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Endorectal MRI...what to expect? Has anyone done HIFU?

banner888
Posts: 4
Joined: Sep 2011

My husband was diagnosed last month with very low risk prostate cancer: Stage T1C (PSA jumped from 1.6 to 2.2 in 13 months), Gleason 6(3+3)and 1 of 12 cores positive 5-10%. For now he is leaning toward active surveillance while we do research and seek out 2nd opinions but prior to his biopsy we were unaware of the risks and side effects of that procedure.

It was more painful than his dr. led him to believe and his post-biopsy instructions said to expect "slight" bleeding in semen which turned out to be all blood.

His dr. has ordered an endorectal MRI and we don't want to be caught off guard again. If anyone has had one could you please share what your experience was like...what was the prep before, is it painful, did you feel claustrophobic and do you recommend a tranquilizer?

His dr. is also a proponent of HIFU but it is not available in this country...has anyone had that done and were you satisfied with the results?

Thanks in advance for any comments.

hopeful and opt...
Posts: 1291
Joined: Apr 2009

I was diagnosed in March 2009 for my sixty six birthday present. My treatment decision is AS.

I have had an endorectal MRI using a Tesla 1.5, however there is a tesla 3.0 magnet which gives better definition.....there is a test called a Spectroscopy which is given at the same time as the MRI which impprves the image. The spectroscopy is not approved by medical insuraznce, and you have to pay. I had paid 900 for the spectroscopy.

Please fell free to click my handle. I listed various tests an dmy rationals inthe about me section.

Your husband sounds like an ideal candidate for active surveillance. He most likely has indolent cancer, meaning not likely to spread.

Suggest that you attend local support groups, and read, read , read, ask questions, etc.

The initial shock which we all go thru will go away in a couple of months

we are here for you

hopeful and opt...
Posts: 1291
Joined: Apr 2009

I've had 3 mri's. Now adays the machines are fairly spacious. I am above average in height. Anyway, the first time I was in one, I took 2 pills , instead of the one that was presribed, since I once had a bad experience with a neck mri.

I found that I was able to look outside the machine, so I had not taken any relaxer for the next two.

banner888
Posts: 4
Joined: Sep 2011

Thanks for your helpful comments. I didn't mention before that my husband just turned 60. I will find out what kind of machine is used and make sure the procedure includes the spectroscopy. We've been doing as you suggested and reading volumes of information. One book I've found particularly helpful is "Invasion Of The Prostate Snatchers".

hopeful and opt...
Posts: 1291
Joined: Apr 2009

have the MRI machines with a Tesla Magnet

I read the book, I felt that the first several chapters referred to me. You will find that there are self serving docs out there, and you have to be careful that you are not a victim. There are land mines that you have to avoid.

At 60 he qualifies for active surveillance with delayed treatment providing the MRI test shows no extracapular extension, which is highly unlikely.

You will find some that think that a person on Active Surveillance is out of his mind, and they want to get the cancer out by doing an Active Treatment which can have signicant side effects. For example at this site I had people praying for me.

Anyway , although not a medical professional , I am very informed about active surveillance after living it, and doing lots and lots of study.

mrspjd
Posts: 688
Joined: Apr 2010

b8,

Welcome to the PCa forum. Very sorry you have to be here. Based on the PCa stats that you posted, and as you seem to know, it would appear that your husband would fall into the low risk category for PCa. I wonder why your husband’s doctor (what is his specialty?) is recommending an E-MRI? It is not a test that is typically recommended for low risk PCa patients without other higher risk features identified on biopsy. Although, sometimes the E-MRI is used as part of an Active Surveillance (AS) protocol, as H&O described, to establish standards for the AS duration. As you mentioned in your post, AS is a very viable tx option in your husband's case. Nevertheless, it’s always a good idea to obtain a 2nd opinion pathology report from a well-regarded lab that specializes in analyzing PCa biopsy specimens.

The E-MRI with Tesla 3 is an important pre-tx diagnostic test (some say the “gold standard”) for clinically staging intermediate-high risk PCa (as determined by biopsy), especially when bone scan and CT are both negative for distal mets to bones/organs, as was the case for my husband. The E-MRI imaging looks for evidence that the PCa has broken through the perineural membrane of the prostate gland and spread locally (locally advanced) to the seminal vesicles and/or the local lymph nodes. These are the places where the cancer is likely to first spread once it escapes the prostate gland. You can read more about the E-MRI here:
http://www.prostate-cancer.org/pcricms/node/169

My husband had an E-MRI with spec using Tesla 3 technology. He did not feel claustrophobic nor did he require a tranquilizer. (I’m the one that could have used the tranquilizer ;) But everyone is different. When dx'd last Feb 2010, many features of his biopsy indicated a higher level of PCa risk. After the E-MRI his PCa was clinically staged at T3, high volume, locally advanced intermediate/high risk. The E-MRI test results helped us to better evaluate which treatment options might have the best chance for successful outcome with the fewest side effects. So far so good and we are very optimistic about the future.

I’m sure that both you and your husband will do fine as long as you take the time to read and research as much as possible about everything PCa BEFORE you make any decisions. You might start by reading several back pages of posts on the forum. Read through each thread because many times the subject can morph into an entirely different topic. Several threads/posts discuss the pros and cons of different txs including HIFU and all the many forms of RT, as well as AS. The book you're currently reading, IOTPS, should also be helpful. We found that attending an established face to face PCa networking group meeting was particularly informative plus we could personally meet and speak with survivors and ask questions.

The men and women/wives (yes, we’re at the PCa meetings and posting on forums like this one) who have taken this PCa journey before you are here to share what we have learned. And we continue to learn. Good luck.

mrs pjd

hopeful and opt...
Posts: 1291
Joined: Apr 2009

" Nevertheless, it’s always a good idea to obtain a 2nd opinion pathology report from a well-regarded lab that specializes in analyzing PCa biopsy specimens."

It is very important to have a second opinion so that you will not be under or over treated.

banner888
Posts: 4
Joined: Sep 2011

Your replies have been very helpful.

His dr. is a urologist and the reason for the MRI is as you indicated, for establishing standards during AS (not sure what 'tx' or 'dx'd stands for?) We brought up other tests we had learned about during our consultation with him, the MRSI and another one of them being color Doppler ultrasound, but he didn't think that was worth doing. I don't know that I agree with him...I've read that you can see blood flow to the cancer with this test but he thinks it's just a theory...we are definitely getting a second opinion and will pursue that and will have the slides sent to another lab.

If we knew then what we know now I don't think he would have had the biopsy. One comment I've read says "rushing to a biopsy because a PSA is elevated frequently leads to a diagnosis of Low-Risk PCa, frightening men into unnecessary treatment". Fortunately my husband, although concerned, isn't desperate at this point to make a decision about treatment.

I was praying we'd be led to sources to help us through this and this forum has been incredibly informative and I thank you for your information and support!

mrspjd
Posts: 688
Joined: Apr 2010

tx=treatment; tx'd=treated; dx=diagnosis/diagnose; dx'd=diagnosed; RT=radiation therapy/tx

The importance of obtaining a 2nd opinion on the biopsy lab slides cannot be stressed enough. Glad to read you are on it. It is the first of many steps in understanding your husband’s PCa before evaluating tx options, AS included. Each man & each PCa is unique. Therefore, every tx, even AS (AS is a tx in my book), will have a potentially different outcome (and possible side effects) for every man.

There are a few nationally known, well-respected pathology labs that specialize in analyzing prostate biopsy core samples. These are the labs that should be utilized for a 2nd opinion pathology (path) report on biopsy slides. Rest assured that it does not require a second biopsy. A previous thread discusses "How do I obtain a 2nd opinion on my biopsy?" Here's the link where several options are discussed: http://csn.cancer.org/node/212732

Another 2nd opinion, this one from an oncologist who specializes in PCa (like the one who co-wrote the book IOTPS), is also in order. Many urologists and radiation oncologists tend to promote the txs they’re trained to perform or have available at their medical institution. In your husband’s case, he has nothing to lose and everything to gain from a consult with a specialist—a PCa oncologist.

My husband also had a color doppler ultrasound (CDU). We heard the same pro and con opinions from different doctors about the value of the CDU vs the black and white ultrasound. For PJD (my husband), it was a valuable test since both the CDU and the E-MRI together provided critical test results and info that confirmed his T3 PCa staging. But, from the info you’ve presented, my husband’s case is very different from yours.

We found that most issues related to PCa have pro and con opinions and it is ultimately up to you and your husband, as a “patient-active” team, to sort through the data, determine what may be appropriate, and then advocate in favor if you feel strongly about something. That is what we had to do. That said, IMHO, I wouldn’t worry too much about obtaining a color doppler ultrasound right now.

Re your very perceptive statement: “One comment I've read says ‘rushing to a biopsy because a PSA is elevated frequently leads to a diagnosis of Low-Risk PCa, frightening men into unnecessary treatment’. Fortunately my husband, although concerned, isn't desperate at this point to make a decision about treatment.” Good for him! This is exactly the essence of the controversial debate currently taking place in the PCa community regarding the recent United States Preventive Services Task Force’s (USPSTF) draft recommendation against PSA based screening for prostate cancer. If you haven’t already done so, you may wish to read the recent threads (Call to Action, etc.) on this forum discussing this heated topic.

hopeful and opt...
Posts: 1291
Joined: Apr 2009

There are differing opinions about the Color Doppler. At support groups that I attend, men come and show off their Color Doppler pictures. The color pictures are somewhat impressive looking, and many men believe this to be the best thing since apple pie. Additionally some docs prescribe this treatment (including the co-writer of the “Invasion of the Prostate Snatchers”), Dr. Scholtz.
I seriously considered having this test. I spoke with my doc who I respect. He told me that the guidelines call for the basic biopsy, and that a series of these will provide all the information that is needed. He also told me that the e-mri that I had provided all the information that I needed, and a Color Doppler was not needed. He also said that he prescribes color Doppler only in cases where the MRI is not given (due to patient limitations-hardware in body). I spoke with other docs at some of the support groups that I attend who confirmed this.
After your research you may come up with a different conclusion, however the above is what I think

Swingshiftworker
Posts: 623
Joined: Mar 2010

I've had a lot of MRI's in my lifetime and the experience is always the same.

MRI's are NOISY. They make very loud banging and clicking sounds during operation. Make sure to bring a fresh pair of silicone earplugs with you to muffle the sounds. The foam earplugs the staff usually give you are worthless.

You can wear your street clothes during the MRI as long as there is no metal in them. Dress for comfort. I find cotton sweat pants/shirt or lycra workout clothing best because the machine gets hot and they blow cold air through the machine in order to keep you cool.

Don't bring more personal items (keys, wallet etc) w/you than you need. The staff will lock them up for you, if you don't have someone waiting to hold them for you.

You lay on a gurney that then positions your body w/in the the MRI machine, which looks like a big donut hole (around which the magnetic/radio waves are delivered in order to produce the MRI images).

There isn't much space between your face and the upper edge of the hole. So, if you are claustrophobic, that could be a problem and the only solution to this is to close your eyes and control the fear.

The MRI operator can speak and hear you while you're in the machine and can remove you if you are having difficulty w/the experience.

I've never had an E-MRI (yet) but the only difference for that should be the placement of the coil in the rectum.

Hope this helps prepare you for the experience when and if your husband goes in for his E-MRI.

-----------------------------------

PS: Others have already provided you w/good info about the E-MRI as a diagnostic tool, so I didn't bother commenting on that (not that I know much about it in any event).

However, no one has commented on your HIFU question yet and I don't think I recall anyone here saying that they've ever received the treatment. I looked briefly into HIFU before I chose CK but ruled it out because it was not covered by insurance and required trips out of country to get it done.

The Cancer Forums has an "Official HIFU Thread" which may be a good starting point to find the info you need. You can find it here http://www.cancerforums.net/threads/10348-Official-HIFU-thread.

Good luck!

dakotarunner's picture
dakotarunner
Posts: 96
Joined: Feb 2004

I have had two endorectal MRI's. As far as your questions go, there was really no prep before hand. They did offer a tranquilizer of some type, which I did not take the first time, nor the second time. Is it painful? Well, the device goes into your retum a ways, so there is a little stretching that goes on, so maybe that is why some like the tranquilizer. It is nothing like getting a biopsy though. No needle jabs or the tearing, tugging sensation. I did not feel claustophobic, I just kind of laid on my side and did what they said. I would have to say that the second time around was easier than the first, as I knew what was going to take place. Attire was just a birthday suite and gown. No pain or ache afterwards, so no worry there.

Best of luck to you and your husband in the journey.

dr

mrspjd
Posts: 688
Joined: Apr 2010

DKrunner,

Wondering if you might be willing to share or elaborate on the chronology of your two E-MRI imaging studies in the context of your PCa history. Unsure, but I seem to recall that you had a RP.

In other words, when was the first E-MRI image study performed (perhaps after dx and before primary tx?) and how were those 1st results utilized (maybe for pre tx staging?). Then, how long after the first was the 2nd study, assuming it was much later (possibly a rising PSA post tx, or a recurrence)? Were the imaging results for the 2nd study different than the 1st or helpful in providing add’l info that the 1st study did not pick up? How was the info from the 2nd image study used (for salvage tx?).

I apologize if these questions are intrusive. Just trying to understand how the two E-MRI’s played a role in your PCa journey. Thanks for any add’l info you might be able to provide. I hope you are well and that your running/racing continues unabated.

buzzz
Posts: 26
Joined: Aug 2010

I had HIFU over two years ago, I am extremely happy that I chose it, I had no problems or pain or side effects.

Wondering how old your husband is, if he is over 60 maybe he shouldn't do anything.

I had HIFU in the Bahamas, I was on the beach 4 hours post treatment, marveling at how lucky I was to take the leap of chance and leave the country with an unknown.

The medical team was 5 star and everything about my experience was perfect.

There are rules he must follow or he could have trouble, so listen to the doctor carefully. Mostly he must drink 10 glasses of water a day, as the ash from the prostate is in there and if he doesn't wash it out (the reason for the catheter is the ash) it could get stuck coming out the urethra. Don't let him get in a hurry to yank the catheter, wait to make sure all the ash is gone, at least 19 days. This is hard to remember, as he will feel perfect and wants to go back to life as usual. My doctor recommended Cialis for a few weeks, which is just to keep the veins open as they can be tramatized during treatment, so they heal correctly.

I have a few friends who had HIFU also, no one has had any problems. My PSA is undetectable.

Much good luck, you already have good luck as you have a doctor who recommends HIFU, most don't because they don't sell it.

dakotarunner's picture
dakotarunner
Posts: 96
Joined: Feb 2004

No problem on my end(excuse the pun). Both E-MRI's came a number of years after the RP. First time was about 4 yrs. after my RP. Had some numbers showing up that were above the undectable stage on my PSA tests. Went back to Mayo and got checked out with regular MRI, E-MRI and I don't remember what else. Seems like after you have done it the first time, the subsequent tests and scans are old hat. Nothing was certain was found, but I get my PSA blood draw sent to Mayo so same lab is used each time for evaluation. Only alternative was to get the shot, which would lower the PSA numbers, but would not solve the problem, if there is one. I said no thanks, been there, done that, and I really hated the hot flashes.

The second E-MRI was about 5 1/2 years after my RP. Had big time swelling in my left leg and foot, big time in that I could hardly slide the lower part of my Levis over the calf of my leg, and I consider myself pretty trim. Back to Mayo, which included the E-MRI, but nothing of notable difference found. They diagnosed swelling as being Lymphedema (sp?)due to Lymph nodes removed in the RP. I can control it with Jobst stocking and full leg boot at night. Small trade for the five to six year expectancy I was given in '04.

From what I remember, the E-MRI is used to give a better, localized view of the prostate bed. After having it done twice, it makes sense. If you have been thru the PC process, it is just one more procedure that you put up with. In my case, we think some cancer cells may have not gotten the boot during RP, but trying to locate the little bastards has not been easy, so it is watch and wait. A fellow asked me if I was upset about it, and I am not. You do the best you can, which I feel I have done to this point. Getting upset or mad about it would not do me any good, but when we find those little bastards, I am sure as heck going to get even!.

Not runing as much any more, but love to walk or hike everyday. Have done some 20 - 24 milers, so health is no issue. Best to you and all the brothers in the PC bond.

dr

The Nev
Posts: 50
Joined: Sep 2009

Well I had one of these and this is my experience. First they stick a probe up your butt it’s not huge but it is uncomfortable. Then they put you in the MRI feet first so no real reason to be claustrophobic. They pulled me out of the MRI several times and adjusted or moved the probe again very uncomfortable. So all in all it was a very unpleasant experience, uncomfortable but no really painful and for me no claustrophobia. Hope that helps

David_B
Posts: 10
Joined: Oct 2011

I also had a very difficult experience with my biopsy, including a tremendous amount of blood, swelling and a visit to the emergency room. However it was suggested to me later that it might been prevented by a "more skilled hand" and a proactive use of Flomax before and directly after the procedure. I had an endorectal MRI (also known as an MRI with coil). No problems. I know very little about HIFU. I would suggest some visits with some skilled radiation oncologists (more than one). Active surveillance is certainly an option; but with no real breakthroughs on the horizon, some form of radiation (external, seed or cyberknife) may be a good alternative to surgery. I visited with 3 different hospitals/ cancer centers in the Philadelphia area before I settled on LDR Brachytherapy (radiation seed implants) at Fox Chase Cancer Center. My procedure was on October 12th, two days ago. So far, so good. My testimony "Why I Chose Radiation Seed Implants over Surgery" is on this site. Good luck with your decision.

David_B
Posts: 10
Joined: Oct 2011

R

davidp46
Posts: 11
Joined: Mar 2011

Hello,
I had one on 1/19/11 due to the fact that my psa was climbing (to 60.5) and my first 3 biopsies over two years found no cancer.

The procedure is a chore. I'm claustraphobic. It took about 50 minutes. The endorectal device is no fun but you forget its there after a bit of time. This machine was not spacious. (I think I spent about 49 minutes saying the Jesus prayer).

Net result was that many parts looked good but there were 3 areas of concern. The MRI is not able to definitively id cancer. Due the concern areas, I had the 4th biopsy where the radiologist assisted the urologist to do a saturation biopsy (32 cores plus 20+ fragments) on the MRI areas of concern on the right apex and at the right neck. These areas would not normally be accessed with standard biopsy.

Cancer was found in a number of cores. Gleason was 8(4+4).

I'm very glad I did the MRI because I believe that the cancer would not have been found using other tools.

Like many things, I would have preferred to not have to do it but now I'm very glad I did. Otherwise, I would still be attributing the high psa number to BPH and probably would have lost to the cancer.

There was an option to be sedated during the MRI but that would require a number of sensors and wires be attached to the body. In my case, there was NO wiggle room in the machine so the wires would have made things much worse.
Take Care.

mrspjd
Posts: 688
Joined: Apr 2010

Good point. The imaging on the MRI and/or the CDU may also be used to guide a skilled and experienced medical professional in obtaining a real time targeted biopsy of “suspicious” areas.

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