New to Group, and Recurrence - Advanced Prostate...

Advanced Prostate Cancer
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New to Group, and Recurrence

richlisad
richlisad
33 Replies

Good morning everyone. I was diagnosed in early 2018 (PSA - 4.1, 3x4=7) and had RP in August of 2018. First 2 PSA results following surgery were <0.01, and the 3rd post-op test just came back at 0.7.

I have a follow up appointment at OHSU (Oregon State hospital in Portland) in a few weeks, and I'm wondering if there are others on the West coast who have found some helpful people to see out here. Washington or Oregon would be ideal, but willing to travel if needed.

I'm also wondering what questions I should be asking at this appointment, and what specialists I should be asking to see. Thank you all for your openness to share what you know, and for the encouragement.

I'm 54, married for 33 years, with 10 kids. This is not what we had hoped for, but there you go.

Rich in Washington

33 Replies
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Tall_Allen

OSHU is a fine institution that does a lot of great research. You can go farther afield to University of Washington Seattle or UCSF, if you want to. You should be talking to a radiation oncologist, and not a medical oncologist or a urologist at this point.

The first step is to rule out distant metastases. Your insurance may or may not approve an Axumin PET scan for this purpose. Check to see if they will pre-authorize that. If not, there are other PET scans available in clinical trials or by purchase that may be worthwhile.

Here are some questions for a radiation oncologist:

pcnrv.blogspot.com/2017/12/...

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richlisad

Allen - thank you for the quick reply and for the recommendations and questions. We are between Seattle and Portland, so either is about the same to get to. UCSF isn't out of the question either.

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Tall_Allen

If your insurance won't pre-authorize Axumin, UCSF and Stanford will soon be recruiting for a free clinical trial of the DCFPyL PET scan, which is one of the best. Here are the contact details:

clinicaltrials.gov/ct2/show...

Ask Dr Iagaru at Stanford if he has any clinical trials currently recruiting that you may be eligible for - he is trying several experimental ones. UCSF also offers the Ga-68-PSMA-11 scan for purchase for $900.

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Nalakrats

Appears that Prostate Bed Radiation, is a next step. Your surgical result was excellent. Certain Scans as Allen suggested may see where the bandit is. Axumin, may pick it up, and should be mostly paid for, for those on Medicare like myself it is covered. Waiting for a clinical trial scan could take time, and the Ga-68 is out of pocket, with a history of false/positives. Getting to a RO asap, is the first step, IMO. If your pre surgery scans were clear, no mets, and no node involvement, the betting is the Prostate Bed. You are in a position to put this beast away for a long time[Remission].

Nalakrats

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richlisad
richlisad
in reply to Nalakrats

Thank you for the info. Didn't have any scans presurgery, but the thought was that we caught it early. There were positive margins, so there was some bad stuff left behind. Hoping that is all there is to deal with. Thanks again.

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Nalakrats
Nalakrats
in reply to richlisad

You did not mention the positive margins, Guess what?---it may be Time for Salvage Radiation--get a hiking to a Good RO.

Nalakrats

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Ralph1966
Ralph1966
in reply to Nalakrats

Hi Nalakrats, do RO prescribe / inject the monthly hormonal therapy that usually done together with salvage radiation? Or this should be done with combined visits to the MO? Also can RO advise or prescribe hormonal treatment without talking with MO?

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Nalakrats
Nalakrats
in reply to Ralph1966

MO's take care of the medications, and work in conjunction with an RO. I.E. In Radiation Procedures, sometimes they will discuss being on ADT for 2 Weeks prior to a procedure, and they usually decide in favor of the MO's choice. So if you do not have an MO, time to get one. We all have a team, some have more members than others. But a Team is important. And you are part of the team.

Nalakrats

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richlisad
richlisad
in reply to Nalakrats

Thanks for this. Who leads the team? Do they just work with each other, or is there someone with the primary plan?

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Nalakrats
Nalakrats
in reply to richlisad

MO usually runs the show--but as to the actual use of Radiation, they discuss for example taking certain drugs before radiation, and they will monitor blood between sessions. Many of us probably more than 90% have what I call a team.

I.E. my team consists of a Urologist, two MO's an RO, and a Geneticist

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richlisad
richlisad
in reply to Nalakrats

Very helpful. Thank you.

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AZjame

My husband's first uPSA after RP (surgery 11/20/2018) was .04. Second one 7 weeks later was .05. He was Gleason 8 with positive margins, SVI and EPE, negative lymph nodes. With his adverse pathology he wanted to an aggressive plan and pushed for radiation sooner than recommended (he is fully continent so the RO agreed). He had his first Firmagon shots today to be followed by a 6 month Eligard shot in a month. He'll start IMRT for prostate bed and prostate lymph nodes in May. While I worry about side effects he has a great attitude and says "we'll take it as it comes".

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ctarleton

If you should go to the Oregon Health Sciences University (OHSU), here's a link to the Diagnostic Radiology folks there.

ohsu.edu/xd/education/schoo...

A few years ago I consulted at OHSU and saw Dr. Tomasz M. Beer.

ohsu.edu/providers/tomasz-m...

Charles

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richlisad
richlisad
in reply to ctarleton

Thanks for the names at OHSU. I see Hilary on 4/15, and I'm trying to line up others as well.

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Hidden
Hidden

Generally the Auximen scan works best if your PSA is over at least a 2.0. Based on your results I would get another two PSA results before any new treatment. Develop a team while you are testing. Our cancer is slow so we can get more options and opinions.

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Ralph1966
Ralph1966
in reply to Hidden

Hi, but starting salvage radiation ASAP is priority after the APET scan. Salvage radiation best starting point PSA less than 0.2 but it is still not too late with PSA of 0.7

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Costarica1961

I live in oregon and get my treatment from a ohsu outlet knight cancer. These are top notch oncologists with a emphasive on prostate cancer treatment. I am currently on zytiga and predisone had rad ptostectomy plus 37 sessions radiation. Its been a long road but my psa has gone from 0.7 to 1.3 to 0.006 for the last year on zytiga going for met scan next week

I hope your experience will. Be exceptional as well.

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richlisad

Thanks. Who are you seeing at OHSU, and who all do you recommend/not recommend?

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Costarica1961

My oncology doc is Dr desai at a ohsu outlet. I met with the ohsu team prior to settling in on the facility near my house. My experience was interesting to say the least at OHSU with the lead oncologist. his name escapes me. He essentially agreed with everything i had done up to that point. He appeared to be a genius which made him very quirky and difficult for me to follow but your experience may be different i believe despite his personality he is dedicated and competent i hope this helps. I do know OHSU reputation is top notch.

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Ralph1966

Is your PSA 0.07 ng/mL or 0.7? If you wrote it right, then the oncologest will send you to Auxium PET scan, and whether they find some local spread or not, they will start salvage radiation, and the oncologest may suggest hormonal therapy for 6 months with salvage radiation to the prostate bed / possible pelvic nodes. If your PSA is 0.07 still you need to do repeated PSA every 4 weeks/month to see the progress. Do not delay any treatment, and start it ASAP.

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richlisad

PSA is 0.7 after 2 tests that were less than 0.01

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dadzone43

First, best wishes to you all.

Second, Dr Brian Lewanda posted the most up to date overview [https://integrativeoncology-essentials.com/brian-lawenda-md/] of treatment options on You Tube. Darryl has referenced the video on the Healthunlocked site.

Third, no need to rush to a decision. Happily there are many options and you can spend some time studying how well they match you and your family's needs

Fourth, the many responses show what a rich source of health this site us.

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richlisad
richlisad
in reply to dadzone43

Thanks for the link to the video. Dr Lewanda is not far from me. Do you know of anyone on here who has seen him for treatment? The video was very informative for my wife and me.

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dadzone43
dadzone43
in reply to richlisad

I only know him through the video.

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JavaMan

I believe 0.7 or .75 is when insurance normally pays for the axumin scan, though I did not have one. I had a similar diagnosis and timeline though my post-surgical psa tests have not jumped as much as yours. Best of luck!

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Zytiga1

I am not putting this forward as a cure.

This is only what the GOVERNMENT will admit to..... it may possibly do even more....

Please read....

.

cancer.gov/about-cancer/tre...

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bitittle

I had RP in 2014 with a more aggressive pathology. In 2016 PSA rose to 0.182. I chose SRT. My RO was Mack Roach at UCSF. I highly recommend. Today PSA is undetectable. If you want to talk with a urologist Peter Carroll at UCSF heads up their program and is as good as they get. Good luck but act quickly.

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richlisad
richlisad
in reply to bitittle

Thanks for the references at UCSF. Looking at them as a second opinion option.

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j-o-h-n

Greeting richlisad: Radiation - I've posted before so to those people who have already seen this please forgive me.

I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So i had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also I don't know if this would apply to you but guys here recommend "A PADDLE" to be inserted for protection of parts of your body. Make sure you ask your R.O. about the paddle and make sure you ask here on this forum before getting fried.

Good Luck, Good Health and Good Humor.

J-o-h-n Sunday 03/24/2019 1:47 AM DST

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richlisad
richlisad
in reply to j-o-h-n

Thank you, John. We've been wondering what the treatment would look like. Will ask about the paddle. Seems like my summer will be spent getting this done.

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Bethpage
Bethpage
in reply to richlisad

Richlisad, I hope that someone comes back and answers your last question because it's one we have as well. We've been told for at least a couple of years that SpaceOAR and the paddle are for patients who have not had a prostatectomy. SpaceOAR has told me that there are ROs using the product "off label," (on patients who have had a prostatectomy), but danged if I've been able to find one. Our situation is very similar to yours. Starting radiation at the beginning of May. Good luck to you!

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tallguy2

With a current PSA of 0.7 you now have joined the "recurrence club." You'll want to be tracking the velocity of the increases. But as others have mentioned salvage radiation therapy is an option (one that I did). You need to try to get that PET scan because if you have mets outside the pelvic area you'll want to consider other therapies.

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richlisad
richlisad
in reply to tallguy2

Thank you. Headed down that path. Appreciate the care of everyone here.

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