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Posted 1/12/2019 5:01 PM (GMT 0)
Hi all,
Thanks for the great forum, I've read and learned a lot. You all are amazing.
I may be early joining this forum but I decided to jump in anyway, i hope i don't annoy or offend.
My head is spinning so i'll just start my rambling now. Thanks for any feed back.

First, I have not been diagnosed with PCa.
My questions for the group revolve around a referral for a biopsy i've been issued due to high PSA tests in the last 3 mo. Sorry if i'm jumping the gun, i'll attempt to keep my ?s related to the biopsy process since that is the only real thing looming/imminent. I'll have to play the hand i'm dealt from that procedure but i'll attempt to not cross bridges i'm not to yet (its hard, i'm freaked out)....

I'm 45 yo. Married and father of an 11 yo and 8 yo. I'm in excellent physical condition and very active. I've been experiencing diminished urinary performance for a number of years but always chalked it up to nerves or dehydration or poor sleep habits or..... My father had PCa at 55 yo and had successful surgery. Unfortunately, he passed at 57 from a different disease. I miss him a lot.

about 3 mo. ago i discovered a small amount of blood in my semen during some alone time I had while the wife and kids were away on a trip. I scheduled a doctor's appt. for the next day. I'm a Kaiser Perm member (most of my ?s relate to KP.... see below).

My doctor performed a DRE and ordered a urine (negative) and PSA test that I took that same day.
My PSA was 3.83 and was referred to a Uro with KP.
The Uro ordered another PSA due to my last test being after a DRE and w/in 48 hours of an ejaculation. That PSA reading was 2.84. Since, i've had another PSA and recorded a 2.90. My Uro has recommended a biopsy he hopes to have performed in the next few weeks.

During this saga, i've been in the process of changing health insurance from my wife's company plan on KP to a Healthcare.gov plan on KP (my wife has gone back to school so that life event allowed for a special enrollment period). I've been working with Healthcare.gov folks and, initially, have chosen to stay on a KP plan due to its lower cost (we are now getting by on my salary alone since my wife's move back to school....).

My questions revolve around KP. I live in Portland, OR and can still change my insurance to a Providence plan or a OHSU (Oregon Health Science Univ.) plan but I only have until Feb. 8 to make the jump, after that i'm locked into the KP plan. OHSU has the Knight Cancer Treatment Center and Providence has fine doctors and state of the art cancer treatment teams. I'm not badmouthing KP but i have options today, by mid Feb. i won't.... Forgive my health insurance and provider ignorance, i never go to the doctors and ignore most details related to insurance and differentiating factors from provider to provider...... Those days are over.

My questions (sorry so long winded):
Would you seek a second opinion re: the biopsy referral?
Would you seek additional PSA testing from a different provider before submitting to a biopsy?
What is the consensus of the group re: KP knowing what you know about PCa biopsies, PCa treatment, my other options and my story?
What do you wish someone had told you about/prepared you for re: P biopsies that you didn't know before yours?

EDIT: Forgot to mention, the DRE I received was described as the following: "Felt ok, slightly enlarged but no abnormal lesions or areas that were concerning." As this was my first DRE since my late 20s, I don't know what to make of that but thought i'd mention it for sake of discussion....

I could probably come up with a lot more ?s but i'll spare you all and leave it at that.
Thanks in advance for any help, I wouldn't blame you if you stopped reading 3 pages ago....

Best to you all.

Post Edited (beaverduck) : 1/12/2019 10:50:43 AM (GMT-7)

Posted 1/12/2019 5:31 PM (GMT 0)
Hey Beaver, welcome to our club. Hopefully your stay will be brief.

Well, a PSA of 3-ish at your age is about average. However, you do have some prostate-related symptoms, so further investigation is warranted. Biopsy, unfortunately, is the only definitive way to diagnose PC--but there are also false negatives: a biopsy samples something like 1/10 of 1% of our prostate--so missing is pretty common.

You could ask for an MRI to look for hot spots--but your insurance probably won't pay for it at this point. Another option--which is not a bad idea--would be to wait a while, do another PSA in 3 months, and see if it is changing over a longer period of time.

Have you had any PSA tests before these recent tests? PC is characterized generally by slow steady increases over time. For example, mine went from <0.1 to 1 to 2 to 4 with annual tests until diagnosis.

A biopsy is unpleasant, but not usually much of a big deal. You'll have to take some antibiotic for a few days before the procedure, use an enema just before, and will have blood in your urine and semen for a week or two afterwards.

Keep asking questions, we'll answer as best we can.
Posted 1/12/2019 5:46 PM (GMT 0)
Thanks so much for the reply and kind words, halbert.
I'm resigned to the fact that I need a biopsy. I'd actually prefer one considering my emotional/psychological state at the moment. I want answers but am very fearful, obviously. Thanks for the feedback.

Re: MRIs, i'll cross that bridge when i come to it. Thanks for mentioning it.

The first PSA test i mention in my OP was my first ever and that was in early Oct 2018. Waiting a while is an attractive alternative but with my family history and other possible symptoms, and my emotional state, I think i'm leaning to going through with the biopsy.

Thanks again.
Posted 1/12/2019 6:50 PM (GMT 0)
BD... Welcome and good luck. Understand the anxiety. Good luck with the biopsy.
Hero
Posted 1/12/2019 6:59 PM (GMT 0)
Thanks Hero. That means a lot. Best to you.
Posted 1/12/2019 7:02 PM (GMT 0)
A couple things to expect on the biopsy...

I didnt have to have an enema before mine. Apparently so doctors want this, some dont.
Its a little uncomfortable, but doesnt last long.
I had a little blood in my urine for a day or so. They tell you there will be blood in your semen, so I was expecting a little pink. I wasnt expecting it to be pure dark red. 10 days after my biopsy my wife and I made love, and fortunatly had a towl (of our own that we brought with us) underneath us or we would have ruined the sheets at the bed in breakfast we were staying in.
The blood lasts for the next half dozen times you ejaculate, and gradually gets better. I hadnt found these forums yet so I didnt have any warning. Maybe others didnt do that as much, but be prepaired.
Posted 1/12/2019 7:17 PM (GMT 0)
Thanks Roadranger. Didn't like hearing this but i appreciate you taking the time. Best to you.
Posted 1/12/2019 7:38 PM (GMT 0)
You might ask your KP Uro to order a PHI. It’s a blood test, fairly recently developed, that gives more information than just PSA. For men with moderately elevated PSA and a normal DRE, it helps predict whether a biopsy will come back positive. It has been found to reduce the need for a biopsy by 30 percent.
Posted 1/12/2019 7:45 PM (GMT 0)
Since you already claim to be "...resigned to the fact that I need a biopsy," then you might as well begin becoming familiar with some of the basics of the disease, and the "rules of thumb" that you can learn best at peer-to-peer sites like this.

Here's a few pointers to start out with:
  • prostate cancer is one of the most common, and least lethal of all cancers...period.
  • since most men don't understand this first point, unsubstantiated fear of "the big C" drives most decision making related to prostate cancer...even though about 90% of men diagnosed with PC life a normal life expectancy
  • the harder you look for PC, the more likely you are to find it
  • a very substantial number of men are walking around living normal lives WITH prostate cancer, and they will never encounter the set of circumstances that leads to a biopsy, and so they'll never know they have it...and most will live a normal life expectancy
  • whether diagnosed or not, about 50% of 50-year olds have some form of diagnosable PC, 60% of 60-year olds, 70% of 70-year olds, etc. Most of these men will never know they have PC. Prostate cancer is a normal part of aging.
  • There has been an epidemic of PC overtreatment since the 1990s. Today, it is unethical for doctors to push favorable-risk PC cases (the majority of cases) towards any type of aggressive treatments where the side effects are worse than the disease.


It's a good list of learnings to start internalizing...especially as you start "looking" (biopsy) hard for PC.
Posted 1/12/2019 8:02 PM (GMT 0)
Nothing you mentioned is indicative of PC. Prostatitis, yes.
PC has no symptoms for a long time, and your PSA would be MUCH higher (except for some very rare aggressive forms of PC not worth looking into).
With PC, you should expect an INCREASING PSA. Your pattern is more indicative of prostatitis or BPH, both benign conditions.
I would recommend that you wait a few months and repeat the PSA.

Keep in mind that I am not a doctor. Also, given your psychology, perhaps a biopsy would be good to give you peace of mind.

Mel
Posted 1/12/2019 8:03 PM (GMT 0)
If you have the money, get an mri and have a guided biopsy.
DRE's-I had them from 4 different doctors, not one felt a thing.
The biopsy for me was pretty frickn easy. Yeah, its not fun, but thems the breaks. I didn't have to do an enema.
Posted 1/12/2019 8:24 PM (GMT 0)
Certainly understand your anxiety. I too have KP in N. California. I requested an MRI after my initial random biopsy and KP approved it. The MRI was the only way my anterior transition zone tumor would have been found. Anterior lesions are hard to pick up on a 12-core biopsy.

My initial biopsy showed small amounts of GL6, but Dr. Epstein reversed the findings. That’s when I requested the MRI - thankfully.

MRIs will find the clinically significant cancer that random biopsies can miss. Sounds like your doing all the right things early on. Good luck to you.
Posted 1/12/2019 8:47 PM (GMT 0)
I would wait 3 months and retest. 3 months will not put you to any risk. Biopsies can be problematic and it is best to do them if they are truly indicated.

Thanks
Paul
Posted 1/12/2019 9:14 PM (GMT 0)
Hi Beaver. Even though you are welcome we hope your stay will be brief. Re your questions:

Would you seek a second opinion re: the biopsy referral?
Yes. While biopsies are normally routine they are not totally risk free. As Compiler said, your symptoms are more akin to prostatitis and/or enlarged prostate than prostate cancer and PCa usually presents with a gradually rising PSA trend. Of course, I am NOT a doctor...just expressing what I would probably do in your situation.


Would you seek additional PSA testing from a different provider before submitting to a biopsy?
Yes. I would retest in a couple of months and make sure I refrained from sex or bike riding or any other strenuous prostate affecting exercise for a couple of days pre-biopsy.


What is the consensus of the group re: KP knowing what you know about PCa biopsies, PCa treatment, my other options and my story?
I have no experience with KP so cannot help here.


What do you wish someone had told you about/prepared you for re: P biopsies that you didn't know before yours?
Most biopsies are routine and pain free. However if you search our archives you will find men who have found them extremely painful. So...you may want to discuss this ahead of time with your doctor. Many doctors now use IV anesthesia (think colonoscopy) when doing the biopsy so that the patient is pain free. Also, make sure you get AT LEAST 12 samples, preferably 16-18. Finally, be prepared for the bloody aftermath in your ejaculate as previously mentioned.

Good luck to you. Stick with us and we will help you thru this.

Jim
Posted 1/12/2019 11:06 PM (GMT 0)
Hi Beaver, lets start with your insurance plan. You need to go through your options carefully. You want a comprehensive medical plan (more expensive) as it will hopefully cover MRIs, genetic testing, second opinions and perhaps out of state treatments. If you find you have PC you may want more even broad spectrum genetic testing which identifies drugs that can target the cancer. Depending on the size of your prostate you may want to have an MRI prior to the biopsy. This helps to target the biopsy especially if you have a large prostate. Of course, after the pathology report you want to get a second opinion. John Hopkins is good and cost $250. So do your research on the medical insurance. Nerdwallet has a nice article on this https://support.nerdwallet.com/hc/en-us/articles/211498163-How-do-I-find-a-good-health-insurance-provider- Also your doctor can help they deal with insurance all the time. Best wishes!

69 yrs., marathon runner, 44 3D-CRT/IMRT Radiation delivered via 3D-CRT in 1.8 Gy minimum dose fractions to a total of 79.2 Gy., 10.5.18. PSA .012, 8.12.18, 1.42 June 18, 2018 (Lupron 5.21.18 & 8.15.18), 12.7 May 2018, 13.7 Jan. 2018, 2.1 May 2012. SpaceOar 9.6.18, testosterone <.7, 8.15.18, Tot Mayo 19 ng .17 testosterone Free 6.18.18, Gleason 3+4=7 involving 15% of the right apex and 15% of the right mid, 3+3=6 prostate cancer involving 5% of the left base. Pathology interpretations by John Hopkins, UNM Cancer, and SF Path 3+4=7 or 4+3=7 MD Anderson Proton Center w/o %. T3 MRI w/ contrast 1.8 lesion left side 5P, Neg. Bone Scan. Prolaris test 3.5 consistent with intermediate and a PTEN test negative. Father PC age 78 RT & ADT now 94 yrs. Neurogenic bladder due to lumbar disk disease and recurrent bladder neck contracture with urinary retention man. 20 years doing catheterizations. TURP & scaring 2003, Finasteride 5 milligrams daily since 2002.
Posted 1/13/2019 2:04 AM (GMT 0)
First off, thank you all. I'm so incredibly appreciative of the support and the knowledge you all are passing on to me. I feel lucky to have found the site and such caring people.

Blackjack - great bullet points. I've read your post at least 5 times and your tone and delivery of message has been heard and added to the conversations in my head. Good ammo to navigate the next 6 mo. with.... Thanks again.

compiler - I hope you're right. I anticipate a biopsy is in my future but reading what you and the other OGs around here are saying, it could end up to be later than sooner. I appreciate your advice. Thanks again.

Idog and DTT - I've read up a bit on MRIs over the last few weeks. I appreciate your story re: the beneficial role an MRI has played in your story. I'm tempted to attack this with a "kitchen sink" mentality but cost, as always, will be part of the decision. I think my jury is still out on the "when's" of an MRI but i appreciate the info you provided. Thanks again. Idog, I hear where you're coming from re: DREs. Feels like a flimsy data point to hang one's hat on... but obviously, i don't know squat and don't want to sound flippant. I'll keep what you've said in mind.

PDL17 - Thanks for encouraging me to maybe "tap the brakes" a bit. The reality is, with scheduling and insurance related issues being what they are, I may end up waiting 3 mo. between my last PSA (12/28/2018) and the earliest I can even get a biopsy. If that duration lasts past 3 mo. or thereabouts, I'll request another PSA before the biopsy. Not sure if this makes sense.... Regardless, thanks again.

Tudpock18 - Thanks so much for hitting all my ?s in such a thorough way. I've read your reply many times and have gained a lot of perspective. My inclination to seek these second opinions is actually strengthened by the probability of my changing providers/insurance plans. No definitive plans have been made but it feels like the right thing to do. Great info re: the number of samples taken. If I end up doing the biopsy, my statistical mindset would say "i'm already here, take a half dozen more just to be sure...." but see above about how I don't know squat and don't want to sound flippant here. Thanks again for the encouragement and kind words.

SantaZia - Invaluable info, thanks. As i stated in my OP, i'm horribly/embarassingly ignorant about insurance plan details. It's almost a mental block i've put up over the years because of the unpalatable aspects of the whole process and the industry. I learned a ton just from the one paragraph you provided. Thanks for the link, i'll check it out. Thanks for your support and time.

I promise to keep you all posted as things move forward for me.
Again, thanks so much.

Best to you all, BD
Posted 1/13/2019 3:00 AM (GMT 0)
BD,

Glad we have been able to get you moving in a positive direction. Since your first ever PSA is the one that you're basing your anxiety on, I would also suggest getting another one in 3 months to see what might be happening, before you go to biopsy. PC, except in extraordinary cases, is slow moving, and getting a PSA trend is a good idea. In reality, even if you get the biopsy and come back with a diagnosis, odds are that it could be years before you need treatment.

This is the key point about PC: the vast majority of American men probably have PC after "a certain age". One researcher said that your age is roughly your odds: so at 45, you have an almost 50/50 chance of having some PC in you. And, it may never do anything except hang out and never cause trouble.

We do hope we've helped you climb off the ledge, at least a little.
Posted 1/13/2019 3:37 AM (GMT 0)
BD - Everything has been covered but to summarize from my experience.

1- Standard random biopsies are not risk free (some people get really bad infections) and they can miss tumors. They can also cause a lot of blood in urine, semen, and bowel movements (poop) and not be painless from my own experience as others have mentioned.
2- The MRI is becoming the standard of practice before doing any biopsies to see what shows up and where if a biopsy needs to be done (MRI guided sampling).
3- Did the urologist do a digital exam (finger where the sun don’t shine) and feel anything? Was not clear in original post. Their fingers are smarter than most docs.

I also would agree that some of your symptoms are similar to prostatitis which can also make you feel really sick if there is a good infection going on, been there, done that. Could be PCa also so you have to find a good urologist that you can trust to do all the right things in the right order to get to the bottom of this.

Good luck and keep us posted.
Posted 1/13/2019 4:57 AM (GMT 0)
If an Internet forum clears your head you’d probably be fine waiting. If it’s gonna stay with ya, get the biopsy. Trends are cool and all, but I never had any trend. My psa remained consistent until I began having the symptoms you’re having.

I also know a lot of things doctors recommend are boo-hooed here. (We’re smarter than most).

I’ll get corrected on this one right fast, but...you’re too young to let this go. Your dad had it. One man’s unpopular, and soon to be told wrong, opinion.

I think there’s a decent chance they’ll find some. I also think you could wait a few years to be told about it and you’d still be fine. That’s what I think.

I also think the dangers of biopsies are overblown on this forum. There is no risk free medical procedure. And I also believe an mri before a biopsy is a waste of time. The question is....”What do you do if you’re diagnosed?” “Do you really wanna know if you’ve got it at your age?” Those are the questions you’re faced with.

Life’s a carnival. Two bits a shot.

Good luck
Posted 1/13/2019 5:44 AM (GMT 0)
More great info and generous, patient replies... Thanks again.

halbert - i've had 3 PSA tests. 3.83 on 10/11/18. 2.84 about 2 weeks later. 2.90 on 12/28/18. See my OP for some details related to those tests. That said, my near future will likely include meeting a new Uro (due to changing insurance plans and providers) that will undoubtedly result in another PSA test (bonus: more data for trend analysis). This will also inherently provide a second opinion (obviously). Depending what that PSA test reads, and the new Uro's opinion, will be my guide as to what direction I go in. I want to reiterate that i don't know jack and conclusive statements i make on this forum are really just noobie assumptions.... Thanks again for the info and perspective.

Mumbo - thanks for the frank reminders re: biopsies. They don't sound like a walk in the park and i'm pretty nervous about the prospect. That said, if i have to go there, i'll be a big boy and get it done.
I'm very interested in this pre-biopsy MRI you and other folks have mentioned. Seems to make a lot of sense. We'll see what the Uro says and what my insurance allows...
Re: DREs - My Uro hasn't given me one. The one DRE I received was prior to my first PSA test (the 3.83) and it was performed my regular family doc at KP. He claimed that it "felt ok, slightly enlarged but no abnormal lesions or areas that were concerning". I'd imagine i'm due for another when/if this provider change happens... Sorry for all the vague "what ifs", I'm trying to stick to the facts but, as you guys know, the cookie can crumble in many different ways, it seems....

island time - this forum has done a lot to ease my mind but i know myself and this is gonna eat me up until i'm able to get more definitive information. I'm not implying that other posters are wrong. I'm simply feeling that the stakes are too high to assume anything and the biopsy is a forgone conclusion. That said, the "when's" and the order of operations are still very much in question. Hell, everything is in question, remember, I don't know jack.... I completely agree with the rest of your reply and, knowing myself, will approach this process with the same philosophy you touch on. Thanks so much for your blunt honesty. It's hard to hear the stuff you guys generously offer but we all know by now that life aint fair.....

I'm humbled by all of your caring spirit but, above all, your bravery. I'm a wreck but you all are arming me with the info to somehow keep my chin up. Best to you all, DB.
Posted 1/13/2019 7:51 AM (GMT 0)
beaverduck:

A partial repeat of my comment to another poster's thread:

The 12+ core transrectal ultrasound biopsy was adopted as the standard approach during a time when there was no effective imaging method for the detection of probable prostate cancer targets for biopsy.

Now, there is an effective imaging method, the multiparametric 3T MRI (requiring analysis by a truly expert practitioner).

From a purely technical viewpoint, the 12+ core biopsy is a seriously deficient method whose time has passed. The risk of infection and the negative effects of many needle punctures are real. The percentage of men experiencing serious side effects is not large, but for the unlucky few they can range from troublesome to life-threatening.

But, as with all things medical, money matters. MRI machines are expensive. The training to achieve true expertise in analyzing MRI images for prostate cancer diagnosis is very time consuming, and therefore expensive. And legions of veteran urologists have invested a massive amount of time and money in the deficient method. Adoption of the new, better method is slow.
Posted 1/13/2019 11:32 AM (GMT 0)

island time said...


I also think the dangers of biopsies are overblown on this forum. There is no risk free medical procedure. And I also believe an mri before a biopsy is a waste of time. The question is....”What do you do if you’re diagnosed?” “Do you really wanna know if you’ve got it at your age?” Those are the questions you’re faced with.

Those, my dear sir, ARE the pertinent questions. Really.

Information is neither a good thing nor a bad thing. It's what you DO with the information.

Personally, I wanted to know. My dad also died of advanced PC, about 10 years before I was diagnosed. And, I was somewhat prepared to get a positive diagnosis--but I promise it will be a shock if you get THAT CALL.

Be prepared, if you get that diagnosis--and joining with us and hearing us out and reading some of the longer stories will give you a start--be prepared to do some serious research. It wouldn't hurt to start now. Find out about current PC treatment protocols and current research. Read up on low risk diagnosis (which is the most likely outcome) and Active Surveillance. Ask your new urologist about it. Be prepared for the possibility that you could have a negative biopsy or a low risk one--and that AS is the right path for you.

Most important, do NOT let your doctors push you from biopsy to surgery in a few weeks--or even months--time.
Posted 1/13/2019 1:48 PM (GMT 0)
Everything IslandTime said. I could not have said it better. Plus Halbert’s advice on not letting doctors push you into anything should you have cancer.

The trend these days is “ignorance is bliss” in the PCa world. No need to worry about screening because even if you have it, it won’t kill you. This is very faulty thinking, in my view. Part of the “logic” is not wanting guys to have to walk around with the anxiety of knowing they have a PCa that doesn’t require treatment. Well, boo hoo! Sorry about that burden.

There’s a well known poster here that will probably say I’m an idiot, and there’s no need to worry about anything. Well, he gets to have his opinion too.

Knowledge is power, but the key is how you use that knowledge should you be diagnosed with PCa. I hope your biopsy comes back negative, but don’t panic if it doesn’t.
Posted 1/13/2019 2:12 PM (GMT 0)
BD - Couple of clarifications on my part

1- I did not mean to scare you about the biopsy. Some urologist now knock you out like a colonoscopy (you may have not had this glorious experience yet at 45) and it is pain free other than maybe knowing you have been violated afterwards in some manner. I also have friends who have had the standard 12 core biopsy awake and thought it was pretty painless. I am just trying to say that the benefit of an invasive test should always outweigh the risk so the data should clearly lead to that conclusion of having one.

2- the DRE is a important part of the initial diagnosis if something is felt. My doctor did not feel anything but two urologists did.

As far as insurance goes, most is not very good if you need expensive tests, treatments, and/or surgery. Since you are heading down the path of possibly being “sick”, you probably should get the best coverage you can for the next year (widest doctor network and smallest deductible, coinsurance %, out of pocket maximum) and hope you don’t need it. My PCa ordeal last year was well in excess of $50K at standard billing rates and I was glad I was not paying 20% of that or maxing policy limits. You have a long way to go until Medicare policies that limit such exposure are available.

You have a couple of factors, family history and prostate issues, which would mandate a closer look at everything. However, your PSA is not unusual which is a plus factor. Just find a good urologist that you like and trust, easier said than done.

Halbert is totally correct about the shock factor and you are already experiencing some of that due to family history with father at age 55. My dad has PCa so I was expecting this in the back of my mind also but there is something about being referred to the urologist that brings it immediately to the forefront of your thinking. When you finally get that call, you realize you were not really prepared for it and have a couple months of what this forum discusses daily.

Good luck and take it slow.
Posted 1/13/2019 2:43 PM (GMT 0)
Beave nothing I can add here, you’ve gotten great advice from the best of our members. Just want to say welcome and hope you are just passing through.
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