Just diagnosed with pc (gleason 3+4) / MRI guided fusion biopsy. Had bone scan & CT of abdomen & pelvis that were clean. Options presented were Active Surveillance; Radiation; and Surgery. PSA 4.9
Any personal experience and/or thoughts would be appreciated.
Where are you located? We may be able to recommend doctors to meet with.
Oklahoma
Clinton Medbery is a radiation oncologist who specializes in SBRT in OK City. That's the only PC doc I know in OK. Can you travel for treatment?
Thank you so much! I will look him up. Travel to OKC would not be out of the question.
Thanks Bob!!
Agreed! I don't have a family history, but my feeling exactly. I don't want to have to think about it blowing up between checkups.
Thanks so much Bob! Greatly appreciated.
Abraxis,
The first question that arises in my mind is whether you should try treatment or try active surveillance. Your 4.9 PSA is low, only a little higher than normal and is considered "low risk". Your Gleason score of 3+4 is considered "intermediate favorable" risk - the "4" part of the score meaning that you do have some cells that have mutated enough to be considered potentially dangerous, though overall your cancer is not highly risky. See: s3.amazonaws.com/targetedon... for a chart describing risk factors.
I think you need a real prostate cancer specialist to look at your MRI and biopsy data and reports to try to determine whether the quantity of tumor cells is high, low, or in between and whether he or she recommends treatment or not. There are institutions (Johns Hopkins Hospital is particularly well know for that but I expect that the Stephenson Cancer Center at UofOK is also very competent) that provide second opinions on biopsy results.
Another question regards your age. If you are 60 years old and in good health, death from PCa is a distinct possibility and treatment now, while you're young (compared to many of us) and healthy may be more desirable than waiting for the threat to become greater. If you are 80 with a bad heart or other problems, your prostate cancer is probably not a big threat to you. Something else will likely get you first.
If you decide on treatment, then all of the standard methodologies produce a high percentage of cures for cases like yours. Surgery, external beam radiation, brachytherapy (planted radioactive seeds), and sophisticated variations of these all work. I think the issues between them have to do with side effects, recovery time, and ease of treatment. However there is another factor that I think is particularly important - the skill and commitment of the doctor. The better your doctor, the more likely you are to get a cure and the less likely you are to have severe side effects and complications. A doctor with little experience, mediocre skill, or a lackadaisical attitude can do a lot of harm and even a great doctor may not be able to come after him and make everything right.
Find an expert. For surgery, don't pick a local urologist who does a half dozen radical prostatectomies a year. Get a well regarded specialist surgeon who does one a week, or even better, three or four a week. The same is true for radiation. Don't get a guy who treats a hundred kinds of cancer and other diseases with just a half dozen prostate cancers per year. Find a specialist.
If you decide on active surveillance, be sure to keep it active. Get regular PSA tests and track what's happening.
You are lucky in that you've found the cancer early. You've got time. Use that time to find the best doctors, get the best advice, and understand all of your options.
As you do your research, ask questions here if you need help. We'll probably give you all kinds of conflicting advice, but you'll get ideas to choose from.
Best of luck.
Alan
Alan, Thank you so much for your thoughtful and insightful response. Great questions and great information. The "chart" provides great perspective. I will definitely give Stephenson a call, I am only about an hour and a half from there. I am 69 years old. My only other major issue is severe lumbar spinal stenosis and degenerative disc disease. I was in the process of scheduling a back surgery that would involve multi-level fusions.....then this little detour occurred. Other than that, well controlled hypertension and not much else of major import. The surgeon that I will most likely this week set an appointment to speak with has done over 1,0000 DaVinci prostate surgeries and has a great reputation. The hospital where I had my biopsy done was first class and they do a lot of prostate surgeries there. May set an appointment with a radiologist. I was given the name of a Doctor (out of the same hospital) that specializes in Prostate cancer treatment.
I understand regarding the conflicting advice. It's a complex issue and we all at the end of the day must choose for ourselves how we go to battle.
Thanks again for the great information. This site is a blessing and I am very appreciative for all the brave men that are willing to share their stories and help the "brothers in arms" ;)... Blessings
I do recommend seeing a radiation oncologist to get additional options. The radiation technologies often involve less pain and simpler and faster recovery than surgery - though modern "robotic" surgical techniques involve a lot less cutting and sewing than the old "open" surgeries. Side effects of the two modes are different, but mistakes by either a surgeon or a radiation oncologist can have severe consequences.
Best of luck.
Alan
I actually have a call in that I made this morning to get an appointment!!
Hey there ..
Had the old fashioned IGRT....has worked for many and seemed to have worked for me now so far...I highly recommend some sort of radiation ....way fewer side effects ....my libido is good and very minimal ED.....good luck in your decision...think hard about it and the side effects you will want to live with...
David
Incidentally, on another topic, I also suffer from spinal stenosis that resulted in a pinched nerve. I was 71 at the time (I'm 73 now). The stenosis caused the nerves running out of the spine to my left leg to be pinched. I had severe pain all up and down the left leg and I lost the use of my quadriceps muscles. I couldn't sleep because of the pain. Over a few months my left leg lost a lot of muscle mass. I could no longer walk and had to use crutches, a walker, or a wheel chair. I was told by a number of people that the only solution was surgery. However a friend of my wife who is a physical therapist told me I had to try physical therapy first.
I tried it. I went to several sessions with a professional physical therapist and learned the stretches and exercises. Then I started working on them at home, doing them three times a day and gradually increasing the number and types of exercises. I began walking on my back porch, at first I could only do about 10 steps, holding a walker an inch off the floor in order to catch myself when the leg collapsed or the pain became too great. But over a period of months I built up more and more, progressing from walker to cane, to nothing but my legs. The first time I walked a mile I was ecstatic. Within six months I was hiking 5-6 miles over hills and a year after starting, I did a 10 mile hike up a long hill and back.
I still have discomfort and stiffness in my leg and occasional light pain, but I never did get the surgery. The last time I saw the surgeon he said he knew for certain that he could make my condition worse but he wasn't sure how much better he could make it.
So, all of this is to say that, if you haven't tried physical therapy, and I admit that it takes hard work to make it work, it may be worth trying before committing to surgery.
Best of luck.
Alan
Thank you for sharing that Alan. Unfortunately, in my case, the stenosis and degeneration is so bad that any exercises of a "therapeutic" nature have resulted in episodes of immense pain and being bedridden for several days.
I manage to be able to be mobile a few hours a day by getting epidural steroid injections about every three months and am able to manage pain & inflammation with Naproxen.
So happy for you that the PT helps!!! That's wonderful!!
Thanks again...all the best
I got useful pain relief by taking 3 ibuprofens (600 mg). It never eliminated my pain but did give me some relief for an hour or so. For safety, I limited the ibuprofen to no more than a couple of doses per day.
Best of luck on your surgery.
Alan
My PSA went from 4.8 to 9 in three months so I'm sure I have pc (waiting to see my onc for biopsy).
After doing a lot of googling I'm going to have prostate removed. The reasons are:
- Why wait and give it a chance to spread.
- It's easy to do radiation after surgery if needed; surgery after radiation is more difficult.
- Avoids a long period of ADT and loss of muscle and libido.
Everyone, including responders above, say to find a doctor / team that does lots of surgeries (i.e. one or two a day). Experience leads to fewer side effects.
Good luck,
Bill
Thank you Bill! Your response is in line with what I have been feeling. I understand that there are those on both sides of the surgery decision, but the risk of having this thing run over me while it is still very treatable is not one that I'm eager to take.
Best of luck to you...keep me posted on your journey.
That’s exactly what I said at the time my psa was4.25. Docs scheduled me for surgery the said let’s do an MRI. Tumor outside the prostate up against my rectum and nerve bundle invaded. PSA means very little. Don’t wail too long and get an MRI. Tomorrow.
Thanks for reaching out and sharing the information!!!
I would opt for surgery, sooner rather than later. By the time I was diagnosed my cancer had progressed further than yours. I had a PSA of 11 and a Gleason of 4+3. I opted for surgery first, but experienced bio-chem recurrence. I’m now undergoing hormone therapy and EBRT. Of my treatments, surgery was by far the easiest to deal with physically and emotionally. I only wish I had done it sooner. Good luck.
Thank you for your response. I appreciate your perspective....I am greatly leaning in that direction. I'm sorry to hear about the diagnosis. Having said that, I am amazed at some of the great outcomes (albeit a tough road) that a lot of guys here have had.
Believing for the best for you!
Although this is a group that no one wants to be a member of, welcome nevertheless. I hope you find the chat/info as helpful as I have.
To echo the other responses: get as much info as you can re surgery, radiation and AS. It sounds like you're leaning towards treatment vs. AS. Understandable. I chose AS at Hopkins for 7 years before my numbers proved worrisome. Having all my parts in working order for 7 years was worth it to me.
I, too, had 3+4 GS. PSA 23. Based upon NCCN guidelines (their information is current and based upon extensive review of the literature), I chose external beam, ADT, and brachyboost. Despite my anxiety about the radiation treatments themselves, they were non invasive with minimal side effects (other than zapping my sexual being which, for me, was a BIG deal). The ADT began prior to (neoadjuvant), during, and after treatment. I had my last injection (I hope) of Lupron in May. I found it devastating. But, that's a story for another day.
Bottom lines: learn as much as you can. There are numerous online sites that will provide you with valuable info. Read. Watch videos of the procedures. Weigh the pros and cons of your options (and you have several; no rush in making your decision). Talk with uros, ROs, and medical oncologists. Ask you questions and make sure you understand what is being said to you.
Good luck to you.
EdinBaltimore
Edin,
Thank you so much for reaching out and sharing your journey with me. I am so thankful I found this site. Such a great group of guys who so unselfishly take time to share their stories. Yes, all of this is very helpful and supportive. Thank you for the balanced advice.
All the best to you.
I had very similar experience to yours. I'm 66 and have been diligent watching PSA over the last few years. PSA had risen to 5.9 last November. Had an MRI in February, followed by fusion biopsy in March. 9 or 12 cores were positive. All were Gleason 3+3 except one which was 3+4, and close to the edge of the capsule. MRI did not indicate that cancer had spread outside of the prostate. My cancer was not aggressive, but was high volume. All options were explained to me and my wife, and we elected for surgery, on the advice of the doctor. Surgery was May 7. I'm 6 weeks post op as of yesterday. Margins and pelvic lymph nodes were negative for cancer, and my PSA, tested last week, was less than .05, which is "non-detectable". I'm "cancer free". I am dealing with incontinence which is improving, and according to doctor should subside over the next year. He performed a nerve sparing procedure only taking nerves close to the location where the cancer was close to the edge. I'm told 100% nerve sparing on one side, and about 75% nerve sparing on the other. Erectile function is returning and expected to be close to where I was before surgery over time.
I know how it feels when this hits you. It was a gut punch for me. I'm otherwise healthy. I've read other replies and you've gotten some great advice. I went to Dr. Claus Roehrborn, chairman of urology since 2002 at UT Southwestern in Dallas. He said he had performed over 2400 robotic radical prostatectomies. To me, he's a rock star!
Good luck. Sounds like you're on a good track.
WOW. Great to hear of your excellent outcome! Thank you for taking the time to respond. I appreciate your thoughts and encouragement. The surgeon that I have scheduled and appointment with doesn't have 2400 of these under his belt, but he has done over 1000 and is very well respected and has a ton of great reviews by his patients. It's a real comfort to know that I have this group as a resource to kind of walk through my journey with. Thanks again for reaching out.
All the best!!
Bob...just a little curious. If your PSA was only 0.7 what caused you to get a biopsy? Seems like most doctors would never suggest further testing for you. Thanks!
I'm glad everything worked out for you. Thanks!
I am a little late to the string. My numbers and biopsy results were similar to yours. I found each specialist to be dedicated to a fault to what they do. They often misquoted outcome stats for other therapies. I selected SBRT for a number of reasons. 120 days post treatment now and few regrets. A little uro and bowel urgency, zero incontinence. Impact on quality of life was a big driver for me. Don’t see a decline in sexual function, but pc is a pretty good buzzkill in that area. Get a second read on your biopsy and keep reading and talking.
No worries..you're right on time! Thanks for reaching out. Great to hear about your positive results!!! I appreciate a different perspective in the mix.
All the best
Decision Time - After Xtandi
Nearly 7 years after diagnosis - it's decision time.
treatment decision 
Treatment decision: LDR brachy at MSK 
Making a decision! 
