Originally Posted by CM63
So April 1 was the big day. Here are his results. Of the 12 samples #6 left Apex had cancer with a Gleason result of 6 and the sample was 25%. The right Apex showed suspicious cells I think it also said ASAP which I read some place meant something! They gave us a whole bunch of books and stuff to read and another appointment on the 15th when he will spend more time with us explaining procedures etc so we can decide what to do. Now is when we want to decide not in two weeks! I'm really getting tired of reading and I'm so confused and getting more worried. I've been reading this board and we've found it helpful but still can't decided. My husband really doesn't want to do radiation so we are trying to decide between radical open or robotic. What we need to find out is the wait time and do we have time to wait. ...
Should we even do anything right now and do watchful waiting. I hate this idea and I think he does too. ... Oh my I'm so worried....
Your reaction to your husband's cancer puts in words what so many of us have felt - basically recoilling from the very idea of having cancer
and wanting to get rid of it and out of your lives as soon as possible, not even wanting to have to learn another fact about it
, about its treatment options, and about complications and side effects of treatment!
Here's are a few facts that may offer some comfort: you have only been facing the diagnosis for less than one week, and most of us find that we regain our balance and can better put things in perspective as days pass. It may take a few more days though, or even weeks, or a month or so. It should help if you and your husband realize that his case has low risk features, that prostate cancer is usually a slow growing disease, and that Canada, especially including Ontario, has some superb resources for combatting prostate cancer.
I too want to welcome you to this board
that all of us wish we would never have had a reason to use. But it's a good board, as you probably already know, and you've already had some helpful responses. A word about me - like almost all of us who participate here, I have had no enrolled medical education, but I've learned a lot in coping wih my own challenging case.
Here's what strikes me about the low risk aspects of your husband's case: a fairly low PSA of 5, well below the threshold of above 10 that suggests higher risk; a Gleason Score of 6, which is the most common score for patients diagnosed these days, a score that suggests a lower level of aggressiveness; a 12 core biopsy, which is a pretty good probing of possible trouble sites; a finding of only one positive core of the twelve, though another had some suspicious cells - even up to three positive cores of twelve would not raise the risk much and your husband had only one; only 25% cells positive for cancer in the one positive core, well below the level of 50% positive that would suggest some higher risk, and with added emphasis here since no cancer was found in any other core; and a normal DRE. Overall, if you have to have a positive diagnosis, these are the results you would want to have!
Here is the only elevated risk characteristic I see: location of the cancer in the left apex. That suggests some added risk because the membrane that surrounds the prostate - the prostate capsule - is thinner at the apex, so it is a bit easier for cancer to penetrate the capsule there. It might be useful to get a saturation biopsy to see the exact extent and location of the cancer, or to get a color Doppler ultrasound guided biopsy from an expert (may not be any in Canada, though there is one in Michigan or Minnesota - Dr. Fred Lee), but with such an overall low-risk case and an already known location risk, I'm not sure that doctors would think you would be getting much added useful knowledge from one of those staging procedures. Still, it could be reassuring. (I'm hoping to read those Wall Street Journal articles on saturation biopsies that daff has mentioned.)
I hope you, and perhaps your husband, can overcome your abhorrence of this disease, or at least tone it down enough so it doesn't interfere with your decision making and basic peace of mind. That may be a difficult challenge for you, as your post suggests you like to be able to make decisions quickly and get issues behind you. Here are some points that may help, in addition to the slow-growing nature of the vast majority of prostate cancers and the low-risk characteristics of your husband's case.
First, by the time prostate cancer is discovered, most of us have had it for years. In fact, quite a few prostate cancers are so slow growing that it takes more than 100 years for the tumors to double in size. That means we already know how to live with
cancer; we just need to learn how to live with knowing
we have it.
Second, we are not "abnormal" when we have prostate cancer - "unhealthy" yes, but not abnormal. When very detailed autopsy exams were done on prostates of men with no signs of prostate cancer at various ages, researchers found that about 50% of men in their 50s had the disease, and that percentage increased to virtually 100% for men who were about 100 years old, with the percentage increasing about 10% for every added decade of life. That means that a high majority of men have the disease but are unaware of it, suffer no ill consequences during their lifetimes, and die of something else. It's the other guys, those who truly do not have the disease, that are abnormal - meaning not "typical", as we get older.
Third, while the "big C" scares us
, other health threats are or should be taken more seriously. (Take appendicitis: untreated, that can kill us in days. But we are comfortable living with an appendix because we know it can be taken care of with high effectiveness and efficiency if that becomes necessary. It may help if you can think of prostate cancer more like that.) Dr. Charles "Snuffy" Myers, a leading medical oncologist specializing in prostate cancer, compares a diagnosis of prostate cancer to the canary in the mine that dies because of bad air: it's a warning that other things may be amiss. Heart disease and diabetes are prime suspects. You and your husband may have extra worry because of whatever experiences his dad had with prostate cancer seventeen years ago. However, this is no longer "our father's disease." Prostate cancer technology from prevention, to diagnosis, to case assessment, to treatment, to follow-up have improved by leaps and bounds since then. Survival is much better, and complications and side effects are becoming milder, on average.
There are at least two options open to your husband that will completely or mostly preserve his and your present quality of life: active surveillance and one-time advanced hormonal blockade. The latter is still highly investigational and involves triple hormonal therapy with follow-up maintenance, so I won't go into it unless you ask; I know a lot about it because I've been on the intermittent version of that therapy (not one-time) for over nine years now. Just briefly, your husband would probably experience loss of libido and some ED for about a year, as well as some other side effects, but would then almost certainly recover virtually to where he was before therapy while enjoying outstanding control of the cancer and preserving his options for other therapies, such as surgery or radiation.
Active Surveillance (AS) is a much better form of watchful waiting, though many of us use the terms interchangeably. Basically, AS is open to men with truly low-risk diseased, determined after careful assessment, and usually involves a follow-up biopsy at about the first and second year points to confirm that the patient is on a good course. Of course, there is other monitoring, particularly with PSA tests, which are highly meaningful for case monitoring, with a very small chance for being misleading if a man has a Gleason 6 cancer. The goal is to defer major therapy like surgery or radiation, hopefully forever but at least gaining a few to more years with your current quality of life, and keeping the option for cure wide open by jumping on the disease promptly and with high and proven effectiveness if it proves more aggressive than was thought. That hidden aggressiveness and need for curative therapy happen roughly one third of the time. But, it's looking like about two thirds of the patients do not need therapy!!!
Fortunately for you and your husband, the man who is arguably the world's leader in AS is Dr. Laurence Klotz, who leads his AS program at the U. of Toronto, Sunnybrook, a couple of hours from you. You might want to have a consultation there, or at least try to talk to his office by phone. That one higher risk indicator - the location of the cancer in the apex, along with your husband's young age, might suggest to the AS team that your husband would run too high a risk as an AS patient. At least a consultation would enable you to rule AS in or out as a reasonable option.
Both AS and one-time advanced hormonal therapy would also gain you and your husband TIME - time to enjoy your current quality of life and freedom from the burdens of care for any consequences of therapy, and time for therapy technologies, knowledge of lifestyle countermeasures, and mild medications to improve. These are not small considerations; to me they are big deal items.
This is already getting quite long, and you are already tired of reading about PC. But I want to add one more point - something you can do now to help your husband. It appears that lifestyle tactics - diet/nutrition/supplements, exercise (especially including strength exercise) and stress reduction (not so easy after a diagnosis, but possible), and mild medications (finasteride or Avodart), help control prostate cancer, especially for low-risk cases. Research results are mixed and somewhat confusing, but we now have a fair idea of fairly easy tactics that can help. Vitamin D3 is highly likely to be important for most of us, especially for those who live as far north as you and your husband do; related to vitamin D3, he should probably get a Bone Mineral Density scan (not for cancer, for bone density) and a 25-hydroxy vitamin D level blood test. There are several books on lifestyle tactics; the one I like best (very easy to read), is "Beating Prostate Cancer: Hormonal Therapy & Diet," by Dr. Charles "Snuffy" Myers. I've posted some highlight information in a thread on this board: "Nutrition & lifestyletactics - books, resources and a quick summary." I've also posted information about lycopene, soy, pomogranate juice/extract pills, selenium, and vitamin E. Finasteride is now available (a generic version of Proscar), and it's sister drug is the widely advertized Avodart. It appears that both are somewhat useful in combatting prostate cancer.
Good luck to you both, and keep your spirits up!