Update...confused

January 5, 2012

Hi All,

We went to see this radiation oncologist,,,we were not happy with him,,he said just the opposite of what he said 6 months ago,,let me give you some info so you will know what I'm talking about,,my husband before treatment PSA 7.9, Gleason 9,,he had 44 IMRT treatments and one year of hormone therapy,,Zoladex,,..We were a little upset with this doctor,,,my husband's PSA is slowly rising,, it started at 0.08,,every three months PSA went to 0.47 to 0.52 to 0.53 to now 0.70. I suggested having his PSA checked every month for 4 months and if continues to climb we will know that the cancer is back,,,,he talked to us like we didn't know what we were talking about,,then he said,,"With a Gleason 9,,,any treatment you have would probably not cure of even take care of the cancer...but I'm not telling you that you have cancer",,,I was upset,,in four years since we started this journey no doctor has ever said that to us. My husband didn't have his hearing aid's in and he didn't hear a lot of what the doctor was saying,,,but what he did hear he didn't like. This doctor wants us to see his urologist because he said that this doctor was more of a specialist in prostate cancer. We do really like his urologist and haven't seen him for 3 years. He found the cancer and he took the time to listen to our concerns and he also took the time to explain things to us,,so we see him on the 17th of this month. My husand does not want to go back to that radiation oncologist and I told my husband I didn't see any reason to go back to him,,he's had radiation,,he can't have any more. So we move on..plus my husband's blood pressure wasn't good,,,,165/95 so we have to see him primary for that.

I know Chuck wants him on hormones now. My concern is that if they put him on hormones now,,,his body may get used to it than it may not work at all. I did explain to my husband that he can't have anymore radiation and surgery is out of the question..I think,,,I'm just confused,,because the radiation oncologist told us not to worry about his PSA that it was good. I don't think agree. I know it's slowly rising and this oncologist wants us to wait 6 months before we have it checked again,,,I looked and the doctor and I put up three fingers and I said we would have it checked then. He gave us a slip to have his PSA checked in six months...our primary agrees with us that we should have it checked in three months and he has a standing order for that.

What questions should we ask??? I don't want him on hormones yet,,,I just think it maybe too soon....we will wait and see what his urologist says,,,he's also a surgeon too.

Well, I'll be thinking of all the members of this group and I will keep you all in my thoughts and prayers.

Sincerely,,

Sheila

January 5, 2012

Hello Shelia. I can just add that following radiation therapy, it is my understanding that the irridated prostate cells will continue to die off, even after hormone therapy has ended. And the PSA will rise as healthy prostate cells regenerate and produce testosterone. The key is the trend lines for testosterone and PSA. The two should trend up at the same rate. At some point the PSA should level out at what is the *nadir*. My radiation oncologist's nurse practicioner stated that they were looking for the PSA to level out at or below a PSA of 2.0. Now, Chuck can chime in with other words of wisdom concerning when is the best time to act following treatment for PCa with radiation and hormone therapy. Regards, T Hi All, We went to see this radiation oncologist,,,we were not happy with him,,he said just the opposite of what he said 6 months ago,,let me give you some info so you will know what I'm talking about,,my husband before treatment PSA 7.9, Gleason 9,,he had 44 IMRT treatments and one year of hormone therapy,,Zoladex,,..We were a little upset with this doctor,,,my husband's PSA is slowly rising,, it started at 0.08,,every three months PSA went to 0.47 to 0.52 to 0.53 to now 0.70. I suggested having his PSA checked every month for 4 months and if continues to climb we will know that the cancer is back,,,,he talked to us like we didn't know what we were talking about,,then he said,,"With a Gleason 9,,,any treatment you have would probably not cure of even take care of the cancer...but I'm not telling you that you have cancer",,,I was upset,,in four years since we started this journey no doctor has ever said that to us. My husband didn't have his hearing aid's in and he didn't hear a lot of what the doctor was saying,,,but what he did hear he didn't like. This doctor wants us to see his urologist because he said that this doctor was more of a specialist in prostate cancer. We do really like his urologist and haven't seen him for 3 years. He found the cancer and he took the time to listen to our concerns and he also took the time to explain things to us,,so we see him on the 17th of this month. My husand does not want to go back to that radiation oncologist and I told my husband I didn't see any reason to go back to him,,he's had radiation,,he can't have any more. So we move on..plus my husband's blood pressure wasn't good,,,,165/95 so we have to see him primary for that.I know Chuck wants him on hormones now. My concern is that if they put him on hormones now,,,his body may get used to it than it may not work at all. I did explain to my husband that he can't have anymore radiation and surgery is out of the question..I think,,,I'm just confused,,because the radiation oncologist told us not to worry about his PSA that it was good. I don't think agree. I know it's slowly rising and this oncologist wants us to wait 6 months before we have it checked again,,,I looked and the doctor and I put up three fingers and I said we would have it checked then. He gave us a slip to have his PSA checked in six months...our primary agrees with us that we should have it checked in three months and he has a standing order for that.What questions should we ask??? I don't want him on hormones yet,,,I just think it maybe too soon....we will wait and see what his urologist says,,,he's also a surgeon too. Well, I'll be thinking of all the members of this group and I will keep you all in my thoughts and prayers.Sincerely,,Sheila

January 5, 2012

>

> Hi All,

>

> We went to see this radiation oncologist,,,we were not happy

> with him,,he said just the opposite of what he said 6 months

> ago,,let me give you some info so you will know what I'm

> talking about,,my husband before treatment PSA 7.9, Gleason

> 9,,he had 44 IMRT treatments and one year of hormone

> therapy,,Zoladex,,..We were a little upset with this

> doctor,,,my husband's PSA is slowly rising,, it started at

> 0.08,,every three months PSA went to 0.47 to 0.52 to 0.53 to

> now 0.70. I suggested having his PSA checked every month for 4

> months and if continues to climb we will know that the cancer

> is back

An excellent plan I think. I thought so when I recommended it

and I think so now.

I was in a clinical trial of radiation at the National Cancer

Institute. When my PSA began to rise after radiation, the NCI

radiation oncologist suggested to me that I get a PSA test every

month for a while. It wasn't a plan that I thought of myself.

It was a plan suggested by Dr. Anurag Singh, a man who was then

at NCI and is now Director of Clinical Radiation Research at the

Roswell Park Cancer Institute.

The plan worked well for me because my PSA bounced around for a

long time and the frequent tests showed that it wasn't really

going up.

Furthermore, I just don't see the problem with this plan. It's

not going to cause any harm to your husband. It is not

expensive. It may not give you the information you're hoping to

get from it, but it can't possibly give less information that the

doctor's plan of checking again in six months. You and your

husband want to do it. So why not? I bet the doctor didn't give

any reason for his refusal to do it.

> ,,,,he talked to us like we didn't know what we were

> talking about,

Sometimes I think they give out arrogance pills at medical

school.

> ,then he said,, " With a Gleason 9,,,any treatment

> you have would probably not cure of even take care of the

> cancer...but I'm not telling you that you have cancer "

There's no question that Gleason 9 is dangerous, but sometimes

the radiation treatments do work, even for Gleason 9. Whether

your husband was cured or not is just not yet known. That's what

you're trying to find out.

> ,,,I was

> upset,,in four years since we started this journey no doctor

> has ever said that to us. My husband didn't have his hearing

> aid's in and he didn't hear a lot of what the doctor was

> saying,,,but what he did hear he didn't like. This doctor

> wants us to see his urologist because he said that this doctor

> was more of a specialist in prostate cancer. We do really like

> his urologist and haven't seen him for 3 years. He found the

> cancer and he took the time to listen to our concerns and he

> also took the time to explain things to us,,so we see him on

> the 17th of this month. My husand does not want to go back to

> that radiation oncologist and I told my husband I didn't see

> any reason to go back to him,,he's had radiation,,he can't have

> any more. So we move on..plus my husband's blood pressure

> wasn't good,,,,165/95 so we have to see him primary for that.

If you have a urologist that you like and trust, I strongly agree

that you should go see him. If there is still cancer then and it

looks like you need further treatment, then it would be ideal to

see a medical oncologist if you can find one who specializes in

prostate cancer. The urologist might be able to recommend a good

one. But I think that seeing a doctor you like and trust is an

excellent first step.

Dana Wilbourn suggested seeing Dr. Myers in Virginia. I don't

think there are any better than Dr. Myers if you can afford the

$2,000 and the travel. But there are other good medical

oncologists besides him. A good place to look is at one of the

NCI designated cancer centers. See:

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

> I know Chuck wants him on hormones now.

Chuck is a very knowledgeable man and if he and I disagree it

usually turns out that he's right and I'm wrong.

But in this case I still think that it's a good idea to get

a number of additional PSA tests before getting hormone

treatment. I have had no recurrence of my cancer in the eight

years since my radiation treatment. But it took several years

after I finished ADT before my PSA dipped below .70 and stayed

there.

My first PSA after the hormones had finally worn off was 0.8. It

went on up to 1.8 before it came way down again.

Your husband may still have cancer. But he may not. We just

don't know yet and it's desirable to find out.

> My concern is that if they put him on hormones now,,,his body

> may get used to it than it may not work at all.

According to the standard theory, as I understand it, you don't

have to worry about using up hormone sensitivity and getting used

to it. The theory is that there are some hormone insensitive

cells and they will grow at the same rate whether you get ADT now

or get it later.

In fact, ADT administered early seems to prolong life better than

ADT administered late. That's because the cancer is easier to

control when there's less of it.

However hormone therapy has undesirable side effects. Most men

don't like it (I didn't). A lot of women don't like what it does

to their husbands. And very importantly, it suppresses PSA in a

way that makes it impossible to find out how well the radiation

is actually working, whether there actually is a recurrence and,

if there is a recurrence, how rapidly the cancer is growing.

That information is valuable both in avoiding unnecessary

treatment and in choosing the best treatments if treatment is

necessary.

> I did explain to my husband that he

> can't have anymore radiation and surgery is out of the

> question.

It is possible to get more radiation and/or surgery but most

doctors won't do it because, as I understand it, the treatments

are much more difficult than the first time, the side effect

rates are very high, and the success rates are pretty low.

Apparently most men do better if they go on ADT for a recurrence.

> .I think,,,I'm just confused,,because the radiation

> oncologist told us not to worry about his PSA that it was good.

> I don't think agree. I know it's slowly rising and this

> oncologist wants us to wait 6 months before we have it checked

> again,,,I looked and the doctor and I put up three fingers and

> I said we would have it checked then. He gave us a slip to

> have his PSA checked in six months...our primary agrees with us

> that we should have it checked in three months and he has a

> standing order for that.

I think that the rad onc was right that .70 is indeed still good

for this stage of the treatment. However I understand how hard

it is not worry. Having it checked more often might help

alleviate the worries.

Good for your primary physician. Three months is better than

six. Personally, I don't see a problem with one month intervals,

but I like 3 better than 6.

The doctors sometimes fear that the patient will track small ups

and downs every month and get excited about changes that aren't

really significant.

That's a legitimate concern. Maybe 3 months is better than 1.

It's something to discuss. My hope is that by getting frequent

tests you'll get more information.

> What questions should we ask??? I don't want him on hormones

> yet,,,I just think it maybe too soon....we will wait and see

> what his urologist says,,,he's also a surgeon too.

The key question is, I think:

What, in the doctor's view, constitutes ironclad, or at least

very highly probable, evidence of a recurrence?

I don't believe that ANY radiation oncologist would regard a

PSA of .7, especially so soon after treatment, as clear

evidence of recurrence.

> Well, I'll be thinking of all the members of this group and I

> will keep you all in my thoughts and prayers.

And we'll be thinking of you.

Best of luck to you and your husband.

Alan

January 5, 2012

Alan,I just wanted to ring in here regarding treating Gleason 9 prostate cancer. In April of 2004, I was diagnosed with Gleason 9 PCa (PSA was 5.1). I had 38 IMRT radiation sessions, plus 2.5 years of hormonal therapy. Since then my PSA has been low and steady at around 0.15 - 0.20. The fact that I am writing this note close to 8 years later suggests that it is possible to treat (cure??) high grade PCa successfully.Manny RosenbaumOak park, MI

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