SCARED

Dennis C
Dennis C Member Posts: 8

 Hello everyone,

I just been diagnosed with prostate cancer. I received the results of my biopsy two weeks ago. For the last two weeks my head is been spinning! The more I read more confused I become.

My Gleason score is a seven. I made an appointment with an oncologist surgeon and a radiologist that I go and see in two weeks At MSK  

The side effects scare me! I’m 57 years old , My dad was 58 when he passed away from cancer.

To say I’m scared is an understatement I get a sense that it was caught early but I know I have to do something but the side effects scare me and not doing anything scares me more!

Comments

  • eonore
    eonore Member Posts: 174 Member
    edited March 2020 #2
    New diagnosis

    Hi Dennis,

    First thing you need to do is take a deep breath and calm down.  Prostate cancer is one of the most treatable cancers, and caught early is very curable.  Prostate cancer also moves very slowly, so you have plenty of time to research your treatment options and to make a decision.  Your best move is one you have done already, which is to get yourself to one of the best cancer centers in the world.  
    Your Gleason score of seven, whether a 4 plus 3, or a 3 plus 4, probably means treatment will be necessary.  Most men, whether surgery or radiation, tolerate treatment very well.  The most important thing you can do right now to prepare for treatment, is to get the best shape you can.  Lose weight if necessary, exercise, and address any other health concerns.  This will set you up for success.

    Just out of curiosity, what is your most recent Psa score?

     

    Eric

     

     

  • Steve1961
    Steve1961 Member Posts: 468 Member
    Don’t be scared

    I was in the same situation 2 years back ..I did the radiation and totally regret it ..from whst I learned with PC there are 2 plans .plan A surgery remove it deal with the incintinrnce for a bit and ED but in 5 weeks get a PSA test and you most likely will be below 0.1 ..which means cancer free ....then if u maybe have a reoccurance you have plan B which is radiation..a second chance for cure ..,look this up or ask your doctor ..you can have radiation after surgery but having surgery after radiation is only done in a few places across the country because it's very difficult ..also look up side effects of prostate radiation..a lot of them not good at all and I got all those side effects all of them ...I regret doing radiation......find a good surgeon one that's done over 1500 robotic surgeries ...and don't look too much into it like I did ....private message me if you want to know more ...good luck you will be great 

  • Dennis C
    Dennis C Member Posts: 8
    edited March 2020 #4
    eonore said:

    New diagnosis

    Hi Dennis,

    First thing you need to do is take a deep breath and calm down.  Prostate cancer is one of the most treatable cancers, and caught early is very curable.  Prostate cancer also moves very slowly, so you have plenty of time to research your treatment options and to make a decision.  Your best move is one you have done already, which is to get yourself to one of the best cancer centers in the world.  
    Your Gleason score of seven, whether a 4 plus 3, or a 3 plus 4, probably means treatment will be necessary.  Most men, whether surgery or radiation, tolerate treatment very well.  The most important thing you can do right now to prepare for treatment, is to get the best shape you can.  Lose weight if necessary, exercise, and address any other health concerns.  This will set you up for success.

    Just out of curiosity, what is your most recent Psa score?

     

    Eric

     

     

    Good Morning Eric

    Good Morning Eric

    Thank You for your response. I truly appreciate your words of encouragement. I just feel like I need to catch my breath.  

    My PSA over my last three blood test went 4.0, 4.7, 5.3. 

    Doctor told me to go to a urologist, I am glad I did 

    The “C” word is knee buckling when you hear it. 

    Did you have prostrate cancer also? How long does it take to heal, before you can do normal activities? Concer about being out of work for a long time  

    The bladder control concerns me, the sexual aspect is also concerning.

    all questions I will ask my Oncologist

  • eonore
    eonore Member Posts: 174 Member
    edited March 2020 #5
    New diagnosis

    Dennis,

    Now that you have been diagnosed, your doctors at Sloan will schedule some imaging to get a sense of whether the cancer is contained in the prostate.  Given your Psa, it it entirely likely that your disease is contained.  This means you will have to make a choice between surgery and some form of radiation.  The cure rates are similar, and most men tolerate either very well.  In terms of immediate side effects, surgery is definitely tougher, but recovery comes for most men.  I have had the pleasure of having had both surgery and radiation, and both are manageable.  The decision between the two may be dictated by medical reasons (in my case I had a hugely enlarged prostate causing urinary problems so it had to come out), or by preference.  Consult with both a surgeon and a radiation oncologist, do your research and weigh the pros and cons of each.

    The major thing to remember is that you will get through this, and more than likely will be cured.

    keep us posted,

    Eric

  • Dennis C
    Dennis C Member Posts: 8
    edited March 2020 #6
    eonore said:

    New diagnosis

    Dennis,

    Now that you have been diagnosed, your doctors at Sloan will schedule some imaging to get a sense of whether the cancer is contained in the prostate.  Given your Psa, it it entirely likely that your disease is contained.  This means you will have to make a choice between surgery and some form of radiation.  The cure rates are similar, and most men tolerate either very well.  In terms of immediate side effects, surgery is definitely tougher, but recovery comes for most men.  I have had the pleasure of having had both surgery and radiation, and both are manageable.  The decision between the two may be dictated by medical reasons (in my case I had a hugely enlarged prostate causing urinary problems so it had to come out), or by preference.  Consult with both a surgeon and a radiation oncologist, do your research and weigh the pros and cons of each.

    The major thing to remember is that you will get through this, and more than likely will be cured.

    keep us posted,

    Eric

    Good Morning Eric

    Good Morning Eric

    Thank you for your reply, tuly appreciate your insight. 

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    edited March 2020 #7
    Dennis C said:

    Good Morning Eric

    Good Morning Eric

    Thank you for your reply, tuly appreciate your insight. 

     

    dad

    Dennis, what TYPE of cancer did your dad die of ?  (I did not catch it being mentioned.)   If it was not prostate cancer, then it really has no relevance to your own prognosis, since most cancers occur fairly randomly, and a gene that will cause one type usually has no bearing on the development of other types.  If he did have prostate (PCa), then it is indicative that close relatives are more likely to be diagnosed with PCa, but you are well aware of that now.  Any sons or brothers that you may have should have their PSA tested routinely.

    A Gleason 7 is of course usually regarded as an intermediate grade, and very likely MSC will have you cancer-free within a few months, best case.  And hope for the best.  A great individual once noted, Fear is useless; what is needed is trust.   PCa diagnosis, in about 75% of all individuals who get it, does not cause their death, they die of other things.  And currently in the US, even men diagnosed with metastatic, Stage 4 disease have an average survival rate of over 5 years (and Stage 4 at diagnosis is pretty rare).   So overall, a PCa diagnosis today is not a death sentence, we have guys here surviving and having done well for over 20 years post-diagnosis.


    max

  • Dennis C
    Dennis C Member Posts: 8
    edited March 2020 #8

    dad

    Dennis, what TYPE of cancer did your dad die of ?  (I did not catch it being mentioned.)   If it was not prostate cancer, then it really has no relevance to your own prognosis, since most cancers occur fairly randomly, and a gene that will cause one type usually has no bearing on the development of other types.  If he did have prostate (PCa), then it is indicative that close relatives are more likely to be diagnosed with PCa, but you are well aware of that now.  Any sons or brothers that you may have should have their PSA tested routinely.

    A Gleason 7 is of course usually regarded as an intermediate grade, and very likely MSC will have you cancer-free within a few months, best case.  And hope for the best.  A great individual once noted, Fear is useless; what is needed is trust.   PCa diagnosis, in about 75% of all individuals who get it, does not cause their death, they die of other things.  And currently in the US, even men diagnosed with metastatic, Stage 4 disease have an average survival rate of over 5 years (and Stage 4 at diagnosis is pretty rare).   So overall, a PCa diagnosis today is not a death sentence, we have guys here surviving and having done well for over 20 years post-diagnosis.


    max

    Hi Max

    Hi Max

    Thank you for your reply, it wasn’t prostrate cancer that got my Dad but terminal bone cancer. He was of the generation that didn’t go to Doctors. I guess just for my own mental state of mind, Dad 58, me 57 just rattled me a bit. I appreciate the encouraging words and I feel Better mentaly prepared. I am looking forward to discussing my options with my oncologist at MSK. God Bless 

  • Josephg
    Josephg Member Posts: 372 Member
    New to Prostate Cancer

    Hi Dennis,

    Welcome to the Discussion Board that nobody wants to belong to.

    You have done two very positive things already.  (1) You are working with a world class cancer treatment center, and (2) you have reached out to folks here to understand their experiences, perspectives, and suggestions.

    We are not medical professionals, and thus we do not give medical advice, or attempt to be authoritative on cancer treatments of any kind for you.  What we are experts in, however, are our own patient experiences, and what we have learned from those experiences.  And, we freely share our experiences, so that folks like you have additional information to consider and evaluate, as you determine your own personal plans for your prostate cancer (PCa) journey.

    As folks have stated above, and you are currently experiencing, a cancer diagnosis can be devastating to an individual, and can cause some extremely high initial levels of stress to that person and those around him.  My initial advice to you is to fully accept the fact that you have PCa, as lots of diagnosed folks do not fully accept that reality, and it can cloud their objectiveness and judgment in making the decisions that need to be made by them on their PCa journey.  In addition, not fully accepting your diagnosis will certainly spill over into the relationships that you have with loved ones, family and friends.

    Once you have fully accepted the fact that you have PCa, I suggest that you then start collecting information from as many sources that you can, and build an inventory of knowledge on PCa itself, your specific diagnosis including the Gleason score and what it means, and the available treatment options and their probability of success as well as their potential side effects.  The medical professionals that you engage with, as well as folks on this Forum and others, can help you assemble and build upon your knowledge base.  As folks stated above, with PCa, you do have time to assemble your knowledge base and make decisions, based upon scientific facts and logic, that will be most appropriate for you.  Most important here, is that the decisions you make going forward need to be your decisions, and you need to own them.  And, once a decision is made and implemented, there is no looking backward, there is only looking forward.

    Surgery and radiation are the two most common treatment options available.  With radiation, hormonal therapy can also applied concurrent with radiation, as the data strongly suggests that the outcomes are better, when the two therapies are applied concurrently.  Make no mistake about it, there are side effects associated with each treatment option.  As a general statement, and understanding that each patient's experiences are somewhat unique, side effects associated with surgery are more pronounced early on, and side effects associated with radiation can appear several years later.  Regarding your question about treatments and the impact on your work, for me, I was back at work in less than a week following my surgery, and I never missed work, during my radiation and hormone treatments.  Again, each patient's experiences can differ.

    When engaging medical professionals and determining which of them you will remain a patient with, my suggerstion to you is to consider the documented experience of each medical professional.  In general, just like a car mechanic or plumber, the greater the experience in the profession, the greater the probability of a good outcome.  Do not be hesitant to ask straightforward questions of your medical professionals, regarding their experience (number of procedures performed, etc.) and succesful patient outcomes.  I would also suggest that you engage a medical Oncologist, in addition to surgeons and radiation Oncologists, as they generally do not have a pre-existing preference for either surgery or radiation treatment options.  Further, you can maintain a long-term engagement with the medical Oncologist along your PCa journey, if multiple treatment therapies are required along the journey.

    I can offer you a look at my PCa journey and experiences at this URL, and just scroll down to my January 17, 2020 update.  https://csn.cancer.org/node/299431

    I've had most of the side effects that you can imagine from each of my PCa treatments, and there are links in the referenced URL that describe my personal experiences with those treatments, if you want to peruse them.

    Last, and most important, I still have PCa, but I can assure you that I still maintain a normal fulfilling daily existence, and I still maintain a high quality of life.

    I wish you the best of outcomes on your PCa journey.  

  • Dennis C
    Dennis C Member Posts: 8
    edited March 2020 #10
    Josephg said:

    New to Prostate Cancer

    Hi Dennis,

    Welcome to the Discussion Board that nobody wants to belong to.

    You have done two very positive things already.  (1) You are working with a world class cancer treatment center, and (2) you have reached out to folks here to understand their experiences, perspectives, and suggestions.

    We are not medical professionals, and thus we do not give medical advice, or attempt to be authoritative on cancer treatments of any kind for you.  What we are experts in, however, are our own patient experiences, and what we have learned from those experiences.  And, we freely share our experiences, so that folks like you have additional information to consider and evaluate, as you determine your own personal plans for your prostate cancer (PCa) journey.

    As folks have stated above, and you are currently experiencing, a cancer diagnosis can be devastating to an individual, and can cause some extremely high initial levels of stress to that person and those around him.  My initial advice to you is to fully accept the fact that you have PCa, as lots of diagnosed folks do not fully accept that reality, and it can cloud their objectiveness and judgment in making the decisions that need to be made by them on their PCa journey.  In addition, not fully accepting your diagnosis will certainly spill over into the relationships that you have with loved ones, family and friends.

    Once you have fully accepted the fact that you have PCa, I suggest that you then start collecting information from as many sources that you can, and build an inventory of knowledge on PCa itself, your specific diagnosis including the Gleason score and what it means, and the available treatment options and their probability of success as well as their potential side effects.  The medical professionals that you engage with, as well as folks on this Forum and others, can help you assemble and build upon your knowledge base.  As folks stated above, with PCa, you do have time to assemble your knowledge base and make decisions, based upon scientific facts and logic, that will be most appropriate for you.  Most important here, is that the decisions you make going forward need to be your decisions, and you need to own them.  And, once a decision is made and implemented, there is no looking backward, there is only looking forward.

    Surgery and radiation are the two most common treatment options available.  With radiation, hormonal therapy can also applied concurrent with radiation, as the data strongly suggests that the outcomes are better, when the two therapies are applied concurrently.  Make no mistake about it, there are side effects associated with each treatment option.  As a general statement, and understanding that each patient's experiences are somewhat unique, side effects associated with surgery are more pronounced early on, and side effects associated with radiation can appear several years later.  Regarding your question about treatments and the impact on your work, for me, I was back at work in less than a week following my surgery, and I never missed work, during my radiation and hormone treatments.  Again, each patient's experiences can differ.

    When engaging medical professionals and determining which of them you will remain a patient with, my suggerstion to you is to consider the documented experience of each medical professional.  In general, just like a car mechanic or plumber, the greater the experience in the profession, the greater the probability of a good outcome.  Do not be hesitant to ask straightforward questions of your medical professionals, regarding their experience (number of procedures performed, etc.) and succesful patient outcomes.  I would also suggest that you engage a medical Oncologist, in addition to surgeons and radiation Oncologists, as they generally do not have a pre-existing preference for either surgery or radiation treatment options.  Further, you can maintain a long-term engagement with the medical Oncologist along your PCa journey, if multiple treatment therapies are required along the journey.

    I can offer you a look at my PCa journey and experiences at this URL, and just scroll down to my January 17, 2020 update.  https://csn.cancer.org/node/299431

    I've had most of the side effects that you can imagine from each of my PCa treatments, and there are links in the referenced URL that describe my personal experiences with those treatments, if you want to peruse them.

    Last, and most important, I still have PCa, but I can assure you that I still maintain a normal fulfilling daily existence, and I still maintain a high quality of life.

    I wish you the best of outcomes on your PCa journey.  

    Hello Joseph

    Hello Joseph

    Thank You for your response, i Believe it’s starting to settle in and accepting the results, as I find myself sharing my PC  diagnosis With a few more people In my life. The hardest part was telling my children  

    Iam trying to be a Sponge absorbing as much knowledge as I can.

    With surgery is there radiation that’s required after surgery?

  • Flyer83948
    Flyer83948 Member Posts: 34
    edited March 2020 #11
    Dennis C said:

    Hello Joseph

    Hello Joseph

    Thank You for your response, i Believe it’s starting to settle in and accepting the results, as I find myself sharing my PC  diagnosis With a few more people In my life. The hardest part was telling my children  

    Iam trying to be a Sponge absorbing as much knowledge as I can.

    With surgery is there radiation that’s required after surgery?

    I was diagnosed with PC last

    I was diagnosed with PC last year. Gleason 6 (3+3) upgraded to Gleason 7 (3+4) after prostate surgery. I took awhile to decide on a course of treatment since prostate cancer tends to be slow growing in comparison to other cancers. Yes, the word "cancer" is viewed as a very scary word, so when I talked to others about my condition I told them that I had cancer with a "small c", not a "big C". It may help to think of your Gleason 7 situation as cancer with a "small c" rather than a "big C", too. It's not going to kill you overnight and you'll probably have many, many years of good health even if you were to do nothing, but it is something that you need to deal with together with your doctor in determining a course of action.

    Finally, remember that prostate cancer is very common among men and is almost inevitable if a man lives long enough. I think that I've read that about 70% of men at the age of 70 have some amount of prostate cancer, but that since it tends to be so slow growing they most often die of something else first. 

     P.S.: In answer to your question about surgery and then radiation, it all depends. I think that surgery alone is usually sufficient, but sometimes follow-up radiation treatment may be needed if post-surgery PSA blood tests indicate that there is still some prostate cancer that wasn't removed by surgery. In your case of Gleason 7, from my understanding it's more likely than not that surgery alone would be sufficient. 

  • lighterwood67
    lighterwood67 Member Posts: 374 Member
    edited March 2020 #12
    All of the Above

    Do your homework; research the options; ask folks who have been through this; come up with a treatment plan that suits you; keep quality of life issues in front of you.  When it comes to surgery, in my case, they did a bladder neck reconstruction; removed the prostate; seminal vesicles; removed 8 pelvic lymph nodes; and of course by doing this the urethra will shorten to a certain extent.  These items are not going to grow back.  This is a surgical change to your body.  As of now, my PSA is undetectable;  fully continent; intimate with my wife.  I may have dealt this cancer a knock out blow.  My surgery was in March of 2108.  At this time, no one has recommended to me to have any follow-up radiation treatment.  You are 12 years younger than me.  Personally, I think you have to figure age into the equation.  Remember this is your decision.  Good luck on your jouney.

  • Gforce
    Gforce Member Posts: 21 Member
    edited March 2020 #13
    I was diagnossed at 53, 3+4

    I was diagnossed at 53, 3+4 tumor 2 cores, 3+3 10 cores. Stage 2 Unfavorable but contained. I am on my 37th Proton treatment at UF Proton in Jacksonville. I had the Spaceoar gel inserted to protect the rectom. I feel great. I chose not to do surgery as my nerve bundles were for sure going. You have choices. 

  • Dennis C
    Dennis C Member Posts: 8
    edited March 2020 #14

    All of the Above

    Do your homework; research the options; ask folks who have been through this; come up with a treatment plan that suits you; keep quality of life issues in front of you.  When it comes to surgery, in my case, they did a bladder neck reconstruction; removed the prostate; seminal vesicles; removed 8 pelvic lymph nodes; and of course by doing this the urethra will shorten to a certain extent.  These items are not going to grow back.  This is a surgical change to your body.  As of now, my PSA is undetectable;  fully continent; intimate with my wife.  I may have dealt this cancer a knock out blow.  My surgery was in March of 2108.  At this time, no one has recommended to me to have any follow-up radiation treatment.  You are 12 years younger than me.  Personally, I think you have to figure age into the equation.  Remember this is your decision.  Good luck on your jouney.

    Thank You for your insight.

    Thank You for your insight. Loved to read you May have given this cancer a Knock Out Blow!!! 

     

  • Dennis C
    Dennis C Member Posts: 8
    edited March 2020 #15
    Gforce said:

    I was diagnossed at 53, 3+4

    I was diagnossed at 53, 3+4 tumor 2 cores, 3+3 10 cores. Stage 2 Unfavorable but contained. I am on my 37th Proton treatment at UF Proton in Jacksonville. I had the Spaceoar gel inserted to protect the rectom. I feel great. I chose not to do surgery as my nerve bundles were for sure going. You have choices. 

    Thank You for sharing your

    Thank You for sharing your experience. 

    I truly appreciate it