My husband has cancer--decision time
Robins521
weeks ago: PSA 4.7, Gleason 7 (3+4). Doctor said stage 3c, based on DRE (large
tumor on one side) & MRI. Bone scan & lymph nodes good, but MRI showed
"possible minimal involvement of seminal vessicles." Doctor recommends hormone
therapy for 9 months & radiation starting after 2 weeks; he says we shouldn't
wait more than a week or two to get started. He says that without treatment,
life expectancy is 5-6 years. We had been bracing for this, but were shocked
when the doctor said that all this puts J with about 5% of men diagnosed with
prostate cancer, meaning that 95% are stage 1 or 2.
We want to get other opinions & hope to have appointments scheduled in the next
2 weeks with another surgeon, an oncologist & a radiologist. We are in NYC so
we should be able to get the best treatment, but getting these appointments is
not easy.
Any help would be appreciated. We'd like to hear from anyone who has been
through hormone therapy and/or radiation--how was it & how did you handle the
side effects. J fears hormone therapy even more than radiation, especially for
9 months. Is it typically that long? Does anyone have experience with proton
beam radiation? If anyone has been a stage 3c, please get in touch & share your
experiences.
Thanks & God bless all of you.
Jean
Leonard Evens
> Hello & many thanks to everyone who wrote. My husband (age 67) was diagnosed 2
> weeks ago: PSA 4.7, Gleason 7 (3+4). Doctor said stage 3c, based on DRE (large
> tumor on one side) & MRI. Bone scan & lymph nodes good, but MRI showed
> "possible minimal involvement of seminal vessicles." Doctor recommends hormone
> therapy for 9 months & radiation starting after 2 weeks; he says we shouldn't
> wait more than a week or two to get started. He says that without treatment,
> life expectancy is 5-6 years.
I certainly don't claim to know more than your doctor, and I'm sure I
know quite a bit less. But you might ask him how he came up with an
estimate of 5 to 6 years without treatment. That seems much shorter
than anything I've seen, but the stage 3 diagnosis is presumably what
makes him so pessimistic. He is presumably basing it on published
studies, and it would be nice to know what they are to be able to
evaluate the estimate.
Also, since there is a lot of difference of opinion among oncologists
about how to use hormone therapy, it certainly makes sense to seek more
opinions. If you let the other doctors know what this doctor has said,
you might get to see one more quickly than you would otherwise. Or one
of them might question the need to proceed that quickly, and you would
find that reassuring.
I hope someone here can give you some useful advice, but I think what
you need a really good prostate cancer specialist. If you can't get to
talk to one soon in NY, there are some public websites where experts
answer questions. The American Cancer Society has one for prostate
cancer, although it is a bit tricky to find. You need to register, but
then you can post questions and you will get an answer from an expert
very quickly.
> We had been bracing for this, but were shocked
> when the doctor said that all this puts J with about 5% of men diagnosed with
> prostate cancer, meaning that 95% are stage 1 or 2.
It is mostly based on the DRE, and none of us here can evaluate that.
The MRI seems to confirm the doctor's conclusion, but MRI results are
supposedly difficult to interpret for prostate cancer. I really think
you need another specialist to do a DRE and evaluate the evidence
collected so far. It still puzzles me that your primary care doctor
could have missed it if the DRE result is so extreme.
>
> We want to get other opinions & hope to have appointments scheduled in the next
> 2 weeks with another surgeon, an oncologist & a radiologist. We are in NYC so
> we should be able to get the best treatment, but getting these appointments is
> not easy.
Don't be bashful about being aggressive. Ask them to call you if an
appointment opens up. But if you already have appointements scheduled
within your first doctor's window, you should be able at least to get an
idea if the need to start treatment is quite that pressing.
>
> Any help would be appreciated. We'd like to hear from anyone who has been
> through hormone therapy and/or radiation--how was it & how did you handle the
> side effects. J fears hormone therapy even more than radiation, especially for
> 9 months. Is it typically that long? Does anyone have experience with proton
> beam radiation? If anyone has been a stage 3c, please get in touch & share your
> experiences.
I don't have any direct experience with hormone therapy, but it is my
impression that there are almost as many approaches as there are
oncologists. It also matters whether or not the hormones are being used
to control the cancer or in order to suppress it to make it more
treatable by radiation. In the former case, where no attempt is made
to cure the local cancer, some oncologists won't begin therapy until
there are clinical symptoms of spread such as evidence in a bone scan.
(Your husband is clearly nowhere near that stage.) Others want to begin
immediately and continue for the rest of the patient's life. Still
others will use hormones intermittantly. If the purpose of the
hormones is to make the cancer more susceptible to radiation damage, it
is common to use hormones for a few months and then start radiation
therapy. Your doctor seems to be doing something else, and you should
find out from him just what the purpose of the therapy is. It may be
that it is an ad hoc approach based on the details of your husband's
diagnosis and your doctor's interpretation of it.
>
> Thanks & God bless all of you.
Good luck. I hope some of the other doctors you consult will be more
reassuring.
>
> Jean
>
>
--
Leonard Evens l...@math.northwestern.edu 847-491-5537
Dept. of Mathematics, Northwestern Univ., Evanston, IL 60208
marvin blumberg
in NYC. I had IMRT plus hormone ablation. It is now almost 6 years
later and any trace of the cancer is gone and I never had a single,
lasting affect from either the Hormones (Lupron + Casodex) or the
radiation.
Kettering is the best cancer center in the US . If you can go there, I
would suggest that you consider it. I can put you in touch with my
doctor there. For my full story click on:
http://www.oncolink.com/templates/books/books.cfm?b=8
I started my treatment when I was 69.
If you need more info, let me know.
Marv...
Robins521 <robi...@aol.com> wrote in message
news:20020803150931...@mb-fp.aol.com...
harry
Since then my wife had thyroid cancer and she chose Johns Hopkins in
Baltimore. We were so happy with Johns Hopkins - I think if I were to
choose again I would go there instead.
At Kettering - the doctors wanted cash - and did not deal with my
insurance company at all. This cost me about $6000 extra.
At Hopkins - we gave them the insurance card and never saw a bill.
The service at both was top notch. The building and grounds at Hopkins
is nicer. At Hopkins they have a nice fenced and guarded parking lot.
They allow your family to stay in your camper or motorhome there. It was
a nice feeling having family just outside waiting.
Good luck on the treatment. We have been lucky - both my wife and I are
nearly normal after cancer surgery. I am 54.
harry
marvin blumberg
insurance (Medicare + Empire Blue Cross Blue Shield) and never asked
me for a single payment. Empire is not an HMO. In the end, it cost me
less than $1,000 out of pocket expense.
Marv...
harry <ever...@ptd.net> wrote in message
news:everhart-DA745F...@news5.ptd.net...
Claude
"Leonard Evens" <l...@math.northwestern.edu> wrote in message
news:3D4C3C4F...@math.northwestern.edu...
I have a question about staging. I did not have clear margins after my RP,
and I am under the assumption that caused my staging to go up from a Stage 1
or 2 at biopsy to Stage 3 at pathology. Is that correct? If so, it is
difficult for me to believe that only 5% of men are Stage 3. Am I wrong, or
is this doctor wrong, or is there a difference in our understanding of Stage
3?