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Advanced Prostate Cancer
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Urologist appt about frequent urination

Well this was the first time I talked to a urologist after my diagnosis. I went in to talk about going to the bathroom every 30 min and he gave me some options to potentially take another med to reduce the prostate if my bladder is emptying out or since I’m young to potentially remove my prostate and lymph’s, if I qualify on a trial test that may prolong life and knock out the frequent bathroom visits as well.

That took me back a bit, he was saying that advance prostate metastasis patients who are younger are having their prostates and lymph’s removed but, there isn’t enough data to support that process to be the answer. He did mention that when then Cancer comes back through the prostate it could be worse.

I don’t want to remove my prostate if it doesn’t make sense. The problems that come with that are huge. And there is no guarantee that it would benefit me at all.

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These articles have some information about the results of the phase 1 trial NCT02458716 and the new SIMCAP trial:

ascopubs.org/doi/abs/10.120...

urotoday.com/conference-hig...

clinicaltrials.gov/ct2/show...

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Thank you, from what I understand, this surgery for those symptoms has a low success rate with additional life time problems from the surgery. To soon for me to jump on that one!

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I am enrolled in the SIMCAP clinical trial at Rutgers Cancer Institute. My surgery is scheduled for Nov 14.

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How old are you and what was it that convinced you to do this.

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So far I haven’t heard anything that is definitive enough to chose that option. What are your medical stats

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I am 63. As I have aggressive PC with Gleason 9/10. I need to be aggressive in treating it and get rid of the source. While my current ADT, 3 months in, has put me into "remission" with my latest PSA at 0.2 and AP at 60, the Surgical Oncologist has told me that it will eventually stop working.

While he can not say definitively, he anticipates the procedure could possibly result in a cure. I sure hope so. Also, as October is breast cancer awareness month, I have read multiple stories about women who have the BRCA gene and proactively remove their breasts. So why not men removing their prostate.

The surgeon did say that incontinence could be upwards of 30% post surgery. If it extends my life, I believe I can deal with it, or at least hope so.

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This is why they do not want to operate on my husband. My argument was that if the prostate and lymph nodes are producing the cancer cells why not remove it and the treat the mets as they appear. Doctor said no ways, it would not work.

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Hi Doug,

Unfortunately, there are no treatments I know of that don’t have side effects or risks involved. Do you have any distant metastases? Once the proverbial horse is out of the barn the cancer is incurable and from what I was told by my oncologist, there is no point in doing localized surgery to remove the prostate gland. (I was Stage 4 oligometastatic at diagnosis 3+ years ago). If the cancer has already spread beyond the confines of the prostate capsule, there are circulating tumor cells in your bloodstream and lymphatic system. That is why Stage 4 patients with bone mets skip straight to systemic treatment with ADT and either chemo (usually with docetaxel), or Zytiga + prednisone for the systemic disease. The ADT+ protocol will help shrink the tumor and relieve some of the symptoms. At that point local treatment is purely palliative, to help relieve symptoms...like frequent urination. From what I’ve read, surgery is not the best option for local treatment in that scenario. More likely, focused radiation (SBRT, etc.) is a better choice. Some places use cryoablation or HIFU to help relieve urniary problems. All of these options still have the possibility of some nasty (and sometimes permanent) side effects to urological and sexual functions. A much less risky starting point is to try oral medications. My doctor put me on Tamsulosin HCl (brand name Flomax) a year or so ago. It has worked very well for me. I went down from 5 (or more) trips to the bathroom every night to 2 (3 at worst if I drink too much water in the evening). I can get uninterrupted periods of sleep of 3-4 hours. It makes a big difference because there is far less interruption to my normal sleep cycle (every time you get up to pee, your circadian rhythm starts over). Anyway, good luck to you with whatever course of action you decide on.

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I’m not sure was distant metastasis means. If that means did mine spread, then yes. As far as we know for sure, to the lymph’s. I’m trying to get information about thus clinical trial surgery. What benefits would I have to have this removed. I’m past the local. Anyway, you probably answered me already, I’m just a little slow!!! Thank you and keep on fighting!

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hi Doug,

I think that distant metastasis means that it has moved beyond the regional lymph nodes (ie to the bones, brain, or visceral organs). I am really not sure what they consider it if the metastasis is local...confined to the local lymph nodes, or if at that point the cancer is still curable. a good source for that answer if Tall_Allen. Usually they do a PET scan to determine if there are any hot spots on bones, where the cancer most often spreads to first. My experience withTamsulosin HCl (Flomax) to control the frequent urination issues, particularly at night, but also during the day, parallels that of chillywilly. He has had a lot of success with it, too, and it does make a big difference in quality of life. Best wishes! Mark

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Hi Doug47, I agree with Litlerny. I’m 52, Gleason 9, PSA 150 at diagnosis, with metastasis, lymph nodes, not in bones. I consulted with several doctors about removing my prostate and they pretty much all said that it was unlikely to make a significant difference given my metastasis. Same with radiation. I have been on Lupron, Zytiga + Prednisone since March. PSA at 0.1 since June. Frequent urination is what lead to my diagnosis in the first place. I started taking Flomax (Tamsulosin HCL) and frequency is now manageable. I get up once, maybe twice in the night. And during the day they are not at urgent as before.

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Your diagnosis is the same as mine. My MDO tells me the same thing. I’m trying to get as much advice as I can on this site. BTW, if it wasn’t for this site I would have lost my mind. Thank you for sharing, I really mean it. This is new to me even though I’ve probably had this for a long time.

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Doug, I don’t want to appear negative, but as one who faced metastatic prostate cancer in 2004, I have a series of questions to ask, not knowing age, health, and primary treatment for advanced prostate cancer.

What does your Oncologist - Medical or Radiation, say? I ask because after initial diagnosis, I really don’t know that a surgeon is prepared to treat other than give an injection of Lupron. BTW, the best advice I got about frequent urination - I have been on Flomax twice a day since 2004 - take Sitz baths, relax and pee away in the water. Initially there were days and nights where I took four. The advice came from the Radiation Oncology RN. In discussion I confirmed this with my Radiation Oncologist and, most important, my WWII Army Nurse mother. :)

I still have my prostate. It’s fried, but it is still there as my primary treatment was Brachytherapy and 25 sessions of IMRT which failed inside of a year. Both of my Radiation Oncologists told me that anyone could treatment me with Lupron, however, in my shoes, they would both fond the best Medical Oncologist available who’s primary focus was research and education specializing on in Genitourological cancers as they be the latest treatment available.

Good luck, take those sitzbaths and Flomax and you will feel a whole lot better. See a metastatic pro,

Gourd Dancer

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Thank you, I’m 47

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my hubby went from going 4-5 times a night down 2 a night. Flomax really works and he no longer has that urgency during the day time.

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Reply to Doug47:

We all thought we would go crazy and you know what? We did. Now calm down take the advice about Flomax. See the best Oncologist you can. In fact if you let us know your location then maybe some of our experts here can refer you to a good Oncologist in your area. Take care and thing of other "stuff" to keep your mind off of your Pca.

Try Humor!!!

Good Luck and Good Health.

j-o-h-n Wednesday 10/10/2018 6:47 PM EDT

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Skagit valley Washington, Northwest

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Sorry but I did ask you that before... stupid me... That's way way up in the boonies... Seattle would be the best I guess...But that's also quite a distance... Hmmmmm

Where are you going now for your Pca? I see that you're going to a Urologist, like I said see an Oncologist asap. I know you're 47 but with all the new meds coming out you'll make 74 easily and I would expect you to hit 84. Wanna bet me on that? Remember to laugh because the more you cry the less you pee.

Good Luck and Good Health.

j-o-h-n Wednesday 10/10/2018 9:38 PM EDT

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Lmao, you rock John! I’m thinking 87!!!!

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Our doctor said 5 - 8 years survival. My husband is 65. We hoping for longer of course. If he is strong like his mother, she is 90 and just had two heart operations and still going.

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Okay 87 it is.... but I wish to withdraw my bet....

Good Luck and Good Health.

j-o-h-n Thursday 10/11/2018 6:05 PM EDT

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Hi Doug 47, it is a big decision to have it out or not i know but my own experience was to keep the prostate for the reason of wanting a child with younger wife so i went for radiation. As luck would have it my beautiful daughter came along not long after.

That was my reason for not having it out apart from the incontanence problem.

Today i look back & think maybe i should have had it out before the PC left the prostate for lymph nodes & beyond as i friend of mine did at around the same time & he is cancer free to day.

We are all different & a good MO can make all the difference.

I had LU-177 four weeks ago & today is first blood test so hoping for the best.

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Thank you and you got this!

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Wow Aires, that is awesome that you were still able to have a child. Unfortuantely for us it's too late. There is a 20 year age gap between hubby and I. We had already tried two IVF's when this diagnosis came along. I keep telling hubby he will still be around for a long time and I would like to adopt now he still needs some arm twisting.

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Hi Ldb01, i believe having children around opened my life up for me so why not go for adoption. Some things in this short life never have a chance to repeat so go for it.

It is a beautiful life & even better with children to compliment.

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to: Ldb01,

I'm available.... and I'll supply my own depends....

Good Luck and Good Health.

j-o-h-n Thursday 10/11/2018 6:11 PM EDT

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Lo these many moons ago, long before I had cancer, my wife said "he's eccentric." My father-in-law said "he takes some getting used to." My sister-in-law said "he's weird." Nothing's changed, j-o-h-n is right - use humor! Even with apc, it still is a beautiful life. Enjoy it!

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Hey Doug,

You are 100 percent right about this site. It is a great help to me, and was especially so in the beginning. Just to reinforce what others have said, you must surround yourself with the best medical team you can. That doesn’t just mean well qualified doctors. It means doctors who are specialists in pca and to whom you can relate and trust. And of course the second and third opinions. I “fired” my first two oncologists, mainly because I didn’t feel they were looking at me as an individual, only as a patient. Talking to my urologist about this he told me, if I had what you have, I’d go see Dr so and so. Best advice ever. Good luck my friend. Stay positive, have some fun with this beast. Don’t let it control your life. Let your life control it.

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Thank you! Good advice!

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