Hope??

My husband is diagnosed with prostate cancer. His PSA was 87 and size of prostate was 130. His bone scan was clear and at present no organ. Doctor thinks it is in lymph nodes because of size and PSA.frozen dissection today. Won't do surgery if any in lymph node. Said he would have to throw everything at it and it is a huge mountain to climb. Gleason was 7 and 8. sounds so bleak. My husband is 64 walks 5-6 miles a day. Some urine urges and a little ED otherwise seems healthy good appetite and sleeps well. Is this hopeless.

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Comments

  • VascodaGama
    VascodaGama Member Posts: 3,501 Member
    edited September 2016 #2
    Huge mountain to climb

    Sadie,

    Welcome to the board. I think you are upset with the diagnosis and anxious with the comments from the doctor. It may be an huge mountain to climb but this is not the end of the world. There are several types of treatments for prostate cancer (PCa) administered with intent at cure or to control it. There is hope and you should trust it. Your man will do good.

    The size of the prostate (130 cc) is huge. This may turn surgery unpractical if done with robots/laparoscopy but the open modality can be done; however, the type of intervention dependent on the patient's status and the clinical stage, which results are imperative to decide on an option.

    You commented above on "frozen dissection today". What does it mean? His your husband undertaking cryosurgery?

    The urine urge issues and ED could be due to the size of the gland. It may be pressing up the bladder muscles (urgency) and constricting the seminal vesicles (passage and ejaculation control of semen). The PSA also would be larger than the level of a normal 25 cc gland. Another fact is that the big prostate may have such size due to benign hyperplasia, typical of man of all ages, which elevates the PSA naturally.

    The Gleason 7 (3+4) and 8 (4+4) means they have found cells with grade 4, therefore with a more aggressive behaviour. These tend to spread faster but can be treated. In any case, I wonder why the doctor commented about lymph nodes involvement. Has your husband done any image study apart from the bone scan? Is there any MRI?

    Can you reproduce here the contents of the biopsy's pathologist report? How many positive cores have they found?

    I would recommend you to read about the disease and the treatments. Make a list of questions to expose in your next consultation and take notes or tape the conversations. Do not decide on any thing without understanding fully the contents. Getting second opinions is common in cancer cases.

    Here are some links I believe being helpful to you;

    About PCa:

    http://www.ccjm.org/index.php?id=105745&tx_ttnews%5Btt_news%5D=365457&cHash=b0ba623513502d3944c80bc1935e0958

    About a List of Questions: http://csn.cancer.org/node/224280

    http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

    About nutrition:

    http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

    Best wishes and luck in his/yours journey.

    VGama  

  • VascodaGama
    VascodaGama Member Posts: 3,501 Member
    edited September 2016 #3
    Please find my comments in

    Please find my comments in your CSN E-mail box

    VG

  • Sadie marie
    Sadie marie Member Posts: 63
    edited September 2016 #4
    Hope??

    frozen is to check regional lymph nodes if clean he will take out prostate if not he will close and go a different directio. He is doubtful they will be clean because of size and PSA. Cat scan showed nothing but again thinks size and PSA means lymph nodes not good. He said Doctor who did biopsy got cancer with every probe and if we didn't do anything my husband doesn't last 5 years.

  • Sadie marie
    Sadie marie Member Posts: 63

    Hope??

    frozen is to check regional lymph nodes if clean he will take out prostate if not he will close and go a different directio. He is doubtful they will be clean because of size and PSA. Cat scan showed nothing but again thinks size and PSA means lymph nodes not good. He said Doctor who did biopsy got cancer with every probe and if we didn't do anything my husband doesn't last 5 years.

    Hope??

    i am very scared

  • Old Salt
    Old Salt Member Posts: 910 Member
    edited September 2016 #6
    There's hope!

    Many of us have been faced with similar or worse scenarios. And thanks to modern medicine, we are still around and able to hit a keyboard.

    There are several approaches to tackle a situation such as your husband's.

    It appears that your team has choosen surgery to start the fight with the option not to remove the prostate in case the lymph nodes are cancerous. In the latter case, it would be best to consult with a radiation oncologist who specializes in prostate cancer. Most urologists/surgeons are not well informed about current radiation therapies. Considering your husband's high PSA, it appears likely that hormone therapy will be in his future to kill cancerous cells that might have escaped the prostate.

  • Sadie marie
    Sadie marie Member Posts: 63
    Old Salt said:

    There's hope!

    Many of us have been faced with similar or worse scenarios. And thanks to modern medicine, we are still around and able to hit a keyboard.

    There are several approaches to tackle a situation such as your husband's.

    It appears that your team has choosen surgery to start the fight with the option not to remove the prostate in case the lymph nodes are cancerous. In the latter case, it would be best to consult with a radiation oncologist who specializes in prostate cancer. Most urologists/surgeons are not well informed about current radiation therapies. Considering your husband's high PSA, it appears likely that hormone therapy will be in his future to kill cancerous cells that might have escaped the prostate.

    Hope??

    they have got bad news cancer in lymph nodes. Doctor going to start lupron tomorrow he is not hopeful at all of even 5 years. How do I tell my husband.

  • VascodaGama
    VascodaGama Member Posts: 3,501 Member
    Do not believe in such time frame. That is false.

    Sadie,

    Where from are you posting? We just crisscrossed posts. This is 9am in my place. Are you in Europe?

    I sincerely think your doctor being sarcastic with that comment about the life time set. It is not true at all. It seems that you took his comment wrongly or he is selling you a quick fix. Please read my above comments.

    The lymph nodes positive response indicates that surgery may not be the best choice. You should get second opinions from a radiologist and start anything from there. The Lupron makes part of a hormonal treatment and it is good. It wouldn't interfere with a radiation approach. In fact it will help RT by sensitizing the cancerous cells for better absorption of the radiation (a better way to kill the bandit).

    Be confident and tell the truth to your husband. Both of you should be strong and confront the case with positive thinking.

    Best,

    VG 

  • Sadie marie
    Sadie marie Member Posts: 63

    Do not believe in such time frame. That is false.

    Sadie,

    Where from are you posting? We just crisscrossed posts. This is 9am in my place. Are you in Europe?

    I sincerely think your doctor being sarcastic with that comment about the life time set. It is not true at all. It seems that you took his comment wrongly or he is selling you a quick fix. Please read my above comments.

    The lymph nodes positive response indicates that surgery may not be the best choice. You should get second opinions from a radiologist and start anything from there. The Lupron makes part of a hormonal treatment and it is good. It wouldn't interfere with a radiation approach. In fact it will help RT by sensitizing the cancerous cells for better absorption of the radiation (a better way to kill the bandit).

    Be confident and tell the truth to your husband. Both of you should be strong and confront the case with positive thinking.

    Best,

    VG 

    Hopeless??

    i live in Illinoi. I was up thinking and thought I would post what happened yesterday. I am trying to process. 

  • Will Doran
    Will Doran Member Posts: 207
    Hope? Yes.

    Sadie,

    Yes, there is hope.  Don't give up.  I was diagnosed in August 2013 with a PSA of 69, and a Gleason of 7 (3+4).  Had surgery in December 2013, followed by two years of Lupron and 8 weeks of radiation to "clean up" any cancer that might have been missed in the surgery.  Post surgery, I learned that I had one very small spot in one lymph node.  I am now three years past diagnosis and my PSA continues to remain at Undetectable.  I've been off the Lupron for 9 months and my Testosterone has come back up from it's lowest point of 17 (250 - 1,100 is normal range) to 320, as per my last blood work 3 weeks ago.  At first, It looked pretty grim for me.  However at this point my doctors are talking 10+ years from now, and we are talking about what treatments we might look at if my PSA comes up to the point that it needs treated again. 

    You said:  How do I tell my husband.   I  would think the doctors should tell your husband, and explain all of his situation.  Just my thoughts.  When I was diagnosed the doctors talked to me and my wife together.  My wife has been my biggest support.  The doctors (Urologist, Chemo Oncologist and Radiation Oncologist) all talked to both of us.  Make sure and be your husband's biggest and strongest form of support.  It's a tough fight, But, as it says on the "wrist bands" my wife wears all the time--- "Nobody Fights Alone".  Make sure and talk to all doctors, Urologist, Radiation and Chemo Oncologists, and learn all the options. 

    You stated that your husband walks 5 - 6 miles per day. Thats' great.  I was a road cyclist and was on the road two to three hours per day.  My doctors say my physical condition has been my biggest help in this battle. I still do 100 + mintes per day on my indoor spinner bike , my physical therapy and my free weights every day.  I turned 70 in July 2016.  Your husband is younger than I was when diagnosed.  So, Yes, there is hope. 

    I'm not a doctor, but I sure know how you and your husband feel.  So, hang in there and fight like the devil.

    Know that your are both in my thoughts and Prayers.

    Love, Peace and God Bless

    Will

  • Sadie marie
    Sadie marie Member Posts: 63

    Hope? Yes.

    Sadie,

    Yes, there is hope.  Don't give up.  I was diagnosed in August 2013 with a PSA of 69, and a Gleason of 7 (3+4).  Had surgery in December 2013, followed by two years of Lupron and 8 weeks of radiation to "clean up" any cancer that might have been missed in the surgery.  Post surgery, I learned that I had one very small spot in one lymph node.  I am now three years past diagnosis and my PSA continues to remain at Undetectable.  I've been off the Lupron for 9 months and my Testosterone has come back up from it's lowest point of 17 (250 - 1,100 is normal range) to 320, as per my last blood work 3 weeks ago.  At first, It looked pretty grim for me.  However at this point my doctors are talking 10+ years from now, and we are talking about what treatments we might look at if my PSA comes up to the point that it needs treated again. 

    You said:  How do I tell my husband.   I  would think the doctors should tell your husband, and explain all of his situation.  Just my thoughts.  When I was diagnosed the doctors talked to me and my wife together.  My wife has been my biggest support.  The doctors (Urologist, Chemo Oncologist and Radiation Oncologist) all talked to both of us.  Make sure and be your husband's biggest and strongest form of support.  It's a tough fight, But, as it says on the "wrist bands" my wife wears all the time--- "Nobody Fights Alone".  Make sure and talk to all doctors, Urologist, Radiation and Chemo Oncologists, and learn all the options. 

    You stated that your husband walks 5 - 6 miles per day. Thats' great.  I was a road cyclist and was on the road two to three hours per day.  My doctors say my physical condition has been my biggest help in this battle. I still do 100 + mintes per day on my indoor spinner bike , my physical therapy and my free weights every day.  I turned 70 in July 2016.  Your husband is younger than I was when diagnosed.  So, Yes, there is hope. 

    I'm not a doctor, but I sure know how you and your husband feel.  So, hang in there and fight like the devil.

    Know that your are both in my thoughts and Prayers.

    Love, Peace and God Bless

    Will

    Hopeless??

    thank you. They could not do surgery it was in lymph nodes. He started lupron today and they are checking if he can get in a clinical trial to see if he can do xtandi at same time. 

  • Sadie marie
    Sadie marie Member Posts: 63
    edited September 2016 #12
    Hope??

    how reliable are bone scans? the bone scan was clear but doctor says since cat scan didnt show lymph node involvement the bone scan could be false too. there was one bright spot on hip but they had him come in and xrayed and said it was nothing. there is no bone pain.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,729 Member

    Hope??

    how reliable are bone scans? the bone scan was clear but doctor says since cat scan didnt show lymph node involvement the bone scan could be false too. there was one bright spot on hip but they had him come in and xrayed and said it was nothing. there is no bone pain.

    Patience and Hope

    The healthiest attitude to have right now is patience, combined with hope.

    Let the specifics trickle in. You are learning more every day.  Bone scans generally have high resolution and accuracy.  Prostate tumors in the bone do not usually cause pain until the tumors are significant in size, so no pain, while a good thing, is no form of proof against nascent tumors being present there. (I have had friends with heavy bone metastasis who did not have bone pain.)

    max

    .

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,729 Member

    Hopeless??

    thank you. They could not do surgery it was in lymph nodes. He started lupron today and they are checking if he can get in a clinical trial to see if he can do xtandi at same time. 

    Hope

    Sadie,

    It is probably a good thing the doctors biopsied the nodes prior to the prostectomy, since removing the gland would have been for no reason, and no doubt would have weakened him a lot.  Unless his particualrs change a LOT, a prostectomy for him would with virtual certainty be a bad thing.

    Hormonal therapy, most likely combined with radiation, can very likely give him a lot of years, even good years, in which he may feel relatively normal. Guessing his lifespan at this early point was irresponsible on the part of his doctors.  Same with us here at the Board:  we can only relate what we have experienced or (like me) seen transpire in friends and loved ones.

    max

    .

  • Old Salt
    Old Salt Member Posts: 910 Member
    edited September 2016 #15
    Please specify what kind of bone scan

    Your question can't really be answered with 100% certainty. False positives and negatives do occur. The test equipment and the skill of the specialist reading the image play a major role. In the latter context, I believe that the most sensitive bone scan is done with (19F)Sodium fluoride. Is that the scan that was used for your husband?

    More in general, let the medical process play out step by step and in a logical way. In other words, let's base the therapeutic approach on the data that are available, not on some perceived problem that may not exist.

    PS: Max said something similar in the above post, but in a nicer way.

  • Sadie marie
    Sadie marie Member Posts: 63
    edited September 2016 #16
    Old Salt said:

    Please specify what kind of bone scan

    Your question can't really be answered with 100% certainty. False positives and negatives do occur. The test equipment and the skill of the specialist reading the image play a major role. In the latter context, I believe that the most sensitive bone scan is done with (19F)Sodium fluoride. Is that the scan that was used for your husband?

    More in general, let the medical process play out step by step and in a logical way. In other words, let's base the therapeutic approach on the data that are available, not on some perceived problem that may not exist.

    PS: Max said something similar in the above post, but in a nicer way.

    hope??

    agree just going by doctors lead not sure what kind of bone scan, do you know how long it takes micrometastic to become metastic or is there a difference.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    cat scan

    Sadie,

    A cat scan does not provide the resolutions that a 3T multiparametric MRI does. The MRI is more likely to indicate if the cancer has escaped the prostate, if the cancer is one lobe or two, and the amount of suspicious lesions. ...I strongly recommend that you ask for an MRI......................additionally there are PET Scans.....that are worth investigation to find the best one that is available to you.

    It is important for your man to see a Medical Oncologist. This professional is the most quailified to administer hormone treatment, and manage his case.

    Best

     

  • VascodaGama
    VascodaGama Member Posts: 3,501 Member
    CT results in your hands

    I like to read your queries. It signals that you have been absorbing information and researching its meaning. This is the best you can do at the moment. How about your husband, his he aware of our discussions?

    Your last post comments about the CT results (cat scan didnt show lymph node involvement), and with that piece of info I now believe that the doctor looking upon the case is reliable. The typical doctor would rely on the collected data (biopsy, image studies and symptoms) and would proceed forward with a clinical staging. In other words, your doctor did a step further and decided to get a real sample of the close lymph nodes to judge and compare with the negative results of the CT and Bone scan. He is aware of the limitations of those exams. Bone scan is quite reliable but CT only detects tumours larger than 1.2 cm (1.5 cm on average depending on the depth where the tumour is located). 3T MRI would have provide a better image study. In any case, the diagnosis is now more reliable and it made the doctor to reject surgery as appropriate to this case.

    The above data may be a relief for you as it indicates that the metastases may not be at far places. You can now forget about that negative feeling of last week. There is hope and you can see it now.

    I wonder why you're inquiring about the micrometastatic cancer. Has the doctor commented on such issue?

    To answer your question on the matter, the difference is related to the way that the cancer multiplies. Micrometastases are sort of cancerous cells spread in small colonies in a vast area wherever a tumour is sort of a concentration of cancerous cells gather together growing and forming a big tumour. Accordingly, micrometastases are hard to be detected by the traditional scans due to its size. These type of cancer is best detected with radio-tracers used in PET scans. The one showing the best results in terms of detection reliability is the 68 Ga PSMA PET exam. We have discussed the exam here in several threads. Please read the comments in this link;

    https://csn.cancer.org/comment/1553746#comment-1553746

    I (and some survivors here) still recommend you to get second opinions from other specialists. You can follow this doctors lead (your words)but an urologist may not be proper if the case relates to radiotherapy and hormonal manipulations.

    Best wishes,

    VGama

  • Sadie marie
    Sadie marie Member Posts: 63

    CT results in your hands

    I like to read your queries. It signals that you have been absorbing information and researching its meaning. This is the best you can do at the moment. How about your husband, his he aware of our discussions?

    Your last post comments about the CT results (cat scan didnt show lymph node involvement), and with that piece of info I now believe that the doctor looking upon the case is reliable. The typical doctor would rely on the collected data (biopsy, image studies and symptoms) and would proceed forward with a clinical staging. In other words, your doctor did a step further and decided to get a real sample of the close lymph nodes to judge and compare with the negative results of the CT and Bone scan. He is aware of the limitations of those exams. Bone scan is quite reliable but CT only detects tumours larger than 1.2 cm (1.5 cm on average depending on the depth where the tumour is located). 3T MRI would have provide a better image study. In any case, the diagnosis is now more reliable and it made the doctor to reject surgery as appropriate to this case.

    The above data may be a relief for you as it indicates that the metastases may not be at far places. You can now forget about that negative feeling of last week. There is hope and you can see it now.

    I wonder why you're inquiring about the micrometastatic cancer. Has the doctor commented on such issue?

    To answer your question on the matter, the difference is related to the way that the cancer multiplies. Micrometastases are sort of cancerous cells spread in small colonies in a vast area wherever a tumour is sort of a concentration of cancerous cells gather together growing and forming a big tumour. Accordingly, micrometastases are hard to be detected by the traditional scans due to its size. These type of cancer is best detected with radio-tracers used in PET scans. The one showing the best results in terms of detection reliability is the 68 Ga PSMA PET exam. We have discussed the exam here in several threads. Please read the comments in this link;

    https://csn.cancer.org/comment/1553746#comment-1553746

    I (and some survivors here) still recommend you to get second opinions from other specialists. You can follow this doctors lead (your words)but an urologist may not be proper if the case relates to radiotherapy and hormonal manipulations.

    Best wishes,

    VGama

    Hope??oo

    the reason I asked that question is the doctor said since scan didn't show lymph node it may have spread with micro metastatic so I have gone from being glad it wasn't in bones or distant places to worried it's there to

  • VascodaGama
    VascodaGama Member Posts: 3,501 Member
    Hope??oo=Veryhopeful

    PCa does not spread and create colonies that easy. Out of the gland at the new living quarters the environment is hostile for foreign cells to survive. They have to compete with the locals for blood supply or it must have the ability to create newer blood vessels. Usually metastases are found where blood supply is ready available, such as the lymph nodes (the filters of the circulatory system) and organs. Bone is usually the last place where to set. Of course, there are exceptions but are rare and that never happens to us.

    In any case, you can try localizing those colonies (tumors) with a 68Ga PSMA PET scan (not so sure if they do it under Luprons effects). Your husband could inquire his doctor on possibilities of participating in a running clinical trial for this exam. You can also inquire directly contacting the person in charge. Please read the story of this survivor that has done the test sucessfuly;

    https://csn.cancer.org/node/303009

    https://csn.cancer.org/node/304131

     

     

     

  • Sadie marie
    Sadie marie Member Posts: 63
    edited September 2016 #21
    Hope??

    they are checking if he can do a trial that is giving xtandi at the same time as lurpron said there was good results have you heard of this trial