Resources for Prostate Cancer Families, Page One
New To Prostate Cancer?
‘m Sandra Weinhardt, email email@example.com. I write webpages about how to stay sane in a small town. Recently we received a shock in the mail. It was a little scrap of paper that said “Abnormal PSA, 4.6”. That turned our lives upside down.
here was no letter, just a line that said to contact your physician. Bill had had his annual free screening for prostate cancer, thanks to Caylor-Nickel Medical Center here in Bluffton, Indiana, never expecting anything to be wrong. We didn’t know what PSA meant, except that it is related to prostate cancer.
Read My Disclaimer
Our First Scare
he 4.6 reading that was reported to us is a measure of Prostate Specific Antigen. It’s something in the blood that tells if the prostate gland is acting up in any way. This test should be run at any physical a man has. When the number increases, even if it is in the normal range of up to 4.0, you should look for the cause. Know your PSA and find out what the last few readings were. Keep this information where you can find it.
ombined with a manual exam by the doctor, this test can help us find prostate cancer early enough to kill it, to get rid of it before it spreads, to let you survive. There is a 75% chance that an abnormal but still fairly low PSA score will be caused by “BPH,” Benign Prostatic Hypertrophy, which is “a lot of cells but none of them cancerous.” We were in the unlucky 25%, but we were most fortunate that it was found so early.
es, I know men have found out they have prostate cancer even though their PSA scores were below 2.0. It is documented. These are usually rarer forms of prostate cancer, not the “garden variety” adenocarcinoma.
f you care about a man, don’t let him die of embarrassment. Tell him that you have your mammogram or pap test every year, and he has to have this test done too, along with a DRE (digital rectal exam.) In fact, the PSA can show cancer even before the doctor can feel anything in the gland.
his was our case. The lump that the doctor could feel was not cancerous; it had calcium in it. The cancer was on the smooth side of the prostate and was discovered by the pathologist who examined the needle biopsy samples. That was very very lucky for us.
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What to do first
f you receive an abnormal test result, call the doctor’s office and make an appointment. Go with your partner to this appointment.
eanwhile, you do two kinds of research. One is to find out who else in the family has had this disease or maybe had it. The other is to get on the Internet, or go to your Cancer Society and find out the latest ways of detecting and treating Prostate Cancer. The literature calls it PCa and occasionally CaP. Why? Because you have to make the decision yourself. The physician will not advise you. You have to decide what treatment to have, if any.
ooks at the library may well be out of date. But whatever your sources, be prepared to be scared, baffled and confused. Angry at the medical world for not having any definite answers. Angry at fate. Angry and afraid and almost unable to think. “Why us?” Make no mistake, this is a family disease. Everything from now on will affect both of you. Your husband’s sons are at higher risk to get the disease, and at an earlier age.
ust when you are in the most emotional turmoil, you learn that no one has the answers. There are theories, and treatments, and test groups to experiment on, and really expensive meds that insurance may or may not pay for. There are gurus and frightmongers. Suddenly you are going to become experts on a little, deadly bit of tissue.
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The Physician is the Key
f the experts can’t agree, how can we feel secure about deciding what to do after a confirmed diagnosis of cancer? The answer is to find the doctor(s) whom you can trust to do the treatments you feel you can live with. The doctor who will be available or have someone else available when you have questions or symptoms. The doctor with an understanding group of people on the front desk, the ones who will or won’t get your anxious question to that doctor before quitting time.
here’s even another big glossary page just for acronyms
ou find out what the estimated cancer stage is. There is a stage for before surgery, determined from the biopsy and DRE, and another one determined after the surgery, from pathologists’ reports.
ou learn about the Gleason score and the Narayan and Partin I numbers. You gather knowledge every hour, every day. You are still too shocked to make much sense of it. Write it all down. Print out the pages. Eventually your head will clear enough to start making decisions.
ou can start to make charts of the different treatments. Some are appropriate for advanced cancer, others are better for earlier stages of PCa. But what combination of treatments? Don’t depend on a physician to know what’s the latest on the internet. Many of them do; I don’t hear about them. I read too much about the ones who don’t care what the latest treatments are.
es, latest doesn’t mean “best.” But I want to know what’s happening, and why, and whether it might help, and whether it has harmed people. But always remember, everyone must decide on an individual basis. Again, there are no certain answers.
his might be a good time to review your health insurance policy. If you have a choice of programs within an HMO, the PPO option is excellent for letting you choose whatever doctor you feel you need. The premium you pay will be higher, but you will have more choice. If you have never dealt with insurance, find someone who can help you. Your local cancer society might be a resource for insurance advice.
e are terribly lucky that my husband’s urologist says to regard him as our family doctor now. He will let us find an oncologist who may send us to Mayos or wherever. We realize how lucky we are that we live where we can go to a specialist.
ere, from Rattler, is a list of specialists who might be in your area, or somewhere where you can get to them. Some have email addresses, others have faxes. Some of them even tell you their secretary’s name. Wouldn’t that be nice, to call a number and not have a stranger on the other end?
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Read My Disclaimer
he 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 when we were diagnosed. I don’t know your emotions, or what side effects you could or could not live with. If I am wrong in what I find out, it can eventually kill my husband. This is terrifying to me.
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. Remember, I’m not a guru, just a fellow traveler down this road. Thank you. Sandra Weinhardt
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What Is a PSA Test?
(In Case You Don’t Know)
hat is a PSA test? It’s simply a test run on a blood sample that identifies the prostate specific antigen in your blood. This antigen is made by prostate cells. The prostate is a gland at the bottom end of the bladder. The ureter runs through the prostate, into the penis and to the opening at the end of the penis. If the prostate grows too big, it can push on the ureter and make it difficult to urinate.
ven without any symptoms, some of those prostate cells can become cancerous. No one knows why. There are no symptoms in the early, curable stages, so this cancer is called a silent killer. Physicians say every man will get this cancer if he lives long enough.
hy should your man have this test? There are many reasons. Prostate cancer is the second most common cancer among men, after skin cancer. It is the third leading cancer killer in the US, after lung and breast cancer. Each year around 300,000 men are diagnosed with prostate cancer, but no one talks much about it. Please, have the test run. Get that first reading, called a “baseline PSA.” Then if it is normal, you can keep a very close eye out for any possible rise.
es, there are a lot of little technicalities about the score, but that’s not what this site is for. You can find out the most esoteric details on other sites, listed on the next page.
hat if your doctor won’t run the test? This is already happening to people I’ve talked to. Get another doctor to do the test. Then if it is positive, you can face off against the first doctor and become an activist. If it is within the normal range, you will have that score for future comparison. Another point is that the same lab should run each test with the same brand of test, for the most accurate comparison. You must ask which exact test was run and by what laboratory. Sometimes you are patronized and told you don’t need this information. That is ridiculous. You may need it, and you have the right to know.
he test costs $20 to $50, and most insurance companies won’t pay for mass screening. It is incredibly short-sighted of them. Caught early, this cancer is curable and far less expensive than treating incurable cancer. Prostate cancer has been considered incurable if it has spread outside the prostate, but that is changing too, despite some insurance companies lack of cooperation.
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Resources: Action to take and Links on the Internet, a separate page.
Update on Bill’s Operation, a separate page.
Why This Page?
n October, I was corresponding with a graphics artist who mentioned that he knew a mutual friend of ours who had cancer, and that he (the artist) did too. That was right before we got the “abnormal” PSA score notification in the mail. So I unburdened myself to this perfect stranger, early in October, before we even got in to see our urologist for the first time. It was the right thing to do.
e has written me 105 letters so far, and I have written him 93 letters by email, as of 31 October ’97. That’s a lot of questions answered. He has sent me many valuable links, and it’s his suggestion that I make these prostate pages. It’s therapy for me, but I hope it will help anyone who finds it.
y husband wasn’t wild about the idea of my making a Prostate Cancer page. I told him it is his duty to try to save a life, and I really want to help people new to this disease. He is getting used to the idea of sharing. It was very hard to find out information at first, partly because I was in shock. Now I’m almost a veteran.
lso, in the support groups and on the internet, I encounter way too many younger men (men in their forties and fifties) finding out they have prostate cancer. It used to be considered a disease of old men. It Is Not. We **have** to get the word out.
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The Circle, a Mailing List
here ***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.
The contents of this page but not the links to outside resources of course) are ©copyright 1997-98 by Sandra Weinhardt, all rights reserved.
The woman in the small picture is ©1996 by Lincoln Weinhardt of Brazil. I can’t locate his website anymore.
Date: Tuesday 13 Apr 1999
From: Virgil H. Simons, email
Subject: New Hope in the Battle against Prostate Cancer
The American Association for Cancer Research has their Annual Meeting currently on-going. One of the most encouraging aspects was the amount and diversity of research being done in prostate cancer. The recent headlines on lycopenes in tomatoes are only part of the story.
To get a firsthand look at all of the ps and to view the research abstracts, go to: http://aacr99.bluedot.com/
While you’re there you may also want to send a note of Thanks to Dr. Margaret Foti, the executive director, for her effort in providing this tool as well as for her efforts in including more of the survivor and advocate communities in the organization.
Pass the information on to your friends so that we all can continue to fight the beast that is prostate cancer.