Post-radiation pain

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lindhawk
New Member


Date Joined Jan 2007
Total Posts : 6
   Posted 1/10/2007 1:21 PM (GMT -7)   
I have just found this site and am hoping someone out there may be able to help.  My husband had 39 radiation treatments in 2001 for prostate cancer.  A few months after he finished treatment, he began to experience pain in the area of the prostate and more recently also in the rectum.  He has been told that this is caused by the radiation.  His quality of life - he can't sleep at night because of the pain - is such that he has suggested we separate as I am 9 years younger than him and my quality of life is suffering as well.
 
Has anyone experienced this effect after radiation treatment for prostate cancer and if so have you found anything that will alleviate it? 
 
We're at the end of our rope and he doesn't want to live with this for the rest of his life.  He is 71 years old.
 
To those of you about to undergo radiation treamtment for this disease, I'm sorry if this post sounds alarming but we think that this is an unusual side-effect and we're only hoping that someone else may have experienced it too (although would not wish it on our worst enemy) and have found a remedy.
 
Thank you.

Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 1/10/2007 3:58 PM (GMT -7)   
Have you talked to his original, or another, radiation oncologist? Many things have changed/improved/been developed since 2001.

I'd hate to think you would separate because of this and leave him to fight alone.

-Gordy

lindhawk
New Member


Date Joined Jan 2007
Total Posts : 6
   Posted 1/10/2007 4:41 PM (GMT -7)   
Thanks for your reply, Gordy.  Yes, we went back to his Oncologist 2 years ago and he said he had never encountered this type of postradiation pain before.  Since looking on the Internet, I find that hard to believe.  At any rate, he had no idea how to cure the problem and our GP has no treatment options either.   I would love it if he would try hypnosis or some other form of alternative therapy but unfortunately he's very much against this kind of thing.
 
 

Pete's Co-pilot
Regular Member


Date Joined Jan 2007
Total Posts : 21
   Posted 1/10/2007 7:43 PM (GMT -7)   

lindhawk,

I'm sorry you had the need to seek out this site, but I'm certain you'll receive support and information that will help guide you and your husband through this together.  There are so many wise and caring people here.

Post radiation treatment problems can be numerous. The damage is insidious, often clinically silent, progresses slowly and can continue long after the last treatment has ended.  

Radiation Proctitis is a well known complication of radiation treatment for prostate cancer. My first suggestion is that you and your husband find another oncologist immediately for consult because you must first identify the cause of the pain before a proper treatment plan can be developed.

Where are you located?  Are there any wound healing centers or hospitals in your area that offer HBO?  Hyperbaric oxygen therapy has been used successfully to improve and sometimes completely resolve the symptoms of this difficult condition.

Keep us posted. You'll be in our thoughts and prayers. 

 

 


Pete's Co-pilot,
Lisa


lindhawk
New Member


Date Joined Jan 2007
Total Posts : 6
   Posted 1/11/2007 6:46 PM (GMT -7)   
Hello Lisa and thanks for your comprehensive post.
 
We are Canadians who winter in Florida and live in Ontario in the summer.  Our medical insurance for the US doesn't cover my husband's condition since it is pre-existing and he couldn't afford to see someone here.  We don't return to Canada until the end of April.
 
We have never heard of HBO being used for the treatment of radiation proctitis although I have heard it used for other conditions/diseases.  Also have never heard of "wound healing centers" but will Google them for our area.
 
Your concern and advice is much appreciated.
 
Linda

Pete's Co-pilot
Regular Member


Date Joined Jan 2007
Total Posts : 21
   Posted 1/12/2007 6:26 AM (GMT -7)   

Linda,

You have some excellent resources in Ontario for HBO.  Google "Hyperbaric Ontario".  You'll also find info on wound care centers treating chronic, non-healing healing wounds.(If that is what your husband's problem is, you will find help there.  Again, you must get a definative dx)

I'm sorry your insurance won't cover treatment in Florida.  We have some wonderful resources here as well! 

Keep us posted and get that diagnosis pinned down.

Lisa


Pete's Co-pilot,
Lisa


lindhawk
New Member


Date Joined Jan 2007
Total Posts : 6
   Posted 1/12/2007 12:29 PM (GMT -7)   
Lisa - After only about half an hour surfing, I found a reference to HBOT for radiation tissue damage. (Sorry but all my life I've been a "doubting Thomas"!) It seems that this treatment is offered in Ontario and is covered by our provincial medical insurance. I also called a centre in Winter Park that offers the service and will tell my husband about it when he gets in later.

If this proves to be the answer to his problems, we will owe you one huge thank you!

Cheers

Linda

Pete's Co-pilot
Regular Member


Date Joined Jan 2007
Total Posts : 21
   Posted 1/12/2007 2:36 PM (GMT -7)   

Linda,

I'm glad you found info that was helpful.  I work for a company that manages wound care centers in partnership with hospitals across the country, so I'm very familiar with HBOT and the many conditions for which our patients receive HBO treatments.  

I'm executive secretary to our company's corporate medical director of HBO and I also take care of our medical advisory board members, so I have access to a great wealth of information, articles, research literature and personal contacts.  So if there is anything else I can offer, please don't hesitate to ask!

Please let me know how things progress!  You'll both be in my thoughts.

Lisa

ps.  Pete and I have some property not too far from Winter Park - up near Inverness and Brooksville!!  Take care.


Pete's Co-pilot,
Lisa


lindhawk
New Member


Date Joined Jan 2007
Total Posts : 6
   Posted 1/12/2007 4:25 PM (GMT -7)   
We winter in Sun City Center, Lisa, but it's a small world, isn't it given that you and your husband have property near Winter Park.

No wonder you know so much about this treatment.....! My husband says he's going to wait til we get back to Canada to seek the treatment but I'm going to get him to ask for a referral now (which we need up there) so he can get seen as soon as we get back. It sometimes takes us up to 4 months to see a specialist or get this sort of special treatment. It's free, but it comes with that price tag.

Thanks again

Linda

Pete's Co-pilot
Regular Member


Date Joined Jan 2007
Total Posts : 21
   Posted 1/12/2007 5:17 PM (GMT -7)   

Wonderful news!  If you want info about any centers or Dr.'s you plan to visit in Canada, I might be able to help.  My corp. medical director is extremely well known, respected and CONNECTED in the hyperbaric community.  There's a good chance he might be aquainted with whomever you decide to see, so let me know if you need ANYTHING!  I'll gladly tell you what I can!

Best wishes and please keep us updated.

Lisa


Pete's Co-pilot,
Lisa


lindhawk
New Member


Date Joined Jan 2007
Total Posts : 6
   Posted 1/12/2007 7:40 PM (GMT -7)   
Again, many thanks Lisa. We'll talk again I'm sure.

Cheers

Linda

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 1/22/2007 2:11 PM (GMT -7)   

Hi Linda,

This “Hug”  is  just  for   yeah  

 

I’m so glad you found us!!   Isn’t this forum amazing!!!!!!  I’m thrilled to see that Lisa *Pete’s Co-Pilot has been so helpful!!   Again ~ this forum is truly a life saver in so many ways…..  Even 7 years after the fact!!!!  You just never know unless you ask… that help can be just around the corner!!

 

I truly hope you’re finding answers that are going to be help both of you now!!

 

I’m late sending you our special Welcome but I’ve been looking for this post for days and a moderator came on to help me to locate it!!!!!!  Thank you 7Lil

 

 

                                Sending a “Warm Welcome” …to You!

 

I know we can “all” make your journey smoother just by being here for you!  This is a great forum!!! which you’ve joined… so stay with us.

 

This disease is a journey that truly can take a toll on a relationship.  But ~ in a lot of cases it brings a couple closer together.  I’m so saddened to think that your husband would want to fight this on his own…  I hope you’re finding the strength to pull him out of this negative thought pattern.  It is a negative that neither of you need and it’s most likely caused by the pain.

 

Waiting until April ~ to do nothing… should not be in the equation.

Get help now… As Gordy mentioned in a previous post………..  a lot of improvements have happened over the past 5 years and there could be something that a doctor could do to help you from now until April.

 

I would strongly suggest you get a mild sleep aid to help him get the rest he needs and you may need one too!  Sleep is a healer… for the mind as well as the body… the situation is definitely more serious… than just needing sleep ~ but getting the sleep can make things look so different… in a positive way.

 

Our thoughts and prayers are with you as you continue on this journey with stones that are very slippery at the moment.  Hopefully ~ they will become more stable once you can both move in a more positive direction.

 

It’s time to get rid of this phrase…. (Sorry but all my life I've been a "doubting Thomas"!)

If you think it ~ it will be true.  It’s time to move in a positive direction…. So things will start looking brighter.  Pull from our strength here on the forum and allow the negatives to leave ~ so you can help him and he can then start to help himself.

 

Be proactive like you are ~ by calling ahead to schedule his appointment for when you return home.  Make more calls now to find out what you both can do to start moving forward... He has to help in this cause……….. being proactive!!!!  It is an “US/WE” Journey so it’s important that he not back away….

 

Excerpt from: Our Journey

It is an “US / WE” disease and must be treated as an “US / WE” Journey.  Make this a “team” journey…. Do everything together.  You will need each other and each other’s strength!

 

“Hand-in Hand”       “Heart-to Heart”

nice words borrowed from Tim G…

 

 

“God Bless You”

 

It's a little prayer  ~  "God BlessYou"

...but it means so much each day,

It means may angels guard you

and guide you on your way.

 

Take care and know our thoughts and prayers are with you.

In Friendship ~ Lee & Buddy 


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

June 29th ~ PSA Less than 0.1 Non-detectable

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