Arthur’s done this all before. Hundreds of people around the world asked Arthur their questions about prostate cancer from 1994 to 1997 on the original Prostate Cancer InfoLink.
Please understand that Arthur is not a physician. He is only a reasonably well educated layman with some experience of prostate cancer and its problems. He cannot provide you with medical advice. You should always talk to your doctor about your clinical condition and how it should be managed.
You may post your question for Arthur using the comments/reply box below. Questions and answers are retained on this page for approximately 60-90 days from the time they are originally posted.
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Hi.
I am 6 weeks out from RP prostate removal. My first PSA test reads 0.6.
I was told by my surgeon that it should have read 0.1. I was told that this can happen and that it can take some time to drop to 0.1. I was also told that my cancer had microscopically broken the prostate wall. It was suggested that I take 6 weeks of radiation … Is this normal?
To get my life insurance policy my readings have to be 0.2 or better. This is so important to my family.
Thanks
Arthur replied as follows to this question:
Dear Wayne:
Arthur thinks that, first and foremost, you are going to be around for many years yet unless you have problems other than prostate cancer!
You appear to have what is known as a “positive surgical margin” in which a tiny (microscopic) amount of cancer has been left behind after the surgery. This is not unusual. However, Arthur thinks you (and he) would need a lot more information before deciding exactly what to do. So here is what Arthur suggests:
You need to get the following information together: (1) your age; (2) your PSA data before your surgery; (3) your Gleason score data before and after your surgery; (4) your pre-surgical biopsy data (numbers of biopsy cores; number of biopsy cores positive; percentage of cores positive) (5) your pre-surgical cancer stage (e.g., T1c); and (6) your post-surgical pathology report (which your surgeon will give you if you ask for it).
Once you have collected all this information, Arthur suggests you go to The “New” Prostate Cancer InfoLink Social Network, join the network, and post all of your available information under the heading “About Me” in your personal profile. You will then find that lots of experienced patients — and possibly some doctors too — will get back to you with their comments and suggestions.
Radiation therapy is just one of a number of things that you can do to prevent progression of your prostate cancer, but it is possible that you don’t need to do anything and that your PSA will continue to fall. You do not need to rush into radiation on Monday. Arthur thinks that the most important thing for you to do is to get a second opinion from another highly experienced prostate cancer specialist before you do anything else. Who you may want to see is likely to depend on where you live, but many specialists will be able to offer a telephone consultation if they are provided with all of the relevant information.
Hello Arthur,
I am so glad you are still around. I still have my crusade battle With the multiple doctors. The rad doc’s nurse called me last Friday and said that the rad doc conversed with the god uro doc and THEY decided that I should end ADT3. This occurred in the morning. I accompanied a friend to my clinic to get him an appointment with an onc doc and ran in to my god uro doc’s nurse who said that the two doctors never spoke and I am still on for a shot of degarelix this Monday (tomorrow).
Now I know that you are going to suggest that it is my body. As much as I need to get off hormone therapy after 1 year and try and find some ++ QOL, I know that my god uro doc is right and I need to stay on 2 more years. People 76 years old should not have to climb mountains, where are the green valleys where we can lay down to rest. So I guess I shall continue on with my daily training in preparation for the Greeley Senior Games where I am running in the 200 m and the 100 m track events. I guess when I win these races I can lie down in the green valleys?. Did I just answer my own question Arthur?
Arthur had this to say:
Dear George:
Well first of all Arthur agrees. Yes, it is your body! And continuation of your training for the Greeley Games seems like a good idea. Exercise is always good for the body and the mind — selective mountain climbing included, even for 76-year-olds if they are up for it.
With respect to your doctors and their communication issues, Arthur cannot help you any more than he has already. That one is between you, them, and the assorted egos (unless and until you decide to get a divorce!). Arthur has no reason to believe that degarelix isn’t a good drug, but he continues to be concerned that the combination of an LHRH agonist and an LHRH antagonist is at best an odd idea. Arthur just hopes all goes well for you.
Dear Arthur,
Thank you so much for your reply. Today I drank the Kool Aid, and got my double subcutaneous shot of degarelix, and the god uro doc said I should leave in the Vantas Implant. I wonder if I am a Phase I clinical trial of one.
The nurse informed me that if I die from the shot they will not be giving anybody else one. So … I have made myself count. You the best man!
George
Arthur responded as follows:
Dear George:
Arthur thinks it most gracious of your doctor and his nurse to inform you that they won’t make a really bad mistake twice based on their experiment with you … even if the nurse did (presumably) have her tongue firmly in her cheek! “May the hormones be with you!”
May as well give you the “rest of the story” Arthur.
On the evening of the first day of my double degarelix shot in my stomach — well there is a little more to it than stomach — you see Arthur — when I turned 60 years, I sort of had some whales tattooed on my stomach — so the twin shots were placed in the two baby whales and the large humpback was reserved for my insulin shots … makes sense if you think about it … well at 10:30 p.m. I started becoming very, very sick … throwing up, super hot flashes, cold sweats, shaking, and the two whales started turning bright pink and became very warm! At 6:00 am in the morning, I became very worried, so I headed for the hospital emergency room and checked in at 8:00 am and, after several doctors checked me over, including a psycho doc, and lots of IVs, I was discharged at 8:00 p.m, feeling a lot better. Saw the god uro doc today and he said “Hummmm … looks like a reaction.” Tonight I still have two pink whales. End of this story. Should I write a book Arthur?
Arthur is puzzled, see below:
Dear George:
So Arthur isn’t sure what to make of this, but he has a number of comments/questions, as follows:
1. Did the uro god doc make any comment about what he thought he might need to do before giving you another shot of degarelix?
2. Did you get any impression that there might have been a correlation between the timing of your degarelix injections (on Monday morning) into the baby whales, the timing of any subsequent insulin injection(s) into the adult whale (later, on Monday afternoon or evening), and the onset of what does indeed sound like some form of allergic reaction on the Monday night?
3. Was the psych doc able to reassure the baby whales that this was not their fault?
4. Is there any indication that the whales are beginning to return to their original Humpback colorations?
Arthur is aware that subsequent dosing with degarelix will be only one injection of 80 mg as opposed to the two injections totaling 240 mg that you received on Monday, so this reaction may not happen again, but Arthur is concerned that this reaction may in some way be related to the fact that: (a) you already have the Vantas implant; (b) you are also taking insulin (although Arthur has no idea who much or how often); and (c) the loading dose of degarelix is a high dose. Arthur also checked the prescribing information for degarelix and saw no sign of this adverse event reported in the “Adverse Events” section. If you want to report this adverse event, you can do so by calling the US Food and Drug Administration at 1-800 FDA 1088 or visiting http://www.fda.gov/medwatch.
Question #1. Answer: The uro god doc mumbled a lot of words to his NP and said to me that he didn’t think the 80 mg shot would cause this much reaction. I did leave a message for the local rep for degarelix who said she was sorry about my being sick.
Question#2: My endo doc (the best of the best) a real Gold Standard Physician, despite my ADT3, has got my A1C, lipids, etc right on the mark. I take Lantus 30 units at night and use a Humalog, KwickPen before each meal every day. Shots go into mama whale every day. The 240 mg into the baby whales, within 1 hour were producing a bad stinging reaction that continued to get worse until suddenly I felt the full effect of something like a poison spreading all over my body. Now, The May 08, 4 month LUPRON shot produced the same reaction only it lasted for several days at a time and was off and on for 6 months. The Vantus Implant (last October) was very mellow and liveable. The Feb 09, 1-month Lupron shot was devastating, the 1-month degarelix had a bad initial reaction, but has now pretty much worn off. I believe that Arthur’s initial hypothesis about the two types, really three, GnRH reacting with each other is the culprit.
Question #3: As for the baby whales, of course they are pissed, wouldn’t you be. They stopped talking to me. Say, you know what, it was at this point when I told the psych doc that they stopped talking to me that he got very interested. “You mean you talk to whales?” Not anymore, I said, since they got the shot. Also at this point a real New York, Long Island psychiatrist was called into my room (named “Sidney” of course). He asked me some questions and when he found out I was a lacrosse player and he played in high school as a defense player and I immediately told him how much I hated defense players, he released me and said I was not crazy, only a lacrosse player.
Question #4. Just checked the whales in the mirror and they are now livid RED. Getting worse!
Final Comment: Don’t ever tell a psych doc that you talk to whales, they have no sense of humor. And don’t ever expect a psych doc to know a damn thing about men under the influence of hormone therapy. They had never heard of it or AD syndromone. “Of course I am depressed, I’ve got no testosterone!”
Arthur says:
Dear George:
Arthur thinks you had some sort of allergic reaction. Maybe everything’s OK … but if those baby whales start to hurt or “burn” again … get thee back to the ER pronto! And when you get your next shot of degarelix, Arthur suggests that you do NOT get it into either of the baby whales. Try a different spot.
How about the turtle?
Arthur replied as follows:
Arthur says don’t push your luck George! Pink turtles are an environmental nightmare waiting to happen!
Well, lets see? That leaves the Taeping, I don’t have an Ariel …., lighthouse, … gulls, rainbow, … porpoises, orcas, waterfall, Kika Kapulauhau, Moorish idol, …I don’t know where? Ahaa, I know! Papa Humpback. Thanks Arthur
Dear Arthur,
Regarding my previous question on partial urinary blockage. I read some place (but could not recall where and could not retrieve the site) that use of vitamins C and E would help in relaxing and allow urine to flow more freely. Did you come across any thing like this? Please check you knowledge banks.
Thank you, Yoshiro Yano
Arthur replied as follows:
Dear Yoshiro:
Arthur is sorry but he is not aware of any such data — which certainly doesn’t mean they don’t exist. Arthur carried out a couple of quick searches on PubMed (www.pubmed.com), but these did not identify any publications that appeared to be related to vitamins and their effects on partial urinary blockage.
Thank you Arthur. Maybe someone out there who reads this may have some input. Thanks anyway for your prompt reply and time. Aloha from Hawaii, Yoshiro.
Hi Arthur,
My husband is 71 and his PSA has jumped from 4.0 to 6.3 during the past 5 months. … Should I be worried? He has an appointment with the urologist at the VA on June 2. He has said that he is against surgery and he is hesitant to even get a biopsy if that is what the urologist says he needs. Just worried and was wondering what to expect. Thank you in advance for your help.
Arthur responded as follows:
Dear Worried Wife:
Arthur entirely understands and sympathizes with your concerns. Many men of your husband’s age have a rising PSA. This is not necessarily because they have prostate cancer. It is a common part of the aging process. What is more, even if it is because of prostate cancer, it may well not be the sort of prostate cancer that will ever cause clinically significant problems. So … The most important thing thing for your husband to do first is to have the visit with the urologist, make careful notes, and then come home and talk with you about whatever the urologist has to say. Arthur actually thinks it might be even better if you were able to go with your husband to see the urologist because this is very definitely a situation in which “two sets of ears are better than one.” However, only you and your husband can decide whether that would work for you. (Most urologists are actually more than happy to have a spouse attend that sort of discussion.)
Arthur says that if the urologist recommends a biopsy, you should make sure you are very specific about understanding why, and don’t let him do it then and there (which would be highly unlikely anyway). You need time to think about this. There are few “rights and wrongs” in this situation. The important thing is for you and your husband to understand your options and to make good decisions together.
Once you have met with the urologist, you can come back to Ask Arthur if you have more questions. There is certainly no reason for your husband to be worrying about the need for surgery at this point in time — especially if his only problem is the rising PSA and he has no other problems that might be associated with the rise in the PSA level.
Dear Arthur: Does anyone know how many deaths per year are caused by prostate cancer in men that have not been treated vs. the men that have been treated.
Arthur responded as follows:
Dear Reabon: First, Arthur very sincerely hopes that no one is dying of prostate cancer in America today without getting treated at all. That would be a very painful form of death!
Arthur suspects that what you mean by your question is: “How many men die from prostate cancer after they have been diagnosed with and treated for localized disease which still progresses, and how many men die after a diagnosis of truly metastatic disease?” That question Arthur thinks he can answer.
The American Cancer Association says that there will be about 27,400 prostate cancer deaths in America this year. And most of the men who die of prostate cancer this year are likely to have been diagnosed between 10 and 20 years ago. It’s been a while since Arthur looked at the SEER data to check, but he doubts if it has changed much. According to that data, 10 years ago, about 80% of men in America diagnosed with prostate cancer were diagnosed with early stage disease and less than 5% were diagnosed with metastatic disease. The other 15 percent either had some form of non-metastatic advanced disease or we didn’t know their stage at diagnosis. So, of those 27,400 men who will die of prostate cancer in America this year, about 80% or 21,900 will originally have been diagnosed with localized disease and less than 5% or maybe about 1,300 will have been diagnosed with metastatic disease.
Dear Arthur:
I finally had the Vantas Implant dug out by the uro onc doc. Quite a mining expedition. So now I am on pure
degarelix (inserted into the sting ray last week). By the way, to the many readers that have been asking about the two baby whales, they are doing fine and once again speaking to me. I have posted their picture on the other site for all to see under the “photos” section.
The question I submit today is that my uro onc doc stated that if the pure degarelix does not lower my testosterone below the new castrate level of 20, my only option is an orchiectomy. Are they really still doing these in the modern day world? Advise please.
Arthur replied as follows:
Dear George:
Arthur is aware that it can be a lot harder to take an implant out than it is to put them in. He has often wondered just how often they do have to be taken out for one reason or another.
With respect to the potential orchiectomy, Arthur say he has a feeling that for some reason your uro onc is “yanking your chain.” Having said that, however, orchiectomy is still widely used in this wonderful modern world. In America, for those who have no insurance coverage and cannot afford to pay for drugs like LHRH agonists, it may be the only alternative available. In much of the developing world, it is the only opportunity.
Having said that, Arthur should note that a modern subcapsular orchiectomy is not exactly the same operation as carried out in the 15th Century to provide an appropriate team of eunuchs to “man” the hareem.
In May 2008 I had a prostatectomy. Every 3 months, I had a follow-up PSA, which all were “non-detectable” (less than 0.1). Last week I got test results from a different doctor that was 0.04. Since I don’t know what my earlier PSAs would have been at the second doctor’s laboratory, how often should I get PSA tests now.
—–
Arthur responded as follows:
Dear Russ:
Arthur says that your most recent PSA test used a method known as an “ultrasensitive” PSA test. Your earlier tests used standard PSA measurements. However, there is nothing for you to worry about. You should continue to have PSAs drawn every 3 months until your doctor tells you that he thinks that once every 6 months or perhaps once a year will be enough.
The advantage of the ultrasensitive test is that if your PSA does start to rise, you will know a little sooner. The disadvantage is that it may show very small variations from test to test, and you shouldn’t get too worried about this if (for example) your next result using the ultrasensitive test is 0.05 ng/ml, because it is perfectly possible that the one after would be 0.03.
Arthur thinks that so long as long as your PSA level is below 0.1 ng/ml, you should be in good shape.