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Who's had contained cancer but microscopic spread to lymph nodes?

Posted , 5 users are following.

dave08450
dave08450

I know there's a SLIM chance of microscopic spread to the local lymph nodes that MRI cannot pick up. I'm just wondering who has had this?  I had robotic surgery 5 weeks ago, and 'live' pathology showed negative margins, all contained, nerves spared etc. Lymph nodes also removed just in case. I await pathology on those. Gleason 3+4, stage T2a, and clear MRI scans for nodes/bones. Thanks!

1 like, 21 replies

21 Replies

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  • mosski
    mosski dave08450

    Posted

    I suggest you accentuate the positive.  Everything you mention is great news! My story is very similar to yours.  My prostate was remove in December with negative margins, etc.  I will have my PSA tested at regular intervals and I am aware that the cancer could return, but until then I approach every day as though the prostate cancer never was.
  • ken47739
    ken47739 dave08450

    Posted

    Hi Dave

    Following a radical prostatectomy in Dec 2010, my PSA started to rise and I had radiotherapy to the Lymph nodes in Dec 2011with 2 years of Zoladex implants.  Really happy to report that PSA has been undetectable since then.

  • stewarta
    stewarta dave08450

    Posted

    Dave: That's a very good outcome. Mine is similar. Robot-assisted prostatectomy in March this year. Post-op path tests showed no spread to lymph nodes. First PSA results came in yesterday with <0.01 (not measurable).

    i too have the nerve bundle mostly intact, and no incontinence. i hope you are as happy as i am. 😊 (not="" measurable).="" i="" too="" have="" the="" nerve="" bundle="" mostly="" intact,="" and="" no="" incontinence.="" i="" hope="" you="" are="" as="" happy="" as="" i="" am.="">

    i too have the nerve bundle mostly intact, and no incontinence. i hope you are as happy as i am. 😊>

    • barney34567
      barney34567 stewarta

      Posted

      You say you had no incontinence. That is good news. What about impotence? May I ask what was your Gleason score before surgery? Why did you choose surgery and not a different therapy? I ask as I have to make a decision soon.
    • dave08450
      dave08450 barney34567

      Posted

      Hi Barney. I replied to myself instead of you but it's up there!!
    • stewarta
      stewarta barney34567

      Posted

      I didn't say I had no incontinence. I stated I do not have incontinence, i.e., it improved in 3 months post-op.

      This is the path I took:

      Pre-op 3T MRI for PAE (PI-RADS 4) >> MRI Guided biopsy (Gleason 8 [4+4] >> Full body scan [clear] >> Accepted for Proton Beam Therapy in Korea (AUD70k was too expensive >> Discussed with 2 urologists+ 1 radiologist (issues around cell damage and not having prostatectomy later if PCa returns) >> Robot-assisted prostatectomy >> pathology tests showed clear lymph nodes but Gleason 9 for the prostate >> Now 3 months later PSA is effectively zero.

      Make sure you ask many questions of each professional, particulalry about what happens if you have radiation therapy and the PCa returns.

      Sexual function will return I am sure but not yet. I am 69 yo, but if I was younger and had wnated more children, I would have had my semen frozen.

      I chose LIFE over other considerations.

       

    • barney34567
      barney34567 stewarta

      Posted

      Thank you for your reply. Regarding incontinence, have you returned to the pre surgery status or is it now less worse than it was soon after surgery?

      As I read it, the biopsy showed Gleason4+4 where as the post op pathology was a Gleason 9. May I ask how much was the robotic radical prostatectomy? What made you decide against proton? Was it the cost or the fact that once you have radiation you cannot have surgery in the future if the PCa returns. Or both?

    • stewarta
      stewarta barney34567

      Posted

      I am in Australia, and my all up costs for the Robot-assisted Prostatectomy including things like AUD200 for full body Scan and AUD500 for the 3T MRI was about AUD8,500.

      Proton therapy in Seoul costs AUD53,000 and with travel and accommodation for 8 weeks costs another AUD20,000.

      It was costs that put me off, plus the fact that one cannot have a successful Prostatectomy after ANY form of radiation. That is, they seem not to be able to successfully connect the urethra to the bladder.

      Ask a professional for certainty like I did.

      .

    • barney34567
      barney34567 stewarta

      Posted

      We're you on hormone therapy as well? If so, how bad were the side effects? If the cost of proton therapy was close to radical surgery, would you have opted for proton? I agree with your views on the difficulty of surgery after any radioation.
  • dave08450
    dave08450

    Posted

    I did mention above my Gleason wad 3+4 pre surgery. Hope it's the same now. It's only 5 weeks since surgery so fully impotent as expected. On 5mg Cialis to get blood flowing again, and a pump ready for two weeks time. Not to have set but just for rehabilitation. I spent two months going to four different hospitals about all possible treatments tho surgery was always the recommended one. I nearly went for HIFU, but that's a risk as it could have travelled etc. Fewer side effects but as I'm only 56 it seemed better to try to nail it, as it seemed contained. I chose the Lister, Stevenage as Mr. A performs live pathology to see if there are positive margins. This way he was able to save both nerves. Elsewhere, one would have gone as the tumour looked to be close to the edge. It was close but live pathology showed a negative margin

    So I am hopeful, once I get the clear for the nodes. Also, if surgery fails you can still have other treatments. Hifu and radiation can make later surgery near impossible.

    • barney34567
      barney34567 dave08450

      Posted

      Thank you for your reply. The impotence you talk of, is it thought to be temporary or permanent? Does Cialis work? What about incontinence? Do you suffer that? I agree with you that having surgery first allows for radiation if needed in the future. assuming no new less destructive ( to quality of life) therapy is developed. While radioation first, does not allow for surgery in the future.
    • stewarta
      stewarta barney34567

      Posted

      Barney: If, as in my case, much of the nerve bundle is intact, and given the degree of ability to raise a woody beforehand, then it might be expected to have more normal sexual relations going forward .

      If by impotency you mean something more, then no.

    • dave08450
      dave08450 barney34567

      Posted

      Barney, im a bit lost who is replying to whom. My original topic title was asking something quite specific which no-one has been able to reply to. However to answer you, my impotence is hopefully temporary. Cialis is used to help breathe life back into the nerves and penile tissue and will help things happen later. I have had no more than the odd dribble with incontinence and only really if I sneeze or blow my nose hard. I did 12 weeks of pelvic exercise beforehand which has clearly helped.
    • barney34567
      barney34567 dave08450

      Posted

      Thanks for your answer. Is the current impotence predicted to be temporary or permanent?
    • barney34567
      barney34567 dave08450

      Posted

      Regarding your original question where you talk of MRI not picking up microscopic spread into the lymph nodes, I understand that is correct. What is worse, many PET scans which are more detailed than MRI cannot pick up the spread either.
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