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Pt3b after rp and first psa at 0.02 -now what?

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Posted 12/25/2013 7:15 PM (GMT 0)
Hubby had best news - first post-RRP psa was 0.02. Now comes the confusion in next steps. Surgeon says wait for upswing in psa, don't radiate on presumption of recurrence. Radiologist says radiate after waiting for 4 months to heal better but no hormones needed (Moffitt Cancer Center). Urologist says radiate with no hormones, and 2 private cancer centers say radiation and 2 years hormones. Our thoughts lean toward waiting for two consecutive increases in psa then radiation and hormones. Thoughts?
Posted 12/25/2013 8:50 PM (GMT 0)
.02 is generally considered, "zero" as in no active PC. Why radiate or do HT if you've already beaten it?

That's my thought. I am thinking your Uro has it right. Retest in a few months, if it stays stable, no more treatments are needed. If it goes up then some PC escaped surgery and you need to talk to the RO.

My other thought - go enjoy life, that is a great post surgery number.

Peace,
Andrew
Posted 12/25/2013 10:51 PM (GMT 0)
In the shop. Urologist said nothing near what you said that he said. ????? Mbock without your signature, How can we advise you. It needs to be there on every post. People forget, get posters confused. thats the purpose of the signature. Im in the camp, regardless of your signature, that you wait till you get a BCR, if ever, than go for the treatment that you choose, assuming you have a pro active Knowledge base. Beware of studies that include patients that are never going to have a BCR,. Realize , you can never know this, but trust me its a reality. Totally skews the the study and creates major over treatment. A time is coming , when future medicos will look back and will really shake there head, much as we shake our head at the medical pracices of the past. Know ones fault, just the nature of progress. but there are signs for the wise to see and avoid getting leached unnecessarily.
Posted 12/26/2013 4:05 AM (GMT 0)
Hey Mbok...after RP and biopsy (GL 4+5=0) my first post RP PSA was 4.49 and just a few weeks later was a 6....that was 4 years ago and I am only 1 example but thought you might want to see how the following 4 years played out....my best wishes/hope are sent to you.
Posted 12/26/2013 4:37 AM (GMT 0)
Mbock,

Logo is right, we need more info about your pathology and PSA history to comment.

Your radiologist and urologist want to do Adjunct Radiation Therapy, other doctors want to do the same but add Hormone therapy and your surgeon wants you to hold back and only do Salvage Radiation Therapy if the surgery proves to have been a failure.

All these options could be the best options in different situations. For example if you have a high Gleason score then doing ART or ART with HT could make sense as studies have shown that in some situations this is a good course of action. If you have a small Gleason score eg a 3+3 and focal margins on both sides it would seem sensible to wait and do SRT. And of course there is a whole lot of situations in between - ultimately it is a judgement call. Prostate cancer is not a single beast, it can be a kitten or a tiger and you do want to know the creature you are dealing with before deciding what to do next.

The best thing you can do for yourself is to educate yourself on your disease, your options and their pros and cons in your situation.

Regards,
An
Posted 12/26/2013 6:22 AM (GMT 0)
I agree with surgeons advice. Wait until proof of recurrence, before using up second and final curative tool. He may possibly ever need the radiation. I wouldn't be quick to pull the trigger with a psa of .02.

David
Posted 12/26/2013 1:02 PM (GMT 0)
Sorry - have posted before and didn't realize all stats weren't showing.
Pre-surgery psa - 3.7, neg DRE, 4 of 12 cores positive @30% involvement, 3+4. (PSA before biopsy went from 2.3 Dec 2012 to 3.7 July 2013. Father had pc.)
Post-surgery - 4+3 with tertiary 5, EXE, pos margin (gleason 3), SVI direct not distal but bilateral. Tumor 15% of gland. Multifocal. Asked surgeon about the 5 - he felt it was contained thus removed. Said one more year without intervention hubby would have gone to a 9. Am aware of studies on adjunct vs salvage benefits, RT with and w/o hormones or hormones alone. Surgeon said recurrence was 30% possibility. No scans to date pre and post-surgery. and with undetectable psa wouldn't show anyway. Have researched every website, blog, journal, articles I can find. Spoken with radiation/medical oncologists in private and public practices. Seems every discipline has their own agenda. Have conspiracy theory that surgeon needs good stats on patients to tout his success rate. Therefore the suggestion to delay additional action. Have read posts on here, UsToo, New Cancer, etc to get personal stories. So individualistic. Am a cancer (thyroid) survivor myself but this beast plays by its own rules and keeps changing the game. But our motto remains - never give up, never surrender. I thank you all for your advice and well wishes.
Posted 12/26/2013 2:52 PM (GMT 0)
mbock, you said:

"Have conspiracy theory that surgeon needs good stats on patients to tout his success rate. Therefore the suggestion to delay additional action."

The trouble with conspiracy theories, the are just that - theories. A good doctor is not going to suggest any delay for a secondary treatment that was truly needed by the patient. To make their success rate look good? Sounds like something out of a Hollywood movie.

If anything, a lot of doctors will push patients to pull the trigger for salvage radiation way too soon, not the other way around. My own oncologist has strong views on this subject, and feels that way too many men either get talked into treatment, or talk themselves into it out of needless fear.

Radiation is a serious next step. If proven to be needed, by all means. It's a lot to put the body through even on a good day. All I am saying, is to wait until there is some, any, evidence of BCR before pulling the trigger. There are other men here, with similar stats, that have never had BCR and are doing well pulling great PSA numbers, one after the next after the next.

I am the result of what happens when someone gets rushed into SRT, the SRT went terribly wrong, and what can happen. I have been left with severe radiation damage - which is worsening even 4 years later, severe chronic pain, severe fatigue, ended up with an Urostomy due to having my bladder and bladder neck being greatly burned, etc. etc.

Yes, some will say this is rare, but radiation damage to some degree happens to many men. It's serious stuff.

My point, if it's needed, then proceed cautiously. If not, enjoy the good times of having your cancer under control and pulling great PSA numbers.

I was convincingly talked into salvage radiation with a mx. PSA of .16, after 3 rises. Now I look at how bad a decision that was. On top of being left fully disabled and crippled from it, the cancer wasn't even in the prostate bed in the first place, so all that radiation and damage for nothing. I currently have a second bout of BCR with a fast rising PSA above 80.x at this time.

I do not believe that any doctor would delay treatment to you, in order for his numbers to look good. That's my honest opinion. I think he is looking out for you.

David in SC
Posted 12/26/2013 3:44 PM (GMT 0)
Today's trick of the day

If a poster has fewer than ten posts you can call up links and excerpts from everything they have ever posted by clicking on their name. I quickly found that she had answered all your questions in prior comments.

Mbock,

You ought to work on a signature summary. I can help you if you need it.

Lots of people will advise others to make treatment decisions similar to their own. I am no exception. In your husband's shoes I would be worried enough by the preponderance of Gleason type 4 cells and the tertiary type 5 that I would be receptive to the idea of adjuvant radiation to reduce the odds of a recurrence. I was Gleason 9 after surgery with positive margins so for me the decision was a no-brainer but for your husband there is, possibly, room for indecision. I think he still has enough added risk indications that further treatment seems a sensible path to take.

With my Gleason 9 my doctors weren't much interested in my post-op PSA which was very low but detectable at seven weeks. I had enough risk factors without it to justify adjuvant treatment if it had been zero.
Posted 12/26/2013 4:32 PM (GMT 0)
My point exactly Peterd, in the necessity of continuing signature. A poster will for some reason have a signature, then after all has been said, that will help him, i.e., answer all the questions we asked, somehow drops the signature. Time passes, sometime, a lot of time and poster come back on, without signature, to a whole crop of new folks with new or even same questions, more tightly honed. Now we see a lot of posts by various foks, and we do not keep notes on the details of every poster. we forget, confuse posters and have to guess, wrongly some times, the details of that particular. Solution, keep signature up, edit it, as time progress, to fit "todays" situation. For instance, biopsy results, usually, operative word usually, don't matter, after a time, and primary tx has occurred. If it does ithe signature can be edited in a way that is current but possibly omitting things NOT germane to the present. It is the posters responsibility to do this. there are many longtime posters here that post all the time about there situation, without a signature, that was once there. I suppose they feel that it is old news, but new people are here all the time, that know nothing about the that person and miss out, on info that may help them or allow the them to help the new poster. When posters come back years after treatment and post there good news of undetectable, it helps no one unless we know what the details of there situation are. A gl 6 report is a lot less encouraging, except to gl6's than a gl 9. Keep a signature for the life of your time on the forum. My reminder is not a scold and folks should realize all info and advice is Usually given in good faith, and not to make them feel bad, scared etc. Its purely advice and info, nothing more, nothing less. Personally I do not have the inclination to ameliorate, other folks, as we are all adults here even when we sometimes, act otherwise.
Posted 12/26/2013 5:33 PM (GMT 0)
Logos,

Yes, she should have a signature. But also, more experienced members should glance through a newbie's last few comments to refresh their memories about what is going on with them. It saves a step.

I hope Santa was kind to you at Christmas. As imperfect, occasionally-naughty creatures, we all need a bit of kindness from him from time to time.
Posted 12/26/2013 6:43 PM (GMT 0)
I was in the don't-add-radiation-to-the-mix-until-you-need-to camp. Still am, even though, after two years, I needed radiation. I want to do what I can to beat this disease but I don't want to suffer from the cure.

Of course, everyone has an opinion.
Posted 12/26/2013 7:33 PM (GMT 0)
Speaking only from my personal experience, I was T3B with 70% involvement of one lobe. I was able to go 7 years before my PSA rose to a level to send me to SRT. And thus far I am still reading PSA 0 as I approach 4 years after SRT. I don't assume my case is typical, but I doubt that waiting--in my case--added to my lifetime risk of dying of PCa.

Jim
Posted 12/26/2013 7:48 PM (GMT 0)

PeterDisAbelard. said...
Logos,

Yes, she should have a signature. But also, more experienced members should glance through a newbie's last few comments to refresh their memories about what is going on with them. It saves a step.

I hope Santa was kind to you at Christmas. As imperfect, occasionally-naughty creatures, we all need a bit of kindness from him from time to time.

Peter,

You are so right. It will be looking at the last 10 posts more often if a person's story is unclear.

Regards ,
An
Posted 12/26/2013 11:37 PM (GMT 0)
Jim, but what you did do, with add 7 more years of better quality of life by not jumping into SRT, as you avoided the associated risks that come with radiation, and as you said, I don't think you did anything to endanger your overall quantity of life while you waited till it was needed. I think this worked well for you, and for in line with my oncologists general advice about pulling the trigger.

David
Posted 12/27/2013 4:23 AM (GMT 0)
PeterD the last 2 sentences in your post addressed to me, was creepy on so many levels…..Stomach churning actually, the words, the setting, SantaClaus. An38 shame on you for repeating it. The first part was good advice and then…... Some times I wonder if they really know not what they do. Know what I mean…….
Posted 12/27/2013 5:11 AM (GMT 0)
Logo,

Perhaps you read it differently to me.
Peter was simply reminding us that newbies may need to be given a bit of slack and it is a kind generous time of the year (this is how I took his reference to Santa) and we are all imperfect.

I can agree with all of this completely. I had forgotten that we can look at the last 10 posts so I am happy to do that especially when someone has come in new and may not be comfortable setting up their signature.

My post was not about you, it was about me reflecting on how I can be a better poster at this site.

Hope my explanation helps.

An
Posted 12/27/2013 6:02 AM (GMT 0)

An38 said...

... it was about me reflecting on how I can be a better poster at this site.
...
An

I get it and really appreciate that kind of thinking.

Thanks for your contributions to this site.
Peace,
Andrew
Posted 12/27/2013 6:16 AM (GMT 0)
Great comment, An, and great reflection, we can all learn from that. We were all new posters ourselves at one time.

David
Posted 12/27/2013 2:48 PM (GMT 0)
My Surgeon's attitude after surgery was that we wouldn't start thinking about doing SRT until we HAD to, by which he meant PSA over 0.2 and rising.
And then when it did go over 0.2 (it went from 0.1 to 0.4) the RT doc's view was that we wouldn't do HT till we had to. by which he emant PSA rising after SRT.

So I have had SRT, but no HT as yet and have been at "less than 0.01" for a while.

I do have a query though, and it's about the decimal point. ie.
was it really 0.02 or was it actually 0.2? Becasue if it was 0.2 then I would understand why some docs were talking to him about ART.

Alf
Posted 12/27/2013 3:30 PM (GMT 0)
I think the purpose of ART is to hit the cancer early and soon after surgery to hit any remaining cancer when it is at its smallest. The purpose of SRT is to treat the cancer if it has deemed to have come back (Bio-chemical recurrence) Therefore thresholds such as 0.2 and 0.5 have meaning for SRT but not for ART. There is no trigger for ART, it is simply a stage in primary treatment.

The website
www.renalandurologynews.com/adjuvant-superior-to-salvage-radiotherapy-post-rp/article/198737/
shows the difference in outcomes between the two approaches at least from a survival point of view and these differences are not insignificant. However QOL issues are certainly a factor that needs exploring and the gains in survival stats need to be weighed against the doctors expectations on the side effects of radiation and these need to be weighed against the severity of the cancer.

Post Edited (An38) : 12/27/2013 8:33:06 AM (GMT-7)

Posted 12/27/2013 3:49 PM (GMT 0)
Logos,

Sorry if I offended you. It was far from my intention.

What I had intended was a sort of Christmas card sentiment, ostensibly about Santa Clause but with metaphors for the fallen nature of man, sin, redemption and hope. And, yes, I was gently teasing you for being irascible on the forum sometimes.

On Christmas day I was invited to a cousin's house for Christmas dinner with family. As is my habit when invited to dinner without a suggestion of what I should bring I took a bottle of wine. An uncle let me down gently and the wine went home with him and an aunt. I hadn't remembered how many recovering alcoholics there are on that side of the family. Oops.

If there is something I don't know that makes my comment unfortunate, my email works. I am sorry, if somewhat puzzled, to have offended you.
Posted 12/27/2013 4:36 PM (GMT 0)
Its cool An38 and PeterD , I see more than is there often enough, but for me, at least, I do see it. I reacted and it actually did make my stomach ache. Perhaps a "bit of undigested beef or a fragment of underdone potato". As far as apologies go, tis I, not thee. Enjoy the rest of the Holidays. PS. I still think everyone should have a signature, all the time. I see no purpose in not having one and too many reasons to have one. One ,ironically, is to save a step, perhaps 10. Couldn't resist PeterD. Consider it a friendly tap and not a polemical last word... I grow weary of my ability in that venue…….
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