Does it make a difference?

[CatNinja]

Hi all--

I last posted about my partner's treatment plan, and now I have a question as to whether it would be different if he could have gotten an Axumin scan.

Here is the story. He initially was diagnosed from a PSA test of 17 in July 2018 at age 54. Repeat PSA in September of 22, biopsy Gleason 4+5=9, 9 of 12 cores positive in November 2018, RRP February 2019, 6 of 30 LN positive, SVI, positive margins. 30 days after surgery, PSA was 1.22, then 1.17 a week later, and last week (3 months post RRP) was 1.12.

Insurance denied an Axumin pet scan, and the imaging trial at Yale is on hold, so we can't get the newer pet scan. He had a CT scan of chest, abdomen and pelvis yesterday, and we're waiting for results. He is just very very frustrated at not being able to get a pet scan before he starts ADT and feels like he's going to miss vital information.

Scheduled to start firmagon next week (or possibly the week after), and Zytiga shortly after that. Then radiation (probably whole bed) in a couple of months.

I was thinking today that it probably wouldn't have made much difference in his treatment if he'd gotten the pet scan because they would still do ADT/zytiga and radiation anyway. So I think the only thing he'd be missing would be radiation to specific mets or possibly chemo.

Is that right? I can't think of anything else to get a pet scan (we couldn't afford to pay $2500) so it doesn't matter, but it's just a nagging little thought. The doctor doesn't advise waiting any longer to start ADT because he wants to hit it while it's down. Which we agree with. But every time he has any pain anywhere, he's afraid it spread to that spot. So he wants something to tell him it hasn't.

I want to be supportive and positive but also don't want to minimize a very real fear he has and end up not being supportive.

Hoping for some words of wisdom from you all.

Thanks for listening.

[Tall_Allen]

Well if it found a lot of distant mets, he could avoid prostate bed radiation.

[Hidden]

I can't see having a lot of mets with a PSA of 17. I was thinking they might have been able to see one or two mets they could specifically radiate. But that's just speculation. They can see mets with a CT on the small bones, but not really small mets.

With a PSA of 17, you might also see something with a T99 bone scan. Did they offer that?

[CatNinja in reply to Hidden]

Yes, there was nothing on the bone scan.

[Hidden]

I was just reading that whole body MRI with diffusion weighted imaging is being used to detect bone mets on several cancers. Don't know if this would be an option for you. Here's an article on it.

ncbi.nlm.nih.gov/pubmed/299...

[CatNinja in reply to Hidden]

Thanks, I will ask about it!

[Fairwind]

His PSA is low and trending downwards..I would do nothing until you see 2 or 3 consecutive monthly increases.. The scans won't make much if any difference in his future survival. Should his PSA turn around, then it's ADT and radiation which can produce a cure 50% of the time..Gleason 9 requires the most aggressive treatment, it can be an uphill fight..Don't get hung up chasing fancy scans..they might find something but they never find it all once it's out of the barn..

[tallguy2]

I think that's right. ADT is certain and radiation followed by abiraterone or chemo is likely in his future.

Best wishes!

[MichaelDD]

I can say personally that the GA68 PSMA scan IS a pretty fancy scan. Well worth it. 3 bone scans and 2 CT scans nothing for me . Last October GA68 in trial at UCSF found more than 10 metastatic nodules in my lungs. Probably a year earlier then the CT scan. I have never had a PSA over 12. At time of scan PSA was 1.99. I did pay out of pocket for mine. I hope it becomes a standard and not fancy.

[Cynthgob in reply to MichaelDD]

What did they do to the lung nodules? Any different treatment ?

[tango65]

With a PSA less than 2 the Axumin scan has a detection rate around 30%. The Ga 68 PSMA PET/CT has a detection rate around 61%.

ascopubs.org/doi/abs/10.120...

The use of Ga 68 PSMA PET/CT has a significant impact in radiotherapy planning.. Ga 68 PSMA PET/CT could lead to a change in therapeutic plan in around 50% of the patients.

ncbi.nlm.nih.gov/pmc/articl...

These new PET/CT scans are being used not only to detect if there are metastases outside the pelvis but also to plan the radiotherapy.

"PSMA-11 PET/CT had a significant impact on the management of the presented cohort of radiotherapy patients with prostate cancer. Radiotherapeutic management was changed in 50.8 %. The treatment of lymph node areas in the pelvis has already become more individualized by the use of IMRT. Radiotherapy today delivers selective pelvic lymphatic irradiation rather than standardized whole-pelvis irradiation. More sensitive and specific staging helps to exclude stage IV patients from this approach and enables individualized dose escalation to lymph node metastases or subvolumes of the prostate. The consequences in terms of changes for progression-free survival and overall survival remain to be investigated."

[CatNinja in reply to tango65]

That sounds pretty awesome. I hope it comes out of trial and becomes SoC soon!

[Bebby1]

Bloody insurance

I’d go for ADT

[Bebby1]

Sorry me again

My husband 61

Diagnosed feb 2018

Highest PSA 37

But Gleeson 10

Extensive bony Mets and lymph nodes

Couldn’t tolerate chemo

Hospitalised with neutropenia five times after two of six doses

Became resistant to cosudex

Enzalutamide holding him ( both ADT

And he feels the bone pain has improved

Albeit he is on low dose slow release morphine am and pm

All the best

Hang in there

[CatNinja in reply to Bebby1]

Thanks for the info. I'll be thinking of you both. Glad the enza. Is working for him!

[gleason9guy in reply to Bebby1]

You're in my prayers!

[Bebby1 in reply to gleason9guy]

Thank you

I have a sinking feeling that we may be on a downhill slide

[Kevinski65 in reply to Bebby1]

Sounds like me but I took Zyflamend , no morphine yet...7 years out

[pakb]

I Don't know about the auxium scan but I wonder about other timing. Usually I've seen scans and a biopsy done sooner after an elevated PSA. Did he have all other bloodwork? What are his blood numbers? Alkaline Phosphate? That can indicate bone mets. If he has metastasis, given his age, he may do chemo plus ADT. Age and mets I read is sometimes a factor in ADT plus chemo or ADT plus Zytiga. I'm just surprised they waited 2 months after elevated PSA (over 4 is elevated) to do a follow up PSA and then waited another 2 months to do a biopsy, and then did an RRP before doing scans. I've never heard of a Gleason 9 not starting ADT right away. Sounds like it has been 9 months since diagnosis but no ADT?

Given all of that... no sense really looking back- my husband was diagnosed at 49. He had a biopsy before PSA but not on purpose- biopsy (also GLeason 9) was routine on tissue after a TURP for enlarged prostate. We didnt know about cancer before TURP. He started bicalutimide asap because of just Gleason score and had chest and abdomen scans and MRI within a week. They showed mets.Bloodwork showed PSA and alkaline phosphate were very elevated. He started on lupron two weeks after all of that and chemo a month later. Now he is on lupron plus Zytiga.

If I were you I'd get him on lupron asap. Do scans asap to see if he has mets to choose Zytiga or chemo. Hit it hard since he is young. And keep reading here in this group. Awesome info and amazing support!

[CatNinja in reply to pakb]

Thanks, I don't think there have been any blood tests outside of the usual CBC and PSA. I'll ask about that next visit. There is a little confusion as to whether he's starting ADT next week at the uro follow up or the following week with the MO but definitely one of those two. So at least there's that.

[pakb in reply to CatNinja]

I would think his Alkaline phosphate would have been done in his blood work. Are you seeing a medical oncologist specializing in prostate cancer?

[CatNinja in reply to pakb]

Yes. He may have had it done, but the MO didn't mention it and I didn't know what to look for in the lab report. So you know what is called in the report? There's probably an abbreviation I don't know.

[pakb in reply to CatNinja]

Usually ALP or Alk Ph

Keep us posted!

[Break60]

Just wondering: Did the insurance company say what’s required for them to approve the axumin scan?

Bob

[CatNinja in reply to Break60]

No. The dr even wrote a letter attaching a number of charts to show it is SoC for his situation, but the insurance company disagreed.

[Break60 in reply to CatNinja]

I know Medicare pays for axumin scans if you have recurrence which they define as two successive increases in PSA.

[CatNinja in reply to Break60]

The doctor actually told us that if he was on Medicare it would be covered but private insurance hasn't yet caught up to Medicare. He was saying that if he had the option, he'd much rather be covered by Medicare since it was better than private insurance.

[Break60 in reply to CatNinja]

True

[pleinairpainter in reply to CatNinja]

Hello CatNinja, Your husband and I have similar medical diagnosis and experience with denial of the PET scan. Just over two years ago, age 58+ years, I was diagnosed with Pca, PSA 20+, Gleason 9, stage iv. Given CT (with and without contrast) scans, nuclear bone scans, and MRI, all were given before & after RP surgery in May 2017. PSA continued to rise after RP, MO requested PET scan. He was denied three times by my insurance company. The reason given was that I needed to be 62 years old. Friends offered to pay for it and that was declined. After the three denials, my MO said that we had enough information from the conventional scans with which to work and he was concerned with the continued rising PSA. End of August 2017, MO started me on casodex for two weeks and then placed me on lupron/zytiga/prednisone. 6 months later xgeva added to the mix. Similar to your husband I was frustrated with the denial for a PET scan, simply because I was four years too young. I was angry and frustrated with the insurance company for not permitting the best diagnostic tool possible to be used on me–denied on a technicality– and for wasting my MO's time. Your husband and everyone deserves the best possible diagnosis, his anger is justified. That being said, since September 2017, my PSA has dropped and, by the oncologist’s evaluation, I have maintained a PSA 0.5 for a year. In that year, there was some minor cancer activity on a small part of my T-9 vertebrae and once again I was given the “conventional” scans, (PET scan would not be of use now since I started the ADT) and my “cancer team” was able to discover where the activity was. It was zapped with Stereotactic Body Radiotherapy which, by the way, was initially denied by the insurance company. My RO noted it was the first time that he had to request approval for treatment three times from an insurance company. (One reason for the denial was the insurance company did approve conventional radiology treatment for me: Eight – ten weeks, 5 day per week. Such a conventional radiology treatment often poses problems for high-risk, aggressive Pca). One drawback with all the innovative (and successful) cancer treatments is that insurance companies are not able to keep up.

Wish you and your husband the best.

If possible, please keep us updated.

[gleason9guy]

Here's a little food for thought. He's gonna have all kind of pains all over the place. Regardless of what tests are done, they won't tell the whole story. Worrying about if a pain indicates cancer or not is just like twirling in circles at the corner of Paranoia & Panic. I wish you all the best.

[gleason9guy]

And it's for this reason that I always feel I'm being fitted for rose-colored glasses when I'm at the doctor's officer.

[j-o-h-n in reply to gleason9guy]

Best rendition:

youtube.com/watch?v=rzeLynj...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/24/2019 5:02 PM DST

[gleason9guy in reply to j-o-h-n]

Exactly. I like to think I'm prepared for the worst while expecting the best. Maybe just a little cognitive dissonance every now and then.

[Olivia007]

Hello my dad had the axnium scan 2 months ago the Doctor said it was inconclusive because it didn’t show anything new of where the disease travelled. He had a bone scan and ct scan of pelvis and abdomen 12/2016 and it said the same thing as the new axnium scan. The axnium scan showed the cancer the regular scans showed in 2016 but nothing new. To me I was grateful but going back to u I don’t think the test is so so sensitive as they claim. Hope that helps

[j-o-h-n]

"But every time he has any pain anywhere, he's afraid it spread to that spot. So he wants something to tell him it hasn't."

TELL HIM HE'S IN GOOD COMPANY...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/24/2019 5:08 PM DST

[FRTHBST]

When I experience new pains and sensations, I've been using frankincense essential oil (12 drops or so mixed with a carrier oil, using organic coconut oil because that's what I have around) massaged into the area and this helps with the sensations. While frankincense does have some in-vitro effects on cancer cells, it's not clear whether absorption through skin might have any result. It might though, and it's not associated with any side effects.

[Philly13]

Sharing experiences is what this site is about. I had RP surgery December 2017. PSA went to .58 at nadir but then started to rise and got to 1 in 30 days. . Made appointments with every Dr. I thought could offer insight. Radiation Oncologist ordered an MRI before the exam and it was negative for any obvious hot spots. I asked her for the Auximen PET scan. The insurance company turned us down first. She fought them and got them to agree to the PET scan after a while. I had 3 lesions. One at T11 and 2 in my pubic bone region. My Doctors are at Penn Med and we did avoid radiating the prostate bed as it was not necessary and still is not necessary a year and some change later. My PSA was below 2 at the time but rising fairly rapidly for a guy without a prostate.

Perhaps, you can ask your doctor to try harder to convince the insurance company. The people making decisions are often not qualified for what they are making decisions about. Or try to find a consulting oncology department that has more clout with insurance companies. My amateur opinion is the Auximen or GA68 PSMA are important diagnostic tools. I wouldn't give up fast on trying to get it authorized.

Also, the medications you are about to start are very expensive. Start researching the co-pays and some alternatives for that. I am on medicare but have gotten misinformation from the hospital specialty pharmacy. They said there was no difference between them and my Prescription Drug Plan's preferred pharmacy. I called Aetna to find out generic Zytiga is half the price at CVS. I still have to deal with the "donut hole". After the donut hole my 5% co-pay will be $220 per month instead of $460. That is a big difference.

Also, depending on your income there are many programs to help with the cost of prescriptions. In a 2 person household, it is my understanding that it is approx $82k in adjusted gross income. If you are below that you can get significant help.