On_A_Journey's journey

On_A_Journey

Just thinking, if you multiply all your readings by a factor of 10, surely the resultant time constant would remain the same. 😉

On_A_Journey

A feature of my biochemical recurrence journey is the slow and steady increases in my PSA every three months, interspersed with periods of stability. My last test in July showed a sudden spike equating to a 37% increase in PSA in three months, but this result now appears to be an outlier.

I had another follow-up today which revealed that my PSA has decreased from 0.74 to 0.67 without treatment. Good news, but confusing as hell, lol!

Recap since this time last year:

Oct 2023 – PSA = 0.58, T 15.5 nmol/l (447 ng/dL equiv.)

Jan 2024 – PSA = 0.59, T 18.1 nmol/l (522 ng/dL equiv.)

Apr 2024 – PSA = 0.54, T 19.4 nmol/l (560 ng/dL equiv.)

Jul 2024 - PSA = 0.74, T 17.3 nmol/l (499 ng/dL equiv.)

Oct 2024 - PSA = 0.67, T 17.2 nmol/l (496 ng/dL equiv.)

These five results plugged into a nomogram indicate a doubling time of 41.4 months.

All things considered, I'm just inching along the path towards further treatment. A couple of years ago, my present PSA reading would have terrified me, but now I'm quite relaxed with it all. It might even be years until I hit the trigger point for another scan!

Old Salt

Thanks for the update; basically good news. About a year ago I wrote

I guess, we can conclude that even though we don't know where the cancer is hiding, it isn't 'multiplying' to a significant extent. A VERY good thing! I hope that that will remain the case for many more months.

VascodaGama

Hi again,

Yes, time flies. Every time I look into the calendar I find out that the next day is another Saturday.

Your update seems to equal that in terms of your PSA variations. The results are similar every time you test, you are now more relaxed but, there is an increase, so you should keep the bandit in check.

Along the years in my case I learned that the success of a treatment depends on how much assured we are when defining and aiming a target. Though we need luck on our side, blindfold therapies are like playing "Russia Rowlett".

My struggle have been to treat but maintaining the quality of life as much as possible. Doctors give preferences to their profession, followingthe guidelines of their associations. The prime goal is in treating while aiming the lesser injury to the patient.

Risks and side effects falls in the choices of the patient.

Enjoy life to the fullest ✨️ 😌

VG

On_A_Journey

Thank you, VG, and it is always nice to hear from you again.

"Risks and side effects falls in the choices of the patient." As we say here, too right! This applies to what might lay ahead for me down the track too, regarding treatment. I have prepared myself so much for that day already. Not that I'm wishing it to happen, of course, but I think that when the time comes, the doctors will be surprised by how much I already have my head around it, and how comfortable I am with the concept of what might be in store for me, side-effect wise.

On_A_Journey

Well, there goes another three months. This time, my PSA has risen slightly from 0.67 to 0.77 and my calculated doubling time is now 28.1 months. Some of my results have been erratic over the past year but it seems like I have now returned to the sort of slow and steady increases that have been common in recent years.

Of interest, this is now my highest PSA reading since my failed prostatectomy in 2015. My first post-surgery reading was 0.53 and my next was 0.75, after which it was decided to proceed with salvage radiation without ADT in early 2016. I didn't reach my nadir of 0.04 until mid 2018. I'm speculating that I will hit the PSA trigger point of 1.0, which will push me towards another PSMA PET scan, maybe by year's end. In the meantime, I remain symptom free.

Old Salt

This is not scientific by any stretch, but lately I have come across several posts (on this forum and two others that I visit) describing a very late awakening of the beast. Glad to read that you are symptom free; hoping that you will continue to live a full and happy life.

On_A_Journey

Thanks OS, I appreciate your thoughts.

Today, the day after learning my latest results, has led to some melancholy feelings. How long can I put up with knowing that something is gnawing away at me from inside without doing anything about it? It's a question often considered amongst us I guess, regardless of what stage we are at, pre or post primary treatment. I am resigned to the fact that my life is now constrained by quarterly tests and consultations, but that doesn't make things any easier. It is a burden, and it is constrictive. I can actually understand why some people turn their back on their situations completely.

But for now, I will keep up with my active surveillance. I can't help feeling though, that if at some stage in the future my oncologist says that action is required, I will blurt out "It's about bloody time!"

Marlon

One of those things you hear and read all the time, is that prostrate cancer is one of the most treatable and survivable cancers there is. What they don't say is that it is not a normal and carefree life after treatment.

I have a friend who went two years with undetectable, then it showed up again. So far I've had two undetectable, and I look at it as living 3 months at a time. One thing my doctor told me is that if I do have a detect, they have to wait for it to get big enough so they can reliably know where it is and how to target it. They don't want to start blasting away a whole area with radiation. So I too am resigned to thinking it will someday show up, and I'll have to wait, knowing its there.

Wheel

Marlon,

I had incurable non-hodgkins lymphoma 20 years ago. I had chemotherapy and initially needed ct scans every three months then annually. I would have scan anxiety or called scanxiety as each scan was due. I relapsed after 4 years treated again with frequent scans monitoring things. Finally I went to scans every three years and once four years. I continue in remission. Even now when the scan is due I enter into the scanxiety. I eventually learned to ignore it until it came time for the scan. I now have the PSA blood test anxiety. I just had my second one since surgery yesterday and still not measurable. I need to get back into my lymphoma mindset that nothing I can do between scans or blood tests but live my life. Good luck

On_A_Journey

Latest instalment.

My PSA has risen from 0.77 to 0.88 in the past three months. This result is a near-perfect linear continuation of my last. I now consider the increases to be steady rather than slow and steady though. At least, with respect to my past history.

I maintain spreadsheets and graphs to record my results, and it is easy to determine things like velocity and long-term trends etc. from them. Due to the erratic nature of my results between early 2023 and mid 2024, it just so happened that my January reading of 0.77 was bang on the trendline generated from three years of results. Today's reading was a fair bit above it, telling me that velocity is increasing. The line on the graph does look steeper. The increase might be small percentage wise, but the raw number - my reading has increased by 0.21 in six months which is unprecedented for me post-surgery/salvage radiation - is concerning. Such a number would have absolutely terrified me a couple of years ago but I'm not totally beside myself at the moment. My calculated doubling time is now 20.2 months, which is still slow I guess, but faster than what I am used to.

I expect my PSA to be around 1.0 in three months. If my velocity stabilizes or slows down a bit, I will probably hold off from getting another PSMA PET scan for one more quarter, but if it has increased and produces a PSA reading above 1.0, I'll probably order one then.

Clevelandguy

Hi,

I was just curious with your PSA under one why get tested every 3 months? If I was in your shoes to calm my curious mind I would get tested every 6 months at a minimum. Me getting tested every 3 months would drive me bonkers worrying about the fluctuations. I get nervous every yearly physical to see what my PSA is, I can’t imagine what my blood pressure would be for a every 3 month PSA test. Even if my cancer does return I would probably continue with 6-12 month tests until I get a good 3-4 increased reading trend and then do a PMSA PET scan. If negative more monitoring for another year or two, then another scan. Just my plan not to freak myself out. Glad you have stayed off of the ADT meds, from what I hear they are not pleasant to be on.

Dave 3+4

On_A_Journey

Hi Dave,

I was on annual checks between 2017 and 2020, then 6 months when my reading basically doubled (albeit from a low level, 0.06 to 0.11) in one year, and three monthly since then due to similar velocity at the time. There was mention of spacing my visits out again when my readings stabilized in 2023, but I was just as happy to keep collecting data! I don't really suffer any great anxiety from getting a simple blood test and follow-up consultation every three months. Besides, the rooms at the cancer center, located at a major regional hospital, are only a five-minute drive from home. It just means marking my calendar in advance and being available. My wife and I have never been the type of people to take six or 12-month travelling vacations, so no issue there either.

Truth be known I've actually had 'cancer' for over 12 years and it doesn't faze me at all, because I've never had any tell-tale physical symptoms. No related pain, no blood in urine, no difficulty etc.

I have known for about three years that ADT would probably be the next step for me and I have done plenty of research since then. I'm not scared of it as long as I get my way regarding choice of treatment - I know which ones don't result in the side effects that I most want to avoid.

JackWest

I took action when my PSA approached about 5 and showed a rapid increase, as confirmed by my urologist's DRE. The biopsy soon followed. Now years later, compared to some friends and more, it was the best decision to have the radiation treatment.

On_A_Journey

OK, so now my PSA has hit the magical 1.0 mark, just over 10 years after my prostatectomy and 9.5 years after Salvage Radiation which was made necessary due to the surgery's technical failure (post-surgery PSA was 0.53, then 0.75). My PSA nadir was in May 2018 when it fell to 0.04 but it has been increasing ever since. It progressed to 0.67 last October, 0.77 in January this year and 0.88 in April. A fairly linear increase over the past nine months.

I have had a few PSMA PET scans before, way too early as it turns out, as they all gave false negative results (my last one was when my PSA was 0.57). A PSA of 1.0 was always going to be the trigger point for my next scan, knowing that there is an increased chance of detecting where the cells are now. So, tomorrow I will get the paperwork and book it in. The follow-up with my oncologist will be on Aug 8th.

No big deal.

Josephg

https://csn.cancer.org/discussion/comment/1723657#Comment_1723657

Another day, another milestone (not all are positive) or inflection point on your PCa journey.

I wish you the best of outcomes on your upcoming PSMA PET scan.

Old Salt

So sorry to read that, although your data indicated that reaching the PSA=1 mark was due to happen. What is the plan be if the PSMA test reveals nothing? Wait some more or start some sort of androgen deprivation therapy? I realize I am running ahead of the data, so you can just disregard what I wrote.

Be assured that we do support you on your journey.

swl1956

https://csn.cancer.org/discussion/comment/1723657#Comment_1723657

My radiation oncologist indicated that if my Pca ever shows up again on a PSMA PET scan at one or even a small number of spots, they may be able to radiate those spots depending on location even considering I've already had prior pelvic radiation. You stated in an Aprill 11 post regarding ADT; "I'm not scared of it as long as I get my way regarding choice of treatment." I'm curious as to which ADT pharmaceuticals you would be choosing. I'm currently on Orgovyx, Zytiga, Prednisone. The side effects are bothersome, especially the hot flashes at night, but not as bad as I was thinking ADT would be. My PSA is currently undetectible. I just read that Nubeqa has recently been approved by the FDA which supposedly has a better side effect profile. I think the FDA approval will make it more likely to be covered by insurance companys. Anyhow, you're on top of this, and you have options. Not sure to wish you luck for a negative or positive PSMA PET scan

On_A_Journey

Thanks @Josephg, I still don't feel any different than before diagnosis all those years ago. I'm just going along for the ride, but I do need to steer as well.

@Old Salt, my radio-oncologist seems to favor continuing active surveillance until something is found. To me, he definitely seems to be in the camp of late ADT treatment. I flagged to him that if the result is negative, I will seek an appointment with a medical oncologist just to bring him into the team and for me to question him about the different options regarding ADT (here, my radio-oncologist can initiate ADT without input from others if I let him). My radio-oncologist understands and accepts this, and even though I haven't told him directly yet, I'm pretty sure that he gets the vibe that my highest priority is delaying progression of the cancerous cells. Come my follow-up on Aug 8th, I will make that plainly aware to him regardless of the result of the scan. Oh, by the way, the scan is booked in for Monday week, Jul 28th.

@swl1956, you are correct. If the cells are detected in a nearby node for example, they can be treated with radiation, and it might result in a permanent cure! The other two possibilities are that the scan is negative again and I will seek an appointment with a medical oncologist (see previous paragraph), or the cells have spread wildly in which case I will undergo immediate ADT.

My desired choice of ADT treatment is a bit left field. It has been over three years since it was made known to me that if and when things got serious, ADT would probably be the next step. I immediately began to do lots of research, not so much nowadays, but I still do come across research articles that make me think that modern chemical castration leaves a lot to be desired. It reinforces my belief that it is a very blunt instrument, especially regarding the side effects and the apparent unwillingness of treating doctors to negate them. Gimme a sec, I just need to climb up on my soapbox.

Okay. Back in the 'olden days' before first generation medical castration drugs, prostate cancer victims typically underwent surgical castration and/or medical treatment with estrogen. As time went on, medical castration was favored in my opinion because it (1) could be applied intermittently, giving testosterone levels a chance to return to an acceptable level once it was stopped, and (2) many men were hung up on the side effects of estrogen such as gynecomastia and other feminizing effects (this is a step further than the pure de-masculinization effects of either methods of castration), and the increased risk of cardiovascular issues. And (3) most doctors were assuming that they could therefore tap into men's sensitivities about their masculinity, even if it resulted in a far worse QOL, and get their kickbacks from big pharma.

What most people going through modern ADT don't realize is that when they are told that their side effects are being caused by their testosterone dropping to negligible levels, while true, it is not the entire truth. It is the loss of the small amount of estradiol (the most prevalent of the three estrogens) naturally found in male adult bodies, created by a process called aromatization from their testosterone, which is responsible.

I've posted this link before. Table 1 (the loss of which hormone is responsible for each side effect) and Table 2 (results of surveys demonstrating the effectiveness of treatment with E2 compared to a GnRHa, first column):

Loss of Estradiol by Androgen Deprivation in Prostate Cancer Patients Shows the Importance of Estrogens in Males | Journal of the Endocrine Society | Oxford Academic

Everyone on ADT who is suffering from hot flashes, joint pain, weight gain, osteoporosis, increased risk of heart disease/stroke/type 2 diabetes, depression and cognitive issues can pin it squarely on estrogen deficiency! These side effects can be negated by using estradiol patches, just like some menopausal women do, for exactly the same reasons. Estradiol taken trans-dermally does not result in cardiovascular issues, so that blows one of the old fears about its usage right out of the water.

I'm broad minded (maybe just weird, lol) and I do not have any of the stereotypical hangups that most men seem to have about their precious masculinity. To me, if a man has to keep proving his masculinity, it demonstrates his insecurity.

After all that, my preferred recipe would be treatment with estrogen only, or in conjunction with ADT to negate the side effects. I don't care about things like gynecomastia - most senior men have it anyway, don't you! Estrogen itself is effective in its own right as a PCa treatment so in my opinion it is a shame that it is not offered nowadays. It's why I'm keen to initiate contact with a medical oncologist - actually, I want to interview him, to ask him why the medical profession shuns its usage for prostate cancer treatment.

Old Salt

Interesting thoughts there (about your views on ADT).

Thanks!