Davinci or stay on AS?: 1.5 year ago... - Active Surveillan...

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Davinci or stay on AS?

Youngc29 profile image
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1.5 year ago had 3 cores taken = 3+3 PSA slowly up from 3 - 3.6

today 10/14 cores positive with a mixture of 3+3 and 3+4.

Urologist has recommended surgical removal.

feeling overwhelmed as I have had this on my mind for a while now and my fears have now become realised.

How do you guy's cope with the mental stress/anxiety? I'm also worried surgery could really impact my quality of life.

I'm only 46...trying not to stress my wife out as she is early pregnancy and thinks I should get it removed.

I have also had testicular pain on the left for past 6 months and yesterday I put my lower left back out from god only knows what.

Feeling a bit crap at the moment however I need to stay positive for my son, wife and future baby.

I just wanted to share my story as I know a lot of you guy's are dealing with similar situations.

Should I get the Davinci procedure or wait for some future technology?

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Youngc29
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GeoffNoLongerAS profile image
GeoffNoLongerAS

I believe you are asking the wrong question. I was on AS for about 11 years. About 1.5 years ago I had to seek treatment. The advantage in AS is the advances in medicine over time.

Have you had a prostate MRI? Was the biopsy MRI guided? The MRI can give you a lot of information on where the cancer is and volume.

Based on what you have posted, it does seem like time to move to treatment. It does seem odd that you were accepted for AS. All the criteria I have seen mention minimum age around 60ish.

The time I was AS I spent learning about PCa, treatments, etc. Have you had genetic testing? That is a big field today.

In going forward there is a book, Surviving Prostate Cancer by Dr. Patrick Walsh that was a great help to me. Though a bit dated, it had some very good information on the different treatments, and I believe, well worth reading (I have no ties to the book).

You do not provide any information as to your location or country. The book does give a good recommendation on finding a center of excellence and where to find one in the US.

As to choices, the two major choices are surgery and radiation. You need to research both (the book helps) to understand that pros and cons of each. The decision will be as much a personal decision as well as medical.

I would urge you to involve your wife. Mine was of immense help in listening, helping me to understand the information, and helping me through my decision.

In the end I chose surgery. My biggest driver was to have the surgeon able to put eyes on it and make sure there were clean margins. Your decision may be different depending on your thoughts. To date my PSA has been undetectable (they will not ever tell you it is 0, just that they cannot measure it).

As to your question, DaVinci was not one of my criteria. From studies I have seen, it is the number of surgeries performed that determines the outcome. I found an experienced surgeon that was the head of the department in a teaching and research center of excellence. He happened to use laparoscopic surgery. The surgery went well and I was out the next day.

I would urge you to do some research. Decide on the type of treatment, find the best place to have that treatment done and good luck going forward.

Youngc29 profile image
Youngc29

I had an MRI last year and again just before this last biopsy, they provided no useful information according to my urologist as it showed a lot of shade and bright spots. The Biopsy I believe was TRUS via perineum. In the past 14 months since initial diagnosis (Australia) I have been reading up and made diet and lifestyle changes. Cut out mostly dairy/eggs and meat apart from Organic frozen salmon (not sure if that's good or not).I tried strong cannabis oil for many month's also. My urologist is supposed to be very experienced with good result's.

I also have a very small prostate 16-20cc. Free PSA is 10. PSA slowly climbing to 3.66. All of the 3+4 cores are from lower left of prostate.

I don't have an oncologist, I have had a look at different therapies, some docs like the YouTube guy Shultz I think seem to be very anti surgery. Proton therapy is not available in Australia but it looked promising when I looked at it. I am just trying to stay in a positive mindset (difficult for a Glaswegian) and not get too down about my situation. I have a PET-CT scan tomorrow and have been advised to stay away from pregnant woman and small children for 6hrs! I'm still young and my biggest worry at the moment is the ED and incontinence (I will start Kegels soon also) just don't think I can risk staying on AS as I was hoping as new potential treatment options like bee venom etc emerging all the time.

I have also dropped about 17kg in the past year possibly by not drinking beer much anymore.

Youngc29 profile image
Youngc29

Also if you get a cancer diagnosis and are 45 or under in Australia they automatically do genetic testing. Brca1/2 and another all ok.PSMA-PET scan showed no metastasis. My urologist has penciled me in for the 5th August. I am also starting PT exercises and kegels. Googled the davinci operation and look’s scary. Left testicle pain has been bothering me for many months now but they seem to think it is chronic pelvic pain or something as I also managed to put my lower left back out. Just trying to get the courage up for what now seems inevitable. Thanks for all the responses. The idea of the catheter makes me cross my legs :)

RMontana profile image
RMontana

Feel your anxiety completely...have you considered;

1. PSMA PET scan; at 0.20 PSA it will map out your whole body and if you have PCa its 'Specificity' is in the mid 90% range...get a scan done first...

2. Multi Parametric MRI of the Pelvic Area; get this done as well...it will 'slice' thru your prostate and tell you, via a PYRAD Score, your chances are of having PCa...

But, do NOT go into surgery, or radiation without mapping your disease...the MRI and PSMA PET will tell you what is going on...THEN you choose the treatment that best fits the disease; IF YOU have something in the first place...

I wish someone had told me 2 years ago about either one of these...I would have avoided a LOT of issues I have now...had to have RP, ADT treatment and RT...trying to monitor my PSA now and make sure the treatment worked; otherwise I start all over again...

Finally, interview some doctors (really I mean just that), and pick the one that best explains your options to you. Read up on the disease and ask questions; if the Doctor gets frosty with you go find someone else...find a Doctor that will treat you like a patient and answers your questions and considers your opinion on treatment, not dismiss what you say outright...

Drinking from firehose is not easy, but one step at a time...first FIND OUT what's in there, THEN proceed from that point...Cheers

Youngc29 profile image
Youngc29

I just had RALP done yesterday morning with a good surgeon. I did throw up last night but today had a shower. I’m a bit tender and sore but have managed to let some gas out. I’m tender around the port entries. It looks like I will spend a second night then home tomorrow. I have an appointment next week to get catheter removed then appointment with urologist who should have pathology report by then. He said he managed to save the nerve bundles so I guess time will tell. I wish everyone the best on this journey, it’s certainly a life changer. Take care.

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