testosterone good or bad?

I'm 57 and recently started testosterone injections about 6 weeks ago and I'm feeling better than I have in over 20 years. My personal physician specializes in hormone treatment and said mine was the third lowest he had seen (106) in some time. I have also had an elevated PSA (7.2) reading for about 18 months and finally went in for the dreaded prostate biopsy. To my dismay the findings were not good. The right side was graded at 4+3, 4+5, and 4+3. The left side was benign, small focus of glandular atypia and a 3+3. I had my sit down with the urologist who stated that due to the high scores seeds were not an option. He also said that because of the high scores on the right side that if I decided on the surgery the bundle of nerves on the right side would be automatically removed. He then said that I would have about a 1 in 5 chance of future sexual activity. He also strongly advised me (which is exactly what my personal DR said he would do) to stop the testosterone injections saying it would speed up the growth and result in incurable cancer. This has all happened very suddenly and I am still kind of reeling from it all and am scheduled for a complete bone scan next week. Yes I'm 57, not a kid, but I'm single, feel much younger, and the surgery option feels like a death sentence. At this point I have 2 major questions. Is it necessary to remove the right bundle of nerves without even attempting to save them? And secondly, I'm being told by my personal Physician that although the medical industry takes the position of testosterone having drastic effects on cancer there are no actual studies to back that up. He said there was however a study done at Harvard Medical with 38 men known to have prostate cancer that chose to continue their testosterone treatment because of the quality of life it provided them and after 2 years 50% of them tested showed no signs of cancer and the other 50% showed no growth or increase in the cancer. I have to say that prior to the injections I was miserable. No energy, loss of strength, constantly taking naps, numerous other issues that have all disappeared since the treatment. I'm really anxious to hear your feedback and opinions. Thanks and I'm sorry we're all here.

Welcome to HW -

Based on other conversations with my uro about my own situation, I believe he would have you off any T-supplements immediately.

I've also seen a lot of discussion that T levels can't predict future PCa, but once you have it (and a Gleason 5 is the worst), I believe you have to do everything possible to help kill it.

I was G 4+4 at biopsy, and at that the surgeon said there would be a decision to save the nerves only during surgery, and the post-op path confirmed that the capsule had been broken, so it was the correct choice to remove them. The important thing is to be working with the very best surgeon you can find (if you go the surgery route), as you will be trusting him to do what is needed to kill the cancer while leaving you a good quality of life while the surgery is in progress.

You will also want to talk to specialists in seeds and IGRT - radiation methods can be combined now. I was turned down for seeds as well, but I didn't accept it as definite until I had an opinion from MD Anderson.

I'm also single, and at best I can say that you will develop a "new normal". Being alive leaves options, but as the book title says, dead men don't have sex.

I don't know about the testosterone. However, I had the same problem with location of the cancer. I consulted with three surgeons -- they all said they would take the nerve bundle. I went ahead with the surgery (age 66 at the time). It had the expected effect -- no erections. Sexual stimulation, dry ejaculations were still possible, but no erections. I started HT (hormones) a year ago because the cancer came back aggressively -that wiped out all testosterone and remaining sexual function and pleasure. Sorry for your situation. Best wishes!

NewspaperLover

Welcome to our forum and sorry you have to be here. I am not a doctor nor an expert but IMO you have to stop the testosterone treatments now. Your GP doesn't sound like he is an expert on Prostate cancer and again IMO he is giving you some bad advice. IMO the fact that your GP let you go 18 months without a referral to a Urologist with a very high PSA of 7.2 and put you on Testosterone injections tells me he is out of bounds and probably irresponsible. There are many thousands of cases where chemical castration known as testosterone hormone deprivation therapy have slowed down the growth and shrunk the size of tumors of advanced PC with high Gleason scoring like yours. It is a known fact among the PC medical specialists that testosterone feeds prostate cancer and promotes growth and the spread of this terrible cancer. For most men with Gleason 8 and higher tumors HT is their first line of defence in their treatment.

You have a very aggressive Gleason 9 cancer and it needs to be treated now. IMO you need to seek out a prostate cancer specialist in your area with experience in treating PC, with your biopsy and G9 tumor there is a good chance that your tumor is not confined to just the prostate organ. There are several scans and diagnostic tools that any good PC specialist can use to help determine if your cancer has escaped the prostate.

stop the T.Not worth the chance.

DrDr,

I am sorry that you are going through what we are going through.
We at HW welcome you though and will do what we can to tell our stories and hope that some help comes your way.
The reason you were on Testosterone Therapy is because your T level was low.
I did not see anyone on this forum suggest that that might have been the original culprit all along.
New studies are showing that low T levels may possibly be the cause of PC since your entire system becomes weaker and more susceptible to diseases of this type. Remember T is what makes us healthy men and makes us men.
I have found no evidence that normal or higher T levels instigate PC.
If anyone on the forum knows of any reliable data that proves normal or higher T levels causes PC, then please share that data with me.
There are many of our brothers on this site that have T levels in the normal range and are still in remission and or cured.
More testing needs to be done in this area and we would all welcome some accurate data so we can get our libido's back.
When you started your T replacement I am sure your sex drive went up as well and you like me started to have more orgasm. Your PSA will naturally rise with more orgasm according to my urologist even if you do not have a prostate.
My current T level is 2363 and my PSA has gone to 1.5
I understand that my level is far to high and have abstained from taking more shots of T at this time.
I also will abstain from sex this time for a week before my next PSA and as usual it will go back down to <.5, it always has after abstinence.
I would never tell anyone what to do and you should listen to everyone at this point and try to make an educated decision, however without any documentation and only assumption for 80 years, you may want to do some serious reading.
I am glad that the T replacement made you feel better and hopefully you will continue to feel better with whatever decision you make.
Art
you can contact me anytime if you like with the email address on my profile.
I can provide links to studies that suggest that T has been misrepresented as far as PC is concerned but more studies are needed.

James C

My info is no prostate no rise in PSA after sex. The ONLY sources of PSA after RP are from prostate cancer cells that leave the prostate  and spread in the body to form mets, or from benign prostate tissue left behind but neither are  effected by having sex. Again I am no expert but that is what I know from my research. Maybe Sick's URO has some study to show this and I would like to know as well.

Terry

Wow, lots of info, lots of real life experiences and still lots of decisions to make. I'll try and respond to all of you that have caught my attention in one way or another. First I want to say that my personal physician that put me on the T was not negligent or carefree about the T therapy knowing my PSA was elevated etc. I was strongly advised by him numerous times to follow up with the PSA testing and the biopsy as well. Twice he wrote referral letters to my HMO so I could have them follow up. It was me that put it off thinking like most that I was healthy, no cancer history in my family, and just too busy to make it a priority. Even at the point of giving me the first injection he explained that I needed to follow up with the biopsy and that even though he was not in agreement the medical profession in general would advise against it. I still cannot say enough about the difference it has made in my day to day life. Hindsight is 20/20 and I'm paying for it now. Enough said about that.

This morning I was due for an injection and torn by all the incoming information I held off. After pondering the situation all day I decided to take the dose. Frankly at this point I have more faith in my personal physician than my assigned HMO urologist. I may change my mind by Friday when I'm due for another shot but in the mean time I am stressed to the max, confused about numerous things and having to confront this new life tragedy I want to feel as good and as strong as I can. I think without it, it would be very easy to fall into a vast depression. I'm scheduled for the bone scan on Thursday and until I get those results I think I will continue the T.

I want to thank everyone that has taken the time to share a part of your own personal fight with me. It has helped me look at this entire thing from another perspective. While the last thing I want is to lose my "ability to perform" it couldn't be said better than by the comment "dead men don't have sex". Thanks. That was an eye opener.

It's all a bit frustrating since at this point in my life I feel better than I have for years. All the parts are working, no hitch in my giddy up, all ahead full, till this. It's like I'm cruising around in a Ferrari and the Dr wants to put me under the knife and send me home in a Ford Falcon. I guess I have to accept that at some point we all have to give up driving for one reason or another. I'll keep you posted with the scan results.

Thanks again, and prayers for all of you.

My Urologist finally returned my call today. My question to him again was why does my PSA rise after orgasm. He elaborated on his original statement of not having a prostate and still producing PSA.
He explained that since I had radiation instead of removal it must not have been totally destroyed from the radiation that there was still residual evidence of a prostate. ( I was originally told that it was fried from the radiation and as flat as a small pancake)My PSA decreases after abstaining from sex. He told me no more sex. After we both stopped laughing, he explained that it was normal I should not be concerned unless it does not go down or continues to rise. In some cases people that ride dirt bikes and or experience a lot of vibration to the groin experience a rise in the PSA which is common, however if the PSA rises without instigating factors then they should consider seeing a uro.
So I stand corrected on my statement of PSA level changes even with out a prostate dues to sexual activity. My situation was not fully explained till I called him on the carpet about this.
Good luck DR.DR.
on whatever route you go with
Art

If you have PCa then you need to be on this site. I learn something every day and I get more hopeful that PCa can be eliminated. We have come so far in the last few years with treatment that there is hope and a lot of hope to prolong life that is livable, someday maybe a vaccination, just in time for our Grand Children.
I have been on testosterone for over one year. When my surgeon put me on testosterone he said for the rest of my life. I feel better, I don’t fall asleep at my desk anymore and I wake up with a “Woodie” once in a while. At 65 what more can you ask, better yet what would your wife permit? I asked a lot of questions before taking testosterone knowing that the “old school” thinking was PCa and testosterone do no mix. I had just cleared 36 months of “Zeros” and was not keen on changing that. I am now approaching 60 Months of “Zeros” and my doctor has taken me from 3 month checkups back to 6 month checkups. So far no problem and I trust my surgeon. (:
My PSA (4.4) at time of surgery and a Gleason of (3+4) with no capsule penetration made me a candidate for testosterone treatment. Don’t forget I was “Zero” PSA for 36 months. I don’t know what specs limit testosterone use but obviously there are levels that are acceptable and that is what our doctors are trying to determine. In my case I am 65 years young. I have an insurance life expectancy of 85 + or -. I have 20 years to live before I go into overtime and with the early warning of PSA I can live 10 years after cancer re occurrence, God Forbid. With the risk of stroke, heart attack, colon cancer and being wiped off my motorcycle at 75 MPH, feeling good with testosterone is in my case, a no brainer. Listen to your doctor and your spouse and look forward to living. God’s Speed.
Age 61 at diagnosis
PSA Jan 2006 2.8, PSA Jan 2007 3.7, PSA Jan 2008 4.4
DRE Normal, Biopsy positive 1 core in 10,
Clinical T1C, Pre surgery Gleason 3+4=7
Bone scan Normal, Cat Scan Normal
da Vinci robotic Surgery April 30, 2008, Fremont Nebraska
Post-surgery Gleason 3+4=7, Pathological P2C
Lymph nodes clear, Margins clear
Hospitals stay 2-days, Catheter out 10 days
1-pad a day for 3 weeks
Back at work 7-days after surgery, desk job
Both Nerves spared,
Post 48 month PSA-undetectable

I'm so sorry to hear about your diagnosis, but your bigger problem now is dealing with the cancer.

With a Gleason 9 (high risk of recurrence), your best chance at a cure involves a combination of androgen deprivation therapy (ADT) plus IMRT (radiation) plus a brachy boost to the prostate. ADT will stop all testosterone in your body in an effort to halt the growth and spread of your Gleason 9 -- which spreads quite easily. This means you cannot take testosterone now. I'm surprised your doctor didn't start you on ADT immediately. Alternatively, surgery may be an option IF you can have assurance that the cancer is still fully contained.

You should also have been sent for a bone scan (or an NaF18 PET scan even better if available). If that's positive, only ADT will be useful to you. You should also have an MRI to check for evidence that the cancer has broken through the capsule. If that's positive, surgery is not an option for you.

Good luck in fighting this. There are many men on this site who have found ways to maintain quality of life while on ADT.

- Allen

(...IGOTTABADCASEOFLOVINYOU)

Great screen name. And Robert Palmer was pretty cool too.

It's too bad we didn't jump on the support bandwagon for this guy. I hope he's still watching.

Tony

Hunter,

I started a new thread for you so you can tell us about yourself and so folks can say hello.

Welcome to the forum.