50 Year Old Husband Just Diagnosed with Prostate Cancer

Hi Diamonds, very sorry about your husbands diagnosis. I know it's difficult, but take a breath and try to relax. You have some time to figure this out. I am in NE and can't help with specific doctors. I'm sure others will weigh it. You can't do better than John Hopkins or Memorial Sloan Kettering in NYC. You should get a second opinion on biopsy from Epstein at John Hopkins if possible. BB

Dear Casey,

My husband wasn't sure if the Dr. said 8 of 12 were positive or 11 out 16.

He said that cancer was found in both lobes of the prostate. Thanks . Can you recommend an excellent surgeon?

Hi Diamonds, it's awful news when you're first faced with it, but from what you tell us, as BB and Casey say, the numbers and news you've shared look good. Good in the sense that you can reasonably use the "C" word all us PCa guys love: CURE.

I vote (strongly) in favor of getting a second read of your husband's slides. And, if you can't organize one of the 'big name' PCa pathologists seek out someone who reads lots of prostate tissue and who surgeons and urologists like --- the pathologist they'd want to read their prostate slides.

As you may know, the Gleason score is made up of two numbers, each a ranking of abnormal prostate tissue. The first number is what is most seen, the second number is the next most common abnormal tissue. A Gleason 6 is 3 + 3. Anything less than 3 is just abnormal, not called cancer. The pathologist is saying the tissue is abnormal enough to be low grade cancer and telling you there's no sign of mid grade, or high grade cancer. That's good news. As you can see below with my stats, I was predominantly low grade, but I had some mid-grade nasty cells making me a Gleason 7.

No sign of cancer is the best possible news. A Gleason 6 is the next best thing. I don't want to downplay the fact this sounds like a significant tumor, but it's important you understand its low ranking.

You say your head is spinning and you're sick at your stomach. I believe you. That's how I felt, near two years ago now when I first heard the dreaded news: cancer. I totally believe you on your head and stomach. Been there, done that.

Now, it's your turn to believe me. As you gather information, knowledge really does become power, and with knowledge and power fear disipates --- it gets put into perspective. Right now you don't have that perspective, and so your reaction is a reasonable one, but from what you've told us, with a bit more research, your comfort level will soar and that brave face you're putting on, won't be a put on.

I do hope you'll keep posting and let us know how you and your husband are doing.

Give your husband a big hug and do your best to take a deep breath and relax. You're both bound to come through this with flying colors!

Sheldon AKA Sleepless

Welcome Diamonds (and Husband)

This is probably the hardest part, the first few days and weeks after diagnosis. And I am so sorry you are so worried about it. I think we (including partners) have all experienced it. It's hard getting your heads round this, but it may help to realise that you do not have to rush into making decisons and can take your time to A) come to terms with the news and B) work out what treatment will be best.
One bit of information I haven't spotted in your posts is your husband's age, as that may have some bearing on what treatment options are the best.

Due to things like the Forum rules, folk here may be a little reluctant to mention specific doctors by name, but will tend to steer you towards good hospitals etc. I won't do either, as I live in The Netherlands and have no first hand experience of what goes on in the States. But I am sure you will find helpful advice here.

Best wishes
Alf

Diamond, as a wife, I know exactly how you are feeling. My husband (John) was diagnosed three years ago at 57 years of age. In his case, Gleason was 7 (3+4) and the cancer was confined to one side of the gland. He opted for robotic surgery and the third anniversary is coming up in mid March. PSA at diagnosis was 6.4.

While I cannot recommend a surgeon in the Philadelphia-to-New York City area, I can empathize with what you are going through right now. Hearing that your loved one has cancer is like a lightning bolt shooting through you...our initial reaction tends to be visceral and all we can think of is "get it out." When the urologist called us at home to give us the news that John had PCa, I literally felt the ground tilt under my feet. John was cool, calm and collected, but I was a wreck.

If your husband decides on surgery, there's nothing that can be done for about 6 or 7 weeks after biopsy so you have a few weeks to think, plan, and research...and to get that second opinion on his pathology report. The bone scan is likely a waste of time and may add to your anxiety since any injury to the bone (including arthritis) shows up on the test and may require further investigation. My husband had a CT scan shortly after the biopsy which showed nothing. Our surgeon said no bone scan needed since, with a PSA of 6.4, it wouldn't tell him anything. I suspect that a bone scan is more to cover the doctor's butt but you should certainly speak further with the doctor about this test.

I'm sorry I can't offer more information but just wanted you to know that there are quite a few of us women who have been where you are now. Trust me, you will get through this.

First, go to; http://pathology.jhu.edu/department/services/secondopinion.cfm - click on and fill out both sets of forms, I have my slides, I don't have my slides, on the right side of the page. Unlike other PDF's it will save to your hard drive. Make a copy of you insurance card both sides. Fill and print both sets of forms off and put a sticky note one saying I have the slides or one the lab has them.


Second call and get appointment with your husbands urologist and if all possible go with him. During the appointment ask the doctor for a copy of the biopsy results hard copy. Ask him where your slides are? Most doctors send them out of town to some lab, mine went to Georgia even though I live in New Jersey. So my doctor took the set of forms that said I don't have the slides. He contacted the lab and had them shipped to John Hopkins and faxed the forms along with the copy I made of my health insurance. If your slides are local then go and pick them up go to FEDEX and follow the instructions on the sheet Hopkins provides. Also if you are handling the slides highlight each place your doctor has to provide information and have him fill it out right then and there.

Wait for Hopkins results, in my case I went to the doctor on Friday and he called me the following Wednesday with Hopkins report which didn't concur with the original lab. After the Hopkins report comes back to your doctor go in and get a copy.

Doctors or centers, what major city do you live near without being to specific? My location puts in two hours from New York, one hour from Philadelphia and 3 hours from Baltimore John Hopkins where I have an appointment in a few weeks.

Dear Bill 88,

Thank you. so much. It seems that you are the beginning of this ordeal as are we . How long to get the pathology reports? I will do that ASAP

 I am interested as to why you decided to go to Hopkins for 2nd opinion on treatment? My husband seems to think that Hopkins is where one goes for surgical consults .

 Do you have any info regarding the following Are you of the opinion that they will present others choices for treatment ? What is their opinion on Robotic ? Do you have any idea of their results for localized RP and incidence og ED and Incontinance

Please keep in touch and God Bless You

Dear P_Elliot,

Thanks for your cander. You are lucky to have such a wife who is able to use her humor to diffuse the fear. I will try to do that as well

I'm happy you had good results. Do you mind sharing your diagnosis , age , treatment?

diamonds3,   “ After a diagnosis of prostate cancer (PC) has been made and the initial shock of a life-threatening diagnosis has begun to lessen , the thoughts of the patient almost invariably focus on “What should I do to get rid of this disease?” Family and friends reinforce this mental set, as well as add to the anxiety of the situation by asking, “What are you going to do?”   The main focus in the context of a new diagnosis of PC, however, should not be on what particular treatment should I select, but rather on understanding the specific expressions of his illness, and how they lead to a rational choice of therapy. In such a setting or context, the patient and his team act as medical detectives ¾ to gather information, analyze, re-evaluate, and then begin to consider what to do.   No patient or family is magically transformed into a PC expert upon being diagnosed with this disease. Life is not that simple. Amazingly, there are patients who rise to this threatening “occasion” and educate themselves to a degree that many physicians find astoundingly impressive. Many other men delegate this empowerment process to others -- especially their wives or their partners. These men do not enter the empowerment process and do not optimize their chance of a successful outcome. They also miss the opportunity to bond with other men and/or women and the ability to not only receive guidance but to give it to others in return.   The heart of Empowerment involves taking responsibility for, and authority over one’s own outcomes based on education and knowledge of the consequences and contingencies involved in one’s own decisions. This focus provides the uplifting energy that can sustain in the face of crisis .”     These are the words of one of the recognized experts in prostate cancer, Dr Stephen Strum from an article he wrote titled “ vol%20 19-4.pdf" target=_blank rel=nofollow> A Strategy of Success in the Treatment of Prostate Cancer .”   It’s good advice, and as such, I’m not going to prematurely press the conversation into treatment choices…there is plenty of time in upcoming days to start talking about that.   Others may be quick to recommend this method or that method; I’m going to tell you, however, that you don’t need to rush.   In a very, very large percentage of cases, prostate cancer is not the fast-growing devil that other cancers can be.   Do yourself and your husband a favor, and move at a deliberate pace to reach a treatment decision, as Dr Strum recommends.   You’ve already gotten input on getting a 2 nd biopsy reading opinion…I would continue to follow through with that; this is a highly recommended “best practice.”   In parallel, I would recommend placing an online order today for a book considered by many to be the “bible” of prostate cancer:   “ Dr Patrick Walsh’s Guide to Surviving Prostate Cancer ”.   Dr Strum’s book is a good second choice, and lots of other 3 rd choices…    I recommend placing an order today for Dr Walsh’s book in order to start & solidify your education process.   Here’s another “tool” which I can provide for you to begin previewing.   It’s called the “ Guideline for the Management of Clinically Localized Prostate Cancer:   2007 Update .”   It is a publication of the American Urological Association, and it’s available free online.   As I already stressed, you shouldn’t be making treatment decisions now, but this will help you to frame-up a decision making process.   In summary, the document guides you to closely examine four facts/dimensions about your husband in order to make the most personally appropriate treatment decision:   his cancer characteristics , his overall health , his life expectancy (age) , and his personality/values .     I followed this guideline fairly closely in my decision making process, and it left me with high confidence before, and after, my treatment that I had done the right thing… right for me .   This guideline doesn’t steer anyone toward one treatment or the other, but helps with the decision making process.   Later, if you are interested, I can/will share how I analyzed these dimensions for myself (again, my age and case sounds very similar to your husband’s).   I’m now 2-years past my diagnosis, and consider myself fully recovered…and I will probably never have to deal with PC again in my life.   We have a group of guys here at this site who are at various stages of our recovery, after various treatments, who are focused on lifestyle modification to improve our longevity and quality of life…right now we are focused on a “ PC/Aerobic Exercise Challenge ”, but we’ve had lots of lifestyle discussions on diet/nutrition for both fighting prostate cancer and other “best practices.”   The only reason I mention this now to you is that over the next several months (between now and your husband’s possible treatment), he should consider undertaking an exercise routine to get himself into the best physical shape possible.   It will absolutely help in his recovery.   I hope that you take Dr Strum’s words at the beginning of this post to heart…way, way too many people rush unnecessarily into treatment discussions and decisions.   I encourage you to get a complete understanding of your husband’s case, learn about all the treatment options, and follow the decision methodology to explore what’s important.   In your learning process, don’t be shy about seeking the best doctors at the Comprehensive Cancer Centers I previously listed…they all take insurance just like all the other doctors.   I’m in Chicago-area, and only know names of doctors in your area that I’ve read about who are very highly regarded.   I could send some of those, but hopefully others with first-hand experience with those docs will also chime in.   best regards…  

Gosh I love this site...this is what it is all about, great info in this post..

Good luck Diamonds, not a darn thing I can add .   

Hero

Dear Members,

Thanks so much for your excellent recommendations and feedback. Perhaps the best thing about this sort of thing is realizing how kind, campassionate human beings can be.

I would like to especially thank those who gave me specific things to do, where to go and whom to see.

I realize , Casey, that my husband must take the reins... I am fowarding to him those responses which will inform and give him hope and friendship as I know I was overwhelmed when I first came to this site because of all the information.

I am hoping that he will find it to be an invaluable source of support as have I.

You have gotten a lot of good advice. But remember that even when you are dealing with the top doctors there is still uncertainty. My uro (one of those mentioned above) told me that it was very frustrating that he could perform two surgeries which seemed the same to him but had different outcomes. That is, there are factors that are beyond the skill of the most skilled.

With your first deep breath remember that prostate cancer is very curable. There is no "best" only a "reasonable choice."