Hi all...new to site. Question please....
58 y.o. BF had RP Dec 7th, (G 3+4 and 3+3) 4 weeks post RP PSA was 0.02 and again last week.
Dr. recommended Lupron every 3 months and zytgia 4 pills A-day plus prednisone for 1 yr. He had 1st shot, and starts 35 radiation next week for 7 weeks but is against doing zytgia. Can't persuade him...any input would be so welcome. TY!
No body here can help / advise you with such limited information!
I think there are still questions that need answering.... Did your BF have any cancer extension beyond the prostate?? Was there any lymph node or bone metastases?? Based on the radiation I am presuming that he had LN involvement.... I take it he has been on lupron and zytiga for a while....Is he being seen at a center of excellence..??
Don Pescado
1 lymph node and seminal vessel extra nodal extension too. Had 1 shot but doesn't want to take zytgia. Is the shots and Radiation enough?
Ty
I think this study shows that abiraterone with Lupron plus radiation had the better outcomes--see below:
ncbi.nlm.nih.gov/pmc/articl...
In the study, 6 months was sufficient with abiraterone plus lupron, however I advise discussing this with his RO and MO. Send them a question with the study. There may be some reasons in his history that we do not know that indicate treatment for a year is needed.
I have been on abiraterone and Lupron and it is not easy to tolerate the "brain fog", hot flashes, emotional lability that comes with these meds. However, if the administration for a year is advised at a center of excellence like Dana Farber then I would do it.
Better to suffer for a year with no recurrence then to deal with PCa for a lifetime that might be shortened. All of this is in my humble opinion... Wishing you the best on your journey. Travel well...
Don Pescado
Surgeon was from Dana-Farber Boston...had RP at Brigham and women's now back to Dana-Farber for Radiation
PC,
Below is a link to the current ASCO (American Society of Clinical Oncologist) Guideline for Initial Management of Noncastrate Advanced, Recurrent, or Metastatic Prostate Cancer. This Guideline was accepted for publication in November of 2020 and published in January of this year, so it current with relevant clinical trial results.
Since your BF had seminal vesicle involvement and the one lymph node he has locally advanced with possible/likely metastatic disease. (local = seminal vesicle & metastatic = lymph node). You didn't mention the location of the lymph node or how many were removed during the prostatectomy. The treatment proposed by Dana Farber looks to follow the protocol for "Locally Advanced" as show on the chart in Figure 1 in the Guidelines.
ascopubs.org/doi/full/10.12...
The guideline can be downloaded in PDF format here:
ascopubs.org/doi/pdf/10.120...
Read through this document carefully, as it clearly outlines the recommended treatment strategies for your situation,
Take your time and feel free to return with any questions.
Most importantly, Be sure to stay positive, safe, and well. - cujoe
PS My RALP was in 2013. PCa was non-organ confined, with extra cap involvement, and rt seminal vesicle involvement, Gleason 4+3. (Fortunately, in my case, the 5 lymph nodes removed were all negative for PCa) I did 8 weeks of adjuvant IMRT, but no ADT. At the time ADT was still being evaluated with early RT, so I did not do it. Note to your BF: If I were doing it today, I agree with the comment by npfisherman above and would follow the protocol and do what clinical results indicate will provide the best long-term results.
Great find, K9 Terror...
Solid information....
Fish
Well, I suddenly remembered doing the post on the new guidelines several week ago. I even used the flow chart diagram from it as the post picture. You will likely remember it, too, when you see it:
healthunlocked.com/fight-pr...
BTW, shouldn't you and Lady Margaret be in bed at this time of night?
I remember seeing it ...even commented on it......Lately, we have been getting ready for the tax man and that has occupied my brain for way too many hours.... Lady M and I are night owls....usually in bed around 1 am.... sleep till around 8:30 or 9 am .....
Ty for all that information!!!
They test 5 lymph nodes, 1 was positive. RO told me that during radiation he will treat all lymph nodes like they're positive. Its a lot of information.... Zoom appointments suck..... The only time I was allowed in was the initial consultation with all 3 doctors at Dana-Farber to choose the best treatment plan at the time.
RP was chosen bc the MRI showed it was contained. (untrue).
Ty again...
PC,
I also got to surgery too late to contain PCa within prostate capsule. As hard as it is at the time, that truly is water under the bridge, so it is important to focus on the present and choose the best treatment that will contain the cancer "locally". Including all the local lymph nodes in the RT plan would seem to be designed to do just that.
I got 3 years after IMRT before I had my BCR (BCR = BioChemical Recurrence - see link below for a paper evaluating definitions of BCR). Had my IMRT included the adjuvant ADT that Dana Farber is recommending for your BF, it is possible that I would have killed off the local PCa and would have remained cancer-free indefinitely. The clinical research done since my RT back in 2014 has shown defined benefit for the addition of ADT to RT. That research is cited in the ASCO Guidelines document. At your BF's relatively young age of 58, he would be well advised to be aggressive in his treatment decisions and have a very sound reason for departing from the treatment plan proposed by his docs at DF. While I am currently 73 and may well outlive both my PCa and a blood cancer, CLL, I did exactly what my cancer center surgeon and radiologist recommended.
Once again, try to stay positive as you two deal with sorting all this out. You are a first-class partner for doing the outreach here on his behalf. Always feel free to reach out with any questions or other issues when/if you need to. Many here have traveled some version of the road you two are on, and we participate at HU to share our experiences and provide support to those like you.
Stay Well & Be Well - K9 terror
* * *
Defining biochemical recurrence of prostate cancer after radical prostatectomy: a proposal for a standardized definition - J Clin Oncol - 2006 Aug 20;
PS one piece of info that would be helpful is his PSA result and Gleason score (assuming he had a needle biopsy) just prior to surgery.
B4 biopsy think psa was 5.7
4 weeks post surgery it was 0.02 and same 2 weeks ago...
Gleason score originally was thought to be 4 + 4 from biopsy
pathology found it to be 3 + 4 and 3+3.
With a pre-surgery PSA of 5.7 (mine @ pre-op was 17+) getting a 0.02 at 4 weeks would (IMO) indicate that his surgeon did a respectable job clearing out the cancer. As you may already know, there is some residual PSA in the blood after the prostate, seminal vesicles, and lymph nodes are surgically removed. That is the reason for waiting a month or more to test; i.e., to give time for the blood to clear.
The lowest reading post-surgery will establish his PSA "nadir", which will be used as the benchmark in monitoring his disease state going forward. In looking at future PSA lab results, please understand that many cancer centers (including mine) do not report PSA readings below 0.1; i.e., <0.1 = "undetectable". I had the first two post-surgery labs done at my local hospital (to avoid 2 1/3 hour drive to my cancer center). They were also double decimal and both returned 0.03 results.
If at some point PSA does start to rise, it takes three sequential increases to establish a "trend" that might suggest a treatment change or initiation of additional treatments. I like to add that it takes a fourth sequential increase to "confirm" a trend. If PSA were to start to rise again, the time it takes for it to double, refereed to as 'doubling time", is the measure of whether it is actionable. I am currently off all treatments and will consider a possible change when my PSA increases above the "undetectable" <0.1 level. In fact, my last double digit lab done last year established a new nadir for me at 0.02, so there is no reason to think that treatments will be continuous after this initial treatment period.
You have not commented on his post-surgery status for continence (or lack thereof) and/or ED. Most men have some short and/or long-term issues with one or both. As a partner to a man whose "manhood" has been challenged by the surgery and will be additionally challenged by the side effects of ADT, I encourage you to do research on these issues for PCa couples and/or seek support for any issues you might have. This first year will definitely not be life-as-normal, as some basic male sexual functions are forever changed.
Lot to consider, but just get the treatment sorted out for now. I'm assuming that his RT will start 6 mos after the surgery? If so, that is one of the benefits of starting ADT right away, as it keeps any residual cancer at bay until the RT can zap it for good.
Hang tough & Stay Well.
K9 terror
Radiation starts tomorrow. 3 months after surgery. Had 1 Lupron shot. We are being aggressive towards the cancer bc although psa is 0.02....it was found in 1 out of 5 tested lymph nodes and seminal vessel extra nodal extension too. His continence is great unless he over drinks. Doctor told him to stop taking cialis because of the Lupron shot.??
I fully agree with advancing RT to ASAP. I did same and also started my 8 weeks IMRT at 3 mos out from surgery. Several days prior to my post-surgery consultation with my surgeon, I stumbled onto the (now updated) AUA/ASTRO guideline document linked below. When I looked over the 2013 version, which was just out at the time of my surgery, I saw that there are basically four negatives that show up in a final biopsy: 1) non-organ confined, 2) extracapsular extension (usually fat tissue on the capsule), 3) seminal vesicle involvement (can be one or both sides), and 4) lymph node invasion. When I sat down with my surgeon and explained that I had reviewed the guideline and saw that I had 3 of the 4 possible negative pathological findings, I said "RT looks like a no-brainer". He responded that he "would not disagree".
As a result I requested that we start RT as soon as they would approve it. The standard waiting period at my cancer center was/is 6 months. That was/is to allow time for the hopeful recovery of continence, since RT tends to fix it at whatever level of recovery it has reached when RT begins. Unfortunately, my incontinence never recovered and even after PT and I eventually had to turn to the AUS implant to restore my continence and QOL. My first implant failed after about four years and I had replacement surgery last November. AUS #2 is performing better than #1 did, so life is good once again for this old man.
As for ED, at the time of my surgery (2013,) it was recommended that all patients go on Cialis or Viagra for at least 60 days + consider buying a mechanical penile pump - all intended to help restore the blood flow necessary for erections. I did both and with a gradual improvement fully recovered to my prior status in about a year. Not all men do and there are aids for that as well.
Here is the link to the AUA/ASTRO guideline: (I have not looked at the amendments made in 2018/19, so I can't comment on what revisions were made.)
Adjuvant and Salvage Radiotherapy after Prostatectomy: ASTRO/AUA Guideline (2013, amended 2018 & 2019)
auanet.org/guidelines/prost...
BTW, If you aren't yet up to date on the terminology, "adjuvant" is what your BF is doing (while PSA is "undetectable") and "salvage" is what you would do if you waited for the PSA to start rising. (From a patient's point of view, I told all my docs that I thought they should come up with a more benign name than salvage for that RT treatment.) Here is a short description of the two:
foxchase.org/clinical-care/...
That's about all I can add to what you should already know. When something comes up that you need clarified (from a patient's point of view, you probably should do a new post, since it is now unlikely that anyone other that you and I are reading this thread.
Try to relax and go with the flow. It all gets easier to deal with as time goes by. Most importantly, Keep Being Safe & Staying Well,
Ciao - k9 terror
Ty for all the time u spent responding to this thread. I really appreciate you help in navigating all the info....Be well.
The pleasure is all mine. It's the experience/knowledge form of paying it forward. Most everyone does it in one way or another. We are stronger together than we are apart. Glad you found the site and that we were able to help you navigate these confusing times.
Best of luck to you and your BF with the RT. Stay in touch and let us know how things are going . . . Best Regards, Captain cujoe
Incomplete sentences make it hard to follow your story.
And it seems like details are left out.
Please consider restating your questions in a more complete manner, with a more fullsome narrative, and without the use of pronouns.
Thank you
PCsucks (we all here agree with that.).
Sorry for the somewhat rude reception here. As you are new to this forum, you may not realize what sort of information the community needs to provide some insight into possible treatment avenues/protocols.
In general, the more detailed information you can provide on patient history before and after surgery, final biopsy pathology, scan results (if any), what is the source of the proposed treatment (urologist vs. oncologist, private practice vs. cancer center), etc., the more response you will get. Make sure to also give a general profile of his age and overall health status.
Hope this helps - so, give it another try and we will try to help you sort it out.
In the meantime, Stay Safe & Well - cujoe
I appreciate ur response....and yes, I was a little shocked but ignored the rude comment. Its not necessary for someone to be the "vocabulary police" when in fact, this was my 1st post ever.
Ty for ur feedback. 🙂
PC,
You might consider creating a profile of your BF's disease history and any other relevant info at your HU member homepage. Just click the "Home" button at the top of the page and it will take you to a page with a blue hyperlink "Update Profile" that will bring up another page where you can add detailed info in the "Your Story" box next to your avatar image. (I'd skip the interactive interview pop-up as it seeks data-mine info used by HU and is not relevant to your interaction with the forum.)
That way anyone can find the profile info before responding to any of your posts or replies. That also keeps you from having to repeat information, since most members look there before responding to specific questions about treatment, etc., plus it keeps you from having to repeat the same info over and over in separate posts.
Have a nice weekend & Stay Well - K9
Ty... new to learning how to navigate this site. It was recommended to me by a woman on a Facebook page.
Thanks again ...I really appreciate it.
👍
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