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Posted 8/21/2008 5:11 AM (GMT 0)
 

It was suggested that I have shots to lower or eliminate my testosterone while I go through IMRT.  As I understand it, the hormone therapy will not kill cancer cells but will slow them down.  My non-medical hopefully logical mind tells me to have the radiation and then wait to see how my PSA goes.  As long as it's going down, I leave things be.  If it starts to rise I then realize that the cancer wasn't confined to the prostate and at that time start hormal therapy.  Tomorrow I go in for an MRI.  They will be using some kind of contrast "dye" take images to see if the cancer left my prostate. 

If they find that the cancer is only in the prostate, is my idea totally off the wall?  

Age 57 Dx  Biopsy consisted of 12 cores with 2 positive.  The 2 that were positive were at 15 % but my Gleason scores were 3+4 and 4+4.  I was totally freaked when told that the gleason at 8 was very high and very aggressive, but then a couple of docs said that though it's high, only 2 cores were positive and that made for a good prognosis.

My PSA at Dx was 6.8

Posted 8/21/2008 6:34 AM (GMT 0)
Hormone therapy does kill cancer! It is not a cure for it but until the disease learns to become independant of HT, this form of treatment will slow, and kill as much cancer as it can.

Your idea is not a bad one. But I have heard that treating the cancer with HT prior to local therapies, it can enhance the effectiveness of that treatment option. It's a tough call. If there is one therapy I would have tried to avoid, it's HT.

Remember, it's your call. Not the doctors. Whatever decision you make, you have to stay committed to it.

Peace!

Tony
Posted 8/21/2008 10:13 AM (GMT 0)
Have your biopsy slides been sent to an expert pathologist  for a 2nd reading to confirm where you stand ?
Posted 8/21/2008 1:12 PM (GMT 0)

aus said...
Have your biopsy slides been sent to an expert pathologist  for a 2nd reading to confirm where you stand ?

No, as ridiculous as I feel saying this, I'm uncomfortable asking for this to be done but I would be more comfortable if it was checked by someone else.  How do I pick an expert pathologist, and then do I contact him or does my physician?   When my first PSA came back it was 7.7 and I was referred to a Urologist who is a surgeon.  My PSA was tested by the same lab my internest uses (Labcorp) and the PSA came back at 6.7. The Surgical Urologist recommended that I have surgery stating that my cancer, with the Gleason scores at 7 and 8 was very aggressive. I jumped on the net and found this site which pointed me to other procedures. I'm 57 and self-employed.  I do not have the luxury of taking time off and to be frank, I have absolutely no retirement money - I imagined have many years left to build up a retirement fund so, if I don't work, the family doesn't eat and the scares the ##$ out of me. I couldn't afford my insurance policy so I had to buy a high deductable (savings account-type) policy which had drained what little I have.  I was hoping that the IMRT at James Hospital (OSU) would allow me to continue working.  Then I found out about the HT and pictured myself in a meeting and either having a hot flash or becoming emotional - I am trodding through all of this the best I can, but aside from the cancer, simply managing life is becoming a real drain.  I look at all the high tech machines, and all the promises of the future, but then to me, perhaps in my funk, It seems that medicine is still barbaric with options being to cut it out, burn it out, genetically change it with radiation, and then of course the chemical castration.  I'm depressed, angry, and just having an all around bad day. In about 15 minutes I'll be leaving for the MRI with some sort of contrast dye to see if the cells have absconded from the prostate - some people are telling me the MRI won't really tell me where I need to know -- I don't know what I need to know at this moment.  Forgive my ranting, I'm just feeling completely lost. 

Thanks for the ear ;) 

Posted 8/21/2008 1:25 PM (GMT 0)
Dear Hopeful,
You are in the middle of the battle and that is tough, but things will improve! No one can tell you what to do because everyone's situation is different. But, I would consider getting some second opinions. I visited 3 Urologist and two other doctor friends before I made up my mind. I was on track to have seeds and external beam theraphy. I took a 4 month harmone shot thinking I would go into radiation, and personally for me that has been the hardest thing mentally to deal with. I changed my mind and had DiVinci surgery. I had it for two reasons - I wanted to know if my pathology would show the tumor confined, and secondly if I had to have radiation I wanted to save that for salvage - the same for harmones.

In my case I was borderline - I had extensive cancer (8 of 10 cores) and some gleason 4. I also showed perineural invasion on the biopsy. Because of this the radiologist wanted to shoot all the guns. Looking back it would have been fine to do, but now I know from the pathology that it would not have been necessary as the cancer was confined. Of course I don't know what the future holds but there are always options and many people on this site are on various places in the same battle.

The hardest part of this stuff is making up your mind on a course of action. Once you do - you will be alright. God bless! RB

Age 61
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA .04
Posted 8/21/2008 4:08 PM (GMT 0)

Hi Hopeful,

Sorry to see you here but welcome none the less. I am in the midst of radiation treatment augmented by hormones. Research has increasingly noted that hormone therapy in addition to either radiation or surgery gives better results. A typical course of the hormones is two or three years depending on your circumstance. In my case the cancer had a high potential and indications of spread (lymph nodes) so I went with the radiation and hormone. The following is my experience with the concerns you have.

Do hormones work: The hormones work by starving the cancer cells of a food source. (testosterone) In the case of micrometastasis the starvation may be enough to kill off the cells. I had a PSA test done eight weeks after my first Lupron shot and prior to the first radiation treatment. It had gone from 21.5 to .82 with just the hormones. Significance of this still eludes me other than it may be slowing the advance of the cancer.  

Side effects: So far I have had very little in the way of side effects from the hormones. Yes, loss of libido (no 1 on everyone's list) and I get the hot flashes. The hot flashes are brief and infrequent during the day. Seem to come on mostly in the evening and early morning.  I have put on some weight but I attribute that to having to back off on my excercise regimen due to radiation side effects. I have also noticed that my skin is not as oily and that the hair on my legs seems to be getting thinner although I have never had really hairy legs. Could be my imagination too. I read all of the websites and potential side effects (emphasis on potential) and, like you, imagined the worst. Experience has been considerably less dramatic.

Second opinion: I had a second opinion rendered at the Mayo Clinic and it was anticlimatic. Merely confirmed what I had already been told. Mayo said I had some gleason 5. So what, gleason 4 gleason 5 treatment is the same. Significance is overall survival odds and reocurrence. Highly individual responses to treatment involved here.

Surgery vs radiation: I urge you to do some research on this. My own said that there was no significant difference in overall survival for surgery vs. radiation. There was a slight advantage to the surgery in terms of reocurrence but not statistacly significant. Surgery will mean a recovery period. The laproscopic is probably the least invasive. I had this done for a hernia repair some time back and was back at work five days later. Admittedly I had a desk job that did not require a lot of physical exertion. Surgery also provides a fairly immediate assessment of whether or not you have gotten the cancer out. PSA should drop immediately.

The radiation treatment has been realtively benign. I have been given a combination "full pelvic" and prostate course. The last week of the "fp" I had diarrhea but found it easily contolled with imodium. I have had some fatigue but that seems to have subsided now that the "fp" is complete. I still have 15 to go but feel well enough to resume my workout program. I only missed a week of this during treatment. Measure of success for radiation is a little harder to capture. Takes longer to reach a low point PSA so you don't know if you are successful or not. Recent research indicates the longer it take to nadir (as much as 24 months) and the lower the nadir (below .5) the better the results.

I am getting long winded here so I will close. If you want to know more or have a question about the above I will be glad to answer any and all.

Keep your wits and good luck.

Don

Posted 8/21/2008 5:03 PM (GMT 0)

I called my husbands urologist and found out where the slides were read and got their phone number. Called them directly to send the slides to Jonathan Epstein at John Hopkins. They do all the work there's nothing else for you to do. The cost was $250 from Hopkins and they will bill you if your insurance doesn't cover it. They will send the results to your urologist within a couple of days. Don't feel uncomfortable doing this, the lab told me it's done all the time. When it comes to your health you need to take control and do all you can to fight this nasty beast.  Best of luck to you.

Gail

Post Edited (lvdgs) : 8/21/2008 11:13:31 AM (GMT-6)

Posted 8/21/2008 10:15 PM (GMT 0)
Dear Hopeful, I agree with the above that the decision is the hardest part. We chose radiation, HT, before, and then seed implant. That was six years ago....It was fine , until the PSA began to rise. We then were confronted with a decision: More HT, until it became refractory, OR salvage surgery. ...A 30% chance that it could be cured. Unfortunately, if we had had the surgery first, it would have gotten the cancer....but five years later, it returned to the prostate...The salvage surgery provided: complete incontinence, complete ED, fistula, and did not get the cancer. We, and I am only saying WE, each case is different, could have avoided this nightmare by an initial surgery....THEN, if the cancer came back, the radiation is available. Just remember that salvage surgery is much different than salvage radiation. Pete is in line for an AUS next month, but has had repeated problems, not from the cancer, but from the salvage surgery, due to the previous radiation damage.....Each decision is one that impacts the next....I wish we had had a site like this one to hear the pros and cons of each. The problem is: You go to a surgeon...they will want to operate...Go to a radiologist...they will say radiation and HT........Good luck and keep positive. Things do seem to work out... Di
Posted 8/21/2008 10:32 PM (GMT 0)

Regarding 2nd reading of biopsy slides:

There are a number of good labs that can provide this service, however  I agree with the  previous suggestion of Johns Hopkins as a good selection for your 2nd reading. No need to feel uncomfortable asking for this; they should not mind at all and after all you are the one paying the bill.  Yes, you  just need to  ask your Urologist or the lab to arrange it.

Biopsy readings are subjective and what looks like one Gleason score to someone can appear to be different to another. It's surprising how often an expert pathologist can vary the diagnosis, but in any event it is important to have a 2nd reading done to confirm your situation.

After that you can put all of your test results together to logically consider your options.

Posted 8/22/2008 2:12 AM (GMT 0)
hopeful

I know the situation your in.  I am on hormone therapy (since may) and it is my opinion that it is not so terrible. I am 68 and retired so my situation is a little different than yours.

My story is on my website.  If you would like someone to talk to send me an email and I will provide my phone number.

If not, I wish you the best with whatever you decide to do.

Richard

Posted 8/22/2008 2:57 PM (GMT 0)

lvdgs said...

I called my husbands urologist and found out where the slides were read and got their phone number. Called them directly to send the slides to Jonathan Epstein at John Hopkins. They do all the work there's nothing else for you to do. The cost was $250 from Hopkins and they will bill you if your insurance doesn't cover it. They will send the results to your urologist within a couple of days. Don't feel uncomfortable doing this, the lab told me it's done all the time. When it comes to your health you need to take control and do all you can to fight this nasty beast.  Best of luck to you.

Gail

 Thanks Gail!

Posted 8/22/2008 3:04 PM (GMT 0)
This is to each of you who responded to my post: Thanks!

The net is full of information about the diagnostic implications and treatments for prostate cancer. The information combined with the support from all of you whose lives have been personally touched by this disease is greatly valued.

Stephen
Posted 8/22/2008 3:10 PM (GMT 0)

smilingoldcoot said...
hopeful

I know the situation your in.  I am on hormone therapy (since may) and it is my opinion that it is not so terrible. I am 68 and retired so my situation is a little different than yours.

My story is on my website.  If you would like someone to talk to send me an email and I will provide my phone number.

If not, I wish you the best with whatever you decide to do.

Richard

Richard, thanks for the support.  I read your journal and the descripton of your first hot flash followed by some concerns that you were becoming overly emotional made me smile.  I then noticed how you were becoming preoccupied with the cat and kittens and wondered if that too was part of the HT.  Anyway, I enjoyed reading the journal and wish many others would post their daily experiences - it helped me to read the couple that I read.

Take care

Posted 8/23/2008 12:58 AM (GMT 0)
hopeful
Thanks for sharing your feelings and emotions. I believe it is important to go thru the normal phases and anger and depression are two of them. THere are many decisions ahead for you and the best advice of which I agree is that the decisions are yours. Take your time and be well informed.
Hormones to my knowledge do in fact kill cancer cells, like Tony said it is not a cure, but it sure slows things down for a long time. As for radiation vs surgery, well that is a tough call, I to have read pros and cons. I personally opted for a radical but the surgery was aborted due to lymph node involvement. In hindsight I am glad my surgery turned out the way it did, because I did not go thru the incontinence. Now the hormones do kill the libido, but the positive to that is that it does kill the libido, so your normal thoughts of sexuality will be gone while you are on this treatment. Without making this long, I would advise you to get well educated, and do not be afraid to ask lots of questions.
Back to the emotional issues, please email me so we can chat away from the forum.

peace and love
Dale
Posted 8/23/2008 12:16 PM (GMT 0)
My Uncle is 68 and is also a self employed commercial builder. He is not able to retire and has continued to work through his treatment. If you look at my profile you will see his journey. He had a jump in his PSA and cancer was found in one of his lymph nodes. He does have some side effects from the hormone thrapy but he is working through it. We just got the great news that his PSA now is undetectable. He can deal with the side effects knowing the treatment is working.
Posted 8/24/2008 1:45 PM (GMT 0)

Hi Hopeful,

The hormone therapy will shrink the size of the prostate and make the radiation dose more accurate.

However, while it has been shown that . . .

(a) RT + HT is better than RT alone.

The answer to the following remains unknown . . .

(b) HT alone VERSUS HT + RT. ????

Posted 8/24/2008 1:47 PM (GMT 0)
Keeping in mind that we're all different, as are our cancer experiences, I'll share why I opted for HT with my salvage radiation:

Several studies suggest a better response if you have both. Plus, even though HT is not considered curative, my radiation oncologist said he has had patients that had long term responses to HT - even AFTER he took them off it. My reasoning was that MAYBE HT would kill some residual cancer cells floating around my system that the radiation would miss, and MAYBE that would be the end of it.

HT isn't all that bad (not all that great, either). Hot flashes, loss of libido, some subtle emotional changes were my main side effects. I did two 3 month shots, but it took another 6 months for the HT to wear off. I look at it that IF I have to look back at this with an oncoing recurrence some day, I can at least say I did all the treatment I could to get rid of my cancer.

I think a lot of it comes down to having a doctor you feel you really trust and take their advice. GOOD LUCK!
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