HealingWell
Search Close Search
☰

Just found out my biopsy was cancerous

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/26/2018 12:40 AM (GMT 0)
I have not been here for a long, long time and used to post about chronic pain (now under good control with the use of buprenorphine-Subutex)
I have had PSA tests as high as 9 but I have a lot of infections and a repeat after antibiotics came back 4.5 then I go to 6 then 5 then 4 and so on but usually within 3.5 to 6.5 anyway I relented and had the biospy last week. The doctor suggested a cryotherapy with argon gas to freeze it. All he said was my cancer was a 6. I am not sure and wish he had told me more but he gave me a book which led me to believe it is a Gleasp0n score of 6.

I will stop by to read posts here to get more info-I am scared of course. My brother died two years ago of lung cancer.
I live upstate NY and in the city so I had it done in a smaller town-Poughkeepsie NY but I made a second opinion with a Doctor G.Decastro of New York Presperyterian hospital and hope to learn more
Thanks for any input

Glen
Posted 6/26/2018 12:46 AM (GMT 0)
I should have read the info on posting first-sorry If I broke rules. I am just kinda scared and after reading about posting, very ill informed about the kind of PC I have so at least I know the questions to ask-Gleason score etc..
Posted 6/26/2018 12:52 AM (GMT 0)
Gleason 6 is the lowest detectable grade of prostate cancer. It grows slowly and generally never progresses outside of the prostate itself. Men with G6 cancer can usually grow old and eventually die from something else, not the prostate cancer. And as long as your PSA: a) stays below 10, and b) goes back down after it goes up, then it is usually NOT caused by cancer.

Of course, this is a generalization and none of us here are doctors (as far as the rest if us know) so you are better off getting MORE information directly from a doctor, and preferably one who has more experience with prostate cancer, such as Dr Decastro. Good luck to you!
Posted 6/26/2018 12:57 AM (GMT 0)
Glen,

The good news is that a Gleason 6 is the lowest grade of detectable prostate cancer you can have. The next step--and your move isn't a bad one--is to get to a urologist who can better explain things. By the way, there isn't anything wrong with your post. You've had a history of infections and bouncing PSA--that stinks, but you're hopefully past that.

Here are the big things to do:

Get a written copy of your pathology report. It will tell you how many samples they took (usually 12), and what the finding was on each sample. You have a Gleason 6. How many samples did they take (how many times did you hear the snap?) How many samples are positive? 1? 4? all 12? some other number? And, importantly, it will say something like 10% or 50% of the core was positive.

If you want, type in the entire report on here, and we'll help you interpret it.

Second, ask your doctor to have your biopsy slides sent to Johns Hopkins for a second opinion. Your insurance will probably pay for it. With the Johns Hopkins opinion, you'll know for sure what you're dealing with.

Third, try to calm down. If you're a Gleason 6, you're probably a good candidate for Active Surveillance--which means that you keep having regular PSA tests, and another biopsy in 6 months or a year--and basically keep an eye on things. If something changes, THEN you take significant action. For about half the men on AS--they don't do anything but monitor for years. The good part is, you have no side effects, no incontinence, no issues--and, a huge study for many years says that there is NO difference in long term outcome for AS versus immediate treatment.
Posted 6/26/2018 1:07 AM (GMT 0)
Wow! I am actually tearful and grateful I came back to healingwell. I thank you roblee and halbert (cool name by the way)

I looked up Dr Decastro's pedigree and he is Harvard trained with many papers published and a few awards so I feel rather confident he will fill me in on what is best.

My brother was very much my dad by proxy due to my father having bi polar disorder and I took his death very hard so the word cancer caused much alarm and dread.
I think I'm gonna be alright. I will see the doctor July 9th and report back-thanks again

Glen
Posted 6/26/2018 3:28 AM (GMT 0)
Glen, I am also new here but for what it is worth I will give you my experience as I too was a G6,
I had also had PSA bouncing around and went to see a urologist in November 2017, who immediately did a biopsy which came back at 2 positive cores out of 10. The important bit was that the most involved core was 20%, with no perineural involvement. The PSA test was 4.5. I was 59 at the time.

My Urologist said that I should go on active monitoring as in 70% of men the cancer would just stay like that for years and as halbert has said I would probably die of something else in the end.

My next PSA test result was 4.25, even lower than the one taken at the time of the biopsy. The Urologist said that that was fantastic.

At the time of my next Biopsy they wanted an MRI done as well just in case they could pick up anything else and have a directed biopsy. That was, unfortunately, the turning point for me as the MRI picked up a lesion on the opposite side and the repeat biopsy showed an increase from 20% to 50% on the most involved core. This was the point where I was given to option to do something about it as it appeared to be moving and spreading to other parts of the prostate, or risk it spreading. I had the robotic-assisted laparoscopic prostatectomy (RALP) surgery 18 days ago and the histology shows that it is probably all gone, the proof will be in the PSA tests over the coming years. There are many treatments out there these days, in my case, it was really narrowed down to one by the experts. Do your research and speak to the experts - I am sure you will be fine as it has been caught so early as mine was. Hopefully, you will be part of the 70% group and do nothing but monitor it.
Harry
Posted 6/26/2018 9:55 AM (GMT 0)
Thanks Harry. My age is 65 now but the PSA has been up and down for at least 10 years. I understand just because the 6 score is better news then a higher score, I am in the clear but I do feel a lot better then I did a week ago.
I must add an important item. I have been hypogonal for 20 years due to opiate medication. I have been on testosterone injections for 15 years or more. From all I read. It is mixed as to thos being a cause or worse, it may be feeding the cancer.
I just gave myself an injection 6 days ago.I will ask Dr G. Decastro his opinion but pray I am allowed to stay on the testosterone injections. My quality of life suffers without it. The impotence being but a small part of the suffering. Depression and timidity the worst of it.

I will write after the second opinion on the 9th.
Glen.
Posted 6/26/2018 6:17 PM (GMT 0)
Glen - be very careful which docs you talk to about T therapy. Many of them are not up to date about the newer learning about the impacts of T therapy on PCa. I suggest that you google “Saturation Theory + Morgentaler.” Dr. Morgentaler is associated with Harvard Med, and has spent about his last 20 years studying the impact of T on PCa.

His Saturation Theory applies primarily to low and intermediate risk patients like you and me. He has found that for such patients, there is no reason to withhold external T before, during or after treatment for PCA. The theory is that prostrate cancer cells do not need much T at all to “do their thing.” In order to have any impact on the cancer, your T level would need to be down to 50 or less - what is considered “castrate level.” Or to put it the other way, as long as your T is above castrates level, cancer will do what cancer does. They have also shown that depriving the patient of T is mainly of benefit to the high risk or unfavorable intermediate risk patients - something you do not seem to be.

Another thing Dr. Morgentaler and I agree on is that the human body cannot tell the difference between T that it makes internally and T that we buy at the pharmacy.

So, there is no reason to deprive low-risk patients of their T, whether it is manufactured by their bodies or bought at the drug store. If any of your docs tell you that they would stop your T replacement, ask them about the Saturation Theory. That stuff that giving T to a PCa patient is like pouring gas onto a fire is from a study published in 1941 which started out with a sample size of 3, and ended up with only 1 remaining participant.

Removing T from a high-risk patient makes sense, but for the others. . . Not.
Posted 6/27/2018 1:38 AM (GMT 0)
Thanks Paxton
I have read a bit of pro's and cons but to me what is very important is quality of life. For a couple of years I felt depressed and for lack of a better word-Timid. I felt fearful and had a vague feeling that something was not right inside me. I found a doctor who touted T by the name of Barry Gordon. He took my blood level and while I do not remember it, it was about as low as could be. A week or so after being given Testosterone, I felt "alive" again.

I have been on large dose opiates for years and it has screwed my system. Anyway I hope to continue with my injections-I give myself 200mg every two to three weeks IM

Glen
Posted 6/27/2018 9:37 PM (GMT 0)
Glen,

Make sure your doctor knows that you've been supplementing T for a number of years and that you very much want to continue. As Paxton said, the effect of store-bought testosterone on your body is the same as natural testosterone made by your testes. When a patient is diagnosed with Gleason 6 disease his doctors won't generally give him drugs to block testosterone production and there's no reason a newly diagnosed man who supplements to normal T levels should be required to stop.

Gleason 6 cancers can usually just be monitored, often for years, without monkeying with a man's hormones. You've been supplementing for long enough that making you stop your T shots would represent monkeying.
Posted 6/27/2018 9:45 PM (GMT 0)
Hello Swan, agreeing with what others have said, I suggest that in advance of your next appointment you read up a lot on prostate cancer. Learn what Gleason scores mean. Learn about surgery and radiation and active surveillance. Pay close attention to the side effects of each treatment option. The more you know going into the meeting with the doctor, the more fruitful the meeting will be, and the better equipped you will be to ask questions and understand the answers. If you can, take your spouse or a friend or relative to the meeting, and have them take notes.
Posted 6/27/2018 10:01 PM (GMT 0)
Thanks to you both

I have read about PC now for hours and there is a wealth of information.

I have many questions prepared now but I'm sure you all will understand my lack of questions after first hearing the biopsy was cancerous. I was kinda in a emotional shock!

Things I fear most about surgery is of course any further damage that may cause either losing my ability to hold urine and having to wear a catheter. Impotence happens to not be a big priority sad to say because due to several factors (diabetes, back surgery, massive opioid medication use and hypogondalism) I have not been able to have maintain an erection enough to have sex with my wife. My wife is 65 like me and has lost interest in sex so it is not a major issue-we always say if she recovers her urges we can deal with the various methods of getting an erection (inplants etc) but it is not likely we will both have decent libidos.
We both burned that candle at both ends for years so we are not upset about our current lack of libido.

Anyway I appreciate the postings and have read a great deal. When I get a copy of my medical records I'll share the numbers and such.

Glen AKA Billypilgram
Posted 7/10/2018 4:07 AM (GMT 0)
I had second opinion and got records

In a nutshell, Dr DeCastro said I have non aggressive cancer Gleason scale 6 (3-3)
He said his only real concern that makes this 99% a case of AS (watch/wait) is that there are 6 specimens all on the left side-"left base" 6 (3+3) "20" "left mid" 6(3+3) 10 "Left apex" 6 (3+3) 15
"left lat base" 6(3+3) 30 " Left mid" 6 (3+3) 20 "left Apex" 6 (3+3) 5 My last PSA was 6.0 which was a little lower then the one before which as 6.7 (the Free PSA was 0.41) The doctor said active survailence is certainly a choice and said I may do well with an MRI

Doctor DeCastro does not think Cryoablation is the way to go but will refer me if I choose. He wants me to see a radiological oncologist just to get an idea of what they can do (brachytherapy or external beam)

He will continue as my new doctor and wants to see me in January (six months)
Sadly he is of the "school" of testosterone replacement as a bad idea and suggested I discontinue my injections (This I most likely will do but if my quality of life suffers too much I may choose to buck the odds)

Lastly, after the doctor gave me the copies of my biopsy and notes from Doctor Rahman he said "Don't worry you will be okay"

I did notice on the doctors note that he did or at least me wrote that he did, suggest AS as a choice (I thought he went right to cryotherapy as my best shot)

(by the way I am not sure I am giving the full results as there are a lot of numbers etc but the cancerous cores have a value written as "FTI" or "PTI" even with a magnifyer I cannot make it out but the numbers on each core that was cancerous are 20,10,15 then 30,20,5 This was in the diagnostic map (left side had 6 rectangles each with a black end some longer then others-the right had round ones showing they were benign.

I do feel much better and will see where this ends up. I hope I can get my values down and upon my next biopsy, have it come back with little or no changes. (I fear an MRI but maybe an "open" one with a couple of valium's to calm me, may work-I am extremely claustrophobic)

I hope I gave enough information so others can understand.

Glen AKA The swan AKA "Billypilgram"
Posted 7/10/2018 9:13 AM (GMT 0)
Hi Glen
Also being brand new in this PC club, I have also been doing many hours of research. Something I have read recently said that if your T level is naturally more than 100 then extra T will probably have little effect on the cancer. Apparently, the cancer only requires very little T to get it going. From what I remember levels between 100 and 300 don't make much difference to PC - but I stand to be corrected.

As I said before I was on the watch for 6 months and was told that only 30% of men have a problem if you are at G6, but it really pays to keep a very close watch on it. I was unlucky to be part of the 30% where it started to move quickly.

As far as your fear of the catheter goes, it is a little awkward but not in the least painful and really not a problem. Incontinence is a real pain and what I am currently troubled with, but it appears that all but about 2% get through it. I am just getting on with it and trying to be positive about it.

I also had the MRI about 2 months ago. I was put through the tube, but it's not like it is totally enclosed. My head was just about out the other side and I could see out both sides. For me, it really wasn't at all stressful. The worst bit by far for me was walking into the hospital on the day of the surgery. I had spoken to the surgeon about my nerves before surgery and they were great. I was only in the hospital for about an hour before I was asleep and most of that time was busy with the nurses. For me, it really paid off telling the surgeon of my fears. Anyway, hopefully none of that will matter for you.
Think positive and as your Dr said everything will be ok.
Posted 7/10/2018 10:45 AM (GMT 0)
Glen,

There is a terminology issue here: AS is not the same as watchful waiting--AS has clearly defined protocols, such as a follow up biopsy and MRI, regular PSA tests--in other words, ACTIVE is a real thing.

That being said, even with all your positive cores on one side, the G6 overall does qualify you for AS. It's not a bad idea to do some research into your future options if needed, but take care that you don't slide down the slope into treatment that may not be needed.

Did you have your slides sent to Johns Hopkins for second read?
Posted 7/10/2018 11:10 AM (GMT 0)

halbert said...
Glen,

There is a terminology issue here: AS is not the same as watchful waiting--AS has clearly defined protocols, such as a follow up biopsy and MRI, regular PSA tests--in other words, ACTIVE is a real thing.

That being said, even with all your positive cores on one side, the G6 overall does qualify you for AS. It's not a bad idea to do some research into your future options if needed, but take care that you don't slide down the slope into treatment that may not be needed.

Did you have your slides sent to Johns Hopkins for second read?

Glen, Halbert said pretty much exactly what I wanted to say. So get those slides sent off to Hopkins and make sure your AS is "active"...hopefully you will simply manage this as a chronic condition and have a long life w/o side effects of cancer treatment.

Jim
Posted 7/10/2018 12:20 PM (GMT 0)
Glen - You're in a tough spot. You have a doc you seem to like and trust, yet he is guiding you to do something that you believe may have negative impacts on your quality of life. I do not know what I would do in that case. The one RO who counseled me to stop T ("That's just what we do.") is not my doctor. I found another RO who was willing to learn along with me, and I am thrilled with the outcome.

I don't want to me the wet blanket, but maybe a second opinion on T is in order? After all, it is YOUR life.

P.S. In my own experience, after using T supplements for over 6 years, I could not/would not stop it unless I was in a life-or-death situation and neither your G6 nor my G3+4=7 are that bad.
Posted 7/10/2018 3:12 PM (GMT 0)
Thanks for the information everyone.

AS and watchful waiting are indeed different. The problem is I was not sure how to spell surveillance at the moment I wrote my post but tried anyway after I confused the issue. Anyway, how do I go about sending the slides to John's Hopkins? My doctor sent a read out not the actual slides. Does it cost much to send them?

I will see the RO and ask him about the testosterone. I kinda wimped out when Dr Decastro said no to testosterone and did not put up a "fight" In my head the thought was to ignore this advice followed by a "maybe I'll stop for a few cycles to see how it effects me" If the past is a good indicator then I already know what will happen-I'll get sad then depressed and then "timid and fearful" Hard to explain but when my levels are in their natural (very low-like 125 ish) range, my fears increase tenfold-I'll be afraid of stepping on Con Ed (utility company) manhole covers thinking they may be energized,crossing on the green only even if no cars are coming, elevator fears increase,a strange fear walking that if I bump into a person I'll harm them because I am kinda big and a general feeling of "doom" comes over me-not to mention the little libido I have is gone.

The mentioned issues above is the polar opposite of my usual easy going fun loving self. It seems all my mild fears become magnified.

So I suppose I still have not made up my mind and I just injected a couple of days ago-I may just use what is left-about two more injections, then make my decision.

Back the Hopkins, what can they tell me about the slides that is not already written on the report?

Glen
Posted 7/10/2018 4:36 PM (GMT 0)
Reading the biopsy slides is somewhat subjective and it's always a good idea to have a second person read them and give an opinion. JH are experts on reading prostate biopsy samples and are considered the best in the business. Not every pathologist reading your slides is going to give the same report.

Determining the Gleason score of a cell requires some qualitative judgements that not all pathologists are expert on. JH does it day in, day out.
Posted 7/14/2018 4:54 PM (GMT 0)
Thanks, I was actually wondering what it is they look for between cancer and normal cells and how the rate how "aggressive" it is. I will google that and check out any post's here that explain it.

I'll also google "How to send biopsy slides to other pathologists" I assume there is a charge but if reasonable, I will pay it.
Speaking of paying, I have a medicare HMO here in the mid-Hudson valley and they cover a lot of costs but hardly enough for a person with my income. I paid $3,000.00 in prescription co-pay's last year and may pass that amount this year. Thank God I have my wife to assist me with payments or I'd have to choose between gas, food etc or medications. I am actually not complaining (well maybe a little) for me but more so for those folk that live on social security alone. How in the world can they pay rent, food etc and these sky high prescriptions costs?

Anyway, I digress, I see the radiological oncologist at Columbia/NY/Prespyterian hospital Monday. It will be informational only at this point. My doctor thinks I should know my options.
What had me thinking was why he does not like cryotherapy as the first line procedure? He seems to be following the older thoughts on this method ie. It is for when radiation fails. My first urologist thought cryo was my best option and I've read that is being used as a first option. That and his dismissal of the use of testosterone. Maybe I did not make it clear that I have opioid induced hypogonal syndrome and have very, very low natural testosterone.

Anyway, I'll mention these two concerns tomorrow but will be aware as a radiation doctor, he may have a bias against cryo.

I'll post after the appointment Thanks

Glen AKA The swan AKA Billypilgram (and bear) Just a few nicknames and handles smile

Gleason score (3=3) 6 PSA July 6.0 (has been as high as 7.4 during infection but usually between 4-6)
Free PSA 0.41
On testosterone replacement since 1997

Post Edited (theswan) : 7/14/2018 11:05:59 AM (GMT-6)

Posted 7/14/2018 5:36 PM (GMT 0)
Glen, the confusion you're experiencing is exactly why we suggest people get themselves to significant research type centers, particularly for the less common treatments (cryo is one). There just aren't that many experts in those modalities.

In general, we would suggest folks with your level of PC, at the G6, relatively low volume samples, should seriously consider AS. As far as the testosterone supplementation goes, that's an open issue in PC world, as you have gathered.

I'd be one who would probably suggest, especially with the testosterone issue, that you try to hold off from aggressive treatment for as long as possible with a good AS program. Which will generally require an MRI based biopsy in a few months, and regular PSA tests to let you know if something changes.

My case was a G6 at diagnosis, and I was living in an area that made a focused AS program difficult (lots of rural distance involved). I chose to have RALP, and my post surgery pathology came back as G7--one of 15% or so that see a higher post surgery pathology than the biopsy. This is why we recommend a second read of your slides-and johns hopkins wrote the book.

Let us know what the experts at Columbia tell you. The standard radiation therapies (brachy and EBRT) are almost certain to cure you.
Posted 7/14/2018 5:48 PM (GMT 0)
I deleted my post because I see there are now open 3t MRI's. When I checked about 3 years ago, I could only find 3t wide mri's, not 3t open mri's.

Post Edited (richh) : 7/14/2018 11:57:15 AM (GMT-6)

Posted 7/14/2018 6:31 PM (GMT 0)
Thanks Halbert

I will report back. I will talk to my family doctors office staff about getting the slides sent with help of insurance they are very helpful and often take the bull by the horns and take care of things.
AS is where I stand and imagine I have to suck it up and get an MRI for better overall data as to size and such of the cancer. As I suppose most people, I have no symptoms other then having to go more often then most,weak stream and feeling like I'm never quite finished going.

I still have 2-3 injections in my bottle of testosterone and will finish that and to be frank, may continue replacement until or unless changes occur in my cancer. From what I have read it is not the testosterone itself but what it converts to I think it is "Dihydrotesterone" or something close to that. I really hate the way I feel off the testosterone so I will stay on as long as possible.

Must be beautiful living where you are. I live in Manhattan 3-4 days a week but each week come to the mid Hudson valley (Wappingers Falls south of Poughkeepsie) for 3-4 days to recover from the pace of the big city. Would love to criscross the nation to see the rural areas have only been on the coasts and a wee bit of Arizona.

Glen
Posted 7/14/2018 6:36 PM (GMT 0)
Halbert

I checked your info and see you are from the Philly area. Last year we went by that way going to Strausburgh PA to visit with the Amish-my wife always wanted to go and I am a train buff so it was a wonderful trip and certainly God's country. Things are quite spaced apart more so then NY
Posted 7/14/2018 8:40 PM (GMT 0)
Gene, when I was diagnosed and treated I lived in rural east-central Illinois, home of corn fields and hog farms. I now live in suburban Philly. I have a daughter who lives in Brooklyn and works in Manhattan.

Your symptoms, for what it's worth, are more typically due to "old man prostate syndrome" (BPH). G6 in particular is asymptomatic unless you have a HUGE tumor in there--and your biopsy doesn't show that at all.
✚ New Topic ✚ Reply
12