said all those things because he
    felt Brian could not handle any change mentally. So he was NOT BIAS.
    He did not really let us choose or speek. He wanted to control us and
    change our minds after talking to the 36 y/o and the research. He was
    going on what Brian did. Not these are your choices. What do you
    think, Brian and Marla.
    I also noticed during my visit before I had enough and left, he did
    not reach to shake my hand or ask my name, or really include me. He
    just focused on Brian. Plus he had me leave during the exam AFTER
    Brian said he wanted me to be present. Those things play BIG on
    trust. So right off the bat 5 mins into the meeting I was set off and
    did not trust him. You need to trust the dr. whether you are the
    patient or the spouce. Trust is BIG for me.
    So when I sat down, calmed down, and started digging. I came up with.
    We NEED a REAL opinion from a Dr that does not know about the
    attempt. So I thaught, Dr. Ritchie (he did the biopsy and was the 1st
    dr.) knows how our emotions are, understands why Brian and I are like
    glue. Includes me in the discussion. We all 3 sit arround his desk.
    Not me off to the side. And we may not like his jekel and hyde, but
    we TRUST him. And he listens and is bias.
    So I mentioned all this to Brian this morning. And he really
    understood and saw what I saw. Even started to remember all the bad
    things he said to surgery. Not giving it a plus at all. After that we
    came up with:

    #1.Let's etch-a-sketch yesterday right out of our heads. It did not
    happen, we did not see him, he does not exsist.
    #2. We have an appointment today with dr.ritchie and he knows nothing
    about what happened. And he knows us and understand why I am the way
    I am and same with Brian. And he will be bias.
    #3. Oviuosly we would not get to surgery for months, so during that
    time lets do 2 PSA per month, meet once a month, do an MRI and or CT
    scan.
    #4. Ask if he can refer us to an Onocology Surgion. But only to get
    his point of view on the test results. Here in Manitoba, the health
    care system is cheep buggers. They do not want to do surgery if it
    can be avoided. So the surgion may be against or for surgery. But
    even if we decide AS, lets get a surgions point of view.
    #5. What about other options, why is Brian not a candidate? Dr.
    ritchie said there are differnt types or radiation and surgery. So
    some dr does the laproscopic.

    Anyways sorry this was SOOO long but, just wanted you all that
    replied see the BIG picture and let you know, we are not rushing into
    this even though we (more me) are scared unless a PSA or test say
    NOW. And thechnically evey man has done AS, cause you wait and have
    further testing. Because there could be a change in either direction.
    That is what AS is all about.

    Again THANKS. You all have been a big help, bigger then you know.

    Robotics
    My doc didn't want to do lapro either he only did the cut and stitch kind. Turns out it's all he knew. I found a robotic guy, met him and was done and home in a week.. Got the cath out in 10 days (normal) wore diapers then pads for a while now little leakage. Not much for sex after 3 yres but I'm alive and can do anything I want. I looked at seeds,hormones etc but once you do them surgery is virtually not available due to tissue damage.
    It ain't the end of life but it may be a bit different. He's young lots of changes will come in the next few years so who knows what will be available in the after market for us survivors. The first thing to do is survive.

    Get on with it!
  • Angelica2003
    Angelica2003 Member Posts: 20
    larry59 said:

    your nightmare
    Angelica what you need most is good information about prostate cancer, and you and Brian must have a doctor that you both can trust. That's most important. Please try to quickly get a copy of Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. He's the top prostate doctor in the U.S., professor of urology at Johns Hopkins in Baltimore, and he developed the nerve-sparing surgery. His book is very thourough on all aspects of prostate problems and cancer. Try your local library, or you can buy it on the Web. I found a used copy for $1, plus $5 shipping.
    If I had read his book years ago I would not be terminal now. Information will really help set you mind to ease because there are so many treatment options especially in the early stages. Prostate cancer is usually extremely slow to progress, that's why "watchful waiting" with occasional PSA tests is one of the good options for many men.
    All urologists are surgeons and if Brian's is not recommending immediate surgery that's a good thing. And biopsies should no be bad if urologist supplies valium or a local pain shot.
    Please keep your spirits up, Brian needs your support but you need to take care of yourself too. I hope this helps you. I think you sent me your email address and I sent mine to you. We can talk that way if you would prefer.

    nightmare
    We got 2 other opinions from drs with more then 20 - 30 years experience. The one that suggeted WW has only 4 years and I do not trust him. Neither does Brian. After seeing the other 2 drs Brian decided on surgery. Waiting is just too stressfull, we have enough of that in our lives. But don't we all.
  • LennyK
    LennyK Member Posts: 2
    shipjim said:

    Robotics
    My doc didn't want to do lapro either he only did the cut and stitch kind. Turns out it's all he knew. I found a robotic guy, met him and was done and home in a week.. Got the cath out in 10 days (normal) wore diapers then pads for a while now little leakage. Not much for sex after 3 yres but I'm alive and can do anything I want. I looked at seeds,hormones etc but once you do them surgery is virtually not available due to tissue damage.
    It ain't the end of life but it may be a bit different. He's young lots of changes will come in the next few years so who knows what will be available in the after market for us survivors. The first thing to do is survive.

    Get on with it!

    Lapro
    Hi Jim,

    I am writing for my fiance, Len. He had robotic surgery 3 years ago. We've tried medication, viagra, cialis, the pump, but the erection doesn't last long at all. The dr. said the next thing is injections. I would like to try a different dr. He seems like he was good with the surgery, excellent ratings, but not so interested in going ahead with injection or implant.

    It's really hard to know what to say to Len. I love him so much, he's always making comments about me leaving him, because he's not a man anymore.

    Any advice about what to say to him? This is the first time I replied to anyone. Thanks, Patti