I came home last Thursday and my husband told me that he had prostate cancer. I knew that he was having problems and having tests done on his prostate, but I never dreamed in a million years he would have cancer because cancer doesn't run in his family. Needless to say I was shocked.
He has an appointment to see a doctor next Thursday for consultation about what how to treat this cancer. Im going with him and I am going to try to be as supportive as I can, but Im really scared. I had a brother that avoided his symptoms and he died from prostate cancer.
The good news is the doctor told him they caught it early, but I feel so bad for him because he's all ready had heart surgeries, hernia surgeries, gallbladder surgery, anuyrism surgery and other surgeries and I am so scared of this thing and of losing him. I will be strong though and help him thru this as best that I can.
It appears there are different ways to treat this surgery, but it seems to me if I had a tumor in my body I would want it out period. Ultimately it will be his decision. Im going to pray hard for him and I know God will save him and not let him die. God bless all of you that are facing this same nightmare and I pray all of you will come thru just fine.
Any suggestions that you might be able to give me would be appreciated so I can tell my husband. I wish he would come here and talk himself, but he doesn't go to any message boards. Thank you very much ...Barbara
the good news is that there are any number of ways to treat this and you'll hear about 'em all in the coming weeks. you'll at first be overwhelmed by all the info, but eventually you'll talk to a doctor that you both will have confidence in. my experience was that the most imiportant thing was to keep looking around, learning more and getting more second opinions and consultations until i was completely comfortable with the path we were taking. you're no doubt reading web pages and books right now. soon you'll see lots of advice here, but i hope you're wary about the amateur advice you get -- all well meaning, of course, but the only people in your situation are you and your husband [and the doctors you talk to face to face.] good luck and keep posting here. everyone here has taken just one path down this road exactly once. the rest is hearsay.
Sorry to hear about your husband's diagnosis. As you say, the good news is that they caught it early, so successful treatment is possible, if not likely.
If you simply peruse the threads on this board you will find a tremendous amount of information on treatments, websites, and books that are available to help make your decision. Hopefully, it won't be too confusing.
In order for us to understand your husband's situation and offer opinions on treatment, could you give us details such as his age, PSA, his biopsy results, Gleason score, etc?
Any suggestions that you might be able to give me would be appreciated so I can tell my husband. I wish he would come here and talk himself, but he doesn't go to any message boards. Thank you very much ...Barbara
Hello Barbara;
You've come to the right place for support. In spite of the fact that we are not medical professionals, we were all told, "You've got prostate cancer." We all had to make some hard decisions and jump through some difficult hoops. If your husband isn't a message board geek, then you need to do that job for him. I'm certainly happy that his cancer was caught early and that he has some time to consider the many treatments. Each treatment is good. There are no bad treatments as long as the specific treatment is matched to his age, his staging numbers, his temperament and his attitude. My suggestion at this point is to learn as much as you can about his staging numbers. Initially this would include his biopsy results, his last several PSA results, if he had a bone scan or a CT scan to indicate that it's still localized, stuff like that. His urologist can suggest some reading material about his condition and about treatments. Initially, I can suggest that you go to your local book store and buy Dr. Peter Scardino's Prostate Book: The Complete Guide to Overcoming Prostate Cancer, Prostatitis and BPH (Hardcover). This will get you started on your journey to beat this thing. Never hesitate to ask questions here on this anonymous forum. The only dumb questions are the questions that you didn't ask. There's plenty of "experience" to be shared here. Many stories! Many tips and tricks to coping with your journey. We are ready to help you.
Any suggestions that you might be able to give me would be appreciated so I can tell my husband. I wish he would come here and talk himself, but he doesn't go to any message boards. Thank you very much ...Barbara
It would be good to get the age and staging info as already suggested, as that will have a lot of bearing re: advice from all of us that have gone through it.
While we're obviously not professionals, we do have experience and have read a lot and spoken to many prior to getting our own treatment (which as you'll read varies quite a bit).
Doctors are helpful, but for prostate cancer there are many available treatments, each with particular advantages and disadvantages. Depending on what your doctor(s) specialize in, that's how you're likely to be directed. Fortunately, you can challenge what they say and come to your own personal conclusions. I'd add the recent book by Patrick Walsh (Guide to Surviving Prostate Cancer) and another on an alternative form of treatment, proton beam therapy (which is what I did last year)- Robert Marckini's book entitled You Can Beat Prostate Cancer. Readers' comments on the various books on Amazon's website can provide some input too.
Good luck as you begin the process. Try to keep an open mind on the various treatments. I too started out by thinking surgery, to get it out, was
the way to go. But I changed my mind and am happy with my decision...
While we're obviously not professionals, we do have experience and have read a lot and spoken to many prior to getting our own treatment (which as you'll read varies quite a bit).
I appreciate you repeating that point daff. It's sort of a pet peeve of mine to KEEP IT REAL!
I'd add the recent book by Patrick Walsh (Guide to Surviving Prostate Cancer) and another on an alternative form of treatment, proton beam therapy (which is what I did last year)- Robert Marckini's book entitled You Can Beat Prostate Cancer. Readers' comments on the various books on Amazon's website can provide some input too.
Barbara,
daff is our "pioneer" with regard to proton beam therapy. He's captured my attention with his posts about this relatively new therapy. Proton Beam Therapy is certainly something to consider in your quest for a treatment.
All the advice you've received on these boards so far is good and correct. I'd add that the single most important decision you'll make after what treatment you choose will be the specialist you select to perform it and the institution where it is performed. There are wide differences in skill and experience levels among the many surgeons and radiation/oncologists specialising in prostate cancer treatment and consequently wide differences in quality of outputs and side effects of treatment. The best results are usually obtained by the best surgeonsand radiologist/oncologists at the best cancer centers who treat the greatest number of prostate cancer cases. Avoid the local practitioners in the local hospitals as they can't afford to sub-specialise in only a single procedure and are forced to treat all urological conditions in general practices. Therefore their experience in treating prostate cancer is more limited than the top specialists who devote their entire practice to only treating P.C.
Good Luck
Thank you so much for all the input and information that you all have given me. To be honest I do not have his biopsy information at the present time. All I know is that he is in the early stages of prostate cancer, but when we go this Thursday to talk with his doctor I will know more. Oh my hubby is 59 years old. I will read the boards and have all ready looked online and will try and find that book you mentioned. I will post at a later time when I know more about my husbands condition. Oh he told me that his prostate was enlarging rapidly, but I don't know what the means exactly. Will keep you updated and thanks again...Barbara
I've already read your original post and now seven responses. You've had a lot of key advice, so I won't cover that ground again, but I would like to give you some additional thoughts.
Quote:
Originally Posted by wv_lady_us
I came home last Thursday and my husband told me that he had prostate cancer. ... Needless to say I was shocked.
Does your statement ever bring back memories! At age 56 I was returning from an allergy shot after having gotten a routine physical a few days before where the doctor pronounced me fine and told me he didn't think I needed a PSA test. I insisted. My PSA was 113.6, and the report had a scrawled note at the bottom. Get appointment ASAP! Yes, stunned and shocked, as was my wife when I opened the garage door and told her I had some bad news.
He has an appointment to see a doctor next Thursday for consultation about what how to treat this cancer. Im going with him and I am going to try to be as supportive as I can, but Im really scared. I had a brother that avoided his symptoms and he died from prostate cancer.
You said the critical words: "avoided his symptoms." That's a formula for dying from prostate cancer in many cases as there are often no symptoms until the cancer is well advanced. If your husband's cancer was truly caught early, his chances for survival are excellent, and you may be surprised at the quality of life you and your husband will enjoy. For the first weeks after diagnosis, my wife and I wondered if we would ever have a joyful day again. Even though my case was clearly challenging, we found joyful days much sooner than we had anticipated.
The good news is the doctor told him they caught it early, but I feel so bad for him because he's all ready had heart surgeries, hernia surgeries, gallbladder surgery, anuyrism surgery and other surgeries and I am so scared of this thing and of losing him. ...
You bring up a critical point that has not yet been addressed in responses, though I hope that will change. When there are such significant other health conditions, prostate cancer may be the least of your husband's worries, and that overall health context should have a huge bearing on the approach to the cancer. Heart and aneurism trouble are major concerns, usually more so than prostate cancer. That's especially true in men around 70 and older. How old is your husband? For example, I read again and again that doctors recommend against surgery for men at or near 70 who are not in good health. Prostate cancer surgery and its aftermath are a significant strain on the system, and blood clots are common. While clots do no harm at all for most patients because they are usually small, they are often apparently a real danger for older men with heart and cardiovascular trouble. As daff and able5 have pointed out, we are not doctors, so please bear that in mind too. But some of these points are very well established principles that you will discover yourself if you read.
If the cancer is fairly mild, your husband may not need to do anything, though learning about tactics involving nutrition, exercise (to the extent he can do it) and stress reduction could help. So might low key medications like statin drugs (perhaps he's already on one), finasteride or Avodart. All of those are prescription drugs, and you and your husband would need to learn about them and discuss them with a good doctor. If the cancer was caught early but is more of a concern, hormonal blockade by drugs might be all that is needed, though there are some issues when a man has heart and other cariovascular conditions. Beyond surgery, radiation and cryosurgery (freezing) are often fairly low-intrusive options that older men, or men with other significant health conditions, may tolerate better. Bottom line: there are options.
It appears there are different ways to treat this surgery, but it seems to me if I had a tumor in my body I would want it out period. Ultimately it will be his decision.
I think most of us want to just get it out, especially at the beginning. However, we need to aim before we shoot, or we are liable to miss. Keep this in mind: since prostate cancer is a slow growing disease for the vast majority of us, your husband has probably had it for years. In fact, for men over 50, prostate cancer is NORMAL. In other words, more men have it than do not, though most do not know it - I'm obviously not saying it's a good thing. While about one out of six men will be diagnosed with prostate cancer in their lifetimes, only about one in thirty or so will die of it. If your husband's case is truly mild (such as stage T2a, Gleason Scoreof 6 or lower with no grade 4 or 5 cancer (two grades are combined to make the score), PSA of 10 or lower, no increase of PSA in the year before diagnosis of more than 2, only one core positive or only up to about 3 if many cores were taken, no high percentage of a core positive), then "active surveillance" could be an ideal approach for him. Right now, it is too early to say. Make sure your husband's doctor gives you all this information that he has.
Thank you so much for all the input and information that you all have given me. To be honest I do not have his biopsy information at the present time. All I know is that he is in the early stages of prostate cancer, but when we go this Thursday to talk with his doctor I will know more. Oh my hubby is 59 years old. I will read the boards and have all ready looked online and will try and find that book you mentioned. I will post at a later time when I know more about my husbands condition. Oh he told me that his prostate was enlarging rapidly, but I don't know what the means exactly. Will keep you updated and thanks again...Barbara
There are many of us here that will be glad to try to be helpful. It might be easier to keep track of what's discussed on Thursday if you take a notebook- and come prepared with some of your own questions, since you might not remember exactly what to ask. I always had a list of questions, so I could make sure we'd cover enough things.
It will be important to learn his Gleason score and PSA. These will help in reviewing treatment options, which you know from this board, are not just confined to surgery or seeds. Also, the size of his prostate can be important too. Even if you don't know how these things will matter right now, it will be good for you to get this information so when you later read about, or have people tell you about,
the various alternative treatments, you can factor all this information in.
Feel free to post again after Thursday's meeting. We'll try to help put things in perspective if you so desire.
You and I were posting about the same time, and I didn't see this update. Your husband's younger age might open the door to surgery, but the potential cardio complications should be examined very carefully. I think it would make sense to consult with the cardio/internal medicine doctors in thinking about a therapy for prostate cancer. Also, in rereading my earlier post, I did not mean that hormonal blockade was ruled out by your husband's conditions, but it, like surgery, would definitely need some extra examination.
If the books you already have and are getting do not have good forms for recording information, an excellent book with a fine set of forms is "A Primer on Prostate Cancer -- The Empowered Patient's Guide," Strum and Pogliano, rev. ed. 2005. It also has great color illustrations and photos. One of its strengths is providing an overview of information to orient new patients.
Sometimes prostate cancer is a sign that the body is under stress and vulnerable to other diseases. Your husband's other conditions emphasize that possibility, because research indicates that some of the causes for all these conditions are similar. Some of us are trying to tip the balance back in our favor by using lifestyle tactics to support our chosen therapies (not as a substitute). This involves nutrition, certain supplements, diet, exercise, and stress reduction where possible. There is a lot of formal, medical research supporting these tactics, but unfortunately none of it is absolutely convincing as yet. You and your husband could try to find out if his prostate cancer doctor is knowledgeable about these approaches. Many doctors are not knowledgeable, but you might be fortunate. My first doctor was totally uninterested, but a urologist I consulted later was very helpful.
Thank you for all the great input that you gave me. Well my husband did give me a score, but I forgot. Perhaps it was in the 30s maybe? Im sorry to not be able to give exact numbers. My hubby told me he had been having prostate problems for years, but his doctor noticed something in his blood work in December and recommended he go for tests and they took 12 biopsy's I believe and one showed the cancer. My husband talked with a cousin who had prostate cancer several years ago and he told my husband what a rough surgery that it was and he got infections and it took months and months for him to fully recover. With all my husbands other health problems I just wonder if he could survive such a surgery. Rog went online and was reading about "Robotic" surgery and they have this surgery at one Hospital in Huntington, WV and my husband said its sounds better than the traditional type surgeries since you lose less blood and there are less complications after the surgery and less time in the hospital. I hope if he does have to have surgery that he could have this type if our insurance company will pay. Thats the clincher. I will take a notebook and take notes and ask questions tomorrow. Im really hoping he doesn't have to have surgery, but we will see. You all are the best and I appreciate every one of you that has tried to help me understand this type cancer. I have no books on prostate cancer yet, but will try to find these that are mentioned. All I know is its going to be a long long struggle with this cancer and Im so stressed Im getting physical symptoms in my stomach. My daughter is getting married in July and I have financial obligations to help with the wedding reception and that has stressed me out also. Well thanks for listening and I will keep you updated and will write down what the doctor says and have a better idea of what my husband is facing with this cancer...many thanks...Barbara
Barbara;
If your experience was like mine, you'll wonder why you got so stressed. Your post reminds me of another wife on this forum that went from "PANIC" to "PhD" in a matter of months. When her hubby was diagnosed she got on this forum and went into the "panic mode" and dumped her entire load of emotions on us. As time went on she got more and more confidence and courage as we helped her through her journey step-by-step. Her hubby went on to have a very successful surgery and he recovered just fine. They chose a very prominent prostate cancer center and got the best care from some of the best doctors and urology team in the country. All this happened in less than a year. Just a short while ago she got stopped posting. For some reason she got upset with all of us who helped her along the way and decided she had enough of "prostates" and wanted to move on and live her life without this forum. That was sad. She had a lot to offer. She had a great success story and would have added value to this forum and help for the newbies just beginning their PC journey. She no longer participates because she doesn't need us any longer. Personally, I miss her valuable input. I wish that she would come back and rejoin our team of PC veterans. Maybe that will happen some day. I hope, a year from now, that you have a similar success story to share about your prostate cancer experience and you will stay with us to help the newbies that come after you and give them the courage they will need to face this terrible disease. The members here on this forum care passionately about your situation. We want to try to help you relax and get comfortable (as best you can) with the road you are about to travel. We've all been down that same road, in one way or another, so we do have valuable input. Our experiences may not be exactly what you experience, but they will be very similar.
.....All I know is its going to be a long long struggle with this cancer....
Barbara-
I'll second what Able had to say. This is far far from a hopeless struggle. And your husband doesn't HAVE to have surgery, robotic or otherwise. Repeating what I and others have said before, there are options- and many many of them are good. In some people's opinion (mine) better than surgery. Your urologist will likely point towards surgery, giving a few less than wholehearted options (unless he's different from a large number of urologists).
Surgery is not necessarily the best choice, although it certainly is the choice many make. I think once you've read more about this, your stress level will decrease. I had proton beam radiation, with little to no discomfort, no incontinence, no pain. It did require me to be away from home for two months, since the short out-patient treatments took place 5 days a week for about 8 weeks. Insurance did pay for this, although I was responsible for paying my living expenses in Jacksonville.
Besides protons, there are other very targeted forms of radiation that have gained more use over the years. It's important to make sure that the facility you go to has the latest generation of equipment for whatever it is that you do. This isn't a time when convenience should be the highest thing on the list.
(One of your questions on the subject of robotic surgery should be how many procedures of this kind has your recommended doctor done. I'd say a minimum of 300 is ok, but if I were doing it, I'd want a top surgeon who has
done over 1,000.)
My guess is that once you learn more and take charge of what's happening in as active a way as you can, you'll see that you can beat this. Hope the meeting goes well. We'll be thinking of you. Keep on writing too.
I hope the earlier support you have had today has been reassuring.
I'll put some comments in green. Jim
Quote:
Originally Posted by wv_lady_us
... My husband talked with a cousin who had prostate cancer several years ago and he told my husband what a rough surgery that it was and he got infections and it took months and months for him to fully recover.
Many of us get a lot of our information about prostate cancer from talking to a buddy or two who was treated for it. That's often helpful, but often it isn't because the buddy's circumstances were not similar or he had the bad luck to have a bad experience. I suspect that's what happened with your husband's cousin. The part about months and months to fully recover from surgery is typical for conventional open surgery though, and even robotic surgery typically has a recovery period. Some patients do extremely well with robotic surgery and have very short recovery periods, according to what several men have said at our support group, but one man had very bothersome complications from robotic surgery that probably was not well done. Probably the least burden on the patient is from radioactive seeds or cryo therapy. Of course, "active surveillance", which defers therapy but watches carefully to see if the cancer is agressive enough to deserve therapy, has a very low burden on the patient. That's provided he and his wife are fairly comfortable with "living with cancer." "Living with cancer" without trying to remove it is not a cake walk, but for many of us (including me) it is not that hard psychologically to live very well while knowing you have cancer. However, some of us just can't stand the idea. I've got a hunch that the two of you will be much more able to take cancer in stride considering what you have already been through with the other major health issues.
With all my husbands other health problems I just wonder if he could survive such a surgery.
The odds of literally surviving the surgical operation are probably very high, even with your husband's other conditions. But there is likely to be at least some delayed impact on those conditions. As I emphasized in an earlier post, the impact of surgery in view of your husband's other major health conditions is a big deal and deserves very careful thought. I suggest you write out a statement highlighting those other conditions and couple it with a question how each therapy option (including "active surveillance") might impact those other conditions, then give it to the doctor at the start when you see him tomorrow. Don't leave until he has answered the questions.
As a layman without any enrolled medical education, but as someone who has listened and read a lot about this disease in the past eight years, my strong impression is that conventional surgery would significantly raise the risk of potentially serious trouble, particularly with blood clots, for a patient with a previous history of serious cardio disease. My impression is also that robotic surgery by an expert would decrease but not eliminate this risk. I suspect that radiation or cryo therapy (freezing the prostate) would be much less risky considering the other conditions, but that extra attention should certainly be given to active surveillance in your husband's particular case.
By the way, active surveillance is getting a great deal of attention and respect in medical circles since just 2002, including programs at several of America's (and the world's) leading prostate cancer surgery centers. A key part of the program is careful selection of patient's who should do well without any therapy. Another key part of the program is careful monitoring to make sure that any aggressive cancer that turns up is caught early enough to use a major therapy effectively.
Rog went online
Good for him!!! That's a vital step in becoming an empowered patient.
and was reading about "Robotic" surgery and they have this surgery at one Hospital in Huntington, WV and my husband said its sounds better than the traditional type surgeries since you lose less blood and there are less complications after the surgery and less time in the hospital....Barbara
My strong impression is that that is true, provided the doctor has adequate experience and skill.
Be sure that you and your husband find out your husband's exact Gleason Score (like, 3+3 = 6 -- the Gleason Score is made up of two "grades" and a total, with the first grade being assigned to the most prominent cancer in the sample and the second grade to the second most prominent. Ideally, any grade 4 or grade 5 cancer (the high risk grades) should be reported as a third grade, even if there is just a little. If you can, find out what percentage of the biopsy core was cancer, and what the percentage of each grade was; some pathologists record this, but many do not. Ask if the pathologist is a general pathologist or if he makes a specialty of examining prostate cancer biopsy samples. Also, it's wise to confirm the number of cores taken (you said you thought 12) and how many were positive for cancer (you said you thought 1); one core of twelve would be one clue that the disease is low in risk. Also, you need to know the "stage" of the cancer, such as T1c, T2a, T2b, T2c, T3a, T3b, etc. You should also have handy the latest and previous PSA results by date. Your husband is entitled to copies of written lab reports including any reports of scans, and he should ask for them. In fact, you could ask if the doctor has made written notes of the case and whether you could have a copy. You may not appreciate or need this information now, but it is important if you consult with other doctors, which is par for the course for prostate cancer patients. Most doctors are happy to give this information to their patients. If you forget and leave without it, feel free to call back and get it from his staff.
God bless you, Barbara and your husband...from a WV survivor. I'm in Huntington and am 51 years old. I was diagnosed in spring 2005 at age 48 (4.6 PSA, 2 positive biopsy cores). I had surgery at Cabell-Huntington Hospital in July 2005 - done by Dr. Louis Molina before they got the robot. Dr. Molina is the one who recruited Dr. James Jensen to come to Huntington. Dr. Jensen did about 300 robotic surgeries before coming here and has done 200+ more since arriving.
If you all and your local doctor decide on surgery CHH would be a great choice.
__________________
I'm not a doctor, just a guy who used to have a cancerous prostate....but I got over it...
I am sorry about your husband having cancer. My first husband had bladder cancer many years ago so I know what you are going through. Some advice to share with you is to be there for him and don't forget to take care of you.
I hope you'll stay in touch. My prayers are with you and your husband.
Barbara;
Your post reminds me of another wife on this forum that went from "PANIC" to "PhD" in a matter of months. . . . Just a short while ago she got stopped posting. . . . That was sad. She had a lot to offer. She had a great success story and would have added value to this forum and help for the newbies just beginning their PC journey. She no longer participates because she doesn't need us any longer. Personally, I miss her valuable input. I wish that she would come back and rejoin our team of PC veterans. Maybe that will happen some day.
Hear! Hear! I was really disappointed when she dropped out before I had my treatment. If you are still monitoring us, please come back.
Last edited by tumbleweed; 04-12-2008 at 10:49 PM.
God bless you, Barbara and your husband...from a WV survivor. I'm in Huntington and am 51 years old. I was diagnosed in spring 2005 at age 48 (4.6 PSA, 2 positive biopsy cores). I had surgery at Cabell-Huntington Hospital in July 2005 - done by Dr. Louis Molina before they got the robot. Dr. Molina is the one who recruited Dr. James Jensen to come to Huntington. Dr. Jensen did about 300 robotic surgeries before coming here and has done 200+ more since arriving.
If you all and your local doctor decide on surgery CHH would be a great choice.
Glad to hear you had good results- and that there are some viable robotic choices in your area now.
However, given the medical history and age of wv lady's husband, my layman's view is that surgery wouldn't be an appropriate choice for him.
It would be interesting to learn how their meeting went last week with his doctor- and I'm sure we'll hear when she's ready to post one day soon.
but unfortunately none of it is absolutely convincing as yet. You and your husband could try to find out if his prostate cancer doctor is knowledgeable about these approaches. Many doctors are not knowledgeable, but you might be fortunate. My first doctor was totally uninterested, but a urologist I consulted later was very helpful.
Re: my husband has prostate cancer.. 
