New, GG7 (4+3), T2c,RRP..advice?

RLR64
RLR64 Member Posts: 23
edited March 2014 in Prostate Cancer #1
I am writing for my husband, who was diagnosed with APC in March. His PSA was 5.5 and he had 12 cores taken with his biopsy. He was diagnosed with a Gleason grade 6 cancer(3+3) ..7 out of 12 cores showing cancer. At this time (time of the biospy) the Urologist could not see or feel anything out of the ordinary.

He had a radical prostetectomy on June 7th using the Da Vinci Robotics procedure. The pathology report came back with mostly Gleason Grade 7 (4+3) with no lymphatic or perineural invasion, the bladder neck, seminal vessicle and peripheral area free of cancer, although the apical margin on the left side, was focally positive for tumor. Nodes and metatisis were "not assessed" on the pathology report. The Urologist told us at the post-surgical visit that he had a very arge tumor for a prostate tumor...2 centimeters in the left lobe. He also said the cancer was very aggressive.

He is 4 weeks out...doing well and awaiting the 6 week PSA labs to be drawn. Pathology report states the cancer was contained, but was focally positive in one margin for tumor cells (Left apical)

Should we be doing anything else at this point? My husband is 54 and his brother had PCa at 39 (is okay at 50 after RP)..but now we have discovered it is rampant in his Mother's family (Uncles, grandfather..). The Urologist said "the pathology report threw us a curve ball...the cancer was much more aggressive than we thought..) Should my husband have had lymph nodes removed and examined? Should he be having a bone scan? His left hip began to hurt right before his surgury and disappeared with surgery, but the pain is now back. The doctor says until the PSA reaches 20 or more..the cancer would not show up on a bone scan. Why then do other doctors order them at the onset of diagnosis? (His older brother has also just been diagnosed and his doctor ordered one even though he says he is in the "early stages".) Should he be started on a hormonal therapy or radiation to the prostate fossia?

He is in otherwise good health, although he is overweight. He has recently worked very hard to lose 45#. He is on Celebrex (for the last 3 years or so) for arthritis in his L knee..which has disappeared since surgery, also, mysteriously..?

Are we doing the right things? The surgeon spared both nerves and he has good functioning of his urinary system and no erectile dysfunction but my main concern is his life. I don't want to waste valuable time. What should we be doing NOW?

Thank you for this site and any advice you can give. I am an RN and can understand most of what I read about the disease and the process so please, give it to us straight! We have 5 children and the yougest is 13 we love and need this fine Christian father very much! Thank you in advance for any advice or help!

Comments

  • rogermoore
    rogermoore Member Posts: 264 Member
    #2
    Good morning RLR,

    First of all, I think your husband is extremely fortunate to have such a loving wife and family. This is very obvious in your comments and expression of concern!

    I, like your husband, had a RP (although conventional) after being diagnosed with similiar gleason scores. I was 58 at the time and have been cancer for the past 5 years. I know it is very "nerve-racking" to have to wait for that first PSA test. We have all gone through the same anxieties of the wait.

    However, until that 6 week follow-up there is nothing you can do, except pray. You should both feel very comfortable with the way your husband has responded following surgery. It sounds like he has done exceptionally well.

    I don't know if I havd given you any comfort, but please continue to keep us posted on this site of your Husbands progress.

    Best of luck and best wishes,

    Roger
  • Photon
    Photon Member Posts: 57
    #3
    Hi RLR

    As Roger says your Husband is very fortunate to have such a loving wife and family. It must be a worrying time for all of you.

    You asked for it straight so I will give it to you that way. I was very similar to your Hubbie except older 60, I also had a conventional RP which left me with morbidities that the Da Vinci minimises. However my GG was 8s and 9s in all 10 cores of my prostrate with a positive margin of the right hand side. My psa was 6.4 which was considered low for the aggressiveness of the tumour. Before the op I was given a full nuclear bone scan and a full body mri which showed no metastatic disease. However the first thing they did in the operation was to remove my lymph nodes for a pathology report. If the nodes had been positive they would have stopped the operation and given me a nother course of treatment. Your husband has not had this doen so that cannot be sure that the lymph nodes have not been infected. A mri might at this stage might not show small mets in the lymph system. A bone scan might not show mets in the bones either. Although if he has pain and it is metastic disease then an mri should show it. Get him a mri of you are worried. By the way backs are funny things and can give pain when people have prolonged stress.

    Also my advice to you is to ignore a psa reading unless it is zero. Mine never went to zero and we left it 6 months to see what it did...it never moved so I had radiotherapy and the oncologist was scathing about the Urologist and said I should have had RT immediately it was known that my psa had not gone to zero. 3D conformal RT is not a bad procedure I had little side effects, a bit of tiredness thats all. My advice if if the psa is not zero talk to an oncologist who will perform the above. Sometimes they give hormone therapy alongside the RT. I didn't have that. 2 years later I am now on hormone therapy as I have mets in the R&L external iliac nodes.

    My other advice is to not to worry and just deal with things as they come along. Also I keep my food organic where possible and don't touch diary products. The latter has been shown to have a link to hormonal cancers. I am also trying pomegranate juice because a small trial indicated it had a positive effect on PC as well as the heart.

    It has been a long note apologies for that but all the best to your husband, you and your family. Try not to worry.

    God bless
    David
  • jvancik
    jvancik Member Posts: 22
    #4
    Hi .... I had the conventinal RRP done on 5/2004 at age 56 .... my post pathological report was a gleason of 3+4, T2C, perineural invasion, focally posistive margine at the apex, vas deferens and lymph nodes negative ..... I understand that the pathology is done first to see if the disease has spread prior to continuing the surgery .... so I don't understand why your husband's surgeon did not have the lymph nodes biopsied...but my PSA did not go to zero ... and for the past 2 years it has held steady at just below .2 ... my feeling is that I am in jeopardy until I hit the 3.5 year mark as the disease can be very slow growing ... I did not get radiation as a follow up and I am at this point trusting my surgeon and the oncology department at St. Peter's hospital in Albany , NY to best direct me as to future outcomes..... otherwise I am feeling fine physically and have not experienced any of the incontinence or ED described by others ... I would question why a lymphectomy was not done in your husband's case ... best wishes ... this disease is seems to be a sleeper ... it doesn't warrant a great deal of worry until it gets out of hand ... the question is how to prevent it from getting out of hand ..... I am hoping for the best for you and your husband .... may God be with you ,,,, Jerry
  • RLR64
    RLR64 Member Posts: 23
    #5
    jvancik said:

    Hi .... I had the conventinal RRP done on 5/2004 at age 56 .... my post pathological report was a gleason of 3+4, T2C, perineural invasion, focally posistive margine at the apex, vas deferens and lymph nodes negative ..... I understand that the pathology is done first to see if the disease has spread prior to continuing the surgery .... so I don't understand why your husband's surgeon did not have the lymph nodes biopsied...but my PSA did not go to zero ... and for the past 2 years it has held steady at just below .2 ... my feeling is that I am in jeopardy until I hit the 3.5 year mark as the disease can be very slow growing ... I did not get radiation as a follow up and I am at this point trusting my surgeon and the oncology department at St. Peter's hospital in Albany , NY to best direct me as to future outcomes..... otherwise I am feeling fine physically and have not experienced any of the incontinence or ED described by others ... I would question why a lymphectomy was not done in your husband's case ... best wishes ... this disease is seems to be a sleeper ... it doesn't warrant a great deal of worry until it gets out of hand ... the question is how to prevent it from getting out of hand ..... I am hoping for the best for you and your husband .... may God be with you ,,,, Jerry

    I can't thank you enough for all your good advice and comforting words! It helps so much to talk to people who have been there. We will have the first PSA drawn on July 20th and will go in for the results on July 27th. If it is not 0.00 I am convinced we need RT and maybe hormonal, too. Not sure what the Urologist will say is acceptable but he did say at the onset it should be "0.00" so I almost hope it is obvious if he needs additional treatment. The very low, but not absoulte 0 levels are so confusing to me. I understand there are a few other places in the body (cowper's gland, etc) that PSA can be made, but that really makes it hard to know what to do! I agree that rather than waiting for it to drop I would rather go ahead with the RT...not sure my husband would feel the same way!

    I plan to ask the Urologist about the lymph nodes but I really think they were not removed because they spent the first 3 hours of his surgery repairing a very bad hernia that had "3-4 loops of intestine" caught in it and many adhesions and mesh caught up in it from a previous surgery years ago. They had the OR reserved for 4 hours and I think they just got the prostate out at this point and closed. They took 5 hours in total and I think the time element may have had something to do with the node removal not being done. He is having no hip pain again at the present so I guess I will not push for the MRI while waiting on the first PSA but will definitely keep it in mind.

    I do have a question on the dairy... What about organic dairy? My husband doesn't eat much dairy stuff at all but after the surgery he has continued to try and lose weight. He is enjoying a new yogurt called Fage from Greece that is organic for breakfast each morning with granola and honey (we do not eat sugar or white flour, processed foods etc.) Is organic considered okay where the dairy is concerned?

    I will keep you posted and once again thank you for all your advice.
  • Photon
    Photon Member Posts: 57
    #6
    RLR64 said:

    I can't thank you enough for all your good advice and comforting words! It helps so much to talk to people who have been there. We will have the first PSA drawn on July 20th and will go in for the results on July 27th. If it is not 0.00 I am convinced we need RT and maybe hormonal, too. Not sure what the Urologist will say is acceptable but he did say at the onset it should be "0.00" so I almost hope it is obvious if he needs additional treatment. The very low, but not absoulte 0 levels are so confusing to me. I understand there are a few other places in the body (cowper's gland, etc) that PSA can be made, but that really makes it hard to know what to do! I agree that rather than waiting for it to drop I would rather go ahead with the RT...not sure my husband would feel the same way!

    I plan to ask the Urologist about the lymph nodes but I really think they were not removed because they spent the first 3 hours of his surgery repairing a very bad hernia that had "3-4 loops of intestine" caught in it and many adhesions and mesh caught up in it from a previous surgery years ago. They had the OR reserved for 4 hours and I think they just got the prostate out at this point and closed. They took 5 hours in total and I think the time element may have had something to do with the node removal not being done. He is having no hip pain again at the present so I guess I will not push for the MRI while waiting on the first PSA but will definitely keep it in mind.

    I do have a question on the dairy... What about organic dairy? My husband doesn't eat much dairy stuff at all but after the surgery he has continued to try and lose weight. He is enjoying a new yogurt called Fage from Greece that is organic for breakfast each morning with granola and honey (we do not eat sugar or white flour, processed foods etc.) Is organic considered okay where the dairy is concerned?

    I will keep you posted and once again thank you for all your advice.

    Hi again

    I was the one who suggested keeping off the diary. Perhaps I go overboard but I do not touch organic diary because organic can means so many things e.g. cows, sheep etc have grazed on organic pasteurs but no mention of them not receiving hormone injections like IGF. Alternatively the animal is hormone free but grazes on non organic pasteurs. So I cut it out and take organic soya milk and yoghurts instead...not to everyones liking I know but I find it ok. I also drink soya lattes at Starbucks etc. Its worth a try.
  • RLR64
    RLR64 Member Posts: 23
    #7
    Photon said:

    Hi again

    I was the one who suggested keeping off the diary. Perhaps I go overboard but I do not touch organic diary because organic can means so many things e.g. cows, sheep etc have grazed on organic pasteurs but no mention of them not receiving hormone injections like IGF. Alternatively the animal is hormone free but grazes on non organic pasteurs. So I cut it out and take organic soya milk and yoghurts instead...not to everyones liking I know but I find it ok. I also drink soya lattes at Starbucks etc. Its worth a try.

    Well, I have searched the yogurt carton over and the words "organic" have disappeared, anyway...? I am reading about the diet and the prostate..bought two books today and I see what you are saying. Not sure if my husband will go for it yet...I think he thinks it is "over" or maybe he is still in a little shock. He ignores the whole thing most of the time right now.
  • Unknown
    Unknown
    #8
    This comment has been removed by the Moderator

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