Husband was just diagnosed with Prostate Cancer. Went for annual physical PSA level was at 20 - family doctor sent him to Urologist who performed a DRE and really thought it was an infection. Put him on antibiotics for a month - did another blood test and PSA had climbed to 26. Urologist did a biopsy - and it is Cancer. He is scheduled for a bone scan this week. This is a total shock to us - as he's NEVER been sick - and we truly don't know where to begin - even what questions to ask.......anyone have any info or a website that we can go to get information? (Hubby just turned 60 this month - )
Last edited by pnoe; 10-27-2009 at 10:46 AM.
The following user gives a hug of support to pnoe: Pennybug (10-07-2011)
Hi sorry to hear about your husband. Mine has had cancer for 8 years, during this time I have read many books... the latest favorite is Prostate Cancer for Dummies. You can find much helpful information in this book. Thinking of you both...
Last edited by dixiedaisy; 10-27-2009 at 11:20 AM.
Reason: forgot a word in the title
Get a couple of books. One would be Dr. Strum's "A Primer on Prostate Cancer: The Empowered Patient's Guide". Strum is a leading medical oncologist who focuses exclusively on prostate cancer. Another book would be Dr. Patrick Walsh's "Guide to Surviving Prostate Cancer." (Walsh is a world famous prostate cancer surgeon, at Johns Hopkins).
If you read these two books, you will gain a huge amount of knowledge about this disease and the treatment options.
Treatment options depend on some facts regarding your husband's cancer, such as (1) the clinical stage; (2) psa score; (3) Gleason Score (this is a sort of measurement of how agressive the cancer is).
The Gleason Score is particularly important in making treatment decisions. Unfortunately, it turns out that many times the initial Gleason Score that comes back from your biopsy is wrong. The best way to minimize that problem is to have your biopsy slides re-read by an expert pathologist, such as Bostwick Labs or Jonathan Epstein at Hopkins. You should tell your husband's urologist that you want this done (it is easy and routine, and not very expensive). That way you will be most likely to get the right Gleason Score, and to be making treatment decisions based on accurate information.
Most likely, your husband will have more than one treatment alternative, so he will have to make a decision on what treatment to get. The most common options are surgery or radiation. (If you choose radiation, then there are various sub-options -- different types of radiation). There are other treatments too, including hormones treatments, HIFU (though not in the USA), cryosurgery, etc. So there will be some choices to make. Take your time, learn about the options, and make the best decision that you feel comfortable with.
Often, urologists will favor surgery, since that is what they do for a living. Radiation oncologists will often favor radiation, for the same reason. That does not mean they are being dishonest -- they just have confidence in the treatments that they administer. So, you will likely want to find a very good urologist and also a very good radiation oncologist, and talk with both of them about your options. You might also want to consult with a medical oncologist, to get a third view. That is a lot of consulting, of course, but it is worth doing in order to get the best advice you can, from different medical perspectives.
Fortunately for you, there are some very good docs in Chicago. Some people on this board have been treated in Chicago and can make recommendations. (One urlogist you might consider is Dr. Catalona at Northwestern). You really want to go to the best doctor you can for prostate cancer. It is very often a curable disease, but treatment outcomes depend on the quality of the doctor, so don't settle for someone who is adequate.
Ask your questions here. There are people who have a lot of knowledge (much more than I do), and are willing to help.
My husband is going through the same thing. He turned 60 this summer and was diagnosed with prostate cancer in October. After the biopsy they sent him for a bone scane and MRI. We then met with the urologist who gave us the diagnosis. It's important to find out his Gleason score and also his Tumor grade. These are key pieces of information and you should be able to call your urologist and get this information. I would also suggest sending the biopsy for a second opinion. This was recommended in most eveyrthing we read. We did this and it changed...unfortunately for the worse but you need to be sure you have an accurate biopsy reading. There are less than 10 places in the country known for this one of which is Hopkins so that's where we sent his biopsy slides for the second opinion.
Figuring out where to start can be overwhelming. We bought several books and I would encourage you to do this. One is the book by Dr. Walsh at Hopkins. One of the most important things is to educate yourselves because there are so many options and depending what doctor you see you can hear different things none of which are necessarily wrong. Just that there are so many different options based on each person's situation.
His urolgoist was referring him to surgeons, radiation oncologists, etc. for opinions but the issue was that none of them were linked to the others, i.e. it wasn't really a team working together but rather meetings with individual doctors to see what each would recommend.
Knowing that he had to see individual doctors I called the Cancer Center at Hopkins to get an appt. with their Radiation Oncology team. I also called the Brady clinic at Hopkins to get an appt. with a surgeon. These were completely separate groups even though they were all at the same hospital so we expected more of the same. i.e. individual meetings with individual opinions.
On Friday we went to Hopkins to have a meeting with what we thought was going to be their radiation oncology team. It turned out to be a multidiscplinary team that consisted of a surgeon (Dr. Partin who's actually the head of Urology at Hopkins and famous for developing the Partin tables), a Radiation Oncologist, a Medical Oncologist and the Pathologist. As a team they reviewed the case and came up with a collective opinion. In his case, the recommendation was unanimous that surgery is not an option and radiation and hormone therapy are the best approach. Though this was not great to hear we had the comfort that we were at the right place and getting an opinion that was collectively developed by the team of doctors working together to come up with a recommendation.
What was surprising to me was the fact that Hopkins doesn't really advertise this at all. They only do this for 5 patients a week on Fridays. If you could get in there I'd encourage you to do that or else find something comparable where you live or where you can easily travel. If you don't live close to Hopkins you don't necessarily have to have your treatment there but at least you got their opinion. If surgery was an option Hopkins is one of the best surgical teams in the country for prostate removal.
This took a tremendous amount of pressure off of us to try to find the right (i.e.best)doctors, schedule individual appointments, get the different opinions and try to make the right decision.
You're both in my prayers because I know what you're going through especially after you first find out. If there's anything I can do to help you please let me know. I feel like I'm only a month ahead of you but have learned a lot during this time.
I am so sorry to hear your news but you have found a great place to share and get information. I am 56, was diagnosed last June, and was operated on September 14th. Instead of repeating myself and the words of others you might want to read the posts below. I am sure you will hear from many of the people who responded to these previous posts.
You asked about books and when my wife and I were at one of our consult visits she asked if there were any books written for wives. The doctor recommended a book called “His prostate and me – saving your sex life” (or something like that). We did not read the book, but I hear from others that it is very helpful.
As I see you are from the Chicago area you should feel assured that there are many very good doctors and options to look into. I would say you are starting at the right place – asking a lot of questions. I would recommend that you talk to as many people as you can and ask as many questions as you can think of. Take someone with you to listen and to be your advocate. You often do not hear everything when you are under stress. When you are done with that step – ask more questions. I would also be careful of the Internet (odd saying that on this forum) as there are a lot of horror stories out there. I have found this forum to be a good place to share and get good honest (and open) opinions.
For me, my Urologist does not do this type of surgery so I never felt like I had to change doctors. However, others on this forum have expressed concern about changing Urologists. One thing I have found (from the research and on this forum) is that “experience” is one of the keys to a successful outcome. I guess this could be said about anything; however, I feel it is worth repeating.
I decided on robotic surgery after considering all the various options. All of my doctors, and consults, talked about the various options - Watching, Radiation, Hormone, etc and so I felt I had the full picture before making a decision. I never know if I should recommend doctors – but here are a couple of great options (for surgery) in Chicago. I spoke with Dr. Catalona (open) at Northwestern and Dr. Shalhav (robotic) at Univ. of Chicago. Both are experts at their craft and considered leaders in their field. I chose Robotic (U of C) for a lot of reasons – many of which have been written about on this forum. I really liked Dr. Shalhav’s approach – that the surgery is important for the cancer – but you really need to view this as a total life change … Diet, Exercise, etc.
I am sure you will have more questions for us as you progress. Best of luck
Thank you for the replys - keep them coming - I know that information is going to be the key for us to figure out what is will be the "correct" approach - the scary part is having so many choices and not knowing anything about any of it. The very word "cancer" is almost debilitating - and then adding the unknown to it all - can be very confusing. We're both starting to come out of the fog from Monday - I also realize that this is all going to take TIME - something I'm not very good at -
I'm already wondering why he's having a bone scan....(based on other threads - where people have had lymph nodes tested, MRI's etc. etc.) I realize the test is to see if the cancer has spread to bones - but what about other organs etc.? Why didn't the doctor give us the Gleanson scores when he called with the biopsy results? Is it because he is waiting until after the bone scan results to set up a meeting with us and give us all of the info at that time? When I think about how much we don't know - it's overwhelming - but I ultimately KNOW that TRUSTING he is at the right place for the care he is going to need is paramount.
Bone scan is pretty common (at least with a psa score over 10), just to check if it has spread to the bone. Usually, the scan does not find any evidence of spread to the bone, but its better to check. Why do they check bone and not other organs? Three reasons, as I understand it: (1) that is a common place for prostate cancer to spread, if it does spread; (2) if they find evidence of spread to the bone, that would suggest some different treatment choices; and (3) the scan is relatively easy and non-invasive. (You would not want to go biopysing various organs on the very remote chance that a cancer might have spread to one of them). In terms of scan for possible lymph node involvement, there is something called a "combidex scan" that reportedly works pretty well in detecting lymph node involvement, but it is considered investigational in the United States, and as best I know (I might be wrong) is available only in Nijmegen, Netherlands (Dr. Barentsz). Why didn't the urologist tell you the Gleason score when he called you? I have no idea -- maybe he thought it would not mean anything to you, and would prefer to explain it all to you in person. (Whatever Gleason Score he tells you, remember to ask him to send the slides to a pathologist with particular expertise in prostate cancer, such as Bostwick or Epstein, for re-reading).
I'm sorry that you've had to seek out this board, but I too would like to welcome you. A lot of people here have been "down the road" and are very open to sharing their experiences. After getting over the initial shock, as you read more (some good books recommended here already; I like the "Primer"), ask more, and learn more you will find that prostate cancer (PC) has a very low mortality rate, and generally lots of options to attack it.
I'm sorry I only have time for a brief note this morning, but I wanted to quickly make this comment. I believe in your first posting you mentioned that your husband had been getting getting regular PSA tests, but then just recently it shot up to 20 & 26. You also mentioned that cancer was confirmed via biopsy. With the regular testing he has had, I am imagining that it was unlikely that prior to these recent results he had very high results. This tells me that there might be a possibility of infection still present, because it would be rare and unusual for PSA to spike that rapidly through normal cell division. It is possible that the elevated PSA is due to a combination of infection plus the confirmed cancer...they can co-exist. I say this despite your mentioned recent anti-biotics...some prostate infections are very difficult to identify and correct.
Decisions on treating PC are dependent on a good understanding of the case characteristics. MINIMALLY, those basic characteristics consist of PSA, Gleason and DRE results. PSA doubling time (PSADT) & PSA velocity (using existing data) are other valuable metrics to examine to understand an aggressive PC, but I think it's important to rule-out infection-influenced PSA results first. At 20+, that is PSA that would be considered outside of "low-risk", but it may still be influenced by a difficult-to-cure infection. I would encourage you to ask your doc about this possibility.
Glad to see you are reading and writing more ... and I hope you find this information helpful.
Since your doctor did not give you the Gleason score a couple of tid-bits about the score. It is always made up of two numbers. Mine was 3+3 and the doctor said that was great as they never see anything lower. When I started reading I found out the gleason can be less than 3+3 .. however after talking to a pathologist he told me they rarely see anything less than that as you only biopsy when you beleive there is CA and therefore if they find it ... it will be something in that range.
In addition to the Gleason score find out how many samples they took. They typically biopsy three parts - on each side. In my case they took 12 samples - two from each site. It is a very random thing as they are shooting needle biopsies sort of in a general location. The doctor should be able to tell you how many cores they took, how many showed CA and also what percentage of the core had CA. In my case it was very small - only 1 of the 12 cores showed CA and it was only in 10% of the CA. In my case it was found very early. My PSA was only in the high 4's; however, it had been going up for slowly for about a year. I was actually being watched for an enlarged prostate for about 4 years.
One of the things I decided to do was see a couple of surgeons right away to get two different views (as mentioned in my first post). It was interesting in that each surgeon gave me additional information and helped calm my fears. One other things I learned during those consults was about "rating" the PC. My surgeon told me that since they found the PC via PSA, the fact that the number of cores was low and there were no lumps via the DRE that my PC was classified very low and therefore - based on probabilities - he did not recommend a bone scan or an MRI. In fact, he also said the data showed that they should not take out the lymph nodes. Being an engineer I started adding all those probabilites together and thought it a good idea to get an MRI. When I called the doctor's assistant back to schedule he went over the facts again and convinved me it was not necessary. So I did not have the other tests. I am not suggesting you not get the tests - but first decide - or consult a couple of experts - and then proceed with whatever tests your doctor suggests.
I am not sure about the other proceedures - but with surgery they like to wait 6 - 8 weeks to let the swelling go down.
best wishes .... and again please take this as informaiton and not "telling or suggesting" what to do. This is a stressful and trying time for all -- keep a positive outlook and even a good sense of humor .... I can not speak for others on this board - but it helped me get through the early days and also my recovery.
As mentioned it is a good idea to get a second opinion on the biopsy pathology. The gleason score is important but so is understanding it so have it explained. It will be important in deciding what to do next.
The same thing happened to my husband. After the biopsy, the urolgoist called and told him we needed to come in and see him, i.e cancer was diagnosed. Then he ordered the bone scan and MRI and that's when I really started to worry. We met with the urologist the following week and prior to this meeting we did not have the Gleason score or tumor grade so we got that when we met with him. If we had to do it over again I'd have insisted we get those numbers prior to the meeting with the urologist. We weren't educated enough when we went there because we didn't have these prior to the appointment. Though I'd done a lot of reading there was too much to absorb. There's a difference between the slow growing cancer(which I hear is 80% of prostate cancers)and the aggressive cancer(Gleason 8-10) and it would have been easier to learn more about which ever kind he had as the treatment options may be different, etc. As it turns out there was no evidence of cancer outside the prostate on either the bone scan or MRI so we were greatly relieved so am hoping the same is true with your husband.
The biopsy results technically belong to you so you have a right to either get a copy or know what's in them before your appointment.
We've called the Urologist office back - primarily to get info. We were told that his Gleason score is 7 - (at this time I do not know if it was 4+3 or 3+4 and I know that makes a difference. We also found out that he had 12 specimens (technical term??) taken - 6 from both sides of the prostate. There was no evidence of cancer on the right side - but 5 of the 6 on the left side had 20% involvement in each of the 5 specimens taken.
We are reading - I'm more hungry for the knowledge than hubby at this point....but that's my makeup. I need all the facts RIGHT NOW - unfortunately I'm realizing this is going to take some time - bone scan was just set back to Monday instead of tomorrow morning..........more waiting.
We've also asked that the biopsy report be sent to John Hopikins for a 2nd opinion. Don't know HOW long that will take - but at least we'll have moved in the right diretions.
I do want to say thank you to all that have replied - it is a huge help to know that there are people out there that can provide information, not necessarily advice - but also know what we are going through. Please continue to respond and keep us in your prayers.
You are in the "drinking from a fire hose" mode. I sounds like you have already learned & absorbed a lot, and have got some good plans. If you order the "Primer" book from an online seller and you can have a copy by Monday. It is an excellent resource.
What was your husband's DRE result?
Also, prior to the very recent PSA results of 20 & 26, what was his prior result, and how long ago was that?
"12 specimens" is simply what it says...that there were 12 tissue samples taken during the biopsy; as you said, 6 from each side.
Hang in there. I'm sure your husband appreciates your digging in...it will help that the two of you have a common understanding of everything.
It seems that "the old sailor who is invinceable" - hadn't had his PSA done over the past five years............it was 1.7 5 years ago.............the first DRE was extremely painful - and that's part of the reason the urologist put him on an antibiotic......he also said it did NOT feel like cancer - in terms of him not being able to feel a hard nodule. It was more like a "wet soggy newspaper"...............lol - not my words! But then when the 4 weeks had passed after being on a very strong antibiotic - and the PSA had gone up to 27 (not 26 as I had originally posted)..........the doctor decided to do a biopsy.........and we now know the results to that........... so we are waiting on the bone scan on Monday.
It sounds like you're going through exactly what I did. I was the one who was trying to learn all I could as fast as I could. He wasn't nearly as interested in learning as I was and I was feeling quite overwhelmed trying to learn it all by myself. It was definitely like "drinking through a fire hose" but I can assure you it will get easier as the days go by and you'll be amazed at how much you've learned. I bought the books and left them out and much to my pleasant surprise he started reading them himself. So that might be a good suggestion for you to try.
The Hopkins second opinion biopsy was done in a matter of days. I asked to have the results sent to us in addition to the urologist but they never came here so you may have to call your urologist to get them if you want them before your next appt.