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am I normal???

JMichael953
Posts: 2
Joined: May 2013

Hi folks,

I just joined this site and have a few questions.  After being diagnosed with prostate cancer last October I had the whole thing removed in January.  Since then I have changed some of my priorities and have moved retirement up from 2019 to 2015.  I don't get upset with other drivers anymore, either. :)

My first follow-up after surgery was positive with a psa of '0'.  Another follow-up is scheduled in 3 weeks.  I consider myself very fortunate and am looking forward to whatever lies ahead.  My concern has to do with constant daily thoughts being a survivor.  I think about cancer, trearment, lifestyle changes, etc. all the time.  I just want to know if others are, also, consumed by these thoughts.

I am 59 years old and am amazed at how many other people I have met who are in the 'cancer club'.

Thanks,

John

 

yankeefan
Posts: 69
Joined: Mar 2013

I'm sure you're as normal as the next guy. I don't find myself thinking about being a cancer survivor as much as the relatively immediate impact of the surgery (I'll be 7 weeks out tomorrow).....i.e. slight leaking every now and then and ED. If it weren't for those things, I'm not sure I'd think that much about it. I know i'm still at risk for further pc, even though with my excellent path report (all the cancer was found to be organ confined) I understand there is still some risk of getting the disease again. Maybe I'm just hoping that never happens and am dismissing it from my mind. I also consider myself a fortunate member of this club in that it appears every thing went well, I'm cancer free as far as one can tell, and while I leak a drop or two occasionally, it appears i dodged the incontinence bullet (that was the thing that most worried me pre-surgery). It would be great to get the ability to have an erection back....but only time will tell there. I didn't have any problem pre-surgery, so I'm hopeful I'll get some ability in that domain back eventually. You're right though...this club is too big...I sure didn't want to join it...I hope that researchers can continue to find improvements so that future generations either don't have to deal with this at all, or have a much easier time of it.....

btw, I had been suffering with bph for years before I found out I had prostate cancer. one benefit to the surgery is that my urinary control is much improved from what I had before. before surgery, I always had to be able to find a bathroom at least every hour, some times considerably less, depending on how much I'd had to drink. that really impacts your quality of life. now I'm much more "normal" in that regard...I can easilty go 2-3 three hours (assuming I haven't just consumed 2-3 cups of coffee) and the urgency is nowhere near as strong. In this regard the surgery has actually been a big improvement.

best of luck in your retirement...it's great....you're gonna anjoy it.....

JMichael953
Posts: 2
Joined: May 2013

Thanks.   appreciate it.

greg from pa
Posts: 86
Joined: Jun 2010

Hi John, I just wanted to wish you best of luck. I am a head and neck cancer survivor from 2010. things were going great until a routine physical in late febuary reveled a psa of 42,and a subsequent cancer diagnosis in april. I will undergo a radical prostatectomy on june 18. I too am consumed with alot of uncertainity about the next battle with the beast. in the past i always tried to eat right, always exersized,and did not smoke.i never thought I would wind up with cancer the first time....let alone a second. I have spent the last couple of months mourning the impending loss of my sex life......now it seems the more I find out about this disease , that is just the tip of the iceberg. there will come a time when I will fully accept this cup which has been handed to me. In the mean time it is one day at a time or ocassionally one moment at a time. I want to thank all the men here for sharing their experiences here. It helps to hear truth not just bullshit from someone who thinks they are being kind by sugar coating it. damn the torpedoes...full speed ahead..... regards Greg

blues
Posts: 2
Joined: Jun 2013

Hi everyone, I have been stressing about which treatment I should have. Ihave a 12 PSA and a 3+4=7 Gleason score. I met with a seed doctor and he recommended hormone, seed procedure, and follow up with external radiation. My Urologist wants to do the Devinci surgery. Any feed back regarding these would be helpful. For those who had surgery, what steps were taken? Thanks everyone...   

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

Blues,

It should not be a surprise that a brachytherapy specialist recommends seeds and that your urologist (a surgeon) recommends surgery.  I would hazard a wild guess that if you visited another radiation oncologist that you would get a recommendation that featured their particular specialty and there are lots of different types of radiation.  To me one of the most frustrating aspectsof dealing with this disease is that highly qualified, renowned experts in their field confidently recommend radically different approaches to treating the same disease.  It is left to the layman to figure out what is best for him and too often we end up going with the doctor we seem to like the most or worse yet, only follow the recommendations of a single physician.  

The only way out of this is to educate yourself and try to take the emotion out of your decision. I urge you to visit still more specialists, perhaps one who specializes in SBRT and one who does IMRT and proton therapy to get their takes.  In my own situation I visited with several (six) specialists before deciding on a treatment.  Some may recommend consulting with an oncologist that specializes in prostate cancer believing that oncologists are somehow unbiased and will give a better recommendation.  My own feelings on this is that by definition, oncologists treat cancer with chemicals (chemo and hormone therapy) and are not unbiased at all although I am sure it varies from doctor to doctor.  

I recommend that you begin reading extensively in between consulting visits.  You can go to Amazon and download or buy hard copy a host of excellent books about prostate cancer.  Tbis forum, if you read back through a couple of hundred posts or so, is also an excellent way to gather information from men who have actually experienced what you are going through.  Just keep in mind that these are lay opinions and not medical advice and that many men, even after treatment, have only a dim understanding of the nature and course of prostate cancer.

I am sure many posters will offer their best advice but you need to give us more information such as your age, your PSA history, DRE status, family history of prostate cancer, other health issues, and so forth.  Do you have any other symptoms such as difficulty urinating or pain in the abdomen?  Have you been diagnosed with any other ailments that could affect which treatment is best for you?

Keep in mind that every treatment carries some risk of adverse side effects.  Some side effects can be much more adverse than others and run the gamut from incontinence, erectile dysfunction, penile atrophy, hot flahes, weight gain, and even death.  Doctors tend to gloss over side effects so make sure you grill them about it.  Read some of the posts about how different men are dealing with side effects and how it affect their quality of life.  At the end of the day, only you can determine what priorities are important to you.  To me, quality of life was significantly more important than quantity of life.  We're all going to die sooner or later and while we all hope that is later, some may prefer to go out with a high quality rather than cling to a physically debilitating life style.

A Gleason 7 such as you have (a 3+4) is at the lower end of the "intermediate" threat scale.  That means you have a lot of viable options available to you that you should discuss with various specialists.  Many posters seem to have gum on their shoes with respect to putting all thier faith in studies and there have been many debates on aspects of various studies.  While I think studies are important, many physicians are using techniques and processes that aren't in a study and are working fine.  For example, most studies using SBRT want a cohort of men with Gleason 6 scores, but in fact radiologists all over the country are routinely treating Gleason 7 and higher scores successfully with SBRT techniques.  So I recommend paying attention to studies but also ask the doctors what they're doing in their actual practice and how that is working.

Insurance coverage is another aspect that most men have to deal with when deciding upon a treatment.  Not all health care plans cover all treatments.  Some health care providers, such as Kaiser and other HMOs actually have very limited choices.

I ended up making a matrix that compared effectiveness, cost, convenience, and side effects and racked and stacked the options to figure out what was really best for me.  And keep in mind that every cancer is different.  No 3+7 is the same and what may be good for one may not be the best choice for you.

Good luck and keep us posted on your progress.

 

Best,

 

K

blues
Posts: 2
Joined: Jun 2013

Hi everyone, I have been stressing about which treatment I should have. Ihave a 12 PSA and a 3+4=7 Gleason score. I met with a seed doctor and he recommended hormone, seed procedure, and follow up with external radiation. My Urologist wants to do the Devinci surgery. Any feed back regarding these would be helpful. For those who had surgery, what steps were taken? Thanks everyone...   

yankeefan
Posts: 69
Joined: Mar 2013

you have been given good advice re getting as many "2nd opionions" you can...with a variety of treatment specialties.....If your dre is negative and you have been getting routine psa tests, i.e. there's no reason to believe the cancer is outside of your prostate because, for example, it has been undetected for a long time, then I would either start with other forms of radiation or surgery, but not seeds. Perhaps there is something we don't know about your condition that would lead to a recommendation to go with seeds first, but lacking that, I wouldn't start with them.....and while I have no first hand knowledge, I will offer that my urologist was not very sanguine about the "cyber knife." He thought it was being over sold and that if you should choose radiation to have the multi week variety as opposed to the cyber knife...(all due respects to georgetown university hospital, who champions the cyber knife in the DC area.....)

but bottom line...get all the info you can...by doctors that are well respected and have years of experience, and then make your decision...

all these treatments have potentially "bad" side effects...some show up earlier with one kind of treatment, some show up later with an other kind....

one possible way to mitigate them, especially with surgery, is to get the best surgeon you can....while that won't guarantee you won't be incontinent, for example, is it highly unlikely (statistically) that you will be....If you are considering robotic surgery you definitely want a surgeon who has done hundreds if not thousands of them.....an unskilled surgeon trying to do a robotic surgery can really f#@$ you up, but then that is true for the "old fashioned" version too...you want a highly capable surgeon if you should choose that option..... 

with surgery it is virtually a given that you will be impotent for awhile...though if you have good abilities now the likelihood that you will regain them goes up....it also depends on whether you are a candidate for nerve sparing surgery...though being a candidate for nerve sparing surgery by no means guarantees that your nerves will be spared...just that they will will try to spare them...every surgeon i spoke to was clear that their primary objective was going to be getting rid of the cancer, not to keep my erections.

my sense is that as far as getting the cancer is concerned, assuming it is contained within the prostate, radiation or surgery will both do the job equally well....that leaves you with sorting out the possible side effects and making your choice....

good luck no matter what your choice....and all the best on your recovery.

 

 

 

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

In Sunday's newspaper magazine there is an article by Dr. Ranit Mishori "Breakthrough News In Prostate Cancer"
I was quite surprised at some comments in the article. . . "Many men are better not taking a PSA test". or
"But there's another way to look at the numbers. While a man has a 17% chance of getting the disease in his lifetime, he has onlya 3% chance of dying from it, according to the journal, American Family Physician". . .
My conclusion: I am part of the 17% and the debate continues!

P.S. I had radical prostatectomy (DaVinci Method) in 2009 at John Hopkins. Would I do it again? Absolutely not.

shubbysr (jim)

Samsungtech1
Posts: 350
Joined: Jan 2011

John,

I would venture to guess that everyone on this site believes that they do not fall into the 50 percent range. As far as thoughts go I would say you are no different than the rest of us.  When they tell you "cancer" your mind goes through alot.  When it finally starts to sink in, after the dr. Visits, ct scans pet scans etc. you begin to realize that this vessel that never gave you a problem has just betrayed you in the worst way, kind of like when the love of your life ran off with the quarterback, so now you know you are mortal. Now all theproblems this will cause start rushing in. If you are married then family, insurance, pension etc.  regardless everyone has someone to worry about.  Worry about the treatments?  My advice is once you decide on a plan do not go digging for what is going to happen because none of us are exactly alike and we will not have the same side effects, or results. Be confident in your decision, from research. And then you are in the game and it will tell you what is coming next.

Mi,e

NoTimeForCancer
Posts: 394
Joined: Mar 2013

John,

While I am too young to retire, I would say I have very similar thoughts go through my mind.  When I get really busy and am LIVING, cancer is the furthest thing from my mind.  I do realize the saying, "Don't sweat the petty stuff and don't pet the sweaty stuff" is about right. 

I do find my mind drifting back to what I have been through.  The cancer "down there", endometrial, is not something someone wants to talk about but it is what I had.  I think about my cancer and the future and I have to stop myself because I don't think it is a good place for me to go.

Everytime I turn around it seems I am hearing someone has cancer and it is just crazy.  I hope I can help the way people helped me.  By listening and answering questions they have, and directing them here if need be.  However, I can't see myself staying here for long.  I have to be MORE than this cancer.  I can't let it define me. 

You probably know what I mean but I do think this has changed me.  The world is very different.  I thought I could understand it before, but I see now I didn't.

Again, I hope you don't mind a woman crashed your board.  Cancer is cancer.  It sucks and we both have the t-shirt.

 

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