Newbie from Spain

Hi everyone

This is my first post and I would like first of all to congratulate all of you for this wonderful community you have here. It has already helped me a lot with the initial anxiety that the first diagnosis always entails. You have also collectively provided a wealth of information that it’s really supporting me towards the right treatment decision (for me).

I was tempted to just continue reading the forum and especially the most active and recent threads about treatment decision making for low risk cases, since English is not my native language. But I thought that a new PC case with its relevant data and subsequent decision process can always be interesting for newly diagnosed people in this “PSA age”. And also I would like some company and comfort!

I am 52 and until this summer I didn´t know what PSA was, but I was lucky enough that I still had with me old routine blood test reports so that I can now have a look at my PSA history:

2006 PSA 1,7
2008 PSA 1,3
2013 PSA 3,44
May 2014 PSA 3,12 Free PSA 15%
October 2014 PSA 3,74 Free PSA 14%

I visited an urologist in May for the first time in my life, and only because my wife insisted a lot that since I was more than 50 I just HAD to. The urologist had a look at my 3,44 PSA from last year and immediately ordered new test for PSA and free PSA. He was concerned with the 15% Free PSA ratio, and suggested to test again after 6 months. When I visited him in October with the new tests, he convinced me to go for a biopsy.
The biopsy was done at a private hospital in Madrid on the 15th of November. I had a catheter in during four hours (standard procedure for my urologist) and it was not a nice experience. Peeing razor blades is really an apt description that I have read in the forum for the immediate after effects. Apart from that, nothing remarkable except the results I got after one week of waiting:

1 Core Right Base with Gleason 6 (3+3). Length less than 1 mm and 5% affected tissue (micro focus)
2 Cores Right Medium with Gleason 6 (3+3). Length 7mm and 5mm, 35% affected tissue
8 remaining Cores are healthy, therefore apex and left lobe apparently not affected

My urologist is a very experienced surgeon with more than 400 RLP under his belt, so you will already know what his proposal was. No awards for guessing. He says that he can of course save the left nerve bundle, and that saving the right one is my choice as long as I am aware of the possible risks for positive margins. He says that with my age and his technique I should not have problems with ED and incontinence in the long term. But of course no guarantees given since surgery is surgery (his words).

We briefly discussed EBRT and LDR-BT. He feels that at 52 none of those are good alternatives although all of them will also “cure” me with roughly the same certainty, but at my insistence he has referred me to an urologist that performs LDR-BT, and a radiation oncologist for external RT. Tomorrow I will visit the BT specialist, but I am thinking of skipping the visit to the OR since I don’t feel that external RT is a good choice for me.

My personal preference is AS and I think that I could handle the subsequent anxiety levels fine. But definitively my wife is not in this with me. She has barely slept since the diagnosis and also she cannot understand why I am taking this long (!) to reach a decision. Therefore AS would not be manageable and also I am very slightly out of the recommended European guidelines for Active Surveillance due to the three cylinders affected and 7mm length of one of them.

Right now I am leaning towards LDR-BT, pending my visit tomorrow with the BT specialist. My reasoning is that since I have to do something, just go for the less impact possible. The truth is that I am not too worried right now by the future mortality risk and therefore I really don’t want to know the real pathology for my prostate. But of course I am also closely following how Pratoman and Caspar deal with their respective treatment decisions I will keep you posted with how this decision making progresses and of course I welcome any opinions or suggestions (comforting words are also accepted).

Greetings from sunny Spain!
/Francisco

Post Edited (vision10) : 12/15/2014 3:03:36 AM (GMT-7)

Francisco,
Congratulations on taking the steps to educate yourself beyond the suggestions of your first doctor/surgeon. IF you even need treatment at this point, your leanings toward LDR Brachy seem very prudent to me although I admit to being extremely biased. I say IF you need treatment, because when my stats were similar to yours, the term 'insignificant cancer' was used (not suggesting that your is 'insignificant'...just using the phraseology that I heard) . Therefore, I did AS for 2 years. I would have done it forever except that mine advanced to a 'significant cancer' and required a more aggressive approach. My 'then' urologist wanted to do surgery, and that is when we parted ways. I could not be happier with my choice of LDR brachy.

Francisco

Welcome from another newbie. Aye , I wish I were in sunny Espana right now. Spent last XMAS in Valencia.

In very similar point in time, the decision making phase. For me surgery v Brachy.

My URO (the surgeon) said lets go with surgery. I have met with a RO but he does not do the Brachy procedure. I meet in early January with another RO that has a strong BRACHY record. It is a tough time; this decision making process. The RO told me also that any of the treatments would work very well for me. He also said ( and I think this is usual prostate cliche-talk) ---that AS while certainly an option for me is to be considered "delayed treatment"

I am leaning towards BRACHY assuming I am a very good candidate but of course I am constantly second guessing myself. What worries me the most (the SE) are bowel issues from this process...

Finally, for me having no spouse or partner or family makes this path/this journey of decision making and thinking a bit more challenging. I suppose it can make me stronger...... or even crazier!!!

Best to you

MS

DEWAYNE---- I really appreciate those encouraging words!!

Thanks all of you for the warm welcome!

@Pratoman, yes I have seen your path to decision until now. It's very enlightening and I feel you are getting close to the finish line. Good luck to you too, as you say there is no wrong decision.

@GOP, you are right about AS, but practitioners over here are really cautious when it comes to recommending it and their guidelines are quite strict. And my wife...Thanks for your story, it's also a good lesson for me.

@Doug, thanks for your wishes. When I look at your signature I am amazed that people with your worries stick around here to help the newbies.

@BenSam, I was born in Valencia so I know what you are talking about. Still, there are even better places to visit in Spain. You have to come back some time, after all of this is behind you.

Hello Francisco and greetings from Sunny California. (Well, not really. It's supposed to rain today.) Sorry you have to join us, but this is a good place to be.

I was also diagnosed at age 52, although with a much higher Gleason score so AS was not a possibility. Personally, if you think you can handle the anxiety I think it's a very plausible choice as a G6, particularly with a relatively low level of cancer. Knowing what I know now, if I had a low risk diagnosis I think I would have gone down that path.

I do understand the concern your wife has--I'm always struck by how many new posters here have been given advice by friends and family to "get that thing out"! It's a very natural reaction to want to do SOMETHING when told you have cancer. But even if she can't accept AS, I do hope she can accept the fact that you have a lot of time to make your treatment decision.

Good luck with your BT specialist. I think you have the right attitude--no matter what treatment you choose, you have close to 100% chance of getting rid of those G6s. So you might as well choose the SE profile that you can best tolerate.

Francisco-

Welcome to HW. I hope you will have no reservations over your English, which is excellent. (Much better than some on this board!) Even your good sense of humor comes across, which is difficult, I know, in a non-native language.

Your wife, like many of us and our partners, is influenced by what she has heard about other cancers. It is part of the initial shock, and may wear off over time, as she learns about the unique characteristics of prostate cancer, and particularly, your low risk case of it.

One lesson I've learned about talking to specialists - one cannot expect a specialist in one area to know very much about the other specialties. You have to seek out and interview specialists in each therapy.

It sounds like Europe uses the "Epstein Criteria" for AS (no more than 2 cores, no more than 50% in any core, PSAD≤.15, low risk). Many AS programs in the US started with the Epstein criteria, but have since relaxed them. NCCN (many of the top cancer treatment centers in the US) now recommends AS as an option for any low risk PC. It is a very good idea to get a confirming mpMRI-targeted biopsy as part of the program within the first year.

The next least invasive therapy is focal treatment. I am particularly interested in a brand new kind of focal ablation called IRreversible Electroporation (IRE) or NanoKnife. What is interesting about it is that it is non-thermal. Unlike HIFU, laser or cryo, which generate heat (or cold) that can travel and damage healthy tissues, it stays where they put it and nowhere else. It only takes one hour, but requires one overnight stay in the hospital because it is done under general anesthesia. There is a clinical trial of it in the Netherlands, if you are interested in learning more.
http://clinicaltrials.gov/ct2/show/NCT01835977

I would consider 400 RLPs to be very minimal experience for a surgeon, and I'd only feel comfortable with 1000+. What is his positive margin rate? The inability to spare the neurovascular bundles on one side certainly cuts down on the probability of potency preservation, and may delay continence recovery too.

SBRT is available in Spain at the Teknon Oncologic Institute in Barcelona (contact: Sandra Jorcani) and Hospital Universitario Sanchinarro in Madrid (contact:Carmen Rubio). It has been used since 2003, and results with 7 year follow-up have been published. Both oncological and quality-of-life results are superior.

Quality of Life and Toxicity after SBRT for Organ-Confined Prostate Cancer, a 7-Year Study

Stereotactic body radiotherapy as treatment for organ confined low- and intermediate-risk prostate carcinoma, a 7-year study

I'm sorry I don't know who the top European doctors for LDR brachy and HDR brachy are. If you are interested in LDR brachy, I would caution you to find an RO with A LOT of experience. It matters more with seeds than HDR.

The other option that may be available to you in Europe is the carbon ion therapy available only in Heidelberg. It is similar to protons, but much better because carbon ions are not diffracted the way protons are.

I hope you will look into all options and take your time. Your relatively low PSA, low cancer volume, and low grade gives you a lot of time, perhaps years with some monitoring, to investigate and make a well-informed decision.

- Allen

@Michael, yes, AS would simply not be acceptable for my wife. It's emotion what is driving her and I'm afraid that no amount of education is going to change that. But I will of course take my time to reach my own decision, one that I feel more comfortable with.

@John, thanks for you thoughts. Minimal side effects is what I am looking for right now.

@Allen, that was a ton of info in a single post! My poor acquired knowledge is telling me that the problem with focal treatments is not in how ablation is performed, but in the lack of precision of present imaging technologies to detect all significant tumors in the prostate. Maybe when a breakthrough occurs in that domain all we know about low risk PC will change overnight. For the time being I will pass on this one

But I am intrigued about SBRT. There must be about 5 or 6 installations in Madrid (maybe more), but I don't think they are used primarily for PC treatment. My concern here is the lack of experience and how advanced they are into the inevitable learning curve. While the center I will visit tomorrow has been performing LDR-BT since 1999 and is roughly the third in Spain in terms of accumulated volume.

Since I am looking for the least amount of side effects, how would you compare SBRT and LDR-BT in this respect? I know there are no randomized test results available, but still...your gut feeling?

@Andrew, the news were really shocking. I was expecting a BPH diagnosis so it was a total surprise. My wife is coping for now because I have assured her that there is no danger at all but I will take a decision soon. My problem is finding a doctor that will support AS and helps me convincing her. Not easy.

Francisco, full disclosure Tall Allen is my mentor. What was a big factor for me is that SBRT is completed in 5 fractions 2 8 Gy each every other day and IMRT or various brachy's low dose or high dose with a "boost" typically span 7 - 9 weeks every day Monday to Firday for a total of 79 - 81 Gy.

I am Gleason 9 though. So not sure if you could be treated in shorter duration as Gleason 6.

LupronJim

Glad you're making progress! And as mentioned, as a G6 you have plenty of time to make a decision. (Although your wife may not agree.)

Keep us posted!

Thanks Jim. In fact your LDR Brachy journey is how I found this forum in the first place when it turned up during a Google search. Therefore it was the very first post I read and a real inspiration for me. Thanks again for that and for your moderation work here.

Yes, it's low. Chronic low levels of T are associated with incidence and virulence of PC. Adequate levels of T seem to be needed to keep healthy prostate cells healthy and well-differentiated. It's probably not a good time right now to supplement, but only because it might affect your PSA level. For a while after your radiation, you'll want your PSA to reflect the response to the therapy only, and not other influences. When your PSA reaches nadir, your doctor may be willing to give you testosterone replacement therapy.

Doesn't Spain have universal health care?

- Allen

It's definitely associated. Many researchers think there's a direct causal connection. The recent pilot study results of B.A.T. suggest a causal connection. Some think that SHBG is a factor, so it may be worthwhile monitoring free T as well.

Some more bad news - T levels sometimes drops following radical treatment - surgery or radiation. It eventually recovers. In my case, it went very low for about a year afterwards, but now it's back around 600. There are a few men in my support group on TRT following prostatectomy. The prostate may play some as yet unknown role in androgen production or regulation, but other systems seem to take over in its absence.

- Allen