Welcome to Stage Denial

[mababa]

Greetings, fellow warriors fighting prostate cancer. Mababa here, with a funny-sounding username that's a joining of my first name initial with the last part of the name of the city where I was born: Addis Ababa, seventy-one years and six months ago. Actually, I'm not quite in the fight yet, so I can't claim to be a warrior of any sort.

I was diagnosed with prostate adenocarcinoma in August 2023, shortly after returning from a 50th-anniversary cruise with my wife. As of November 3rd, after a biopsy, MRI, and Pet/CT Scan, the diagnosis is stage IVA prostate cancer with lesions showing up in a nearby lymph node. Great! It was a PSA score of 9.2, the result of a routine blood test in February 2023, had embarked on this exploration

Surgery has been ruled out as a treatment option because of the spread. So, various treatment options have been outlined for me including radiation, ADT, and some form of chemo. I've been learning much more by subscribing to this website and reading everyone's stories. The YouTube videos referenced by another participant have been very informative. I live not far from Seattle and was able to get a second opinion on my condition and recommended treatments from the Fred Hutch Cancer Center (SCCA). (The second opinion agreed with the first.) My original intention in consulting with SCCA was to determine whether a Proton Beam might have a less deleterious impact than a Photon Beam. In my case, the oncologist (a proton beam radiologist) said there was nothing to be gained. In fact, he recommended the Photon beam approach because the machines can simultaneously CT scan the prostate/target areas and direct the beam more accurately.

I'm able to see, by everyone's posts, there's lots to consider before starting treatments. Just getting a grip on the new vocabulary makes my head spin. As of now, I've decided nothing; hence, I'm in a state of denial. I'm in great health, take no medicines, and have no symptoms--all my body parts work fine. Do I really want to endure medical treatments that will substantially degrade my quality of life for years to come, apparently? I've postponed making any decisions until February 2024. Thank you, all of you warriors, for sharing your honest experiences in this forum.

[Brad70]

Almost exactly the same story here. I did Photon beam IMRT. Find a facility with good hardware, software, and staff (I used Mayo Clinic in Rochester, MN). They can develop very sophisticated targeting solutions for the beam delivery system. Also using Eligard and Nubeqa. PSA dropped from 30 to undetectable in a little over a month. Quality of life has not degraded much at all from the treatments. About 3 weeks of irritation after 4 weeks of radiation (20 treatments).

[mababa in reply to Brad70]

Thanks for your valuable input. I've read varying reports on the degree of irritation caused by IMRT, most seem to indicate there is long term bowel problems. Question, did you have a "gel" interface installed to mitigate tissue damage?

[Brad70 in reply to mababa]

No. My bowels were irritated for a short time. Not a problem. Surgery and installing artificial parts could be much worse.

[Schwah]

I’m not a big fan of proton beam therapy. They put in a full court press when I was considering treatments. As I did my research I learned that there’s no evidence it’s any better than standard radiation. Most of the independent thinkers here and elsewhere, believe brachytherapy to be the best combination of efficacy and minimal Side affects.

Schwah

[RealtorDude in reply to Schwah]

I’m on this path healingstrong.org/start-here . Most people on this forum don’t agree. You have choices. God bless you on your journey.

[mababa in reply to Schwah]

Thanks for the input, Schwah. I was told that because my cancer has already spread to a lymph node, Brachytherapy is not an option.

[Derf4223]

Re waiting, you need to get a handle on your PSA doubling time now. Also, get a DEXA scan as the likely treatments will deplete bone density and muscle mass. So start exercising 3-4-7 times per week, aerobics + cardio + resistance.

[mababa in reply to Derf4223]

Thanks Derf4223. Yep, exercise was emphasized by the oncologist at Fred Hutch as very important for fighting the side effects of treatments.

[Mike1971]

Hi mababa,

I’ve had those same treatments done. I agree with Derf - start exercising now, it will help managing side effects as well as help mentally.

[Richieis1]

Best advice I can give,get an exercise routine going and stick with it especially when you least feel like it.

[vintage42]

At age 81 I am Stage IV, too. I had IMRT for the prostate in 2021. Then in 2023, IMRT for a pelvic node, and to the entire pelvis. No side effects either time. The IMRT caused me no degradation of life.

But the latest PSMA scan shows recurrence in the prostate, diminishment in the pelvic node, and also a new abdominal node.

Urologist and oncologist have just now put me on ADT androgen deprivation therapy (finally), using Orgovyx. In a month they expect to add the ARSI androgen receptor signaling inhibitor Erleada, making it Doublet Therapy. I am too old to have chemo added, Taxotere, to make it Triplet Therapy.

They say any kind of prostate salvage treatment is not indicated because of spread, and risky as well. Also not worthwhile to use focal radiation on the latest node unless the meds don't work on it. So I will rely on the Doublet Therapy.

I think you might benefit from radiation to the prostate and to the node. SBRT is the latest generation of radiation compared to IMRT. And based on my experience, take as much hormone therapy as you can stand, whether just ADT, or Doublet or Triplet.

[mababa in reply to vintage42]

Thanks for your valuable input, Vintage. I get the sense that if I do nothing for the next ten years, I'll be where you are now. May I ask, do you suffer from prostate cancer (PC) in any way? It's difficult to find info online about just what the advanced, physical manifestations of PC are. Also, is the PSMA scan similar to or more advanced than the Pylarify Pet/CT scan?

I am also weighing a more aggressive Doublet Therapy, and limiting the duration of treatments. All this in an effort to actually kill the cancer while preserving a better chance of recovering from the treatments and preserving my quality of life. At 71, I may be able to handle greater toxicity from Chemo. This is where most of my research effort is focused. Not sure how successful I'll be in trying to customize my oncologist's recommended regimen.

Odd that your oncologist delayed the ADT. Mine wants me on it 2-3 months before starting IMRT on the prostate and lymph node. The same drugs are in play: Orgovyx versus Lupron, Zytiga, and others.

Good luck with your treatment. This PC business sure gets me looking at my mortality.

[vintage42 in reply to mababa]

You cannot do nothing, because your Nov 2023 PET scan shows Stage IV with spread to a node. You don't give the Gleason risk score from the Nov 2023 biopsy. If the 9.2 PSA was from the Feb 2023 blood test, it was not good then and could be much higher now. You will likely live far less than ten years if you do nothing.

No, I do not suffer from the prostate cancer or the IMRT -- neither the 20 sessions to the prostate with no spacer, or the 30 to the pelvis with emphasis on one node there. I had ED and urgency years before the cancer was diagnosed at age 78, and they are about the same now.

The side effects of radiation can be various degrees of bladder and bowel problems. The first symptom of the cancer is usually pain in bones -- the spine or ribs or hip.

A PSMA PET scan injects a radioactive agent that shows where the cancer is. My scans used Gallium-68. Pylarify is the trademark of a newer agent, piflufolastat F 18.

After prostate radiation in 2021, my oncologist gave me a choice of hormone therapy or not. I had not heard of it, and it sounded strange. He did not stress its importance, let me choose no, and noted that it was a reasonable choice at 78. He then referred me back to my urologist for further surveillance, and even he did not prescribe ADT until the second scan showed continued activity. I think delaying ADT was a big mistake and maybe why I have recurrence in the prostate.

[mababa in reply to vintage42]

Thank you for your detailed info, Vintage. ADT can be rough on the body, from what I’ve read. And it’s a temporary suppression of cancer growth because the cells have a way of working around the lack of testosterone in the blood. This can occur in as little as 5 years. Then it’s off to some kind of combo with Chemo. Maybe you were spared some of the ADT downsides early on.

My Gleason score was 7, unfavorable. The Pet/CT scan shows lesions in the 4 mm range in the P. Up to 9 mm in the LN. My brief experience on this forum has already convinced me that keeping my head in the sand is not an intelligent option. I feel the parental nudge. I’m due for a blood test tomorrow in order to establish my baseline PSA. I’ll be interested to see the change from the test in June.

As a 71 year old, I’m experiencing fairly typical constriction in the urethra and a moderate degree of ED. My urologist prescribed Tadalafil (Cialis) which works well and has the added benefit of improving flow through the urethra. The effect lasts over a week with one 20 mg dose. In fact, I’m going to try a reduced dosage for daily intake.

[vintage42 in reply to mababa]

In 2021 at age 78, my PSA before radiation reached 8. My Gleason was 3+4=7, not unfavorable, compared to a 4+3.

One year after prostate radiation my PSA dropped to a nadir of 1. The second year it rose back to 5, and my first PSMA scan showed 1 cm recurrence in the prostate, and 7 mm in a node. A second scan 9 months later showed a huge increase to 3.2 cm in the prostate, a reduced 3 mm in the first node after its radiation, but 6 mm in a new second node way up in the abdomen.

I know many people have unpleasant side effects from Lupron injections, but I have been taking Orgovyx pills now for almost 2 weeks, and do not feel anything different.

As you say, ADT works for about 4-5 castrate-sensitive years, and then causes the cells to become castrate-resistant, for which there are other drugs.

I also now know that ADT should be used before and after radiation. And I think that delay of ADT spared me little, but has allowed recurrence in my prostate and spread to a pelvic node and up to an abdominal node.

[mababa in reply to vintage42]

Sorry to hear about the spread of PC. We only know what that really means when it happens to each of us in the fight. I’d be interested to hear future reports on how you feel taking the Orgovyx. I’ve also been given that as an option to Lupron. I won’t be starting ADT until mid Feb. (My Gleason was 4+3 unfavorable. )

[vintage42 in reply to mababa]

Lupron has been used a long time, is an injection in a doctor's office and costs about $2,000 a month. Orgoxyx became available a couple of years ago, is a daily pill and costs about $2,700 a month. My understanding is that they both have similar side effects but Orgovyx is milder and better tolerated. And if the therapy is intermittent, testosterone rebounds quickly after Orgovyx but takes months after Lupron. At almost 2 weeks on Orgovyx, I don't think I am feeling anything from it.

[vintage42 in reply to mababa]

I have difficulty visualizing tumor sizes in metric dimensions, and found this page: ncbi.nlm.nih.gov/books/NBK6...

[NecessarilySo]

You should read my bio especially regarding lycopene, which is known to help.

[mababa in reply to NecessarilySo]

Thanks, I will.

[NecessarilySo in reply to mababa]

easyhealthoptions.com/12-na...

[mababa in reply to NecessarilySo]

Okay. After reading your bio, you've answered my questions regarding the possible physical manifestations of PC. That's quite a journey you're taking with this problem we share. Thanks for sharing, and my best wishes in your fight against it.

[j-o-h-n]

Greetings mababa....

Young male twins with big lips are sitting in their bedroom on a very hot night. One says to other "say the word mababa ten times fast" He does and then says to his twin "okay now it's your turn to fan me"...

Note: I wish to offer my apologies if I offended anyone regarding my so-called humor about "race" or "misogyny". To me, humor is boundless and since we entered this word crying, I thought it would be a good idea to exit laughing.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 12/20/2023 4:24 PM EST

[j-o-h-n]

Quoting you:

I'm in great health, take no medicines, and have no symptoms--all my body parts work fine. Do I really want to endure medical treatments that will substantially degrade my quality of life for years to come, apparently?

Sounds like me when I was 64 in 2002. So I had the old fashioned RPD in 2002 and have been fighting the tinny M.Fers. for almost 22 years. If I had to do it all over again, I would, because who knows if I would still be here at 87 years old posting silly humor. So my feeble advice is for you to stick around for at least another16 years.

Note: Blue Sapphire is the Anniversary Gifts for a 65th Wedding Anniversary.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 12/20/2023 5:55 PM EST

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

John, thanks for the advice and humor. I’m slowly realizing I’ll have to take the bull by the horns and ride this thing out to its conclusion. I’m beyond the RPD option but I know alternative treatments can buy me at least the 16 years noted. BTW, “tinny M.Fers?”

[msnik in reply to mababa]

Hello mababa,

I laughed out loud when I read your question about "tinny M.Fers?" I am guessing that tinny is a typo and it was supposed to be "tiny."

As to "M. Fers"....I had never seen this notation for it before but as someone with a very bad cursing habit....I am fairly certain it is referring to cancer cells......so, think of 2 two syllable words that can't be printed in the newspaper.....

Good luck.

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

Thank you msnik,

I was trying to avoid scaring away a new member with my usual descriptive word meant for c cells (below).

(m****o++++t****h++++e****r++++f****u++++c****k++++e****r)

Happy Christmas to you and everyone with you....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 12/21/2023 11:25 AM EST

[mababa in reply to msnik]

Got it! I appreciate the slang because that’s exactly how I feel about them.

[Nigel2023]

Hello Mababa, I have been dealing with prostate cancer for 20 years. Now has metastasized to my bones. Highly recommend 2nd opinion on whatever your oncologist recommends. I currently have engaged 3 oncologists: Fred Hutch - Seattle, Prostate Oncology Specialists - Marina Del Ray CA, and a top oncologist at Mayo Clinic - Rochester, MN.

I found Lupron in combination with Abiraterone very effective as an ADT component of treatment. You could try this first and then move to the other two options as needed, described below.

One course of action you could take is to get a PSMA PET scan (this is the latest scan used by top oncologists). Once exact locations of your PCa are known, you can consider targeted radiation such as Photon beam IMRT which is known to be highly effective in skilled hands. If your PCa is widespread, you could consider one chemo treatment and then move to a newly approved unfusion brand name Pluvicto (Lutitium 177).

With widespread metestatic PCa in my bones diagnosed 2 years ago, I progressed from a PSA of 50 down to 3.41 using ADT, 11 chemos, and 6 Pluvictos. The Pluvicto has been highly effective and you can qualify for that with a positive PSMA PET scan and only one chemo to meet FDA prerequisites.

[mababa in reply to Nigel2023]

Thanks for sharing this, Nigel. With everyone’s input I’m beginning to understand what may lay ahead as the disease progresses. Scans have been completed, so I know where the lesions are.

I’ve considered doing either the drug therapy or the radiation alone, rather than have concurrent treatments. Again, still trying to lessen impact on quality of life. May I ask about your overall quality of life after the many years of treatment?