Question, this is something know one has mentioned to me. Is it normal for your testicles to shrink significantly, on Hormone Therapy?
Testicular reduction : Question, this... - Advanced Prostate...
Testicular reduction
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Doug47
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Sounds great! Beats the alternative. Anything else I should pay attention to?
This may be helpful info for what you may or may not experience : mayoclinic.org/tests-proced...
The individual medication insert can be found online if you’re interested in knowing more, some are not.
My husband’s oncologist did not explain the Hormone treatment to us except for “a little fatigue” off/on. I wonder if this is how they are instructed in what to tell the patient.
We still like our oncologist but he could have been a little more forthcoming with the number of side effects most men experience.
in reply to Advo__cate
It ‘s the unspoken truth.. Docs know patients are ravaged by ADT.. It’s the price that we pay to stay alive ...
Sorry to be so naive but, what happens if I don’t?
Yes. The function of your testicles is to make testosterone (and sperm). When they can no longer do that, they atrophy. They will rebound in size if ADT is stopped.
Well, right now and most likely to my end, that’s not going to happen. What I mean is, there’s no life after ADT. So, this new side affect is prolonging my life. I should have deduced the fact of what the ADT is doing and not being surprised of my newly found discovery. Thank you for the information, I’m just amazed that my Oncologist didn’t at least bring that up. Over a month on ADT, and I’m still discovering things. That one was a little shocking to say the least.
You might want to consider orchiectomy. They fit you with normal sized prosthetics. And no more injections.
So, removal of the testicles could be a helpful thing?
Castration is pretty much the same whether it is chemical or physical.
I get that, I guess the question would be, does it matter if I make it permanent or not. The Cancer is going to adapt eventually with or without my testicles. Removal just means I will never produce testosterone again but, that doesn’t mean that will prevent my Cancer from taking me in the end. Is that about right?
Yes. The hope with castration is that progression will be delayed, but not stopped entirely. As the cancer evolves, it gets super-sensitive to even the smallest amount of testosterone, so it is best to eliminate what you can even after castration-resistance.
Do they take you on and off the ADT throughout this process? Or you stay on them until it stops working all together? Man, I need to really have a better conversation with my MO. They are so vague! It also seems like they all say the same shit with restrictions,
At 68 had mine clipped. Planning on 10 more years and didn't want ADT drug side effects that exceed orchiectomy side effects... Fast growing, aggressive, invasive, and already metastisized. On ADT for life or never again, not a hard choice for me.
A lot to consider for sure. I’m 47, with a young wife. It’s tough knowing that I will never be able to partake in sex if you know what I mean. So, removal stops ADT? Because basically, those drugs are castrating me anyway so my body doesn’t produce testosterone. Maybe saving my liver is worth the “CLIP”? And all other side affects from ADT?
You will also never smell like an old goat again....
I can relate, I'm 54 and my wife is 45. Yes there are other satisfying ways to be sexual as a couple, but you don't necessarily have to abandon the possibility of having intercourse. You can get a penile implant if your prognosis requires permanent testosterone reduction/ removal. The only issue might be that they would need to leave the scrotum when removing the testicles since the implant leaves the pump part of the device in the scrotum. I get my last radiation treatment today, but will be on lupron/zytiga/dethamexasone for another 5 months or so. I'm scheduled to get an implant next month.
Good suggestion, I will look into it. Did you talk to your oncologist about this?
He knew I was doing the injection therapy test and was fine with that since the meds wouldn't interact with anything related to my treatment. He sent a quick message to the surgeon because the surgery date is only slightly over 30 days from the end of my radiation treatment, but other than that he said it should be no problem.
Some men choose intermittent ADT. But its use in men who are already metastatic is controversial.
Thank you
Tall_Allen...two questions - why get it done if you still need to have hormone therapy? And
-any recommendation where to go for an orchiectomy?
Orchiectomy REPLACES hormone therapy with a GnRH agonist (like Lupron or zoladex) or antagonist (like Firmagon). It does NOT replace second-line hormonals like Zytiga, Xtandi or Erleada.
I would think any urosurgeon can do it.
Thanks!
in reply to Doug47
They let you find out for yourself.
Sugar and flour
Nal — to not watch sugar and flour intake.
My take on it — you will look like you’re 7-8 months pregnant with a 10lb baby that’s growing faster than you can eat.
Diet matters with this stuff, it just does.
I think even the healthiest diet will still fall to the belly...but not as big. I could be wrong.
Mine shrunk to nothing with adt and Rt.. I stopped Lupron shots after orchiectomy 9-16..a great move for me ..no going back on that one.. it was a relief, no more shrunken painful balls or tri-monthly shots for life..I’m still on a pill form of an adt test drug..hopefully it’s checking the “T” produced from the adrenal gland.. I’ve had no visible signs and PSA undetectable for more than three years.. Whoohoo ! Thank God! I m cured! I could be pushing daisies right now.. Big balls, shrunken balls, no balls. No import . Unless someone wants kids. The penis shall shrink also with extended adt. A real party for us men and our partners.. I ‘ m grateful for ever day although I’m severely diminished in almost every way. Finding some happiness in the storm of suffering and emotions is my daily goal All of my symptoms are from
Adt causing no “T” and radiation . therapy for 8 weeks.. The answer to your question is ,Yes . Everyone on adt will experience this.. any many , many side effects of castration.
Doug47 in reply to
Thank you! I think I know what I am going to do.
in reply to Doug47
Hell yah! You’ll do what’s right for you brother and live along time.. this is a little personal but I’ve lost my ego along with my balls. I have not lost erections.. during the day the puppy sleeps But at night all night every night, I m hard and pee seven times a night all with A piss hard on . I’m 57 and was sexually driven for 43 yrs. what is funny is that I never had this much night wood before APC . Crazy sh&&!
in reply to
Sorry! I used to be a terrific speller.. I fumble around a lot now . Blame mental de-cognition also on no “T for 4yrs.
The sad truth... I used to be 7 and pretty girthy, no “John Holmes” but above average... now after Rt , hooo, continued Adt use and double use of adt and T = < 2 for past 4 yrs I’m borderline pencil dick. No balls - pencil dick what a catch ???for my sexy wife.. She loves me to put up with this BS.. and more.. Take Care
MMMayhem in reply to
I developed ED after RP and then hormone therapy and radiation. Also learned the radiation can cause it a couple years after you finish treatment. Had an injection therapy test with an ultrasound and mine is caused by venous leak. Pills and injections won't fix it, so I'm getting an implant next month. MSKCC in Manhattan has a great sexual health department to deal with this and even if you won't come here to see Dr. Mulhall for treatment their website and videos are worth looking at to figure out how you want to get treated elsewhere.
j-o-h-n in reply to
I use to be two Inches........ from the floor.
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 11/09/2018 6:31 PM EST
Hello Dough47, Yes its normal in Harmonal Therpy. Because Harmonal Therpy majorly involves the process of reduction of Testostrone in the body,resulting in reduction of Testicles.
of course the longer your on treatment to reduce ones psa u loose the function of your penis and all that is connected toit. its called living, especially when your taking lupron/eliguard shots, its full purpose is to reduce ones testosterone and bone mass.
I sort of agree with Nalakrats but the body can not make glucose from fat stores.
Glucose can only be made from glycogen (in the liver and muscles) if there is no carb. intake.. The brain needs about 60 gm of glucose a day and cannot function on fat. Muscles love using fat but not neurons.
If you have zero carbs and use up your glycogen then you will break down protein (muscle) to make the small but essential amount of glucose you need.
The rest of your body is happy with fat (fatty acids) and ketones.
My weight has gone up on the ADT/Abiraterone dexamethasone but I am keeping reasonably fit with a rule that I must exercise every day.
I have 2 to 3 bike rides a week (150 to 220 km per week) and 3 gym sessions per week and 1 or two 1 km swims per week.
I think if I could stop all alcohol I might loose weight but I love my big luscious Aussie reds.
One side effect mentioned earlier about weight gain and watching your flour and sugar intact is spot on. ADT can push you to pre diabetes as well. Also start taking the recommended vitamin D and calcium to protect the bone loss. You might need a bone density scan at some point. Lots of challenging changes to your mind body and soul, but it works to lower the pc. Stay strong!
My respected MO transferred to Jacksonville, FL last December. At my first meeting with her replacement I asked if he could help me manage some of the cardiovascular side effects of 8 years continuous Lupron injections. He told me that was my primary physician's job. His only interest was following the Protocol.
RJ
What was your former MO’s name? I need a MO who knows PCa within reasonable distance of me here in Hilton Head Island.
Bob
Bob, my former MO was Dr. Roxanna Dronca who is now at Mayo/Jacksonville. Her specialty is blood cancers, but she was part of the CaP team @ Mayo/Rochester and, after having gone through two others there without really clicking, I delighted in our visits. She was the point person in developing Mayo's sipileucel-T clinical trial and then overseeing its implementation once it became FDA-approved. She handled my many ongoing questions well, and I felt we had a great deal of mutual respect. She worked well with staying in the loop once most of my care switched to a clinical trial out of the NIH in Bethesda, MD. Her father was undergoing metastatic CaP in Romania at the same time as me, so that heightened her interest in CaP as well.
My husband is on a therapeutic Ketogenic diet getting about 20 carbs per day, but the visceral fat on the belly is still real...even off the Lupron. We both were watching it grow like the hair on a chia pet. None of it made sense to us until I began looking at side effects.
He’s 6’2” and now weighs 184lbs. from his former 178lbs. So his weight is climbing but not as bad if he were on the typical western standard diet.
The cardiologist looked at his belly and told him he needed to lose weight. sigh. I’ll have to fill her in about ADT.
in reply to Advo__cate
No sugar
Advo__cate in reply to
He only uses pure organic stevia.
in reply to Advo__cate
Boy , I don’t like that stuff. Better organic honey... Manuka..costly be healing potential. I hear bad things about stevia and other sugar subs tricking you system in a bad way. I’m no expert. Fresh organic turmeric ginger garlic onions and an alkaline diet is recommended for all cancer .You have a natural path so you must know this. I envy the hyperbaric . I believe in that too.. mistletoe I was to try if things went south ..My pleasure to banter with you.
Doug. Men just don’t talk, yes I have a pair of peanuts now. , and small man breasts. But the PSA is .005. So I will take it Fight the good Fight
Yes, your penis also shrinks
It doesn't have to. Try using a pump everyday.
3 years on ADT2 (Lupron + Casodex) during and after IGRT. My little guy lost almost 2" of length from disuse. Even with recovered testosterone now, it's not recovering size though it's at least "working" again. The boys are less than 1/3 of their original size, still kind of mushy, and it's almost like they're not there anymore. Never have to worry about adjusting them, or getting squished by clothing or whatever. Full removal wouldn't be much different.
Long term ADT ends up not being so different from orchiectomy. If I do go back on ADT it will be permanent (G9 5+4, cT3a, not encouraging), and I'm planning on orchiectomy for simplicity, cost, and maybe less of some side effects.
I have little knowledge about the state of ketosis.
The limited knowledge I have is something like this:
"The body saves up for the future in two ways:
Glycogenesis. During this process, excess glucose is converted to glycogen (the body’s stored form of sugar) and stored in the liver and muscles. Researchers estimate that the body stores approximately 2000 calories in the form of muscle and liver glycogen. Depending on the person, this means that glycogen levels will be depleted within 6-24 hours when no other calories are consumed. Luckily, we have an alternative method of energy storage that can help sustain us when glycogen levels are low — lipogenesis.
Lipogenesis. If there’s already enough glycogen in your muscles and liver, any extra glucose will be converted into fats and stored via a process called lipogenesis. In contrast to our limited glycogen stores, our fat stores are virtually unlimited. They provide us with the ability to sustain ourselves for weeks to months without adequate food.
When food carbohydrates or calories are restricted, glycogenesis and lipogenesis are no longer active. Instead, glycogenolysis and lipolysis take their place, freeing energy from glycogen and fat stores.
However, something unexpected happens to you once your body has no more glucose or glycogen? Yes, fat is still used as fuel, but an alternative fuel source called ketones is produced as well. As a result, ketosis happens." Craig Clarke
I agree with what you have to say. My breakfast consists of smothies made with frozen fruit two eggs (raw ) whey protein and Greek yogurt and a glass of milk and a scoop of chia seed. Nexus all in a blender it will keep you full most of the day.
My husband’s breakfast is coconut milk, flax meal, chia seed, hemp seed, cauliflower rice, raspberries or strawberries, vanilla, cinnamon and salt. It’s Keto porridge, very similar to your breakfast but it doesn’t keep him full for most of th day.
in reply to Advo__cate
That’s awesome. I want want one right now. What some people don’t understand until they try it is once you switch to the natural diet you crave it and don’t want to go back.. I cheat sometimes..I’m a sinner , but I get right back too it.. I’m sure that is why my blood work is so great. 4 yrs of holistic eating..
in reply to Poscan4
Wow! Raw eggs , you are a bad ass. I love the chia..take care
Hubs isn’t on the diet to lose the Lupron belly but to keep from some of the metabolic issues it causes and QoL.
Is it possible you are confusing Ketoacidosis (like diabetic) with Ketosis?
Why does it seem like I just read the wall graffiti in a men's room? All I can remember is the guy pissing in the urinal next to me saying "man is this water cold" and me replying "and deep too".
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 11/09/2018 6:35 PM EST
Size of grapes
Why do we keep them then? The Cancers doesn’t go away.
Had mine loppped off a year ago and don't miss them at all.
No. Thought that they would get in the way like the real ones.
Hi Doug 47, nobody here has mentioned the brain fog that goes with hormone treatment. It has been proved I read that long term treatment can lead to Alzheimer desease.
I threw my casodex away & recently had success with lu -177 treatment & there are trials in the states now.
Keep on keeping on!
Has for me. Been treated with Lupton for over 14 years and mine are very small.
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