Enlarged prostate/positive for cancer

dockbouy
dockbouy Member Posts: 11
Hi, everyone,

My husband (67) has been diagnosed with prostate cancer. We saw a urologist at Vanderbilt in Nashville, who has suggested that with the size of his prostate and a Gleason score of 3+3=6, his 2 options are "active surveillance, or robotic prostate removal. The prostate is so enlarged it is pushing up into the bladder, and the DR. feels that radiation could potentially damage the bladder, creating another problem, and the seed therapy will not work for him. Anyone out there with a similar situation? Surgery is scheduled for April 10th, but we are still exploring other options. Thanks in advance for any support.

yoadrienne

Comments

  • JJPhare
    JJPhare Member Posts: 34
    Explore your options
    Yoadrienne,

    It would be helpful to know the other stats. Your husband appears to have time on his side for now (for Gleason 6) so all of his options need to be explored. I had Gleason 6, T1c, Psa 13, 2/12 cores @10% diagnosis last March (age 62). My prostate was also pushing up behind the bladder. My insurance would only cover brachytherapy, DaVinci robotic surgery or radiation /seeds (40 treatments) none with which I felt comfortable. The surgeon had "only" 250 procedures for experience so I wasnot comfortable with him. Active surveillance was my first choice until I decided what to do. At Gleason 6, I was told by 3 urologists and 3 radio oncologists (RO) that I had time however the psychological aspects might play a greater role than the cancer itself. Also, every DR. preferred his/her own specialty except for one urologist who helped me look at all options including a change in diet. After 4 months of research and prayer, I opted for Cyberknife (CK)receiving a self-pay discount since my Colorado HMO would not cover it. There are several on this site who have had each of the options. I had an MRI and CT scan which showed the unusual location of my bladder. The RO for CK was able to work around it with the VSI robot. You will find a lot of support and guidance for most procedures on this site to assist you in the decision that only you and your husband can make. Best wishes to the two of you.
  • ralph.townsend1
    ralph.townsend1 Member Posts: 359 Member
    This is what I know!
    I had radiation and your Doctor is right. The damage to that area can affect not only the bladder , but the rectal, bowel movements. It's not pretty. The new proton radiation is better than former radiation treatments. Now to the subect of Robotic prostate removal VS getting a second opinion!!!! With a gleason score 3+3=6. Big Question, have you looked into other treatment option's. To lose your prostate is having a part of your life taken away. ED is not pretty. Before you do the Robotic, which is less invasive, realize the Doctor can not have "hands on" and see everything like margins, and thats a fact Jack!

    The Book, by DR Patrick Walsh, "Surviving Prostate Cancer" is a great resource.

    Most importantly, GET A SECOND OPINION!!!
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Active Surveilance for delayed treatment
    As a man who has been on active surveillance for the last three years, I believe that if possible this is the best treatment option that is available, depending on a persons stats, since 70 percent of these cancers are indolent, meaning not likely to spread, and generally if monitored, a person can have the same active treatment later on as a person would initially choose.

    There are guidelines that are optimal for a person to in an active surveillance program.

    Please get back to us with answers to specifics

    How many cores were taken

    How many were positive

    What was the percent involvement and gleason of each core positive

    What is the size of the prostate

    What is the PSA,

    What is the history of the PSA; what are the data points

    What did the digital rectal exam show

    Note: Did you have a second opinion from an independent pathologist on the pathology.
  • Kongo
    Kongo Member Posts: 1,166 Member
    Good Grief
    Sorry you are here but please,lease, please get a second opinion. Let me guess, your urologist is a surgeon, right? And he told you the prostate is too big for radiation? This is nonsense. Most of your husbands PSA which likely launched the investigation in the fiest place is likely caused by BPH. had it not been for the PSA you probably never would have had a biopsy or a cancer diagnosis and he wants to remove his prostate? Do both of you understand what the potential side effect here are?

    Did your urologist ever talk about reducing the size of the prostate instead of cutting it out, either with drugs or a TURP?

    I would discuss your options with a radiologist and oncologist that specializes in prostate cancer before you make any decisions. Also, can you please shae more df your history here as in PSA history, physical symptoms, biopsy results, general health, etc.

    Good luck to you.

    k
  • dockbouy
    dockbouy Member Posts: 11

    Active Surveilance for delayed treatment
    As a man who has been on active surveillance for the last three years, I believe that if possible this is the best treatment option that is available, depending on a persons stats, since 70 percent of these cancers are indolent, meaning not likely to spread, and generally if monitored, a person can have the same active treatment later on as a person would initially choose.

    There are guidelines that are optimal for a person to in an active surveillance program.

    Please get back to us with answers to specifics

    How many cores were taken

    How many were positive

    What was the percent involvement and gleason of each core positive

    What is the size of the prostate

    What is the PSA,

    What is the history of the PSA; what are the data points

    What did the digital rectal exam show

    Note: Did you have a second opinion from an independent pathologist on the pathology.

    Enlarged prostate/positive for cancer
    Here is the info regarding my husband's needle biopsy: 1 of 14(7%)cores taken malignant. In the right apex, "F" has GS:6,"L" in right apex atypical. Prostate size is 168cc; PSA 10.45. Last PSA and prior tests were commonly in the 6.2 to 6.4 range. 2 uropathologists reviewed needle biopsy.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    dockbouy said:

    Enlarged prostate/positive for cancer
    Here is the info regarding my husband's needle biopsy: 1 of 14(7%)cores taken malignant. In the right apex, "F" has GS:6,"L" in right apex atypical. Prostate size is 168cc; PSA 10.45. Last PSA and prior tests were commonly in the 6.2 to 6.4 range. 2 uropathologists reviewed needle biopsy.

    OK
    In my layman's opinion, I believe that your husband is an excellent candidate for "Active Surveillance with Delayed Treatment if necessary".

    His gleason is 3+3=6, which is not an aggressive cancer.

    He has less than 3 cores that are positive with no more than .50 involvement.

    Although his PSA is currently high; the relationship to the prostate size is low, less than ,0.15 guideline.

    As of late, his PSA rose significantly probably due to factors other than the prostate cancer.

    Does your husband have trouble urinating, or other physical factors due to the size of the prostate?

    You did not mention the dates of the other PSA's since the rate of increase over time is important to know.

    When you say "2 uropathologists reviewed needle biopsy" is this an outside world qualified independent pathogist or from inside the organization? It is very, very, very important to have an independent second opinion so you are not over or under treated.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member

    OK
    In my layman's opinion, I believe that your husband is an excellent candidate for "Active Surveillance with Delayed Treatment if necessary".

    His gleason is 3+3=6, which is not an aggressive cancer.

    He has less than 3 cores that are positive with no more than .50 involvement.

    Although his PSA is currently high; the relationship to the prostate size is low, less than ,0.15 guideline.

    As of late, his PSA rose significantly probably due to factors other than the prostate cancer.

    Does your husband have trouble urinating, or other physical factors due to the size of the prostate?

    You did not mention the dates of the other PSA's since the rate of increase over time is important to know.

    When you say "2 uropathologists reviewed needle biopsy" is this an outside world qualified independent pathogist or from inside the organization? It is very, very, very important to have an independent second opinion so you are not over or under treated.

    more information
    Just relooked at your post...need to know what percent of the core that is 3+3=6 is cancerous.....this information is found on the biopsy report...(the percent that you gave is based on 1 of 14 cores. It's good that you have only one core that is cancerous, but other information is required.... a different percent.

    Also please answer what the DRE determined?
  • Beau2
    Beau2 Member Posts: 261
    Enlarged Prostate/Cancer
    Yo Adrienne,

    At 160 cc your husband's prostate is very large. I believe the average prostate size is 20 to 30 ccs. Mine was 70 cc and it caused me problems. Like a weak stream that was hard to start and getting up 2 or 3 times at night. Flomax, etc. did not help me.

    When I was diagnosed with PCa I was told that before I could start brachy they would need to reduce the size of the prostate to less than 50 cc, and that they would "try" to do this with hormone therapy. As I recall, I was told that if they were to try and treat my large (70 cc) prostate they would need to administer an unacceptable level of radiation. Therefore, I needed to do a few months of HT before they would administer the seeds.

    I chose surgery. As others have told you surgery can have side effects. For me the side effects have not been bad. I was immediately continenet (no urinary issues) and my ED can be handled with pills. At 65, I find many of my non-PCa friends also on pills.

    A benefit of the surgery has been improved urinary function. I sleep much better because I no longer have a need to get up at night. And, my flow is unbelievable ... like a race horse.

    You have some hard decisons in front of you. Take your time and do your research. If you haven't done so, I would recommend you read Dr. Patrick Walsch's book, "Guide to Surviving Prostate Cancer" and Dr. John Mulhall's book, "Saving Your Sex Life, A Guide for Men With Prostate Cancer". You can also find seminars by Dr. Mulhall on You Tube.

    Hope this helps. Best of luck in your fight against PCa.
  • dockbouy
    dockbouy Member Posts: 11

    more information
    Just relooked at your post...need to know what percent of the core that is 3+3=6 is cancerous.....this information is found on the biopsy report...(the percent that you gave is based on 1 of 14 cores. It's good that you have only one core that is cancerous, but other information is required.... a different percent.

    Also please answer what the DRE determined?

    Enlarged prostate/positive for cancer
    On the report under "Clinical Information", the following information is found:
    DRE: Non-Suspicious
    PROSTATE SIZE: 168CC
    PREVIOUS BIOPSY: Negative (approx. 5 yrs. ago)
    LAST TOTAL PSA: 10.45
    CLINICAL INFO: (790.93)Elevated prostate specific antigen (PSA)

    Also under "Diagnostic Information" is as follows:
    F: Right Apex-FINAL DIAGNOSIS: Small focus of moderately differentiated adenocarcinoma, Gleason Score 3=3=6, measuring 2mm(10% of tissue).

    L: Right Apex Lat-FINAL DIAGNOSIS: Small focus of atypical glands, suspicious
    for adenocarcinoma.

    NOTE: Anti-cytokeratin(CK903)and p63 do not reveal the presence of basal cells. Anto-racemase(P504S)is positive within suspect epithelial cells. These data support the malignant diagnosis.

    As far as the lab results go, the results were confirmed by 2 uropathologists at the same lab, and checked again at Vanderbilt. My husband faxed his biopsy report to the Radiotherapy Clinics of Georgia (where they do the "ProstRcision procedure), in order to get another opinion. However, I believe that we need to be directed to an independent lab where they are not promoting their "wares". Any thoughts or direction on this? We live in TN and are new to the area from MI. Kind of lost...
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    dockbouy said:

    Enlarged prostate/positive for cancer
    On the report under "Clinical Information", the following information is found:
    DRE: Non-Suspicious
    PROSTATE SIZE: 168CC
    PREVIOUS BIOPSY: Negative (approx. 5 yrs. ago)
    LAST TOTAL PSA: 10.45
    CLINICAL INFO: (790.93)Elevated prostate specific antigen (PSA)

    Also under "Diagnostic Information" is as follows:
    F: Right Apex-FINAL DIAGNOSIS: Small focus of moderately differentiated adenocarcinoma, Gleason Score 3=3=6, measuring 2mm(10% of tissue).

    L: Right Apex Lat-FINAL DIAGNOSIS: Small focus of atypical glands, suspicious
    for adenocarcinoma.

    NOTE: Anti-cytokeratin(CK903)and p63 do not reveal the presence of basal cells. Anto-racemase(P504S)is positive within suspect epithelial cells. These data support the malignant diagnosis.

    As far as the lab results go, the results were confirmed by 2 uropathologists at the same lab, and checked again at Vanderbilt. My husband faxed his biopsy report to the Radiotherapy Clinics of Georgia (where they do the "ProstRcision procedure), in order to get another opinion. However, I believe that we need to be directed to an independent lab where they are not promoting their "wares". Any thoughts or direction on this? We live in TN and are new to the area from MI. Kind of lost...

    So there is
    10 percent involvement of the core that is cancerous......so the biopsy shows a low volume, low aggressive cancer.....this is a garden variety cancer, as opposed to an aggressive cancer, and active surveillance is a great choice for him.

    Expert Pathologists:

    David Bostwick(Virginia) 800 214-6628

    Jon Oppenheimer (Tennessee) 888-868-7522

    So now you need to get educated. read, read, and read; attend face to face support groups in your area.

    Also in my opinion, as far as the cancer diagnosis, that I believe is most likely indolent....tell your husband to go on with his life, starting with taking you out for a nice dinner.

    I am not knowable about what he needs to do as far as the enlarged prostate, but obviously you need to research this.

    Best
  • Kongo
    Kongo Member Posts: 1,166 Member
    dockbouy said:

    Enlarged prostate/positive for cancer
    On the report under "Clinical Information", the following information is found:
    DRE: Non-Suspicious
    PROSTATE SIZE: 168CC
    PREVIOUS BIOPSY: Negative (approx. 5 yrs. ago)
    LAST TOTAL PSA: 10.45
    CLINICAL INFO: (790.93)Elevated prostate specific antigen (PSA)

    Also under "Diagnostic Information" is as follows:
    F: Right Apex-FINAL DIAGNOSIS: Small focus of moderately differentiated adenocarcinoma, Gleason Score 3=3=6, measuring 2mm(10% of tissue).

    L: Right Apex Lat-FINAL DIAGNOSIS: Small focus of atypical glands, suspicious
    for adenocarcinoma.

    NOTE: Anti-cytokeratin(CK903)and p63 do not reveal the presence of basal cells. Anto-racemase(P504S)is positive within suspect epithelial cells. These data support the malignant diagnosis.

    As far as the lab results go, the results were confirmed by 2 uropathologists at the same lab, and checked again at Vanderbilt. My husband faxed his biopsy report to the Radiotherapy Clinics of Georgia (where they do the "ProstRcision procedure), in order to get another opinion. However, I believe that we need to be directed to an independent lab where they are not promoting their "wares". Any thoughts or direction on this? We live in TN and are new to the area from MI. Kind of lost...

    Enlarged Prostate
    dockbouy,

    I think Hopeful has given you some great advice. Most men your husband's age harbor some amount of indolent prostate cancer. It's most likely never going to pose a threat to his life. My feelings are that any treatment poses much more risk to decreasing quality of life than the active surveillance.

    Your husband's prostate is not just enlarged. It's enormous. It's like three times what an "enlarged" prostate is. The location of the prostate in the pelvic skeleton region means that the surround bone leaves the prostate no place to expand to and it is getting pressed against the surrounding skeletal structure. I am sure this is causing some sort of urinary discomfort such as having to get up frequently throughout the night, never being to fully empty his bladder, weak stream, and so forth. This is because the surrounding tissue is being forced up against the urethra which passes through the center of the prostate and it is squeezing it.

    I hope that you consult with some other urologists who can talk to your husband about options to reduce the size of his prostate. The swelling is caused by BPH, benign fibrous tissue that tends to grow inward in the prostate. A procedure known as a TURP can be effective in addressing this.

    I suspect that your husband's PSA is the result of the BPH. In the cramped quarter his prostate is literally squeezing the PSA out of the prostate cells and a higher rate than normal.

    In my lay opinion, I very much believe your main problem here is BPH and a runaway prostate not prostate cancer that is going to cause a future problem.

    Best of luck to you both.

    K
  • dockbouy
    dockbouy Member Posts: 11
    Beau2 said:

    Enlarged Prostate/Cancer
    Yo Adrienne,

    At 160 cc your husband's prostate is very large. I believe the average prostate size is 20 to 30 ccs. Mine was 70 cc and it caused me problems. Like a weak stream that was hard to start and getting up 2 or 3 times at night. Flomax, etc. did not help me.

    When I was diagnosed with PCa I was told that before I could start brachy they would need to reduce the size of the prostate to less than 50 cc, and that they would "try" to do this with hormone therapy. As I recall, I was told that if they were to try and treat my large (70 cc) prostate they would need to administer an unacceptable level of radiation. Therefore, I needed to do a few months of HT before they would administer the seeds.

    I chose surgery. As others have told you surgery can have side effects. For me the side effects have not been bad. I was immediately continenet (no urinary issues) and my ED can be handled with pills. At 65, I find many of my non-PCa friends also on pills.

    A benefit of the surgery has been improved urinary function. I sleep much better because I no longer have a need to get up at night. And, my flow is unbelievable ... like a race horse.

    You have some hard decisons in front of you. Take your time and do your research. If you haven't done so, I would recommend you read Dr. Patrick Walsch's book, "Guide to Surviving Prostate Cancer" and Dr. John Mulhall's book, "Saving Your Sex Life, A Guide for Men With Prostate Cancer". You can also find seminars by Dr. Mulhall on You Tube.

    Hope this helps. Best of luck in your fight against PCa.

    TURP
    Has anyone that has been diagnosed with PCa had TURP or another procedure to reduce the size of the prostate? If my husband chooses to do "active surveillance", does this seem to be good option, being that his Gleason score is moderate, and the size of the cancer is small?

    Also, there has been no suggestion of an MRI, PET Scan, bone scan to check to see if the cancer has made it outside the prostate. Wouldn't it make sense to check and treat the other cancer, if indeed it is present elsewhere?

    yoadrienne
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    Yo Adrienne!
    Well, you've certainly gotten an earful here and I hope you and your husband are taking stock.

    Fortunately, April is still a ways off and you have time to think about everything everyone has told you before allowing your husband to submit himself to the knife.

    If you browse the threads, you'll find that I am an outspoken opponent of the surgical removal of the prostate as a method of treating prostate cancer. There are just too many risks associated with it and there are alternate treatments available with the same level of success but without the risks associated with surgery.

    If you want to know what the risks of surgery are, please read the following article with describes them in clear detail:

    http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects

    As for alternate treatments, you're already aware of active surveillance which would certainly be suitable for your husband at his age and with his early stage and low grade cancer. However, if you and your husband can't live with the idea of "doing nothing," then I suggest you investigate CyberKnife and Proton Beam Therapy as alternate methods of treating the cancer.

    CyberKnife (CK) is currently the MOST accurate and precise method of treating prostate cancer and is able to attack the cancer within margins far smaller than possible with surgery. CK is so precise that it tracks for body and organ movement during treatment. This precision is also responsible for minimizing collateral tissue damage (common with other forms of radiation treatment, including "seeds") and thereby reducing common side effects such as ED and incontinence (which are both very common w/surgery).

    Proton Beam Therapy (PBT) is also a good alternative but it is older technology than CK and has certain limitations which IMHO make it a less attractive treatment method now. Some of the differences include the need for more treatments (28-40 vs only 4-5 for CK), fewer treatment sites than CK and the need to be seated in a body cast to restrict movement and the insertion of a water filled balloon in the rectum during each treatment (not required for CK).

    I and several other men here have been treated w/CK with no significant side effects and appropriate drops in their PSA levels (below 1 for most) which indicates successful treatment.

    I strongly suggest that you investigate these treatments BEFORE your husbands' scheduled surgery.

    BTW, I also think Kong's remarks are noteworthy. Your husband may have cancer but the size of his prostate is ENORMOUS at 168cc and that problem should probably be addressed before any action is taken to "treat" the cancer.

    Good luck!
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    dockbouy said:

    TURP
    Has anyone that has been diagnosed with PCa had TURP or another procedure to reduce the size of the prostate? If my husband chooses to do "active surveillance", does this seem to be good option, being that his Gleason score is moderate, and the size of the cancer is small?

    Also, there has been no suggestion of an MRI, PET Scan, bone scan to check to see if the cancer has made it outside the prostate. Wouldn't it make sense to check and treat the other cancer, if indeed it is present elsewhere?

    yoadrienne

    MRI with a spectroscopy
    Is appropriate to make sure that there is no extra capular extension; show where the cancer is located, one lope or two...at teaching hoapitals there are MRI machines with tesla 1.5 or with more definition 3.0 tesla magnets.....The MRI is covered b medicare, however the spectrorsopy is consider investigation, for some reason and is not covered...the spectroscopy provides better definition........please feel to click my name to see what I have been doing.

    A bone scan is not recommended for those with less than a gleason 8.

    Cyberknife, although a very precise, execellent treatment is invasive, radiating(frying) the tissue, and I personally would not do this or any other invsasive treatment such as surgery, etc. unless I really had to. Remember 70% of the cancers for those with low risk are indolent, and will require no invasive tretment.
  • Kongo
    Kongo Member Posts: 1,166 Member

    MRI with a spectroscopy
    Is appropriate to make sure that there is no extra capular extension; show where the cancer is located, one lope or two...at teaching hoapitals there are MRI machines with tesla 1.5 or with more definition 3.0 tesla magnets.....The MRI is covered b medicare, however the spectrorsopy is consider investigation, for some reason and is not covered...the spectroscopy provides better definition........please feel to click my name to see what I have been doing.

    A bone scan is not recommended for those with less than a gleason 8.

    Cyberknife, although a very precise, execellent treatment is invasive, radiating(frying) the tissue, and I personally would not do this or any other invsasive treatment such as surgery, etc. unless I really had to. Remember 70% of the cancers for those with low risk are indolent, and will require no invasive tretment.

    Fried Prostate?
    While we agree on most things, Ira, I think your choice of words here is misleading. CyberKnife doesn't "fry" anything and neither does any other type of radiation when administered properly. Technically, frying is cooking food in oil or fat. That's not at all what is happening here. The ionizing radiation alters the DNA in the prostate cancer cells causing them to be unable to conduct mitosis. There is sometimes some irritation caused by the ionizing energy but the term "frying" conjurs up bacon sizzling in the pan which is not what happens at all.

    In rare cases, radiation can cause scaring which causes problems. The scaring is caused by ionizing radiation which damages adjacent cells and nerves that eventually die. It's not like scaring which occurs after a scalpel makes a cut. CyberKnife, and IMRT for that matter, very accurately deliver the radiation which minimizes the possibility that these issues occur but everyone reacts differently.

    I know your opinion that radiation is invasive. I disagree on this as well although I would concede that fiducial placement is invasive because it is physically putting something into the prostate. For that matter, biopsies are invasive and, as you know, are frequently a regular part of active surveillance. Given my previously expressed opinions on biopsies I would rather have the radiation than repeated pokings into potentially cancerous sites with a needle gun, but overall I think active surveillance, particularly in the case germane to this particular post, is appropriate given what we know now. I do think a TURP is in order and that would have to be considered invasive.

    I think it's important that we be as precise as possible when describing treatments and their effects and medical terminology is rich enough to do this without frying things.

    Best,

    K
  • Duppie
    Duppie Member Posts: 2
    Yoadrienne
    I was in the same boat 2+ years ago. The only things I can share with you is what I have experienced. From the replies you can see that there are many roads you can take. Please note there are no u-turns allowed and decisions and actions cannot be reversed. You and your partner must be satisfied whatever the outcome will be. Please read my post from a long time ago. Now for the (personal)facts:
    1. With an enlarged prostate the chance of cancer cells escaping becomes a real possibility as the prostate cannot become bigger and they keep on multiplying. Its a real risk. Also if the prostate size can decrease the chances of the cells escaping also increase (my logic 101).
    2. Active surveilance is the worst type of gambling you can get. It is fine for people to recommend it but just read the posts of the men who realise they have cancer when it is too late. Whats the use of postponing the operation? You just get older which makes it more difficult to heal again. I am baffled by this.
    3. I had my prostate removed by the best surgeon in my country (South Africa) but to my shock I had a rising reading in a record time. He did an excellent job with the operation - just the way the cookie crumbles I guess. My brother on the other hand is on 0.0. Same doctor but normal size prostate.
    4. The immediate benefits are a) normal stream, b) reduced gout attacks as the urine is now leaving my body, c) lower back pain has vanished after 30 years of enduring it. The negatives are a) low testosterone count <150 whatever, b) extreme hot flashes that gets controlled with 3 weekly testosterone injections (not recommended but it works), c) total ed where nothing helps (we joke about it - lol).
    I transferred to a much lower stress work environment and my last reading was down by 0.1 after 2 years. This was from accelerating doubling numbers before. So I am happy with where I am now. My health has improved by a vast margin and I really feel good.
    I wish you the best for the future.

    Johan