Thinking of Active Surveillance with 3+4 - Prostate Cancer N...

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Thinking of Active Surveillance with 3+4

MauiJef profile image
24 Replies

Received my results on Feb 28 that I had 1 core of 3+3, not worried about that one....

But I had two cores of 3+4, 1 core the gleason pattern 4 is 10% and the other core was gleason pattern 4 of 10-20%, these reading were from the City of Hope, which confirmed the original report from my first Dr.

My last PSA was 5.4 and I'm a T1c

I'm 55, excellent shape and have no ed issues.

I've met with Dr.Lau and Dr. Dorff from City of Hope as well as Dr. Kishan from UCLA

They all have said that with my low psi and stage, they'd be ok with AS and would put me on a follow up program to monitor. I do realize that at some point I'm going to have to decide on a treatment, but the hope that I can delay it possibly a few years or more is very appealing to me.

So I was wondering has anyone else done AS with 3+4 and if so, how did it go? Any regrets?

I'm not 100% decided on what I'll do, one day I wake up and just want to get it over with and the next day I'm thinking os AS, it's been a mind f*ck for me.

Appreciate any feedback.

Jef

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24 Replies
Tall_Allen profile image
Tall_Allen

I know one guy who had GS3+4 and stayed on AS for 4 years, eventually had SBRT, and has been doing fine (PSA undetectable 4 years later). I know another guy who had GS3+4 and stayed on AS for 2 years and then had SBRT, but 2 years later he has LN metastases. How does this help you?

RJAMSG profile image
RJAMSG in reply toTall_Allen

Good morning, do you think that dichotomy is related to inaccurate biopsy’s or more aggressive 4 in the one that has the LN Mets?

Tall_Allen profile image
Tall_Allen in reply toRJAMSG

It was occult metastasies.

MauiJef profile image
MauiJef in reply toTall_Allen

TA, How does this help me?? I'm on here just trying to gather info like everyone else. How does any of your answers help anyone? Everyone is different, the same treatment may not have the same effect on every person right? Everyone will have their own side effects right?You're just passing along your knowledge, which is great, but it's your opinion and people may use it or not. If 20 people responded and said they had to have treatment within a year, although everyone is different, it may cause me to rethink postponing treatment, just as if 20 people said they had another 5 years before treatment, that might make me a little more comfortable in possibly waiting. This may seem idiotic to you, but I'm still not sure of what I want to do. So I want to gather as much info as I can.

Tall_Allen profile image
Tall_Allen in reply toMauiJef

That is exactly the point I was trying to make. Anecdotes, like the ones you are asking for, will not help you make a decision. Only statistics based on large numbers of people (each an anecdote!) can help you.

Maximode profile image
Maximode

I’m on AS with UCLA, my DX is very similar to yours, I’m just about one year in (see profile). I’m scheduled for a 2nd MRI next month followed by a biopsy (MRI guided). After a few thousand $$ of trying different holistic treatments, I found one that is actually beating back PC pretty well. I won’t mention it on this forum until I have results from the next MRI/biopsy. I will say, I’ve settled in my mind that I’ve made the right decision so far, and is due to me taking 100% charge of my health (it’s a deadman’s wish to solely rely on a medical team for advice). As a result of it, I feel I know more than the average person on all things that affect PC.

MauiJef profile image
MauiJef in reply toMaximode

Max, Appreciate your response.

tsim profile image
tsim in reply toMaximode

Don't even mention it then unless you have some clinical data/trials to support it.

Atlantic77 profile image
Atlantic77

I went on AS following my initial Dx of G3+3 in 2018.

Confirmatory biopsy one year later detected G3+4 with 30% of Gleason pattern 4. Continued on AS while trying desperately to access SBRT treatment in France.

Unfortunately I was unsuccessful and following a constantly rising PSA and a mpMRI which strongly suggested EPE in December 2020 I opted for a nerve sparing RP in January 2021 with the best surgeon I could find.

Fortunately, the RP went well, zero incontinence from the outset, erectile function greatly improved over 2 years with daily 5mg Cialis, PSA undetectable.

I must add that I was 44 at the time of treatment and in pretty good shape which may have contributed to the limited side effects.

So overall the only regret I have is the stress and strain of not being adequately informed by the medical profession at large about possible treatment options and the slow rate of implementation of recent technological advances which offer improved treatment modalities.

Peer groups and forums like this are invaluable although its very important to listen carefully to well-informed contributors and stay alert to the plethora of anecdotal pseudoscientific 'advice' one is obliged to sift through.

Tall_Allens site is a must.

Best of luck to you !

CarverD profile image
CarverD

IMO anything over 5% grade 4 is upping the risk level. I was 20% grade 4 in one, 3+3 in another, with a third tumor the biopsy missed all together. After 9 months of research I opted for HDRB as a stand alone treatment. That was 3 years ago and I don't regret my choice at all. This is an extremely personal decision that requires you to weigh all of the possible outcomes and what you can live (or die) with. Wishing you well on this journey!

MauiJef profile image
MauiJef in reply toCarverD

Carver, appreciate the info...

jimreilly profile image
jimreilly

Hi Maui Jeff--I had a diagnosis of both prostate and kidney cancer at 64, was a 4+3 instead of 3+4, did a few years of watchful waiting, and then when things looked a little strange after one biopsy (hard to remember details) I opted for surgery at age 67 (had not found this site yet). I did have incontinence and effects on sexual function as a result of the surgery, and eventually a male sling surgery to help the incontinence (it did). So far, 12+ years later PSA still undetectable, for which I am grateful. But you'll find all kinds of individual stories here--ones where people seemed to have decided (or guessed) correctly (for them) and ones where they didn't. One story or several stories do not make for a decision for anyone else. Obviously I don't regret those few years of watchful waiting, and things have, so far, turned out well on the prostate cancer front. You will want to make a more informed decision than I did, and you have the opportunity to do so, at least in part based on statistics about different outcomes for both watchful waiting and the results and side effects of different kinds of treatment. To some extent it's a crap shoot. I wish you luck and some peace of mind negotiating all this, and I wish you good luck with whatever path you choose.

MauiJef profile image
MauiJef

Jim, appreciate your response and I 100% agree it's a crap shoot....Glad all is well with you

groundhogy profile image
groundhogy

My opinion is that waiting only gives advantage to mr. cancer

allshallbewell profile image
allshallbewell in reply togroundhogy

Thank you. There are potential risks and rewards with every choice. In my opinion there is a big difference between Active Surveillance involving major changes in nutrition, exercise, sleep etc and just “watching.”

Derf4223 profile image
Derf4223

MauiJef, What is your PSA doubling time?

Re biopsies, they sample 12 cores or so, and miss a lot. So its a form of Russian Roulette to hope the biopsy saw it all.

MauiJef profile image
MauiJef in reply toDerf4223

Derf,

Since my psa tests began they’ve never doubled. My last few text we’re, I believe, 4.1, 4.9, 4.7

I have another mri n biopsy scheduled for march and depending on the results , we will decide on a treatment or roll the dice again 😆

Have a great night

Maximode profile image
Maximode

Agreed urologist are not a goto for anything other than RP. And, their approach to AS is wait until you are ready for RP, and provide little to nothing in the way of alternative SOC. Due to the sensitivity of the this forum, and others that have already replied here, I’ll keep my holistic approach out of public view - I wish you well on your journey.

allshallbewell profile image
allshallbewell in reply toMaximode

I value holistic approaches and appreciate learning from the experiences of others while sharing my own.

It doesn’t imply what others need to do or should do to shine a light on approaches that are different from the ones offered with a traditional medical model.

This is especially important in light of the history of so many men being pressured to undergo procedures that they may not have needed, often resulting in less than optimal results.

Whether it is for a brief period or for many years, those of us who choose AS in most cases want to be proactive in terms of our sleep, exercises, nutrition, stress management so that we are not simply waiting in a passive way.

I wish you well. I would be happy to hear more about your approach - even if in a private message if that works better.

Maximode profile image
Maximode in reply toallshallbewell

I’ll briefly highlight my holistic approach:

1- Diet (it’s a given)

2- Resistance and cardio exercise a few days a week.

3 - Taking a Ferroptosis approach, supplement to weaken PC stem cells with Sulforaphane (OncoProtect ES) and Curcumin. Kill PC using a specific Artemisinin protocol I have fine tuned, based on several months of trial and error. Careful not to add supplements that inhibit Ferroptosis is a must.

I have tried a variety of supplement stacks, enduring large amounts of money outlay and side effects, that dialed my PSA back to 5.7 from 9.2 in just a few months, but it wasn’t until I landed on killing PC via Ferroptosis that I felt like I was making headway.

I have a MRI scheduled for late Jan 2024, and followed by a 2nd biopsy to see how things are going. All the while I am in UCLAs AS program.

I’m not recommending this approach to anyone, I’m comfortable living with this disease and keeping things in check. Being that you persistently asked, here it is 🙂

allshallbewell profile image
allshallbewell in reply toMaximode

Thanks! I appreciate learning what others are doing. I am happy to describe what I am doing - without recommending it to anyone.

I start each day with 200 pushups, and ab exercises - plus planks after the push-ups - in groups of 50 - taking a break on Sundays.

I eat no meat other than salmon once or twice per week, no refined sugar, no white flour and almost no dairy. I drink one non alcohol beer with dinner.

I do daily intermittent fasting - with first meal usually around 2-3 pm but around noon if my wife is home to be sociable.

I eat veggies, some fruit, rice and beans and some eggs. For dessert I mix plain coconut milk yogurt with almond or peanut putter, homemade granola and Orgain Vanilla Protein mix.

I walk a lot, run a fair amount and lift and use the sauna 3-5 days per week. I also do 90 seconds or so of very cold water to end my shower each day.

After 10 months on AS, my MRI shows no change and my psa has gone from 4.2 to 3.6 to 4.1. I have a transperineal biopsy coming up in a few weeks.

I have met with a team at Dana Farber and have asked the medical oncologist to be the point person.

I have very little trust in Urologists.

I am very positive and hopeful and draw on prayer, meditation and yoga to help manage stress and enhance overall well-being.

I try to optimize sleep and to get a bit of sunlight in my eyes right after sunrise while walking a bit on the ground with my bare feet each morning for grounding.

It is my intention to never have surgery and avoid radiation if possible.

I have one core Gleason 7 (3+4).

I did GPS/Oncotype testing and the number was a bit high -37.

I did fairly extensive genetic testing in light of family history and it was all negative.

I love life and wake up every day filled with gratitude for another day to be alive.

I welcome ideas from others about what you are doing.

allshallbewell profile image
allshallbewell in reply toallshallbewell

I also have apple cider vinegar with turmeric in water before meals and take Omega3/Vitamin D.

witantric profile image
witantric

what is your psa density? That is more important than psa.

aceace12 profile image
aceace12

guess i missed something..... you look like you would be on AS

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