my husband recently diagnosed_never missed a PSA checkup

Hi everyone, I see how informative this group is and I wish good health for all of you who have been diagnosed. My husband has always been in great health, and always had his PSA checked each year,and is 65 years of age. (A young 65) lo and behold his numbers had gone from 3.6-7.1, and DRE was normal. He has a family history, his father died of prostate cancer (no one knew he had it,he never told them until he had severe bone pain) by that time it was too late. My hubby is one of six brothers and one of his brothers had it also,and he had his prostate removed. Is mind boggling to me as within 6 months his PSA which was always within normal limits jumped like that-his biopsy was 8 out of 12 cores positive and a gleason of 4+3 bone scan shows he has a met to his pelvic area. How did this happen since he was always getting checked??? He is now on hormone therapy. Casodex generic and lupron shot which he just got today and he will get a shot for a bone strengthened too. Denusab I think it's called. I still am mind boggled over this. What happens now?

Thank you for your reply Andrew. I asked Dr regarding radiation and he said something about if someone has bone pain they usually do that maybe his his a little differentiated on his pelvic area. He said the Lupton and generic casodex is what he needs now. My husband really likes this doctor, he seems to have really good credentials but I always say second opinion is good also, but hubby is happy now with this doctor-I'm still in the "I can't believe this" stage

Hi Sammyswife, sorry you have to be here, but it is a good place.

Your husband sounds like he is on the same path as me. I've been on Lupron(Eligard)/Casodex with the monthly Denosumab as well for about 5 months. Luckily, the side effects for me have been pretty minimally annoying and the treatment is going well. PSA down from 121 to 1.8 and still dropping.

One word of advice is to be sure he has any major type of dental work done before starting the denosumab, if you can. It can have some really nasty jawbone side effects in some people. Normal cleaning and stuff is fine, but extractions and bone related dental work can be a real big problem. Also, keep your insurance premiums paid up--those denosumab shots are like $3000 a month, apparently. At least that is what my doctor bills my insurance company.

Sammyswife,

Sorry for your husband's diagnosis. I can totally relate to the shock that you must be feeling...with getting checked regularly, etc...hang in there...things will calm down eventually.

My first suggestion is to get a good medical oncologist and perhaps one that specializes in prostate cancer that you meet with periodically.

The drug for his bones is probably xgeva (Denosomab). It is a fairly new drug to prevent fractures and slow down the bone rebuilding process. It does have a side effect of ONJ (ostecronosis of the jaw), but it is extremely rare. I was on it for a year every month...now every 6 months.

So, where is this spot that shows up on scan? Are they sure it is a met?

Jerry

Sammyswife -

I am so very sorry about your husband's DX and can truly understand how you feel. I'm glad you found this forum as it is the BEST place we've found for support and information.

Did you get a second opinion on your husband's biopsy slides? I understand that finding the met on the bone scan set you on your treatment path, but confirmation of the Gleason score might help in the future.

Suz

Hi Sammyswife,
Very sorry to hear about your husbands diagnosis. The met to the Sacrum is a little alarming but if it actually is a met, hormone therapy will help shrink it. It is unusual with a low PSA but Pca is a funny beast. I, like your husband, had regular exams but missed one year. During that time my PSA skyrocketed. I think for some of us its just a matter of luck, or the lack of it.

Like Andrew said, learn as much about this thing as possible and be your own best advocate. You and yiur husband are now partners with your Doctors in fighting this thing. Best wishes to the both of you.

Post Edited (Almost a 10) : 9/7/2015 7:14:29 AM (GMT-6)

SW, no it's not so much the Gleason score of 7 that makes mets to pelvic bone surprising, it's the PSA score. Generally a PSA under 10 would indicate a low likelihood of bone mets,

I was the one who asked about surgery. I'm no expert by any stretch, but I would want some further proof that the pelvic met was really a met. I had abnormalities on my bone scan (PSA 4.3) at diagnosis but was told it was degenerative disease or arthritis. Any number of benign bone issues could light up a bone scan or CT scan. I would just press the issue a bit, and if necessary, get another opinion.

Also, and again, I stress I'm no expert, but even if it was a bone met, couldn't they radiate it, since it was just one met, and also use Radiation, ie Brachytherapy, SBRT, etc as primary treatment on the prostate?
Someone else, more knowledgeable than me will chime in as to whether that makes sens, but I just thought it would be worth asking.

Not saying radiation instead of Ht, but in conjunction with HT

Post Edited (Pratoman) : 9/6/2015 7:05:50 AM (GMT-6)

I can understand your confusion. I am 17 months into this with my husband and still learning. I think if there is only one spot, and a low PSA, I would have them explore further, other things can show up on scans that look like a met, but are not. Also, like Pratoman said, a single spot or two they should be able to radiate it. Don't think the worst and get answers. I am sorry about your mom.

Two things...
First, i think an important point needs to be made. With many types of cancer, when you are classified as stage 4, you are in deep doodoo, and have some limited time on this earth. With prostate cancer, many times, especially with your (SW) husbands low PSA, this is not the case. It means that the cancer (assuming that spot is in fact a met) has traveled to a distant area. BUT... It is usually still highly treatable. Dont get me wrong, there are no guarantees, for any of us. But it's likely that your Drs will get control of this thing and your husband will not be going anywhere soon. Don't think that Stage 4 means that its over.

The other thing is, Jerry's comment, when he said ..."I would not focus on the whole screening thing, but now focus on how to kick this thing back so you can get back to your lives"... is spot on, something i was thinking myself when reading your last post. Its frustrating for sure, to think that you were doing the right things all along, and then they tell you you're diagnosed with mets. Crazy. But it is what it is, put your energy into going to battle with no regrets. (i know, easy to say

Hello Jerry's Wife,
As you can see, there are some real pros on this site. I can't add any thing other than my prayers and good wishes. There is definitely hope.
Regards, John

I would wait to see what the suspicious "met" does on hormone therapy first. There's nothing that a second opinion can tell you until you have that info, so you might as well wait for it.

I wanted to ask another question, as you are all very helpful. When the biopsy is taken, and the pathologist studies the cells, HE (the pathologist) is the one who is able to know which cells they are...meaning, if they are low agressive, intermediate, or high aggressive....I dont know the names, adenicarcinoma? small cell? Im not familiar with that part but......than the protocol is that he speaks to the urologist in our case as of now...and than (also the bone scan and cat scan in my hubbys case) thats how they make the decision to which treatment to do right? Remember I know nothing and am still learning, reading the answer to my posts from all of you.....just get a little freaked out when I see "small cell" on the some of the postings, but again, the doctor would know which therapy is suited for which type ...right?

Hi sammyswife,

Yes, the pathologist looked at the cores from Sammy's biopsy and wrote a biopsy report that he sent to your urologist. You should obtain and keep a copy. If you ever see another doctor, he will need to see that first. In the biopsy report, the pathologist gave his opinion about what he saw in each core, including the type of cancer, the Gleason score, and the % cancer, if any. Some types of cancer, like "small cell" look very different under the microscope, but some may look similar and if the pathologist is not using the right stain to look for it, he may miss it. Also, pathologists have to be able to identify an enormous range of tissue types and conditions. That's why many of us recommend a second opinion from Bostwick or Epstein - they read prostate cancer slides only.

Bone scans don't identify mets, they identify areas of bone overgrowth. That can happen from arthritis or childhood injuries. They use the CT to give another clue. (You should obtain copies of the radiologist's reports too.) The radiologist usually uses hedging language like "it is consistent with metastasis." They can't be definitive until a pathologist studies a bone tissue sample under a microscope. Most often, the treating physician does not order a bone biopsy if all other diagnostics point in that direction. The other diagnostics may include PSADT, presence of high Gleason grade (4 or 6), enlarged pelvic lymph nodes, bulges in the prostate,bone alkaline phosphatase and hemoglobin. Sometimes, he'll order a more specific scan, called a PET scan (and there are several types of those). The other sure method of diagnosis that doesn't require a bone biopsy is to give the man hormone therapy to see if that shrinks the suspicious lesion. If it shrinks, it is a met.

The notion I'd like to leave you with is that it is not necessarily up to the doctor to make treatment decisions, it can be up to you and Sammy. The doctor's role can be to explain the alternatives, the risks and benefits, and to follow through with whatever treatment plan you and he mutually decide upon. Only you and Sammy can know what is most important to you, what trade-offs you are willing to make, what risks you are willing to take, etc. The term used for this process is "shared decision making." The older way of doing things is called the "paternalistic" model - you just trust the doctor to do whatever he thinks is best. Many patients prefer the paternalistic model because it relieves them of all the responsibility. And some "old school" doctors prefer it because they have to spend less time explaining everything. I am a BIG advocate for patient empowerment, but I recognize it's not for everyone and requires more work, especially self-assessment work, from the patient, and a lot more communication.

- Allen