Totally lost, no real definitive proof - Advanced Prostate...

Advanced Prostate Cancer

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Totally lost, no real definitive proof

Doug47 profile image
46 Replies

I am 47, I have APC METS, G9. No cancer found outside of the prostate yet. I’ve been on Lupron, Zytiga, FLOMAX, and Steroids for 4 months. I am at the crossroads of choosing surgery to remove the prostate and known lymph’s affected by Cancer or do radiation. I have talked to 6 different doctors and I have read some good vague advice about both.

I realize the choice is mine. I really don’t want to do the surgery,,,, is that a fatal mistake??

Can any of you simplify for me which way you would go or did go. Basically what would you do?




46 Replies
Tall_Allen profile image

That's not the choice I laid out for you. It's your choice and you are fully capable of understanding your options and making an informed decision. Private message me if you like to get a fuller explanation.

Doug47 profile image
Doug47 in reply to Tall_Allen

How do I private message you

Darryl profile image
DarrylPartner in reply to Doug47

To private message.

I chose to participate in the SIMCAP clinical trial for recently diagnosed metastatic PC patients. I understand that you have not been diagnosed as metastatic, but just wanted to share my thoughts.

After having had genetic testing and being diagnosed with the BRCA2 mutation, radiation was not an effective option for me. In addition, I had been told by my then MO that I would not be able to find a surgeon that would operate on me since I am metastatic. This made me more determined to have the surgery, which was done on Nov 14 2018 as part of the trial.

As a result of the surgery, they found seminal vesicle intrusion and 2 lymph nodes out of 27 with cancer, which was not known previously even with multiple scans.

My basic thought process was that since I have PC then remove the culprit. I was also comfortable with my decision because I knew I had a great experienced surgeon. 6 weeks post-op so far so good, with minimal incontinence. And now no more need for Flomax; my urine flow is the strongest it has been in years.

Doug47 profile image
Doug47 in reply to HopingForTheBest1

I have been diagnosed with metastatic PC

Doug47 profile image
Doug47 in reply to Doug47

I don’t have the BRCA2 gene. And I have 6 lymph’s known to be infected

HopingForTheBest1 profile image
HopingForTheBest1 in reply to Doug47

Ok, so have you also had genetic testing?

HopingForTheBest1 profile image
HopingForTheBest1 in reply to HopingForTheBest1

Since you are also BRCA2 positive, and now know you/we are predisposed to aggressive PC, have you looked into PARP inhibitors? I had a meeting last week with one of the top BRCA2 researchers/oncologists in the country at UPenn. She told me that should I eventually become castrate resistant after my current ADT therapies, I should seriously consider PARP inhibitors. They are currently in the clinical trial stages.

Doug47 profile image
Doug47 in reply to HopingForTheBest1

I don’t have the BRCA GENE.

HopingForTheBest1 profile image
HopingForTheBest1 in reply to Doug47

Sorry for the mix up.

Doug47 profile image
Doug47 in reply to HopingForTheBest1


Doug47 profile image
Doug47 in reply to HopingForTheBest1


sammamish profile image
sammamish in reply to HopingForTheBest1

Hey Hoping, quick question, I assume that was a germ line BRCA2 mutation?

Also, did your Onc suggest not doing radiation because of the potential sensitivity to radiation?

HopingForTheBest1 profile image
HopingForTheBest1 in reply to sammamish

Correct, yes to both.

sammamish profile image
sammamish in reply to HopingForTheBest1

I'm in the same boat with ATM germ line

DBritton profile image

Doug...if u radiate First there is no way a surgeon can go in and remove prostate...would be like doing surgery in a blizzard...

I had surgery glad I did..during surgery they found the cancer went to my bladder....

Do surgery!

Kimmilemo profile image
Kimmilemo in reply to DBritton

What did they do about cancer to the bladder?

blueeyes74 profile image

I would go for the surgery.... my husband was diagnosed 2 years ago at age 45 but his had spread to lymph and one spot on ribs. We were therefore not given the surgery option, but in my mind if you can take out where the cancer started then surely that is the best option ???? As mentioned above if you radiate first then there are very few doctors who would then perform surgery ...... Good luck and keep fighting!

Ldb01 profile image
Ldb01 in reply to blueeyes74

We had same thing in 2016. Stage T1 C. Small spot on rib and in lymph nodes. I asked why the cannot remove the prostate ? Was told no surgery, no radiation and no chemo required. Two years later Stage 4 something or other, increased bone mets all over. 2 failed rounds of chemo. Again we asked about RP but were told no, it would no destry the nerves. So now my husband has just started Zytiga. We are also seeing a professor next week who offers ACT 225 specially for bone mets. Makes me furious that would they would not remove the prostate in 2016 already.

Dayatatime profile image

Doug47 - Your first shot at this has to be your best one and you are 47 with a lot of years ahead of you. I had lymph mets and I was told by a Professor of Radiation Oncology from MD Anderson to get surgery because of my age. I see a very highly regarded Urologist that performed a successful surgery on me and gave me years beyond my initial diagnosis. You have prostate cancer that has spread to lymph nodes. Possible chance at curative but very good chance it will come back. Leave something incase it does. Very good chance you will end up needing both. Highly doubtful you are walking away from any treatment with zero side effects however choosing a highly experienced surgeon will limit that. Nobody can guarantee anything will work and there is nothing easy about this disease. You have a great Oncologist and she knows this disease. Listen to her.


in reply to Dayatatime

I agree

larry_dammit profile image

My dad had seed implants 20 years ago, among several other things. Bought him a lot of time. Now 87 just turned stage 4. The choice is a tough one but it is yours. Just do something before it goes to Mets. Fight the good fight

in reply to larry_dammit

Sorry about your dad..

pakb profile image

If it is in your lymph nodes then it is outside of your prostate? So it is metastatic? Just confused because in your post you said not outside of the prostate but then you say your lymph nodes have cancer.

There are a lot of posts on here about "debulking with metastasis". I'd search for them and read all of the discussions. It's a decision that you will have to make for yourself since there are many opinions about it.

Doug47 profile image
Doug47 in reply to pakb

I worded my information incorrectly. I meant nothing was found via pet scans outside of my pelvic area

Hirsch profile image

Didn’t a recent European trial show that with greater than 3 mets, adt and abi were as effective as adding radiation. So.. no proof that radiation helps with 4 or more mets. Also you have metsbut no cancer outside prostate?

Doug47 profile image
Doug47 in reply to Hirsch

I have cancer outside of my prostate but now I don’t know if it’s outside of my pelvic. I guess surgery is the only way to know????

Doug47 profile image
Doug47 in reply to Hirsch

Maybe I’m confused on the terminology, I have G9 prostate with infected lymph’s over 4 seen enlarged and 2 of them I already had a biopsy on for confirmation, it’s that metastatic?

Surely this is a typo, “No cancer found outside of the prostate yet.” With a 9, you might think about:

This excerpt is from a trial of ADT and Chemotherapy given before prostate removal. The third sentence might be a talking point at your next MO visit.

“This is a study for men who have locally-advanced prostate cancer and are eligible to undergo prostatectomy. Standard treatment is prostatectomy alone, but there is a chance that cancer may spread to other organs in the future, even after the prostate is removed. If this were to occur, standard treatment would be androgen deprivation therapy (ADT; hormone therapy that blocks testosterone) plus chemotherapy. Clinical trials suggest that neoadjuvant treatment (treatment given before primary therapy) may prevent a recurrence. The purpose of this research study is to assess the safety and benefit of ADT plus chemotherapy given before prostate removal.”

Gourd Dancer

Dayatatime profile image
Dayatatime in reply to

Actually this is a good point to bring up. In my case it wasn't planned that way it just happened by changing doctors and going into a different treatment path. I had extensive nodal disease and several large nodes in scans before surgery. It was discovered during surgery most of what they thought was cancer was scar tissue. Early chemo with ADT had wiped out all of it except one positive node out of 42 removed. Which brings up another point being the benefit of an accurate pathology report stemming from surgery. It would be worth bringing up to your doctor.

Doug47 profile image
Doug47 in reply to Dayatatime

So yes to surgery

Dayatatime profile image
Dayatatime in reply to Doug47

Doug - Look at the obvious....your young, strong, only local lymph involvement, still a chance at cure and some heavy hitters in your corner specializing in this disease. Your best shot is hitting this disease hard before it's castrate resistant and it's knocking you around. Right now the momentum is going your way and it's crucial you keep it that way. My surgeon was also my age and we have a great connection. He knows where you are right now and what your feeling. Being in our 40's there is a lot to think about. I wouldn't wish this shit on anyone. If you have any questions about recovery or just want to talk about it I'm here. Just message me.


Doug47 profile image
Doug47 in reply to

So confusing

j-o-h-n profile image

Ohhhh Doug..... what can I say.... It's your call.... but for me it was "get that M.Fing thing out of me right now!!! Where are you located, being treated and who would be your surgeon if you choose to "get that M.Fing thing out of you right now"?

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 01/02/2019 4:44 PM EST

Doug47 profile image
Doug47 in reply to j-o-h-n

Swedish by Dr Porter

j-o-h-n profile image
j-o-h-n in reply to Doug47

Thanks, Looks like he's got it himself and has lots experience...That's a good sign...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/03/2019 5:42 PM EST

leach234 profile image

How do you know the cancer is not outside the prostate without having surgery?

Doug47 profile image
Doug47 in reply to leach234

You got me there, I guess I dont

Doug47 profile image
Doug47 in reply to leach234

Brain fogging on my part! I didn’t mean to say it that way

karlsiller profile image

If it’s not outside the Prostate, it is not considered metastatic, which is pretty good news!

Doug47 profile image
Doug47 in reply to karlsiller

It’s outside

JimVanHorn profile image

I believe you should ask a doctor who does not profit from either decision. Also your Gleason score and type of cancer makes a difference. Is it in the walls or other parts of the prostate? I chose 42 radiations but then 4 years later the cells metastasized and I had 30 more radiations. I was on Lupron (Eligard - generic) for 6 1/2 years. My last shot was last May and now they tell me I no longer have any cancer. Each of us have different types of PCa, in different places, different insurances, different doctors, different other diseases, different ages, so we can not tell you what to do, we can only tell you what we did. I can tell you that I had no medical insurance for the first 42 radiations and the hospitals in my area (Orlando) charged $130,000. I checked around and found a urologist with a newer machine that only charged me what Medicare pays, $30,000. Then I had Medicare for the second 30 and only paid $42. So ask other about their surgery experiences and just remember to just keep truckin'.

in reply to JimVanHorn


ken12491 profile image
ken12491 in reply to JimVanHorn

whoa --- that is one hell of a story - u have to be one the strongest people I have ever read about ... incredible....way to go JVH!!!!!!

ken12491 profile image

Doug47 - very sorry to hear your situation. I was/am a G 9 ( but no METS - stage 3...regional - age 65at dx, now 67...

Are you stage 3 or 4?

There are so many opinions out there, most folks are confused, I am too...

I was told that RP would be the best choice for me, and clean up any other PCa with RT and ADT afterward - RP was open to me since there were no METS...... Did they tell u otherwise, that u could have surgery and then clean up with ADT and RT? If so, you would be taking the route I did..... ADT ( Lupron ) no a fun time, but it drove my PSA from .81 to Nidar - stayed there about a yr at Nadir..... 40 hits of IMRT, all that time ( ADT 1 yr, pre, and post ).

Had my 1st PSA check on 12/17/18, its now .19. Another PSA for tomorrow to see the change --- and DT if any....Me personally, that's the route I did..... At this point, me personally with my #s I'm about to just play it out until I have symptoms. The route I took was not fun and the ADT knocked me on my butt for weeks. T - levels went from 505 to low 20 - now, they re 421....Not sure what tomorrow holds for me - I would get to the best center for this treatment, and go with a surgeon that has done 100s.... best of luck to u... found a kinda of interesting prediction tool ( Namogram ) on MSK site --- plug in your #s and tell me what u think, please... Ken

Additional Tools

Male Life Expectancy

Using inputs of current age and race, this tool calculates average life expectancy, which can be used for comparison when considering the survival probabilities of various treatment options.

When I used it, it says --at 10 yrs I would only have an 18% chance of dying from PCa and 15 yrs 23% of dying from PCa ---- makes me really wonder, to do anything at all.. Plus I already did what I described above -- My RO basically ' blew ' off the #s and tool.... I have 3 notes into MSK to address the validity of the tool, they have yet to respond.

This tool tells u what u could expect if I did NOTHING to treat my PCa..Something else would get me b4 the PCa would.... I am not suggesting u make such a huge decision based on just this tool, but it will be used by me to help decide what to do next... again, I wish the best for u - I doubt I would be able to go on, living and QOL, with this blood test hanging over my head....

Doug47 profile image
Doug47 in reply to ken12491

Stage 4

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