False Hope?

[icanwintwice]

today I went to MDAnderson to get my results from my MRI w/wo contrast. Endorectal. Ouch. Hate that coil.

Feb 22 I had a Axumin scan that found two mets in my lymph nodes. March I had an MRI that confirmed that and maybe a met in my prostate but my RT said he thought it was scar tissue from prev radiation.

I started Lupron in May and did a PSMA scan in Aug that, AGAIN, confirmed the two mets in my lymph nodes ONLY.

I did radiation in november and december and my PSA has been undetectable for months.

So i go in there tday to see my MO and he says the radiologists says i have a met in prostate, a met on both sides of my pelvis and another in my sacrum. And that the the mets in my lymph nodes are healing.

How could these other mets grow. Me and my MO noticed in the scan that the mets on my sacrum and my pelvis were present in the previous scan done in ‘22. But were not identified as cancerous. They were also NOT identified in the PSMA scan.

Same as the one in my prostate which appears to have shrunk in size. And was also NOT identified in the original PSMA scan.

Is it false hope to think this radiologist is a moron?

My MO wants me to do another PSMA scan. I thought these scans only identified cancer that is growing?

Any thoughts on this is appreciated ….again my PSA is undetectable, and my T is down at 7.

thanks for any input….im lost.

[Tall_Allen]

What was the SUVmax of the bone metastases and the prostate tumor?

[icanwintwice in reply to Tall_Allen]

I did not get the full description of the MRI yet. It was not mentioned to me. I looked at the scan from 22 and 23 and saw small black marks that looked the same. If they are mets they arent growing.

But how could Axumin, the MRI, and the PSMA miss them previously?

[Tall_Allen in reply to icanwintwice]

SUVmax will be on your PET scans. If it is significantly greater than background, they are metastases.

[icanwintwice in reply to Tall_Allen]

I only had one Pet scan and it was the PSMA done in August. That one found the mets n my lymph nodes. And that was all…

[Tall_Allen in reply to icanwintwice]

So what did they see that makes them think there were bone metastases?

[icanwintwice in reply to Tall_Allen]

I think it was just the way they looked now which was exactly the way they looked the last time and the previous radiologists said they were nothing according to my MO. He says he thinks the radiologist is wrong so he thinks I should take a PSMA scan. Do you think that will identify which is cancer and which isnt?

[Tall_Allen in reply to icanwintwice]

“I think it was the way they looked” What is “they”? The bones on an MRI? I’m sorry I don’t understand. Perhaps you can get your doctor to explain it to you more clearly.

[icanwintwice in reply to Tall_Allen]

I apologize. Not being very clear here.

when my MO compared two different MRI scans, the mets on both sides of my pelvis looked identical. In both the first MRI and the second. The first radiologists said it was not a metastasis, another radiologist one a year later said it was. In between those scans I had a PSMA scan that also did not identify either of the two metastasis as cancer in my pelvis....the second radiologist also identified a met in my sacrum.

First, is it possible he is wrong on all of those. Either way, they are not growing.

And if they are cancerous. What are my options as I radiated the two mets in my lymph nodes....

[Tall_Allen in reply to icanwintwice]

Get a second opinion from a radiologist.

Mistake to radiate only those 2 metastases. All pelvic lymph node metastases should be irradiated.

[icanwintwice in reply to Tall_Allen]

Did full lymph node radiation on your advice. Thanks TA

[Tall_Allen in reply to icanwintwice]

Also, ask for an NaF18 PET/CT if they have it. That would be more definitive for bone metastases than another PSMA PET/CT.

[dhccpa in reply to icanwintwice]

Isn't Axumin also a PET scan? My three have all been.

[icanwintwice in reply to dhccpa]

Yes. It is. My bad in that one

[Bret5]

Take all the scans / testing that you can. My original urologist / surgeon didn’t do enough and it allowed my Gleason 10 cancer to go metastatic very quickly.

[maley2711 in reply to Bret5]

How would more scans delay the onset of metastases?

[icanwintwice in reply to maley2711]

It wouldn't but it might identify the radiologist as wrong

[Bret5 in reply to maley2711]

Let me explain. My timetable was:

- MRI guided biopsy December 2022 identified gleason 10 but no evidence of spread

- RP end of January. 12 lymph nodes and bladder neck all negative.

- No scans or PSA checks until 90 days after RP in late May. No ADT, radiation, or medications of any kind.

- PSA late May was 164, subsequent bone scan and PET scan identified numerous bone lesions.

Note, after the above happened, I moved my care from urologist / surgeon to City of Hope and I'm now on triple therapy with promising early results. My MO at City of Hope was shocked at lack of bone scans and PSA testing by my original Doctors. My point in urging testing (scans, PSA, etc.) is that PC in some cases can move very fast and if properly identified and treated early, then metastases can possibly be prevented, or perhaps caught early enough that it can be attacked at just a couple points.

I try not to dwell on the complacency and lack of actions of my original Doctors (who represented themselves as PC experts) or my lack of knowledge to challenge them, since all I can do is to take actions from present day forward.

Hope this helps explain why I urge anyone with PC or PC potential to take advantage of any scans / testing available.

[icanwintwice in reply to Bret5]

Agree on all points!

[Biobro in reply to Bret5]

Totally agree. Same thing happened to spouse. Urologist surgeon had not kept up with the latest findings and referred us to an MO who was indifferent at best. Took us a year to figure it out and find a good MO. One year lost and at least 18 months of survival. I still get angry. We were doing the second option route but everyone we spoke to said that our first guy was the best in the country. He had been 5 years previously, but was a one trick pony who was snoozing on his laurels.

[Biobro in reply to Biobro]

Opinion

[Gl448]

I’ve never heard of a prostate cancer group of cells within the prostate gland itself referred to as a “met“. Interesting.

Some aggressive cancers don’t express PSA, so it’s possible to get new mets without a high PSA. I never had PSA over 1.1 while my PCA rapidly spread throughout my pelvis and spine and most of my urinary and sex tracts.

Smarter people than me feel free to correct, but if your cancer has become castration resistant I don’t think being on Lupron will necessarily curb its growth.

Fingers crossed that your radiologist is an idiot…

[dhccpa in reply to Gl448]

I think some would argue that Lupron is still preventing many of not most PCa cells from growing or spreading, just not all, hence the spread. It's why you don't discontinue Lupron when adding something else. However, others may disagree.

[Schwah]

I’ve had two different Radioligist readings that turned out to be dead wrong. And they admitted it. I’d get the scans over to ucla or another top radiologist to get a second opinion. Make sure they have the old scans to compare them too. I’d also talk to the radiologist in person and ask him why he’s sure these are Mets when they hss as frat changes in some time.

Schwah

[cesces]

It's unlikely your radiologist is a "moron", but this stuff is hard and there is much fog of war.

Trust no one. Keep getting more second opinions until things start making more sense.

TA here is always a good source of non-physician second opinion. In my opinion he is more knowledgeable than many or most physicians. I think because in part he probably spends more time reading the literature than they do.

[tarhoosier]

Schwa and cesces are on the money here. I had a PMSA scan and the reading radiologist said there were "several" metastases, locations not identified by him(?). When I went to my oncologist to review the scan he said he looks at these quite often. He had reviewed the scan prior to my visit. He could find one spinal met and as we reviewed the scan together he noticed an anomaly on the pedical of another vertabra that he had not appreciated previously as it was so small. Uncertain of identification. He said he had no idea what the radiologist was seeing. Radiation oncologist treated both and I move on. I have the name of the reading radiologist for future reference.

Another opinion or re-read may be in order before treatment change.

[icanwintwice in reply to tarhoosier]

thanks for advice...definitely getting another opinion

[lowT163]

Sounds like we’ve been down a similar road. Did my radiation and ADT at md Anderson. They didn’t have psma yet in 2019. How low can your psa be to have a psma scan? Who is your MO and RO? I have Dr Corn for MO and my RO is Shaw. Last I heard Medicare had stopped paying for proton radiation. And yes the rectal coil is a stretcher.

[icanwintwice]

hate that coil..my radiation oncologist was Choi, and my MO is Siddiqui. What I really want to find out is who is the radiologist. Thats a good question on the PSMA scan. Was wondering what good it would do if my PSA is undetectable. The quandary for me is after my last MRI I did a PSMA scan and neither of the two identified the additional mets in my Pelvis and Sacrum. But you can see the mets in both of the MRIs. Also, if that was a met that was missed why didn't the PSMA scan I did after the MRI pick it up as it picked up the mets in my lymph nodes....

[j-o-h-n]

It's called technology...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 07/27/2023 1:38 PM DST

[dmt1121]

I went through something similar, where radiologists disagreed on what the images showed from an Axumin scan and follow up MRI in 2018. Finally, an experienced radiologist in reading scans for PCa determined that I did have a lesion on my left femur and a tumor near my bladder.

I was treated for the lesion with SBRT and went on Abiraterone immediately. These appear to have been the right decisions. I know that the lesion was there from the pain I had, which dissipated after the SBRT treatment. However, radiologists who looked at the scans where I had the SBRT decided that I did not have a lesion on my femur but arthritis!...in the middle of my femur, really!? This was told to me after the SBRT treatment.

At any rate, it through me into a tailspin of confusion about what was or wasn't true. So I have two personal observations. First, ALL the scans are relatively inaccurate and hard to read until the disease is firmly established (metastasized), PSA of .5 and higher is needed to have any chance of a somewhat accurate assessment but a PSA of 1 or higher is best.

Second is that you have to trust yourself, your test results, history and what makes sense to you for your body in these situations. There is no absolute answer, just opinions, and while the doctors are "experts", they are limited in what information they can glean from scans when your PSA is low.

From all I have read and been advised here in this forum, waiting for a PSA rise to where it can be seen on scan makes the most sense and seeing what treatments might be advisable in the meanwhile, if warranted. In my opinion, though you and your doctor knows better than I what your condition is, some of these scans seemed premature based on your PSA and may be misleading.

I hope you can find a path forward that can clearly determine, with a high level of certainty, what is really going on.

Good luck!

[Boywonder56 in reply to dmt1121]

Dont forget to pull out of that tailspin....🪂

[dmt1121 in reply to Boywonder56]

Agreed. It's been long enough that the stupidity and incompetence of the situation is now background noise. I am sure that I had the lesion and it was right to be treated. However, it also taught me that these scans are really not accurate at lower PSA levels, which means that you must wait until the fire is raging before the scan will be accurate enough to tell you "The fire is raging!" The irony is thick...