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Recent robotic laproscopic prostatectomy

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Posted 12/8/2019 1:25 PM (GMT 0)
Good Morning,
New member, first post. Had surgery almost 2 weeks ago. Discussed Pathology report with my surgeon
earlier in the week.... Not good, Cancer has spread. Here is what I know. ... 4+3. T3b. I am 56 years old healthy. had well health check up in early October. PSA came back at 12.... (had PSA reading of 2.5 in April of 2018)
Doctor ordered up biopsy which I had about 6 weeks ago. had to wait some time before surgery... prior to surgery Dr. said there was only about a 5% chance cancer was not contained to prostate. ( that was obviously not the case). Had contrasting bone scan couple days ago, came back negative. having another CT scan on Tuesday. Having some rough days ...Trying to be strong and positive. have to wait 6-8 weeks before starting radiation.
(30 sessions over 6 weeks).. What am I looking at here guys ? What can I expect? What is my outlook ?
Would appreciate some feedback. Thanks.
Posted 12/8/2019 2:12 PM (GMT 0)
Good luck. A number of individuals here have done well after radiation. My brother just finished radiation therapy . He tolerated it without any problems. He also was on ADT.
Hero
Posted 12/8/2019 2:22 PM (GMT 0)
Welcome to HW, but regret that you need to be here. It would be helpful if you posted more details form your pathology report. T3b means that the cancer escaped the "capsule" but was not found in the seminal vesicles. Unfortunate that it escaped, but good that it was not in the SVs. Radiation treatment undertaken before PSA has a chance to rise is adjuvant radiation, and it is recommended in high risk cases. One question I have is, why start RT so soon? If you wait longer it gives your insides a better chance to heal, and makes it more likely that you will be continent when it's all over. Another question will be whether to use ADT along with the radiation. Here you need to listen to the docs.

What can you expect? RT affects people differently. For me it was a cakewalk while it lasted, with no negative side effects. But then a few months later I became somewhat incontinent. Two years later, however, I was dry. How are you doing in that department? Are you a leaky faucet down there? More important, two years later my PSA is still undetectable.
Posted 12/8/2019 3:35 PM (GMT 0)
John, welcome to healing well, glad you found us there’s lots of knowledge and support here. This is a mental and physical fight for sure and you have to be tough. But you should know that it’s highly likely you will be around for a long time you will get through the radiation, and move on to live a normal life. There’s a good chance that the radiation things up and this will be just a bad memory or year or two from now

As others have said it would be helpful if you posted a signature by going to your profile and adding it. With as much information as possible this way guys answering your posts will not have to look back at your old post to see what your situation the sig will appear at the bottom of your posts.

This is already been pointed out you should give yourself as much time as possible to heal from the surgery before starting radiation it takes time to regain confidence and hopefully erectile function. Once you start radiation therapy, that pretty much watch the progress it is likely that it won’t get much better. So if the doctors feel OK with it and you could give yourself a couple of months or three at least, it would probably be a good thing.

You mentioned adjuvant radiation but I didn’t see any mention of hormone therapy along with it. In situations like yours and usually recommended. Does your doctor mention that at all?
Posted 12/8/2019 7:10 PM (GMT 0)
Correction to note/typo above:

T3a – Penetration of prostate capsule on one or both sides
T3b – Invasion into the seminal vesicle

The NCCN guidelines may provide some guidance for treatment options.
Posted 12/8/2019 8:42 PM (GMT 0)
Hello John,

I went through a similar experience a year ago and you have to slow it down a bit as this is long journey. Your main duty right now is surgery recovery and waiting on your PSA results (sometimes they run one at 6 weeks but 3 month test is the key indicator). IMHO, the last thing you want to do is to have radiation at 6-8 weeks post-op without being in decent shape (physical, urinary) and having PSA and other data to make decisions with.

I/we would love to help more but you have left out some information which is understandable with the anxiety you are now feeling, I remember it well after my post-op phone call about my positive margin. I will ask a few questions if you don't mind:

1. What was the Gleason score from your original biopsy that led the doctor to think the chance the cancer was not contained was 5%? This is not all that important now but nice to know how you got to this point.

2. Do you have a copy of the surgery pathology report or just going from a telephone call with the doctor? The actual report may have a lot of information in it to help you understand the assessment and answer questions so you should have a copy.

3. Why do you say that the cancer has "spread"? There is a difference between "spread" and "escape the capsule" and "seminal vesicle invasion". We usually think of spread as to adjacent or distant areas. Were there positive lymph nodes involved in the post-op pathology?

4. Have you considered having your prostate pathology slides sent to Johns Hopkins - Dr. Epstein for a second opinion? It is easy to do but you have to make it happen by contacting doctor and requesting it. http://pathology.jhu.edu/department/services/secondopinion.cfm

5. Have you/doctor considered getting genomic testing on a sample of the prostate cancer tissue for assessing risk potential?

6 Have you met with a radiation oncologist (RO) to get opinion on secondary treatment options?

It is important that you get a copy of all your records going forward if you have not. You will be referring to them quite often when studying your situation and answering questions.

My urologist was very clear that we should not be doing anything but surgery recovery until the 3 month PSA results are in and we meet again in person with spouse to discuss options. This was even after my 2nd opinion upgraded my risk status to G9. My signature tells my story and summarizes the key information.

I spent most of the time from a few weeks after surgery to the 3 month mark studying my situation, asking questions, downloading studies, etc whie I recovered. I then met with urologist then RO, went on vacation for a week, and then started the adjuvant radiation IMRT/IGRT process at 5 months post-op for 37 treatments.
Posted 12/8/2019 11:19 PM (GMT 0)
Hello John, Like the guys have said you need to post your signature to help us better understand your particular stats.
and situation. First I just have to emphasize what Mumbo said. You have serious healing up to do so that is your main concentration right now. Walk every day as much as possible and do your kegals. Then wait and see what your psa is at 3 months and then if needed start planning the next part of your PCA journey. I can't believe you could get your insurance company to pay for scans so early in the process. If your Urologist was so concerned about it spreading was there any mention of Hormone Treatment? And as Mumbo said there is no way your ready to start radiation right now you have to heal up, get your incontinence under control as much as possible because once you have radiation you will never get any better. I had a much worse path report than what you have mentioned so far and didn't start radiation for 8 months. You will probably do a mri if your psa comes back detectable to see if you have bone mets or just if you need radiation just in the pelvic area. Also your team "and that's very important Get a good team in place " will have to decide whether if ADT should also be included. I'm just passing on this advice from my own experience at the Mayo Clinic. Larry
Posted 12/8/2019 11:40 PM (GMT 0)
I wonder if others can help me here. I don't understand why John's urologist is doing the scans after the surgery (and didn't do them before) ? Mine were all done after the biopsy but before my surgery.
Posted 12/9/2019 12:06 AM (GMT 0)
John,

Welcome aboard, but sorry you had to join us on this journey. My experience is not much different than yours. I also was 56 when diagnosed and considered the various treatment options and ended up going with the RALP since all indications were that the cancer was contained to the prostate. That turned out not to be the case. Six week and three month post-surgery PSA results showed some escaped and numbers were increasing so I was referred to a radiation oncologist and went through 39 sessions of radiation. They target the prostate bed under the assumption that whatever cancer is still in you is in that area. So, you don't want to wait too long to be sure it hasn't had time to travel, but as others have posted you want to be as recovered as possible from the surgery. Not gonna sugar coat it, the radiation does attack the nerves and whatnot in that area so it can set back the clock on incontinence and ED recovery. I didn't have problems with the radiation except some cumulative fatigue at the end of the week. One thing I wasn't told (or didn't pay enough attention when told) is that the side effects can continue for some time after treatment is done. It's been six months since radiation and have had issues with fatigue (nodding off at work) as well as the other stuff not working.

Best advice any of us can give you is to do your own research, ask lots of questions and be your own best advocate. Doctors have great education and training, but in the end it is your life and everything they say is a recommendation it is always your decision what to do.
Best of luck,
Bill
Posted 12/9/2019 12:30 AM (GMT 0)
John explore the "Triple Play" treatment.
Posted 12/9/2019 12:30 PM (GMT 0)
jasperx - I am thinking his biopsy pathology was more benign than his surgery pathology which led them down the wrong path and the “surprise” at the end. Only way to explain the 5% estimate of non-containment and lack of pre surgery scans but just guessing at this point.
Posted 12/9/2019 2:02 PM (GMT 0)
Hey guys thanks for all of the advice. please keep it coming.
I have added a signature to my profile. I have a Pelvis CT tomorrow. 12/10
so I was in the process of canceling my trip to Mexico first part of Feb.
maybe I should continue to heal, take some time off, and start RT in mid Feb.?
Posted 12/9/2019 3:14 PM (GMT 0)
I am based on what I have learnt from the signatures of other people here, do not take it as a well knowledged advice. T3b is not the best path status but it is important to know what your first PSA test shows. If it is well below 0.1 you have the option to wait and see before going to radiation and/or ADT, even though the standard recommendation is proceeding to adjuvant treatment. Moreover, you need a few month to recover from the surgery internal wounds if you want to avoid additional secondary effect. In summary, I would not give for granted you need more treatment right now and, at least, I will wait for my 3 month PSA test before being submitted to radiation. Of course, the scan will be useful to discard further spread and I hope it will not show anything relevant. Good luck.
Posted 12/9/2019 9:27 PM (GMT 0)
John - You had surgery on 11/26/19 and a PSA was run on 12/4/19 at 3.9? Your previous PSA of 12.2 takes some time to dissipate after surgery so hang in there.
Posted 12/10/2019 2:41 AM (GMT 0)
John, I guess all I can say is wow you have a urologist that sure is in a hurry to do everything one month after biopsy you have surgery then a week later a psa check and now two scans? Did he remove any lymph nodes and have them checked? How about your nerve bundles? As Mumbo said taking a psa check a week after surgery doesn't make any sense. I'm not a doctor of course but was at the hope lodge for 8 weeks when I had my radiation and was there with at least 20 other guys that were going through different treatments and I don't remember any body talking about a psa check in a week some had checked at 6 weeks and the rest of the guys 3 months. I see you had positive margins I hope your surgeon was experienced with lots of surgeries under his belt. Larry
Posted 12/10/2019 2:04 PM (GMT 0)
Your surgeon is recommending radiation therapy due to your bladder neck invasion, SVI, and positive margins. He did not expect this (his comment on 5% chance), thus the request to have scans and radiation therapy. It would be useful to see where your PSA stands at 6 weeks or 3 months, but you're not a typical RP case where the surgeon thinks they removed all of the cancer. I agree with the comments that radiation seems rushed and that radiation will interfere with the healing process.

One option I've read about is ADT (e.g. Lupron) post-surgery/pre-radiation for a period of time to allow you to heal from surgery prior to radiation. I can't remember the exact duration, but maybe 6 to 12 months. You would likely have ADT 2 months prior to radiation, in any case, this just stretches it out longer to allow you time to heal.
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