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Another new member of the PC club

MEtoAZ
Posts: 37
Joined: Feb 2016

Greetings everyone.  I have been accessing this site for the past 2 months and wanted to thank those who post information and even though I have not been active in comunication to date, I have found the site to be very helpful as I have been dealing with my own cancer diagnosis.

The specifics ..

Age 52 (at time of diagnosis).  I am married (31 years so far!) and I think my wife is in more shock over this than I am.  But once the diagnosis was confirmed, she has been in attendance with all the doctor visits thankfully.

PSA 5.1, 7% free, yielded a 56% chance of cancer (I lost a coin flip in the end I guess)

Volume of 22 so normal size, but 12 core biopsy came back with two cores positive for cancer; Left apex 3+4 and right apex 3+3.  Also, two left samples were "abnormal" but not yet cancerous.

My urologist immediately wanted to do surgery (as surgeons are apt to do) and we schehuled pre-op proecedures over the following weeks.  In the meantime, I joined this forum and met with oncologists, radiologists, other urologists to get a broader picture.

I saw several posts about Cyberknife and recalled that it was one of the options my PCP had mentioned, almost in passing.  I then contacted Phoenix Cyberknife (Dr Kresl) and to make a long story short, I have begun the process of having cyberknife treatments in lieu of surgery.  I had gold seed implants this week, have MRI/CT scans next week and begin treatments a week or two later.

Willl keep you updated on my progress.  I am confident that this is a good treatment course for my wife and I and again appreciate the many folks who have weighed in on various options / outcomes.

As far as why, if someone is interested, from my research, Cyberknife seems to offer a lower risk of side effects for similar cure rate to surgery for early to intermediate stage cancer and that is up through 10 years of study now.  (especially with a 3+4 that might still require radiation anyway)

One side note, Dr Kresl wanted to start hormonal treatments first which I declined.  My current positive cure outcome is at 93%, the hormone treatments would have added an additional 1-2% to that number, so 94-95%.  Because of the relatively early stage of my cancer, I opted to forego the 1-2% and not deal with the various side effects of the hormone treatments.  He did not express any serious concerns over my decision, I think they just try to maximize the curative potential, but they don't always consider QOL issues.  As I have seen from many folks in this forum, it is up to the individual (and their partner as applicable) to figure those issues out, the doctors are not going to focus there.

Onward..

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Hi, 

I am sorry for the diagnosis that you have had at such a young age.

It's very smart of you and your wife to do research, as you have done.

As you are probably aware, the perimeter of Cyberknife (SBRT) can be adjusted; greater for aggressive disease that may be outside the prostate, and and closer to the prostate for less aggressive disease. Additionally radiation in conjunction with hormone treatment for  more aggressive disease is more cure effective.

Here are some questions for you, that possibly may help to refine your SBRT treatment.

What is the involvement, that is the percent of each of the two cores that were cancerous.

Did you have T3 MRI to that may detect extracapsular extension if it exists.

Did you have any other diagnostic tests?

.....

If you did not, I suggest that you investigate having a T3 MRI at this time. Since you only have had the gold seed implants to date, you can slightly delay the Cyberknife treatment.....I am not sure if the gold seeds that you currently have will preclude you from having this MRI, you will have to ask..............

Additionally ,there is another site that specializes in Cyberknife.......http://cyberknife.com/Forum.aspx?g=topics&f=2586    where you may wish post.

.......

Since I am detailed oriented, I am simply giving my layman's two cents. In most probability what you are doing will be very effective.

I wish you and your wife well.

h

MEtoAZ
Posts: 37
Joined: Feb 2016

Thanks for comments

I had an MRI (not sure if T3, will ask tomorrow when I have CT and MRI for treatment planning.)

I believe the right core was 7%, the left core was more like 75%, hence the 3+4.

My Urologist did send away the samples for DNA testing but I did not get those results as I decided against paying $3,500 for something when I wasn't going to do active surveillance.  Aside from the PDS Test, biopsy and the MRI, no other tests aside from that I have been scoped (urethra) and had chest xrays to prep for surgery early on prior to choosing to go down the cyberknife route.  Both those tests were normal, no issues.  I recently had a stress test which also came back normal.

My MRI had some "dark spots" in the left side where the two cores were deemed "abnormal" but not cancerous.  Dr Kresl had indicated that they could work on that area as well with their treatment plan.  I would suspect that will be part of the treatment plan.  It was another concern I had with surgery as that dark spot is right next to the nerve bundle so nerve sparing surgery may have not been an option on that side depedning on what the surgeon found while in the surgery.

 

hopeful and opt...
Posts: 2218
Joined: Apr 2009

The involvement, percent of each core that is cancerous does not indicate the aggressiveness of the cancer, but the amount of the cancer in the core..............so if there is 75 percent involvement in one of the cores, this not indicate that it is a 3+4=7, although it may be.

Please let us know which MRI that you have had,...there is also a 1.5 MRI which is a very good one as well, but the magnet is not as strong as the 3.0.

"My MRI had some "dark spots" in the left side where the two cores were deemed "abnormal" but not cancerous" ...The urologist needs to biopsy the suspicious lesions( dark spots )  in order to determine if the "dark spots" are cancerous or not cancerous...this was not done.

Since determining pathology is subjective, many send their pathology reports to a world class pathologist who specializes in prostate cancer. Two such organizations are Johns Hopkins and Bostwick.....it may be possible that you have a different Gleason score than noted, which may influence your treatment.............the cost for a second opinion, is I think is about $250 without insurance, or may be covered with some insurances.

VascodaGama's picture
VascodaGama
Posts: 2961
Joined: Nov 2010

Hi MEtoAZ

Welcome to the board. Thanks for sharing your story and details of the treatment. Many guys reading your post (and not participating) will benefit from what you describe.

I agree with you in regards to the matters of the combine therapy (RT+HT). Without the effects of the hormonal portion you may lose the estimated 1% benefit but the results are “clean” and trustful. The treatment success will be judged via the PSA, though; it may take years before one gets the “final answer” of cure. It is a period of frustration because of the bounce effect (in guys with the gland in place) of the PSA with ups and downs, before it reaches a nadir. You will need to learn in living with that for some time, enjoying life.
One member here (SwingSW) experienced this bounce during a period of 4 years. Some others done it in shorter periods of two years.

I agree with Hopeful in regards to the quality of the image exam you are going to perform. You can request your doctor to have the MRI done in a 3-tesla machine (higher resolution) instead of the other exams.

Best wishes for a successful outcome.

VGama

Old Salt
Posts: 720
Joined: Aug 2014

and good recommendations from the other two who responded.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

As a PCa survivor (5 years +) who was treated with CyberKnife at UCSF, I think you made a good choice and have execellent prospects for a "cure" based on the diagnostic info that you provided.

Don't be discouraged post-treatment if your PSA levels to not drop rapidly or are erractic, which was the situation in my case and for at least one other CK patient who has reported about his treatment on this site.  Your PSA levels should drop progressively over time and should reach 1 w/in 3-5 years (even in less time for one).

I wish you the best of luck.  Please keep us informed of your progress.

 

MEtoAZ
Posts: 37
Joined: Feb 2016

I completed my Cyberknife treatments on April 19th.  I will have my followup in July where they indicated I will likely see my PSA signficantly lower.  As I have read on this forum, I don't expect it to be at zero in the short term but the team at Phoenix Cyberknife seemed confient that my 5 treatments effectively irradiated the cancer. 

As far as the experience goes, the actual treatments are non-invasive, I laid on a bed for 45 minutes per treatment while the cyberknife machine rotated around blasting my prostate from all angles.  I then left and went to work.  I did not experience any fatigue from the treatments directly, at least that I was aware of.  For the record, the diet and related prep activites suck.  My treatments started on a Wednesday and went through the following Tuesday so I was on the low gas diet for 9 days.  I lost 11 pounds.  Because the treatments are in the mid-morning in my case, I would have one low gas meal a day, by day 3, I was on gatorade only at night as I couldn't stomach anymore jello or broth!  I am sure a lot of the weight loss was water as the dulcolax that you take early eveing pretty much cleans everything out.  I am also happy to no longer be self-adminstering enemas every morning!

Currently, I feel the urge to empty my bladder more frequently which was anticipated for another couple of weeks as the bladder deals from any damage it sustained from proximity to prostate but otherwise, I am good to go, AND everything still works ;)   Compared to the extended recovery time for surgery, this seems like a much simpler course of treatment than surgery or converntional radiation.

Thanks for those who posted their stories about Cyberknife, if you hadn't I would have even known about this option.

 

I will let you know how my follow-up goes.  Be well.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Congratulations on your treatment.  I hope it all turns out as well as expected. 

MEtoAZ
Posts: 37
Joined: Feb 2016

much appreciated.

hopeful and opt...
Posts: 2218
Joined: Apr 2009

All Radiation Oncologist do not recommend a specific diet for SBRT, Cyberknife.

"Your radiation oncologist may tell you to avoid taking certain supplemental antioxidant vitamins, such as vitamins C, A, D, and E, while you're having radiation therapy. These vitamins might interfere with radiation's ability to destroy cancer cells."

http://www.breastcancer.org/treatment/radiation/types/ext/expect/vitamins

 

Quite often there is an increase(bump)  in PSA approximately 18- 24 months out, so do not be alarmed if this happens.

The goal is to get the PSA under one.

Wish you the best

Will Doran
Posts: 207
Joined: Sep 2015

MEtoAZ,

Best wishes on your recovery. I'm glad you did a bunch of research and made an informed decision.  All of our cases are diffferent and we all need to research treatments and results according to our individual situations.  Sounds like all went well and you've made the right decision.  Congratulations and best wishes. 

You will find that your wife will be your best help.  Mine sure has been.  As you said, I think my wife was more upset than I was at first.  Then, it soaked in to me. I was 57 when diagnosed.  I went through the Robotic surgery because I had a PSA of 69 and a Gleason of 3+4 --7. MRI's were clear as to spread to other parts of the body or bones.   I wanted the cancer removed.  I hope you have the same results that I had.  My PSA went to <0.010 in two months time followed by ADT and 8 weeks of radiation.  I have remained at a PSA of <0.010 ever since.  It's been 2 1/2 years.  Becasue of a birth defect, This was my best option. 

Fight Hard and you can beat this and hopefully hear the words remission, which I am hearing from time to time from my doctors.  I will know in three weeks if my PSA is still at "0", since I've been off of the ADT (Lupron).

Know that you are in my Thoughts and Prayers

Peace and God Bless

Will

MEtoAZ
Posts: 37
Joined: Feb 2016

I appreciate your insight.  How did your PSA test come out?

CC52
Posts: 101
Joined: Nov 2013

MEtoAZ, my congratulations on completing your treatments, and welcome to the CK club! I'm happy that you chose CK over other treatment options, especially surgery. Based on the details you provided, it seems you were an ideal candidate for CK. Please come back to update your progress.

My best wishes to you and yours, and I offer a toast to celebrate!

CC

Will Doran
Posts: 207
Joined: Sep 2015

MEtoAZ

Thanks for asking. 

All of my blood work came back clear with all tests in the middle of the acceptable ranges.  They had my Total Testosterone knocked down to 17 while on Lupron.  Normal is between 250 and 1,100.  My Total Testosterone level has come back up to 134 since being off Lupron for 4 months.  That's still listed as low.  However with the rise of the Testosterone, I still have a PSA level of <0.010.  My doctors are very happy as are we ( my wife and me).  My Urologist / Surgeon is still making sure He tells me how aggresive my cancer was and that my PSA will, at some point, start to come back up at a slow rate. I was a pT3bN1 Stage and Dr. Miller told me he was going to be agressive with the treatments from the get go, when we got the results of the pathology back post surgery.   I was treated as though I was an advanced Stage 4.  However he still does say he is hopeful that I will remain at a PSA listed as Undetectable.   As that increase rate speeds up, then we will be looking at further ADT to slow the progression down.  However for now My urologist / surgeon is very happy with my progress. (2 1/2+years post surgery) He does keep this all "real" and doesn't let me fall into a false sense of "security".  Dr. Miller is now looking more at my "Quality of Life".  He gave me a months prescription of Mrybetriq to try and help slow my BR visits down.  This has increased since they put my on Prolia to increase the bone density in my femurs. Increase in urination is one of the first side effects.    My bone scans showed increase in density in all bones except my femurs, where the radiation had hit.  Thus they are trying to help that situation.  However the side effects are worse from the Prolia than I had while on the Lupron.  But, at this time, I left the appointments feeling Pretty Good & Hopeful and was told to have a great summer by all the staff.  Which I will try and do, if the rain ever stops. A little sunshine would make this even better.  I have no more appointments until August at this point.  I do have a check up with Chemo in June to see how things are going with their prescribed Prolia for Bone Density.  That is just a weight check and BP check and talk to the new Oncologist (head of the department) and my PA about how I'm feeling. 

My hope for you is that you will also come through this and start to see many BIG "0's" in your tests.  "0" is a wonderful number in the right circumstances. 

Take Care, and Best of Luck

Peace and God Bless

Will

MEtoAZ
Posts: 37
Joined: Feb 2016

Lower than Doctor expected and ahead of plan ..  another follow-up in 4 months but things are going well and no ill side effects.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

That's great!!  You're doing much better than I did following my treatment.  Hope your PSA #'s continue to drop rapidly.  Congrats!!

VascodaGama's picture
VascodaGama
Posts: 2961
Joined: Nov 2010

Great news. This is the begining in the way to remission. It is typical for RT patients to experience a bounce in the PSA levels (ups and downs) till it settles in a nadir. It may take some time for you to have that peace of mind. Till then just enjoy and celebrate the result.

Best,

VG

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