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New member, newly diagnosed

Oahupenguin
Posts: 7
Joined: Mar 2016

Greetings,

I am newly diagnosed with prostate cancer... Oh boy!

62 years old, PSA 50, with gleeson 9 (4+5 and 5+4) in all 13 samples areas - with an estimate of 65 to 75% cancerous... As of the biopsy 2 weeks ago.

Got a bone scan and ct done last Friday and both seem to show no metastitis... (Whoo!) the urologist was surprised!  And he was happy :-)

on the medium negative side, enlarged bladder with some back up into the kidneys, so, catheter time....

the dr put me on casodex about the time of the biopsy, and I've been taking tamsulosin for the past 5-6 months.

he now wants to put me on a hormone therapy, (injection - lupron?) and then is proposing laparoscopic surgery in a couple of months... He proposes that after the surgery there would be some radiation treatments to get the " just in case"

 

so, with the support of my wife, who has been doing the bulk of the research so far, I've joined up here for any advice and inspiration. 

Yes, we will be looking for a second opinion, and looking into UCLA as a surgical option... Insurance coverage hopefully will not be an issue...

 

your thoughts?

 

thank you

hopeful and opt...
Posts: 2266
Joined: Apr 2009

 Oahupenguin,
 
Aloha,
 
I am sorry to read of your diagnosis.
 
Do you live in Hawaii, and plan to come to Los Angeles for treatments, or do you live in the LA area?
 
As you are aware it is important to research, so you can make a best decision. There is an international group, USTOO.org that each month publishes worthwhile information in a newsletter called the "hotsheet" that I suggest you and and anyone interested in learning about PCa read. This group also sponsors local support groups where you may be able to speak with physicians and knowledgeable patients who have been there. Simply check theri site.
 
I live near Long Beach in the LA area, and if you live in this general area I can direct you to support groups in this area.
 
I, as a patient at UCLA enrolled in an active surveillance program,  am familiar with some of the docs in various specialties and some of the diagnostic tests that they do.
 
In addition to UCLA, there is  top, world known,  medical oncologist group  in the LA area that specialize only with prostate cancer patients, 
 
http://www.prostateoncology.com/
 
In your case you want the best medical oncologist that you can find. The above group is great. Also you may choose to see a medical oncologist at UCLA. UCLA is ranked, I think number 3 in the world for oncology and urology...they do everything great.
 
Here is a previous thread about a case that is similar to yours that I suggest you read, and come back, and ask some questions.
 
http://csn.cancer.org/node/296146
 
In your post you mentioned that you had a negative CT scan. Here is something that I just wrote, "

A T3 multiparametric MRI uses the most powerful magnet (T3) in clinical use. The CT scan does not provide the definition that the MRI does. The MRI may show if there is extra capsular extension, that is if the cancer has a escaped the prostate, and will affect your treatment choice....if you wish , you may click my name to the left side...I believe that I wrote about the MRI.

There are also other image tests such as PET Scans"

 

Also basically, the side effects of the various active treatments are cumulative, so if you have both surgery and radiation along with hormone treatment, the side effects can be very severe to the quality of your life. If the cancer has escaped the prostate which in your case of extensive, very aggressive cancer it most likely has, having surgery will simply add negative side effects to the quality of your life. Having surgery is simply redundant, and is not necessary; the hormone and radiation treatment will do the job.

One of the reasons why radiation treatment is superior to surgery is that areas beyond the prostate can be treated at the same time as the prostate, that is, if some of the cancer has escaped, it is more likely that this cancer can be irradicated.

 

 

Oahupenguin
Posts: 7
Joined: Mar 2016

Aloha and thanks for all the information! 

Yes, I am in Hawaii, and am considering UCLA as the site of any procedures, as they are highly rated and I have relatives not too far away.

I am working my way through the information and all the confusing abbreviations that people are using. And starting to work on finding a second opinion / other doctor who knows the options (and is a bit more communicative)

It does seem reasonable for radiation and hormone instead of surgery plus those...

question about Lupron; The urologist is waiting on authorization from the insurance people, but is saying an injection in the buttocks.... would this be a time release, and good for how long? Is the assumption tied in with this that this will be one of the ongoing therapies. (Yes, a little more reading on my part will answer that! Which I will be doing :-). )

 

thanks again, and I'll be back with some questions after I digest the rest of the information.

Old Salt
Posts: 726
Joined: Aug 2014

I wouldn't go the route your urologist has sketched out. For a Gleason 9 patient (5+4) and such a high PSA, surgery is unlikely to catch all the cancers. The urologist agrees with that since he has indicated that follow-up radiation would be necessary.

Instead I would consider an aggressive  radiation plan. As an example, I (with several Gleason 9 sites) underwent a combination of CyberKnife (SBRT; 3 sessions of 6.5 Gy) and IMRT  (25 sessions of 1.8 Gy each). Combined with hormone therapy (18 months)  to hopefully kill any cancerous cells that might have escaped. My side effects were largely due to the Lupron, although I did bleed from the bowel for a while (it was treated).

My treatment was about 2.5 years ago, so I can't give you a long-term outcome. And there aren't many data for high-risk patients such as you and me who were treated with some form of radiation.

Oahupenguin
Posts: 7
Joined: Mar 2016

Thank you for the information, I'll carry on with my reading, but it seems that radiation might be the way...

time for more reading!

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

I have not been in your situation but I think that Old Salt has provided you with the best info to date.   Good luck!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3499
Joined: May 2012

 

Ditto Old Salt. 

A PSA of 50 and a Gleason of 9 is very likely a cancer that has migrated out of the gland, even if the bone marrow is clean.  You may have some form of stricture (compression of the urethera -- urinary tube) as it passes through the bottom of the prostate.  Surgery might be necessary or advisable for that, but is unlikely to be curative for the cancer itself.  Ask your doctor what is causing the restriction and if surgery is really required to fix it (it may or may or may not be, I have no idea).

If the cancer is restricted to the "prostate bed," then I would think aggressive radiation would be the best approach with the fewest side-effects. But none of us are doctors...at least we are suggesting good questions for you to ask, lines of reasoning to follow.  Just thinking out loud, you are almost certainly going to have multiple therapies employed  -- radiation, additional hormonal, etc.  Surgery is a maybe.

My medical oncologist did med school at UCLA, and I have always heard that they are among the best, although I live in SC.  Even aggressive, late Stage III PCa is regarded as potentially curative if hit hard with heavy-duty treatmens, so you have reasonable cause for hope and optimism, especially with the clean bone marrow test,

max

Oahupenguin
Posts: 7
Joined: Mar 2016

Thank you, 

I appreciate all the comments and suggestions!

I will be heading to UCLA next week for a second opinion, and potentially starting treatment. Now I've got more questions for the Dr.

a question about radiation therapy - for any who are following - what kind of time frame mignt be typical? Daily? Weekly? ??? And for how long. Yes, I realize that is all up to the doctor and their judgement... But also trying to get a sense of time off work, and travel issues (Hawaii/California)

is hair loss typical with this type of radiation treatment? And if so (I'm guessing yes), how long until that happens.

Still more to read up on! And keeping up with work too.

thanks to all! Back to learning more!

Swingshiftworker
Posts: 1013
Joined: Mar 2010

As he reported, Old Salt received 2 types of treatments -- SBRT and IMRT-- 3 days of SBRT and 25 days of IMRT.  

SBRT typically takes 3-4 treatments every other day over a week and IMRT also typically takes 25-40 treatments -- 5 days a week over 5-8 weeks.   The duration of SBRT is pretty standard but the duration of IMRT can vary depending on the circumstances.

Hair loss is NOT somethining normally associated w/radiation treatment.  That's a well-known and common side effect of chemotherapy.

hopeful and opt...
Posts: 2266
Joined: Apr 2009

Aloha,,

At UCLA I recommend that you see Dr. C. King. He is the jake shimabukuro of SBRT, ( I know because I am a ukulele player and have studied about and met Dr, K) ..He was the first doctor  to do SBRT using the Cyberknife machine for prostate cancer when he was at Stanford. At UCLA there is a different machine that delivers the radiation, a Novalis)

I'm guessing that DR. King will first prescibe  hormones, probably Lupron....and after a two month wait , you will start SBRT treatments. (that is, if no other radiation type is used along with SBRT).

If SBRT only, . There will be a session where fiduciaries are placed in the prostate,  so the machine can target. Then afterward,  there are 5 sessions of SBRT treatments, given every other day .  .. After each session you can actually go about your business; go to a movie, play ukelele, etc. ...there should be no  ill effects after each treatment.

......................

PS. UCLA may want to do a T3 multiparametric MRI, and redo the bone scan, since they like to do their own diagnostic tests.

 

 

Old Salt
Posts: 726
Joined: Aug 2014

Yes, Dr King has an excellent reputation and specializes in radiation oncology. It will be interesting to hear what kind of treatment plan he proposes. We didn't go to Med School!

Please report back to us after your consultation, even when you decide on another therapy.

hopeful and opt...
Posts: 2266
Joined: Apr 2009

We did not go to med school; it's not for me to say what treatments Dr. King will recommend.....

Oahupenguin
Posts: 7
Joined: Mar 2016

supposedly he isn't at UCLA at the moment...

however, I'll keep you advised as to what is up. First consultation is the middle of this week, then I'll find out what tests, and suggestions he has.

i remain optimistic.... With fingers crossed.

 

Oahupenguin
Posts: 7
Joined: Mar 2016

at the moment I am scheduled to see Dr Holden at UCLA next week. And we'll see what more diagnostics they want. It's good that they like to do their own, and I didn't get the MRI here... (CT and Bone scan only)...

supposedly Dr King is away now....

Now I am wondering if any work can be done here in Hawaii... (it would be nice to minimize the back and forth)

however, I suspect the machines aren't here...

i do like the ukulele idea... Does that mean that SBRT will enable me to play?? Ok, that aside, Jake actually came to my school to play a concert for the students... Awesome work, how can you fill a sound space with solo ukulele... Some floor toys :-) and he had some of our students play on his uke 

ok, back to the topic...  

Lupron for a couple months first... what dosage is normal, and what kind Of side effects might be noticed? Any drug interaction that has to be looked out for? (Type 2 diabetes, non-insulin dependant here also) and supplements to avoid or to take?

 

SBRT seems reasonable in its lifestyle effects during treatment.... Which is nice.

but I'm also seeing postings suggesting surgery as a viable option.... It seems this is where he extra diagnostics and a lot of Dr consultation comes into play. What will be best, and give the best quality of life....

 

thanks again..

 

 

Josephg
Posts: 230
Joined: Jan 2013

Oahupenguin,

I can share with you a previous posting of mine regarding the side effects that I experienced from Lupron and Casodex hormone treatments.  I received these treatments before and during radiation treatments, as part of a two-pronged salvage treatment protocol, following a failed RP.  I was given two Lupron injections, three months apart, and daily Casodex pills.

More details regarding my experiences with the hormone and radiation treatments are listed at the link below:

http://csn.cancer.org/node/188931?page=5 - 3 postings

Hormone therapy - The most prominent side effect is hot flashes followed by cold flashes, and for me, this occurs about every 20-30 minutes while awake and active, and about every hour when sleeping.  I feel the hot flash start, and within 30 seconds my head and neck are sweating profusely (dripping), and my forearms, particularly the wrists, as well.  The hot flash lasts for about 1-2 minutes, and it subsides and is followed by cold (like Icy-Hot pain treatment feeling), perhaps caused by simple evaporative cooling, for about 1 minute.  Then the cycle repeats.  At night, I am awakened by each hot flash, and I have to throw the covers off to cool down.  I also have a floor standing pedestal fan at my side of the bed blowing over me all night, every night.  Needless to say, there is a bit of sleep deprivation that occurs.  When I complained to my wife about the hot flashes, she told me to shut up and 'man up', and she reminded me that women survive this ordeal just fine.

At the 3 month checkpoint, subsequent to starting hormone therapy, my Oncologist advised that he could prescribe Medroxyprogesterone, another hormone, which had proved to be effective in reducing the severity of hot flashes.  He further advised, however, that there was some evidence that the use of this hormone could reduce the overall effectiveness of the androgen deprivation therapy regimen, and he stated that the choice was mine.  That seemed counterproductive to the objective of my therapy, and I decided to stay the course and work thru the hot flashes for the remainder of the 6 month hormone therapy period.

Moments of slight irrationality or less 'logical' thinking than usual can be experienced, and I believe that I reacted out of character in this area in a number of situations.  Nothing major here, but there were occasions where I reflected on an event afterward and thought, "Why did I say that or react in that manner?"

My Oncologist advised me that weight gains of 5-10 pounds over the hormone therapy period are very common.  He further advised that increased exercise alone would not stop the weight gain, as the hormone treatments alter the rate at which the body arbitrarily sets aside food calories and stores them directly in the body, primarily as fat.  A reduction in the food intake, combined with increased exercise, would be the only true way to have a shot at minimizing the resulting weight gain.  After just purchasing a complete new set of business clothes, as I was going back into the office again after receiving my AMS 800 implant, I was committed to not gaining any significant weight, due to the hormone treatments.  I drastically reduced my food intake during the hormone treatment period, and through the first 3 months, I did not gain any weight.  However, over the next 3 months, I have gained 6 pounds.  (Note:  I eventually gained over 15 pounts, which I have subsequently lost.)

Other side effects that can occur with this hormone treatment therapy are permanent enlargement of the breasts (Note: This occurred with me, a slight enlargement and associated tenderness, but it did not start until 3 months after my last Lupron injection.), and liver and kidney chemical imbalances, which can be quite dangerous.  I was tested through blood tests at month 1 and month 3, and while some of my chemical readings moved to slightly outside of the normal range, my Oncologist advised that there was no reason for concern at those particular readings.

I trust that the above is helpful to you.

Also, the folks here who are replying to your questions are magnificent people, who will be 100% candid with you.  While not doctors, they all have been through what you are going through now, and their experiences are real, and their opinions are based upon their personal experiences and their own research.  Quite frankly, I don't know how I would have progressed through my journey, and am still progressing, with PCa without them.

Good luck on your journey.

Oahupenguin
Posts: 7
Joined: Mar 2016

thanks, yes, that is another set of questions. Based on what I have been experiencing for the past months, stricture may come into play, but if that is only due to the enlargement, and radiation shrinks things, then maybe additional surgery won't be needed. 

from the feedback here, (with the caveat noted) it seems like radiation and hormone is the preferred in this situation... We'll see what they recommend.

one of the reason I'm trying to get things going quickly is just that curability possibility. Once my initial biopsy was in, I've tried to jump on things asap. I hope that all helps In my case

 

hopeful and opt...
Posts: 2266
Joined: Apr 2009

Aloha,

I do not know Dr. Holden. Apparently he is a urologist. His views will be slanted toward surgery. By the way there is another urologist at UCLA who is in my opinion, a world class genius and surgeon....Dr. Robert Reiter....not saying not to see Dr. Holden, just letting you know about Dr. Reiter.

https://www.uclahealth.org/provider/stuart-holden-md

https://www.uclahealth.org/provider/robert-reiter-md

 

I wonder if you will see a radiation oncologist at UCLA

http://radonc.ucla.edu/body.cfm?id=51

 

Here is a list of radiation oncologists at UCLA; at the UCLA site , you can check out the focus that each has, education, and publishing background, etc.

http://radonc.ucla.edu/body.cfm?id=28

.........

 

You asked questions about the dosage of hormones that you will be administered. I am not knowledgeable to answer this question, or many questions about the administering of hormones. : others at this site can.

I think that it would be a very good idea for you to visit with a Medical Oncologist who specializes in Prostate Cancerwho is the best qualified doctor to administer any hormones; the expert's expert.  In fact this doctor may think that it would be best to have hormone treatment only. I don't know which of the doctors at UCLA is a best choice. You will have to research, but here is a name of a medial oncologist  that I once attended a lecture with....he seemed to be knowledgeable...    https://www.uclahealth.org/provider/matthew-rettig-md 

I  also mentioned to you , a private practice  medical oncologist group that specialize in PCa, located in the LA area.

You and your wife are being proactive, research and seeking the best that you can. I am hopeful for a good outcome. By the way, you may wish to ask to record the sessions with the various physicians.

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