Need some support for RARP Decision

Posted by dean007 @dean007, Jul 8 11:54am

I am 59 in decent shape and was diagnosed with 3+3 last year and was on active surveillance. Underwent a follow up biopsy in one year and now have 3+4.
I am looking at doing the RARP due to being younger(relative) and looking at all options.

Just looking for your experiences.

Thanks

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for brianjarvis @brianjarvis

With prostate cancer, much depends…..

Remember that PSA is not cancer-specific. The PSA number itself is similar to a “check engine” light on a car; it indicates that something may be wrong, and further checks should be made “under the hood.” Might be as simple as a UTI; might be BPH; might be more serious, such as prostate cancer. Just need to have further checks. No need to panic, or rush to a quick treatment decision, or get overly concerned.

However, if by “I just found out I have a lesion on my prostate” means that you just had an MRI that identified a PIRADS 5 lesion, then it’s highly likely that you have clinically significant prostate cancer. There’s no way to be 100% certain until you have the biopsy results.

As for picking the right treatment - (I never use the word “cure” when it comes to prostate cancer because recurrence is so common) - it depends on the diagnosis, your priorities, and the quality of life you expect. Let the numbers guide your treatment decisions; try to keep emotions and dark thoughts in check.

Once you get your initial diagnosis, take your time, gather as much testing information as possible, and research like you’re studying for a final exam.
If you take control of the situation, you’ll find the treatment that’s right for you.

Jump to this post

Thx. The urologist did say cancer, and yes it was a mri. He didn’t say what kind of lesion, just you have cancer. And I am sure he knows better then I. And yes just waiting to get this biopsy. I’m in Tampa. Do you think it is worth trying to do a 3 hr trip to the Mayo Clinic in Jacksonville to get treatment after biopsy. ?? Thx again. I relate to how you explain all this in a way that is understandable for me.

I’m 59 yo. Btw

REPLY

I did Tulsa Pro last July at Mayo Rochester for 4+3. I liked the technology, the low risk of side effects, and the fact that all other options were on the table if cancer returned. Also, I was at increased risk for Peronies from surgery as I have had it prior. PSA was reduced by 93% and has remained there. I have had zero side effects.

REPLY
Profile picture for 85lowrider @85lowrider

Thx. The urologist did say cancer, and yes it was a mri. He didn’t say what kind of lesion, just you have cancer. And I am sure he knows better then I. And yes just waiting to get this biopsy. I’m in Tampa. Do you think it is worth trying to do a 3 hr trip to the Mayo Clinic in Jacksonville to get treatment after biopsy. ?? Thx again. I relate to how you explain all this in a way that is understandable for me.

I’m 59 yo. Btw

Jump to this post

I was 56y when I was diagnosed with prostate cancer. (Mine was low-grade and localized, so I put off treatment for 9 years; by then I was informed enough to make a treatment decision.)

As you’ll find out there are various degrees of prostate cancer, some no more serious than a benign cyst, and others that are much more serious (and many types in-between). So, when a doctor says “you have cancer,” it’s nothing to lose sleep over until you know all the details.

What I did was to have my biopsy tissues sent to another center (Johns Hopkins) for a second opinion. It’s often good to request an independent second opinion on any test/scan requiring a medical opinion (no matter how experienced they are).

Before considering Mayo (or any other center), learn what your diagnosis is first, then get all the supplemental testing done. Once you’re fully informed regarding your diagnoses, and the treatment options available, then you’ll have a good handle on whether a different treatment center is the better option for you.

REPLY

I believe the EpiSwitch (PSE) test can differentiate the PSA from benign sources and likely cancerous ones. Multiparametric MRI (mpMRI) are rated as PIRads 1, 2, 3 and not actionable; whereas 4, 5 are. It also shows other lesions' size, if any, their location as well as the overall prostate size. Then the biopsy can be more focused.
In the UK the standard of care (SOC) is Perineal biopsy. The more common one is TRUSS, through the rectum with ultrasound. The perineal approach requires general anesthesia. The TRUSS can cause infection at a 3-4% rate some of which can cause hospitalization. The perineal approach has zero or very few infections. It also gives a better view of the anterior lobe of the prostate. If the biopsies are preceded, as they should, with the mpMRI
the images can be fused with the per rectum live ultrasound (needed for both techniques: TRUSS & Perineum.

REPLY

My husband was 64 at diagnosis, (fit and healthy) PSA 5.1 in 2023, 1 year later PSA 12, PIRAD 5 biopsies showed cancer 3+3 Gleason, active surveillance recommended (even though l5mm lesion was on outer edge of prostate). We read up on all treatments, but RALP decided upon. Fantastic recovery from op (nerves spared 1 side only), no incontinence etc., biggest issue was the catheter for 10 days. 7 weeks later post op pathology had revised Gleason to 4+3 lesion had grown outwards to 34mm and was aggressive Cribriform cancer and had spread. We are both so thankful he chose the op (he couldn't cope with the constant worry of knowing cancer was there so wanted it gone). If he hadn't chosen the operation we wouldn't know about the Cribriform (I believe more cases are being found since RALP procedures as its difficult to always diagnose it by biopsies only as the samples are too small). He now has the options of treatment for his cancer spread (distant locations, pelvis is clear) which he wouldn't have known about at the earlier stage by having the operation.
Only you can decide but we are most grateful he opted for surgery. Good luck on your journey.

REPLY
Profile picture for thmssllvn @thmssllvn

I believe the EpiSwitch (PSE) test can differentiate the PSA from benign sources and likely cancerous ones. Multiparametric MRI (mpMRI) are rated as PIRads 1, 2, 3 and not actionable; whereas 4, 5 are. It also shows other lesions' size, if any, their location as well as the overall prostate size. Then the biopsy can be more focused.
In the UK the standard of care (SOC) is Perineal biopsy. The more common one is TRUSS, through the rectum with ultrasound. The perineal approach requires general anesthesia. The TRUSS can cause infection at a 3-4% rate some of which can cause hospitalization. The perineal approach has zero or very few infections. It also gives a better view of the anterior lobe of the prostate. If the biopsies are preceded, as they should, with the mpMRI
the images can be fused with the per rectum live ultrasound (needed for both techniques: TRUSS & Perineum.

Jump to this post

We are in the UK, husbands 'only' lesion was 15mm PIRAD 5, only on the outer edge of the prostate, no other lesions shown by MRI. 3 biopsies were taken from the lesion only 1 came back positive, from the other random ones taken another 2 came back positive from lower down the prostate. Graded at 3+3 AS recommended even though all lesions should be referred if over 10mm and particularly in the location my husbands was. Thankfully he opted for surgery and pathology found lesion now 34mm aggressive Cribriform cancer, so luckily now has other treatment options and excellent oncologists too. We had to be transferred to another health authority to see a surgeon, so believe money is also a factor in the UK system as our health board now has to pay for his treatment in a neighbouring health Board.

REPLY

64. Gleason 7 (3+4). Family history. Weighing same decision. What I'm gathering is that RARP process has gotten much better with the nerve sparing, so may be leaning that way, based on my otherwise good health. Appointment at Mayo Jax in Aug for further discussion/evaluation.

REPLY
Profile picture for 85lowrider @85lowrider

I just joined here. I just found out I have a lesion on my prostate. My PSA was 11, 5weeks ago. It was an 8, week ago. Waiting to get a biopsy(first one) aug18th. This waiting around is tuff.

I know lesion is not good, but find it unsettling the urologist said I have cancer with out this biopsy, and not having all the data.

I guess I’m so nervous about picking the right cure, because after doing some reading on this disease, it sure does vary from person to person. Sure hope I pick the outcome you have had.

Thx for sharing.
Jeff

Jump to this post

Hi Jeff,

Just to share with you my experience. First, you can have a lesion that is not cancerous. I had (2) PI-RADS 4 that after guided biopsy showed not cancer in the lesions. Second, most if not all urologist want to cut out your prostate, they are surgeons and surgery is their bread and butter. I would find it unsettling that my urologist would want surgery without even a biopsy or known Gleason score. Thirdly, there are reasons for your PSA to rise and fall, depending on what you did prior to the test. You can google and compare if you fall into those categories. Do research and don't make a decision until you have all the facts. At this point, all you have is a high PSA and MRI that shows a lesion. You need the Gleason score. Your doctors will not be a good source for decision making, you will need to do that on your own. Good luck.

REPLY

48yo, gleason 3+4. Had a RARP on July 16. Mild pain after surgery. Left the hospital the following day. The catheter is annoying but doesn’t hurt. There was also some bloating from the CO2 injected for a couple of days. Also a little constipation. All in all, the recovery was easy. Fortunately, I had zero incontinence after removing the catheter. I’m still not allowed to have sex, so can’t say about the erectile function yet. Go for the surgery! Just look for a high volume surgeon. Good luck!

REPLY
Please sign in or register to post a reply.