Need Advice about MRI-S instead of biopsy (or in addition to)

I am so confused right now, and I am hoping someone on here can help clear up a few things.  My husband (age 51) was just diagnosed with prostate cancer.  His psa is 4.5, free psa of 8%.  He hated the urologist he saw--the guy was a total jerk, and no personable bedside manner at all.  Our family doctor refused to give us a referral to another doctor (a story for another day...but he was a total idiot, too..there's a lot of jerks practicing medicine in Maryland, apparently) Long story short, in order to avoid (or put off as long as possible) a biopsy, he went to a center that does the mri-spectroscopy study and ultrasound.  The study came back with evidence of prostatitis, BPH, and organ-confined prostate cancer (the cancer was found using the creatine, choline, citrate ratios..)and it has not escaped the prostate.  According to the doctor and the radiologist, the cancer is very, very small and we could do the "watchful monitoring" safely for up to a year. 

At the time of the mri-s and ultrasound done by this center, neither of us realized that the doctor we went to for the mri-s study and ultrasound only does the HIFU procedure out of the country.  When we found out the cost, we know we simply cannot afford that amount of money.  I wish we could, because it sounds like a very good treatment.  We already checked, and our insurance will not cover one penny of this because it is still considered experimental here in the US.  Our problem is now, we cannot find anyone else willing to see us without a biopsy--even to enroll in the clinical trials, you need biopsy results.  They say it is to obtain a gleason score--is that scoring really necessary if we know that the cancer has not escaped the prostate?  It bugs me that to enter a trial for a non-invasive procedure to treat prostate cancer, you have to undergo an invasive procedure (the biopsy) to diagnose it.  Makes no sense...

Does anyone know of any place that will accept the mri-s results without a biopsy?  If he has a biopsy done (I am thinking that is the only option, now), do we actually get a copy of the written pathology report that we can take to another doctor?  Or do the pathology reports stay with the doctor who did the biopsy?  Are they required to release the results to the patient? 

Please understand that this is all new to us, we only got the diagnosis 4 days ago. I have been doing constant reading and research, but we are stuck at a point where I think he will have to have a biopsy, which he just absolutely dreads. Anyone who has had an mri-s study without a biopsy or any advice about our next step, please reply.  I appreciate your input. Please, if you can refrain, do not make comments about "sucking it up" or being a man regarding the biopsy--I am sure deep down, many of you can relate to the fear and we need encouragement right now, not sarcastic comments. Our own doctors so far have given us enough of those, and this is very discouraging.

Hi dymo2009 well come to the site. Sorry for what your both going though, sound like you know what you want. so you wont get any sarcastic comments from me  I wouldent use them any way and I to cant afort the $20,000.00 for the HIFU procedure eather. The mri-s and ultrasound sounds like a good idea we have all been through this, when I was reading your post your saying you had a bad time with your uro you ort to see what happen to me I have advanced prostrate cancer since 2007 and if there was is one thing I like to tell you two is, if I could do it over again, I never go near a prostrate biopsy. You see in 1998 I had BHP and a PSA of 3.2 so to fix it. I had taken saw palmetto for all those years but in 2007 my wife could not make it to a doctors appointment and if we miss it we would be charge $35.00. I had a pain in my wrist it was just my arthritis playing up again and I just wanted some thing to help me sleep at night. while I was there at the doctors he said I haven't seen you for a while Ray, Your 56 ant you with your age. how about I get you to have a blood test. for me. I said ok it wont do any harm. the blood test come back ok except I had a psa of 4.2 and I was told any thing over 4 is cancer he sent me to get a biopsy I could not get in to see the doctor for two months three month more and I had another psa test again it said it was a psa of 4.0 so I got around to having the biopsy. after I had it my urine was well I was just peeing blood. this went on for a few days then stopped. after I talk to my doctor he said my gleason score was 8 I went to see about getting the robot surgery I flew to two states costing $3,000.00 two uro doctors the first uro doctor we had an appointment at 5pm he keep us wating for three hours while he went to a party he said I need to lose weight and charges me $270.00 the section doctor give me % stats on when I was going to die. then said I have to lose 40 kilos before he could do the robot sugery he was a bit cheaper at 250.00 my wife who and RN I would not let he drive the rental car she was so made at him on the phone she had told both these doctors my weight and both said they would see me if they were not going to do the surgery why did they see me I come home very sad disappointed and disillusioned I sat on the beach and pray to God and cry ed my heart out then I went home a few weeks later I found it difficult to pee I had urine retention again but this was the worse it has ever been next psa test three months later was 8,2 my urine retention was getting worse I now needed pain med's just to sleep I could not even afford even an RP three months after my doctor sent me for a bone scan it found I had the start of prostrate bone met's in my lower back and my ribs I was in a lot of pain I needed to get my psa down some how I ended up contacting a naturopath she charge me just $45.00 put me on to a three month cause of liquid cellular Zeolitte (15 drops 4 times a day) a really his dose of vitamin C 6grams a day and Zinc and a no sugary foods or drink and a low carb diet a week or so later the went away I stayed on the Zeolitte for the three months felt better a year later a bone scan found no prostrate bone met's I've since went on to red clover the Budwig diet and the holistic treatment for prostate cancer. I been on this new one for 12 months now and my psa coming down 12 month ago it was 13.8 now it just 8 I've told others about it. they all had good results until they went off for one reason or another and they started having carbs again some found it is really hard to stay on, but I've done it and will keep doing it. I still take saw palmtto it all works like most of the patient and cargivers all we want to do is help as much as we can. may God bless you both all the best Ray

 

I agree with every word that you said, and my local urologist was a total jerk too, and he's the second urologist jerk I've seen, but the doc who did HIFU on me was the greatest guy.

 51 years old is so young....I sure hope he can do HIFU, money spent on something that could affect the rest of his life, is money well spent.  I think that International HIFU does financing.

Maybe you only checked the Ablatherm trial??  Maybe the Sonablate trial doesn't need a biopsy??  I really don't know, but call 888-874-4384 to find out.

Hope you  can find a way to not do the biopsy.   but, my HIFU doc told me that the chances of it spreading the cancer are really rare....however...I wonder....I'm with you, it's stupid, risky and unnecessary....just a way to make extra $$$. 

 

You need a biopsy before any doctor would even consider treating you. MRIS is used to stage PC after it is diagonosed or to look further when PC is suspected, but a biopsy comes out negative so a suspected area can be rebiopsied. There is no way by just using an MRIS that anyone can determine if you can safely wait for a year. Only a biopsy can give you a gleason grade which is used in determining treatment. I would stay away from any doctor that gave you treatment advice without looking at path reports from a biopsy.

You have the right to any and all tests that are performed, because you paid for them. Get a copy of your MRIS report and all the scans. They will be helpful when a good doctor stages your husband's PC.

Go the the Prostate Cancer Research Institute's web site and look at the section on Newly diagonosed or the YANA web site to learn more about PC and treatment options. These are sites run by professionals with a lot of experience in PC: be very suspect of anadoctal information you get from forums.PC is a very individual disease and a lot depends of your path grade, location of tumor, size of tumor the treatment that will work for you.

JohnT

In any event you husband needs a biopsy, Have him take a vicodine before and make sure the doctor you use gives him a lidocane shot. I've had 13 biopsies, and yes they are uncomfortable, but nesscessary.

JohnT

Here is a good place to read about HIFU, how it works, etc. It's a independent research not-for-profit site: http://www.prostate-cancer.org/education/novelthr/Chinn_Tran

Wikipedia has a good write up also:  http://en.wikipedia.org/wiki/HIFU

And here's a story from Britian: http://www.telegraph.co.uk/health/men_shealth/5713460/Prosta

 I could post many more sites....HIFU is real, it was painless and no side effects, I am so thankful someone stuck their neck out and told me about it.

thank you, everyone, for your kind and quick responses.  I'm still doing a lot of research, and this message board has been a tremendous help to me.  Will keep you posted on developments--we talked to the doctor the other day, and will be evaluating the psa number for the next 3 months.  Then I guess I will be talking my husband into a biopsy if I keep running up against these medical brick walls!  Take care, everyone...

I'm not a Dr but wonder why you are so opposed to a biopsy. Certainly Johns Hopkins is a major center for Prostate cancer and has excellent physicians. I had a biopsy some years ago, at a local practitioners office, following a rise in PSA readings and unfortunately did have prostate cancer. Thank God and my surgeon, 12 years out and so far so good -- no noticeable PSA. The biopsy was uncomfortable but in my opinion worthwhile to get more information to help make an informed decision as to what to do next. I did have a little bleeding as a result of the biopsy but this in my opinion was well worth the information it provided which was that I had considerable cancer of a fairly aggressive type. Good luck