pt3a feeling crushed.

djbuk
djbuk Member Posts: 24 Member
in Prostate Cancer #1
Hi everyone. would welcome any comments on my case. But first, would like to say that this site is probably one of the best around. Nothing close to it in the u.k. and that is why I have joined.

Anyway, here I go.

56yrs old. went for routine check-up last summer. complained of waking up once or twice during the night to urinate.
psa then was 3.2 (6.15.11)doctor advised another test straight away and this time it came back 3.5 (6.29.11). I was sent to see a urologist who ordered a biopsy although he said that prostate felt normal on dre.
Result of biopsy which was done on (9.30.11)2/10 cores on right positive (10% core length)T1c gleason 3+3=6

This was followed by mri scan and further psa test on 10.19.11.
On 11.10.11 I went to see consultant surgeon to discuss results. He said there was no apparent evidence of cancer outside the prostate. Psa was 3.6. A team of consultants (MDT multi disciplinary team) had discussed my case and the consensus was that I could have either RP, RT,Brachytherapy or I could do nothing and wait to see what happened next. He said that my pca may not ever be a problem if I chose to have no treatment although it was just as likely that I would be sitting in front of him again some time in the future discussing treatment options. And so I agreed to have RP laparoscopic on 22nd December 2011.
Operation did not go very well for me and I had emergency surgery 24hrs later after it was decided that stitches were not sealing resulting in urine leaking at bladder neck. Apart from this the surgeon said that all went well and that the removed prostate was very smooth. Another consultant told me that he thought that the RP would probably be the end of my treatment. And so I was sent home on 26th Decmber, a little sore but very happy with the outcome so far. I am not the most positive of people and so did not take for granted an "all clear" pathology report although I have to say that I was feeling very fortunate to have had my disease "caught" early with a lowish psa, gleason score and T1c stage. I was beginning to feel confident that I may be able to move on with my life putting this "event " behind me.
An appointment had been made for me by the hospital to attend on 1st Feb 2012 and I was reminded to have another psa test 7-10 days before this so they could have a complete picture. I should have known something was wrong when I was offered a much earlier appointment without the psa test being done.To be fair this could have been an administrative error. Anyway, I went ahead and had psa done again and kept to my original date. So here are the results, a little sketchy at this stage but hopefully enough for someone to offer some advise.
1st Feb 2012. 38x44x27mm 39.3g gleason 3+4=7 Apex margin positive
PT3a Nx Mx PSA<0.1

Im afraid that is all I have at this stage apart from a letter which was sent to my doctor. It reads "Adenocarcinoma of the prostate. Pre operatively Gleason 3+3=6 two cores positive on the right side occupying up to 10%, PSA 3.5, T1C. Laparoscopic radical prostatectomy 12.22.11. Final pathology Gleason 3+4=7, right apex involved (extra prostatic extension) equivocol circumferential margin P3a Nx Mx. Histology from this man's recent laparoscopic radical prostatectomy was discussed at our MDT meeting. Unfortunately, the pathology on the surgical specimen is worse than the pre-operative prostate biopsies had suggested and he has gleason 7 disease with some evidence of extra prostatic extension. I will see him in the clinic to discuss matters with him.It is likely that I will recommend that he considers the RADICALS study which looks at the role of radiotherapy in this situation"

During this last week I have researched the RADICALS trial. It is a 2 part trial whereby patients are randomized to receive different treatment approaches.The first part offers immediate RT or RT following a rise in PSA (adjuvant v salvage). The 2nd part offers RT, RT plus HT for 6months or RT Plus Ht for 2 years. I will be seeing oncologist soon to discuss the best option for my case. I had a brief discussion with a nurse who works with the oncologist and is monitoring the trial. She offered some hopefull words saying I am in a grey area, that the majority of men in my situation do not have bio recurrence, there may be no surviving cancer.

You may have guessed by now that I am being treated by the NHS in the UK. I can not afford private treatment but I can afford to pay for private consultations if any of you guys think this will give me an advantage. I have spent months trying to educate myself and this site is one of the places that I visit often. I'm getting the feeling that for Pt3a,no-one knows what to do next for the best - or when to do it.And so all I can do is make a choice on the RADICALS trial so please if any one of you is familiar with this siuation will you please be kind enough to share your thoughts.

All the very best to all of you.

Comments

  • tarhoosier
    tarhoosier Member Posts: 195 Member
    #2
    View from here
    DJ:
    My perspective is that you caught a good break here. Your mild version on biopsy was addressed, even though it might have been monitored for quite some time, or even ignored by a lesser qualified doctor. Good thing, too, since the result shows your disease was more than expected and monitoring would likely have been a mistake. Your pathology is actually not too bad for a man with any G4 in the gland. The apex is a hard part of the gland to dissect and the margin may come from such difficulty. The size of the margin is of some significance. Please obtain a copy of the Pathology report to see what the measurement was. Be certain that it was a single margin and only in the apex area. If everything is all as you have presented then you have a reasonable chance for long term success.
    First, healing. Make sure you take care of yourself and follow instructions to put yourself in first class shape as soon as possible. This refers to waterworks most pertinently. Any radiation to this area must wait until continence is regained. Focus there.
    The Radicals trial is an interesting one, but in my mind the result has already been determined. For those men who want to pursue adjuvant radiation within, say, six months of surgery, the results can be seen with the trial SWOG 8794. This is a practice changing result from the best of our researchers in this disease.
    For those who prefer to give themselves a break from doctors and treatment, then waiting for a rise in psa is also an option. Treatment may never be needed. PSA is a glorious way to track disease and many other diseases have researchers who would give body parts to have such a reliable instrument.
    As to the trial, I think you are a perfect candidate for the trial doctors, but the question is whether the trial is perfect for you, the patient.
    The good part is that you have time to learn, research, and talk to others. Go to your local support group. There is a PCA survivors group everywhere. USToo sponsors many. You are here asking questions. Good. Keep it up. You have many, many, many years ahead of you. Hug the wife and kiss the children, if any.
  • hunter49
    hunter49 Member Posts: 247 Member
    #3
    Hey mate sorry to see you
    Hey mate sorry to see you join from across the lake. We have a lot in common. My biopsy had 1 out of 15 cores posative 95% and a gleason 3+4. Afetr the surgery on 11/10/11 I was found to have a smaller tumor in the other lobe and upgraded to a 4+3. I was organ confined. All margings clean and no lymph or seminal vessels involved. What were your results on them?Even though prostatic extension was involved it my still be speciman conatained and you may be jumping the gun on treatnment. Look into the Kattan nanograms for the posability of a reoccurence given your case. YOu can find them on the Sloan Kettering website. YOu were probably a 3+4 all along and the slides were interperated wrong. If you have any other questions e-mail me or post. There are a lot of smart good men and women here.
  • djbuk
    djbuk Member Posts: 24 Member
    #4
    tarhoosier said:

    View from here
    DJ:
    My perspective is that you caught a good break here. Your mild version on biopsy was addressed, even though it might have been monitored for quite some time, or even ignored by a lesser qualified doctor. Good thing, too, since the result shows your disease was more than expected and monitoring would likely have been a mistake. Your pathology is actually not too bad for a man with any G4 in the gland. The apex is a hard part of the gland to dissect and the margin may come from such difficulty. The size of the margin is of some significance. Please obtain a copy of the Pathology report to see what the measurement was. Be certain that it was a single margin and only in the apex area. If everything is all as you have presented then you have a reasonable chance for long term success.
    First, healing. Make sure you take care of yourself and follow instructions to put yourself in first class shape as soon as possible. This refers to waterworks most pertinently. Any radiation to this area must wait until continence is regained. Focus there.
    The Radicals trial is an interesting one, but in my mind the result has already been determined. For those men who want to pursue adjuvant radiation within, say, six months of surgery, the results can be seen with the trial SWOG 8794. This is a practice changing result from the best of our researchers in this disease.
    For those who prefer to give themselves a break from doctors and treatment, then waiting for a rise in psa is also an option. Treatment may never be needed. PSA is a glorious way to track disease and many other diseases have researchers who would give body parts to have such a reliable instrument.
    As to the trial, I think you are a perfect candidate for the trial doctors, but the question is whether the trial is perfect for you, the patient.
    The good part is that you have time to learn, research, and talk to others. Go to your local support group. There is a PCA survivors group everywhere. USToo sponsors many. You are here asking questions. Good. Keep it up. You have many, many, many years ahead of you. Hug the wife and kiss the children, if any.

    Thanks for your swift response
    Many thanks to you,tarhoosier for getting back to me. I am waiting for an appointment date in order to meet with radio oncologist. I intend to get a proper and complete print out of pathology report at that time and will post details for you to look over. My counsellor nurse told me that it was just the one margin and that the extraprostatic region was microscopic. However, the surgeon used the term "equivicol circumferential" to describe the remainder. I beleive that this means maybe/maybe not.

    I took a look at SWOG 8794 and yes, it does say that early adjuvant RT is advantageous. Thankyou again for your reply and please look out for further posts from me.
  • djbuk
    djbuk Member Posts: 24 Member
    #5
    hunter49 said:

    Hey mate sorry to see you
    Hey mate sorry to see you join from across the lake. We have a lot in common. My biopsy had 1 out of 15 cores posative 95% and a gleason 3+4. Afetr the surgery on 11/10/11 I was found to have a smaller tumor in the other lobe and upgraded to a 4+3. I was organ confined. All margings clean and no lymph or seminal vessels involved. What were your results on them?Even though prostatic extension was involved it my still be speciman conatained and you may be jumping the gun on treatnment. Look into the Kattan nanograms for the posability of a reoccurence given your case. YOu can find them on the Sloan Kettering website. YOu were probably a 3+4 all along and the slides were interperated wrong. If you have any other questions e-mail me or post. There are a lot of smart good men and women here.

    Thanks for that hunter49
    My surgeon said that the cancer had broken through the prostate into a margin of tissue and was present up to the edge of that margin. The likelyhood,to me therefore is that at least some cancer remains.
    However, he also said that if there is remaining cancer it may not survive in its' new environment.
    He didn't talk about lymph/seminal vessel involvement - just NX MX on the letter but
    I will ask about this when I see my oncologist.
    Thankyou for the info about Kattan nanograms. I will take a look at these tonight.
    So very true (what you say about this site). I am so glad to have found it. Anyway, best wishes to you, hunter49 and thankyou for the invite to e-mail you.

    djbuk
  • djbuk
    djbuk Member Posts: 24 Member
    #6
    djbuk said:

    Thanks for that hunter49
    My surgeon said that the cancer had broken through the prostate into a margin of tissue and was present up to the edge of that margin. The likelyhood,to me therefore is that at least some cancer remains.
    However, he also said that if there is remaining cancer it may not survive in its' new environment.
    He didn't talk about lymph/seminal vessel involvement - just NX MX on the letter but
    I will ask about this when I see my oncologist.
    Thankyou for the info about Kattan nanograms. I will take a look at these tonight.
    So very true (what you say about this site). I am so glad to have found it. Anyway, best wishes to you, hunter49 and thankyou for the invite to e-mail you.

    djbuk

    PT3A questions
    Hello again to all.

    Am booked to see clinical oncologist tomorrow and have put together some questions.

    1. Please may I have a copy of my pathology report
    2. MxNx What can be done to assess these now
    3. Seminal vesicle involement - is there any?
    4. Was the positive apex margin the only positive margin
    5. What does equivocal circumferential mean
    6. What is the ratio of 3 to 4 in my gleason score

    In addition to these I would like to find out what type and how effective etc. the radiation equipment is. Since I am fairly newly diagnosed I dont have many ideas about what I should be asking and so could someone please be kind enough to offer a few suggestions?

    I have checked out the consultant and found that she is a specialist in urological radiotherapy and has about 12yrs experience. The nhs hospital is amongst other things a cancer centre and the encatchment population over 700,000. It was found to be the safest u.k. hospital recently although it is not a centre of excellence for prostate cancer like some of the places you mention in the U.S.

    Now, having said all that, I have been unable to decide on a choice for treatment in the randomized trial:1. no treatment until rise in psa v immediate radiation or 2. immediate radiation, immediate radiation with 6 mnth hormone treatment or immediate radiation with 2 yr hormone treatment. I will have to decide during the next few days because they need to administer the trial and I am not the only one in it. And so, I would appreciate your help
    very much.

    djbuk
  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #7
    djbuk said:

    PT3A questions
    Hello again to all.

    Am booked to see clinical oncologist tomorrow and have put together some questions.

    1. Please may I have a copy of my pathology report
    2. MxNx What can be done to assess these now
    3. Seminal vesicle involement - is there any?
    4. Was the positive apex margin the only positive margin
    5. What does equivocal circumferential mean
    6. What is the ratio of 3 to 4 in my gleason score

    In addition to these I would like to find out what type and how effective etc. the radiation equipment is. Since I am fairly newly diagnosed I dont have many ideas about what I should be asking and so could someone please be kind enough to offer a few suggestions?

    I have checked out the consultant and found that she is a specialist in urological radiotherapy and has about 12yrs experience. The nhs hospital is amongst other things a cancer centre and the encatchment population over 700,000. It was found to be the safest u.k. hospital recently although it is not a centre of excellence for prostate cancer like some of the places you mention in the U.S.

    Now, having said all that, I have been unable to decide on a choice for treatment in the randomized trial:1. no treatment until rise in psa v immediate radiation or 2. immediate radiation, immediate radiation with 6 mnth hormone treatment or immediate radiation with 2 yr hormone treatment. I will have to decide during the next few days because they need to administer the trial and I am not the only one in it. And so, I would appreciate your help
    very much.

    djbuk

    Pleasing your doctors
    DJ

    It seems to me that you are kind of rushing things just for the sake of pleasing your doctors.
    You do not comment on the other aspects of your surgery and I wonder if healing from the problem you mention (“urine leaking at bladder neck”) is 100% secured already. The fact is that if continence is not yet obtained then RT may lead to worse diagnosis.

    The trial protocols you pointed out are related to traditional modern methods of treatment that surely you would get even without such trial. I would recommend you to educate firstly on the problem, give time to heal properly and then commit if recurrence is present. The nurse consultant point of view got its logics and it is correct in terms that you are in the “gray area” for recurrence.
    It is absolutely natural to wait for a signal of recurrence before committing to a secondary treatment. I would recommend you to get a second opinion from other specialist away from the present team of doctors.

    Here are some questions that you can adapt to your list;
    http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

    Nx Mx means that they have not dissected any nodes at surgery (typical in robotic operations) and therefore, it is unknown if cancer is present at those places.

    Just do not rush. You can always be readmitted to the trial later if you decide it.

    Wishing you peace of mind.

    VGama
  • bdhilton
    bdhilton Member Posts: 866 Member
    #8
    Hey I understand I'm a T3B
    Lot of good and positive information with higher risk post surgery T3 rating... This site below is one of the best out there for medical studies for us laymen (IMHO)...I’m 2 years out post surgery and doing great…..Best to you in this journey and if you have any questions we can exchange email address and phone numbers...

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430098/?tool=pmcentrez

    "...Only 4 factors had a statistically significant association with incident prostate cancer: higher tomato sauce intake was associated with a decreased risk, and African–American race, a positive family history of prostate cancer, and higher α-linolenic acid intake were associated with an increased risk. In contrast, most items were significantly associated with risk of fatal prostate cancer. Specifically, recent smoking history, positive family history of prostate cancer, taller height, higher BMI, and high intake of total energy, calcium and α-linolenic acid were associated with a statistically significant increased risk, whereas higher vigorous physical activity level was associated with lower risk of fatal prostate cancer. For tomato sauce, the magnitude of the inverse association was similar for fatal as for total prostate cancer, and the smaller numbers may have prevented us from detecting a statistically significant association with fatal prostate cancer..."
  • tarhoosier
    tarhoosier Member Posts: 195 Member
    #9
    VascodaGama said:

    Pleasing your doctors
    DJ

    It seems to me that you are kind of rushing things just for the sake of pleasing your doctors.
    You do not comment on the other aspects of your surgery and I wonder if healing from the problem you mention (“urine leaking at bladder neck”) is 100% secured already. The fact is that if continence is not yet obtained then RT may lead to worse diagnosis.

    The trial protocols you pointed out are related to traditional modern methods of treatment that surely you would get even without such trial. I would recommend you to educate firstly on the problem, give time to heal properly and then commit if recurrence is present. The nurse consultant point of view got its logics and it is correct in terms that you are in the “gray area” for recurrence.
    It is absolutely natural to wait for a signal of recurrence before committing to a secondary treatment. I would recommend you to get a second opinion from other specialist away from the present team of doctors.

    Here are some questions that you can adapt to your list;
    http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

    Nx Mx means that they have not dissected any nodes at surgery (typical in robotic operations) and therefore, it is unknown if cancer is present at those places.

    Just do not rush. You can always be readmitted to the trial later if you decide it.

    Wishing you peace of mind.

    VGama

    Good Point
    Vasco makes a good point. The options offered by the trial are the same options available in any case. There is no reason to feel rushed to make a decision for the trial. Any doctor pressuring you needs to relax. That trial will accrue eventually and you have no reason to support it if you do not wish to.
    The absolute key thing is that no radiation treatment is to begin until your healing has established confidence in continence. Radiation will "freeze" tissue at that time and the necrotic (dead) tissue remaining will likely never improve. Thus radiation before complete recovery of function, or nearly so, is in error.
  • djbuk
    djbuk Member Posts: 24 Member
    #10
    bdhilton said:

    Hey I understand I'm a T3B
    Lot of good and positive information with higher risk post surgery T3 rating... This site below is one of the best out there for medical studies for us laymen (IMHO)...I’m 2 years out post surgery and doing great…..Best to you in this journey and if you have any questions we can exchange email address and phone numbers...

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430098/?tool=pmcentrez

    "...Only 4 factors had a statistically significant association with incident prostate cancer: higher tomato sauce intake was associated with a decreased risk, and African–American race, a positive family history of prostate cancer, and higher α-linolenic acid intake were associated with an increased risk. In contrast, most items were significantly associated with risk of fatal prostate cancer. Specifically, recent smoking history, positive family history of prostate cancer, taller height, higher BMI, and high intake of total energy, calcium and α-linolenic acid were associated with a statistically significant increased risk, whereas higher vigorous physical activity level was associated with lower risk of fatal prostate cancer. For tomato sauce, the magnitude of the inverse association was similar for fatal as for total prostate cancer, and the smaller numbers may have prevented us from detecting a statistically significant association with fatal prostate cancer..."

    Visited clinical oncologist today
    But first of all, Thankyou for your replies to my last post. Vascoda and tarhoosier, very good points that I have taken on board. Actually, The NHS u.k. will offer further treatment after 2 consecutive rises in psa or if new treatable symptoms appear. However, since the service is essentially free of charge it is trimmed here and there for "efficiency". The result being that consultants have very limited time to spend with overwhelming numbers of NHS patients that just keep on coming. These same consultants also work for for private hospitals and receive big money for this. They are super busy and their time is seriously managed. The result is that NHS patients feel gratefull and humble for the "free" service and want to be good patients. This is what you (Vascoda) picked up in my last post.

    bdhilton,I have become a vegetarian, am eating olives, raw garlic (lovely), tomatoes, tomatoes and even more tomatoes, organic fruit etc.etc. I dont smoke (stopped 3 yrs ago), am not overweight and like vascoda I walk about 5 miles every day. Thankyou for the link. The a-linolenic info. has given me something to think about because I eat soya margarine. What do you think? Also, did you have adjuvant radiation?

    And so, as I was saying, I visited the clinical oncologist today. She was lovely. She asked about my life, my children, my job (not worked since diagnosis)and how I was coping etc. And then she talked about my pathology report. She was amazed and genuinely pleased that I was able to understand what she said about the report. "You may not need treatment" she said. "If we knew that radiation would be beneficial for you now we would give it without delay" and so on. On the down side she was at times a little patronizing to me - "the gleason score has only gone up a little - hardly anything, from 6 to 7" but on the upside she did allow time for me to ask my questions and answered them as best she could. However, after about 20 mns. body language was beginning to signal the exit and a "gratefull" but enlightened NHS patient left the room.

    1. Can I have a copy of pathology report
    (yes, you will have it within 48 hrs)
    2. MX NX, what can be done to assess these
    ( lymph nodes were seen on mri scan as not enlarged and are considered free of cancer)
    3.were seminal vesicles involved
    (No)
    4 what was the size of the margin and waht was the ratio of 3 to 4 ref. gleason
    (couldn't find this info. on pathology report)
    5 Was this the only positive margin
    ( base was clear, equivocal circumferential, apex may well be positive. Some positive tissue was recovered that could have been a part of the prostate and if not from just outside the gland. In my opinion, it is not conclusive that this margin was positive)
    Since I did not record what she said I am unable to recall if these were her exact words.
    6 would Radiation cause permanent E.D
    (In you case, very likely)
    7.What type of radiation equipment does this hospital use
    (3d Conformal)
    8. I am 56, reasonably healthy. what do you think are my chances of being permanently incontinent.
    ( no guarantees but you have an excellent chance of responding well to radiation)


    I should receive pathology report tomorrow and will post details. Meanwhile, I am going to obtain further information i.e. slides etc. and pay for a second opinion from a urologist 200 miles away ( my son lives in the midlands u.k.)

    Incidentally, I am 99% continent atm. but close to nothing happening regarding E.D.

    Finally, not being too clever in the virtual world, can I ask, shouldI simply include my e-mail address in the post if I wish some one to have it?

    Thanks again for your responses and God bless you all.

    djbuk
  • tarhoosier
    tarhoosier Member Posts: 195 Member
    #11
    djbuk said:

    Visited clinical oncologist today
    But first of all, Thankyou for your replies to my last post. Vascoda and tarhoosier, very good points that I have taken on board. Actually, The NHS u.k. will offer further treatment after 2 consecutive rises in psa or if new treatable symptoms appear. However, since the service is essentially free of charge it is trimmed here and there for "efficiency". The result being that consultants have very limited time to spend with overwhelming numbers of NHS patients that just keep on coming. These same consultants also work for for private hospitals and receive big money for this. They are super busy and their time is seriously managed. The result is that NHS patients feel gratefull and humble for the "free" service and want to be good patients. This is what you (Vascoda) picked up in my last post.

    bdhilton,I have become a vegetarian, am eating olives, raw garlic (lovely), tomatoes, tomatoes and even more tomatoes, organic fruit etc.etc. I dont smoke (stopped 3 yrs ago), am not overweight and like vascoda I walk about 5 miles every day. Thankyou for the link. The a-linolenic info. has given me something to think about because I eat soya margarine. What do you think? Also, did you have adjuvant radiation?

    And so, as I was saying, I visited the clinical oncologist today. She was lovely. She asked about my life, my children, my job (not worked since diagnosis)and how I was coping etc. And then she talked about my pathology report. She was amazed and genuinely pleased that I was able to understand what she said about the report. "You may not need treatment" she said. "If we knew that radiation would be beneficial for you now we would give it without delay" and so on. On the down side she was at times a little patronizing to me - "the gleason score has only gone up a little - hardly anything, from 6 to 7" but on the upside she did allow time for me to ask my questions and answered them as best she could. However, after about 20 mns. body language was beginning to signal the exit and a "gratefull" but enlightened NHS patient left the room.

    1. Can I have a copy of pathology report
    (yes, you will have it within 48 hrs)
    2. MX NX, what can be done to assess these
    ( lymph nodes were seen on mri scan as not enlarged and are considered free of cancer)
    3.were seminal vesicles involved
    (No)
    4 what was the size of the margin and waht was the ratio of 3 to 4 ref. gleason
    (couldn't find this info. on pathology report)
    5 Was this the only positive margin
    ( base was clear, equivocal circumferential, apex may well be positive. Some positive tissue was recovered that could have been a part of the prostate and if not from just outside the gland. In my opinion, it is not conclusive that this margin was positive)
    Since I did not record what she said I am unable to recall if these were her exact words.
    6 would Radiation cause permanent E.D
    (In you case, very likely)
    7.What type of radiation equipment does this hospital use
    (3d Conformal)
    8. I am 56, reasonably healthy. what do you think are my chances of being permanently incontinent.
    ( no guarantees but you have an excellent chance of responding well to radiation)


    I should receive pathology report tomorrow and will post details. Meanwhile, I am going to obtain further information i.e. slides etc. and pay for a second opinion from a urologist 200 miles away ( my son lives in the midlands u.k.)

    Incidentally, I am 99% continent atm. but close to nothing happening regarding E.D.

    Finally, not being too clever in the virtual world, can I ask, shouldI simply include my e-mail address in the post if I wish some one to have it?

    Thanks again for your responses and God bless you all.

    djbuk

    Questions
    Well reported, djbuk.
    Second opinion on slides from urologist-Do you mean biopsy slides? If so this is superseded by pathology from specimen.
    If you mean the specimen pathology from the surgery then a urologist is not what you want. You want a pathologist and preferably one who is an expert. In this case staying within the NHS is not required as slides may be sent anywhere in the world and for 350 GBP can be arranged (350 GBP or thereabouts)
    Email: I do not recommend including it here. It can be spammed, stolen and otherwise mis-used.
    Private messages can be sent using the CSN site here and then arrangements made for more personal contact.
    The Prostate Cancer Charity is a UK PCa site with many members and a lively board and I recommend it for men such as you. There are also active PCa survivor groups all over the world. Join your local group and meet the men (and women) who go there. You need not depend on this site. In fact this is one of the worst places for treatment advice. We are all amateurs and know next to nothing about your case.
    Your cleverness and savvy are quite apparent. Again, you have time to investigate, you are an educated patient, your disease factors are in your favor. You have a very, very long time to go.
  • bdhilton
    bdhilton Member Posts: 866 Member
    #12
    djbuk said:

    Visited clinical oncologist today
    But first of all, Thankyou for your replies to my last post. Vascoda and tarhoosier, very good points that I have taken on board. Actually, The NHS u.k. will offer further treatment after 2 consecutive rises in psa or if new treatable symptoms appear. However, since the service is essentially free of charge it is trimmed here and there for "efficiency". The result being that consultants have very limited time to spend with overwhelming numbers of NHS patients that just keep on coming. These same consultants also work for for private hospitals and receive big money for this. They are super busy and their time is seriously managed. The result is that NHS patients feel gratefull and humble for the "free" service and want to be good patients. This is what you (Vascoda) picked up in my last post.

    bdhilton,I have become a vegetarian, am eating olives, raw garlic (lovely), tomatoes, tomatoes and even more tomatoes, organic fruit etc.etc. I dont smoke (stopped 3 yrs ago), am not overweight and like vascoda I walk about 5 miles every day. Thankyou for the link. The a-linolenic info. has given me something to think about because I eat soya margarine. What do you think? Also, did you have adjuvant radiation?

    And so, as I was saying, I visited the clinical oncologist today. She was lovely. She asked about my life, my children, my job (not worked since diagnosis)and how I was coping etc. And then she talked about my pathology report. She was amazed and genuinely pleased that I was able to understand what she said about the report. "You may not need treatment" she said. "If we knew that radiation would be beneficial for you now we would give it without delay" and so on. On the down side she was at times a little patronizing to me - "the gleason score has only gone up a little - hardly anything, from 6 to 7" but on the upside she did allow time for me to ask my questions and answered them as best she could. However, after about 20 mns. body language was beginning to signal the exit and a "gratefull" but enlightened NHS patient left the room.

    1. Can I have a copy of pathology report
    (yes, you will have it within 48 hrs)
    2. MX NX, what can be done to assess these
    ( lymph nodes were seen on mri scan as not enlarged and are considered free of cancer)
    3.were seminal vesicles involved
    (No)
    4 what was the size of the margin and waht was the ratio of 3 to 4 ref. gleason
    (couldn't find this info. on pathology report)
    5 Was this the only positive margin
    ( base was clear, equivocal circumferential, apex may well be positive. Some positive tissue was recovered that could have been a part of the prostate and if not from just outside the gland. In my opinion, it is not conclusive that this margin was positive)
    Since I did not record what she said I am unable to recall if these were her exact words.
    6 would Radiation cause permanent E.D
    (In you case, very likely)
    7.What type of radiation equipment does this hospital use
    (3d Conformal)
    8. I am 56, reasonably healthy. what do you think are my chances of being permanently incontinent.
    ( no guarantees but you have an excellent chance of responding well to radiation)


    I should receive pathology report tomorrow and will post details. Meanwhile, I am going to obtain further information i.e. slides etc. and pay for a second opinion from a urologist 200 miles away ( my son lives in the midlands u.k.)

    Incidentally, I am 99% continent atm. but close to nothing happening regarding E.D.

    Finally, not being too clever in the virtual world, can I ask, shouldI simply include my e-mail address in the post if I wish some one to have it?

    Thanks again for your responses and God bless you all.

    djbuk

    djbuk,It was originally
    djbuk,

    I will be 57 in a couple of weeks. It was originally recommend that I have adjunct about 8-10 weeks after surgery because of my T3b status but after a lengthy discussions with my medical team, two zero PSAs coupled with my diet and exercise program my Oncologist agreed with me to forgo the adjunct unless my PSA began to rise (in fact he said he would do the same thing I was asking their blessing on).

    The benefits are obvious (i.e. no radiation) and if I need salvage at some point in time the statically benefit I see is about 2-3% between adjunct and salvage...In addition and based on other factors, I have gone 2 years without complications (PSA issues) so that places me in another statistical group...Having said that, that is what I believe...

    From my view point, you are on the right track with your diet and exercise…I believe we all have to believe in our treatments and I believe in mine like you need to believe in yours…

    Yes the soy thing is interesting but my Oncologist told me no more than one serving of soy per day prior to my surgery 2 years ago….and I am sure lots of guys do not know this but then again it is a statistical study…

    All the best to you in your journey…Below is my post surgery summary-


    Exam Date and Time: 3/3/2010 12:00 PM Results Date and Time: 3/8/2010 8:18 PM
    Final Diagnosis
    A. Lymph Node, Right Pelvic, Excision:
    -One Lymph Node, Negative for Metastatic Carcinoma
    B. Lymph Node, Left Pelvic, Excision:
    -One Lymph Node, Negative for Metastatic Carcinoma
    C. Prostate and Seminal Vesicles, Radical Prostatectomy:
    -Prostate Adenocarcinoma with Focal Ductal Differentiation, Gleason’s Score 4+3=7, involving both the Right and Left Prostate Lobes
    -A tertiary Gleason’s Pattern 5 Component is Present
    -Extensive Extra Prostatic Extension is Identified Involving the Right Apex, The Right and Left Mid, And The Right Base
    -The Adenocarcinoma Focally Extends To The Inked Margin In The Right mid Prostate (Slides C8 and C9)
    -The Adenocarcinoma Invades Into The Right Seminal Vesicle
    -The Left Seminal Vesicle Is Free Of Tumor
    -The Remaining Surgical Margins Are Free Of Tumor
    -Intraductal Spread of Adenocarcinoma is Present (See Notes).
    -Extensive Perineural Invasion is Present
    No lymph vascular Space is Present
    -The Dominant Tumor Nodule is Present in The Right Prostatic Base and Measures 2.2 CM in the Greatest Dimension.
    -Additional Tumor Nodules Are Present In The Left Apex, Right Apex, Right and Left Mid Prostates, and The Left base. The Adenocarcinoma is Present In 24 of 34 Submitted Slides And Involves Approximately 18% of the Prostatic Volume.

    -High Grade Prostatic Intraepithelial Neoplasia.
    Note: The positive surgical margins are in an area of extra prostatice extension. The ductal differentiation is best appreciated in slides C33 and is focal in nature (less than 5% of the total tumor). A PIN4 immunohistochomical stains perform on block C23 supports the diagnosis of intrductal spread of carcinoma. Dr; Ximing Yang has reviewed selected slides for this case and agrees with the above interpretation of margin status and seminal vesicle invasion.

    This test was developed and its performance characteristics were determined by the Northwestern Memorial Hospital Immujnohistochemistry Laboratory. It has not been cleared or approved by the U.S. Food and Drug Administration. The FDA has determined that such clearance or approval is not necessary. This tst is used for clinical purposes. It should not be regarded as investigational or for research. This laboratory is certified under the Clinical Laboratory Improvement Amendments of 1900 (CLIA-00) as qualified to perform high complexity clinical laboratory testing.

    The positive Control demonstrates appropriate positive staining. The known tissue negative controls were negative. The non-immune serum control was non-reactive.

    Prostatic Cancer Staging Summary:

    Tumor Type: Acinar with Focal Ductal Differentiation

    Gleason Score
    Primary + Secondary: 4+3=7
    Tertiary: Pattern 5

    Location Main Tumor: Prostatic Base
    Location Additional Tumor Nodules: Left Apex, Right Apex, Right Mid, Left Mid, and Left Base

    Extraprostatic Extension
    Focal (<2 Microscopic FOCI): N/A
    Established (Extensive): Present and Extensive

    Margins
    Apical Margin: Free of Tumor
    Bladder and Urethral: Free of Tumor
    Other Surgical Margins: Positive, right mid Prostate

    Seminal Vesicles: Positive for Carcinoma
    Location, If Involved: Right Seminal Vesicles

    Perineural Invasion: Present

    Lymphatic/Vascular Invasion: Not Identified

    Total Lymph Nodes: 2
    Number positive: 0
    Tumor Volume Approximately 18%
    Tumor (T): pT3b
    Metastasis (M): pMX
    Nodes (N): pN0
  • bdhilton
    bdhilton Member Posts: 866 Member
    #13
    djbuk said:

    Visited clinical oncologist today
    But first of all, Thankyou for your replies to my last post. Vascoda and tarhoosier, very good points that I have taken on board. Actually, The NHS u.k. will offer further treatment after 2 consecutive rises in psa or if new treatable symptoms appear. However, since the service is essentially free of charge it is trimmed here and there for "efficiency". The result being that consultants have very limited time to spend with overwhelming numbers of NHS patients that just keep on coming. These same consultants also work for for private hospitals and receive big money for this. They are super busy and their time is seriously managed. The result is that NHS patients feel gratefull and humble for the "free" service and want to be good patients. This is what you (Vascoda) picked up in my last post.

    bdhilton,I have become a vegetarian, am eating olives, raw garlic (lovely), tomatoes, tomatoes and even more tomatoes, organic fruit etc.etc. I dont smoke (stopped 3 yrs ago), am not overweight and like vascoda I walk about 5 miles every day. Thankyou for the link. The a-linolenic info. has given me something to think about because I eat soya margarine. What do you think? Also, did you have adjuvant radiation?

    And so, as I was saying, I visited the clinical oncologist today. She was lovely. She asked about my life, my children, my job (not worked since diagnosis)and how I was coping etc. And then she talked about my pathology report. She was amazed and genuinely pleased that I was able to understand what she said about the report. "You may not need treatment" she said. "If we knew that radiation would be beneficial for you now we would give it without delay" and so on. On the down side she was at times a little patronizing to me - "the gleason score has only gone up a little - hardly anything, from 6 to 7" but on the upside she did allow time for me to ask my questions and answered them as best she could. However, after about 20 mns. body language was beginning to signal the exit and a "gratefull" but enlightened NHS patient left the room.

    1. Can I have a copy of pathology report
    (yes, you will have it within 48 hrs)
    2. MX NX, what can be done to assess these
    ( lymph nodes were seen on mri scan as not enlarged and are considered free of cancer)
    3.were seminal vesicles involved
    (No)
    4 what was the size of the margin and waht was the ratio of 3 to 4 ref. gleason
    (couldn't find this info. on pathology report)
    5 Was this the only positive margin
    ( base was clear, equivocal circumferential, apex may well be positive. Some positive tissue was recovered that could have been a part of the prostate and if not from just outside the gland. In my opinion, it is not conclusive that this margin was positive)
    Since I did not record what she said I am unable to recall if these were her exact words.
    6 would Radiation cause permanent E.D
    (In you case, very likely)
    7.What type of radiation equipment does this hospital use
    (3d Conformal)
    8. I am 56, reasonably healthy. what do you think are my chances of being permanently incontinent.
    ( no guarantees but you have an excellent chance of responding well to radiation)


    I should receive pathology report tomorrow and will post details. Meanwhile, I am going to obtain further information i.e. slides etc. and pay for a second opinion from a urologist 200 miles away ( my son lives in the midlands u.k.)

    Incidentally, I am 99% continent atm. but close to nothing happening regarding E.D.

    Finally, not being too clever in the virtual world, can I ask, shouldI simply include my e-mail address in the post if I wish some one to have it?

    Thanks again for your responses and God bless you all.

    djbuk

    djbuk see below
    see my next commnet
  • djbuk
    djbuk Member Posts: 24 Member
    #14
    bdhilton said:

    djbuk,It was originally
    djbuk,

    I will be 57 in a couple of weeks. It was originally recommend that I have adjunct about 8-10 weeks after surgery because of my T3b status but after a lengthy discussions with my medical team, two zero PSAs coupled with my diet and exercise program my Oncologist agreed with me to forgo the adjunct unless my PSA began to rise (in fact he said he would do the same thing I was asking their blessing on).

    The benefits are obvious (i.e. no radiation) and if I need salvage at some point in time the statically benefit I see is about 2-3% between adjunct and salvage...In addition and based on other factors, I have gone 2 years without complications (PSA issues) so that places me in another statistical group...Having said that, that is what I believe...

    From my view point, you are on the right track with your diet and exercise…I believe we all have to believe in our treatments and I believe in mine like you need to believe in yours…

    Yes the soy thing is interesting but my Oncologist told me no more than one serving of soy per day prior to my surgery 2 years ago….and I am sure lots of guys do not know this but then again it is a statistical study…

    All the best to you in your journey…Below is my post surgery summary-


    Exam Date and Time: 3/3/2010 12:00 PM Results Date and Time: 3/8/2010 8:18 PM
    Final Diagnosis
    A. Lymph Node, Right Pelvic, Excision:
    -One Lymph Node, Negative for Metastatic Carcinoma
    B. Lymph Node, Left Pelvic, Excision:
    -One Lymph Node, Negative for Metastatic Carcinoma
    C. Prostate and Seminal Vesicles, Radical Prostatectomy:
    -Prostate Adenocarcinoma with Focal Ductal Differentiation, Gleason’s Score 4+3=7, involving both the Right and Left Prostate Lobes
    -A tertiary Gleason’s Pattern 5 Component is Present
    -Extensive Extra Prostatic Extension is Identified Involving the Right Apex, The Right and Left Mid, And The Right Base
    -The Adenocarcinoma Focally Extends To The Inked Margin In The Right mid Prostate (Slides C8 and C9)
    -The Adenocarcinoma Invades Into The Right Seminal Vesicle
    -The Left Seminal Vesicle Is Free Of Tumor
    -The Remaining Surgical Margins Are Free Of Tumor
    -Intraductal Spread of Adenocarcinoma is Present (See Notes).
    -Extensive Perineural Invasion is Present
    No lymph vascular Space is Present
    -The Dominant Tumor Nodule is Present in The Right Prostatic Base and Measures 2.2 CM in the Greatest Dimension.
    -Additional Tumor Nodules Are Present In The Left Apex, Right Apex, Right and Left Mid Prostates, and The Left base. The Adenocarcinoma is Present In 24 of 34 Submitted Slides And Involves Approximately 18% of the Prostatic Volume.

    -High Grade Prostatic Intraepithelial Neoplasia.
    Note: The positive surgical margins are in an area of extra prostatice extension. The ductal differentiation is best appreciated in slides C33 and is focal in nature (less than 5% of the total tumor). A PIN4 immunohistochomical stains perform on block C23 supports the diagnosis of intrductal spread of carcinoma. Dr; Ximing Yang has reviewed selected slides for this case and agrees with the above interpretation of margin status and seminal vesicle invasion.

    This test was developed and its performance characteristics were determined by the Northwestern Memorial Hospital Immujnohistochemistry Laboratory. It has not been cleared or approved by the U.S. Food and Drug Administration. The FDA has determined that such clearance or approval is not necessary. This tst is used for clinical purposes. It should not be regarded as investigational or for research. This laboratory is certified under the Clinical Laboratory Improvement Amendments of 1900 (CLIA-00) as qualified to perform high complexity clinical laboratory testing.

    The positive Control demonstrates appropriate positive staining. The known tissue negative controls were negative. The non-immune serum control was non-reactive.

    Prostatic Cancer Staging Summary:

    Tumor Type: Acinar with Focal Ductal Differentiation

    Gleason Score
    Primary + Secondary: 4+3=7
    Tertiary: Pattern 5

    Location Main Tumor: Prostatic Base
    Location Additional Tumor Nodules: Left Apex, Right Apex, Right Mid, Left Mid, and Left Base

    Extraprostatic Extension
    Focal (<2 Microscopic FOCI): N/A
    Established (Extensive): Present and Extensive

    Margins
    Apical Margin: Free of Tumor
    Bladder and Urethral: Free of Tumor
    Other Surgical Margins: Positive, right mid Prostate

    Seminal Vesicles: Positive for Carcinoma
    Location, If Involved: Right Seminal Vesicles

    Perineural Invasion: Present

    Lymphatic/Vascular Invasion: Not Identified

    Total Lymph Nodes: 2
    Number positive: 0
    Tumor Volume Approximately 18%
    Tumor (T): pT3b
    Metastasis (M): pMX
    Nodes (N): pN0</p>

    Finally received pathology report
    Would be very thankfull if you guys can give an opinion.



    Tumour type; Microacinar

    Gleason grade;

    Primary; 3

    Secondary; 4

    Tertiary; N/A

    Gleason score; 3+4=7

    Organ confined; NO

    Into bladder neck; NO

    Into seminal vesicle; NO

    Fixed or into adjacent organs or pelvic wall; NO

    Beyond the outline of the prostate; YES

    Apex margin;
    Positive; Probably extra-prostatic but difficult toassess due to muscle fibres blending with capsule. Location of involvement; Central right.

    Base margin;
    Negative; Distance to margin approximately 6mm on right

    Circumferential margin;
    Positive; Confined within prostate. Location of involvement; Right apical anterolateral (see comments)


    Zones containing tumour

    Measurement of largest focus of tumour 23mm

    Approximate % involvement of surface area by tumour 25%

    Vascular invasion; Not seen

    PT3a (EPE)

    PNX

    PMX

    Comments;

    At the site of
    circumferential margin involvement there is a partly detached strip of fibromuscular tissue possibly denuded capsule. Hence there is a suspicion that the inked margin is not a true surgical margin.



    All the best DJBUK
  • tarhoosier
    tarhoosier Member Posts: 195 Member
    #15
    djbuk said:

    Finally received pathology report
    Would be very thankfull if you guys can give an opinion.



    Tumour type; Microacinar

    Gleason grade;

    Primary; 3

    Secondary; 4

    Tertiary; N/A

    Gleason score; 3+4=7

    Organ confined; NO

    Into bladder neck; NO

    Into seminal vesicle; NO

    Fixed or into adjacent organs or pelvic wall; NO

    Beyond the outline of the prostate; YES

    Apex margin;
    Positive; Probably extra-prostatic but difficult toassess due to muscle fibres blending with capsule. Location of involvement; Central right.

    Base margin;
    Negative; Distance to margin approximately 6mm on right

    Circumferential margin;
    Positive; Confined within prostate. Location of involvement; Right apical anterolateral (see comments)


    Zones containing tumour

    Measurement of largest focus of tumour 23mm

    Approximate % involvement of surface area by tumour 25%

    Vascular invasion; Not seen

    PT3a (EPE)

    PNX

    PMX

    Comments;

    At the site of
    circumferential margin involvement there is a partly detached strip of fibromuscular tissue possibly denuded capsule. Hence there is a suspicion that the inked margin is not a true surgical margin.



    All the best DJBUK

    Path report
    Djbuk:
    This report is a reliable facsimile of what you were told and reported earlier. It is a thorough and professional report. The margins at Apex and circumferential are uncertain due to the nature of the specimen provided. True negative (clear) margins were not achieved but true positive margins were also not certain. Nodes not provided for examination though unlikely to be positive with the results of the report. That is the factual issue presented.
    My opinion is that the surgical excision technique was not as accomplished as possible. If your healing continues apace and functions are recovered, then this becomes essentially without meaning.
    The pathologist must make his opinion based on the visual examination which sometimes is unclear. He (she) notes this in the report. This leaves some qualification to the findings, again, as noted. He cannot say pT3-"ish". He must make a judgment.
    I would have liked to know the percentage of G3 and G4.
    I assess this report as predicting an undetectable level of psa on your first post surgical test.
  • djbuk
    djbuk Member Posts: 24 Member
    #16
    tarhoosier said:

    Path report
    Djbuk:
    This report is a reliable facsimile of what you were told and reported earlier. It is a thorough and professional report. The margins at Apex and circumferential are uncertain due to the nature of the specimen provided. True negative (clear) margins were not achieved but true positive margins were also not certain. Nodes not provided for examination though unlikely to be positive with the results of the report. That is the factual issue presented.
    My opinion is that the surgical excision technique was not as accomplished as possible. If your healing continues apace and functions are recovered, then this becomes essentially without meaning.
    The pathologist must make his opinion based on the visual examination which sometimes is unclear. He (she) notes this in the report. This leaves some qualification to the findings, again, as noted. He cannot say pT3-"ish". He must make a judgment.
    I would have liked to know the percentage of G3 and G4.
    I assess this report as predicting an undetectable level of psa on your first post surgical test.

    Tarhoosier,
    Thankyou for your opinion. It reads as though you are a consultant.

    Psa <1 post surgey. Had another psa yesterday and that was the same. The nurse telephoned today and asked if I wanted her to arrange a meeting with the pathologist. She also offered to arrange a second opinion with a different pathologist at a major cancer centre in London.
    This at no cost to me. I've told her that I will let her know in a couple of weeks.

    Now that you have seen the report - and I have noted your comments (mine would be about the same) do you think it worth my while seeking further clarification

    djbuk
  • tarhoosier
    tarhoosier Member Posts: 195 Member
    #17
    djbuk said:

    Tarhoosier,
    Thankyou for your opinion. It reads as though you are a consultant.

    Psa <1 post surgey. Had another psa yesterday and that was the same. The nurse telephoned today and asked if I wanted her to arrange a meeting with the pathologist. She also offered to arrange a second opinion with a different pathologist at a major cancer centre in London.
    This at no cost to me. I've told her that I will let her know in a couple of weeks.

    Now that you have seen the report - and I have noted your comments (mine would be about the same) do you think it worth my while seeking further clarification

    djbuk</p>

    Second opinion?
    Djbuk:
    In my amateur opinion, another pathology review would be of limited usefulness. It would have no effect on your diagnosis, treatment or follow-on care. Those have all been completed or in process. I see nothing that another pathologist could say that would change the course of your future options.
    I encourage others here to offer their opinion.
    It is true that some men with positive margins never progress, particularly true of those with G3, because the blood supplies in their micro-environment have been destroyed thus cutting them from the living tumor. You may well be in this situation with the notes about your margin status.
    I think your next step is to rest, heal, and concentrate on regaining all functions. The glory of our disease is that psa will tell the tale. As difficult as it may be to consider that fact, psa is an amazing advance; for today it is our friend.
  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #18
    tarhoosier said:

    Second opinion?
    Djbuk:
    In my amateur opinion, another pathology review would be of limited usefulness. It would have no effect on your diagnosis, treatment or follow-on care. Those have all been completed or in process. I see nothing that another pathologist could say that would change the course of your future options.
    I encourage others here to offer their opinion.
    It is true that some men with positive margins never progress, particularly true of those with G3, because the blood supplies in their micro-environment have been destroyed thus cutting them from the living tumor. You may well be in this situation with the notes about your margin status.
    I think your next step is to rest, heal, and concentrate on regaining all functions. The glory of our disease is that psa will tell the tale. As difficult as it may be to consider that fact, psa is an amazing advance; for today it is our friend.

    PSA tests in the two decimal places 0.XXng/ml
    I agree with tarhoosier. However I think you should get sensitive PSA tests on the two decimal places 0.XXng/ml. The unitary assay limit is not proper to judge your real status after surgery. Usually RP success measured in PSA is for a threshold of less than 0.06 ng/ml. Recurrence is declared at levels of 0.2 which could well be represented as the results you received from your doctor.

    http://caprofile.net/3PSA.html
    http://www.ncbi.nlm.nih.gov/pubmed/12597949

    The best to you.
    VG

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