Updated 2 December 2003
URL is /opine/prosec4.html
On the first page:
Resources: Action to take and Links on the Internet, on this page.
Another separate page is
Update on Bill's Operation, a separate page.
My first impulse was to search on the internet. I'll list those links for you. My artist friend sent me most of them. Then we finally contacted a few people by telephone, and I went to the Fort Wayne Cancer Support Services (not the same as The Cancer Society) where they loaned me books and gave me many pamphlets and videos. While I was there, several people came in to get supplies. I hadn't wanted to think about cancer before Bill was diagnosed. Now I know how valuable Cancer Support Services can be.
A support group called Us Too has
meetings all over the country. As of December 2003, this is the
contact information they sent me.
Us TOO International, Inc.
5003 Fairview Ave.
Downers Grove, IL 60515-5286
We women are encouraged to come to the Us Too meetings. Some of the support groups split into two groups so we can all talk more freely. There is also a local PCa support group, Man to Man, where we live. I believe we may be allowed to go to the support group for people who have all different kinds of cancer. I'm not sure.
There's a mailing list I joined called p2p, Physican to Patient. Be aware that there are some scary tales told by men whose local doctors won't cooperate in any of the accepted treatments. You have to be brave to read this. I tell myself that the patients who write are the ones with the problems, and that there are surely many men who sailed through this ordeal but never write about it. The doctors on this list have patiently answered my questions. They are devoted to helping PCa patients.
There ***is*** an email, mailing list support group for wives and partners, families and the PCa patients themselves. It's called The Circle. I'm so glad I found it. Thanks to Ellen too, who wrote me about it.
One of the circle members, Jacqueline Strax, has made an amazing PCa site called PSA RisiNg. Jacqui told me to advise you all that her emphasis is on advanced Prostate Cancer, not the early stage that (we hope) my husband is in. There is much political action and much valuable information on Jacqui's site. It is awesome.
Jacquie lived near us in Indiana at one time, when her husband was a professor here. Even though she is now in New York City because her husband has to be treated there, I feel as if she is right next door. She is that fine a writer. UPDATE: Jacquie has lost her husband but she is inspired to carry on with her excellent PSA RisiNg.
The Cancer Information Line...1-800-422-6237
(They returned my call promptly and let me talk as long as I needed to.)
There are raging controversies over the treatments: radiation with tiny seeds, 3-D conformal radiation, surgery, hormone treatment, freezing the prostate (cryosurgery,) and some off-the-wall ones too. This is a bewildering time, especially if you have no medical or pharmacological or chemistry background. This is the stage my husband and I were in as I wrote this page.
Okay, you have read this far. I'll give you the list of links. My friend has reminded me several times that if a page on the site is the wrong one at the wrong time for us, then try to find the better pages, the ones more appropriate for our stage in this long process. Don't give up on the entire site.
If just diagnosed: http://www.prostatepointers.org/newlydx.html
www.pcri.org prostate cancer research institute reccomended by Dr. Strum
www.smartlifeforum.org another reccomendation by Strum. His speech is on it.
www.lef.org article by Dr. Strum on nutrition, and add pomegranate extract he said in an update.
P2P mailing list
http://prostateca.asco.org/ information for oncologists
Michael Korda has written a book of his triumph over PCa. Ann Prospero tracked it down for us. It is "Man to Man: Surviving Prostate Cancer" by Michael Korda. Thanks, Ann.
I loved how Korda didn't censor out his emotions. He reported what happened to him and how he felt about it. Terrific book. (Update: 3-1-98: so far, all our friends who have read this say they have had a much easier time of it than Korda had. Still, we **love** this book.]
http://www.checkbiotech.org/orphan_News_treatmentandhealth.aspx?infoId=3241 The HG-PIN dilemna
http://www.cancerline.com/cancerlinepat/10250_10419_0_0_0.aspx?mid=31 An Astra-Zeneca page for international visitors, not for United States. U.S. readers should use www.ustoo.com
http://search.ctrl.ucla.edu/texis/search?pr=healthsciences-dgsom&query=prostate&x=1 UCLA research papers on PCa
Bill's Operation and updates, a separate page.
Back to the Opening Page?
Read My Disclaimer
The only thing I am an expert on is terror and panic. What I have dug out of the web is different from what you will find. My friend wants me to emphasize that I can't advise you about treatment. I knew nothing on this subject a few weeks ago. If I am wrong in what I find out, it can eventually kill my husband. This is terrifying.
I don't know any more than I have written here. Find facts, please. Don't be influenced by other peoples' emotions at this time in your lives. Don't expect me to be able to tell you more than I have written on these few pages. I'm not a guru, just a fellow traveller down this road. Thank you.
It looks as if we'll get through this. I first wrote this page one week and one day after the diagnosis in October of 1997, and already we were able to forget about it for several minutes at a time, and make plans for our life ahead, and laugh at the things we ordinarily laugh at. Doesn't seem possible, but this normal part of our relationship is still happening. They say it helps to find urologists who don't pussy-foot around the topics of incontinence and impotence.
The contents of this page but not the links to outside resources of course) are ©copyright 1997-2008 by Sandra Weinhardt, all rights reserved.
The woman in the small picture is ©1996 by Lincoln Weinhardt of Brazil
This page is by Sandra Weinhardt. Send all additions and corrections to me at email@example.com