Re: Battling Prostate Cancer- and being Discouraged

[Guest guest]

Hi Lovemyspyder,,,you didn't sign your e-mail so I don't know what to call you,,my husband also has prostate cancer. He was 64 years old when we found out about it. I was emotional also...it's a couple's disease..it effects your sex life also. I'd say do your homework and learn about all the different types of treatments,,weigh the pro's and con's of the side effects too. Also I'd say remember doctors who specialize in a certain fields as a surgeon would say the only way to go is surgery,,a radiation oncologist will say the same about radiation and so on. The doctor's work for you. Ask as many questions as you'd like here,,no question is to small or silly. You are so young,,my heart goes out to you. My husband first wanted surgery,,he wanted the cancer taken out of his body. But then he learned about all the side effects and we started learning about all the different types and it was so confusing,,,but don't be rushed into anythiing,,take your time and do your homework,, I'll keep you in my thoughts and prayers.

Best Wishes,

Sheila

To: ProstateCancerSupport Sent: Saturday, November 19, 2011 3:17:14 PMSubject: Battling Prostate Cancer- and being Discouraged

Hi- I am new to the group and would like to share my husband's new battle and seek advice and tips from those going through the same thing- My husband is 59 and was diagnoised with Prostate Cancer in late Oct- his Gleason score was a 6 with the smaller number first- out of the samples from the biopsy- one was 80% and one was 100% cancer- the location is at the top where it can easily spread- his PSA was 4.2 at its highest- After the long consultation with the DR about the options- seeds radiation, reg radiation, surgery, or do nothing- do nothign was not an option and surgery seems like this best route- but the more I read on forums and the internet the more discouraged I become at what happens after surgery- the dr basically said the urine issues typically heal up after 3 to 6 months and you are out of pads- and as far as the sexual side effects- he said he could spare the nerves on one side but couldn't promise about the other? His dad had radiation on his prostate and is now in his 80's no problems in the future- My husband also has atrial fibriration( AFIB- I can never get the spelling right on that one)He manages it by taking a betablocker Metopolol daily- I am 33 and we have two daughters 7 and 9- We don't have the slightest idea how to tell them anything other than just a surgery- I know for a fact I am heavy hearted and emotional from day one- The urologist= and the family doctor were encouraging to some degree but then again thats part of their job-I hope to learn alot on in this group and here how you found strength during these times-

[Guest guest]

LMS --

Chuck's advice is always worthwhile. We're here to listen and (hopefully) help.

This is going to be a tough time for both of you. You're younger than most

" prostate cancer wives " , and most " prostate cancer children " are older than

yours. Take your time deciding on a treatment; you'll be living with the

side-effects for a long time. And you're young and healthy enough to be

concerned about _really_ long-term survival rates.

You might find a local cancer support group, or cancer counselling person, and

ask:

.. . . What should we tell the kids? How should we tell the kids?

You're not the first parents to be in this situation. The kids are probably old

enough to sense that _something_ is wrong. They may be relieved to know what it

is, and that it's treatable, and that most people who have it, don't die of it.

Visit the USTOO website ( www.ustoo.org ) and find a local PCa support group.

Those meetings were very good for me (and my wife) when I was diagnosed.

The biopsy results suggests a large cancer; the PSA result suggests a small one.

I wonder what's happening . . . A radiation oncologist might have the answer.

Your doctor deserves praise for suggesting non-surgical options, and for warning

you that there probably _will_ be urinary and sexual (erectile function)

problems.

Prostate cancer is a couples' disease. All treatments may affect erectile

function, and hormone-blocking treatment will affect libido (which is _not_ the

same thing) as well. You can work around erectile problems -- see Mulhall and

Alterowitz, below.

There's a lot of depth in this group; ask whatever questions you have.

Sometimes there are no clear answers -- my joke about choosing a treatment is:

.. . . There's a high minimum bet,

.. . . you don't really know the odds,

.. . . . . but you can't refuse to play.

My heart is with you --

Three books that might be useful (and links to Amazon.com):

.. . . " A Primer on Prostate Cancer: An Empowered Patient's Guide " --

.. . . Strum & Pogliano (7 years old, but still very good):

http://tinyurl.com/d59p7s9

.. . . " Saving Your Sex Life: A Guide to Men with Prostate Cancer " --

.. . . Dr. Mulhall

http://tinyurl.com/d33oj9p

.. . . " Intimacy with Impotence: The Couples Guide to Better Sex

.. . . After Prostate Disease " -- Ralph and Barbara Alterowitz

http://tinyurl.com/7jsuvdw

USTOO has a huge information packet, and the material on their website is

excellent. Also try the Memorial / Sloan Kettering website:

http://www.mskcc.org/cancer-care/adult/prostate

>

> Hi- I am new to the group and would like to share my husband's new battle and

seek advice and tips from those going through the same thing- My husband is 59

and was diagnoised with Prostate Cancer in late Oct- his Gleason score was a 6

with the smaller number first- out of the samples from the biopsy- one was 80%

and one was 100% cancer- the location is at the top where it can easily spread-

his PSA was 4.2 at its highest- After the long consultation with the DR about

the options- seeds radiation, reg radiation, surgery, or do nothing- do nothign

was not an option and surgery seems like this best route- but the more I read on

forums and the internet the more discouraged I become at what happens after

surgery- the dr basically said the urine issues typically heal up after 3 to 6

months and you are out of pads- and as far as the sexual side effects- he said

he could spare the nerves on one side but couldn't promise about the other? His

dad had radiation on his prostate and is now in his 80's no problems in the

future- My husband also has atrial fibriration( AFIB- I can never get the

spelling right on that one)He manages it by taking a betablocker Metopolol

daily- I am 33 and we have two daughters 7 and 9- We don't have the slightest

idea how to tell them anything other than just a surgery- I know for a fact I am

heavy hearted and emotional from day one- The urologist= and the family doctor

were encouraging to some degree but then again thats part of their job-I hope to

learn alot on in this group and here how you found strength during these times-

>

[Guest guest]

> Hi- I am new to the group and would

> like to share my husband's new battle and seek advice and

> tips from those going through the same thing ...

I'm sorry to hear of your husband's diagnosis.

The main advice that I would like to add to what you've already

heard is to find the very best doctor that you can for your

husband's treatment.

There are specialist surgeons who perform 200 radical

prostatectomies a year. Then there are local urologists who

treat every kind of urological disorder in both men and women and

who may do as few as five or six radical prostatectomies each

year.

You really want the experienced specialist, not the generalist

who may do everything reasonably well but hasn't seen 1,000

prostates, hasn't treated fat men, thin men, men with small

prostates, men with large ones, men with cancer extending to the

lymph nodes, men with cancer in the seminal vesicles, and on and

on.

Radiation is similar. There are some radiation oncologists who

treat everything from bladders, to breasts, to prostates, to

thyroids, to kidneys, and then there are others who really

specialize in prostate radiation and have learned all of the ins

and outs of treating different men with different conditions.

You only get one chance at each treatment and you want it to be

done by the best practioner you can get.

This is not a reflection on your husband's current doctor. He

may be an excellent urologist. But unless he really specializes

in prostate surgery, he may not be the ideal person to go to.

I once had a dentist who offered to do a root canal for me, I

declined and went to an endodontist instead. He was one I had

seen before. He did nothing but root canals, about eight of them

each day. He had literally done thousands of them. He was fast,

painless, and knew exactly what he was doing. He looked at my

tooth x-ray and said, " Well, that's a little unusual " , pointing

out a funny bend in one of the roots. I asked if it was a

problem and he said, " No, I've done quite a number like that, you

just have to do this and that and this other thing. " Much as I

liked him, I was glad it wasn't my dentist facing the problem.

Here is a list of research hospitals designated by the National

Cancer Institute as offering advanced care:

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list2.html

Best of luck.

Alan

[Guest guest]

To "LMS"

The others responding to your note are right that you should not keep your children in the dark. Kids generally are more aware of things than you might think. They are an integral part of your family unit and deserve to be included. You don't have to go into great detail, but if they ask questions you should answer them at the level they will understand. They will let you know somehow when they are satisfied.

I was diagnosed seven years ago - at age 75 - with very aggressive PCa which fortunately was caught early with no apparent spread. I had external radiation plus hormonal therapy and to date there is no sign of its return.

Part of my personal strength came from the knowledge of my beloved wife's unconditional love and that of my family too. Formal religious beliefs, of course, are a source of courage for many people. I am not formally observant myself, but have a very positive inner faith that I can cope with practically anything that's thrown at me. (I even survived a second cancer, non-Hodgkins lymphoma, last year.)

Avoid any feelings of discouragement or despair. Someone is watching over you. Make the best possible decision you can, then move forward and DON'T LOOK BACK.

I will keep healing thoughts in my heart for you both.

Manny R.

Subject: Battling Prostate Cancer- and being DiscouragedTo: ProstateCancerSupport Date: Saturday, November 19, 2011, 6:17 PM

Hi- I am new to the group and would like to share my husband's new battle and seek advice and tips from those going through the same thing- My husband is 59 and was diagnoised with Prostate Cancer in late Oct- his Gleason score was a 6 with the smaller number first- out of the samples from the biopsy- one was 80% and one was 100% cancer- the location is at the top where it can easily spread- his PSA was 4.2 at its highest- After the long consultation with the DR about the options- seeds radiation, reg radiation, surgery, or do nothing- do nothign was not an option and surgery seems like this best route- but the more I read on forums and the internet the more discouraged I become at what happens after surgery- the dr basically said the urine issues typically heal up after 3 to 6 months and you are out of pads- and as far as the sexual side effects- he said he could spare the nerves on one side but couldn't promise about the other? His dad had

radiation on his prostate and is now in his 80's no problems in the future- My husband also has atrial fibriration( AFIB- I can never get the spelling right on that one)He manages it by taking a betablocker Metopolol daily- I am 33 and we have two daughters 7 and 9- We don't have the slightest idea how to tell them anything other than just a surgery- I know for a fact I am heavy hearted and emotional from day one- The urologist= and the family doctor were encouraging to some degree but then again thats part of their job-I hope to learn alot on in this group and here how you found strength during these times-