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I want an orchidectomy...

SwampLife
Posts: 12
Joined: Oct 2016

I want an orchidectomy and have asked my doc -'are the side effects of an orchidectomy the same as with lupron?' he gives me his stare until he gets up and leaves. He is a great doc but wants only one in the room at a timeSmile.

So I ask yall   are the side effects of an orchidectomy the same as with lupron?  meaning does one have hot flashes, extreme fatigue, evil moods, nightmares, constant thoughts of death and destruction, in ability to think, reason,, to care, to live, etc etc.

My inspiration is that the great eunichs of history seemed to do alright. I want the testosterone gone period. There is no concern about functioning as a man now or ever as they have taken that away from me since 2010 and you get used to it.

Please mention your opinions on side effects of orchidectomy  Thanks

 

Old Salt
Posts: 720
Joined: Aug 2014

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.

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

No one can predict what your outcome will be, however, I will share my ideas.  At 81 a routine exam discovered a psa of 300 and multiple widespread matastasis.   I was a competition body builder at the time and was injecting testosterone twice a week.  The treatment I chose was castration and bicalutimide suggested by my Phillippino doctor.  So, I had a very severe cutoff of testosterone, and I suffered greatly for one year.  Then I stopped the Bicalultimide on my own, and almost immediately improved.  I had lost 35 pounds that year, but as soon as I quit HT, I started to gain weight, the side effects lessened.  Now, the only side effect I have from the castration is hot flashes which are not severe, and I am bodybuilding again at 85.  A year ago, I went to a prominent Uro in Singapore who told me he would NOT have given me the bicalutimide after castration. my conclusion is that for me, I would only do the castration.  The side effects would have been much less in my case.  I had very bad side effects from HT, others seem to tolerate it.  At any rate, best of luck to you.

I would like to add that I received many spiritual gifts from the castration as well as from the Stage 4.  My wife is very young and beautiful, but a very poor philippina who had to marry for financial security, and my side was a lot about sex.  With the dropping of sex, our relationship was no longer based on sex and security.  She is now financially independent and could leave me.  She is 29, and everyone wants her.  We have a real love bond together now and stay together for mutual love and spiritual growth.  It is not easy for her here in the Philippines because in Davao, where we live, there is a lot of prejudice against a young Pinay with an old Farang.  So, my point is that IF you are open an look for your spiritual lessons not only in the castration, but also in the cancer itself, there are great gifts to be found.  I just saw a story about a high school athelete who went blind.  After ten years, he was asked if he wanted to have his sight back.  He replied, no, not right now.  The blindness has been such a gift for me that I want to keep it longer.  Nothing comes into your life that is not for your benefit.  If you see it that way, you will prosper, and possibly heal.  If you reject what you are given, you will suffer from that negativity and accelerate the process of physical decline.  Celebrate any life you have, life is such an incredible gift, even if there are only a few months left.  All is perfect.

Love, Swami Rakendra 

Will Doran
Posts: 207
Joined: Sep 2015

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
Posts: 6
Joined: Dec 2016

http://jamanetwork.com/journals/jamaoncology/article-abstract/2476248

check out the above abstract. It concludes thatt Gondotropin-releasing hormone agonist therapy is associated with higher risks of several clinically relevant adverse effects compared with orchiectomy. 

In the Discussion section of the full article is the following: "..Primarily, our findings indicate that GnRHa was associated with significantly higher risks of fractures, peripheral arterial disease, and cardiac complications compared with surgical castration>"

Your local library (interlibrary loan) may be able to order a copy of the above JAMA Oncol article titled, "Comparison of Gondotropin-Releasing Agonists and Orchiectomy Effects of Androgen-Deprivation Therapy."

 

Good luck, I am checking out the same thing.

Will Doran
Posts: 207
Joined: Sep 2015

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 Doran
Posts: 207
Joined: Sep 2015

ZetB1

Since was last here, My blood work came back and my PSA has now come up from <0.010, then to 0.035, and now up to 0.145.  My testosterone tests aren't back as of yet. They take longer.  So, on Jan. 9th I'll see my Urologist and we will discuss what comes next. He may want to hold off for a bit.  I guess we'll see. If he wants to put me back on Hormone Therapy right now, I'm going to talk long and hard about the options.  We had already agreed to doing an Orchiectomy two years ago.  So, If my doctor is still of that mind set, Then I will proceed, if there isn't anoither alternative that will really help me at this time.

Love, Peace and God Bless

Will

ZetB1
Posts: 6
Joined: Dec 2016

I am glad you are sticking to your guns to get an Orchiectomy.  Take Care of yourself.  Zet

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

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

VascodaGama's picture
VascodaGama
Posts: 2966
Joined: Nov 2010

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 Doran
Posts: 207
Joined: Sep 2015

Where to start?

Rakendra- Thank you for your suggestions.  I have cut way back on red meat.  Eat lots of salads. Breakfast is whole grain German Style Muesli with no sugar and skim milk. Lunch is a slice of my wife's home made whole grain bread.  She puts coffee and chocolate and lots of different kinds of whole grain, seeds, and barley, whole wheat, cornmeal, flax, wheat germ, and oats in the dough.  I like that bread toasted until very dark, with Cream Cheese, olives, walnuts, and either raw onion or Jalapeno Peppers, And an Apple with Peanut Butter.  That's lunch. Supper?  A salad,  small serving of Steamed Veggies, very small piece of meat, if red meat, just venison, or either fish or chicken.   And yes--Willy? Your description is perfect.  My biggest problem with the Lupron had been the joint and muscle pain / aches.  Then, by adding Prolia for bone density, that has just made the arthritis in my right hip worse.  I just had my appointment with my Chemo Oncologist, and she says the Prolia side effects are what I'm dealing with.  She said the side effects from the Lupron are as I said, and yes that the side effects are little less from Orchiectomy.  However, bone density is still a concern, and heart conditions can happen.  At times my left hip and shoulders also have some aches, but that goes away and stays away most of the time.  Some of that depends on how hard I push with the weight lifting and spinner / trainer bike. 

VG,  I have my 4 month check up tomorrow with my urologist / surgeon.  We will go over my tests.  His concern, and the same from my Chemo Oncologist, is the rate of the increase in PSA.  As you stated, he said we would get concerned when my PSA hit 2.0.  However he wanted to really monitor the rate of increase.  My Chemo Oncologist said the same thing, that it was the rate of increase they would be watching .  We talked about intermitent HT.  Also, this is my second increase in PSA. My doctor said he was hoping it would settle in, and also told me as the Testosterone levels settled in,  hopes where that my PSA would do the same.  My Testosterone level test came back after I wrote above posts.  My Testosterone level increase has slowed down at this time.  I was at 17 while on Lupron.  Then it went to 135 after being off Lupron for 3 months, then 4 months ago my "T" was a 320 (I had 350 in the earlier post, mistake on my part), now as of last week, my "T" is a 380.  So, I looks like it's settling in, as Dr. Miller was hoping.  He had told me that after being on Lupron for two years, My "T" level would probably not go back up to where it was earlier in my life.  However I never had a "T" Level done, so I have no idea what my "normal" was.

Since being off the Lupron for over a year now, I have gained 15 pounds. I'm 6 feet 2 inches tall and thus can carry that added weight.  I was told the Prolia (for bone density) will cause weight gain.  Plus since my Testosterone is back up. I'm building muscle mass like crazy.  I was working out at the gym on machines.  I decided I was gaining too much mass, like I used to do, so I decided to stick to free weights, and lighter stuff I can do here at home.  When I was at my Chemo check up last week, as my doctor was poking and pounding around, she commented about how "hard" my muscles were getting.  She said that was why I've gained weight. My Dermatologist also commented on how "hard" I was getting when I was in for my Melanoma check up two weeks before that. Of course, she is a former student of mine, and she and I have some good laughs, as you can imagine.  Especially when she is checking the lymph nodes in every imaginable place.   Yes, Rekendra, there is a 6 pack under there.  However mesh from a double abdominal hernia repair doesn't allow it to show as much.  I can feel it, but the definition doesn't show like I'd like.  VG, We will talk at length, tomorrow about the future.  That's the plan, and no we aren't jumping into any thing without knowing all the effects.  I had resigned myself to the possability, two years ago, that I might need to have an Orchiectomy.  However my two doctors at Urology decided we'd try two years of Lupron first and the see what happened.   Rekendra,  After being on Lupron, yes I understand what you mean about " many incredible spiritual gifts".  Unless a person has been there I think it's hard to understand.  I think the feeling of "being at peace", was my biggest like.  However, now that My Testosterone is back up, I'm torn between which way I want to be.  Now that my body hair has all come back, my beard grows fast again, etc, My wife sort likes me better this way.  In fact she begs me not to shave at times.  And that's a thing I owe her, as well.  She's been so good with me through all this, and my biggest "cheer leader".  However she has also resigned herself to the fact that we will have to do what we have to do.  I'm hoping to get another 4 month reprive from making any drastic decisions, tomorrow.  However we are concerned about the rate my PSA is coming up.

Thank you to both of you for listening and for your thoughts and concern.  I hope others who read this will get a feeling for what we all go through during this battle.

Love, Peace and God Bless to all

Will

VascodaGama's picture
VascodaGama
Posts: 2966
Joined: Nov 2010

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 Doran
Posts: 207
Joined: Sep 2015

VGama,

My Surgery was in Dec. 2013.   I had my first Lupron shot Jan. 14, 2014.  It was a 45 mg 6 month shot.  Then a second 6 month shot.  Then my Chemo Oncologist thought those shots were too strong, because of the side effects I was dealing with, so she suggested to my urologist that we switch to 4 month shots.  Which we did.  Then I had  three 30mg 4 month shots.  My PSA held at <0.010 throughout that time.  My Last Lupron shot was Oct. 5 2015. It was a 30mg shot.  In May of 2016 My "T" was 134 and my PSA was still at <0.010    Then in September 2016 my Testosterone had come up to 320 and my PSA was 0.035.  Two weeks ago,  Dec 28, 2016, my Testosterone is at 380 and my PSA is at 0.145.  My doctors had talked to me about Intermittent Lupron.  I think one month shots were mentioned and then trying 3 month shots.  As you suggested.  My doctor also mentioned taking Lupron in pill form, every day. There were also a couple other pill forms of HT he mentioned.  Then, one drug, don't have the name, was just approved and he was in on the clinical trials with some of his patients and they had really good results.    This is what we were going to talk about yesterday, but my appointment was moved because my doctor was called to emergency surgery.  So, I have to wait until Jan 27th to talk this over.  Just another 2 1/2 weeks of waiting to see what is going on.   My wife and I don't remember what was said about when we would start doing PSA tests closer together.  I may have heard that from My Chemo Oncologist.    I seem to remember that one of them was talking about three week PSA tests to check rate of increase.   Then if it hit 2.0, we'd start Hormone Treatments again, with intermittent shots.  We try to write all this down, but sometimes we get things mixed up.  Many times it gets to be a information over load.  However my doctor takes all the time in the world to answer questions.  He's always behind schedule becasue of that.  We have a bunch of questions written down every time we go in and I get to ask all my questions.  That is what I was ready to do yesterday.

Thanks again for your input

Love, Peace and God Bless

Will

VascodaGama's picture
VascodaGama
Posts: 2966
Joined: Nov 2010

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 Doran
Posts: 207
Joined: Sep 2015

VGama,

You are right.  I don't think there is Lupron in pill form.  I guess I'm so used to saying Lupron and using that as the name for all HT medications.  Casodex was one pill form my doctor mentioned and there were other names he threw out.  However we really didn't talk at length on that 4 months ago.  That is what we were going to do at my appointment that was rescheduled.  As my wife and I talked more about the past, I rememebred that my doctors had told me that since I had been on the Lupron injections for two full years, that it might take over a year for the drug to work it's way out of my body.  So, what you are saying goes along with what my doctor had told me. So, two more tests seems to be what would be done.  Thank you for your input.    I thought of that after I wrote back yesterdsay.  Back at the time of my surgery, and after surgery, My doctor kept telling me that my cancer was aggresive. He always kept it real and still does at this point.  He reminds me of that every time I'm in for a check up.   As I have said, My post surgery listed me as a Stage pT3bN1.  The only spread was a very small spot (too small to show up in my MRI's) in one lymph node in my right groin.  My doctors said they were going to be very aggresive in treatment and said they would treat me as if I were a Stage 4. I started out with a PSA of 69, and Gleason 3+4=7.  I had no symptoms of Prostate cancer.  If was found by accident when I had an internal bleed.  The bleed was caused, they think, from damage from a cycling accident where I was hit by a truck and left laying along the road.  I don't remember the accident. There are 7 cracks in the helmet I was wearing.   The driver kept going and another car stopped and got help.    So, They said my cancer was aggresive, and they had me on the Lupron for two years, and I had 8 weeks of radiation to the Prostate Cavity as clean up. 28 regular treatments  followed by 10 "Boost" treatments to the area where the lymph node had been.  Those boost treatments were stronger, and more directed, As I understand it.  That is what is now causing the bone density problem and the discomfort in my right hip joint.  I suspect I'm coming up on MRI's in the near future.  That was mentioned this past fall at my Chemo Oncology Appointment.  If that will be as before, any other suspicious places will show up, because of the injections they gave me before they ran the MRI's. They called it MRI with Contrast Imaging.  They gave me shots of radio active (I think) fluid.  I had to wait a coupelk hours adn then goiback fro the MRI.  Some times they would take the MRI, then inject something in an IV and do the MRI again.  So, I'm not sure which one made the prostate cancer show up.  all I know is my prostate was bright red in the images my doctors showed me. 

OBTW, congratulations on your PSA going down some. That news gave me some hope.  That's great.  I wrote to you on your other post.  If I may ask----- as Your testosterone has come up and down, do you have pain in your testicles from time to time?  I do.  My doctor said it's from the change in hormones.  The pain had slowed down when My "T" level was at 17.  Now as I'm back up in the "normal" range, I have pain from time to time. 

Thanks again

Love, Peace and God Bless

Will

VascodaGama's picture
VascodaGama
Posts: 2966
Joined: Nov 2010

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 Doran
Posts: 207
Joined: Sep 2015

VG

I do have a hernia on the right side.  It is so open that it goes in and out without any pressure.  When I lay down it slips right back in on it's own. There was a small hernia there prior to my surgery.  My doctors knew that.   This larger hernia was caused during my robotic surgery.  My Doctor told me this would probably happen.  In fact he told me that at 10PM on the night of my surgery. The reason was that he had trouble getting to the lymph nodes in my right groin, because of the muscle mass in my thighs from hard, heavy road cycling.    The Hernia has been checked, and my surgeon was going to have it repaired when we throught we had a cyst in the prostate cavity.  My Chemo Oncologist saw that cyst in MRI pictures.  Plus the hernia is in the same area.  They both showed up on the scans.  Turns out the cyst went away on it's own. Which my surgeon said would probably happen. My surgeon was going to "poke a hole" (in his words) in that cyst, and then have another surgeon fix my hernia at the same time using the robot.  They were going to work together on this.  However the second surgeon was afraid that I had already had too much time (5 1/2 hours) of robotic surgery and said he would rather do the hernia repair the "old way", or wait until a later date..  The testicular pain, well it's not really pain, it's sort of a dull ache, much less than if you were hit in the groin, comes and goes.  It may be Torsion as you suggested.  It gets worse when I do my leg presses and some of my weight lifting.   And if I'm standing up on my spinner bike hammering away at a high tension setting as if I were climbing a hill on a road bike.   It is on the right side.  That is where the lymph node that had a very small spot of cancer in it was located.  That is where my doctor had trouble finding the lymph nodes, and I think the "Boost Treatment" (radiation) was aimed.  That right testicle has atrophied to the point that it is very, very small.  In fact it is hard to find at times.  The left side is normal.  All looks normal from the outside.   It feels like there might be fluid in the right side, thus all looks normal.    I'm going to ask about that when I go to my next appointmant.  My doctor said that becasue of the radiation and the lenght of time I was on Lupron, that some of this might occur. 

Thanks for your input.  What you have said goes along with my thoughts and what we have talked about with my cdoctors.  I did read on here, somewhere, that another person was having pain in his testicles after surgery of treatment.  But I'm not sure who or where that post is located.  It might have been mentioned by the guys wife or the guys daughter.  I forget. 

Thanks again

Love, Peace and God Bless

Will

VascodaGama's picture
VascodaGama
Posts: 2966
Joined: Nov 2010

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

Will Doran
Posts: 207
Joined: Sep 2015

VG,

Thanks for the link and the info.

I will bring this up again when I go in for my check up

Love, Peace and God Bless

Will

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