Hello... having a bad day: Hello... - Advanced Prostate...

Advanced Prostate Cancer

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Hello... having a bad day

87 Replies

Hello everyone. Have been a member for a couple of weeks. I read the stories and had hope for my results. And just got my news. PSA 126, Gleason9, All 12 of of 12 samples are cancerous. Next step is a bone scan.... Has anyone have seen or had such a result. What r the prognosis???? Doctor said it is aggressive- August PSA 20- raised to 126 In November....

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87 Replies
YostConner profile image
YostConner

Obie,

Welcome. Please try not to despair. You may be facing a battle, but you have lots of living yet to do. Some men here, like myself, have faced similar or worse numbers and are still kicking. My diagnosis was over ten years ago. The standard of treatment has evolved in that time. You will have the chance to hit the beast hard. Please share your concerns and successes with us, and we will support you.

Yost.

Dan59 profile image
Dan59

Obie, I was dxed Gleason 10,Bpsa 148 stage 4 inoperable ,back in 2006, before everything that is new in Prostate Cancer Happened, Now we have way better science and better therapies. Many on this list have done very well with either upfront chemo with Androgen deprivation therapy(ADT) to reduce testosterone , Or with ADT with early zytiga. I would say with that low of a psa you may have caught it much earlier than many of us. I will hope that the bone scan is clear , and you can find the best of the best for whatever local therapy on the prostate you choose. How old are you? If you decide on Surgery for removal, get the best of the best surgeon you can regardless of travel , Hopefully that way it will reduce side effects and problems associated with prostate surgery, If you decide surgery You can still have radiation after, unlike doing radiation first, then you can not do surgery. This is a great group with lots of very smart patients, others will reply , please keep us posted with results for bone scan and treatments. We are all here for you.

in reply toDan59

Dan59. I made a mistake - PSA 126. Just hard to write while still processing... not easy

Dan59 profile image
Dan59 in reply to

Even so, Many on this list have had psa higher than that , And done very well with the upfront current therapies, gotten psa to undetectable. I suggest that it would be the right time to be in the care of a Medical Oncologist, Preferable one at a major teaching center,where are you? I would say with that psa it may be good to start adt with either chemo for 6 cycles or zytiga and adt, try to knock it back to undetectable psa.

As Yost said you still have a lot of living to do, We are all here for you.

in reply toDan59

I am in St Pete Florida and with USF health Team

I wish I were as lucky as you. I started out with a psa at 850, 3 bone mets and my lymph nodes were a 24/7 cancer operation. Fast forward 3 years, (present). Bone mets barely visible, (no new ones), All lymph nodes back to normal size and psa at 0.09. It just went up from 0.07 darn it. Did the Chemo thing, Been on Lupron from the start. Prognosis, I'm not a doctor but, your just getting started. Psa at 14? That's lower than my dogs and he is still jumping the fence looking for romance. Chill, relax, the Grim Reaper has no idea who you are and won't for a long time. Get ready for years of drugs being pumped into your arms, rear, mouth and any other areas those wild looking doctors can find. Now if you have a full length mirror in your house, get in front of it and do your victory dance. I'm going to let other members tell you about finding the best oncology doctor ever to grace our fair water planet. Yes I'm a smart Alex.

Of course what do I know?

PSA 463 here. Doing great after 1 year of ADT plus early Docetaxel. My opinion is: agressive cancer = aggressive treatment. An agressive treatment to consider is ADT plus early chemo or Ztyiga. Both have been proven to add around 13 months overall survival. You can check out the results of the CHAARTED, STAMPEDE and LATITUDE trials.

Sorry you have found yourself here, but keep in mind: your chances of having good results from treatment are high. My PSA is now .33 and I was pain free in 3 weeks after starting treatment. That was amazing considering I was in a lot pain, barely walking. My bone scan has more lights than snoopy's dog house on the Charlie Brown Christmas.

Good luck wth your treatments and keep us informed. We are here to support our brothers in need.

PS.

PSA at diagnosis is not a predictor of overall survival.

what a special feeling to know that we are not alone. Thank you. Obie’s wife.

in reply to

That was the hardest thing for me when I was first diagnosed. That feeling of being alone. Everyone around you tries to help, but you really need those who have been there. They can help you in a way that no one else can. Glad you found this group.

I would recommend trying to find a face-to-face support group if you can. They are very valuable for support.

ronnie1943 profile image
ronnie1943 in reply to

Hi Obie's wife, my name is Lynn,sorry about your husbands new findings.im writing from a hospital room, husband had a removal of suspicious lymph node this past Frid, the 19th they are pretty sure it's cancer Husband, Sam started this journey ten years ago. PSA 483 at that time. Operation on arm to remove tumor. Went this past ten years on hormone shots and casodex pill. Cancer came back this past year, kidney tubes, bags, twelve chemo treatments and six weeks radiation, long story.

Your husband may go through some bumps in the road, but there are so many treatment etc. He will be here for many decades.!! Take care, keep us posted. And yes you are not alone everyone is here for you!!

Best wishes coming your way.

Sincerely, Lynn

.

in reply toronnie1943

Hospital.. I’m sorry. Hope its going well. his going through the bags and tubes and so much suffering . I KNOW all that that entails...my wife is still a little scared to touch me because during that time she couldn’t.. My hats off to you and all of our partners who suffer along with us every step of pain.. without you we would be lost. Grateful we should be.. I am.. To have such love in my life also.. praying for positive results and to be home soon . God bless!

ronnie1943 profile image
ronnie1943 in reply to

Thank you, home now and will know test results this Friday coming up. I'm so happy I have all this support!!

in reply toronnie1943

Very good you’re home,restart the healing.Waiting for positive results..It is amazing what modern medicine can and cannot do.

ronnie1943 profile image
ronnie1943 in reply to

No place like home! Sam asked the surgeon if he could tell if the lymph node he removed was cancerous, His answer was, "quote" I'll tell you this it didn't look

Normal ?? Sam has two others but the abject was to remove the big one, get a biopsy and see what course of treatment? I'll let you know after Friday.

I'm thankful for all the doctors, the surgeons, and this site too, also people like you that understand.

Thank you, Lynn

in reply toronnie1943

Best luck on the biopsy. Welcome home..

ronnie1943 profile image
ronnie1943 in reply to

Thank you.! Will find out this Friday!

Lynn

One more thing. If you don't already have one, get yourself a kick-ass attitude.

Dayatatime profile image
Dayatatime

The words "you have cancer" is something no one wants to hear and is devastating. As hard as it may seem when this is dealt to you, there is a ton of hope. Do not let statistics cloud your head and the advancement in treatment is almost daily. Just in the 2 years since I was diagnosed paradigms are shifting. There are no 2 people with any type of cancer that will handle treatment the exact same. It is a very individual disease.

You need a specialist in a major hospital that treats this disease with the most current of care. A specialist will be using the most current data and depending on your case will use unconventional treatment possibly beating this thing down to submission. See a specialist even if it means traveling to do it.

There are many men on this site defying the odds and years away from their initial diagnosis. Bottom line is they made that happen by never giving up. Learn all you can and this site will be one of the biggest assets you have. The men on here are hardened prostate cancer warriors and will go out of their way to help you find an answer to any question.

Ron

ronnie1943 profile image
ronnie1943 in reply toDayatatime

Hi, Well written ! Like that name, my sons name is Ron. I agree cancer is a very individual disease. I'm Seventy three and a care giver, not to good with using a computer etc. gives an iPad for Christmas A year ago, so happy I found this site by accident. Well enough for that!! Husband Sam has been fighting this disease for ten years now,. up until this past year we were lucky, the cancer came back with a vengeance, long story, this recent hospital stay just this past week took suspicious lymph node out . Waiting for the biopsy to come back, see what treatment is next. This past year, twelve mo this of chemo, six weeks radiation, kidney failure, had tubes, bags for six months.

Best wishes coming your way.

Sincerely, Lynn

db1966 profile image
db1966

Hello Obie. December 15 I was diagnosed stage 4 with 212 PSA. Almost 2 years to the day I am 0.2 PSA. Started with chemo and. Lupron. Now on Lupron and Zytiga. No pain and feel great. (52 yrs old). It’s a long old journey but I have a great family and support system. Join the Prostate Cancer Foundation They have a great support system and all the latest medical updates and excellent articles.

Good luck. Your not on your own.

Regards

Dermot.

in reply todb1966

Thanks. I started Eligard (Lupron generic) yesterday. My PSA went from 126 to 85 with just the Casodex.. On 15 Jan, getting a PET CTscan to validate the lymph nodes, which appear affected on a pelvic CTscan.

Don1157 profile image
Don1157

The first thing I learned here is there is much knowledge and compassion here, the next was that even though it is scary to hear the C-word, you have a lot of living left to do, a lot of treatment options, and yes support for your spouse too. Good luck!

Beauxman profile image
Beauxman

My biopsy showed Gleason 10 in all cores. My one regret is that I didn't recognize the fact that having most samples consisting of nothing but cancer from end to end was a big clue that the cancer was no longer contained within the prostate. I should have skipped the non-nerve-sparing surgery and started with treatments that had at least a small chance of allowing some continued erectile function.

in reply toBeauxman

You are correct. I was same.Prostate completely blown out with pc tumors.no point in surg..so far success with Adt & RT...we and the dr’s make the best decisions that we can at the time. It’s all a crap shoot.

Sisira profile image
Sisira

Obie, All the warriors who have rallied round you starting with Yost give you enough proof that you can take the "Bull by its horns". Soon enough learn all the ways and means of hitting the beast as hard as possible. I know a man aged 75 with PCa of GS10 starting his battle @ PSA15,000 chopping his enemy with many swords, living as of today proudly to tell his incredible story at 83, almost after 8 years. Never fear anything and fight for your life!

Wish you good luck, Merry Christmas and Happy New Year!

Sisira

in reply toSisira

Thanks

auroracham profile image
auroracham

Hi Oboe. Perk up. Mine was 105 in July. 11 cancerous samples, Gleason 9. Now PSA 3.47. Hope it keeps going down. Lots ahead, but join three fight and have a Happy New Year's.

Paul

in reply toauroracham

Thanks Psul

WinnipesaukeeBob profile image
WinnipesaukeeBob

Had exactly the same results in March 2012 and I lead a good life as the year ends in 2017. You can do very well, fighting along the way, but enjoying many of life’s greatest pleasures.

Today PSA is .8 (down from 126), two small bone mets, and no bone or tumor pain.

You will have a year of pretty intense treatments guided by your scan results, probably surgery or radiation of the prostate along with hormone therapy. You will be tired often and hurt occasionally, but not dead or incapacitated. And you will recover and manage the disease well for a long time.

Hope the rest of your Christmas season is going well. You are tough. God is good. And we are here.

Bob

in reply toWinnipesaukeeBob

Thanks Bob. Getting a PET CTscan on 15th to check the lymph nodes, a few if which are moderately enlarged and probable fir cancer. Bone scans negative.

EdBar profile image
EdBar

Hey Obie, I was diagnosed in March 2014, stage 4, with mets in my spine, ribs, sternum, pelvis and nodes. My biopsy showed 10 of 12 cores positive, Gleason 9. I took an aggressive approach in my treatment and have had an undetectable PSA for almost 3 years and my scans are clear, I'm not cured, but for the moment I'm kicking butt.

A lot of your next steps in treatment will depend on your bone scan results. And I recommend you get with an oncologist who specializes in PCa.

Good luck on your journey, it's not easy but there's lots of treatment options these days and more in the pipeline. Learn all you can and be your own advocate.

Ed

in reply toEdBar

Thanks Ed. Getting a PET CTscan on 15th to check the lymph nodes, a few if which are moderately enlarged and probable fir cancer. Bone scans negative.

UpstateNY profile image
UpstateNY

Obie, hope people will post recommendations for treatment centers. Here are a few: don’t know where you are, but in the New York area an option would be Memorial Sloan Kettering, where I went — first visit is with a medical oncologist for assessment. Mayo for AZ, FL, or MN. Johns Hopkins in Baltimore. UCLA.

Others will have ideas also.

As onedayatatime said, get the best you can find. For surgery especially, the

most important variable is the experience ofmthe surgeon — mine does 200 prostatectomies a year, 2500 lifetime.

in reply toUpstateNY

Looking at Dr Vipul Patel, Florida hospital. He has done 10,000 robotics

chascri profile image
chascri

Hang in there you likely have a lot of living left to do. I was diagnosed at age 55 in1999 with a gleason 8, and yet here I am. At a party recently someone ask me my prognosis, I told them it was pretty much the same as everyone else at the party, I was going to live until I died. You can find a summary of my treatment history in my profile. May the force be with you.

in reply tochascri

Thanks. Fighting

Skip47 profile image
Skip47

Bone scan, and I would think CT scan as well. This is the standard of care to determine whether the prostate cancer has spread outside the prostate. It's part of what is called a metastatic workup. Put your positive energies into those results-I will for you as well! If they are negative listen to your options, and move on your treatment as time is not your friend with the involved pathology you have-you have to act!

in reply toSkip47

CT scan showed enlarged retroperitoneal and pelvic lymph nodes suspicious for metastatic decease. Going for the bone scan in 2 hours...

Skip47 profile image
Skip47 in reply to

Don't know where my reply went-if you got it this will be a duplicate-fat fingers here, sorry! I'm wishing a big "negative" bone scan for you, hope that's the case. I know you are stuck with this being Saturday, and Christmas weekend, but bone scans are read quickly. If your ordering Doc is not aware you want to know results make sure you make that known. With Christmas being Monday if you have not heard get on the phone on Tuesday morning for your results. Then you can discuss the entire picture, and set your path for active treatment.

in reply toSkip47

Negative bone scan

Skip47 profile image
Skip47 in reply to

A good thing, pleased to hear your good news!

j-o-h-n profile image
j-o-h-n

OK now Mr. O'Brien,

Settle down... This is like Allstate, you're in good hands here. I know it's like, why me? Put all that kaka behind you cause you'll be around for a very long time. Laugh and have a good sense of humor.

Good Luck and Good Health.

j-o-h-n Saturday 12/23/2017 10:55 AM EST

(Now can anyone tell me why Santa Claus can't have any children?)

in reply toj-o-h-n

He had an orchiectomy?

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

Close, but no cigar....

Reason: He only comes once a year and when he does it's down a chimney...

Good Luck and Good Health.

j-o-h-n Sunday 01/07/2018 (my name day) 6:36 PM EST

in reply toj-o-h-n

Ha..ha..haaaa! Halarius. Thanks, Happy go lucky!!!

Jvaughan0 profile image
Jvaughan0

For a little while today, don't allow yourself to think of cancer or treatment options. Find something in your life that you cherish. Focus on that something or someone. Embrace the contentment that comes with that thought and breathe in beyond the fear that I know you feel.

in reply toJvaughan0

I did. I went to Homestead race track with my son and he set the track record and fastest lap in his kart race today. We will be back in track Thursday-Sunday fir the International race in Homestead. It was a great day. Focus pays off!

in reply to

You don’t mess around!

in reply toJvaughan0

Fantastic....

Shepard profile image
Shepard

Welcome to the group and congratulations for taking a positive step in this journey by joining our group. Truth be told (and that is what happens here) it is an individual journey because you make your own choices. It is helpful to know that there are others out there doing the same thing and sharing their experiences. I have been wearing the cancer badge since 2010 and hate it. I gave myself 15 minutes of pity time and set off to live life in new and interesting ways. Many years ago my wife and I were stranded on a dark road with two flat tires and one spare. What to do? My wife said we may as well dance and so we did until shortly a car came by and loaned us a spare and escort to help. This turn in your life will not fix itself by being ignored, but there are strangers willing to help. Recognize that the cancer will require lots of your time and when you despair take time off and dance. No, that will not cure the problem, but it will raise your spirits and give you strength to go on. Every day is a good day; receive the blessings.

Skip47 profile image
Skip47 in reply toShepard

Hey Shepard!

I'm actually Wayne although you, and everyone else sees me as Skip47. I'm at the 20 year mark myself, I'm a cancer clinician very involved with Prostate CA, and facilitate a Prostate Support Group. Absolutely good words you've put out there-nice job!!

in reply toSkip47

I second your praise.. coming from you that means a lot.

Glsn10 profile image
Glsn10

Hi,

I was diagnosed 2013 with Gleason 10, all cores cancerous and low psa.

I joined because I was looking for information when I was diagnosed for other Gleason 10 score guys to see what I could expect.

You can look at my profile to see our similarities. I was 53 when diagnosed and I just recently got out of the hospital after a change of my medicine for pain along with radiation to my pelvic area to help,with pain also.

There are many different treatments with new treatments coming every year.

Don’t get to down on yourself, we all respond differently but everyone is here to pass on whatever information and advice we can in an attempt to help each other.

in reply toGlsn10

I was reading through your treatment history and then realized that it was written 2 years ago. I'm curious to know what you've done between then and now.

Glsn10 profile image
Glsn10 in reply to

Hi,

After 4 treatments of Radium 223 I had cabazitaxel chemo and some radiation treatments for pain then back to chemo with mitoxantrone that lasted for 9 treatments that was stopped because of the damage risk to my heart. While on my break from chemo I ended in the palliative care unit of the hospital to re-adjust my pain meds and additional radiation to my pelvic area. That about covers the missing time. Thanks for asking.

in reply toGlsn10

Has it been contained? Diminished in any way ? Good luck. Obie

Glsn10 profile image
Glsn10 in reply to

No decrease in the diseased bones but on the bright side the metastasis has shown no growth since I did the mitoxantrone. Thinking I will retry xtandi starting at the end of this month and hope that I continue to keep the cancer from increasing.

Keep a positive attitude and try to do things that create memories for you and your family.

The best thing I did was take some trips with my wife and daughters. They will have those memories long after I’m gone.

My best wishes for you and your family.

Crmp55 profile image
Crmp55

Obie, we all start shocked. I have aggessive stage 4 . 5 years now, looking for many more and i' m 83. On lupron and exgeva, keeping the dog at bay.Started with radiation to kill cancer in prostate but it had already massed to bones. I'm not ready to give up yet, you have many years ahead.Hope I have helped you , just a little anyway. Keep the faith, you have found a lot of friends here.

in reply toCrmp55

Like your attitude, Sir!

JimVanHorn profile image
JimVanHorn

Hi Obie, Welcome to our group. I had been told in 2007 that I had PCa and that with 42 radiations I would be OK. Well in 2011 my PSA went up to 72 and they found I had a second more aggressive cancer. Gleason of 4+3= 7 the cancer had metastasized. I had 2 more biopsies (have them put you in twilight sleep) and they recommended 30 more radiations! Plus I started Lupron injections every 3 months and Casodex for the first 6 weeks. After two years my bones were brittle, so I had 2 injections each year of Xgeva (an osteoporosis drug). Then they stopped that after 2 years. It has been 6 years now and my PSA has been 0.00 for all 6 years. I am now 72 years old with other diseases: diabetes, heart, and kidney. My life is pretty good and I go places and do things like always. However, Lupron (Eligard the generic) removes all of my testosterone which has changed my sex life greatly.

So Lupron is a drug that tells your pituitary to stop making androgens in men and tells women to ovulate. It was used first by women who could not have children. In men there is and area on each of the prostate cells that is sensitive to androgens called the androgen receptor (AR). Both normal and cancerous prostate cells have this AR. If you remove all androgens, the prostate cells can not replicate, like cell division. So the PCa cells can not form tumors. They can still occasionally go into the blood stream and go to lymph nodes and attach to bones, but with time less of them can do that. They no longer can form tumors, because they can not multiply in the absence of androgens. On the bones they sink into the bone and leave a little pock mark, were they stay until they die. If the bone becomes weakened over years, they give you a shot or two of Xgeva.

This is the treatment I have chosen, but new drugs are coming on the market all the time. I have friends who have used radioactive pieces put into their prostate, but not when it is in all lobes like yours. They also have used cryogenics and freeze the cancer, but usually not with metastatic cancer. Now each of us have different types of prostate cancers in different lobes and some affecting other tissues in the area, so listen to your doctor carefully and ask questions.

I'm starting a new year (number 7) with a positive attitude. Happy New Year and go for it!

in reply toJimVanHorn

Very helpful. This is what I have learned by researching. I just had my first Eligard on 4 Jan. Getting a PET CTscan on 15th to check the lymph nodes, a few if which are moderately enlarged and probable for cancer. Bone scans negative. PSA went from 126 to 85 in last month on daily Casodex. We haven’t yet fully decided on treatment regimen.

JimVanHorn profile image
JimVanHorn in reply to

Well each of us has different form of cancer in different lobes with different ages, different other diseases and different insurances with different doctors. What ever your decision on therapy we support your decision and wish you well. Eligard really helped me, but for some of us we are "castration resistant", meaning the Eligard does not "fool" the pituitary gland into stop forming androgens. I wish you well my friend.

in reply toJimVanHorn

Thanks, from what I read it depends on type of BRCA cells.

JimVanHorn profile image
JimVanHorn in reply to

Well I know that BRCA genes can mutate and allow cancer to grow tumors in men and women, but Eligard stops Prostate Cells (PCa) from reproducing so they can not form tumors. What I was trying to explain is that Eligard in men has an effect on the pituitary gland at the bottom of the brain and tricks the pituitary to not making androgens. However, in some pituitary glands this trick does not work. These men are said to be "castration resistant" and they follow other regimes to stop the spread of PCa. For example women use Eligard to fool their pituitary and cause the release of mature eggs from their ovaries. This is used as a fertility drug with artificial insemination. However, often multiple eggs are inseminated and some children have serious birth defects. I love your questions so keep asking.

wpopomaronis profile image
wpopomaronis

Hey we all have bad days but keep your faith. I’ve been alive for 10 years and even though I had a prostatectomy as well as salvage radiation, I was never able to get the PSA under control. My PSA had gotten all the way up to 234 before the doctors put me on Zytiga about a year and a half ago and it went all the way down to 0.8. However as of two months ago that Drug has failed and I am starting the bipolar androgen therapy clinical trial at Johns Hopkins. There are a lot of bullets in your gun, don’t be despondent!!! There is so much happening, try to think like me, which is exercise eat right and stay healthy long enough for them to find a cure. OK :-)

Roland632017 profile image
Roland632017 in reply towpopomaronis

Hi wpopomaronis

Just read from your comment that you will plan on next phase of your journey.

Sorry to ask but you said 2 months back the Zytiga treatment after 18 months is now not working that is I understand you correctly do what is the last PSA reading.

It will keep us more informed.

Sorry about intruding into your affair.

Thanks

wpopomaronis profile image
wpopomaronis in reply toRoland632017

Sure, unfortunately it is doubling every month and has gone from 5 to 10 and is currently about 21. Hope this helps!

Roland632017 profile image
Roland632017 in reply towpopomaronis

Thanks. My last PSA on 11 December 17 is 19.93. I hope your next phase of your treatment will result in a better outcome.

I was looking to discuss about Zytiga and ADT with an oncologist on 15 Jan 18 and this might help in my discussion.

May I know also why after 18 months of improvement why it suddenly not progressing as well? What was your medical consultants opinion?

Thanks.

wpopomaronis profile image
wpopomaronis in reply toRoland632017

I had a very robust response to the Zytiga. I’m also pharmacist so I was pleasantly surprised. Some aren’t as lucky or some do better on xtandi. Good luck to you!

Roland632017 profile image
Roland632017 in reply towpopomaronis

Your participation is truly helpful.

Have a good Christmas and a Happy New Year.

Roland

wpopomaronis profile image
wpopomaronis in reply toRoland632017

You as well!

in reply towpopomaronis

Figjying

in reply to

Fighting

Stegosaurus37 profile image
Stegosaurus37

Can't add much to the above comments except try to live your life as close to normal as possible. I'm firmly convinced more people die of worry than anything else - don't you be one. It's still a good life - concentrate on the enjoyable parts.

I was thinking about your attitude when I wrote that. Funny though, lately my ass literally feels like someone kicked it. I think I've gotten into an ass kicking contest with the cancer. So far, I'm winning.

Dr_WHO profile image
Dr_WHO

So sorry that you are here but you will never find a better group of men and women. It is indeed scary when they not only you have cancer but that it is advanced. Trust me, I know that feeling. Yes your life will change. But also trust me, there are many reasons to hope. I can not count the number of warriors here that have advanced cancer. You would be surprised at how many are still here, even for decades.

You mentioned getting a bone scan. Hopefully they will also do a C.T. scan to see if the cancer migrated to the lymph nodes or other areas.

When you are dealing with treatment options there has been a lot of advances this year. First, even if the cancer had spread to the pelvic area surgery is still an option. When this data was first coming out I had to fight with my surgeon to operate. Now it is more accepted. Please look at the post from nameless. He had a great reference on this issue.

Chances are that you will be put on hormonal therapy. If so please google the Latitude and Stampede trials. They shown, using the words of the researchers, game changing results by putting warriors on a combination of Lupron and Zytiga.

Yes, having advanced cancer sucks. But it does not mean your life is over. I have gone on two Caribbean scuba trips and have put over 1000 miles on my bike. More important, I appreciate life and my wife that much more.

Finally, you are now one of us. You will never be alone. You have more people than you know praying for you. Like the song says, “people like us we have to stick together “.

in reply toDr_WHO

Dr WHO, thanks. Very helpful. I found those trials . I just had my first Eligard on 4 Jan. Getting a PET CTscan on 15th to check the lymph nodes, a few if which are moderately enlarged and probable for cancer. Bone scans negative. PSA went from 126 to 85 in last month on daily Casodex. We haven’t yet fully decided on treatment regimen. I am 55 with two young boys and a great wife to live for. One is a national karting champion and the other already winning in Florida. Lots to live for. I will feel better with a treatment plan.

Right now, I am predisposed, based on what I have read to remove the prostate robotically. I have a meeting with Dr Vipul Patel in 2 weeks. I hear if it’s in any lymph nodes that surgery is no longer an option. That’s what I am trying to validate.

Dr_WHO profile image
Dr_WHO in reply to

I was 58 when they found my cancer. It does focus your mind. However, even with all the treatments, side effects, etc., I now am closer to my wife than ever before. We no longer take life for granted and make the most out of every day.

Please know that there still is benifit to having surgery even if you are lymph node positive. That was my case back in Feb. 2016. I had to argue with the surgeon beforehand to continue with the operation even if they found a cancerous lymph node (which they did). Now there is more and more research showing improved outcomes with removing the prostate even if it has spread to the lymph nodes. Listed below are just two references. (Note, this advice is coming from a fellow cancer warrior, not an MD. My degree is in chemistry.)

redjournal.org/article/S036...

onlinelibrary.wiley.com/sto...

Yes, having cancer sucks. But you have every reason to believe that you still have decades ahead of you. In addition to your family you have a new one here, full of cancer warriors and caregivers. As the sone goes, “people like us we have to stick together”

in reply toDr_WHO

I will find out more after my PET scan on Monday the 15th. I have a consultation on 31st with Dr Vipul Patel in Orlando, a robotic specialist.

in reply to

Da Vinci ! Whichever treatment you choose, best of luck..

Scruffybut1 profile image
Scruffybut1

I've been down that path as have many others. GL 4+5, PSA 200, 12/12 cores cancer. Bone scan showed 40 bone Mets. MARI showed prostate 3 times normal. Lymph nodes in pelvic girdle eaten. That's the bad news but good news is 4 years later bone Mets gone, no soft tissue spread, ,PSA constant 0.03 or 0.04 for 15 months on Zytiga although 4 days ago rose to 0.05. Am I worried? Not at all.

in reply toScruffybut1

Well, that’s awesome. I hope my plan turns out similar

Thinus profile image
Thinus

Yes, it is schocking when the specialist shows you the the bone scan and you see the black spot on your pelvis. And even more shocking when he tells you 'I can do nothing for you, you are phase 4, go and see an oncologist'. My PSA was 901, Gleeson 8.

My advise to you. Take the first line treatment of Lucrin or Lupron injections together with a calcium drip. Your oncologist will explain to you the process of removing calcium storage from the cancer cell and replacing it intra cellular with other necessary calcium.

Second line treatment. Capsaicin (cayenne pepper) taken with lycopene ( tomato juice) has got a defnit efect on prostate cancer. I take 3 capsules (500 mg) in the morning and evening with tomato juice. I also take at least 1000 mg oil based curcumin every day. Also 3000 mg flaxseed oil every day.

I am healthy, work hard, don't know about my tubular prostate cancer.

To motivate yourself, type in 'artemether cures cancer' into Google and listen to dr Kevin Bethel of the Bahamas. I drank Coartem for 18 months, it totally cleared up the black spot on my pelvis, to the amazement of my oncologist.

Kind Regards

Thinus Coetzee

in reply toThinus

Thanks

scarlino profile image
scarlino

There is so much good knowledge and experience here. You are not alone. No one ever died from a PSA number or Gleason score. Get educated about options and go for the treatment that gives YOU the quality of life you desire. New treatments and new therapies are nearly regularly being put out there. There is much to take advantage of. Be blessed and don’t waste too much time on the pity party.

Brother,I got my news 3yrs ago.I stared off with kidney failure due to pc tumors blocking my urethra..Stage4,gleason 4+5 50 months to live with Adt & chemo..Did Adt & RT instead. Good results for 2yrs >0.04 no visible signs. If I can do that. So can you. You are going to suffer and you will need to fight hard. That said , you can live a long happy life. Be it hormonally altered,but you’ll be capable of good things and enjoying life. You have many more fish to fry friend.accept your path and treatments and kick this thing into the next century. Good luck!

The force is with you Obie1J...You will prevail....

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