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The Gleason 9 Crew -- Part 2, continued.

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Posted 9/29/2016 7:41 PM (GMT 0)

quincy17 said...
Hi all,
I'm a G-9 with a problem, I can't seem to find anyone with similar symptoms. Ive been on ADT with only two Casodex interventions. One for 2weeks at Dx and one at five years for 18 months, the rest of the time it's been Lupron only for 88 months now. I've been Dxed with mCRPC and I really don't know where I'm headed from here. My PSA has risen ever since (I forgot to add it above) I underwent Provenge during 9/13--10/13. My PSA was 4.7 at start of Provenge and now, 12 months later it's up to 67. I have had a CT and Bone scan every 3 months for a year now and no mets have shown up, just the elevated PSA. My MO has me enrolled in a Govt. Clinical trial but I have to have a met first. Any ideas guys? . . . . Q

Hi Quincy,
I doubt that I have anything new to add to your knowledge.
What kind of a bone scan did you have? Did you have an MRI of you liver?
I'm not trying to push the panic button, however I had Pet Choline 11 scan, CT scan, MRI. It wasn't until the MRI that a liver lesion was revealed. We don't know if it is cancerous, but I suspect since it quacks like a duck it probably is. We will find out after I finish my 6th infusion on Monday what the plan with be after re-doing the scans. A direct infusion of chemo into the lesion may be on the horizon.
Xtandi has been good to me. It has been suggested by another member too. I finally failed it after 1 1/4 years. You will probably know after 3mo. If it's working. That isn't much consultation when you must be in a hurry to find something that works quickly. This whole process is an agonizing wait an see.
As you know, you have to keep searching by scanning for the culprit of the PSA rise.
I wish you the best of treatment and keep looking.

Rick
Posted 9/29/2016 7:50 PM (GMT 0)
My last Lupron (84 day shot) was April 18 (19 months total), the last daily casodex was July 18. My T is still <9. Anyone with similarly slow T?
Posted 9/29/2016 8:33 PM (GMT 0)
The last PSA test I had was <.01 done on the 7th anniversary of my surgery on 2/9/2009. I'm grateful to still be in the zero club since my surgery. I still get anxious before the PSA test although the anxiety is much less than early on. I don't post much but I still check the forum to see how every one is doing.
Posted 9/30/2016 3:28 AM (GMT 0)
Mike2420, it's not at all unusual to have a slow recovery of testosterone after HT. Mine has come back much faster than I expected, but I've seen studies that show a very wide range of recovery rates. If I recall correctly, you're about 62 or 63, so you're young enough to have a good shot at recovery. Everybody's different, just like everything else with this crazy disease!
Posted 11/2/2016 5:33 PM (GMT 0)
It seems strange to say thank you for adding me to a group that I really really don't want to be in :-) but thank you. It is useful to read all your stories on behalf of my husband.
He has just had the following diagnosis:
PSA 6700 (!)
Gleason 9 (4+5)
T3b N1 M1
Spread to lymph nodes, spine , ribs and pelvis
Posted 11/3/2016 11:56 AM (GMT 0)
Sallyyy - this is why most of us are here. You won't find many who can really appreciate what you two are going through, but we do have a pretty decent appreciation of the challenges. That perspective is why I originally created this thread. The Gleason 9s, the high risk cases, face some unique concerns.

You're doing great, asking good questions, supporting your husband in ways he probably can't, or won't, pursue.

It's a couple's disease, to be sure. My wife and I have, oddly enough, grown far closer through all of this. I am so grateful for her support and understanding, and I'm sure your husband feels the same about you.
Posted 11/29/2016 2:42 AM (GMT 0)
Another newbee to this forum.. .sigh
I have what I think is an interesting history:

I watched my psa rise exponentially for several years and tried to find someone to consider it might be cancer with no luck until it went over the magic 4.0 when I got a referral to a urologist. He said 'maybe, let's biopsy' so I had the usual 'blind' 12 core biopsy, all of which came back benign. He said wait a year. Well, we waited a year (with psa still rising with a doubling time of about 3 years) and he suggested an MRI which I had, but it was only a 1.5T machine and no endorectal coil. Which found nothing, so the urologist said his usual come back next year. I had asked about the coverage of the biopsy he did do and he said it only covers the back of the prostate where the cancer usually is. I had a feeling it was anterior, but...
I got another urologist and got a 3T mpMRI done finally and it showed, surprise, a lesion in the anterior with a high PI-Rads rating. I had an in-bore biopsy of that lesion and it came back with a Gleason 7 (3+4), so I had to decide on a treatment.
about then I found the Inspire site where there is a good prostate cancer group, a lot of leading edge stuff.
I decided to have a Focal Laser Ablation done because of minimal collateral damage, which I had done in Sept 2015. PSA at that time was about 11. A 3 month check up found it at 4.2 and at 5 months at 3.75. However, for my 6 month checkup, it was 6.6, indicating I was in trouble. I arranged for a local 3TMRI which found nothing, but I went to the Dr (Dr. Sperling) for an MRI at his facility where he found a 'speck' near the ablated area which we biopsied (7 cores in the region of the lesion). That came back as a Gl 9 (5+4) and Gl 8 4+4 in 2 of the cores and the rest were benign normal tissue. I had these reviewed by Johns Hopkins and they downgraded the Gl 8 to a Gl 7, but the Gl 9 dictates treatment. On the MRI, the size of the lesion was about 8mm which correlates well with the biopsy sample. I had Dr. Sperling re-ablate the areas with the lesion at the end of Sept 2016 to give some breathing room while I decided how to treat it.
A Psa check at the end of Oct had the psa down to 2.7 which sounded pretty good. So the primary lesion should have been ablated and 'only' any seeded sites should be remaining. I have mostly decided on SBRT with some length of time of ADT, but I need to trade off the known morbidity of full pelvis irradiation and 24 months (or more) of ADT versus the risk of there actually have been some microscopic metastases which could be reduced by this treatment.
The primary lesion was about .25cc which is tiny to start with and should have been ablated away. I have been reading studies all over the place and essentially ALL with a Gl 9 or 10 have a significant volume involved in the tumor, so I have a difficult time justifying to myself that I need to take as massive a treatment as someone with 1/2 their prostate involved! There just doesn't seem to be any studies that look at lesion volume and Gleason numbers and relate that to node involvement (or other metas)... I did find one study, but its lowest quartile was well over 1cc and it showed much better outcomes for the patients with 'low' volume lesions.
The treatment proposed so far by a rad oncologist is 2 years of ADT and IMRT to the prostate and pelvic lymph nodes. I have had a bone scan which came up negative and lymph nodes looked ok on MRI, so there is not Obvious spread there. If he can't give me some strong arguments for doing pelvic node radiation, I am going to try to have SBRT (CyberKnife) to just my prostate and SV with a high fraction high dose (which should emulate to some extent doing seeds with a lower dose of SBRT.

Sorry about writing a book, but I do think my case is pretty atypical.

The community here looks very supportive and I have found that the experience of others is very important to understanding treatment decisions.
(I hope this post formats ok, etc and I posted this in a reasonable forum.

Terry
Posted 11/29/2016 6:02 PM (GMT 0)
Hi Terry and welcome to our club. You've certainly taken a roundabout route to get to your G9 diagnosis and to that point, yes your story is atypical. In terms of where to post your info, this thread is a roll call for those of us that fall into the high-risk category and a collection of our stories. (Many of which are positive.) To the extent that you have questions or are looking for additional guidance on your next steps, you'd probably be better served by starting your own thread.

I will weigh in with some general thoughts here: first off, the thinking is that G9 is an aggressive cancer and you want to treat it aggressively. That generally means ADT and one of more forms of radiation. I don't know enough about FLA to know if that affects your treatment options. Like many other G9s here, I've had the "triple play," which is IMRT w/brachy boost, coupled with ADT. But others have just had IMRT with ADT and I'm glad you're investigating SBRT.

Good luck to you and I hope we can be of help.
Posted 11/29/2016 6:18 PM (GMT 0)
Hello everyone. I meant to post on this Gleason 9 thread to introduce myself but now can't remember if I did in the blur if my husbands diagnosis.
We are in the UK and his diagnosis is : T3b N4 M1b Gleason 9 (4+5)
PSA 6700(!) Spread to pelvis, ribs, spine and lymph nodes.

He is receiving the three monthly Zolodex hormone injection and is on the first cycle of docetaxel.

I am obsessed with survival rates because even though I am delusional I want him to be with us as long as possible.
Posted 11/29/2016 6:21 PM (GMT 0)
Sorry !! I've just read back and realised that I had already posted. Sorry - ignore me !!
Posted 11/29/2016 10:07 PM (GMT 0)
Sallyyy, post as much as you desire. We'll never ignore you! That's why many of us stay here.
Posted 11/29/2016 11:30 PM (GMT 0)
Thank you :-)
Posted 12/1/2016 12:21 AM (GMT 0)
Michael_T
Thanks for replying. My radiologist says seeds are not possible because the prostate isn't solid enough after the FLA to keep the seeds in place as long as necessary (I suppose I could do HDR brachytherapy, tho').
I do plan on ADT for an indeterminate length of time, the biggest question in my mind is if I need radiation to the pelvic lymph nodes. I am not sure a few percentage points on some nomographs is worth the damage to my gut from the radiation. But, I haven't found any real good data on this to date (almost all from RP, but not much info to relate to gleason score and volume of tumor).

Terry
Posted 12/29/2016 3:11 PM (GMT 0)
Hey all - updating my status on this thread, and a note about the thread:

Thread update:
In the G9 Crew Roster, I've updated the list to include people's first forum entry where I could find them. I'll be adding that for anyone new added to the roster, since that seems helpful to people coming here looking for information.

My status update (posted on the forum elsewhere, also posted on my yananow.org entry):
Good news on the testosterone front; it has risen well since the end of 3 years of ADT2 in March. Bad news (maybe) on the PSA front; it has risen somewhat, too.

03/2016 - T not tested, was
05/2016 - T=139, PSA<0.1 (yay)
09/2016 - T=290, PSA=0.2 (ok)
12/2016 - T=350, PSA=0.5 (ok-ish? hmm...)

Since my primary treatment was radiation + ADT2, some PSA was expected as my testosterone recovered. Even a 0.5 is still a really good response to radiation. But this looks like it might be trending, rather than low/stable. Can't tell yet.

There's nothing else to do unless the PSA reaches a significant recurrence level, usually 2.0 above nadir (my nadir was effectively zero). But, since my case was mostly type 5 cells, notoriously making little PSA, there may be more going on than a simple PSA will indicate. For my situation, it's very likely the next treatment option will be immediate and continuous hormone therapy in some form. For my very high risk case, it's unlikely there would be any local "salvage therapy" that would make any sense (cryo, HIFU, or some such). It didn't originally, and it would be less likely now.

The PSA will be checked again in March 2017. That one will likely really have my PSA-test butterflies on the wing! My projection is 0.83 if the trend continues. It would hit 2.0 about September 2017. Or, maybe it will just stay happily at 0.5 or so. We'll just have to wait and see, and live the heck out of every day in the meantime!
Posted 12/29/2016 7:16 PM (GMT 0)
Redwing,

Thanks so much for creating and maintaining this list. Great job...

Happy Holidays.

Jerry L.
Posted 1/12/2017 6:39 PM (GMT 0)
Originally posted in general forum. Looks like I belong here also.

Recently diagnosed and joining a club nobody ever wants to join. I'm looking for good advice and it seems there's plenty to be found here.
So to start, PSA 12. DRE prostate firm. Sent for a biopsy. When I got the results, it floored me. 10 of 12 cores came back cancer. GS9 (4+5)
Perineural invasion present. I have a bone scan and ct scan scheduled for today in fact. Urologist told me I will need surgery to have prostate removed. Since In my mind, I don't want any more surgeries, I had a triple bypass done 8 years ago, I'm looking for options. I have spoken to MSK in NY and I have already sent them my biopsy and medical records. The results of the CT SCAN and bone scan will also be sent to them. They said once they receive the scan results they will contact me and start discussions on plan.
Am I covering my bases? Is there anything else I should be doing? I'm completely overwhelmed at this point. Frustrated. Pissed. You name it. My daughters don't really understand the amount of fear I have right now.
Posted 1/12/2017 7:28 PM (GMT 0)
Looks like you have the bases covered.
And personally if MSK suggests an RP, I'd do it. But I'd see about them doing it. Expertise is everything.
Posted 1/14/2017 5:32 PM (GMT 0)
Scheduled for meeting at Sloan Kettering on Wednesday with Dr. Robert C. Smith. Tried for Eastham or Scardino. Scardino is pretty well booked and Eastham's first open appointment is in mid March. I also told them I want the opinion of radiation oncologist to sort thru my options. They told me the surgeon will refer to oncology if warranted.
At this point, I really don't know how urgent it is to get this started. My urologist here told me I have to get this done soon. I guess I'll find out more when I meet with doctor at MSK on Wednesday. I'll make a determination on whether it can wait for an Eastham appointment. I also have appt. with my local uro here on Monday to go over the scan results.
Posted 1/14/2017 5:48 PM (GMT 0)
Redwing,

I'm not sure I've asked this ,if I have...then I really didn't get much response. I've been searching for info about initial low PSA +low f PSA% and how that might effect PSA response post treatment. I noted that you have the same concern from your post above.

" But, since my case was mostly type 5 cells, notoriously making little PSA, there may be more going on than a simple PSA will indicate."

What have you found?

Mark
Posted 1/15/2017 1:43 AM (GMT 0)
Artist Mark -

That's a pretty good question, but I've never seen anything about free PSA having any significance beyond the initial diagnosis. It's a factor for guys with kind of intermediate PSA, like 4-10, to suggest whether or not a biopsy should be done. It's a risk factor to support the likelihood of a positive biopsy. When I was 45, I had a PSA of 5, and very low free PSA %. Three separate biopsies 6+ months apart never found anything back then, and my PSA dropped eventually to less than 2, so we stopped pretty much all follow up.

Interestingly, the 3rd biopsy was a color doppler by Dr. Fred Lee, right here in Michigan. He found increased vascularity and some inflamed tissue, but no cancer. At age 55 , when diagnosed, my Gleason 9 case was right where Dr. Lee had found that inflamed tissue. So, it just kind of makes me scratch my head as to exactly what happened.

Once you have been diagnosed, the free PSA % number just doesn't seem to have any prognostic value. No one talks about, at least not that I've seen anyway.

For what it's worth, I'd suggest considering that issue just another interesting data point that has no effect on what you're doing today, or even any consideration in the likeliness of you having successful treatment. It's quite a mind-game though, isn't it?
Posted 2/5/2017 4:16 AM (GMT 0)
I'm new here--thanks, Redwing, for adding me to this. My summary thread is here:

Intro from a CRPC Stage 4

Looking forward to reading through and getting to know my fellow travelers on this journey.
Posted 2/16/2017 1:27 PM (GMT 0)
Any G9 guys have RP with ePLND- extended lymph node dissection? (around 20 lymph nodes +/-)

If so, how many were malignant? The high risk expert at Mayo with whom we consulted recommended ePLND and our surgeon agreed. However, he didn't speak to us at all after surgery. I acquired the surgical record and dissection appears to be only limited, not extended. Surgeon hasn't responded to short email requesting confirmation.

I fear my husband's chances may have been diminished. In fact, if the surgeon did not do as he promised (I reminded him minutes before surgery and he re-assured us) then I almost feel as if my husband was assaulted.
Posted 2/16/2017 2:29 PM (GMT 0)
It's just awful when your doc won't communicate. Perhaps he stopped when he found no PCa in the nodes he removed. I had ten removed, all negative with open RP at Johns Hopkins. My surgeon preferred open so he could feel the nodes and I guess he felt no PCa in others.
Bob
Posted 2/17/2017 5:32 AM (GMT 0)
I'd love to get some feedback from some of you experienced guys on your thoughts on radiation vs surgery.

We're pretty new to the forum. My husband was just diagnosed 2 weeks ago Gleason 9. He's only 57. I'm younger and we still have 3 kids in middle/high school and we need him around.

Bone scan and MRI came back showing no metastasis (that's the bit of good news we've gotten), but he's stage 3a due to perineural involvement. PSA only 6.4, but all 12 biopsy samples were cancerous (10 G7, 2 G9)

Research has directed us to radiation - perhaps a triple threat or at least some type of high dose radiation (either SBRT or a brachytherapy boost).

This afternoon, my husband met with the urologist (surgeon) who initially diagnosed him and this guy pushed HARD for surgery. The doc really spoke in strong terms of the negative side effects to radiation (urethral scarring, potential for later developing bladder or rectal cancer due to exposure to radiation, etc). My concern with surgery is that the side effects to that are also no good, they'd have to take at least 1 nerve bundle, and with a G9 diagnosis it seems highly likely that he'd need follow up radiation ANYWAY (and it seems awful to deal with the side effects of both surgery and radiation).

Next week we are meeting with a pretty highly acclaimed Radiation Oncologist at UCLA (Chris King), and we had been expecting that my husband would start hormone therapy on the spot (even if we haven't decided on which radiation route to go...just because 2 months of HT are typically required prior to starting radiation therapy).

I think the appointment with the surgeon rocked my husband's resolve. And honestly I think that's a good thing, because when we DO make a decision, we need to have fully vetted it. The studies I've seen point to the triple threat radiation having better survival odds and better management of SE (but there's no "risk free" option, of course).

I'd love to hear thoughts, experiences, etc. The studies I've seen point to better outcomes with a triple threat than surgery...if there's other info out there, I'd like to know.

Thanks so much
Posted 2/17/2017 10:32 AM (GMT 0)
WifeofPie - it's never going to be a clear decision. He will have to decide what spectrum of risks and side effects he can be comfortable with. Both options have pluses and minuses, as you've found. There are also passionate advocates on both sides.

My surgery option would have involved a "wide excision", without "luxury things" like nerve sparing. This, according to the uro who rather timidly offered surgery as a treatment. He was quick to recommend an RO when I asked about the possibility of radiation therapy instead. I did choose radiation and ADT, a common choice for high risk patients. I was only 55 at the time, with a lot of life ahead of me. The implications of the surgery were worrisome, in that it would be aggressive and the side effects likely significant, immediate, and permanent.

I've been very happy with my radiation results. Long term? Who knows, it's always a crap-shoot with G9.

The "triple threat" of EBRT + BT +ADT has excellent statistics. There's a small increased chance of urinary stricture from the BT portion, maybe 20%, and it depends somewhat on his present situation in that area. If he's already one with urinary problems, the BT may be of concern. If not, that combo has major support, especially from those on this forum.

I didn't have the BT portion, consciously, on the strong recommendation of my RO. But that's just me, and I make no recommendation. You've perhaps read some of the back-and-forth about that in other threads.

Still, there are those here who can chime in in support of the "triple threat". With G9, you need to throw everything at it we have. It's aggressive and unpredictable.
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