Question about where to get biopsy. - Prostate Cancer N...

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Question about where to get biopsy.

LemonPan
LemonPan

Three months ago, my husband had an elevated PSA. The doctor advised retesting in three months before rushing to a biopsy.

Follow-up bloodwork shows the PSA remains elevated. PSA 5.2; free PSA 10.4. Husband is 56 with no symptoms. A biopsy is now recommended.

We live in upstate NY and it looks like our insurance covers Sloan Kettering. Do we start at Sloan Kettering for the biopsy or is this something that can/should be handled locally?

That’s what I’m confused about right now: where to get the initial biopsy. (Actually, I’m confused and overwhelmed by a lot but that’s my pressing concern right now.)

Thank you. This forum has already been very, very helpful.

51 Replies

This is wife to wife - I am new to this and we are just going through this and dealing with a new PC diagnosis. My personal opinion is that if it is convenient to go to Sloane and you can get in relatively soon you might want to just start there. Then if there is PC, you are already at a high volume cancer and in their system for consultations. You won't have as many hurdles getting appointments. Alternatively if its not convenient you can get it done locally, but I would make sure its done with some sort of anesthesia (conscious sedation or general) and they are getting a bunch of samples. If you want something closer to you look at the NCCN website, they identify cancer centers and I think there may be others upstate perhaps closer to you. My husband had an MRI fusion guided biopsy under anesthesia so it targeted the lesion.

LemonPan
LemonPan in reply to Cobb_

Thank you. This is so helpful.

A biopsy isn't rocket science. You can get it done locally, but make sure:

(1) they take a rectal culture for resistant e coli and give him the right antibiotic, or they do the procedure transperineally.

(2) they use a periprostatic nerve block or a pelvic plexus nerve block given by a urologist who knows how to find those nerve ganglia.

It is also a good idea to get a second opinion on the biopsy slides from Epstein's lab at Johns Hopkins.

LemonPan
LemonPan in reply to Tall_Allen

Thank you. Everything feels confusing right now. I appreciate this advice.

Justfor_
Justfor_ in reply to LemonPan

Multi-parsmetric MRI first and guided (fusion) biopsy afterwards. This is the current best practice

LemonPan
LemonPan in reply to Justfor_

Ah. I'd wondered about this. What the best next step was. Thank you for mentioning the steps, MRI and then guided biopsy. I'll have to make sure these are available in our area.

I appreciate you taking the time to answer me!

rscic
rscic in reply to LemonPan

The large Cancer Centers (like MSK) will be up to date on the latest procedures, protocols & techniques.

Get the biopsy ASAP! Your local urologist can do it. I was 59 and had a PSA of 5.2. My Urologist said we could wait another 3 months and check again. I said okay. Then went home and thought about it and decided to go ahead with the biopsy. Ended up being a Gleason 8! Glad I didn’t wait the extra 3 months. Had surgery immediately. Contained to the prostate with a 2mm positive margin. Now 3 years out with no ED or incontinence and PSA <0.02. I shudder to think if I would have waited another 3 months.

Murk
Murk in reply to leach234

Some will rightly say to take your time, go slow. Like leach234 I thought pffft, hey I am not going to panic but no way am I gonna let it grow and possibly metastasize! I had similar numbers and experience as he...

LemonPan
LemonPan in reply to leach234

Thank you for sharing this. We both feel it's time for the biopsy. May I ask if you had your surgery locally or at a large center?

leach234
leach234 in reply to LemonPan

First of all, the surgeon is more important than the surgery center. I live in LA and there are only 3 surgeons in all of LA that I would have used. I had my surgery done at UCI in Orange, CA. Dr. Thomas Ahlering did my surgery. He has over 2,000 robotic prostatectomies under his belt (it takes 250-500 surgeries just to get proficient on the robot and practice makes perfect). A record of 87% continence after 1 year and 80% sexual recovery after 2 years. People fly from all the world for his services and he only takes cash because he’s in such demand. $7,000 for his fee. You can look him up on the internet. Mitt Romney flew out for him to do his surgery and he could have gone anywhere. If I lived on the East Coast I would look at David Lee at Penn Presbyterian. I hear he is excellent.

LemonPan
LemonPan in reply to leach234

Thank you! I will look up Dr. Ahlering.

I don't think Penn is an option for us based on insurance but I'll surely look.

leach234
leach234 in reply to LemonPan

I strongly, strongly urge you to travel if needed. With a good surgeon it is only an overnight stay in the hospital and your local urologist can be used for all follow-ups. Your husband will be living with the results for the rest of his life!!!!! Go for the best! AND DO YOUR RESEARCH. I can’t emphasize this enough. Someone who has done lots and lots of surgeries AND publishes their results.

I once had 1/3 of my ear bitten off by a dog. The world’s best ear reconstruction surgeon was in Paris, France. I flew there twice from LA. Once for the consult and once for the surgery. Today nobody can even tell it ever happened!

Mufj
Mufj in reply to LemonPan

Patient at penn

Understand david lee is leaving and going to california

I agree with leach 234 & Murk

Everything hangs on an accurate diagnosis, if you can't get one locally, go to Sloan.(A TRUS isn't accurate)

If you are in UpState NY are you anywhere near Rochester? Wilmot Cancer Institute at Strong Memorial is top notch. I had HDRBrachytherapy completed through UR Medicine at Highland Hospital in October. (BTW we are in Binghamton, NY).

LemonPan
LemonPan in reply to CarverD

We are in Albany but have family in Rochester. So Strong is a total possibility!

CarverD
CarverD in reply to LemonPan

I am a major fan of Strong Memorial and UR Medicine. You can most likely have the biopsy completed locally. I wouldn't freak out yet as the increase in PSA can be caused by other things than cancer like an enlarged prostate (BPH). When mine increased we did find cancer but caught it early enough that I was able to go with a mono treatment. No matter what your husband has a lot of time to research and make the decision that is best for him. Many urologists work with surgeons and push surgery - take your time and research as there are many other viable treatments. Feel free to message me privately if you want to discuss further. Best of luck to both of you!

LemonPan
LemonPan in reply to CarverD

Thank you for taking the time to talk to me. This forum has already been so invaluable. I definitely have a lot to learn but the one thing that stands out is that we don't have to rush. I appreciate hearing this because my natural reaction is to want him seen/treated RIGHT NOW.

My friends in Rochester rave about Strong and one local friend went there for treatment of a very complicated brain tumor.

We've decided to take the weekend to just absorb this and then start making appointments next week.

Again, thank you.

CarverD
CarverD in reply to LemonPan

Not a problem at all. I learned of my cancer on 12/18/2019 and know that this can bend the brain quite a bit. At this point you really have very little information to work with until you have the biopsy. Most likely they will suggest a TRUS biopsy (12 random needles) - a little lidocaine gel is all that is needed for anesthesia, and a major antibiotic 2 days before and 1 after. I drove myself to this and back home 25 minutes later. If insurance will cover it an MRI guided biopsy is much preferred. In fact, getting a 3T MRI prior to biopsy to see if there are actually any lesions is the best bet. Once they know that there are lessons the biopsy can target them rather than randomly shooting needles. My TRUS biopsy actually missed one of my three tumors all together (found it with the 3T MRI). Once you get the results feel free to give me a shout if you like - there are a lot of resources out there and I would be happy to direct you to some of the better ones. - doug

LemonPan
LemonPan in reply to CarverD

This is exactly the type of information I need.

And "At this point you really have very little information to work with until you have the biopsy. " <--I'm trying to remember this. It's so easy for my mind to put *all* the horses before the cart.

CarverD
CarverD in reply to LemonPan

LOL With this type of cancer putting the "horse before the cart" is a bad idea. The best advice I have received is to remain calm and don't jump to any decisions because this is usually an extremely slow growing cancer which gives you time to do the research and make the best decisions for your lifestyle. Stay in touch!! - doug

IMO, as suggested start with the 3TmpMRI (3Tesla multiparametric MRI) not a 1.5T (the T is the magnet strength being used and a 3.0 is more powerful thus revealing lesions a 1.5 will not) even if it is out of pocket. DO NOT HAVE A TRUS biopsy because it is ARCHAIC and INCOMPLETE and samples very little of the prostate possibly missing higher grade cancers.

I'm putting all of this in my notebook! Thank you.

Reiterating what others have said. Get an MRI first so they can pinpoint the area of concern. They will also do the needle in a haystack for other areas besides the primary area of concern.

LemonPan: There’s a lot of notes and advice below. All good. But it gets confusing and at this stage shouldn’t be. I was same age, same PSA. I was warned to be thorough in the diagnostic phase and was later most grateful for that caution. Every data point will be critical in making later treatment decisions.

Get the MRI first. Not any MRI, but the 3T. This will tell you if there are lesions, how big and where located. If suspicious, they will be described as PiRADs 1 - 5.

THEN, get the biopsy. Make sure it’s the MRI guided biopsy (not random core biopsy). You may have to drive to center who has the equipment, this is a relatively new procedure. 20 months ago i had to drive 4 hours because the two local places offered only random core biopsies. A sample will be taken from each one of the suspicious areas found in the earlier MRI. There’s some discomfort, but it’s over quickly. You will get a local pathologist’s reading of those slides within a week or so.

THEN, send the slides to Johns Hopkins for a second opinion. It’s cheap and easy. They will know how to do it (if not, it’s simple). You will get their report back in a week or so.

You should be able to get this all done inside of a month. Before you make any treatment decisions, you want as much data as possible. That starts with family history, PSA history, the DRE (digital rectal exam - a good urologist may be able to locate trouble), and all the MRI and biopsy findings. It’s a pain and time consuming but you will thank yourself later knowing you didn’t skip anything. Best of luck.

(P.s. I’m west coast but would have gone to Sloan Kettering in NYC if it were in range. Among the best in the nation. Their on line website is stuffed full of information and well worth a look.)

LemonPan
LemonPan in reply to CaptAdam

A million and one thanks for this checklist. I've printed it out. (I know. I know. I could keep it on my phone but there's something about a piece of paper.)

My biggest concern right now is finding the right starting place because I'm not sure anyone in our area offers the type of MRI and guided biopsy you mentioned in your reply.

LemonPan
LemonPan in reply to CaptAdam

This question feels silly but I need to ask it. Is the MRI guided biopsy simply called an "MRI guided biopsy?"

I'm trying to find options for this biopsy in case Sloan Kettering doesn't work and can't seem to locate places that offer it (Other than Cleveland Clinic and a few others).

Perhaps I'm not searching for the correct term?

Cobb_
Cobb_ in reply to LemonPan

MRI fusion biopsy is another term for the same thing (MRI Guided) - its just that they do the MRI first, and then they use that MRI to "fuse" with the ultrasound and target the lesions as they do the biopsy. I don't know if anyone has recommended to you Dr Pat Walsh's book to you "Surviving Prostate Cancer' but it's a great book for all things prostate. I re-read chapters all the time to get a grip on the terminology.

LemonPan
LemonPan in reply to Cobb_

Ah. This helps! I was seeing the term MRI fusion biopsy but got tripped up when an ultrasound was mentioned. I thought, "Hmmm...I think we're supposed to avoid ultrasound." Now I understand.

Thank you!

LemonPan Sorry to hijack your post but this is timely for us as well. Wondering if the general consensus is that no matter where you have the biopsy done it should still be recommended to get a Hopkins read on the pathology? Our pathology/biopsy was done at Mayo Rochester and the urologists are saying its not necessary as they are already a pathology referral center and likely will not change the treatment options. Geason 7 (4 + 3)

LemonPan
LemonPan in reply to Cobb_

Not a hijack at all! That's a helpful question.

EXCELLENT POST by Currumpaw !!!

Anomalous
Anomalous in reply to Cobb_

Can’t hurt. I think JH is the only one that makes certain notations, like cribriform morphology or intraductal cancer. Because of one guy, Dr. Epstein. Will it make a big difference? Probably not, but its good to know.

Hey LemonPan!

An in bore biopsy using a mp, 3.0T MRI. No unnecessary cores should be taken as in a grid, or a saturation type of biopsy. That is the type of biopsy your husband should get done by someone with experience.

Fluoroquinolones should not be the drug used as a prophylactic if one is necessary. Rocephin or Cefdinir can be used rather than Cipro or Levaquin.

A link and excerpt:

"Fluoroquinolones and aortic aneurysms

Image: thecardiologyadvisor.com

Fluoroquinolones appear to increase the risk of aortic aneurysm and dissection by approximately twice the usual risk, although the risk is low. The reason for this increased risk cannot be determined, and the usual risk of aortic aneurysm can vary depending on the population.

FDA In Brief: FDA warns that fluoroquinolone antibiotics can caus…

fda.gov/NewsEvents/Newsroom...

fda.gov/NewsEvents/Newsroom...

Fluoroquinolones damage tendons, ligaments, joints and even soft tissue.

Excessive saturation type of biopsies and fluoroquinolones have damaged many men.

Currumpaw

I read lots of comments "only use Dr _" or only go to "___ Medical Center". There are lots of men diagnosed with PC in a year and a number of good choices of doctors and medical centers. What I would offer is go to a leading medical center and get a doctor who only does this type of procedure. I live in central PA and was treated at Penn State Hershey. My doctor is the department chair, a professor, active in the American Urological Association, and has several thousand surgeries under his belt. And he is a great guy too boot. I couldn't be more pleased with the process or the results. If you can go to MSK by all means do. If you can avoid a small community hospital, that would be my choice as well. US News rankings are pretty widely accepted as a guide to leading medical centers.

LemonPan
LemonPan in reply to CHPA

"What I would offer is go to a leading medical center and get a doctor who only does this type of procedure." <--This is my plan.

I'm glad for this message board because I felt that we could take some time to get it sorted who we want to see. My first instinct, of course, was that I wanted him seen *right away*. It's been helpful to research various doctors.

Clouds_69
Clouds_69 in reply to LemonPan

I strongly agree with the advice to get an MRI first. As others have said, it means the biopsy is guided, rather than random. An additional reason to do so is that if the biopsy comes first, you can't do an MRI for 12 weeks because the prostate has to heal from the biopsy. In my case, the biopsy came first - I didn't know about this website at the time - and I had to wait for my MRI before I could decide next steps.Good luck! You and your husband are much further along in your decision making than I was at the same stage.

LemonPan
LemonPan in reply to Clouds_69

Thank you for this info--and for the kind words!

As others have said biopsy is not rocket science so local is ok especially if you can get a quicker appt. Reading slides can be bit more difficult but it is always bedt to grt second opinion on those anyway

Johns hopkins is gold stsndard for second opinion

LemonPan
LemonPan in reply to Mufj

After doing a bit of research this weekend, we are leaning toward seeing a local urologist for the initial appointment and biopsy. His site mentions the 3T MRI that was referenced here. We will see what he has to say.

And I will be sending the slides to John Hopkins no matter where we end up.

Thank you!

Mufj
Mufj in reply to LemonPan

sounds like a good plan. myself had a local uro do my first biospy. After Dx got second opinion and wound up at penn medicine. On active surveillance had 2 additional biopsy and MRI and all things stable. Taking biopsy ample is not rocket science but inerpreting the slide is half art half science in my opinion and dr epstien at hokins is the gold standard. seconnd opinion there is about 300 which is well worth it even if you have to pay out of pocket-but ins should cover it.

check out link below you may find informative

MRI prior to biopsy is good idea to target suspiciosus areas but additional random samples ared advised.

you can get second ,third or fourth opinions at other centers on treatment options based on result so you can explore options.

best of luck and keep us updated

youtube.com/watch?v=pv532Je...

Hi Lemon,

Don’t know where you are in upstate NY but you can get a MRI and if needed a biopsy in Saratoga Springs ....Their imaging office is in Wilton, NY...need a script from urologist or RO...(i also live in Upstate) i was diagnosed at age 54 back in 2004...

LemonPan
LemonPan in reply to billy1950

We are in the Albany area. There's a doctor at St. Peter's that a few friends have recommended--he was on WAMC and spoke about his approach, MRIs, etc. That's who we're leaning toward right now.

And while I've felt pretty positive about things, today has felt a bit overwhelming. Thanks for sharing that you were diagnosed in 2004. I appreciate that!

billy1950
billy1950 in reply to LemonPan

Lemon,

Interesting to hear that the doctor from St. Peter’s was on WAMC...I felt that there would be good resources in Albany...

To continue from my previous response...

In 2004-5 i had 8 wks of radiation at Glens Falls Hospital. Treatment options for Prostate Cancer have changed a whole lot...My radiation oncologist at GF hospital was excellent. I placed a lot of trust in him and things went very well.

After having a MRI and a biopsy, both of them will give you and your doctors a lot of information in deciding what would be the best treatment to have! Second opinions are always good...

My best!

Billy

Go out and get a non- invasive scan right away.

You could consider an "In Bore" biopsy, if available.......more accurate. Only a few places do this......it's done inside the MRI.

I would consider Langone in NYC and Brigham and Womens in Boston.......both leaders in MRI.

Also take a look at this exactimaging.com/....Mt. Sinai in NYC is using it.

I would definitely get the 3.0 MP-MRI first. I didn't have any imaging facilities close to my location a year or so ago so I traveled 5 hours to Virginia. Since then MP-MRI's have become quite the standard for elevated PSA and my insurance company has no problem covering the cost. If yours does, the out of pocket expense at many imaging facilities is less than $1000. The Virginia location had me scheduled in a matter of days. My urologist always prescribes the MRI first and then will only do perineal biopsies (if the PIRADS score from the MRI is 3 or above). The number of infections and long term effects of TRUS biopsies are underreported and the MRI's are more accurate.

LemonPan
LemonPan in reply to Kevin1957

Yes! That's the plan.

Our primary care physician had mentioned the next step was seeing a urologist for an MRI and possibly biopsy. My mind definitely went a bit blank after my husband said the word "biopsy". At first, I assumed that the MRI and biopsy were a pair. I didn't realize that one could get an MRI and that test could, perhaps, rule out the need for a biopsy.

Thank you for taking the time to respond!

I wanted to update this thread in case someone has this question in the future and wonders what happened.

My husband first went to a local urologist. He was seen by the PA and the experience was lacking. They did not want to do an MRI and they were going to perform a TRUS biopsy. Thanks to the information I learned here, I knew this was unacceptable.

The PA also stated that she thought she felt a lump and basically told my husband that he had PC it was just a matter of "finding out how bad." This was shocking because our primary care doctor said there was no lump. (More about this in a minute)

The next morning, I got him an appointment at Sloan Kettering. What a difference!

We saw the doctor who looked at Greg's PSA history and ordered a 3T MRI. This showed one PIRAD 3 lesion. A transperineal biopsy under anesthesia will be performed by the doctor the week after next.

Because of COVID, we've only done tele-health visits. During the MRI follow-up, I asked if the lesion is what the local PA might have felt. The doctor looked quizzical. He stated that it was highly doubtful because of the location of the lesion. He said that DREs usually miss these types of lesions due to the location. Of course, he didn't come right out and say she was wrong but...I think she was. ;-)

Since we got the results of the MRI, I've scoured these boards to read about PIRADs 3 results. It does seem to be a "hmmmm". Could be something. Could be nothing. So now we wait for the biopsy.

Again, a HUGE thank you to everyone who posts here and who answered my questions. It's because of you that I realized the care at the local office wasn't what my husband needed.

I will post again once we have the results.

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