Newly diagnosed

Hi All,

I wanted to introduce myself as a reluctant new member of your exclusive club.
I was recently diagnosed and am looking for some guidance. I am lucky enough to live in NY so have access to some of the world's top institutions and specialists.
I have consulted with the Chiefs of Urology at MSKCC (Dr James Eastham) and NYU (Dr Herbert Lepor)
I am an otherwise healthy 65 y.o. who has always been active my entire life.

Routine annual physical 08/2016 revealed a PSA of 7 ( first and only PSA )
Negative DRE
4K-56
3T parametric MRI revealed a 10mm PI-RADS 3 lesion

MRI guided fusion targeted biopsy performed on 10/26/2016

4 targeted cores were all benign
12 random cores - 6 of 12 positive

Left lateral apex - 3+3 5%
Right medial base - 3+4 95%
Right medial mid - 3+3 80%
Right lateral base - 3+3 70% with perineural invasion
Right lateral mid - 3+3 30% with perineural invasion
Right lateral apex - 3+4 80% with perineural invasion

Stage T1c
Prostate size 42 cc

Trying to decide on course of treatment.
Dr Lepor from NYU recommends open RP (he only does open)
Dr Eastham from Memorial Sloan Kettering recommends Robotic RP (he does both) although he clearly stated that the cure rate will be about 80% with either surgery or radiation and encouraged me to talk to Dr Zelefsky.
Waiting for consultation with Dr Michael Zelefsky who is the Radiation Oncologist guru at Sloan Kettering.

My initial decision is to have surgery rather than radiation. I like the fact that the Ca is removed and can be followed accurately with future PSA tests, and radiation is an option down the line if needed.

I welcome any and all suggestions from those of you who unfortunately have experience with this.

Thanks in advance.

Post Edited (Bosco) : 11/11/2016 11:25:03 AM (GMT-7)

Let me be the first to welcome you, Bosco. It sounds, as of right now, that you're asking the right questions. With those couple of G7 cores, treatment is likely in your future. Another great surgeon to talk to in NY is Tewari, he has thousands under his belt, and has uniformly good reviews from the guys here who had him.

Ultimately it's a personal decision which way to go. If you're organ contained with no escaping cells, then either surgery or one of the various flavors of radiation will likely cure you. You're right, if you want knowledge of your ultimate pathology and an quick PSA descent to zero, then surgery is the way to go. If you're worried about surgical side effects...and honestly they are all across the board....then radiation probably has fewer and less onerous immediate side effects.

I'd suggest you get yourself a big accordion folder to put all your paper and reports in. Get copies of everything. Take a notebook...and someone to write in it...to all your consultations. Write down your questions before you show up. It's also a good idea to ask to have a confirmation of your slides from either Epstein at Johns Hopkins or Bostwick labs. They are the true experts at diagnosing PC. Ask your primary Uro to send them.

Keep us posted on what you learn. We're here to listen and help point you in good directions.

Hi halbert,

Thanks for your thoughts.

As previously stated I did have two sets of experienced eyed evaluate my pathology slides.

You state:

"Ultimately it's a personal decision which way to go. If you're organ contained with no escaping cells, then either surgery or one of the various flavors of radiation will likely cure you. You're right, if you want knowledge of your ultimate pathology and an quick PSA descent to zero, then surgery is the way to go. If you're worried about surgical side effects...and honestly they are all across the board....then radiation probably has fewer and less onerous immediate side effects."

I think the key here is "less onerous immediate side effects" since, from my understanding, those same side effects will typically show up several years down the line as the radiation does its damage.

Hi, Bosco, and welcome to the club none of us volunteered to join. It seems that you're a lot like me in that you immediately started learning and planning a course of action. That's a good way to be, IMHO.

I do, however, seriously recommend that you meet with at least one good radiation oncologist - preferably a few who practice different specialties within radiation oncology. If your PCa is organ-contained, radiation can be just as effective as surgery, AND some of the newer radiation methods seem to have lesser side effect profiles.

I suggest that you search out any post by a member known as Tall Allen. In his signature at the bottom of all of his posts, he has links to high quality research studies on the disease control and quality of life (side effects) results over time, for SBRT patients. Stereotactic Body Radiation Therapy is often known by the name of the machine used, the most popular of which is CyberKnife. These studies will help you to understand how effective that type of radiation is and how uncommon it is for patients to have serious side effects over many years.

I'm not trying to tell you that any type of radiation is "right" for you. I'm just suggesting that you get input from radiation oncology along with surgeons. You may be pleasantly surprised.

BTW, personally I am just a few years older than you and there is no way I want another major surgery, with its surgical risks and side effects, if I can have the same likelihood of disease control and lesser side effects from another treatment mode.

Hello Bosco and welcome. It sounds like you are doing your due diligence and that is great. You certainly want to check out all the options for cure; seeing Dr. Zelefsky is a great move since he is one of the best.

Just a couple of corrections/elaborations on some of your assumptions. While it is true that surgical side effects generally get better over time and radiation side effects generally get worse, the bottom line is that when things settle down patients generally have a better chance of avoiding the onerous SE's of incontinence and ED when they choose radiation. Read Dr. Scholz, "Invasion of the Prostate Snatchers", search our forum for studies posted by Tall Allen that compare treatments, Google search the NEJM study on Quality of Life or simply ask Dr. Z and you will get the straight scoop. Also, the idea of a backup option is certainly worth considering. But...there are equally effective salvage treatments after a failed radiation as after a failed surgery so this should not be a tie breaker. Again, search our forum or discuss this with Dr. Z to get the truth.

I'm not telling you not to choose surgery. Rather that you should make sure you understand the FACTS and check out your options before making a choice - which is obviously the path you are on so good for you.

Jim

Sorry about your diagnosis and that you have to join us. That said, I hope we can be helpful to you. You've already received some great advice and I'll chip in with:

I'd still get a second opinion on your biopsy slides from Johns Hopkins. The difference between that and the second opinion you've already received is that all they do is evaluate prostate cancer, which is not true for other pathologists. Will they find anything different? Probably not, but it's so easy to do I don't know why you'd pass on the chance.

Re treatment options, pretty much any treatment should cure you (assuming no re-classification of your biopsy). Surgery would be fine, as would several types of radiation such as brachytherapy and SBRT. I'm glad you're meeting with Zeleksky and you should keep in mind that PC is slow growing and you have plenty of time to make a decision.

BTW, you've already seen that doctors tend to recommend their own speciality. Hence the open surgery recommendation from that doctor and the robotic from the other. It will likely be the same when you meet with ROs.

Yes, and given your equally good chances of success I probably should explicitly said that you should base your decision on potential SEs and the differences between a (hopefully) immediate PSA drop to zero for surgery versus the slow PSA tapering (and potential bounced) with radiation. Some will imply that if you pick surgery you get two bites at the apple (since you can have radiation as a back-up), but the reality is that radiation also has back ups, so I really don't see an advantage there.

Bosco
Hello, welcome to our "club". I am very impressed with your posts, you are doing your due diligence and already following the steps to get the best and most effective treatment, with those experts in NY . Also seeking out the answers from professionals (as well as the experienced veterans her on HW )who can add the extra input the the Doctors sometimes possibly avoid telling you. Our own Tall Allen has excellent insight and references as well as the gents above that have already responded. We are an awesome support group here, stay with us.

I just want to add something other than technical advice, more supportive. Of the many posters here, I see your stats are much like mine, so your post hit home for me. However mine became more advanced before I was even diagnosed( with a high PSA of 71)and it had spread to four met spots on my bones. As nasty as your DX is now, I would gladly trade places with you in a moment, if I only could. So for your case, I say go for the cure and keep that foremost in your mind!

I feel that an important part of your battle will be the emotional part of it . There will definitely be highs and lows, a roller coaster of emotions to follow. Please use the search bar at the top of this forum and look for "Letters to the newly diagnosed". You might find some solace and hope and inspiration there.

So keep vigilant, keep posting, we are very interested in your journey, and most of all, keep the faith that it will get better!
Wings aka Dan in So Cal...85 degrees today

Bosco-glad to hear you are seeking out several specialists; that's that best thing to do. My husband chose Dr. Zelefsky for his PCa treatment and had SBRT which he completed in mid August. We are both so glad we found out about Dr. Z. and SBRT from this site. We are sure it saved my husband from needless suffering. We initially were convinced on staying very local and sticking with older therapeutic modalities since we didn't know anything other.
Good luck to you my friend.
Cynthia

An aside from one individual on the radiation/surgery conversation. I'm a surgery patient, and I have essentially zero negative side effects. The studies and data are all over the place on the subject, and there will never be a true comparative study done. It's just not possible.

However, I'd say this: if you're leaning towards surgery, here are some questions to answer, as honestly as you can:

1. How important is it to KNOW your actual pathology? Surgery is the only way to know for sure what you have.
2. What is your general health like? If you're in decent physical condition, no major issues, that makes a difference.
3. How are you doing in terms of age related issues? Do you have ED now? How about urinary issues now? Note that it is extremely likely that post surgery you'll move down one or two steps on both of those fronts.
4. What does your surgeon say about it? How experienced his he/she? Hundreds? Thousands? Ask them to share their personal track record. Mine looked at my records and my tests, and said, "For you, in your specific stage and general health, I think you've got a high probability of hitting trifecta within 6 months" I hit it in 6 weeks. (trifecta means: cancer free, no urinary issues, no ED)

UPDATE :

Hope all is well and that everyone is getting ready for a great Thanksgiving.
After having posted before I now have all the facts and would like some input from the members here who have taken this journey.

65 years old with no family history.
PSA-7 ( first and only one )
4K-56
3T MRI - PI-RADS 3/4 with two different radiologists from to NY institutions
Targeted fusion biopsy - 4 targeted cores were benign (?) and of the 12 random there were four Gleason 6's and two 3+4's
I'm being categorized as low intermediate risk.
I live in NY so have access to some of the top docs in the field.


Saw Dr James Eastham who is the Chief of Urology at MSKCC.
Said I am a good candidate for robotic prostatectomy and advised me the cure rate of 80-90% is the same for surgery and radiation with slightly different SE profiles. He encouraged me to see his colleague who is the radiation oncologist guru at Sloan, Dr Michael Zelefsky, and get his thoughts.

Saw Dr Zelefsky this past week and had a long and informative consultation. Now I'm more confused than ever.

He said I am definitely a candidate for either LDR Brachytherapy ( without hormone therapy or external beam ) or SBRT monotherapy. When pushed he was slightly more in favor of the LDR Brachytherapy and we spent more time discussing this although his nurse gave me literature on both. He said the surgery to place the 50-60 Palladium seeds is done with general anesthesia and takes about 2 hours. It's basically a one time thing and then I would be followed carefully with PSA's and a follow up biopsy at about the 2 year mark. Possible MRI's too if for some reason he felt it was needed.
He pointed out that the cure rate for both this and surgery are 90% ( he has published many of the random studies ) and the choice should be made based on the side effect profile and my personality type.

Regarding Brachy, on the one hand, I like the fact that it is less invasive and doesn't require a long recovery period but don't like what I perceive as the uncertainty of it and having to constantly "look over my shoulder" wondering if it's doing what it is intended to do. Rather than incontinence issues the concern is more with potential obstructive issues that can be addressed with medication. Also, the potential for collateral damage to the bladder and rectum is a big concern to me although he said he uses the Spaceoar which helps minimize any peripheral effect in these areas.

Wondering if I should delve more into SBRT as treatment rather than LDR Brachy....definitely concerned with curing with minimal QOL issues.
HELP TALL ALLEN !!

As for surgery, I like the fact that the prostate is gone, you get a definitive path report of the true Gleason score and other than dealing with the side effects I'm hopefully over and done with it except for follow-up PSA'S. Downside is I don't like the thought of having major surgery at my age, having to live with a catheter for 7 days and the potential incontinence and ED issues that are prevalent.

I appreciate your allowing me to share my thoughts with you since many of you have been down this path. Please let me know your thoughts on what you might do if you were in my position.

Wishing you all the happiest and healthiest

Bosco said...


Regarding Brachy, on the one hand, I like the fact that it is less invasive and doesn't require a long recovery period but don't like what I perceive as the uncertainty of it and having to constantly "look over my shoulder" wondering if it's doing what it is intended to do.

Please let me know your thoughts on what you might do if you were in my position.

Bosco, I'm glad your appointment with Dr. Z went well. He is one of the best at what he does and you should feel confident you got good info from him.

Re what we would do in your shoes, it's really impossible to answer. What I can tell you is that my shoes were similar to your shoes and I chose LDR Brachy. Copy and paste my journey from my signature if you want to see my experiences. I am now 8 years out and experience ZERO side effects except for loss of about 75% of my ejaculate. That's no big deal and I'm especially appreciative of no urinary or ED issues which, along with cure, are the 'big three".

Re looking over your shoulder, I'm honestly not sure that there is much difference between surgery and radiation in that regard. I've watched members here for 8 years. The surgery guys seem to get just as anxious as the radiation guys during follow up PSA tests as they never really know if they have a recurrence until seeing that PSA result...just as we radiation guys have to watch the PSA for signs of recurrence. My simple minded way of looking at the choice is like this: Both options are likely to cure you. Surgery has the value proposition of providing immediate knowledge of pathology and knowing that the prostate is "gone" if those are important to you. The radiation choices you are reviewing provide a better chance of not having onerous side effects if that is important to you. The other stuff that happens rarely like late term radiation issues and dying on the table during surgery are low percentage items - I tend to want to understand those risks but pretty much discount them since the main value propositions are so much more common and important.

I'll admit to a radiation bias colored by both my choice and my view of the collective experiences of men I have seen on this forum since I've been here.

Good luck to you and just make sure your doc is VERY experienced in whatever procedure you choose.

Jim

Bosco - With SBRT, you are engaging not only the radiation oncologist, but also the physicist, machine technicians and nurses. I just completed my SBRT sessions this past Wednesday. I saw my radiation oncologist before the first treatment and after the last. In between it was just me and the tech staff. Not a really big issue, though, because the doc was in the next room if we needed her.

One major factor that I learned when discerning my treatment path is that as long as both surgery and my choice of radiation have the same percentage likelihood of success, they similarly have the same potential for failure. Neither is superior to the other. I based my choice on a blend of the side effect profiles and the impact the treatments and recovery would have on my life. Those of us having relatively low-risk pathology are lucky to be able to choose based upon these criteria.

One other thing to note, as long as Tall Allen is still on sabbatical. If anyone tries to tell you that there is not sufficient research history for SBRT to be considered a mainstream treatment, ask them if they know what research is really there. Dr. King (in Flushing, NY) has already published his 9-year results, and is soon to publish 10-year results. Then ask them how long the research history was for IMRT before it became standard of care. IIRC, that was 11 years. Not a huge difference. I felt that the 9-year results told me enough.

Whichever way you go, you can feel good in knowing that you looked at all of your options and chose the one that was right for you. In any medical decision process, that is the end result you want.