Why do doctors not offer radiotherapy?

Hi Julia!  Adjuvant RT is controversial as I have unfortunately had to learn over the last week.  Even for locally advanced PC.  My father's pathology report came back having one focally positive margin and one lymph node involved and we have mixed opinions on treatment.  If the Gleason score is greater than 8, there is seminal vesical involvement or lymph node involvment, some studies have not shown that their is a survival benefit to adding RT.  This is most likely why RT was/is not always recommended.  It has been the most frustrating part of this entire process. 

We met with one Radiation Oncologist who recommends RT and referenced a study by Zagars that showed an increase in survival with the addition of RT.  However, the Oncologists that we have met with recommend waiting to find out the PSA score, start HT and then down the road if necessary and beneficial do RT.  It makes decision making really hard, when even the experts don't agree!  One thing I read yesterday out of Dr. Walsh's book is that patients at this stage are not "curable", but treatable. I just keep reminding myself that my father is not a statistic and we want to do everything we can to cure him and give him the best quality of life.  All we can do at this point is make the best decisions we have with the info available and pray!  (I'm not an expert, just a daughter who doesn't want her dad to be sick)

By the way, how is your husband doing on the HT?  My dad is really worried about the side effects.  Best wishes and continue the fight!!

Doting Daughter

 

Julia,

Targeted Radiation Therapy can be used to control pain at some point, IF it were to come to that. Medication (hormone blocking) therapy is often enough for a number of years as a first line treatment for cancers with bone mets. Your DH's cancer is not treatable by means other than medication, complete removal of the testes and / or chemo. I am sorry that no Physician has taken the time to explain this to you. They assume we can read their minds. Right now, we'll all hope his PSA responds well to treatment for a long, long time :>)

Swim

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That's great, thank you both for explaining that.

I worry that we are missing a treatment which could make a big difference

Doting Daughter, Rick's oncology nurse told him his cancer was not curable, but that we should remember that there are all kinds of incurable conditions (such as diabetes, coeliac disease etc) that can be managed for a very long time.

He hasn't really had any side-effects just yet. It's only been five weeks since he started HT so maybe they'll catch up with him any day. The nurse said most likely side-effects are hot flushes, fatigue, 'breast' tenderness and loss of libido. I hope your dad responds well to the treatment and has little in the way of side-effects. Thank you so much for the info

Swim

It's possible that the nurse or consultant did mention something about why they wouldn't recommend RT but we were in such a state we hardly took anything it at all. I wish we had taken someone with us who could have taken notes - I worry that we missed important details. His first PSA after the treatment was started will be in November so will be sure to post how he has got on. Thank you too

Julia

hi julia: my husband also has advanced pca which has spread to his spine, pelvic and shoulders. he has had several radiation treatments whenever he has pain. our oncologist's nurse said that radiation helps kill the cancer cells, while another will disagree. same goes for urologists and oncologists. go figure. anyway, my husband started radiation shortly after diagnosis and starting hormone therapy since he was in pain. it gets confusing but we were told that they start with one therapy and try to hold off on the next so if one stops working there is a backup therapy. you can only have so much radiation to the same area that's affected. do research and if you aren't satisfied with what your doctors say, question it. i have learned to take whatever documentation and articles i can find with us. they seem to pay more attention if you come prepared. push for what you want, don't just sit back. it is your husbands and your future at stake not their's. it's been a roller coaster ride for us but as you go through this you will learn to be assertive with doctors. you have to be. it's been a year and one half since my husbands diagnosis so if you have anything you want to know or want to just talk i'm here. good luck and god bless you and yours.

Hey Julia,

Lifeline is right about taking charge of your own treatment. Doctors have their favorite "one size fits all" treatments. Its up to us to balance treatment with quality of life issues. Do what is right for YOU...

Jim

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Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.

Hello and thanks to you both for your replies yesterday

I guess as my husband isn't in any pain at the moment, they are holding of the RT in case he needs it in the future.

As for being assertive, we do find it very difficult. I was brought up to be a 'people pleaser' so end up nodding and saying 'yes I understand' when inside I'm thinking 'but why can't he have this or that' when the doctor or nurse tells us what treatment will be best. This is something we will both have to develop.

Lifeline, you say that your husband has been battling this for a year and a half. Do you mind me asking how long he has been experiencing pain? Did he have the mets when he was diagnosed? I guess I'm wondering how long it takes before the HT stops being effective against the pain. Sorry if it's too personal, no need to respond if it is.

This forum is a godsend. Who know how we would have found out information or been able to ask questions as and when they pop up?

Sending very good wishes to you and yours,

Julia

Julia,
Our surgeon told us that RT does not increase length of life, but our oncologist disagrees and may offer it to us in the future. We don't think we will opt for it except for pain relief. Right now my hubby, is Stage IV, lymph node positive, no bone mets yet, is receiving Zoladex plus Casodex. I'm wondering why your husband is not being offered at least the two drugs?

Hi wingsofeagles

Hey Julia,

This is the place to rant. So let it all hang out gal. You have done the research and like you say have a good grip on the options. You are way ahead of the game so keep pushing your doctors. We all had to do that no matter what our prognosis.

And please stay here with us. We need you...

Jim

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Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.

I am battling advanced PC with my dad...and have been for right at two years now.  He is 62 years old.  He has had lymph node removal(was supposed to be prostate removal, but had spread when they opened him to do surgery so they took the lymph nodes instead.), an orchiotomy, 7 months of taxotare chemo with DN101-a clinical study, and now...he is doing Casodex for about 2 months now.

We too were given mixed reviews on radiation.  It was explained to me that PC is a "whole body disease"-at least once it has spread.  Radiation is for "point specific" areas...like if the cancer is only in the radiation bed.  They said to radiate my dad's areas of spread-at that time was pelvic..it would be dangerous to his surrounding areas-could damage organs.

I just keep researching...trying to find new things that work..or are in the works.  I recently heard a new drug called Satraplatin is in the works for getting tested for FDA approval.  It is a drug that works when hormones have failed and shows promise for reversing Hormone Refractory patients.  That sounds very promising.  My theory is to buy as much time as we can by finding things that work for at least a while..and pray like crazy that something will come along that actually "cures".

The Casodex so far is working on my dad..and he has had no side effects.  His PSA at last check was 0.6..and we go back to MD Anderson in Nov.  We recently started at this location about 2 months ago...moving over from Cancer Centers of America.  His scans are all clean with the exception of a suspicous spot in his bones that was very small -that we are watching.

I know that like with my precious daddy...if only LOVE could cure him...he'd be all better by now :)  I love him so much...it frightens me to think of even losing him.  It sounds like you love your hubby as much so I truly understand.  You'll be in my prayers.  Hang in there!

Julia,

Sorry that I have not responded sooner to your questions. I have been out of town. Just got back in from my six month Elagar (HT) shot. I am on both Casodex and Zometa. 50mg. Casodex per day and monthly infusion of Zometa. Test show that the combination of both drugs do offer some good benefits. You should "take the bull by the horns" and, along with your husband, make the decisions on what course of care you need. Our doctor made that very statement today to my wife and me during our visit. We are in charge of the course of treatment. I know things are different in the UK, but, this is a fight. I can't remember who said it, they said "don't leave anything in the bag", when it came to winning the game. Discuss these options with your doctor and, with their input, you make the choice.

You both are in our prayers and thoughts every day. Win the game.

War Eagle to all.

Walt