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being aggressive

halfwayhome
Posts: 9
Joined: Jan 2012

Seeking opinions on my current choice of treatments. Age 48. Current PSA 42. Biopsy done in Dec. Fourteen samples taken, seven from each lobe. All positive for cancer. Second pathology lab confirmed. Clinical stage T2b/c. Prostate volume 43 percent. Gleason score 9 (5+4). No metastasis found yet. Dye enhanced CT scan, bone scan and spinal x-rays tests all ready done after the PSA and PCA3+ tests. prostascint test scheduled. After researching treatment options with my urologists and on line, I have decided to treat this disease aggressively. I am aggressive by nature and in excellent health outside of the prostate cancer. I have started management treatment of hormone therapy to try and stop the growth. I am considering also having a cure treatment of radical/open prostatectomy. I am aware of the possible/probable side effects. Second opinion doctor visit at the Mayo clinic next week. Has anybody tried these blended treatment options? What were your results? If interested my full story is in CSN under member user name halfwayhome.

prezmic
Posts: 36
Joined: Jul 2011

Let me give you my 2 cents before others give you their $1.50 advice. I have been reading these forums for a year now. I can only base my opinions on the patterns I've seen. I know this is flawed in that not everyone who has PCA with various treatments is on this site. And usually, the ones who write are the total successes or the troublesome ones. I would be mindful of the troublesome ones.

Short story on me - diagnosed in April 2011-53 years old(PSA 9.6 G 3+4), IMRT treatments in Oct 2011, BT in November2011. I strongly considered surgery because "I was young enough to handle the surgery and effects" Urologists usually recommend surgery. The 3rd one I saw advised me to see a radiologist to cover all my bases. I'm glad I did.

Your decision to treat this aggressively is wise. Your numbers indicate this to be the case. Agressiveness takes several forms in PCA treatments. Hormone therapy is usually the first step, the second is debateable. Open surgery is a very agressive approach but there are others. My decisions were based on anecdotal readings on this forum. Seems that it is quite common to have surgery - discover that it was worse than initially diagnosed - or your PSA numbers almost always returns - then you end up with salvage radiation and further hormone treatments. In the meantime, you have a strong probability of having to deal with incontinance and ED. Radical removal almost guarantees this.

I am too young to wear diapers/catheters for the rest of my life. You are too young. I did not want to take the chance that my quality of life would be negative. Some people say that surgery is the first step and you can always follow it with radiation if needed. I say - if there is even the remotest possibility that I will have to have radiation as a salvage therapy - then make that my primary treatment and skip the problems associated with surgery. Having a leaking, non-functioning organ was too big a risk for me to spend the second half of my life.

I believe that RT can buy you many years of remission, if not a cure. HT can also prolong this. That is what I am counting on. Removal is not a guarantee of cure. There is a strong probability that RT and HT will eventually follow surgery anyway.

We all have made our choices based on our own unique circumstances. We all want to believe that our choices are the best - for us. I am not advocating any treatment plan, just giving you my 2-3 cents worth.

I wish you the best. Good luck.

simonlord
Posts: 1
Joined: Jan 2012

Aged 50 and with a PSA that had risen from 4.8 to 5.95 in five months I had a ten needle biopsy. Nine had tumourous cells, average 65% per sample, Gleason 4+3 on one side, 3+4 on the other. Scans showed no spread beyond the prostate.

I had robotic surgery with no prior medication. The post-op analysis found a tumour 20mm long and 7mm in diameter through both lobes.

I was continent immediately (I was and still am a fit, slim runner) but I have ED. I knew that ED was likely, though it may be improving (surgery was 14 months ago). I ran a half-marathon 16 weeks post-op with no problems.

Good luck.

shadowman
Posts: 16
Joined: Nov 2011

I was diagnosed with aggressive prostate cancer in Nov 2011 I had a psa of 16.9 and my

gleason score was 9 all scans were negative My uroligist went over all my tests and

what treatments are available He said he would not recommend surgery In my case with

the high gleason score and the fact it did appear like it had penetrated the prostate

wall If I choose surgery I would still need radiation and he said studies have shown

that in cases like mine There is not a benefit to having surgery Hormone treatment and

radiation will provide a better benefit with less risk I started on Hormone treatment

on dec 10 with 2 shots of FIRMAGON I then had another shot of Firmagon on jan 10th I

have not had any serious side effects little pain at shot site minor hot flashes

which are annoying but tolerable I will be switching to Trelstar on Feb 7th this will

be a 6 month shot. I had my meeting with the radiatin oncologist and he wants you on

Hrmone treatment for 3 months to shrink the prostate as much as possible so I will

start Radation around the first week of march He is planning on 9 weeks (45 treatments)

of external Beam radiation to the prostate and surrounding area. He also has recommended

at least 2 years of Hormone treatments Good Luck to you

halfwayhome
Posts: 9
Joined: Jan 2012

Thank you all for your replies. I'm getting exactly what I hoped. Other men with similar experiences and their decisions and results so far. I believe a wise man will make his own decisions, but part of that process is gathering as much information as you can and listening to the opinions of others with similar circumstances before making his own decisions. Thank you all again for sharing with me.

Dr_Jeff
Posts: 10
Joined: Jan 2010

Firstly, I commend you for trying to get as much information as possible before making a decision. With so many options, the process can seem overwhelming. I was 46 when I was initially diagnosed via a fluke. My PSA was over 23 with a Gleason of 7. I opted for robotic surgery at the City of Hope which found that the cancer had spread to one seminal vesicle. Following surgery, I started aggressive radiation and then two years of HT (Lupron, Casodex, and Finestride). I had some hot flashes that were mitigated by Effexor, a common prescribed anti-depressant and ED during treatments. I was never incontinent and my erections returned once the HT ended. Last year, we celebrated my fifth year of PSA's <.01. Of course, looking back, I would not have changed a thing to my approach. I hope this has been helpful. The best of luck to you.

hunter49
Posts: 204
Joined: Oct 2011

Ho Jeff.  Did you start radiation due to posative margins or just added precaution?

hunter49
Posts: 204
Joined: Oct 2011

Sorry to hear of your diagnosis. I just had a robotic RP November 10 2011. I was dry out of the gate and get speratic erections. I had them as soon as 2 weeks after surgery. Howwever, I am far from back to normal but hopefull all should return. I am 49 and was diagnosed with a PSA of 4.1 and a biopsy with 1 out of 13 cores posative. High volume and Gleason 3+4. All scans clear and post surgery all margins, lymph and seminal vessels clear. However, a second small tumor found in other lobe a 4+3. I am glad I had the surgery and have met 7 other young men (45-52) who had surgery and all recovered well no incontinence and only one has ED. He also had issues prior to surgery. At your numbers there is a good chance the cancer has escaped even if all margins are clean, through micro-metastis. If I had that I would have not had the surgery and done hormone and radiation. That was also the advise given to me by all 7 doctors I saw including Partin at Johns Hopkins. If you do surgery I would do it robotically not open. Good luck to you either way.

Mikes2990
Posts: 6
Joined: Jan 2012

I'm 54. I was diagnosed 10 months ago. My Gleason was 9 (5+4). I am T3n1. My bone scan was clean. I had some metastasis in one pelvic lymph node.
I chose the MOST agressive option. I figured I might as well go balls to the wall.
I got the hormone ablation treatment and I'm still on it.
I got a radical prostatectomy.
I got 6 rounds of chemo, on the assumption that there MAY be undetectable micrometastases.
I got 40 doses of radiation.

This is every known treatment.

My cancer is currently undetectable.
If it does not recur, I'm cured and I might live to be 100.
If it recurs, I'm incurable and I have about a year.

My thinking is this: hit the cancer with everything you got. Hit it now, not later. Chemo is every bit as awful as they say but its better than being dead. Chemo this early is very unusual but my doctor has has some good results with it (Dr. Moskowitz, Naples Fl). Yeah, it sucks that I'll need Viagra or something because of the surgery, and the radiation is very fatiguing, but what is there to lose?

My thinking was that I don't want to look back if I get incurable metastatic cancer and say to myself, I wish I had gone ALL the way when I could.

This kind of cancer is a real gut check.

Good luck.

Mike

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Mike,

Welcome to the forum.

Your diagnosis at the tender age of 54 is certainly a tough pill to swallow I understand why you through the kitchen sink at it. The vast majority of us (men with prostate cancer) never have to deal with a diagnosis as serious as the one you received and we certainly can't walk in your shoes or second guess your choices. I hope everything comes out as you wish and that you keep us posted of your process.

K

ralph.townsend1's picture
ralph.townsend1
Posts: 353
Joined: Feb 2012

 Sorry for your condition, but a question. It's seen strange to use Chemo against Prostate cancer at your stage. I ask for Chemo from MD Anderson doctor's and they said there is no chemo for PC in the pelvic lymph nodes. The PC has to move into a main organ like lung, brain, etc to use Chemo. The PC micrometastasic of the Pelvic Lymph nodes is in all lymph in the body and you have to wait for it to metastase for chemo.

I have a simular cancer to yours, and MDACC has controlled mine since 2010 and kept it in my pelvic area.

Mikes2990
Posts: 6
Joined: Jan 2012

I'm 54. I was diagnosed 10 months ago. My Gleason was 9 (5+4). I am T3n1. My bone scan was clean. I had some metastasis in one pelvic lymph node.
I chose the MOST agressive option. I figured I might as well go balls to the wall.
I got the hormone ablation treatment and I'm still on it.
I got a radical prostatectomy.
I got 6 rounds of chemo, on the assumption that there MAY be undetectable micrometastases.
I got 40 doses of radiation.

This is every known treatment.

My cancer is currently undetectable.
If it does not recur, I'm cured and I might live to be 100.
If it recurs, I'm incurable and I have about a year.

My thinking is this: hit the cancer with everything you got. Hit it now, not later. Chemo is every bit as awful as they say but its better than being dead. Chemo this early is very unusual but my doctor has has some good results with it (Dr. Moskowitz, Naples Fl). Yeah, it sucks that I'll need Viagra or something because of the surgery, and the radiation is very fatiguing, but what is there to lose?

My thinking was that I don't want to look back if I get incurable metastatic cancer and say to myself, I wish I had gone ALL the way when I could.

This kind of cancer is a real gut check.

Good luck.

Mike

Kenster
Posts: 1
Joined: Jan 2012

I was diagnosed with gleason 9 prostate cancer in June-2011. Went to Orlando to have the robotic assisted surgery. Post surgery found positive margins and invasion of the seminal vesicles. I returned home and eleven weeks later I began radiation treatments at the Mayo Clinic in Jacksonville. Mayo doctors said it would not be beneficial to start hormonal therapy at this time, so why put up with the side effects. When I returned to Orlando for my followup visit, my surgeon was surprised that I was not on the hormonal therapy. He said with gleason 9 it was very important to be on the hormonal therapy as soon as possible. That scared me so I returned to Mayo and had my doctor there call the surgeon in Orlando. They talked for a while, but at the end they still disagreed on the treatment. The Mayo doctors explained their view to me again, but said it was my decision to make. I decided to start the hormonal treatment, even with the side effects. I was scared and I thought it would be better to do too much rather than too little. Since then I've been reading a book by Patrick Walsh entitled "Guide to Surviving Prostate Cancer". He refers to some large studies that show no benefit in early hormonal therapy unless it is done in combination with Radiation Treatments. I guess I'm telling you this because I think you will find that doctors will not all agree on the best treatment for you. You will need to get several opinions and then use that info to make your own decision. Good luck to you and God Bless You.

halfwayhome
Posts: 9
Joined: Jan 2012

Since I last posted several things have happened. I chose to start hormone therapy immediately. Firmagon. Bone scan showed a spot on my spine that looks like degenerative bone disease, not cancer.CAT scan reveled cancer in the lymph nodes around the kidney's. Consults with Rosewell cancer center and the Clevland clinic gave me the same results on the tests and the doctor's opinion. Hormone therapy to try and stop the growth and buy me 5-8 years.Nobody willing to due the surgery to remove the prostate and "descale" the lymph nodes around the kidney's. At 48 I am not satisfied with this response. I found a surgical research uroligist named Dr. Jeffery Karnes at the Mayo clinic in Rochester, Minnesota. After a visit, he agreed to do the surgery with stipulations. Lose 25 pounds,quit smoking and six months of hormone treatments and PSA moving downward. Two months later (my first hormone treatment was in late Jan. before I saw Dr. Karnes) after pre-treatment PSA of 42 I have tested at 3.6 in Feb. and 1.8 in March. I just recieved the third shot of firmagon. I have lost 20 of the 25 pounds in two months through a life changing diet and I WILL kick these cigarets in to a bad memory starting April 1st.I am trying for surgery in the second week of July. Three weeks ahead of schedule.Even Dr. Karnes estimates 10-12 years with the surgery. That's only 60 for me. NOT enough. My youngest grand daughter just turned 1. I WILL at age 69 watch her graduate from college if she decides to go. If she doesn't go to college, together we will have one HELL of a celebration four years after she graduates high school anyways. I will have a blast with my grandkids and maybe even greatgrand kids. I strongly encourage everyone out there with this demon to fight with everything they can and BE STRONG!

hunter49
Posts: 204
Joined: Oct 2011

Great attitude. Love it. I hope to be here to read your post when yuor 69

halfwayhome
Posts: 9
Joined: Jan 2012

Surgery on 07/26/2012. Removal of prostate.seminal vessel and 55 to 60 lymph nodes all the way up to my kidneys. Somof the cancerous lymph nodes had mutated and became hormone resistant and continued to grow. Dr. Karnes removed all cancer he could find. Post PSA is still undetectable two and a half months after surgery. I am healed up from the surgery. Unfortunately. I have developed a post surgery complication called Chylous acides. This is caused by a massive leakage of fat from the removed lymph nodes leaking into the pariteniam cavity. I was hospitalized locally for 6 more days. I am currently on a diet of 10 grams of fat Max/100 grams of protein minimum per day. Initial pariteniam cavity drain produced 6 and 1/2 liters of fluid. Seven drains later with a 2 week insurance company battle for a medicine I belive the draining is starting to slow. Very little info available out there on Chylous Advices. Almost no case studies. Mostly individual case results. So far besides the afore mentioned diet I am on Octreicide 100 mfg twice a day. The diet SUCKS and doing a self injection twice a day isn't much fun either. But it is seems to start to be working. I am only drained every ten to twelve days now and they only get about 2 and a 1/2 literal now. I am hopeful to be able to return to work within a month or so. I am ready to start the next chapter in my life. What ever it brings I'm ready. BE STRONG !!!!

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Thanks for updating us! Of course though sorry to hear about your ongoing problems.
Had never heard about Chylous acides so thanks for educating me on something new!
lewvino

marieinlv
Posts: 40
Joined: Aug 2011

When you have the ascites drained repeatedly, your albumin level starts to drop because the ascites contains a lot of protein. With repeated drainings and an albumin level that drops too low, your tissues can no longer hold fluids and this will exacerbate the ascites. I was finally put on TPN when my albumin level dropped to 1.0, and it was a hosptialist who put me on it, not my oncologist. Sometimes I don't think the oncologists recognize the essetial things that their patients need. Once I was on the TPN, the ascites dried up in a week and a half and in hindsight, I think it was the low albumin that was causing it most of the time.
Good luck
I'm not very good at the copy/paste. I did that from another discussion. I believe this could be good info for you. Hope this isn't considered a no no to the one who wrote it. Hope you feel better soon

VascodaGama's picture
VascodaGama
Posts: 1573
Joined: Nov 2010

Halfway

We PCa fighters do really need the strength to overcome each battle along our journey. I want to congratulate you for the undetectable PSA.
Hope you get a rest from the problem with the lymph fluids. I had drain pipes in place for three days to get everything out post prostatectomy.
Wishing you better times and continuing recovery.

VG

halfwayhome
Posts: 9
Joined: Jan 2012

Two months on the aforementioned diet and one month of the octricide injections and I'm much better. I'm going back to work on Nov. 11th. No other problems. The diet and octricide will continue for three or four months. I can deal with that. 90% control of bladder now. ED continues but their are positive signs and I'm starting on Cialis. No paratenisis needed since I started on the octricide. The current game plan is a Lupron shot every six months with a PSA test every three months and a CT scan every six months. Thank you everybody for your comments and sharing your experiences. I feel almost like my old self for now. I will continue to update. I hope others can benefit from my experiences on my continued journey. BE STRONG!!!!!!!

MLKisner
Posts: 14
Joined: Oct 2012

My husband was diagnosed 1 year ago age 51 now, Stage IV metastatic disease, bone met on Pelvic bone with lymphnode involvement.  They immediately started him on Hormone therapy which was working for about 8 months, then we got the news that his lymphnodes in his abdomen were swollen that the cancer was being aggressive. They started him on Zytiga it has been 9 weeks and we just got back from Cleveland Clinic with Crushing news, PSA went up from 14 in Oct to 41, they are going to give him another month on Zytiga and re-check his scans and psa.  My husband says he feels great,better than he ever has but the Dr. was really negative and told us He would die from this he just didn't know when.  So then I read your post and it sounds like you have a Dr. that does other options, Where do you go for treatment can you offer me any suggestions advice Please, we have a 3 year old son and we want his daddy her to see him graduate if at all possible. God Bless....

halfwayhome
Posts: 9
Joined: Jan 2012

Six months post open radical prosectimy.The cause of the Chylous acides was the removal of 50-60 lymph nodes during the prosectimy. Ascides has healed up. I'm back to working full time at 44 hours per week. PSA is undectable. All GREAT things. Now dealing with the not so great things. Lupron shot every six months. Psa check every three months. Bone scan and CT scan once a year. Premerin daily high dose(.06mg) to control hot flashes so I can sleep. Still about 10% incontinent. Total sexual disfunction. At 49 and married for 30 years these problems are not small.but we are dealing with and trying to address them. I think I must have a golden horseshoe up my backside. LIFE IS ONLY AS GOOD AS YOU CHOOSE TO MAKE IT BE. MINE IS AWESOME!!! I hope many fellow Pcs patients choose to have an AWSOME life for themselves as well. BE STRONG!!!

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