Advice on Next Steps

Hello, my husband (young 49 years old) was diagnosed in mid-late June 2017 with prostate cancer after all five of the six biopsies came back GS 8 and one at GS 7 (& PSA 24+ in May 2017). He moved to another local hospital, Cleveland Clinic, for a second opinion and a doctor that could perform the robotic RP.

The CT scan and MRI revealed no concerns they could see. Within less than a week after the scans, the doctor was able to find a time (with our request to expedite) for the RP in the first week of July. The RP was completed with one nerve spared (closest to the GS 7 biopsy) - quality of life due to his age.

Post op report/pathology shows:
-GS upgraded to 9
-Positive margins (partially into the seminole vesicles and described as "bulging" to the bladder)
-Lymph nodes clear - some good news, right?

4-5 weeks after surgery PSA is 1.8. My husband did not want to waste too much time to the RP when the CT scan and MRI came back as "clean" to the eye. Two local urologists (his surgeon and original urologist from another reputable local hospital system) talked about a couple of options - and really the best course was the RP followed by EBRT.

Undoubtedly, we are more concerned and understanding of the PC severity and the high likelihood of reoccurring as we begin to read more -and we feel blindsided as there was no family history of PC. The urologist recommended the follow-up with the radiation oncologist, which we had our meet and greet this week and like him very much (explained the options in some detail - although not so much proton therapy, as this clinic does not offer it). The oncologist mentioned my husband's case as "tough" during our conversation and said he would consult with his internal team of doctors to come up with the best treatment plan - but he is unable to start EBRT until 3 months out from the RP - which translates to early October - to give sufficient time for the urinary incontinence to improve. He suggested the EBRT - then mentioned possibility of hormone therapy combination, although unclear if now or down the line. Seems like he needs to consider best plans yet.

Today, we finally requested all the medical records from 2017 from the two hospital systems - so we should have them in 7-10 business days.

Questions we have - and any advice is welcome here:
1. Thought it might be best if we take the next few weeks to get a second opinion on treatment options post RP from one of the top cancer hospitals. Is there any benefit to having another opinion post RP? If so, where would we go (e.g. Sloan Kettering, John Hopkins - or any specific doctors)?
2. Any suggested treatment plans that has worked for you post RP to drop PSA levels to non-detectable? Seems like many on this site have had successful - meaning non-detectable PSA post RP - so would love to hear of anyone that had a detectable level post RP.

Thank so much for any help or insight you can provide! We have a toddler and young child, so hope to keep dad around!!

Welcome to HW, sorry you need to be here.

Sounds like you're getting great advice. Your choice on a second opinion, but likely you'll hear the same.

Detectable PSA post RP isn't the norm, but it happens. The G9 crew should be along shortly with more experiences. I'd pay attention to what TA's already said as that is the best treatment path - HT and then RT.

Hang in there and keep us updated on your progress,
Andrew

Hello wished you didn't have to be asking these questions at such a young age. As you can see from my signature your husband and I haven almost identical stats . I'm a few years older only. I'm going again in October for my 6 month checkup we'll actually it. Will be 7 months then meeting with the RO again to decide if I will be getting hormone treatment or not with my SRT which I will start in mid October the oncologist wanted to wait 6 months for stuff to heal and to make sure no problems with incontinence which thankfully I have under control about 99.5%. I think all the walking I did really Was the biggest contributor to that! I'll be interested in what path they have you guys take.

Larry

Once again the Tall one has hit all the important points and let me with little to say except "Hello, Welcome to the Forum."

As Tall said, with his positive margins, his Gleason 9 pathology, and his high-ish PSA before and after surgery, adjuvant radiation is indicated and he should receive concurrent hormone therapy. For men in his risk category the addition of hormones to the radiation makes a marked difference in the recurrence rate. The hormones will start a few months before the radiation and will last a number of months after the radiation is done. The hormones sensitize the cancer to the radiation and the hormones will stop the progression of the disease between now and the time radiation starts, which gives him some time to heal from the surgery.

One other thing. Since he's a fairly young guy and the doctor was only able to spare the erectile nerve on one side, he should take steps to minimize his sexual side effects. He should talk to his surgeon about a penile rehabilitation strategy. A normal healthy man will get several erections a day even if he is totally celibate. They happen while he sleeps during R.E.M. sleep. These nocturnal erections help keep the tissues oxygenated and prevent the development of fibrosis. When the erectile nerves are damaged these R.E.M. sleep-induced erections are affected too and things tend to shrink and atrophy. While a man is recovering from damage to his erectile nerves he should try to get several erections a week any way possible (pills, pumps, or injections) to keep his hydraulics in working order.

It's not too early to ask his doctors about it and I think it is best to start early since the hormones will gradually make him forget why such things are important. Best to have the plan in place.

Like I said, Welcome to the forum. Sorry you find yourself here but glad you found us.

Very thankful to hear these added responses! We had his follow-up with the urologist/surgeon too this week and he prescribed Viagra. I have to admit that was the last thing on our minds when we spoke to the doctor as the follow-up....seems like an important issue the doctor was driving home, although he didn't say why. He also asked much about the urinary incontinence, which my husband said is not too much improved from post RP. The RO told us this week that it's not linear healing on the urinary incontinence and he'll improve much likely in a couple of months? Thanks so much for all the comments - truly helps as we both work busy jobs with a 18-month and one elementary school age kids. Thanks again for the kind welcome!! Hope to keep the PC at bay for a very long time! Will keep posting and researching - never know what new treatments are on the horizon!

welcome to our club, and you're getting some great insights, and Cleveland Clinic is one of the great places to go for treatment...my dad was treated there for PC years ago.

Viagra isn't only for ED..but that is important. It helps increase blood flow down in that area, which is good for general healing as well. Keep us posted on your steps and process.

Another thought about this...you asked about seeking consults at MSK or Johns Hopkins...the thing is, Cleveland Clinic is as good a system as there is. The top docs across the country (and the world, for that matter) all know each other at least by reputation. He'll get excellent care at CC and while his case is unique, there is also a standard of care that he'll get that is well agreed on by the best of the best.

For now, he has to heal from the surgery before the next steps begin.

Hello Everyone,

I am NewHere123's husband. Thanks to you all, and especially schoolpsych for your help and advice. I've scheduled a second opinion on the follow-up treatment with Dr. Tendulkar this week based on that advice. Two reasons being that the first oncologst did not put any emphasis on hormone treatment (none before radiation), and there was a strong recommendation out-of-channel to have the treatment performed at the main campus instead of the satellite location.

I found this research on using nanotechnology to kill cancer interesting as they tested it on prostate cancer cells: bigthink.com/philip-perry/scientists-create-molecular-machines-to-destroy-cancer-cells Perhaps it will be an alternative to radiation in the future.

A thought for you on going to CC main campus vs suburban satellite: It may be that you could go downtown for major treatments or consults, but do brief visits at the satellite. The doctors are at both sites, it's more a question of where the special equipment might be.

I absolutely realize how much of hassle it can be to get to CC Main, depending on where you're coming from. Plus, it covers what, 6 city blocks? (But there are some great places to eat in Cleveland Heights and University Circle...I have a particular affection for Tommy's)

TempFlightRestriction,

Thank you, as I mentioned in Email, the community here helped me greatly so I'm always hopeful that I can help others out in some way in return. Great to hear that you are meeting with Dr. Tendulkar. Make sure to ask him if I get a commission for the referral if you go with him (ha ha). Seriously though, please do keep us up on how it goes. It is no BS, once we meet a new guy here, we are all genuinely interested in hearing how it is going for you.

Octorobo,

The satellite vs. main campus treatment is an interesting aspect that I don't really see discussed often. I did wonder what others thought about this. When I was first diagnosed and looking for ideas, I met two guys from our forum here for lunch. One of the guys had the external beam portion of his treatment at the main campus of his hospital, the other could have but instead, had it at a regional center. The guy who had it at the main campus had no significant complications, the guy who had it at the regional center, unfortunately, did. The guy who had it at the regional center told me that he has wondered since if his situation would have been better if he would have gone to the main campus instead. Of course, there is no way to know, maybe he still would have had the complications. Still, his words stuck with me. Fast forward about six months and I'm discussing my need for s/art with my doctor at the main campus. When I mentioned the option of getting the treatment at the hospital's satellite location closer to my office, my doctor was very strong and clear in telling me that the radiation treatment was something that I would want to have done at the main campus. I'm sure there are many guys who do just fine getting RT at the smaller, regional facilities, but as a guy looking for every possible advantage, I took the main campus treatment route.

TFR -

I was at CC last Fri. and the valet service at Taussig was so backed up I used the B Lot garage. $10 but not that far of a walk over the skyway really.