MarkBarnes4 years ago

I couldn't agree more! I thought I provided my update but can't find it, just I apologize if this is a repeat:

I have my RP exactly 2 weeks ago. I decided on RP for many reasons...my interpretation was that an RP has more negatives upfront but provided for better outcomes a year or 2 down the road. Believe me, the idea of 5 days of cyberknife radiation, and done, was very appealing. But I had 'unfavorable intermediate' and was told that with an RP, should there be a chemical recurrence, radiation was an option. Also with an RP they have the gland to closely inspect post-surgery, and in my case, the results were better than I hoped for, and was downgraded to 'favorable risk.' (I'm not sure what the T score was, but was better than their prediction). Also with RP the PSA is a very precise measure, where with radiation it's more of an art than science.

There was partial nerve sparing on both sides. So now I'm in the rehab phase. I was sent to a 'penile rehab urologist,' Dr. Carrasquillo in Waltham suburbs of Boston; he is affiliated with Beth Israel) and saw him before surgery and have an appointment after. So I'm doing what I can do, and am ok with that. An interesting (maybe unfortunate) tidbit....this rehab urologt was the ONLY doctor of the 11 that I saw (the standard group of 3 at MGH, BIDMC, BWI/Dana Farber is 9, plus 2 more) that asked about sexual orientation. That's why I'm so grateful for this site, it has been a huge help in keeping me stable and on course for the last couple of months.

A special thanks to Tall Allen for your seemingly unlimited knowledge.

Mark

spouse214 years ago

Thanks, TA. I'm not sure where my Gleason 9 husband would be if we had explored all options, including the one you recommended four years ago to explore brachytherapy boost in addition to ADT and shortened RT. We ran around scheduling surgery, then cancelling surgery, then going the RT & ADT route in the end without exploring the third option with the brachy boost just because my husband felt he wanted to commit to the RT/ADT and get started. There's no use looking back, but when I see some posters wanting to jump into surgery right away, which often has so many side effects, I want to say what you just said: "You have time to explore all options."

My husband has had decent quality of life--got through three years of Lupron, had a one-year hiatus, and now is back on it now with fewer side effects than the previous three years of Lupron--have no idea why but he'll take it! The three-year sentence was flattening, but he had few urinary problems and just minimal radiation proctitis, which might not have been the case with surgery or brachytherapy boost. ED, of course, is common in all three. He's still out there jogging, hiking, motorcycling and . . . napping.

I'm sure you'll have this new link of yours ready for newly diagnosed men when they want to just get going on a treatment ASAP. Thanks for the link and all your help throughout. My husband is going into year five--Zytiga starting imminently because he's metastatic now. Tune in.

History:

Husband 70 yrs (74 now) pacemaker; Agent Orange 6-9/14: blood in urine; DRE suspicious biopsy 11/14: G 9 (4+5), PSA: 3.32 high Gleason, low PSA, PNI involved 11/14: Lupron taken for 33 mos and currently on Lupron again after a year hiatus.

6/15: 9 wks IMRT

9/15: .14

1/16=.093

4/16=.079

11/16=.05 (nadir)

2/17-5/17=.05

11/17=.08

2/18 .20

4/18 0.98 6/18: 3-4 bone mets

7/18 3.29

8/28 9.0 Lupron re-started

11/27/18: 7.0

; Zytiga planned 1/19

bobdc64 years ago

Good advice, problem is the newly diagnosed don't have knowledge of this and other sites where this is discussed, and are at the mercy of their urologist.

Tall_Allen in reply to bobdc64 years ago

Good point! Sometimes (like me at that stage), newly diagnosed men are driven by their anxiety to seek out information and come to sites like this or support groups.The first Uro I met with said to me, "I have a vacancy on my DaVinci schedule in 2 weeks, can I put you down for it?" I never went back to him.

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ng278681684 years ago

While I sort of agree with your advice to explore all avenues and options before doing something. In my experience being a PCa diagnosed man at age 52, PSA of 11 and having surgery, followed by radiation 2 years later, followed by hormone treatment via orchietomy surgery 2 years later. I am now a 78 year old PCa survivor for 26 years and a facilitator for our local PCa Support group for much of that time, I have seen more than a few men who after being diagnosed, were looking for "all the easy options" until it was too late and the "cat was out of the bag". (the cancer had spread beyond the prostate gland) Once that happens the disease can become a WHOLE DIFFERENT AND MORE DANGEROUS DISEASE! No one wants to possibly be incontinent or have ED because of treatment, but those are both better outcomes than other way more serious types of cancer or even ending up in a coffin. Just saying. Doing nothing, IMO is the bigger risk.

Tall_Allen in reply to ng278681684 years ago

In spite of your anecdotal observations, the data tell a different story. You have no idea whether it would have made a difference or not if those men were treated closer to their date of diagnosis. Remember, that in all cases, men were DIAGNOSED with localized disease. Even for very high risk men, treatment within 3 months of diagnosis did not have better outcomes than treatment 3-6 months after diagnosis (Gupta).

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bobdc6 in reply to ng278681684 years ago

I had high risk, G 4+5, and opted to skip surgery, and go directly to radiation and adt, which often seems to be the path after RP. In my case, the radiologist (proton) treated the prostate plus a lot of other stuff (seminal vesicles and lymph nodes).

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Lombardi244 years ago

I wish I had known of this site/resource when I was trying to decide. I trusted surgeon at Dana Farber. Ended up with mets post surgery despite thinking they were getting it all. The blood in my semen prior to all this should gave been a huge clue that the cancer had most likely escaped the capsule. Wish I knew then what I know now. My PCP said everything was fine even though my PSA was doubling and knowing my dad died from the same disease. If she had just sent me to a urologist earlier on they might have caught it in time. I just want edu ayed enough re prostate cancer.

jackcop4 years ago

As usual, excellent information and advice. Thank you,Tall_Allen.

And thank ng27868168 for keeping us honest.

ng278681684 years ago

My comment was intended more for men who have been diagnosed at an earlier age like 50s and early 60s. In many cases the younger the age at diagnosis the more aggressive the cancer is. I see nothing wrong with waiting 3-6 months before opting for treatment. The fact is though, from my experience, there are men who take much longer than 3-6 months to make a decision and more than a few who feel things like changing their diet or exercising will take care of the problem. Unfortunately that isn't the case, and when reality drops in, it's tougher to get a good result. Not a Doc, just sharing my experiences.

Gpinkk in reply to ng278681684 years ago

Yes...I agree. I am 47 and although I am doing all that I can to stay healthy (diet and exercise do help)...I am not going to ignore my doctor because I simply made lifestyle choices. I still don’t know what to do, but I know that ,at my age, there is more cell division and more years for this to develop over time.

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ng27868168 in reply to Gpinkk4 years ago

Gpinkk…, thanks for your response. It was, and is NOT my intention to scare anyone. But, as I have unfortunately seen over the 20+years that I have been a part of our PCa Support Group, I have heard guys say, as well as doctors comments to guys say, "if we had known then what we know now, I guess we should have been more aggressive in our decision making". Believe me, after being treated successfully during my 50s and subsequently suffering from ED and some incontinence, Thankfully, I am still alive, fairly healthy and active at age 78.

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Gpinkk in reply to ng278681684 years ago

I agree...being alive is a triumph & priority over any symptoms. I am really looking into & weighing my two options: HIFU vs. RP

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Tall_Allen in reply to Gpinkk4 years ago

Read this before deciding on HIFU - it makes sense for some men, not for others. In all, we need a lot of longer term data:

pcnrv.blogspot.com/2016/12/...

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ng27868168 in reply to Gpinkk4 years ago

All the best of luck to you my friend. No one wants cancer of any sort, but fortunately Prostate cancer is one the cancers that has a high success rate IF IT IS TAKEN CARE OF BEFORE IT GETS OUT OF THE GLAND.

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Tall_Allen in reply to ng278681684 years ago

Aggressive doesn't mean quicker. Too many men who have non-aggressive cancers are overtreated. Too many men who have aggressive cancers are undertreated. It's important to look at each one individually, and to take one's time. Data show that taking up to 6 months to decide for even the most aggressive localized cancers is not unreasonable.

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ng27868168 in reply to Tall_Allen4 years ago

So true. But not all PCa is diagnosed or found at the very early stages of the disease. Most men, unfortunately because of not wanting to admit to problems with, and in their "junk" area are not very consistent or good at going to the doctor until symptoms are more noticeable.

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Tall_Allen in reply to ng278681684 years ago

Actually, most prostate cancer diagnosed IS localized. It is easy to get a skewed view of things from sites like this and support groups.

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ng27868168 in reply to Tall_Allen4 years ago

Tall Allen..., OK. Obviously you know more than me and I'm not here to debate or tell others what to do. I just share my opinion based on my own experience and 20+ years of hearing the experiences of others who ended up in the same boat as myself. I guess the thing that bothers me is how many times I have heard men say, "if I would have known then what I know now, I sure would have done something different." Back in 1992 when I was diagnosed with PCa at age 52, and decided to have procedures done to eliminate the PCa, I told all my co-workers to have their PSA checked. A few weeks later my 53 year old best friend went to his General Practice physician and asked to have his PSA checked and his Doc told him, "I don't believe in the PSA check". Fast forward 20+ years later and he has endured basically every bad thing that can happen in relation to his MUCH LATER diagnosis of PCa that jumped the capsule into his lymph nodes and beyond. So...…, I guess we will have to agree to disagree. if you decide to reply, I'll respond with another incident involving an Oncologist (cancer doctor) who spoke several years ago at our group. Have a good day.

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Tall_Allen in reply to ng278681684 years ago

This post was about taking one's time AFTER a PC diagnosis - not about whether to get a PSA test (which is a separate discussion). I can match you anecdote for anecdote based on my support groups about men who rushed into treatment after getting a diagnosis and later regretted it. All of the statistics are in favor of waiting.

You may find the following NEJM article about an essay on treatment regret useful for your support groups:

pcnrv.blogspot.com/2016/11/...

This article has a questionnaire that I hope that doctors will give their patients:

pcnrv.blogspot.com/2017/01/...

I have come to believe that the AUA should have a policy that Urologists will never treat a patient within 30 days of their initial diagnosis.

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Hidden in reply to Tall_Allen4 years ago

Hi TA,

Absolutely correct regarding Urologists restrictions regarding prostate cancer diagnosis!

When originally diagnosed 5 years (2013) ago, PSA 8, biopsy readings GS 6, first and second opinion urologists' recommended RP! At that time, searched gleason score and learned that "6" was very slow growth score and may not metastasize. Did some research and elected to "Active Surveillance", after my 4th year, stopped taking blood tests, then year 2018, diagnosed with PCa PSA 1000+, significant pelvic metastasis...

So, Urologist should have referred me to an Oncologist, didn't learn the other treatments at the time.

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Tall_Allen in reply to Hidden4 years ago

At many hospitals now there are active surveillance programs. At the one at UCLA, for example, a patient is not even admitted to the program until he has had a confirmatory mpMRI/US fusion biopsy within a year of initial diagnosis. After that, he is monitored with PSAs every 4 months and given additional mpMRI/US fusion biopsies as required. It is a good idea to enroll in a program like that where they enforce the "active" in active surveillance.

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ng27868168 in reply to Tall_Allen4 years ago

I believe you and I are talking about the same thing only trying to come at it from a different angle. But I am a little confused by your comment "This post was about taking one's time AFTER a PC diagnosis - not about whether to get a PSA test." While I'm not sure but isn't the PSA test usually the first way the Docs suspect PCa? But whatever. I'll just share the other anecdote I mentioned to you and then I'll leave this particular conversation alone. Ten years or so ago, our group had the head of the Oncology Dept of our local Marshfield, Wisconsin Medical Clinic and Hospital which has over 700 Doctors of various fields, speak at a meeting. His topic for discussion was this very PSA/biopsy/treatment process. Shortly after starting his speech he stated that his father had died from prostate cancer several years prior, but seeing he didn't really believe in PSA testing, he had not had one himself. At that time he was 62. Needless to say, we were all quite surprised as was the PA (physician's Assistant) who is the leader of our group, and a spirited conversation came about. His reasoning and opinion was similar to the one we see now in which men, especially younger men, who are having "male junk" issues tend to put off visiting their Doc simply because they are more worried about ED than anything else. When that little discussion was finished, he then continued on with his speech. The ironic thing about this whole meaningless little story I'm telling is, several years after, he retired due to ill health and died a couple years ago of Prostate Cancer which had spread throughout his body. That's all. Good health to all.

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Tall_Allen in reply to ng278681684 years ago

One doesn't have a diagnosis until after a positive biopsy. I had many PSA tests before I had a positive biopsy. This post had nothing to do with PSA testing. I don't know why you can't see the difference.

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adlerman in reply to Tall_Allen4 years ago

It did have to do with a PSA test to ng. He mentioned in an early post that he had told all his friends to get a PSA test- a friend of his requested one and his Doctor denied him the test. His friend finally got tested later but it was too late.

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notjohn in reply to Tall_Allen4 years ago

What does aggressive mean? I’m still not clear what the terms “aggressive”, “high risk”, and “advanced” mean in this context. Do you know, TA?

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Tall_Allen in reply to notjohn4 years ago

high risk (NCCN definition) = GS8-10 or T3/4 or PSA>20

advanced PC = metastatic cancer in pelvic lymph nodes (N1) or in distant locations (M1)

aggressive = it isn't indolent; it is showing high risk features that seem to be changing rapidly (e.g., a short PSADT, multiple mets, unresponsive to standard therapies, early castration resistance)

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notjohn in reply to Tall_Allen4 years ago

Thanks

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anthonyq4 years ago

I had brachytherapy done on June 29, 2018, 114 seeds and after seriously considering RP and other treatments. Thought about trying to beat it naturally after reading "How To Beat Prostate Cancer in 90 Days". Also read other books and was often on this sight which was and still is very informative and full of knowledgeable and in-debt people (god bless you all). After 7 months post bracytherapy (BT), my PSA is at 1 (last checked in December). I take flow max once before going to bed (Tamsulosin 0.4MG). The biggest side effects was and still is going to the restroom, but it's a lot better and I guess I'm also use to a little discomfort now but sometime it's like it was before the BT. Grass sometimes look better from the other side, but you make the best inform decision at the time than you make the best of your life like you should be doing even if you didn't have PC.

Hidden4 years ago

When first diagnosed I had three different urologists. 2 at big hospitals and one Dr. local tell me surgery was the best way to deal with my cancer. Had it scheduled and two weeks before the rp I had a MRI. Inoperable. I take it that the majority of drs think surgery is best option if the cancer is still contained within the prostate. Here I am almost a year after diagnosed and starting my proton radiation feb 26. Spent the rest of the time on Zytiga and lupron shrinking the tumor. It has. Has the cancer spread? Was it the correct path? I chose the medical center not the method. Too many unknowns to decide for myself. Time will tell. Not even sure when I will know.

adlerman in reply to Hidden4 years ago

If you go to a carpenter for help he'll tell you he has a hammer and he'll take care of your nail unless you're very lucky and you find a carpenter with more than one tool. I've been to Prostate Support groups in several different counties in Florida. As people told their stories the most common one I heard was "when they told me I had cancer I told them to cut it out". That's sad. I was diagnosed in 2001 but even back then I was able to find information about Prostate Cancer online that helped me make a decision that didn't involve salesmanship. The VA told me the ADT shot would hold things until I made a decision and that gave me time to decide without sleepless nights. The VA did a good job catching my prostate cancer. I had treatment outside the VA because they didn't offer the option I chose but I'm thankful for what they did do for me.

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Tall_Allen4 years ago

Urologists almost always recommend surgery and is always the first and often the only kind of doctor we see. The empowered patient will take the initiative and also meet with specialists in each kind of radiation (at least brachytherapy and external beam.) I met with 6 and took 9 months to decide.

Longterm101 in reply to Tall_Allen4 years ago

Did u elect for surgery or brachytherapy?

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Tall_Allen in reply to Longterm1014 years ago

Neither. SBRT.

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Gpinkk4 years ago

I’m so frustrated, discouraged and confused. Every promising, hopeful study or research has a counter-study. Every potential solution or decision has caveats. It just seems that I’m f*cked no matter what I choose as far as treatment is concerned. Nothing ends this forever, recurrence is always possible and treatments have consequences and are no guarantees to end this.

Tall_Allen in reply to Gpinkk4 years ago

I agree completely, except that many have been successfully treated and many have minimal side effects (me, for example). You have to decide which risks and side effects you're willing to accept.

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aceace12 in reply to Gpinkk4 years ago

Hang in there you’ll. Be fine do not let it get you down psychologically . It’s treatable and curable ....

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Gpinkk4 years ago

What was your treatment? I know there are no long-term HIFU studies, but I found some promising testimonials from the yananow.org site. I’ve also been a big believer in nutrition and exercise as complementary to treatment. My age (47) puts me in a quandary and I feel anxious all the time despite having a low grade, non-aggressive situation.

Tall_Allen in reply to Gpinkk4 years ago

You sound like a good candidate for active surveillance. I don't see what your age has to do with it. I had SBRT. The people who bother to write into Yananow had either very good or very bad experiences - it is not a useful source for quantitative information.

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Hidden4 years ago

"Act in Haste, Regret in Leisure"

This is part of the treachery of cancer, the fear and the sense that I need to take care of this right now. I wish I had read the Scholz book before I made my decision instead of after having RP. I do not think I would have changed my mind but that first week after I read the chapter on treating of "Azure" CaP I had my moments. There were some "benefits" of RP, specifically that the Gleason on the prostate specimen was judged a 9 instead of the previous 8. But that was a trivial difference.

--I made the best decision I could with the information I had at hand.

-- I cannot put the prostate back in.

-- I knew at the outset that I might need eventual radiation

That said, I counsel everyone I can that they do not need to be in a great hurry to decide. For MOST of us, prostate cancer will not be the cause of death.

alangeorge4 years ago

Thank You TA!

alangeorge4 years ago

Tim outside of this discussion. What's your opinion/knowledge on Bone Scans? I had a repeated PSA of >2000 and a 4+4 G score. I feel I have just stepped on a treadmill?