New PC diagnosis...no good choices

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RE: New PC diagnosis...no good choices

by yamobedeh on Mon Jan 07, 2019 09:01 PM

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First, get on your horse and dive into research on the net. Check out HealthUnlocked.com and join the PCa group. The national Cancer Societies are an OK source of information. There are members on HealthUnlocked who are current or retired professionals from cell biology, biochem etc backgrounds who are experienced researchers and writers. They are an invaluable asset. These are the guys who have the research background and experience docs draw from. They are part of an extensive internationbal pool of PCa patients from whom you will learn about the newest research and treatment, as well as supplements and dietary guidance.  With G9 and if PCa has progressed out of the prostate capsule, most would agree that RT is by far the recommended intervention. Surgery on a prostate in which PCa has escaped, especially with G9 suggests that you will need RT anyway. 37 RT sessions, extra focus on any metastases, if scans show these. Then boost with brachytherapy. Consensus also seems to be that there is significantly lower chance of incontinence and ED with RT. The consensus seems to be a minimum of a year on ADT, best on triple blockade (Lupron or Trelstar 3-month shots plus Casodex plus Avodart)  And yes, many men grow boobs, especially if they use estrogen patches (to minimize hot flashes etc) There are other meds you can take to minimize man boobs. It's recommenmded you don't RT your breast area. Why expose yourself to extra radiation for a comparatively minor issue.? You can get liposuction or other surgery later if you want it. Worst SEs of ADT are the overwhelming fatigue and cognitive and memory deficits many men experience. Weight training and cardio 4-5 times a week can minimize these effects. With such low or absent testosteroine, you likely will have little or no interest or ability for sex. That usually comes back.

Keep in mind, if you respond well to the ADT, your PSA will decline pretty quickly, and the SEs of the ADT will likely become apparent quickly as well. 

After this initial multimode treatment, you will monitor your PSA and testosterone, plkus any metabolic blood work for years. 

You have to go to war on this if you want to have the best chance of a good outcome. There is a lot to learn, both on treatment info, and about the realities of the disease.

Best wishes for a good outcome.

RE: New PC diagnosis...no good choices

by Himads on Mon Jan 21, 2019 04:39 PM

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Hi LP,

I tread your note with great interest. For what it's worth I will share my situation. I was diagnosed with prostate cancer in late February of 2018 and had robotic surgery in May. The surgery went well, the margins were clear, and the side effect profile is improving. Not too much problems with ihncontinence. Sexual functioning is not back yet even with Cialis. Considering moving to the injection option for erectile functioning.

Like you, I have been physically active (former jogger and competitive tennis player; now mostly swim and do the elliptical machine because I need a right hip replacement). The surgery has NOT impacted my ability to work out. I am 69  years old and remain in good shape and am healthy with the exception of the prostate and hip.

If you do eventually elect to have surgery, it is important to select a surgeon with a lot of experience with the nerve-sparing, robot-assisted procedure.

If you can, although I know it is challenging, try to stay in the here-and-now as much as possible. Mindfulness training is a good option if you find yourself catastrophizing about the possible consequences of any treatment procedure you are considering.

Good luck to you and, if you like, keep us informed of your decision regarding treatment and outcomes.

Himads 

RE: New PC diagnosis...no good choices

by pkhughes on Mon Jan 28, 2019 08:58 PM

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Good afternoon LessPaul,

I have been fighting PC for a little over three years. I started with robotic surgery at Cleveland Clinic which went pretty good. They were able to save most of the nerves and erections did come back with phisical therepy and help from a pill. My cancer however ended up being grade 5 and stage 4 when all was said and done. In the beginning I was like you, a lot of reading and research to see what my options were. Being 57 sex was my main concern that's why I traveled almost 400 miles to have robotic surgery. After surgery was 39 radiation treatments and 6 months later 10 chemo treatments. Today I heard the cancer had grown during chemo, go figure. Don't give up the fight, get more than one opinion and don't be scared to travel to a better doctor. God Bless

RE: New PC diagnosis...no good choices

by moore55 on Thu Jan 31, 2019 02:10 PM

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I was seeded and given 4 weeks of IMRT radiation therapy at Dattoli Clinic in Sarasota Florida in 2005. I was 48 yrs old at the time and chose seeding over the removal of the prostate due to fear of losing my sex life. The radiation was a breeze, the Lupron/Casodex/Seeding caused many problems. The Lupron shot came in a dual syringe like an epoxy, they injected it in my hip and it felt like a little hard ball inside my butt cheek. The effects lasted a full 2 years and my testosterone at one point was zero. Hot flashes, complete loss of libido, emotional outbursts such a crying. I actually said a couple times that I knew what it was like to go thru menopause and it was not fun. After the second year of this, the testosterone begin coming back and after many years leveled out around 500.

The problems caused by the seed surgery were mostly urinary. I carried a self catheter kit (still in the packaging) with me for 5 years afterwards in case I could not get the flow started. I was on every flow drug known to man and they did very little to relieve the slow flow problems. I recently went to a very good surgeon at UW Madison to have him look at doing a roto rooter. He scoped me which was an ordeal in itself due to the restriction. Once the scope was in, it was found that radiation had caused a lot of scar tissure in the opening of the prostate and he advised against the surgery due to risk of infection. The good news in all this was that pushing the scope in dialated the open to the prostate enough that my flow actually improved.

I know I probably sound like a Debby Downer here, there was a happy ending though.. My PSA has been nil since 2010. I am on one urgency drug in 2019, but nothing else. I had an ultrasound last summer and all is well in the prostate department at this point. The after affects of the seeding were a real bitch but I feel it was the best choice and would do it again if neccessary.  I think I would get many opinions on the subject of Lupron if asked to do that again though. 

Best of luck to you... 

RE: New PC diagnosis...no good choices

by LessPaul on Thu Jan 31, 2019 05:37 PM

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Thanx to all who responded. My situation has evolved...for the better. U of M had a second look at my pathology slides and downgraded my condition from Gleason 9 (4+5) to a Gleason 7 (4+3). That opened up some additional treatment options. Instead of 2 years of Lupron and 45 radiation treatments (5 days/week, 9 weeks), I'm on track for 6 months of Lupron and 5 hi-intensity rad treatments spread over 10 days, using the cyberknife tech.  Sucks a little less.

I just underwent fiducial placement of gold seeds a couple days ago in prep for the simulation (next week). The procedure wasn't terrible, but not without discomfort. Post procedure has been pain free. 

I've been on the Lupron for about a month now. The biggest side effect has been hot flashes. During the day, they come and go quickly.  At night, I get them more frequently.  They usually wake me up, and so I've not been getting good sleep.

Libido basically disappeared. I have no idea at this point whether I could or couldn't respond sexually. I almost don't want to know.

Overall, I still feel fine (beyond the hot flashes). My urine flow seems to have decreased and it takes more effort to empty.

Anyway, that's where I am today. Thanx again for everyone's concern and personal stories.

RE: New PC diagnosis...no good choices

by Roscoe365 on Sat Feb 16, 2019 05:38 AM

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Many of us had to make the same decisions, as I did. Hells Bells, the first option, was to o home and live the best I could for the next 12-18 months. That was my original death sentence. Well I am working on year 4 with an undetectable PSA. Make sure you have a good MO, a RO, and a Surgical Urologist. Being at a center of excellence also gives access to trials and research. I opted for the surgery, and had to convince my Urologist to take me on. Yes I did ADT after, for 2 years, and now on a drug vacation for a year. Life is good, and I had open nerve sparring surgery, so off the drugs exerything works, just a bit different as to the feelings.

Roscoe365

RE: New PC diagnosis...no good choices

by Roscoe365 on Sat Feb 16, 2019 05:46 AM

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Sorry to here about the cancer coming back after surgery, Radiation, and Chemo. Have you been gene mapped, to determine if thereare any Mutations, as most new tereted drugs are working off gene mutations. There are many trials using pARP's and Checkpoint Inhibitors.

Roscoe365

RE: New PC diagnosis...no good choices

by LOOK4 on Sat May 25, 2019 07:39 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?

Well sir... you and I haave the same trepidations. Hormone is a horror story. The mdial establishment sells anything they can keep the profits running on. I, too, am shopping for a more humane answer. SO! Is there any choice but alternatives like, Dr William Li and Anti-angeogenisis therapy = foods that depliccate or, in some cases, exceed the effectiveness of chemo? He cured his mother with this science. Look him up.

RE: New PC diagnosis...no good choices

by Sowikwb on Fri Jun 07, 2019 01:55 AM

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If your cancer has not gone outside the prostate, I would think seriously about having it taken out.  My husband was being monitored and all of a sudden, his PSA went up to 468 and the cancer has matastasized to his bones.  Only wish we knew then what we know now. Acupuncture helped my husband with the hot flashes and anxiety.  I wish you luck in your journey.

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