What do you wish you knew before your... - Advanced Prostate...

Advanced Prostate Cancer

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What do you wish you knew before your biopsy?

KMY28 profile image
54 Replies

I'm having my prostate biopsy soon. Can you please share your experience, what to expect before and after, what you wish you had known (or are glad you did) before the actual procedure? Candidly, does it hurt? No detail too small! Thank you.

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KMY28 profile image
KMY28
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pd63 profile image
pd63

Your bio has your diagnosis, how was this done because biopsy is the only way to find out

Jpburns profile image
Jpburns in reply to pd63

This is a good question.

KMY28 profile image
KMY28 in reply to Jpburns

See below.

KMY28 profile image
KMY28

Let me clarify what some of you have noticed. How can I have a diagnosis before a biopsy?! You're right. My journey so far has been a bit out of order. PSA levels rising, referred to Urologist who did a DRE, felt something, ordered a biopsy and an MRI. Just so happened that the MRI schedule came first, showed a lot, then ordered a PSMA. This biopsy is now to confirm what we're 99% is there, but also to do genetic testing on it for BRCA and to figure out as much as we can about the specific kind before making a plan with MO and RO. But why question still stands: how can I walk into this biopsy feeling the best I can. Thanks!

Tinkudi profile image
Tinkudi in reply to KMY28

My advice is listen to Tall Allen.

I know how intimidating and mind-boggling it is when you first get the PCa diagnosis and how you just blindly go by whatever the doctors say.

I am in India and the doctors here intimidated me in getting a biopsy done for my dad - I wish I had not and was able to follow what Tall Allen said as that makes total sense. But they made it seem I was doing a very risky thing by not doing it and refused treatment without it. One Dr did agree to treat without it but we were not comfortable with his bedside manner.

In the last 3 months I have realised Tall Allen knows more than most doctors seem to.

NanoMRI profile image
NanoMRI in reply to Tinkudi

The presentation of having a mastery of scientific writing that is nothing more than summaries of public information and personal opinions is certainly not a representation of a greater knowledge than most doctors.

Tinkudi profile image
Tinkudi in reply to NanoMRI

But what he says is very sound and logical no ?

NanoMRI profile image
NanoMRI in reply to Tinkudi

It is not my intent to enter a debate but in a fair and balanced sense I feel such comments as yours need a counter point - otherwise the namesake of this platform is not practiced.

Yes, the writings include common knowledge, common sense. But some of it is simply wrong. I no longer read these replies because the individual is not medically trained nor licensed, and he does not personally face metastasis. I am on this forum to learn of others experiences and to share mine - to unlock what we are not learning from doctors.

Tinkudi profile image
Tinkudi in reply to NanoMRI

I did not mean to start a debate 😊

Am here to learn too and do the best I can for my dear father

CAMPSOUPS profile image
CAMPSOUPS in reply to Tinkudi

You're doing fine. For your father too.

You seem to have a good sense and apply necessary filters when here on the forum.

NanoMRI profile image
NanoMRI in reply to Tinkudi

Hello Tinkudi, I didn't think you were and I simply wanted to state I was not looking for one :)

In this post of KMY28 we see one of the many disparities we face in diagnosing and treating this disease. If there were absolute answers the death rate from the disease, the number of men facing ADT/CR would be falling. Instead they are projected to rise.

Retireddoc profile image
Retireddoc in reply to NanoMRI

Thank you for your reasoned comments.

NanoMRI profile image
NanoMRI in reply to Retireddoc

kind of you; striving to learn to be ahead of this best, and hoping to share my experiences, my lessons, in a fair and balanced way. All the best to all of us!

Tall_Allen profile image
Tall_Allen

If you already know you have bone metastases, there is no purpose in getting a prostate biopsy. You should be getting triplet therapy, and if there are 3 or fewer bone metastases, prostate radiation.

prostatecancer.news/2021/05...

prostatecancer.news/2018/09...

I have had 3 biopsies. I found it very painful, and there is a danger of sepsis if transrectal. You don't need it for your therapy, so just say no.

allie2020 profile image
allie2020 in reply to Tall_Allen

I have had two trus biopsies, eight years apart. The first was w/o anesthesia and it was VERY painful, The second was with anesthesia and it was a walk in the park. I remember the blood in the urine and semen but recovery was uneventful.

Tall_Allen profile image
Tall_Allen in reply to Tall_Allen

Also, consider switching oncologists. There is nothing actionable to be learned from a prostate biopsy at this point, and you deserve an oncologist who understands that. You should get a germline genomics test (saliva or blood) and at some point you will want a biopsy of one of your bone metastases. If you're in LA, I can recommend good oncologists at Cedars-Sinai, City-of-Hope, and UCLA.

KMY28 profile image
KMY28 in reply to Tall_Allen

Who is your recommendation at Cedars?

Tall_Allen profile image
Tall_Allen in reply to KMY28

Edwin Posadas.

Maximode profile image
Maximode in reply to Tall_Allen

Good day TA, I’m starting to look for an oncologist at UCLA, who would you recommend. Dr. Leonard Marks is my urologist there.

JohnInTheMiddle profile image
JohnInTheMiddle in reply to Tall_Allen

Yikes! I had a transrectal prostate biopsy and the result was Gleason score of nine. The urologist or whoever it was was doing it went on for 15 minutes blah blah blah about what I don't know. And then 14 snips. Snip snip snip. You could hear it. And a slight pinch. Wasn't too bad. Fortunately avoided any infection.

But then they already knew that my PSA was over 1700 and I had mets to the spine and ribs and pelvis and lymph nodes etc. Fortunately ended up with triplet therapy! And now we learn there was no reason for the biopsy.

I didn't have any interesting genetic variations like BRCA. Can you get that without a prostate biopsy?

I'm thankful for how things turned out. It's kind of dizzy-making in the beginning. At one point we were packing our bags to go in, in the morning and then we got a phone call and they said don't bother. The next thing you know it was Firmagon on the way to triplet therapy.

Tall_Allen profile image
Tall_Allen in reply to JohnInTheMiddle

"I didn't have any interesting genetic variations like BRCA. Can you get that without a prostate biopsy?" Yes. You can only get germline (inherited) genomics from saliva or blood. It may be valuable at some point to get somatic genomics and other characteristics from a metastasis, but since that changes over time as genomic breakdown continues, it is best to get that when a new therapy is in the cards.

Tests like Decipher or Gleason grading give the risk of getting a met down the line. But if you already know you have metastases, that ship has sailed.

Timfc profile image
Timfc

I had three biopsies over a period of about three and a half years as my PSA continued to climb. I might be a wimp, but I found them unpleasant.

Yzinger profile image
Yzinger in reply to Timfc

they are awful - lets be honest.

Quarky profile image
Quarky

Agree with Tall_Allen about not having a biopsy at this point since you already know you're metastatic. My biopsy was extremely painful, so I chose another urologist when it came time to have fiducials implanted in preparation for sbrt, which is a similar procedure but with fewer pokes. There was significantly less pain during that procedure. I felt that the first urologist who did the biopsy didn't allow enough time for the pain killer to take full effect. He seemed rushed and in a hurry. I explained this to the urologist who did the fiducials and she waited a little after injecting the anesthesia. That seemed to help.

I wonder though, and this is for Tall_Allen, about having the biopsy in order to obtain a tissue sample that can be checked for BRCA as the op has mentioned, or for assessing the risk level as Decipher does? Would there be any benefit for having the biopsy done for those reasons?

KMY28 profile image
KMY28 in reply to Quarky

I appreciate the opinions but I am having the biopsy. Both my MO and RO want it to determine the exact nature of the cancer, to do BRCA testing on it, etc. I'm more curious about things like having to do a suppository before, what to eat or not to eat, what to wear, what to expect. So if anyone would like to chime in on those basics, rather than if I should have the biopsy or not, that would really be helpful. Thanks in advance!

Quarky profile image
Quarky in reply to KMY28

Understood. I included my experience to highlight what I thought made the difference in the pain level I experienced for the two procedures I had. One thing I forgot to mention is that the 2nd urologist, who implanted the fiducials, gave me a sedative which you might consider asking about. I'd also suggest asking your urologist to take the time necessary to allow the anesthesia to fully take effect. I did an enema before both procedures so that everything's all cleared out. I think it'd be good to stay away from any gas producing foods the day/night before the procedure. Beyond that, wear something comfortable, and don't be anxious when you see blood in your urine or stool post procedure. That's typical and will stop after a few days to a week. Good luck and take care!

MoonRocket profile image
MoonRocket in reply to KMY28

I agree with your medical team. Knowing as much as you can about your cancer seems to be the way leading Prostate Cancer doctors approach treatment.

NanoMRI profile image
NanoMRI in reply to KMY28

I did not have a suppository, made no diet changes, wore regular clothes. It is invasive, but women go through a lot too and more frequently. It will bite, literally and figuratively. This is a minor and pragmatically insignificant quick step in the battle with metastatic prostate cancer. Your doctors will advise on preparation, as needed. All the best for the long haul.

EdinBmore profile image
EdinBmore in reply to KMY28

For whatever it's worth, I agree with TA re not necessary to have a biopsy. However, that wasn't your question. My experience: being fearful of shitting myself while the doc is doing the biopsy, I made sure that I was super clean. That meant watching what and when I ate the day before, douching a couple of hrs before the procedure and then about an hour before. I had a trans-rectal biopsy; in fact, over the 7 yrs I was in active surveillance, I had 4 biopsies (as I recall). I'm surprised that there's anything left of my prostate! LOL

Initially, the doc numbed the rectal wall with an injection of lidocaine ( I learned later that this was probably not wise - the type of anesthetic - because I have afib and lidocanine can cause a rapid heart beat and flushing of the face). The insertion of the probe and "gun" was nothing for me; did not hurt at all. The "snips" of tissue were certainly uncomfortable and there were a few drops of blood afterwards. Nothing alarming to me at all. I wanted the doc to just get it over with but he liked to chat more than I cared for. "How ya doing?" "Only x more to go." "You're doing great." Blah, blah, blah. The whole procedure took 10 mins - maybe. I had "gas" afterwards as the doc said I would. So, you may want to use the toilet before you drive home. I was also given antibiotics to take a day before, the day of, and the day after the procedure. I did not experience any infection or complications from the procedure. Btw, I also had "fiducials" inserted into my prostate; again, trans-rectal. This was prior to radiation therapy years later. It felt like a mini-biopsy and was over in 5 mins. So, I guess I was lucky. Good luck to you.

EdinBaltimore

Saxophone-time profile image
Saxophone-time in reply to KMY28

I regret not having my prostate biopsy without anesthesia. My urologist only used a local anesthesia and it was extremely uncomfortable! I would have preferred to have it done with anesthesia like having a colonoscopy. I had my hip bone biopsy with anesthesia like my colonoscopy’s and I didn’t feel a thing.

I had to give myself a fleet enema a couple hours before the prostate biopsy procedure.

They gave my an injection of an antibiotic to significantly minimize and prevent the risk of infection since my biopsy was transrectal.

I did not have any food reactions. I suggest follow pre and post biopsy instructions closely.

I wore loose clothing such as sweatpants and slip on shoes with socks.

Ask questions, and don’t be afraid to make sure you understand the whole procedure. If possible, have someone there with you. It’s your body and you are in control.

Strong Everyday

💪🩵💪

mababa profile image
mababa in reply to KMY28

KMY28, I won’t comment as to whether or not to have the procedure since I’m just a plain ol’ structural engineer, but I can relate the experience.

My Urologist did not prepare me well for the experience. There was the routine, self administered enema they prescribe to be done a couple of hour before the procedure. And, I swallowed one, fairly potent antibiotic at the same time. This was to help guard against the obvious potential for infection. At the clinic, I had a 30 minute wait before being brought into the procedure room by two nurses where I was place on a table on my side—a more dignified position than I had imagined. In the room, it was just I and the doctor. He explained what the steps were, that his equip had a built in scanner to observe the prostate gland. He started with an implement that numbed the wall between the rectum and prostate. He may have been numbing the gland itself, not sure. From 1-10, I say the discomfort was 5 for the injections. But the stings subsided in a few minutes. Then came the sampling probe, where things began to go downhill. There were pronounced jabs (12 total) over a period of 10 minutes or so, that registered 5-8 on the scale. After the second sample, I had a warm flowing sensation throughout my pelvic and rectal regions. Because of my position and sheet covers, I could not see anything. However, after finishing with the sampling probe, he had me sit up and that’s when I saw blood—sort of everywhere. I was bleeding through the penis and out my rectum. The nurses reentered the room and, what had been a fairly discreet affair beforehand became an all persons on deck event. I was blotted down everywhere with absorbent towels. Blood clots were forming inside my rectum and urethra and clots emerged from both orifices uncontrollably. They fitted me with a diaper and cleaned up me and the floor, then directed me to the bathroom. More clots emerged while trying to urinate and I spent 20 minute wiping up more blood off the floor and toilet. Okay, by now you’re saying “enough!” I’m convinced the procedure inadvertently hit a vein somewhere. I sat in a new diaper and waited for bleeding to stop and then drove myself home. Later that day I was alarmed at not being able to pee. I felt there was a blockage in the urethra. Much later and with some effort, I passed a scary looking blood clot and was able to relieve myself. Thing improved from there. I ceased passing blood through the rectum but I wore diapers to bed for the next three nights. After a couple of weeks, the blood in my urine cleared up. What disturbed me most through this ordeal is that I didn’t receive a single follow up call from the clinic. I never quite forgave this doctor and only saw him once more. During my diagnosis he tried to hand me his business partner’s card, saying he’s a good surgeon that I can consult with. I laughed out loud and informed him that no one is getting close to me with a knife. He apologized for my experience. I believe my case was unusual and it shouldn’t influence your decisions, but you asked for details so I obliged. Sorry for the length of the post—but your query jarred some bad memories loose. Good luck and best wishes in your fight against this beast.

KMY28 profile image
KMY28 in reply to mababa

Oh my. I'm both grateful for your honesty and sorry for your experience. The good news (I hope) is that I am having a transperineal guided biopsy. My understanding is this is a different experience from the transrectal procedure. Less chance of infection and complications. Still no walk in the park, but I think I'm getting the better option of the two?

mababa profile image
mababa in reply to KMY28

Yes, from what I’ve read since, it’s the safer option. I was never offered that choice. Best wishes!

NanoMRI profile image
NanoMRI

What to expect before and after? Before, lots of disparities in opinions and anxieties. After, as I was present for the birth of my two children, IMO these are a walk in the park compared to child birth.

You are 52 - I was 57. I was compelled to know as much as I could. You have had a PSMA - these were not available for me ten years ago at the time of my Dx. I did have genomic testing using biopsy samples, and found them very helpful.

I still do not face bone mets - as far as we know. If I could have a do-over, and I believe even with a couple of bone mets, I would again have RP but also with what was my third treatment, extended pelvic lymph node surgery using frozen section pathology method and then zap the bone mets.

I fully understand there are members and of course doctors who speak against my experiences and thinking, but, I share in case you are interested in unlocking all ideas and possibilities. My intent has been and continues - to defer long-term ADT/CR and chemo for as long as possible. Hope this helps! All the best!

Don717 profile image
Don717

3 TR biopsies over 18 months, no issues. Just the usual blood in ejaculate as mentioned. If your biopsy is TR, make sure you follow the directions/prep. Good luck to you and I agree....I'd want to know the gleason and tumor type/genomics perhaps for some consideration of treatment on your journey.

MoonRocket profile image
MoonRocket

My biopsy was painless. Discuss with your medical team the need for a biopsy. Watch this for insight on how leading researchers apply research to practice.

m.researchtopractice.com/no...

CancerConcierge profile image
CancerConcierge

I can share about my husband’s biopsy experiences.

He has had TRUS biopsies, a MRI Guided TRUS, In Bore MRI guided biopsy, MRI Fusion biopsy, all Transrectal, than last year he had a Transperineal MRI Fusion biopsy .

Local numbing was done for all of them.

He had blood in his urine afterwards for all the transrectal biopsies . He had to take antibiotics before, and had sedation for one Transrectal biopsy, which helped of course with pain.

He found them all painful (except for the one with sedation.) and dreaded them. His recovery was quickest after the Transperineal biopsy and he had no bleeding the day afterwards .

Transperineal biopsy would be the safest in terms of infections and sepsis risk.

If you can , ask for sedation.

It will be a relief when it’s over

Benos123 profile image
Benos123

I've had umpteen Trus biopsies ( with no sedation offered) along with three Template biopsies that were under GA over the past twenty five years.

Yes they all caused blood in the urine & semen but never an infection.

Overall the trus are just a little uncomfortable and literally just a pain in the bum and whilst the bruising after the templates was significant and lasted for well over a week or two.

As a former serviceman I used to console myself with these words that were rightly or wrongly attributed to Dads Army "They don't like it up em Capt Mannering"!!

markprince profile image
markprince

the best way I can describe the biopsy I had is it felt like they stuck a BB gun up my butt and pulled the trigger 12 times. After the first trigger pull, I told the Doc, "Hey man, you gonna have to holler fire in the hole or something before you pull that trigger each time".

that being said, the biopsy was not nearly as bad as I had expected. At that point I had a PSA of 7.6 and a DRE that said I the right side of my prostate was much firmer than left side but no lumps or swelling and I was asymptomatic. Turned out I had 6 Gleason 7 samples from the right side of the biopsy.

Quarky profile image
Quarky in reply to markprince

Your first paragraph gave me a chuckle!🤭

vintage42 profile image
vintage42

"... Candidly, does it hurt?"

I had read enough accounts to know it could be very painful for some people. prostatediaries.com/2010/05...

When the nurse informed me that my PSA required a biopsy, she said they would not get an MRI beforehand and so it would be blind, in the office, in the rectum, with only Lidocaine jelly. I asked for an MRI and took it to another doctor who said it confirmed and located cancer, and gave me a biopsy in the perineum under Propofol.

CousinGrandpa profile image
CousinGrandpa

Mine was done without anesthesia and it was very painful. Fortunately it did not last long.

What did I wish I knew then? Once you receive your diagnosis, ask for psma pet scan to see if you have metastatic disease. If so, skip surgery as it has nasty side effects. Explore other treatments, including radiation or doublet or triplet therapies.

ELOfan profile image
ELOfan

BIOPSY Prep: They told me to STOP all blood thinners (Ibuprofin, Naproxin), fish oil and not eat fish 5-7 days prior. I had to switch to ADVIL. I wore sandals and drawstring pants, underwear that could absorb any rectal blood drips after biopsy. Morning of had Enema to clear colon for best ultrasound view across colon to prostate. Brought phone and earbuds so i could listen to music low so I could still hear questions. They said to eat breakfast and stay hydrated, especially afterward, took all prescription meds as usual. Have someone DRIVE you there and home. From appointment start til we left it was about an HOUR.

The exam table was firm and uncomfortable and I had to lay on my left side, they gave me an injection of antibioltics. They gave a pillow for my head, and I asked for a second pillow to hug. Wish I had bought a few clean, long beach towels to lay on if you are skinny like me, if your body has more padding you might not need that. Ask how long til pathology reads the samples and how long to stay off blood thinners.

At home: Drink 8 glasses of water a day, no alcohol, no caffeine. Take temperature and watch for any signs of infection or rectal bleeding. Bottom will be sore so no riding mower, bicycle nor motorcycle. Good luck

KMY28 profile image
KMY28 in reply to ELOfan

Exactly what I wanted to hear. Thank you!

Conlig1940 profile image
Conlig1940

In short it's a walk in the park . I'm heading towards 85 soon and had two " Transperineal MRI Fusion Biopsies " at age 84 . Simple , no fuss , no pain from 5 snips the 1st time -- 16 snips the 2nd time . The urologist will determine the number of snips . A local numbing only around the anus / perineal . I was awake as the Urologist counted the snips .

Some fear a Biopsy - I bet they never had a tooth out . Finally , it's normal practice today to have an MRI - PRIOR to your biopsy . And yes go for a Transperineal NOT a Transrectal for obviious reeasons . I had a little , emphasis on little , amount of blood in my urine for less than a week .

If your medical team insists on one -- Go for it .

T911 profile image
T911

What I wish I knew earlier- I was told to expect some blood in urine and semen after biopsy. Woke up middle of night after transperineal biopsy with tremendous urge to urinate. Could not pass a drop and in extreme discomfort. Was able to push out a blood clot with great effort. Looked like an alien crawling out of my urethra. Repeated several times over the next four hours. Every trip to the toilet was an adventure. Half the problem was the fear I experienced until I was able to get a hold of someone at the hospital that said clots can happen.

mjtct61 profile image
mjtct61

Interesting experiences as to pain. I had my biopsy performed after the MRI showed some reason for it. Seems logical to perform the MRI prior to biopsy. Apparently some labs provide images or details that allow the urologist to perform a guided biopsy versus a random sampling so inquire on that. I will say the worst part of the rectal biopsy was the initial injection to numb the area. After that didnt feel a thing. I did get instructed on diet and provided with an enema for rectal flush. After the procedure I had no real discomfort or infection but did see blood in semen but that flushes after a couple times.

As I decided on radiation treatment there was a transperineal insertion of fiducial markers but I was knocked out for that. Some discomfort in that area for about a week.

There does seem to be varied procedural experiences so best to keep asking and learning. This forum has been an invaluable source of experiences and information that doctors dont always provide. Best wishes.

janebob99 profile image
janebob99

Two comments.

1. Get an MRI first, so that they can target the tumor (if any).

2. Wear headphones or earbuds and listen to loud music during the procedure.

Mine was quite uncomfortable.

KMY28 profile image
KMY28 in reply to janebob99

Earbuds and loud music is great advice!

Eadgbe profile image
Eadgbe

I had one transrectal before cancer diagnosis with PSA at 7. Dr. said some cells were suspicious. 4 months later psa 13, a directed transrectal biopsy that went septic. After radiation and 6 months of Eligard, I may actually be cured since it was not advanced beyond the prostate. I don't think I would have a transrectal biopsy again. I understand a transperineal is safer from sepsis but you need someone experienced. The first was with valium - it hurt a little but it was tolerable. The second was with nitros and it was about the same. The third time I was on the table was getting a barrier put in (transperineal) for the radiation. I used nitros again. That made me vocalize, but it was only a few seconds. You gotta do it. It won't make you cry.

cpl901 profile image
cpl901

Trans rectal has a risk of insfection. It was painfull after couple of houres when the local anestetic stop his work, and during the first night. But the day after was ok. What I would have like to know before is : that a genetic test could have be done on the material. I got just my Gleason score 7, and that i have prostate cancer and i have to choose a way to cure. I wasnt prepared psychologicaly to have any result of a biopsy, because my PSA was not that high (about 6) and my MRI showed PIRAD 3, so nothing very alarming and i imagined that it wasnt alarming. In fact it wasnt alarming but it was shocking having the diagnosis of prostate cancer. I wasnt psychologicaly prepared to get any result of a biopsy. My urologist may be didnt imagine the shock that would come with the diagnosed (on the phone). I was 56.

j-o-h-n profile image
j-o-h-n

Back in 2002.... Instructions/procedures were:

1. Remove your pants and your underwear.

2. Put on this blue and white striped dressing gown (open in the back).

3. Lay down on the table.

4. Paint your butt with lidocaine.

5. Are you ready?

6. Ready when you are W. B.

7. Wait just a moment,, we have to get the film ready for your youtube showing.

8. POW..... what the fuck was that?

9. Oh just practicing shooting the bear at the penny arcade.

10. 11 more POWS, you must be a lousy shot Doc.

11. That's what they all say.

12. Put your clothes on and get out of here, They're waiting for me at the19th hole for drinks.

13. To tell you the truth, it was a walk in the dark..........

Good Luck, Good Health and Good Humor.

j-o-h-n

diatom profile image
diatom

I had 2 biopsies

Didn’t think it was that bad

SteveTheJ profile image
SteveTheJ

It hurts A LOT and furthermore, the urologist (otherwise incredibly competent and appreciated) did not apply enough lidocaine. I felt all of the last 6 cores they took. See if they'll give you propyfol. Otherwise, plan on sitting on an ice pack with painkillers.

You're getting something as big as a battleship rammed up your bum and they're going to take 12 cores BANG BANG BANG etc. It's not fun but is totally necessary.

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