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I definitely have depression but I'm not currently taking any meds

for it. I tried Sarafem but it didn't help much.

> > I had a question for anyone that is interested in answering. I

was

> > diagnosed with SLE in the fall of 2002. I'm still in the

learning

> > stages and learning what to expect and how to cope with this

> disease

> > so any info I can get would be appreciated. I have done a lot of

> > research and it seems I find more and more related complications

> and

> > I was wondering if those are symptoms of other underlying

> > conditions. I know people who have Lupus also have other

> autoimmune

> > disorders. Do any of you have other illnesses etc. that were

> brought

> > on by Lupus?

> >

> > Thanks very much.

> >

> > Tracie

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Oh my Carol, I'm not gonna say I'm happy to hear that. Thanks for

the info.

> , I have fibro, bursitis, RA, OA , TMJ, IBS, GERT. and they

all started because of the lupus...lol I'm working on the whole

Alphabet...lol Carol

> Question

>

>

> I had a question for anyone that is interested in answering. I

was

> diagnosed with SLE in the fall of 2002. I'm still in the

learning

> stages and learning what to expect and how to cope with this

disease

> so any info I can get would be appreciated. I have done a lot of

> research and it seems I find more and more related complications

and

> I was wondering if those are symptoms of other underlying

> conditions. I know people who have Lupus also have other

autoimmune

> disorders. Do any of you have other illnesses etc. that were

brought

> on by Lupus?

>

> Thanks very much.

>

> Tracie

>

>

>

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Almost overnight, my sats have fallen drastically. I used to be able

to walk out and get a glass of water without any O2 but almost

overnight, that is no longer the case. I am dropping into low 80's

just walking a few steps. Also, with O2 on 4lpm, I am still dropping

to high 80's. Is this normal? I didn't think that deterioration

happened like this. Also, the pain in my ribs has intensified. I have

been taking morphine for the pain but didn't need to use it too much.

Now, I am taking it every 4 hours. Help!

Diane

IPF June 07

New Brunswick, Canada

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I am no expert, but don't they have to know where the cancer is to radiate it? Do you even have cancer? If you do, what is the probability it will kill you? I remember reading in Dr. Walsh's book that men who had a prostatectomy and PSA's <0.1 for ten years almost never die from prostate cancer. If you can, go to s Hopkins and see Dr. Walsh or a doctor his office recommends. You may need treatment or you may just need to wait and monitor your PSA. Charlie D. To: ProstateCancerSupport Sent: Sunday, July 22, 2012 9:46 AM Subject: Question

Some of you may remember that I posted about two months ago that, after 9 years of undetectable PSA, I went back on TRT in July 2010. In May of 2012, my PSA came back at 0.12. It has been two months, and I just had a blood draw to re-check PSA.

I have not seen a uro in 8 years. I had a prostatectomy in 2002, and I have always kept PSA checked every six months with my GP. So, my question, in prparation for the worst-case scenario, is this: IF the PSA has risen above 0.20 and I will need radiation, do I need to see a uro first...or can I just go directly to a rad oncologist for treatment?

I will get my results next Thursday...and I hope the news is good. But if it is not, just wondering what your thoughts would be on this.

Thanks!

MikeH

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Mike,I suggest that you consider going to an oncologist who treatsA lot of men with prostate cancer instead of a urologist. The usual next step would be to radiate the general prostate bed. Recently there have been two places that have used yet unapproved contrast agents that supposedly can identify specific locations in the prostate bed which can then allow for specific targeting of the radiation.The problem with this methodology is that it will not show the specific locations if the PSA is under 2.0. General thought is that for the untargeted radiation treatment radiation to be effective the PSA cannot exceed 1.0. If you're interested in using these two new contrast agents you should contact Sands Lake Imaging in Orlando Florida or the Mayo Clinic. T Nowak, M.A., M.S.W.Director of Advocacy & Advanced Prostate Cancer Programs

Some of you may remember that I posted about two months ago that, after 9 years of undetectable PSA, I went back on TRT in July 2010. In May of 2012, my PSA came back at 0.12. It has been two months, and I just had a blood draw to re-check PSA.

I have not seen a uro in 8 years. I had a prostatectomy in 2002, and I have always kept PSA checked every six months with my GP. So, my question, in prparation for the worst-case scenario, is this: IF the PSA has risen above 0.20 and I will need radiation, do I need to see a uro first...or can I just go directly to a rad oncologist for treatment?

I will get my results next Thursday...and I hope the news is good. But if it is not, just wondering what your thoughts would be on this.

Thanks!

MikeH

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Mike,

I agree with the excellent advice from both Charlie and .

According to one of the videos from Dr. Snuffy Myers (I don't remember which

one), cancer that recurs more than six years after primary treatment is very

slow growing and easy to control.  It would only rarely be fatal.  In your case,

assuming you have cancer and it wasn't a glitch in the test, it took nine years

just to reach 0.12.  So far at least, it's not a very aggressive cancer.

I think that in your shoes I would skip the urologist.  A urologist is a surgeon

and surgery is unlikely to be advisable for you.  Instead, I would make two

appointments, one with a radiation oncologist and one with a medical oncologist.

In both cases, I believe it is important to talk to doctors with deep experience

with prostate cancer.  There are around 300 different kinds of cancer and there

are both medical and radiation oncologists whose primary experience is not with

PCa.  Nobody can keep up with new developments in 300 different diseases. 

Nobody who has spent the last six months treating breast cancer or lung cancer

or colon cancer is going to be the right person to treat your PCa.  They may be

able to help you, but I think they're unlikely to be as helpful as the person

who specializes in PCa, or at most, that plus a few other cancer types.

There are two ways that I know of to find the right doctors.  One is to ask

around.  If you let us know where you live, someone here may be able to

recommend someone near you.  Ask in other groups too, and among people in your

community.  The other way I can think of is to go to one of the National Cancer

Institute designated " Comprehensive Cancer Centers " .  These are usually teaching

and research hospitals that NCI believes to have the best care for many

different cancer types, and to offer treatments based on the latest research. 

The list of NCI designated cancer centers can be found here:

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

If you consult with someone and don't like him, don't think he knows enough, or

don't think he's treating you seriously, try to find someone else.  Cancer isn't

something that should be treated someone other than trustworthy real expert.

mentioned that salvage radiotherapy delivered to the prostate bed should

only be given if the PSA is below 1.0.  I've also read that the best chance of

working is if the PSA is below 0.4.  So if you go that route, you want to do it

before your PSA gets too high.  But it looks like you do have time to visit both

types of oncologist and to think carefully about what's going on.

One thing Dr. Myers tries to do is to slow or arrest the growth of PCa by low

risk, low side effect means - like good diet and exercise plus supplements that

are thought to help like pomegranate extract.  This is something to discuss with

a medical oncologist.

I know that you can't help but be concerned.  I would be too.  But I think the

odds are very strongly in your favor for dealing with this successfully.

Best of luck.

    Alan

Question

>

> Some of you may remember that I posted about two months ago that, after 9

years

> of undetectable PSA, I went back on TRT in July 2010.  In May of 2012, my PSA

> came back at 0.12.  It has been two months, and I just had a blood draw to

> re-check PSA. 

>

> I have not seen a uro in 8 years.  I had a prostatectomy in 2002, and I have

> always kept PSA checked every six months with my GP.  So, my question, in

> prparation for the worst-case scenario, is this:  IF the PSA has risen above

> 0.20 and I will need radiation, do I need to see a uro first...or can I just

go

> directly to a rad oncologist for treatment?

> I will get my results next Thursday...and I hope the news is good.  But if it

is

> not, just wondering what your thoughts would be on this. 

>

> Thanks!

>

> MikeH

>

>

>

> ------------------------------------

>

> There are just two rules for this group

> 1 No Spam

> 2 Be kind to others

>

> Please recognise that Prostate Cancerhas different guises and needs different

> levels of treatment and in some cases no treatment at all. Some men even with

> all options offered chose radical options that you would not choose. We only

ask

> that people be informed before choice is made, we cannot and should not tell

> other members what to do, other than look at other options.

>

> Try to delete old material that is no longer applying when clicking reply

> Try to change the title if the content requires it

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FWIW --

The structures which the urologist is trained to treat, are gone.

I'd go straight to the oncologist, or the radiation oncologist.

And before I did that, I'd go through the MSKCC website and USTOO website and

learn about " salvage " treatments. You might want to skip radiation, and go

straight to hormone blocking.

>

> > Some of you may remember that I posted about two months ago that, after 9

years of undetectable PSA, I went back on TRT in July 2010. In May of 2012, my

PSA came back at 0.12. It has been two months, and I just had a blood draw to

re-check PSA.

> >

> > I have not seen a uro in 8 years. I had a prostatectomy in 2002, and I have

always kept PSA checked every six months with my GP. So, my question, in

prparation for the worst-case scenario, is this: IF the PSA has risen above 0.20

and I will need radiation, do I need to see a uro first...or can I just go

directly to a rad oncologist for treatment?

> > I will get my results next Thursday...and I hope the news is good. But if it

is not, just wondering what your thoughts would be on this.

> >

> > Thanks!

> >

> > MikeH

> >

> >

>

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Mike,

I don’t know if you have bothered to

follow the exchange between me and Alan on how prostate cancer will be cured,

but I believe that the responses you have received to your post illustrate more

clearly than I can say how diverse the options for treatment are and how little

firm scientifically based evidence there is on the best course of action.

I am no scientist and I do not claim any

special knowledge, but I am in a position to observe a wide variety of men,

their treatments and the outcomes because of the stories on my website. This

material is of course anecdotal and for that reason is not accepted as good

scientific evidence, but I believe that observation can produce enlightening

information.

Against this back ground I can tell you

that there have been some very curious ultra-sensitive PSA results over the

past year or so. An unusually high number of men have been disturbed by the

reporting of PSA numbers where before they were undetectable for many years. In

the majority of cases subsequent tests remain at a similar ‘detectable’

level but have not consistently risen, although they appear to be less accurate

than in the past in that they rise and fll. This, together with a recent study which

concluded “Until the significance of ultrasensitive prostate specific

antigen doubling time is better characterized, the decision to proceed with

salvage therapy should not be based on prostate specific antigen doubling time

calculated using ultrasensitive prostate specific antigen values.” and the fact that men in Canada and Australia have reported that

their doctors are advising against the use of ultra-sensitive PSA tests, make

me think that there has been some significant change in the ultra-sensitive PSA

test protocols. Only one pathology laboratory has confirmed this so far, but I believe

it is more widespread than that.

As I say this is not scientifically based,

but anecdotally. However it may give you a line of enquiry to your path lab or

your medical advisors. If they have seen more upward movement in PSA levels

than they might expect, this may be worth investigating further.

All the best

Prostate men need enlightening, not

frightening

Terry

Herbert - diagnosed in 1996 and

still going strong

Read A Strange Place for unbiased information at http://www.yananow.org/StrangePlace/index.html

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of domihaa

Sent: Sunday, 22 July 2012 11:46

PM

To: ProstateCancerSupport

Subject:

Question

Some of you may remember that I posted about two

months ago that, after 9 years of undetectable PSA, I went back on TRT in July

2010. In May of 2012, my PSA came back at 0.12. It has been two months, and I

just had a blood draw to re-check PSA.

I have not seen a uro in 8 years. I had a prostatectomy in 2002, and I have

always kept PSA checked every six months with my GP. So, my question, in

prparation for the worst-case scenario, is this: IF the PSA has risen above

0.20 and I will need radiation, do I need to see a uro first...or can I just go

directly to a rad oncologist for treatment?

I will get my results next Thursday...and I hope the news is good. But if it is

not, just wondering what your thoughts would be on this.

Thanks!

MikeH

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Thanks to all who have replied and offered suggestions.

I live in Augusta, Georgia, Alan. There may be someone local who has experience

in treating PCa patients with radiation. I have also read of a Dr. Cowell who

has a comprehensive clinic in Greensboro, GA, which is about 60 miles. For my

previous treatment (prostatectomy), I went to Atlanta. It's about a three-hour

drive. Columbia, SC, is 75 miles. If anyone knows of rad oncologists who

specialize in PCa to recommend in my area of the US, please do so.

I do have another question. I noted in previous emails that this slight blip in

my PSA came after I had resumed TRT after 9 years. I assume there are different

*varieties* of PCa. Are some prostate cancers androgyn receptive whereas others

are not? If so, is there any present medical technology that can be used to

determine if a man's PCa is more.... or less... androgyn receptive?

Your reassurances are a help. Yes, I realize that I have a slim statistical

chance of dying of PCa. And I know there are others facing much greater

challenges with this disease. I thank you all for your time and patience.. and

for sharing your knowledge and resources.

MikeH

>

> Mike,

>

> I agree with the excellent advice from both Charlie and .

>

> According to one of the videos from Dr. Snuffy Myers (I don't remember which

one), cancer that recurs more than six years after primary treatment is very

slow growing and easy to control.� It would only rarely be fatal.� In your

case, assuming you have cancer and it wasn't a glitch in the test, it took nine

years just to reach 0.12.� So far at least, it's not a very aggressive cancer.

>

> I think that in your shoes I would skip the urologist.� A urologist is a

surgeon and surgery is unlikely to be advisable for you.� Instead, I would

make two appointments, one with a radiation oncologist and one with a medical

oncologist.

>

> In both cases, I believe it is important to talk to doctors with deep

experience with prostate cancer.� There are around 300 different kinds of

cancer and there are both medical and radiation oncologists whose primary

experience is not with PCa.� Nobody can keep up with new developments in 300

different diseases.� Nobody who has spent the last six months treating breast

cancer or lung cancer or colon cancer is going to be the right person to treat

your PCa.� They may be able to help you, but I think they're unlikely to be as

helpful as the person who specializes in PCa, or at most, that plus a few other

cancer types.

>

> There are two ways that I know of to find the right doctors.� One is to ask

around.� If you let us know where you live, someone here may be able to

recommend someone near you.� Ask in other groups too, and among people in your

community.� The other way I can think of is to go to one of the National

Cancer Institute designated " Comprehensive Cancer Centers " .� These are usually

teaching and research hospitals that NCI believes to have the best care for many

different cancer types, and to offer treatments based on the latest research.�

The list of NCI designated cancer centers can be found here:

>

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

>

> If you consult with someone and don't like him, don't think he knows enough,

or don't think he's treating you seriously, try to find someone else.� Cancer

isn't something that should be treated someone other than trustworthy real

expert.

>

>

> mentioned that salvage radiotherapy delivered to the prostate bed should

only be given if the PSA is below 1.0.� I've also read that the best chance of

working is if the PSA is below 0.4.� So if you go that route, you want to do

it before your PSA gets too high.� But it looks like you do have time to visit

both types of oncologist and to think carefully about what's going on.

>

>

> One thing Dr. Myers tries to do is to slow or arrest the growth of PCa by low

risk, low side effect means - like good diet and exercise plus supplements that

are thought to help like pomegranate extract.� This is something to discuss

with a medical oncologist.

>

> I know that you can't help but be concerned.� I would be too.� But I think

the odds are very strongly in your favor for dealing with this successfully.

>

> Best of luck.

>

> ��� Alan

>

> ----- Original Message -----

> >

> >

> > Some of you may remember that I posted about two months ago that, after 9

years

> > of undetectable PSA, I went back on TRT in July 2010.� In May of 2012, my

PSA

> > came back at 0.12.� It has been two months, and I just had a blood draw to

> > re-check PSA.�

> >

> > I have not seen a uro in 8 years.� I had a prostatectomy in 2002, and I

have

> > always kept PSA checked every six months with my GP.� So, my question, in

> > prparation for the worst-case scenario, is this:� IF the PSA has risen

above

> > 0.20 and I will need radiation, do I need to see a uro first...or can I just

go

> > directly to a rad oncologist for treatment?

> > I will get my results next Thursday...and I hope the news is good.� But if

it is

> > not, just wondering what your thoughts would be on this.�

> >

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Chuck Maack wrote:

> Likely the best Radiation Oncologist regarding prostate cancer

> in your area is Dr. Critz in Decatur, Georgia.  Here is

> contact info and " insist " you only want an appointment with

> him, not any of his colleagues.  He is the head man and the

> most experienced:

I'd like to temper that view just a bit.

It sometimes happens that you just can't get an appointment with

the top doctors.  Sometimes the appointment secretary will say,

" I'm sorry, but Dr. X is not accepting new patients at this

time " , or perhaps, " Dr. X's calender is completely filled for the

next six months. "

However RCOG is a pretty well respected place.  I imagine that

they can hire good people whenever they want, and I would also

imagine that Dr. Critz and his colleagues would get rid of any

doctor that they thinks isn't up to snuff.

I would also imagine that a lot of what they do is based on a lot

of internal discussion about what their best practices ought to

be, how to set up their equipment the right way, how to interpret

scans and images, and so on, so that the treatment won't vary too

much from doctor to doctor.

So, if you can get an appointment with Dr. Critz in a reasonable

time frame - go for it.  If you can't, I wouldn't reject RCOG as

a good place to go.

    Alan

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Marvin Moskovitz wrote:

> My Prostate Cancer is contained to the Prostate Gland, can the

> Cancer go into the lymphnodes? But would it take a long time?

> I'm trying to decide whether to remove the whole Prostate or

> have the radioactive seeds planted In the Prostate.

Marv,

There are a number of aspects to your question that I'm going to

address separately.

First of all, you can't be certain that your cancer is confined

to the prostate gland.  The odds are that if the PSA is below 10

and the Gleason score is low, 6 or maybe 3+4=7, it's likely that

the cancer is contained.  If your PSA and/or Gleason are higher,

then there is more chance that the cancer has spread outside the

gland.  It might be contained or it might not.

If the cancer has spread outside the prostate, and if the amount

of cancer is large enough to show up on a scan, for example an

MRI image or CT scan (MRI is more sensitive), then a scan can

tell you it has spread.  But it can't tell you that it hasn't

spread because, if the amount of cancer that has spread is very

small, it can be too small to show up in the images.  But it

could still be there and still, possibly (though not always!)

develop and grow in the future.

There are statistical studies that tell you your odds of organ

confined cancer.  See: http://nomograms.mskcc.org/Prostate/index.aspx

Secondly, if the cancer does spread outside the prostate, my

understanding is that it most commonly spreads to within a few

millimeters of the prostate itself, then after that grows into

the lymph nodes and perhaps the seminal vesicles.  Sometimes it

can get to these areas soon after the cancer first appears but,

especially for low PSA, low Gleason cancers, it usually takes

some time, often many years after the first elevated PSA test,

before it spreads.

Finally, if the cancer has spread, it's not clear that surgery is

the best treatment.  Many people think that, if the cancer has

escaped the prostate but is still near it (around the prostate,

in the lymph nodes, and/or in the seminal vesicles), the best

treatment is radiation, not surgery - though it requires external

beam radiation in addition to, or in place of, brachytherapy.

The reason is that a radiation oncologist can easily treat the

whole area without cutting into it, whereas a surgeon would have

to either cut out the whole area - a tricky task that might have

lots of side effects, or trust that he could biopsy the areas

during the surgery and figure out exactly what to cut out.  I

don't think that all surgeons do that and, in fact, I suspect

that most don't.  It's a lot of extra trouble, requires a higher

level of skill, and they may not get much extra money for it -

all of which is a reason why it is very important to get the best

surgeon you can if you decide on surgery.

As far as the prostate gland itself, but surgery and

brachytherapy attempt to treat the entire gland, not just part of

it.  They may not succeed.  One doctor told me that a surgeon

thinks he got the whole prostate, but it's not easy to tell for

sure.  It's not all bounded by an easily recognized border.  A

radiation oncologist attempts to plant the seeds to get coverage

of the entire prostate.  But he too can make mistakes.  So, once

again, you want the best and most experienced doctor you can get.

I recommend the following course of action:

 1. Go to the MSKCC nomogram website reference above.

    Plug in  your numbers, look at everything that the program

    can tell you, write it down or print it out.

 2. Consult with both a surgeon/urologist and a radiation

    oncologist - the best you can find.

    Bring the MSKCC results with you and show them to the

    doctors.

    Write your questions down in advance, and write down the

    doctor's answers.  A tape recorder can be a good way to

    record what they said.  Many doctors like that because they

    know that you'll remember what they tell you.

    If you aren't good at taking notes, and don't want to use a

    recorder, maybe you can bring a wife or other relative or

    friend with you to take notes.  That's a good idea anyway

    because they may think of questions that you missed.

    Some questions include:

        What do you think are my chances that the disease is

        really organ confined?  Why?

        If you haven't already had this test then: Should I have

        an endo-rectal MRI or other test to see if the cancer has

        spread?  Why or why not?

        Is there a chance that I don't need treatment at all

        right now and should just use active surveillance?  Why

        or why not?

        What side effects should I expect to have?  [Note: if

        either doctor tells you that his patients have neglible

        side effect, he's probably lying.  Take that into

        account.]

        For the surgeon:

            Will you biopsy the lymph nodes and seminal vesicles

            or do some other test to find out if there is cancer

            there?

            Will you remove those organs?  Why or why not?

            If you do remove them, what additional side effects

            might I have?  Will impotence or incontinence be more

            likely?

        For the radiation oncologist:

            Do you think you should radiate around the prostate

            itself?  Why or why not?

            If so, how would it be done?  Will there be

            additional side effects?

    I'm sure there are other questions to ask.  Try to think of

    them before you go.  Doctors are often hard to see and cost a

    lot of money so you want to get the most that you can from

    your visits.

Personally, I wish I didn't have to learn anything about cancer.

I wish I could just walk into my general practitioner's office

and say, " Take over.  Tell me what to do.  Do whatever is in my

best interests. "

Many patients actually do that.  An oncologist once told me that

quite a few patients come to his office and say something like,

" Doc, do whatever you have to do.  Don't tell me anything.  I

really don't want to know about it. "

Unfortunately, I believe that a lot more of those patients die of

cancer than the patients who learn about their disease, ask

questions, make informed decisions, and participate.

Marv, I know what you're going through.  We've all been there.

It isn't pleasant.  But I hope we've been of some help.

Best of luck.

    Alan

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Hi Chuck,

Thank you for your reply,,Have a wonderful weekend.

Best Wishes,

Sheila

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