I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: Ken Shelmerdine on December 13, 2007, 05:57:45 AM

Title: Good News and Bad News
Post by: Ken Shelmerdine on December 13, 2007, 05:57:45 AM
Well I'm really pissed off. :rant; I've been having various tests on the transplant build up programme and after a blood test to check any prostate gland problems they did a biopsy (not pleasant). The upshot of it is that the biopsy showed that I have the early stages of prostate cancer.

 I found this out  only yesterday so as you can imagine I'm pretty down in the dumps about it. The good news is that the prognosis is very good. The consultant said that it is the least aggressive form and would not get to an advanced stage for 12 to 15 years. I should be cheered by that I know but it's just that C word, and knowing I have it has really knocked me for six.

He says there are three options. 1. to undertake 'watchful waiting' where I will have check-ups every three months until the PSA levels indicate some form of treatment is essential which could be years: 2. Surgery to completely remove the prostate: and 3. Radiotherapy.

I think my choice is going to be radiotherapy but I'm worried sick at the thought that the radiotherapy could also damage my peritoneal lining and therefor stop PD from working efficiently so that I would have to do Haemo. The urology consultant couldn't give me an answer to that as he has no experience of dialysis related matters. I will be attending the renal clinic this Monday 17th Dec so I'll ask the question.

If anybody knows the answer right now please post, I'm going to be so stressed out about it over the week-end.
Title: Re: Good News and Bad News
Post by: Joe Paul on December 13, 2007, 06:01:39 AM
That sucks Ken, I have no answers for you, but will keep you in thought and prayer
Title: Re: Good News and Bad News
Post by: 2_DallasCowboys on December 13, 2007, 06:10:13 AM
So sorry toread this!!!
Will be praying for ya. :angel;

Anne
Title: Re: Good News and Bad News
Post by: KR Cincy on December 13, 2007, 06:25:06 AM
You're right Ken...hearing the C word just takes your breath away. It triggers every frightening thought you've ever had to come to the surface...but as I've learned, you can fight it. You're doing the right thing by gathering as much information as you can before making a decision on your course of treatment. It's scary, complicated, and depressing...but keep the faith and know we're all here if you need us.
Title: Re: Good News and Bad News
Post by: bolta72 on December 13, 2007, 07:00:36 AM
so sorry to hear about this, has the cancer spread outside the prostate ? If not taking it out may be a good option. My father had his out at 87 with no problems.
Title: Re: Good News and Bad News
Post by: bolta72 on December 13, 2007, 07:02:49 AM
I meant to say having it taken out.
Title: Re: Good News and Bad News
Post by: paris on December 13, 2007, 07:09:17 AM
Oh Ken, I am so sorry. It doesn't seem fair that you have to deal with this also. This just seems like a cruel joke.  Do whatever  is the most effective method to get rid of this. I am glad it is the least agressive type, but I want this "C" thing gone from your body.  You know you are special to me and I don't want you to have to go through this.  Sending lots of good wishes and positive thoughts your way!! :cuddle;
Title: Re: Good News and Bad News
Post by: stauffenberg on December 13, 2007, 07:23:16 AM
Since on the one hand prostate cancer can often remained self-contained and never cause you any problems for decades, perhaps not even before the end of your natural lifespan, while on the other hand any treatment of prostate cancer can have all sorts of negative side-effects from urinary incontinence to sexual impotence, for most patients with minimal, early-stage prostate cancer it is better just to monitor the condition to make sure it doesn't get worse, but otherwise to leave it alone.

In your case, however, since you are contemplating a kidney transplant with its intensive suppression of the immune system, would might regard taking a passive approach to the prostate cancer as too risky.  For patients with developed prostate cancer, the waiting time after the cancer is cured before a transplant can be performed is 2 years.  For patients with purely localized disease, there is no waiting time for a transplant.  So it is all a judgment call. 

There are also things you can take to influence the course of prostate disease positively, such as saw palmetto and pumpkin seeds (but in moderation on dialysis, because of their potassium content).  Whether there is any contraindication to taking saw palmetto because of its potential interference with immunosuppressive medication, I don't know.  However, as a transplant recipient, I eat fresh pumpkin seeds every day as an insurance against developing prostate disease and there is no interference with my medications from that.
Title: Re: Good News and Bad News
Post by: xtrememoosetrax on December 13, 2007, 07:38:42 AM
Hi Ken,

So sorry to hear this.  As if you needed something else to deal with on top of PD . . . .

I work at a university-affiliated cancer treatment center, but I am NOT a doctor or nurse.  I do medical transcription, which means that the little I know about this stuff has been picked up -- NOT from doing it or going to school for it -- but from typing about it!  Okay, with that disclaimer out of the way, here is what I think:  My recommendation would be that you talk to a radiation oncologist, a doctor who actually specializes in radiation therapy. You MAY have more than one option for radiation therapy.  Here, one option for prostate cancer patients is a treatment called radioactive seed implantation, which involves, I think, quite low levels of radiation and very localized treatment.  I also know that with conventional external beam radiation they certainly TRY to very closely target the tumor itself without damaging surrounding structures.  How well this works in practice I cannot say.  There is also a newer twist on this called intensity-modulated radiation therapy which is supposed to be even better at delivering the "right" amount of radiation to the "right" place.  Of course, I don't know if these treatments are available to you or if they would be appropriate for you.  What I CAN say is that, judging from the doctors I work with, I think that they would take very seriously your concern about the risk of damage to your peritoneum and would be more than willing to help you weigh the potential risks and benefits.  (Unfortunately, of course, they probably don't know sh*t about PD  . . .  sigh . . . the joys of the highly specialized medical world . . . .  :(.  Still, though, worth a try, I think.)

One more thing: It is my impression that any kind of radiation therapy generally involves fewer risks of urinary incontinence, impotence, etc., than does surgery.  Again, though, talk to your doctors or other professionals about this.

Best of luck with sorting all this out, and please keep us posted.  We'll be thinking about you.
Title: Re: Good News and Bad News
Post by: livecam on December 13, 2007, 07:42:57 AM
I have a friend, actually a coworker who is retired now who was diagnosed some years ago and decided on the surgical option.  The surgery was successful, his recovery uneventful, and he went on to return to work until retirement.  He leads an active life and has had absolutely no further problems with this issue.
Title: Re: Good News and Bad News
Post by: Deanne on December 13, 2007, 08:48:22 AM
I'm sorry Ken! My dad and brother were both diagnosed with prostate cancer. My dad's was detected early and he chose to be "seeded." I think it was a relatively simple process, affected no other organs, and he continued his normal life. Just hearing the "C" word is enough to scare the bejesus out of me!
Title: Re: Good News and Bad News
Post by: okarol on December 13, 2007, 09:05:25 AM
 :grouphug; I hope you find the best solution for you Ken.
Title: Re: Good News and Bad News
Post by: thegrammalady on December 13, 2007, 09:09:48 AM
the pollyana in me (my mother's fault) says prostate cancer caught early is curable. that said and out of the way, i'm sitting here crying because i feel so bad for you. anytime the doctor says cancer or precancerous, it hits hard. been there done that, never want to go there again. hoping the best for you, whatever you decide to do.
Title: Re: Good News and Bad News
Post by: Ken Shelmerdine on December 13, 2007, 11:58:20 AM
Just want to say thank you for all your kind thoughts, encouragement and some very useful information.I think I'm getting into a more positive frame of mind. They said it can be completely romoved by radiotherapy and if the answer to my question this coming Monday is no it won't damage the peritonium and yes you will still be able to do PD then I'll be a lot happier. Whatever happens I'm going to fight this!   :boxing; :boxing; :boxing; :boxing; :boxing;

Thanks again you are all such wonderful caring people.
Title: Re: Good News and Bad News
Post by: Romona on December 13, 2007, 07:30:09 PM
Ken, I don't know what to say.  :'(
Title: Re: Good News and Bad News
Post by: angela515 on December 13, 2007, 07:40:19 PM
Well, obviously I have never had prostate cancer as i'm a girl... but I have had a form of cancer, so I have had the "C" word come up... just this year in fact, after my transplant. Mine was in my thyroid... and they removed the thyroid with it on it while they were doing my parathyroidectomy. I then had a biospy on my other thyroid and was told that spot is also cancer, but so small, they would 1) never even found out about it in my lifetime if they weren't already in there digging around for my para's to take out and 2) it is so small it will probably never ever be brought up again during my life. I still will have a check-up in a year (which is coming up the begining of next year) to do blood work, to just ease my mind that all is still nothing to worry about.

Like you, first hearing the "C'" word is devistating. Actually my mom took it harder than me and soon as she heard it she started crying right there. My first thought was oh great, I got this transplant for nothing.

I hope you take a deep breath, and talk with the doctors for the best plan for you.  :grouphug; :cuddle;
Title: Re: Good News and Bad News
Post by: Sluff on December 13, 2007, 08:01:20 PM
You can beat this Ken. I know you can. I mistakenly was diagnosed with adrenal gland cancer. Who heard of such a thing but after extreme testing they gave me a clean bill of health. I know what it's like to recieve that kind of news. My support and prayers are with you all the way. :grouphug;
Title: Re: Good News and Bad News
Post by: kitkatz on December 13, 2007, 08:47:51 PM
Hey Ken. I know nothing about this kind of thing, but I send my support and prayers your way.
Title: Re: Good News and Bad News
Post by: Wattle on December 13, 2007, 11:39:28 PM

Sending support and a BIG {{{HUG}}} for you.   :cuddle;

Title: Re: Good News and Bad News
Post by: KICKSTART on December 14, 2007, 05:29:56 AM
Oh Ken , what bad news. I hope it all goes ok for you and you get all the info you need to decide what to do  :cuddle;
Title: Re: Good News and Bad News
Post by: Black on December 14, 2007, 07:34:09 AM
Well, crap!  >:(  What else could they throw at you!?!  At least it is a type that gives you some time to learn and weigh all of the alternatives, and it was caught very early.  :2thumbsup;  Besides, better to catch it now than after you have transplant and are on drugs which could make it grow faster.  Hope all goes well.  :grouphug;
Title: Re: Good News and Bad News
Post by: paddbear0000 on December 14, 2007, 09:12:26 AM
Ken, I'm so sorry about this! You are in my thoughts and prayers. I'm glad you have such a positive outlook though. You are one of the people I look to when I am feeling unsure about things. You always seem like a rock!  :cuddle; :cuddle; :cuddle;
Title: Re: Good News and Bad News
Post by: rose1999 on December 14, 2007, 09:22:52 AM
Hi Ken, so sorry to hear this.  My husband had (very advanced) prostate cancer and I'd say if you are offered an op then seriously consider having it.  His was found too late as it had already spread to the bone (yet he was only 46 and symptomless at the time) and (after hormone treatment) he had radiotherapy,but they can only give you so much before it affects the bowel.  It also leaves the skin tender (as if you've had sunburn) and he had to be very careful what he did, e.g. could not have the shower too hot or it hurt, had to use Simple soap etc.  So, in my view (and that's all it is) then getting rid of it, if it has not spread outside the prostate has to be a good thing.  Barry did have hormone treatment initially and that worked well for 2 or 3 years, has your consultant discussed that?  I'd also suggest you look up the Prostate Cancer Charity web site www.prostate-cancer.org.uk. as they have a lot of useful information and their nurses are very supportive.

Good luck Ken, I'll have you in my thoughts.  :cuddle;
Rose xx
Title: Re: Good News and Bad News
Post by: goofynina on December 14, 2007, 03:09:46 PM
 :bow; How dareth they tell sir Kenneth Shelmerdinizzle such news,  :P OFF WITH THEIR HEADS!!!   :o   You know your in my prayers and in all of my goodest thoughts my friend, think positive and remember, we love ya and we care  :grouphug;
Title: Re: Good News and Bad News
Post by: Bajanne on December 14, 2007, 10:18:08 PM
My caring thoughts and prayers are with you all the way.  Today is 14 years since I had a mastectomy due to breast cancer. We are survivors, aren't we!
Title: Re: Good News and Bad News
Post by: Ken Shelmerdine on December 15, 2007, 08:02:56 AM
:bow; How dareth they tell sir Kenneth Shelmerdinizzle such news,  :P OFF WITH THEIR HEADS!!!   :o   You know your in my prayers and in all of my goodest thoughts my friend, think positive and remember, we love ya and we care  :grouphug;
:rofl; :rofl; :rofl; That brought a smile to my face Susie. Thank you again for all  the kind thoughts from all who have posted to this thread. It gives me courage to know so many people are rooting for me. I have my family and friends and my special IHD family. What more could a man want?
Title: Re: Good News and Bad News
Post by: BobT1939 on December 15, 2007, 08:52:15 AM
One of the things about prostate cancer that makes it so difficult is the lack of medical consensus in regard to what to do about it. With other cancers the treatments are relatively straightforward: cut it out, radiate it, or administer chemotherapy. With prostate cancer all of those modalities have advocates, as does "watchful waiting", and radio-active seed therapy. A great deal is left up to the patient re what path will be followed, so researching alternatives is important.

I had a prostatectomy based on the aggressive nature of my disease, my age, and general condition. This was before my ESRD had set in. Prior to that, I had had three major surgeries for disseminated testicular cancer. My urologist advised me that all of the surgical adhesions that had resulted ruled me out as a candidate for PD.

As always, find a doctor, in this case a board certified urologist, in whom you have confidence. Get a second opinion. I hope you are in a teaching hospital environment where you can get cross-disciplinary advice.
Title: Re: Good News and Bad News
Post by: MyssAnne on December 15, 2007, 09:02:05 AM
Ken, all I can say is I'm sorry this happened, but it iS better now than after a transplant.  I know, inadequate. Hang in there, and let us know how you're doing.  :grouphug;
Title: Re: Good News and Bad News
Post by: goofynina on December 15, 2007, 04:00:21 PM
:bow; How dareth they tell sir Kenneth Shelmerdinizzle such news,  :P OFF WITH THEIR HEADS!!!   :o   You know your in my prayers and in all of my goodest thoughts my friend, think positive and remember, we love ya and we care  :grouphug;
:rofl; :rofl; :rofl; That brought a smile to my face Susie. Thank you again for all  the kind thoughts from all who have posted to this thread. It gives me courage to know so many people are rooting for me. I have my family and friends and my special IHD family. What more could a man want?

 :secret;  They want a chance to wear a tiara and look purty like our very own Sluffypoo  ;D

Title: Re: Good News and Bad News
Post by: Romona on December 15, 2007, 04:39:54 PM
Nothing can make a girl warmer on a cold winter night than a man in tiara.  :rofl;
Title: Re: Good News and Bad News
Post by: Ken Shelmerdine on January 10, 2008, 03:23:10 AM
 :2thumbsup; Well it's good news. I went to my first appointment at the Christie Cancer Hospital yesterday. It's been decided that a treatment called brackytherapy be carried out. They inject radioactive seeds into the prostrate. This does not damage surrounding tissue most importantly the peritoneum.  It's a one of procedure carried out under anaesthetic or epidural and causes the tumor to shrink to zero over a twelve month period.

There will be some after affects but these I am assured will be temporary. There's no overnight stay in hospital, they discharge you the same day but I musn't drive home because of the affect of the anaesthetic.

They said that because the tumor is only stage 2 it will be cured completely. To say I am relieved about this is an understatement. It's been hanging over me since just before Christmas and really put a downer on things including my 60th birthday celebrations.

I feel much better now and I'm back to my usual crazy self. :bandance; :bandance; :bandance; 


Edited:  Corrected icon error.   Bajanne, Moderator
Title: Re: Good News and Bad News
Post by: Joe Paul on January 10, 2008, 03:27:00 AM
Thats good news Ken, and just to let you know, a friend of mine had the same treatment 3 years ago and he is doing great. I hope the same for you, good luck  :thumbup;
Title: Re: Good News and Bad News
Post by: MyssAnne on January 10, 2008, 04:07:25 AM
Whew!! That is great news, Ken!!!

PLEASE, keep us posted!!!

I am so glad you were on of the fortunate ones, and, that it will not interfer with PD.

Title: Re: Good News and Bad News
Post by: Romona on January 10, 2008, 04:14:04 AM
 :yahoo; :thumbup;
I'm so happy for you!
Title: Re: Good News and Bad News
Post by: Sluff on January 10, 2008, 06:13:38 AM
WOW that is great news Sir Ken. :clap; Maybe we can get down to kingdom business again soon.  >:D
Title: Re: Good News and Bad News
Post by: xtrememoosetrax on January 10, 2008, 06:38:40 AM
Wonderful!  I was hoping that an option like this would be workable for you, so I'm very glad to hear the news! 

I know a man who had this treatment several years ago. The procedure really did seem pretty quick and painless, with little in the way of side effects, and he remains disease-free at this time. 
Title: Re: Good News and Bad News
Post by: willieandwinnie on January 10, 2008, 07:05:59 AM
That is good news Ken.  :yahoo;
Title: Re: Good News and Bad News
Post by: Ken Shelmerdine on January 10, 2008, 07:50:08 AM
WOW that is great news Sir Ken. :clap; Maybe we can get down to kingdom business again soon.  >:D

Yes Viscount lets make sure our ladies are not getting too big for their boots :rofl;
Title: Re: Good News and Bad News
Post by: Deanne on January 10, 2008, 08:34:53 AM
That's great news!  :bandance; My dad had that done a couple of years ago and seemed to take it in stride.
Title: Re: Good News and Bad News
Post by: Psim on January 10, 2008, 10:15:44 AM
Whew, good news at last!  :2thumbsup; I'm so glad they caught it early and a non-invasive cure is possible. Go Ken!!!!!!
Title: Re: Good News and Bad News
Post by: rose1999 on January 10, 2008, 10:41:41 AM
Ken this is fantastic news, I am so glad they have caught it in time.  My husband died from this disease at 52 as his was asymptomatic and the cancer was not detected until it had spread far into the bone and other organs.  The Christie hospital is fantastic, they tried so hard to help him.  I'm absolutely delighted that the outcome for you is so positive.  Lots of love
Rose  :yahoo;
Title: Re: Good News and Bad News
Post by: paris on January 10, 2008, 10:49:08 AM
With all the holiday treats, we Ladies of Ken's kingdom probably are getting too big for lots of things, including the boots! :rofl;

I am so pleased,Ken, with your news.  I just want you back to your normal happy self with no huge worry over your head.  You know we love you!!
Title: Re: Good News and Bad News
Post by: goofynina on January 10, 2008, 02:31:11 PM
Just wanted to add my praise to this great news  :clap;   :bow;
Title: Re: Good News and Bad News
Post by: angela515 on January 10, 2008, 02:39:16 PM
Great news! :)
Title: Re: Good News and Bad News
Post by: Wattle on January 10, 2008, 10:30:19 PM
 :clap;  Great news Ken    :cuddle;