Anxiety over a recurrence in the future

Yeah, given the heterogeneity of this cancer and the plethora of treatment choices, it can lead to paralysis by analysis.

Throughout my 11 year journey I have had treatment four times.

The first, surgery. It was a curative effort. Though successful, the MSKCC nomogram - https://www.mskcc.org/nomograms/prostate "said" I had a 30% chance of recurrence. Looking on the bright side, 70% chance of it not.

Next was SRT, we did the standard of care though I had advocated for more aggressive treatment, adding the PLNs and six months ADT.

When it failed, I was not surprised. It was a defining moment for me;

I realized I would never be cured

I would never again be the minority shareholder in making decision making.

I would be aggressive in my treatment decisions.

I would not regret my decisions but learn from them.

I changed my horizon for treatment outcomes from long term, say 10-15 years to 3-5 years, would this treatment work for that time, if so, new choices brought about by medical research would be in play.

I developed decision criteria to constitute what clinical data would trigger the next treatment decision. For example, three or more consecutive PSA increases spaced three months apart. This prevents reaction to singular data events.

This has reduced the stress between treatments, I don't have to worry every lab test, every consult...

I know going into each treatment decision that initially we have a defined period and clearly defined clinical response data for coming off treatment.

Eleven years in , three on treatment, eight off.

There is statistical data about the 5, 20 and 15 year survival rates which is "positive" news unless you are one of the ones who aren't, a friend of mine passed in less than a year from diagnosis.

While the data on survival may be "positive," the data on the side effects of treatment, well, we don't discuss that do we!?

It's ok to have a degree of anxiety, my labs are Wednesday. Do I have some anxiousness about the results, yes. That is mitigated by having criteria in place about clinical data sufficient to make a treatment decision, yes.

Last thoughts, statistics are population based and historical. This is a heterogeneous disease, not homogeneous so these statistics may not apply to you!

Kevin

I had my Gleason 8 prostate out 2 years ago as of Jan. 31st (was downgraded to 7 after pathology). Non nerve sparing and lymph nodes clear. PSMA also showed no spread.

2 1/2 months later, I had my right lower lung lobe removed. Clear lymph nodes.

Every 6 months, PSA test and chest CT scan. Let's talk about anxiety!

Kevin how did your labs come out ?

Great, PSA .03 which is no change from the October and early December ones.

I meet with my oncologist on Monday, we'll probably talk about our vacations, wife and I are going to Sedona 5-12 April then Lake Tahoe 17-24 May with our daughters and one of their boyfriends.

He'll probably ask me if I want to push out the labs and consults to four months vice three.

I may, or jus stay the course.

Kevin what treatment did you do after radiation & hormone therapy ?

I've had four go rounds on treatment:
TRUS Biopsy 23 January 2014
Da Vinci Robotic Surgery 10 March 2014
Salvage Radiation Therapy - March-May 2016 39 IMRT 70.2Gya
Triplet Therapy:
Taxotere - Jan-May 2017 6 cycles
Lupron Jan 17-May 18 6x90 day injections
PLN IMRT Jul-Aug 17 25 IMRT 45 Gya
Doublet Therapy:
'SBRT Apr23 5X 8 Gya = 40 Gya
Orgovyx April 2023-April 2024

I came off treatment in April 2024.

Labs since have been "clean."

Kevin

Hang in there . Keep busy ! You can beet this . Anxiety is normal to a degree . Do you have friends or a prostate group you can talk with . Talking about how you feel is VERY important ! GP receptive to counsel sessions or ? God Bless Sir. . James on Vancouver Island , Canada !

Kevin how did you deal with the anxiety over the 11 years going through all of those treatments, or did you have any anxiety? What about any side effects from the treatments? Are you a go with the flow person ? I am trying to be positive with all of this & looking at it as curative. I have had the one treatment so far & pray to God thats all I need. I know you have had 4 treatments, so I just wonder how you handled them mentally.
You are probably tougher than me. Lol

Vancouver island Hiker, thanks for your reply. No support groups around here. So this forum is a good support for me right now.
Do you deal with anxiety over this journey & if so how did you deal with it. Thanks for your input.

Dealing with the side effects I think was just a function of understanding that there were things I could control, diet, exercise, managing stress which would mitigate but not eliminate the side effects.

There were the humorous yet effective ways, when my daughter was hone fur Christmas while I was on ADT she came home and asked why I had it set to air conditioning! I was driving with a friend to a game one November, it was cold outside, near zero, he reached to turn the heat on and I said touch that and I'll have to kill you...

Something that helped was each time I went on treatment I was a rapid responder, PSA would drop to undetectable in the first three months, a sign of a durable remission.

I was also confident in my decisions, knowing that I had made the best possible treatment choice with the assistance of my medical team. Those choices were for defined periods, not life sentences.

After surgery, I changed my outlook on treatment from trying to understand if it would work for the next 10-15 years to 3-5. Why, I knew that medical research would bring new treatment agents and imaging during that time, enabling me to do something different.

I kept myself informed, I don't like to use the term "research." It implies a scientific method. Instead I called it literature searches and reviews. Whatever, I could go toe to toe with my medical team on discussions about treatment specific to my clinical data.

I did 22 years in the Army, you learn a lot about accomplishing the assigned mission, how to do mission analysis, determine specified tasks, implied tasks, course of actions, decision making criteria...having branches and sequels to your original
plan...no plan survives contact with the enemy...

Those are some of the ways.

I've been fortunate, no financial toxicity, my insurance has never been an issue.

A work environment that gave me the flexibility i needed...when i needed it.

I've had some great members on my medical team, fired a few too.

To sum it up, attitude...

Kevin