Any wives/significant others out there wanna chat?

mrshisname
mrshisname Member Posts: 186
edited March 2014 in Prostate Cancer #1
I have been reading LOTS and I guess this disease is frustrating for me since I am a nurse. In most disease states, even most diagnoses of cancer, it appears the treatment is pretty clear cut. With this one though, it is such a hard decision. My husband (age 51, Gleason of 3+3)is happy with his choice (DaVinci surgery), I am having a little difficulty. The more I read the more confused I become. The book I'm reading now is written by a urologist and it is called "The Big Scare", and this doc's opinions seem valid. You see, he is a urologist who has practiced many years, and most of those years were in the VA system, where the number of procedures he did had NO IMPACT on his salary. It makes him a pretty believable source for me. It seems every specialist we've seen all say Jesse is perfect for their specialty. I don't trust any of them! Anyone else out there feel like this?
I also read of the proclivity of prostate cancer for bone marrow, and that sometimes, at the very time prostate cancer is first detectable there are already cells in the bone marrow. And, that prostate cancer is not very sensitive to radiation. However once it goes to the bones it is. It makes me wonder if hormone treatment might be worth it to start out with in someone who is low risk. I don't know, guess just having a down day for some reason, and wondering what other wives/s.o.'s are thinking and how they are dealing with all this uncertainty?

Comments

  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    #2
    Maria
    I find value in your post in that it does seem to be a grey area this prostate thing....I hope you can ask Dr. Scott what he thinks about the possibility that perhaps this is all over diagnosed and maybe more tests...like what Ira had to determine the strength and extent of the cancer is in order prior to ever even making a decision on what treatment. It could be that all these Dr.'s and surgeons and oncologists are just marching forward with treatment that perhaps could be unnecessary...yet again there are 29,000 people - men that die each year from this....I believe very much that same for breast cancer...so how is it that there is even more fuss about breast cancer than prostate...much to ponder

    Randy
  • mrshisname
    mrshisname Member Posts: 186
    #3
    randy_in_indy said:

    Maria
    I find value in your post in that it does seem to be a grey area this prostate thing....I hope you can ask Dr. Scott what he thinks about the possibility that perhaps this is all over diagnosed and maybe more tests...like what Ira had to determine the strength and extent of the cancer is in order prior to ever even making a decision on what treatment. It could be that all these Dr.'s and surgeons and oncologists are just marching forward with treatment that perhaps could be unnecessary...yet again there are 29,000 people - men that die each year from this....I believe very much that same for breast cancer...so how is it that there is even more fuss about breast cancer than prostate...much to ponder

    Randy

    Randy
    Yeh, I just really wonder in Jesse's case. No nodule, only 5% of ONE specimen positive, and one other specimen 'suspicious'. However, as you well know, the 'proof is in the pudding', with the path from the surgery. I guess I'm just getting cold feet? He has no idea I'm feeling this way today. And no matter how many stats you read, that so much % of the cancers discovered are not aggressive, there is always the WHAT IF you are the ONE that is? I HATE THIS DISEASE!
  • bdhilton
    bdhilton Member Posts: 866 Member
    #4
    My 2 cents
    I truly hope the best for your husband and I know exactly what you are saying with all of this information being shoved at you and how everyone has the best treatment for your husband.
    Please do not take this the wrong way….At the end of the day your husband has to make this decision on what is best for him. It is his life and he needs to make that decision and the responsibility of that decision.. .
    Based on his age and what you have posted on his grading I personally would go with surgery or active surveillance (with a reputable University)…but that is me…I am 55 and if you read my post I was a little late to my party (not to say I missed it but for sure late)
    If need be mediate and seek some spiritual guidance in the decision making process and move on…Life is short
  • mrshisname
    mrshisname Member Posts: 186
    #5
    bdhilton said:

    My 2 cents
    I truly hope the best for your husband and I know exactly what you are saying with all of this information being shoved at you and how everyone has the best treatment for your husband.
    Please do not take this the wrong way….At the end of the day your husband has to make this decision on what is best for him. It is his life and he needs to make that decision and the responsibility of that decision.. .
    Based on his age and what you have posted on his grading I personally would go with surgery or active surveillance (with a reputable University)…but that is me…I am 55 and if you read my post I was a little late to my party (not to say I missed it but for sure late)
    If need be mediate and seek some spiritual guidance in the decision making process and move on…Life is short

    yes i know
    I do truly realize it is his decision and I guess that is why I'm venting on this board. I support him 100% in his decision, I just don't want him to have regrets about the path he chooses. Just feeling sad about the whole thing. Thanks for reminding me WHO is in charge here, I need to go hit my knees before off to bed, and talk to the Great Physician! You are so right, life is short...
  • lewvino
    lewvino Member Posts: 1,010
    #6
    I'm sure my wife would be
    I'm sure my wife would be glad to chat with you if you want. She is an RN in labor and delivery. This week is not a good week for her to chat though. We are out in Las Vegas. She is attending a class on First Assit. Some of the Doc at the hospital she works at have agreeded to 'sponsor' her so she is in class all day, studying in the evenings and trying to save some spare time for a little fun while we are out here. For those not medical I believe the First Assist will allow her to perform closing sutures for Doctors after surgery. She is scrub in Labor and Delivery and has also worked surgery before.

    She trusted my research, listened to me, prayed with and for me and said she would support me in what ever decision I made when I did my research. Just let us know if you would like to chat some time next week or later.

    Larry
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    #7
    mrshisname said:

    yes i know
    I do truly realize it is his decision and I guess that is why I'm venting on this board. I support him 100% in his decision, I just don't want him to have regrets about the path he chooses. Just feeling sad about the whole thing. Thanks for reminding me WHO is in charge here, I need to go hit my knees before off to bed, and talk to the Great Physician! You are so right, life is short...

    Well
    You will chat with my RN on Wed afternoon after your appointment. Annette will be there with me. Hey What is up with that...all these spouses that are RN's and we have cancer....LOL A little male chauvinistic humor there.

    Seriously, I feel we have been blessed to have that fortune of incredible compassion from our loving partners! Mine litterally probably saved my life!

    Randy
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #8
    Hormone therapy
    "However once it goes to the bones it is. It makes me wonder if hormone treatment might be worth it to start out with in someone who is low risk"

    There is a new drug, Avodart, that a medical study showed to be beneficial for those who have not been diagnosed with prostate cancer.....there are some side effects from the drug.

    As I understand the drug is being tested for those with low level of prostate cancer.

    There are medical oncologists who specialize in prostate cancer who are treating with this drug....I spoke to my doc about this drug , and he being conservative would not prescribe because as he said, it was only for high risk patients who do not have the disease.

    IN a support group that I attended last year, a man told us that he had been taking hormones for the last 7 years, after he was diagnosed.....if I remember, his cancer was more progressed....that is the only treatment option that he chose.

    It's your decision, but it is very possible that the cancer will not progress , and if it does, in the future there may in fact be new better treatment options.

    Ira
  • erisian
    erisian Member Posts: 107
    #9
    hopeful and optimistic said:

    Hormone therapy
    "However once it goes to the bones it is. It makes me wonder if hormone treatment might be worth it to start out with in someone who is low risk"

    There is a new drug, Avodart, that a medical study showed to be beneficial for those who have not been diagnosed with prostate cancer.....there are some side effects from the drug.

    As I understand the drug is being tested for those with low level of prostate cancer.

    There are medical oncologists who specialize in prostate cancer who are treating with this drug....I spoke to my doc about this drug , and he being conservative would not prescribe because as he said, it was only for high risk patients who do not have the disease.

    IN a support group that I attended last year, a man told us that he had been taking hormones for the last 7 years, after he was diagnosed.....if I remember, his cancer was more progressed....that is the only treatment option that he chose.

    It's your decision, but it is very possible that the cancer will not progress , and if it does, in the future there may in fact be new better treatment options.

    Ira

    Overdiagnosed?
    That's the new question. I found it last month:
    http://dartmed.dartmouth.edu/winter09/html/disc_overdiagnosed.php

    I know you said that your husband was on the "just get it out" path, but a life-altering decision should not be rushed into without having checked all the available info. You are so right that each specialist will recommend their specialty, so even advice from doctors must be taken with a grain of salt sometimes. Active Surveillance can be a good path for low-grade cancers, and has the distinct advantage that if that is what you are doing, then you can change your mind at any time and go with a more aggressive treatment. Also, there are a couple of guys in my local support group who had brachytherapy (radioactive "seed" implants) for early-stage PCa who are very happy, completely clear of cancer after a number of years, and they still have full sexual function, which is something that no other treatment offers. Does hubby fully understand what he *will* lose, and what he might lose, through surgery?
  • mrshisname
    mrshisname Member Posts: 186
    #10
    erisian said:

    Overdiagnosed?
    That's the new question. I found it last month:
    http://dartmed.dartmouth.edu/winter09/html/disc_overdiagnosed.php

    I know you said that your husband was on the "just get it out" path, but a life-altering decision should not be rushed into without having checked all the available info. You are so right that each specialist will recommend their specialty, so even advice from doctors must be taken with a grain of salt sometimes. Active Surveillance can be a good path for low-grade cancers, and has the distinct advantage that if that is what you are doing, then you can change your mind at any time and go with a more aggressive treatment. Also, there are a couple of guys in my local support group who had brachytherapy (radioactive "seed" implants) for early-stage PCa who are very happy, completely clear of cancer after a number of years, and they still have full sexual function, which is something that no other treatment offers. Does hubby fully understand what he *will* lose, and what he might lose, through surgery?

    Erisian
    I know I sound like a broken record, but hubby wants NOTHING to do with radiation or radioactive seeds. We did see the radiation oncologist. Hubby said as soon as he walked out the door after the appointment "NO WAY NO HOW IS ANYONE PUTTING ANY RADIATION IN ME". He has been around industrial settings all his working life and does not want any more exposure than he already has had.
    Hubby DOES fully understand what he may lose, has talked to probably 8 - 10 men now who have had the robotic surgery, so he is very well aware.
    I'd be in favor of active surveillance for a bit, with hormone therapy. He does not want to do that at all, wants it out asap. We see surgeon #3 tomorrow, then meet up with Randy for dinner.
    It just still makes me sad that the choices are so confusing and so rotten.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #11
    mrshisname said:

    Erisian
    I know I sound like a broken record, but hubby wants NOTHING to do with radiation or radioactive seeds. We did see the radiation oncologist. Hubby said as soon as he walked out the door after the appointment "NO WAY NO HOW IS ANYONE PUTTING ANY RADIATION IN ME". He has been around industrial settings all his working life and does not want any more exposure than he already has had.
    Hubby DOES fully understand what he may lose, has talked to probably 8 - 10 men now who have had the robotic surgery, so he is very well aware.
    I'd be in favor of active surveillance for a bit, with hormone therapy. He does not want to do that at all, wants it out asap. We see surgeon #3 tomorrow, then meet up with Randy for dinner.
    It just still makes me sad that the choices are so confusing and so rotten.

    hi
    "It just still makes me sad that the choices are so confusing and so rotten."

    I agree, there is no good choice......also......as i think about it, us non professionals are making the decisions for what we want, and which may or may not be the best choice....we can very easily find someone who is willing to give any treatment that we fancy.

    For what it's worth, because of the extremely low number that he has , there is an excellent chance of success for whatever treatment that your husband chooses

    Ira
  • sidneytrent
    sidneytrent Member Posts: 5
    #12
    hopeful and optimistic said:

    hi
    "It just still makes me sad that the choices are so confusing and so rotten."

    I agree, there is no good choice......also......as i think about it, us non professionals are making the decisions for what we want, and which may or may not be the best choice....we can very easily find someone who is willing to give any treatment that we fancy.

    For what it's worth, because of the extremely low number that he has , there is an excellent chance of success for whatever treatment that your husband chooses

    Ira

    I agree with Ira..
    I agree with Ira. Your husband's low number and low percentage of prostate involvement gives him choices that other men don't have. If my husband had that scenario (he doesn't) he would have chosen Davinci with a great surgeon who will take the time to do nerve sparing. I wish you luck and success whatever route he chooses. May God bless you and keep you both.

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