I want an orchidectomy...

Side effects from hormone therapy vary a lot. Some men have mild issues but others have more serious problems. These are largely due to the lowering of testosterone (to 'castrate level'). Removal of the testicles gets rid of the main source of testosterone production. Hence, similar problems as with hormone therapy. This statement is from reputable sources of medical information. I recommend that you look it up as well.

As an aside, I imagine that orchiectomy (which can be done on an out-patient basis) is likely to be a lot less expensive than long-term hormone therapy.

Swamp Life,

I'm a three survivor of prostate cancer as of December of this year.  I was on Lupron for two years, post surgery.  At one point I wanted to do the orchiectomy instead of continuing with the Lupron.  However my two Urologists decided I should try another year of Lupron and see what happened.  The normal side effects of ADT (Hot flashes, loss of muscle mass and weight gain, etc.) are the same, as I was told.  However I had terrible leg muscle and bone aches while on the Lupron.  They told me that those side effects would not be as much of a part of the side effects of an Orchiectomy.  My trestosterone had been at 17 for two years.  Normal is 250 - 1,100. I can't say that I liked the feeling but adapted to not having testosterone levels at a normal range. Swami has given you a good description of his situation.  His story has put me more at ease with the possability that I might have to have an orchiectomy.  I read his story two years ago and that has really helped me.  I've been off the Lupron for almost 6 months at this point and my testosterone is back up to 320, which is in the lower end of the normal range.  I have more blood work in two months to see whether my Testosterone is higher and whether my PSA is getting higher.  My PSA had been at Undetectabe levels since my surgery.  It had been at <0.010, but since my testosterone is up my PSA is now at 0.035, which is still where my doctors want it to be. They told me this would probably happen and it has.   If it comes up higher then we will have to decided on another ADT Treatment.  Intermittent Lupron has been suggested, back on Full Lupron has been suggested,  but we have also talked about Orchiectomy.  I can actually say that at times while on the Lupron I was more relaxed and wasn't as prone to "flying off the handle"  Now that my testosterone is coming back up, I find myself getting upset with dumb drivers and people who do down right stupid things.  Especially those who have no concern or sympathy for others. 

So, I can only tell you what I experienced while on Lupron.

You will hear from others, I'm sure,

Love, Peace and God Bless

Will

ZetB1

Thanks for your post

I was 67 years old when diagnosed. A Road cyclist and weight lifter.  I continue to ride stationary bike and weight lift daily.   I had a PSA of 69, Gleason of 3+4-7.  After surgery (Dec 2013) was listed as a pT3bN1 after surgery pathology.  My doctors suggested I read a JAMA article / study, about 2 year ago. It may have been an earlier one then the one you suggested.  It talked about the same information that is in the article you listed.   I will see my doctors, starting tomorrow (12/28) for my regular check ups.  I see my Chemo Oncologist tomorrow.  She has me on Prolia for bone density.  As I was told, when they gave me that article to read, I am a candidate for femur fractures because of bone density loss from the Radiation and the use of Lupron for two years.  We actually where ready to do an Orchiectomy two years ago.  I had resigned myself to that at that time.  Then my two Urologists / Surgeons talked to me and they felt we should try to finish out the two years of Lupron.  As I've been on this Prolia for over a year now, my leg weakness is getting worse at times, and I have had an increase of arthritis pain in my right hip.  No signs of cancer in my bones, so far.  I was told that by having an Orchiectomy, instead of continuing the Lupron, some of the dangers of femur fracture would be lessened.  As is stated in the articles.  I will have full blood work done tomorrow and then see my Urologist next week.  My PSA had been holding at <0.010 for over two years.  I went off the Lupron almost a year ago, and my PSA is still listed as undetectable.  However it has come up to 0.035 as of four months ago.  My Testosterone had been clear down to 17.  After being off the Lupron it was back up in the normal range (250 - 1,100) as of 4 months ago.  My"T" level was 350.  I am feeling better and if it weren't for the Prolia side effects, I'd be feeling great.  However, If my blood tests show that my PSA continues to rise, then we will have to make decision as to my future treatments.  At my last appointment (4 months ago) my Urologist said he would be ready to do the surgery if we decided to go that route.  Hopes are that we won't need to do the Orchiectomy, but if needed, I am fully prepared to go that route to keep this beast under control.

Thanks again

Love, Peace and God Bless

Will

Will, I had a very bad year the first year after orchiectomy and bicalutimide.  But I was using Roids twice a week at that time, and one is not supposed to quit roids cold turkey like I had to do, so maybe my bad time was worse than usual.  I stopped the bicalutimide on my own because I was sick and tired of the side effects, and almost immediately improved.  My top doc in Singapore said he would not have given me the bicalutimide after the orchiectomy, so you need to be aware of this.  I do not like to put anyting in my body that is not natural.  I think your weight lifting will really help you to not have fractures.  I am  on a ketogenic diet for two weeks.  It is 70% fat and 20% protein and 10 carbs.  I have lost two inches off my stomach, but still maintain size and weight, and I have a nice 6 pack.  I think by my contest in March, I will really be ripped.  For most cancer Keto is great as it eliminates all sugar.  But if you go Keto, forget about ever enjoying a meal, although I enjoy my evening salad and fish.  My pre-workout drink is decaf coffee (only because I do not like caffeine, which would be fine for most), a big slab of butter, a dollop of cream cheese, some heavey cream, and some Virgin Coconut oil.  I am doing 76 reps ala Matrix and now weigh 200.  I really think this year will be very special for me.

     Anyway, Will, it looks to me like you are going to have a long life ahead of you.  Also, losing my balls gave me many incredible spiritual gifts, but it is easier to go ball less at 81 than at your age.  However, my Willy is no longer a Willy. It is now more like a Caterpiller.  Love, Swami Rakendra

Rakendra,

You made me laugh with this post. I am always eager to read your insights in regards to the deep meaning of life and your suggestions in spiritual principles and now you show me another healthy quality that is laughing. There is a lot to learn from you (my senior friend) but, can I reach 81 and experience the same? Not so sure of that.
The Caterpillar concept took me by surprise. No doubts that in comparison with the Willy it shows higher defenition. At least one can image what one could see. Lol.

I am please to know of your next contest. Best wishes for a higher qualification. Being active mentaly and physically, is your best shot into wellness. I wonder about the diet. Is it real good if fat (70%) is the main component? What do your lipids say?

I am confronting sort of Claudication and have no clue how to deal with it without meds. The cholesterol level is good meaning that the problem is localized to the lower legs. Symptoms started about six months ago with intermittent pain at both heels after rest. Sometimes it is accompanied with leg cramps which I related to the daily walks (with my dogs) or a cause of my gardening activities in ploughed land but this is winter now and no gardening has been done.
When under HT influence, I experienced occasionally sort of arthritis in all joints. Those are gone. The present feel is different. It seems like that will be here for long stay.

A note to Will Doran; I am sorry if the PSA has increased, however it is still earlier to decide on anything. Do not rush without knowing details of your next step. Controlling cancer advancement after failed radicals can be done with ADT intermittently which provides longer periods of control. Orchiectomy is not free of symptoms and it would not allow an intermittent approach. In your case recurrence is considered at the third consecutive increase from a nadir. The continuing treatment should follow a defined protocol with threshold markers (usually the PSA) defining the times of therapies. In my case it was a PSA=1.0 for the first "trigger" and then PSA=2.5 ng/ml for the following trigger thresholds. Discuss the matter with your oncologist and do nothing drastic just for desperation.

Best wishes to all,

VGama

Will,

I tried to check your PSA histology in regards to the times of HT influence and the testosterone variations, but you have dropped your story in so many threads that I can't find these data.
The doubling in increased PSA is important, however the data used in such a judgment starts from a real nadir. This is the threshold you must find to estimate your PCa present status. In other words, PSA numbers under the influence of HT should be suppressed from the collection of numbers that will evaluate your next step. Most probably the nadir value of <0.010 was still under the influence of HT which turns this result not the real PSA nadir. Even the following value of PSA=0.035 (T=?) may be a masked value. The last result you indicate above PSA= 0.145 ng/ml (T=350 ng/dL) could very well be the first truthful nadir if the previous was still under HT influence. I wonder the dates of last Lupron administration and its dose, when timing it with the PSA.

Typically, recurrence in SRT is designated after three consecutive increases after nadir (the real value) taken in tests done at least three weeks apart. Starting from this period the doubling (PSAdt) is also used to verify aggressivity of PCa cells causing the progression of the disease. This is a necessary factor for some doctor's judgment because one does not know the exact Gleason pattern of cancerous cells left behind (after dissecting the gland). I recall that my PSAdt was 9.5 months (0.8 years) with a PSAv=0.02 ng/ml/month (0.21 ng/ml/year). This is the lower limit in low aggressive cancers. Better is a threshold of PSAdt=14 months.

Our cases shouldn't be compared but for your information, from the above data my onco established the trigger for ADT in a threshold of PSA=1.0 ng/ml. This number was reached approximately 33 months after nadir (about 4 years since SRT). I started IADT/HT in November of 2010. The protocol was established for intermittent periods (on/off) of administration of HT drugs; being the length of the ON period represented by one year in remission (PSA<0.05 ng/ml), followed by the OFF period till PSA climb reaching 2.5 ng/ml. This will be the trigger threshold to restart ADT.

The Remission period on my first ON drugs was longer than the required one year lasting 18 months. This was achieved with 3 shots of leuprolide (Eligard 6 month x 3 equal to Lupron). This drug kept me in chemical castration during 22 months (T< 30 ng/dL). When T climb to normal levels of 252 the PSA accompanied and became out of remission levels at PSA=013. 
You can read details on my experiences in the links of this thread; http://csn.cancer.org/node/290854

I believe that IADT (intermittent androgen deprivation therapy) would work for you because your cancer demonstrated to respond to Lupron. Probably you could give it a try with smaller doses of Lupron (one month shot) and later increasing to 3 month shot. If your oncologist agrees I would try being one year in remission level (PSA=<0.05 ng/ml) and then stop the drug.

In any case you need firstly to find your real nadir.

Best wishes,

VGama 

Will,

From the above info I think your real PSA nadir is 0.035 ng/ml (T= 320 ng/dL) in Sep 2016. It could be a lower value but you did not get tested. The second PSA is 0.145 ng/ml (T= 380 ng/dL) in Dec 2016. You need two more tests to verify and confirm recurrence. These tests should be done apart at least over three weeks (longer is better: eg; every 3 months).
Surely one can already believe that recurrence has set in and start treatment, because you have no prostate in place, but there have been cases where bounce was present (in particular, in combination therapies). It is also true that the PSA variation was tiny (0.04/month) in spite of the high testosterone (both numbers well above normal) which suggests a slugish progression. Either the existing prostatic cells producing the PSA serum are benign or are cancerous that could be non-aggressive or those of the type that produce lesser amounts of PSA.

You do understand that it is imperative to wait and follow coordinately and timely to verify credible PSA for judging your actual case.

I am not aware of availability of Lupron/leuprolide in pill form. Maybe you mistaken with another drug. A traditional HT pill for PCa is the antiandrogen bicalutamide (Casodex). This is easy to take daily (50 mg) and in certain patients manages to substitute Lupron in the treatment. These two drugs work differently so that they can be taken together when the case so requires to hold the bandit (aggressive bandits). Some of the side effects of bicalutamide are similar to leuprolide but bicalutamide cause lesser symptoms. The one month Lupron shot also cause lesser symptoms than the 4/6 months but many guys feel discomfort for having constant shots (twelve in one year). The Lupron three-month shot seems more convenient and achieves the same results. Another LHRH antagonist is Firmagon administered monthly and claimed to cause lesser side effects than Lupron. You can investigate on these drugs and discuss with your doctor for details.

I wonder about the trial drug your doctor is holding. As far as I am aware these trials are testing the so called second-line HT drugs. This could be a good choice for you as it is free and safe and surely good. However, for the moment, your case may do well with traditional HT drugs (Casodex, Lupron, etc) so that you can reserve those second-line ones for future administration when the first fail. You should consider that all of them are palliative so that one should consider tactics that control any advancement of the bandit during many years.

Intermittent approach is the best method allowing periods of quality living free of drugs effects and free of symptoms. Your doctor is recommending a trigger PSA threshold of 2.0 which may be appropriate for your case. In any case you should define this threshold after definite analysis of cancer aggressivity (PSAdt).

In my PCa case, I am systemic but I still procure cure. I am guessing that the sluggish behavior of my cancer could relate to a fewer number of metastases (known as oligometastases). This condition can be successful treated with spot radiation if the bandit is located at convenient spots where the previous radiation did not reach the limits of absorption (different tissues have different radiation absorbing properties). To such purposes I want to try locating the cancer hideaways with a PET scan (68ga PSMA). This must be done while free of HT drugs effects, therefore, before I reach the trigger threshold PSA of 2.5 ng/ml. I am working for that to happen. You also could try this oligometastatic treatment locating the bandit before starting HT.

Please note that I am not a doctor so that you should follow your instints and get second opinions for your next steps.

Best wishes in your continuing journey.

VGama

Will,

HT never made me pain in the testicles and I never heard of such experience by others under HT therapy. Please note that Lupron action is not in the testicles but at the pituitary. I wonder about the intensity in pain you are experiencing. Some feeling due to testis activity could exist but pain is different. Maybe you need to consult a neurologist. More over, I wonder if you are considering orchiectomy just to get over this problem. Don't do it.

A common cause of testicle pain is indirect inguinal hernias. These are common findings and occurrences pos prostatectomies. I also had one just before my RP which should be treated during the prostatectomy but was forgotten by my surgeon (he told me latter). I never treat it and it never bodder me again but this is a condition easy to be treated. Torsion of the testis is also a condition that goes unnoticed and may cause pain. The best is a massage done with the intention in verifying the testicle position in the scrotum and at the same time to feel any bump (presence of fluids) that could be the related cause.

In any case, the aggressive treatment you had for PCa was not a walk in the park. I believe that it is behind several of the symptoms you are experiencing. The positive lymph node finding could have directed the radiologist for a wider plan that could have included lower abdomen field of attack, even affecting the nerves leading to the testis.

It would be good for you and your future treatments (if any) to have the details of past exams and therapies. The contrast agent used in the MRI exam can provide a clue of what was treated by radiation. Data on the radiation dose (Gy) and its field is important for future spot radiation. I recommend you to collect and keep a file on the information so far collected.

Best wishes,

VG

Will

Yes, you need to inform and get details from your doctor. Do not allow him to brush the problem off with just a smile or an "I do not know" answer. He can inquire easily one of his uro colleagues (expert sexologist).

A note on LHRH agonists action; Lupron job is to cause havoc at the pituitary flooding it with "Down Regulators" (LHRH hormones) so that the gland stops sending down signals (orders) for the testis to produce testosterone. Without these orders the testis stop functioning, becoming just a soft tissue spongy like small balls (mine became like two playing marbles). These easily are buried into the outer skin and get twisted in the scrotum. Once the pituitary returns to normal function, sending the "down regulators", the testis start being active (producing testosterone) and gain the normal shape increasing its size inside the scrotum. At this timing something could go wrong (torsion). Massaging the testis may put them into the right position.

http://www.prostate-cancer.com/prostate-cancer-glossary/Pituitary-Down-Regulators.html

Best,

VG