New Poster; Advice Appreciated

eanda
eanda Member Posts: 3
edited March 2014 in Prostate Cancer #1
My H was diagnosed on 1-21-10. PSA 4.7 Gleason 3+4=7 T1c All 12 core samples were positive and on the left, all 80-100% with one sample showing perineural invasion. We thought we had done a good job on our research...until I started reading the posts here and now I wonder if we have done enough to ensure we have all the needed info. We are working with the Moores Cancer Center at the Univ of Calif San Diego. H has decided on robotic surgery and is comfortable with that decision (both the surgeon and radiologist recommended surgery) but we are sending the slides and records to Hopkins for a remote second opinion. And input on the following would be appreciated:

1. After reading many posts, it now seems like 12 positive samples are unusual and maybe we should be more prepared (at least mentally) for what we will find out at surgery? Is this increased concern warranted?

2.Our doc says it is not necessary to do any imaging or other additional tests before surgery. I am thinking it may give some additional information for a better road map at surgery..Dr. Walsh's chapter on it seems to agree with our doc...not really able to add much...did anybody get info from mri or other scans that changed the course of the surgery or treatment plan?

3. We thought a doc who has done hundreds of these surgeries was = experienced. Many of the posters are talking about their doc doing thousands. Dr. Walsh quotes something like at least 250. Are we being naive in thinking our doc is experienced?

4. Anyone out there who had perineural invasion but the nerves were spared and ultimately ED not a problem?

5. Our doc does not recommend blood banking for self transfusion in case needed. He says the robotic procedure does not usually warrant this and if needed, the donated blood is safe...anyone have issues with transfused blood ?

6. I am the type who wants to know all I can before an ordeal so I can be prepared but my H just wants to get this done and does not want to know the details. So, I have quietly done research, kept mostly quiet unless I think there is something he really needs to hear...any men out there who might have advice for a wife on how to approach this? I respect his different approach but am concerned about the depression that may accompany the realities after surgery if he is not mentally prepared.

Lots of other questions..but this is already too long, I am sure. Thanks for reading and responding....Bottom line, I am scared...for my husband, for our family and for the inevitable change in our lives to come.

Comments

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    #2
    OMG!
    You lay out a HUGE can of worms.

    First, I think you're wise to get a 2nd opinion on the biopsy. Second, despite the relatively low PSA and "intermediate" 3,4 (which could be easily be reinterpreted as a more serious 4,3) Gleason score, 12 out of 12 cores is suggestive of an advanced or aggressive cancer that needs to be treated by surgery and possibly other therapies. Third, the scope of the cancer should justify at least a CT and/or bone scan to see if and how far the cancer has expanded outside of the prostate. Fourth, a prostate surgeon with "only" a couple hundred surgeries is NOT all that experienced. Doesn't mean he can't or won't do a good job, but chances are he hasn't done enough to be fully versed in the procedure yet. Fifth, if perineural invasion (PNI) was found in the biopsy that's a clear indication of the possibility of the extension of the cancer beyond the prostate -- and suggestive of the absolute need for a CT and/or bone scan as noted above.

    Here's a quote I found regarding PNI: "Since PNI is a major mechanism of prostate cancer extension from prostatic parenchyma to periprostatic soft tissue, PNI extensive enough to be sampled on needle biopsy may signal an increased likelihood of extraprostatic extension of cancer or, ultimately, of cancer recurrence." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1476100/

    Sixth, if your husband's cancer has extended beyond the prostate -- ED is the least of his problems. If surgery is still indicated, the surgeon will have to do a radical prostatectomy and remove all of the prostate, seminal vesicles, nerves and anything else that is cancerous. However, if the cancer is too extensive, the decision may be made to treat w/radiation and/or chemotherapy rather than surgery (since removing the prostate really won't solve the problem). Or both surgery and radiation and/or chemo may be the choice instead. It all depends on how far the cancer has spread. Seventh, blood loss from robotic surgery is supposed to be minimal BUT sh*t happens and, if the scope of the cancer involves the other structures beyond the prostate, the surgery will be more complicated and blood banking certainly would be wise. BTW, bladder cancer is very aggressive (it's a pathway to the rest of the body) and anyone who has it needs IMMEDIATE treatment. Eighth, your husband is not unlike many men who just want to cut out the cancer and get on with it, but if your husband's cancer is extensive, he may not only need surgery but also radiation and/or chemo. If he's unwilling to discuss it, he's in denial and he needs your help to acknowledge the scope of the problem and deal with it. Ninth, RUN (do not walk) your records to another physician for a 2nd opinion OR fight to get better assessment and treatment from the physicians you're dealing with now. I do not know who you should go to (because I've only been researching treatments for early stage cancer) but it should be someone with BROAD experience in treating late stage cancer who's willing to do EVERYTHING (whether it's clearly indicated or not) to diagnose and treat the cancer. Doesn't seem like your current physicians are in this category and I'm sure that others here will have some good suggestions for who to contact.

    Good luck and God's speed (and BTW I'm not religious) to both you and your husband.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #3
    Hi Eanda
    There is a man Dr. Israel Barken who is a retired doctor, an expert in prostate cancer who puts on a national show each Tuesday at 6pm , pacific time for a non profit prostate forum(i forget the name of it)....actually anyone can listen in by dialing 1877-727-3301.

    Dr Barken is in San Diego, and for a contribution to this organization he will give you unbiased direction........I especially mention him because he also runs a support group, I think on Saturday mornings.....anyway contact him.

    I myself am in orange county, and go to ucla.......there is also the city of hope that does a great job.

    Tonight I attended a support group, the doc running it talked somewhat about HIFU, and saying it might be a good idea in more advanced cases, and that ucla is doing hifu on patients with more advanced disease.

    I asked him about proton versus imrt........he said that a few weeks ago loma linda came out with results that were very impressive.......I haven't seen these results but there is a poster here Trew, who knows a lot about proton beam , and will probably be able to provide this information.

    I agree with the above poster,, that there is a a good chance that the cancer may have spread beyond the prostate, and additional testing would be a very good idea,and that radical prostectemy may not do the job (you really need medical advise from an expert)-- anyway thats my opinion.....there is a endorectal mri with a spectroscopy that will stage your disease, detect nodule involvements and where, and this endorectol I believe detects involvement outside the prostate.
    Ira
  • eanda
    eanda Member Posts: 3
    #4
    hopeful and optimistic said:

    Hi Eanda
    There is a man Dr. Israel Barken who is a retired doctor, an expert in prostate cancer who puts on a national show each Tuesday at 6pm , pacific time for a non profit prostate forum(i forget the name of it)....actually anyone can listen in by dialing 1877-727-3301.

    Dr Barken is in San Diego, and for a contribution to this organization he will give you unbiased direction........I especially mention him because he also runs a support group, I think on Saturday mornings.....anyway contact him.

    I myself am in orange county, and go to ucla.......there is also the city of hope that does a great job.

    Tonight I attended a support group, the doc running it talked somewhat about HIFU, and saying it might be a good idea in more advanced cases, and that ucla is doing hifu on patients with more advanced disease.

    I asked him about proton versus imrt........he said that a few weeks ago loma linda came out with results that were very impressive.......I haven't seen these results but there is a poster here Trew, who knows a lot about proton beam , and will probably be able to provide this information.

    I agree with the above poster,, that there is a a good chance that the cancer may have spread beyond the prostate, and additional testing would be a very good idea,and that radical prostectemy may not do the job (you really need medical advise from an expert)-- anyway thats my opinion.....there is a endorectal mri with a spectroscopy that will stage your disease, detect nodule involvements and where, and this endorectol I believe detects involvement outside the prostate.
    Ira

    Thanks for the input!
    Thanks for your input. We spoke with our Doc again today and he does not consider this "advanced". He is going to order an MRI he said to gain any information pre operatively that he can but both he and Dr. Walsh say it is often not that helpful. While he agreed that 12 positive samples and PNI may indicate that the cancer may have escaped the capsule, he says you cannot tell until surgery and it does not change the surgery plan....something that seems to be backed up by many published and well recognized urologists. If they find extracapsular and/or local invasion or worse, then the other tools are still available. We are sending all of the records/slides to Johns Hopkins for a second opinion and as it turns out, this surgeon trained with Dr. Walsh at Johns Hopkins. It seems the more I research, the more confusing it gets. I don't want to err on the side of denial but don't want to panic either.......
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #5
    eanda said:

    Thanks for the input!
    Thanks for your input. We spoke with our Doc again today and he does not consider this "advanced". He is going to order an MRI he said to gain any information pre operatively that he can but both he and Dr. Walsh say it is often not that helpful. While he agreed that 12 positive samples and PNI may indicate that the cancer may have escaped the capsule, he says you cannot tell until surgery and it does not change the surgery plan....something that seems to be backed up by many published and well recognized urologists. If they find extracapsular and/or local invasion or worse, then the other tools are still available. We are sending all of the records/slides to Johns Hopkins for a second opinion and as it turns out, this surgeon trained with Dr. Walsh at Johns Hopkins. It seems the more I research, the more confusing it gets. I don't want to err on the side of denial but don't want to panic either.......

    Only certain major hospitals
    give a MRI combined with a spectroscopy which make the results more accurate. The spectroscopy is considered investigational and not medically covered...I had one at ucla last year. it cost me 900. ucsf also gives one.......I pretty sure that they have a better machine than ucla.

    I believe that the mri will show nodule involvement outside the capsule if it exists.

    Ira

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