RP, Radiation Therapy and Lupron Gleason 9 Journey started just over a year ago. New to Forum

Hi. New to the Forum. I was diagnosed with Prostate Cancer November 2020. Was originally diagnosed with Gleason 8 still inside the prostate. Pathology report following my RP surgery showed 5 + 4 Gleason 9 with seminal vesicle invasion and cancer in one out of eleven lymph nodes examined. RP was followed by Lupron and 40 IMRT treatments. My first post surgery PSA was 0.05 and every one since has been the same so far. I remain on Lupron every 3 months, just having my 4th injection in January. I have drastically changed my diet and exercise like crazy. I have found a lot of encouragement and answers from reading this forum and felt that I should stop just reading and join. Hopefully I can offer encouragement to someone else. God Bless.

Hi Jim and welcome to the Forum! Although you were delt a very difficult hand, IMO you've chosen the best treatment for very high-risk disease. Perhaps you could create a signature file with the salient info you have in your post along with your age at diagnosis plus your PSA/exam/biopsy/imaging history.

I suggest you follow your PSA with a 3-decimal ultrasensitive test such as Labcorp's.

All the best to you.

Djin

Jimlion - Welcome and don't worry about the string of 0.05's too much. The true test is months after the Lupron is stopped to see what your true baseline is in your normal state.

You might want to check what the lower sensitivity limit is of the PSA test that is being used to insure that the 0.05 reading is a measurable value and not a lower limit value. Given all the treatment you have had, no need to worry about anything for a while as your PSA has to get much higher before any other measures would be considered (in my opinion).

Thanks for the input and well wishes everyone. More info: PSA 16 in late October, 2020 at 62 years old.. Had Had MRI which indicated 4 abnormal areas of my Prostate. Followed up with MRI guided biopsy which showed 6 out of 16 cores with Pca. Had CT and Bone Scans which were both clear. RP was on February 5, with pathology showing 5 + 4 Gleason 9. RT and ADT followed. The 0.05 PSA is functionally zero according to the sensitivity of the test. 0.05 is as low as this one goes according to my Urologist, so I am happy. Will be glad to get off Lupron, but will continue it as advised. As long as I can avoid the bad side effects with vigorous exercise and diet, it's not that bad. Hot flashes mostly.

At 0.05 PSA, top of line PET scans probably won't find anything.
The limit for best scans out there are in the single digits past the decimal place. ie 0.50 , much better at >1.0

Welcome to the group Jim... I too went into surgery with an MRI guided biopsy indicating G8 which was prostate contained. But when the surgeon got in there he found that it had spread to the seminal vesicles. Fortunately all 11 lymph nodes were negative and pathology confirmed G8 throughout.

I was on Lupron for about two years starting five years ago, suffered hot flashes and was very emotional. Venlafaxine 75-150mg has helped with both. My testosterone never recovered after the end of ADT and I've not had any sexual interest in those five years, which in some ways has simplified my life. Still have the occasional hot flash, generally in the evening and overnight.

As mentioned previously, you should probably pursue the lower limit of your PSA tests. Some doctors & nurses are quick to call a PSA below the lower limit to be "zero", but that just isn't so. I always demand the exact value in that case. The tests I am familiar with have a lower limit of 0.02, 0.014, or 0.008 and have never seen 0.05 so you should check into that.

Good luck to you. Hopefully since you were able to start ADT and ART soon after surgery then you have hopefully eradicated the cancer in time.

JimLion,

Sounds like your team is on top of things!

I didnt see it mentioned previously but to help protect your bones during ADT I was asked to start taking a combined calcium/vitamin D supplement

Citrical Plus

https://www.citracal.com/

The nurse at the RO’s office specifically recommended Citrical because the calcium formulation in that product absorbed better and reduced the chance of kidney stones.

Great that you are exercising! Walking that far each day represents and is in fact a commitment.

Jimlion said...
One thing that I am concerned about is being on Lupron for 2 years. Rob, did you have more problems the longer you stayed on Lupron, or was it pretty consistent? The main problem I am having now is hot flashes.

I would say the first few months were the worst. After that I learned how to adapt. I would only wear button down cotton shirts so I could open the front. Also I bought several folding Oriental fans on Amazon and try to always have one with me (including by my bedside). A wide brim hat or some papers would suffice in a pinch. I have fans everywhere in the house and bought remote control adapters also on Amazon so I could control the fans with a single remote.

Probably the most significant step was getting on venlafaxine. My RO refused and prescribed Megace, a synthetic female hormone (progesterone). My GP did not want me on that as he said it can cause blood clots. I'd say the venlafaxine has reduced my hot flashes by 50%, in intensity as well as frequency and duration. But once on venlafaxine it is difficult to get off. My low T had caused me to become very, very emotional and depressed, but that ended 2-3 years ago when the Lupron began to wear off and my testosterone gradually got up to 50-60, which is still very low, but enough to stabilize somewhat.

I had learned about this med here on HW and it looks like I'll probably be taking venlafaxine (Effexor) for the rest of my life. It is a small price to pay for the serenity and stability that I have achieved over the past five years, especially after the hell I went thru during the early days. Good luck to you going forward.

Thanks Michael. I am doing well. I feel good and have a really good medical team. I have a wonderful wife and God is good. This forum is really a blessing. Reading all the input and experiences from guys who have been down this road means a lot. Thanks.

Jim, just curious about the calcium supplements. My Uro wanted me to have a Dexa scan to see where I stood three months after starting ADT to check for Osteoporosis. It was positive and that was when I was told to start the calcium. it was also suggested that I start every six months an injection of Prolia to help with calcium absorption. At first I balked, because of the SEs I heard that could occur. After asking questions here, I saw where some had been getting Prolia injections for a long time. I believe Cyclone stated that as well. Just curious, has anyone suggested a Dexa scan to see if you have any indication of Osteoporosis or the need for Prolia. My best to you,
Jack

FWIW, I looked into Prolia when I started ADT but my oral surgeon said he would not even work on anyone who has had Prolia or any Bisphosphonates. I've had extensive dental work (~$60K) since around the time I started radiation. I've had biannual DEXA's as I have been osteopenic for a couple of decades now and am at the bottom end of the "normal" range for my age. The risk of ONJ nixed Prolia and because of a severe orthopedic injury in 2005 I am just very careful where I walk. It also limits my physical activity. I figure keeping my teeth is more important than being able to jog.