New PC diagnosis...no good choices

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New PC diagnosis...no good choices

by LessPaul on Tue Nov 13, 2018 12:16 AM

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Hi all.  Thanks for being here.

Two weeks ago, I was diagnosed with PC. PSA around 11. T1c grading. Gleason 9 (4+5).

I'm pretty anxious...no good choices. The 2 basic flavors, surgery & radiation, I've begun referring to as Trump & Clinton.

The wild card tho, is hormone therapy.  And is recommended with the radiation.

Talk to me about what hormone therapy really does to a guy.


Everything points to long term (if not permanent) loss of sexual function. Average 10% weight gain. We grow boobs. Bones get weak and could break. Loss of energy. Lose what little hair I have left.

Sounds like a genetically engineered couch potato.

I'm an active guy. Age 63. Very recently retired. I'm in good shape and keep moving. The idea of losing so much physical ground terrifies me.

But surgery scares me. Nerves are delicate structures. That could go all-or-nothing, with no way to know in advance. Urinary incontinence looms.

So, basically I'm flailing right now.  Talk me off the ledge a bit, eh?

RE: New PC diagnosis...no good choices

by Activeguy on Tue Nov 13, 2018 02:17 PM

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Hi LessPaul,

I'm 62 and had the same Gleeson score.  Found out in August of 2016.  I've gone thru all of it.  Started with Surgery in November of 16 and that all went well however there were positive margins so it didn't end there.   Went on Lupron and radiation in spring of 2017 and that apparently didn't stop the growth of cancer cells either so now i am on Lupron and Chemo.  Ok, so now for the good the bad and the ugly. Surgery was robotic and they took out one side of the nerve bundle. Rock hard erections are a think of the past unless I use the little blue pill or equivalent.  You still orgasm, but it's a little diferent.  Recovery was pretty easy and i was out ie fishing in January of 17.  Radiation is super easy.  I went in every day at 7:00 am and was at work by 8.  No side effects and very easy.  I've heard of all the potential side effects of Lupron and I am happy to say I've had none of them.  I wouldn't even know i am on it. The Chemo is also going pretty well.  I have six treatments 3 weeks apart.  Monday I go in for the fourth one.  I am a very active person and continue to be so.  Since the start of Chemo, I have been working on the renovation of my house.  I go out and work outside for almost 8 hours a day.  There are a couple of days I feel a little more tired than others but overall i am tolerating Chemo pretty well without many of the side effects I read about.  Beats the heck out of the alternative. I've lost some of my hair but not all of it to the point I can still go out without a hat on an don't feel like everyone is staring back at me.  Hope this helps.  If you have any more detailed questions, i am happy to answer them.

RE: New PC diagnosis...no good choices

by Activeguy on Tue Nov 13, 2018 02:20 PM

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Forgot to add a couple of important facts.  You do NOT grow boobs.  That is false.  Yes, you do gain a little weight but exercise and an active lifestype should help that.

RE: New PC diagnosis...no good choices

by LessPaul on Wed Nov 14, 2018 01:34 PM

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Thanx activeguy. I apolgize for the tardy response.

I'm encouraged by your scenario. It helps to hear that someone else had the same fears as me, yet has put their life back together.

I will say that the hormone treatment is documented to have a significant incidence of man boobs. I don't know the rate of incidence, but the Mayo Clinic lists it as a side effect risk worthy of mention.

https://www.mayoclinic.org/tests-procedures/hormone-therapy-

Thanx again!

RE: New PC diagnosis...no good choices

by tomatoman on Fri Nov 16, 2018 05:47 PM

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I'm near 73 years old now.  Diagnosed with PC in 2008.  PSA rose in 2012, so I went on hormone therapy.  Ditto 2014 and 2016.  Have not had any hormone therapy since 2016, June, about 2.5 years ago.  Weight has been constant throughout.  Boobs and hair are not happening.  Although erection capability did seem to come back a year after lupron first two sesries, it has not come back yet since the last round.  So that is the main side effect of the lupron.  

So here I am almost seven years into stage 4, which is good imo.  I am trying to control tumor growth in lymph nodes and on my skull with heat therapy (and lycopenes).  Although my anticancer activity seems to work it also seems to raise my PSA.  Latest PSA reading was 12.8, up from 11.6 in late August.  

RE: New PC diagnosis...no good choices

by genemyers on Tue Nov 20, 2018 06:35 AM

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You have serious cancer and should think first about eliminating the cancer.   

Consider getting a MpMRI to see if they can find the extent of the cancer and if it is outside the capsule and if it is in the SV or Lymph nodes. This scan could change your treatment planning. Only if the scan is clear outside the prostate would I consider surgery. Psa around 11 and Gleason 9 makes me concerned that the cancer is somewhere other than in the prostate, in which case surgery will not get it all.

Lastest evidence suggests that high risk or locally advanced cancer is best treated with IMRT to the prostate with radiation to the pelvis, plus Lupron (actually Degaralex). On Lupron some doctors will continue it the rest of your life, some will do 3 years, there is recent evidence that 1.5 years may be enough. This is negotiable with your doctor. This is important because if you are on Lupron a short time, most often (but not always) the side effects will reverse when you go off of it. 

Lupron has a whole series of potential side effects, but knowing about them in advance with a smart doctor, you can navigate it. Get the Book “Androgen Deprivation Therapy, An Essential Guide for Prostate Cancer Patients and their Loved Ones”.

Serious weight training 3x per week at the beginning of Lupron can counteract a lot of the side effects.

RE: New PC diagnosis...no good choices

by Johnzo2015 on Tue Nov 20, 2018 07:15 AM

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On Nov 13, 2018 12:16 AM LessPaul wrote:

Hi all.  Thanks for being here.

Two weeks ago, I was diagnosed with PC. PSA around 11. T1c grading. Gleason 9 (4+5).

I'm pretty anxious...no good choices. The 2 basic flavors, surgery & radiation, I've begun referring to as Trump & Clinton.

The wild card tho, is hormone therapy.  And is recommended with the radiation.

Talk to me about what hormone therapy really does to a guy.


Everything points to long term (if not permanent) loss of sexual function. Average 10% weight gain. We grow boobs. Bones get weak and could break. Loss of energy. Lose what little hair I have left.

Sounds like a genetically engineered couch potato.

I'm an active guy. Age 63. Very recently retired. I'm in good shape and keep moving. The idea of losing so much physical ground terrifies me.

But surgery scares me. Nerves are delicate structures. That could go all-or-nothing, with no way to know in advance. Urinary incontinence looms.

So, basically I'm flailing right now.  Talk me off the ledge a bit, eh?

Hey I understand your concerns... Back in 2015 I was diagnosed with stage 2 prostate cancer and in May of 2015 had the robotic surgery.

I later found out that my stage 2 was more like stage three, the cancer had actually spread outside the prostate.  I wound up having to also undergo 38-40 sessions of radiation and a year of receiving Lupron hormone injections... You could say I have had it all.

All of the above treatments have their share of side effects and I experienced many, especially with the Lupron. I had night sweats/hot flashes, leg fatigue. These two have been big issues for me.

One thing that helped with the swets and hot flashes were dry-fit t-shirts and Polos. I also always carried seveeral towels to dry off.

My best advice is make sure you do your research, as there were a lot of things I found out well after the treatments.

Good Luck!

RE: New PC diagnosis...no good choices

by LessPaul on Tue Nov 20, 2018 01:21 PM

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Thanx to all who've responded. My head is in quite the whrl right now. It helps to hear other's stories.

That said, my range of options seem to be narrowing. I've been judged non-metatsatic by all available measures, but that's today. It won't neccessarily hold for tomorrow.

Last week, the results of a CT scan revealed that I have a bunch of blood clots in my lungs.  I was admitted to the hospital overnight for observation. Tests also revealed a small aortic ulcer. Because I'm now on a blood thinner (eliquis) and will be for the foreseeable future, surgery would seem off the table. Some docs have said the blood thinner issue should be negotiable with surgery, others feel differently and consider me a poor surgery candidate.

I started out leaning toward radiation. Once I learned that hormone therapy is an essential part of that treatment (and its additional side effects), I leaned back toward surgery.  When the clots and whatnot were discovered, I've again shifted back toward radiation/hormone therapy.

I know I need to get treatment started. Like now. Like yesterday. But I'm also now in mourning for loss of function that I haven't even experienced yet.

I guess I've always assumed I would survive this. My Dad had 2 bouts of prostate cancer, starting at age 65 (I'm 63). He got radiation only with the initial diagnosis and hormone therapy only when it reappeared 20 years later. He passed at age 90 of unrelated causes. He died with prostate cancer, not of it.

But I am also very mindful of my Gleason score. I know this is nasty shit and it's not always containable. If I were metastatic, I probably wouldn't be whining about side effects.

Thanx everyone.

RE: New PC diagnosis...no good choices

by fishing123 on Tue Nov 20, 2018 09:35 PM

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I had robotic surgery in April, all checks-ups have been good. I

was in diapers for just a little over two months. Decided on surgery as my first option. 

RE: New PC diagnosis...no good choices

by fishing123 on Tue Nov 20, 2018 09:52 PM

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Im sorry did not read surgery may be off the table, good luck

and God bless with what option you decide on.

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