Another newbie seeking advice

Greetings and well wishes from CO.

Unfortunately I have joined a fraternity that none of us wanted to be a part of, but seems to be that most of us here are members.

44 years old, soon to be 45 and was diagnosed on March 7th. I am turning here to educate myself more about my diagnosis and am thankful for any input, advice, and help that others can provide. I someday, hope to be able to do the same for others.

My story began back in September when I ran into a stair ballast in my home. Doctors searched for a couple of months but could never find any issue with the front side of me. Started to have urinary symptoms in mid to late November. Sent to a urologist in early December and search came up empty. Was given a DRE and found nothing unusual. Asked if I ever had a PSA. My answer was no, but what does it take? As I think most of us know, not much, outside of a blood sample. Came back at 6.36, and the urologist urged a biopsy.

Went back to my GP who stated that that wasn't needed, as there was no baseline. Put on Doxycycline for 2 weeks and retook PSA after being of the antibiotics for 10 days. Took PSA again in mid January. Down to 5.3 and PSA f (free PSA was at 20.2%) Tols very low chance of cancer. Didn't want to risk it, so went and got 2nd opinion

2nd opinion was to do a DRE and have a PCA3. DRE was normal, but PCA3 came back at 45. Was advised to have biopsy, which I had 2/27/13.

Biopsy report showed the following:

4 of 12 cores positive
Left apex: 3+3=6 20% of tissue
Right apex: 3+3=6 40% of tissue
Left base lat: 3+3=6 5% of tissue
Left apex lat: 3+3=6 20% of tissue

Had MRI 3/22/13 showing no sign of moving outside of prostate including to lymph nodes or seminal vesicles.

Had full body bone scan today showing no evidence of metastasis to the bones.

Have looked at Cyberknive, surgery, and seeds. Worried about surgery from what I have gathered about where my tumor(s) is/are located and side effects. Concerned about CK, as no real long term data. Looking to get feedback on seeds and options for other treatments that others are willing to share.

Thanks in advance! I wish all of you the best.

Welcome to HealingWell.

Decisions are tough, and all we can do is give you our experiences. I am a surgery guy, partly because I wanted to know what was really in there. Turned out I had need of adjuvant radiation, and now HT, so I can't speak for one treatment over another.

The guys will chime in shortly.

Hi,

Based on the biopsy report, it would appear that you have a highly curable case of PC. With a Gleason 6 and a PSA under 10, your prognosis should be very good after having the treatment of your choice.

With four cores positive (and one of them at 40%), I would not recommend AS because the biopsy only gives a "guess" on the status of the PC. The only real way to know the full extent and aggressiveness of PC is to examine the removed gland under the microscope.

Almost 30% of the time, the post-op pathology reveals a more aggressive (and sometimes more extensive within the prostate) cancer.

For this reason, I am also a "surgery guy." However, it is quite fair to advise you that you might very well be cured just as effectively with EBR or seeding. You should consult with HIGHLY EXPERIENCED radiation oncologists & urologist/surgeons to learn the pros & cons of all forms of treatment.

Only then can you make a good, educated guess that you can base on your comfort & confidence levels with all of the treatment choices.

Younger patients tend to recover more rapidly (and often more completely) than older ones. The skill of the surgeon, of course, is most important. Same with radiation for that matter.

With surgery, if the surgeon is skilled, and no complications arise, you should regain full continence and most of your sexual function (if the surgery is nerve sparing).

You should ask a surgeon how many prostatectomies s/he has performed (should be at least 300) and what is their percentage of positive surgical margins. You should ask a radiation oncologist if it is possible that a new case of cancer could be triggered 15 years into the future by EBR.

As you can see, there are things to ask about every form of treatment.

When you think of a question, you should do 3 things.
1- ask us here on the forum for our own experiences related to it
2- ask the appropriate doctor when consulting with them
3- Google the question & sift through dozens of articles

If your Gleason score is accurate (as suggested by the biopsy), you need not rush into any final decision. But with 4 cores positive, you should certainly decide on your chosen form of treatment by summertime so you can begin dealing with it and then get on with the rest of a VERY long life.

Good luck!
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1.
Semi-firm erections now happening 14 months post-op & slowly getting a bit stronger.

Colorado,
It does indeed sound like your situation is very treatable, and fairly similar to my own. My first choice was AS which I did as long as it was feasible. Then I chose brachy because of the very concerns that you have with surgery and side effects. I could not be happier with my choice, and frankly, the only time that I even think about PC today is when I come on this board to see how others are doing. My treatment was done at Schiffler which is in WVA. I would recommend it to anyone, but it appears that there are highly skilled oncologists throughout the country.
God Bless

Hi Colorado, and welcome to our little corner of the world. You have come to a good place with immeasurable help and knowledge from those that have "been there, done that" with respect to being told we have PCa, learning about the beast, deciding on a treatment path and moving on. Please keep in mind that with your statistics you have time - time to learn about PCa and the various treatment options - so don't panic!

I'll second Tall Allen's suggestion about getting a 2nd read on your biopsy slides from a highly experienced lab such as Bostwick and Epstein - considered two of the best and a 2nd opinion is usually a good thing to add to your dossier. At this point the good news is you are a Gleason 6, but with the high %'s a 2nd read would be the thing to do.

Along with forums such as this where you can learn from people that have and are going through what you are, do as much internet research as you can. When I was at your point in my journey I encountered the "paralysis by analysis" syndrome as I was spending several hours a day doing all of the research and reading as much as I could - but that's o.k. as it will put you in a better place in terms of deciding your choice of treatment.

There are a number of great books out there as well - Dr. Patrick Walsh's "Guide to Surviving Prostate Cancer" and Strum and Scholz' "Invasion of the Prostate Snatchers" are two that I found incredibly helpful during that part of my journey.

You will also want to talk to and if possible meet with as many of the medical experts in the different treatment approaches as you can. Andrew said it best, you have lots of options and it will be difficult, probably find yourself bouncing back and forth. One of the absolute most important things to consider is the results of the specific practitioner - someone once said "It's not the arrow, it's the archer."

Meet with as many of these medical professionals as you can - either in person or by way of phone consultation - and when you do be sure to ask for their specific outcomes post treatment - % regression free, continency (and have them define what "continent" means - to you and I it means NO issues, while others may qualify that with "only one pad per day" or "only when straining;") and the same goes with ED. They all have these statistics and if they say they don't or are unwilling to share that would be a cause of concern for me.

As part of my journey to learn about the various treatment options I downloaded, purchased, and copied a number of studies and results that I would also be happy to share with you, so if you are interested shoot an e-mail my way and I'll reply right away.

We are all out here to help - my very best wishes to you in this journey.

Welcome C. monkey ! - sounds funny. You came to the right site. You will find your answers here. Best wishes to you.

Don

Colorado,

There are obviously several good options in your case.  For me it came down to knowing my own personality.  I chose surgery because I wanted to know exactly where I was at.  I hate having my PSA checked, but I also like seeing that undetectable coming back and knowing that at least for now I am cancer free.  With radiation that is not always the case and for me worrying about every little ache and pain is far worse than the regular PSA check.  I was very fortunate in that my side effects were short lived and minimal.  I also had the good fortune of having relatives in the medical field who pointed me to a great experienced surgeon.  At your age and you should do well with whatever option you choose.  Best wishes. 

 

Colorado,
Your age would favor surgery, but the apex tumor would favor some sort of radiation, because of the higher probability of positive margins and incontinence with surgery.
Any of the radiation types would work well. The brachy patients on this forum seem to do very well in terms of both cure rates and lack of side effects. Having an apex tumor was one of the main reasons I chose brachy over surgery and I have been extremely satisfied with the treatment.
JT

Welcome from a former Colorado Springs resident. You have gotten some great advice that I cant add any value to. Just wanted to ask how your original complaint that sent you to the doctor in the first place is? That may help you decide what to do.

If I were in your shoes when diagnosed I would have done seeds. But I suffered with an enlarged prostate which made urinating a nightmare for years. The enlarged prostate made seeds not an option. So Surgery not only treated the cancer, but also has made urinating easy as a teenager and painless now. You have to consider the whole picture. Good luck.

Hey gams we're fairly close I live in Lakewood by the Federal Center. I was at first a The Urology Center of Colorado (TUCC) patient right by the football stadium until I watched the Landess video. Then I leaped ahead to the next century for treatment at CU Medical Center.

Colorado Monkey below is another link I posted a couple of years ago after my 3 years post treatment anniversary explaining how I chose my TFT and what the state of the PCa art and this forum were back then.

https://www.healingwell.com/community/default.aspx?f=35&m=2052334

Thanks to all for the great advice!  I truly appreciate it.  Just wanted to let you know that I have started doing alot of the things that have been suggested here, so thanks for letting me know I am on the right track.  I have started keeping a log/journal of things related to PCa, I have learned the hard way to get copies of everything (as it is a FT effort to trace back and get these things afterwards), I have read the book by Patrick Walsh (which I bought immediately after being diagnosed), and I am trying to get as many opinions as possible.

I thank all of those folks for the suggestion of meeting with Dr. Crawford.  I actually did this back on 3/20/13, as I have a friend that works at Children's Hospital in Denver and she was able to get me in to UCH rather quickly.  The group at UCH/Anchutz is planning on doing a roundtable of my case to provide me options.  Dr. Crawford's opinion seemed to be open surgery and hopefully be able to spare the nerves as he felt this would be better in my case. He also suggested that he truly felt that focal therapy really wasn't for my case, but we will see what the roundtable has to say.  They will be doing a 2nd opinion of the biopsy tissue as well.

I have been mainly working with a urologist out of Boulder that did the intiatial diagnosis and it was her opinion that due to the apectic nature of the cancer that she would suggest CK, brachytherapy, or IMRT.  Do any of the fine folks of Colorado have anybody they would also recommend outside of Dr. Crawford or that specialize in seeds?

I am also willing to travel if there are people that come highly recommended.

Thanks again to all for your help and sharing your stories and experiences.  Much appreciated!

Thanks Ziggy9!  Great advice and I will also check out Dr. Westmacott at TUCC.

While I love the idea of focal therapy, it seems that very few guys are good candidates for it in actual practice. There's usually a requirement of only one or two detectable lesions on only one side of the prostate. Most typically (80% of the time from the numbers I've seen) prostate cancer presents as a multi-focal disease and is not amenable to focal treatment. It also depends on some really good imaging (like color doppler US) and some really good image readers (like Lee, Bahn or Ukimura). Also, if your concern is long-term data, it's probably not for you.