A very worried guy.

Hi all. I am new here and only joined today, although I have been a regular reader of this forum for the past few months, after my hospital visit yesterday decided to sign up and post my story with the hope that I can get some advice to maybe help me from going CRAZY with worry.

My story so far...........

First off I don’t live in the USA, so hope you are all cool with that!

I am 64 and lost my dear wife of 30 years 12 years ago, so now live on my own and don’t really have anybody I can talk to about this kind of stuff and help me share the concerns that I have right now. So hopefully I can find a few guys here who wont mind me bending there ears a little.

about 18 months ago I went to my doctor because I found myself wanting to pee all the time, every half hour during the day and 4-5 times during the night. Apart from disrupting my sleep pattern I had to ensure that I was not far from a toilet when out. She carried out a DRE examination and told me that my prostate was “enlarged but smooth” That combined with a PSA reading of 3.8 made her take the decision to treat me for an enlarged prostate with the alpha blocker “Tamsulosin” After about 2 months all was back to normal. December last year she called me back in for a routine check up and carried out a further PSA test. The test came back as 4.2 and she became concerned as the “norm” for my age group is 4 over here. She told me she would contact a specialist consultant and see what course of action should be taken (if any) In January this year I got a letter for an appointment in February to go see the consultant at the hospital for “further investigation” Then with FIVE cancellations I eventually got to see the consultant in June. My GP was shocked! And told me I should have been seen within two weeks of here referral. Even though I had that appointment kept where I had an MRI scan and further PSA blood test carried out a week later ( that had now risen to 5.1) I told her that I was not happy with the delay and had lost all confidence in the consultant. She decided to refer me to another hospital of my choice and got that appointment fixed within the two week window. In the mean time I got a call back from the first one and decided to go just to find out the results, because the worry of “have I or haven’t I” had been driving crazy for almost 7 months! This is when I found out my PSA reading was 5.1 and wanted to carry out a Transrectal Ultrasound (TRUS)-Guided Biopsy there and then, but without the Ultrasound!!!! Apparently they did not have the Ultrasound there, so just wanted to take 12 stabs in the dark so to speak. I said “what about the MRI results?” He got his nurse to try and find them, but when she came back she said they were not ready. I told him that I thought that the point of the MRI scan was to see if areas of the prostate required further investigation. He said “Yes, but as you are here we may as well do the biopsy anyway” WHAT!!! I had already been reading that this type of biopsy was only 25% accurate and that many men have to have three or more before results could be pretty conclusive, so refused the biopsy and said I would rather wait for the MRI results. Two weeks later I was called back for the MRI results. Although the scan did show some “questionable” areas nothing was showing outside of the prostate and the consultant said other than the biopsy there nothing else he could offer and felt just six monthly PSA monitoring was the best course of action. As the biopsy did not use ultrasound I felt I would wait to see the new consultant and at least get a second opinion.

I honestly felt like cancelling the new appointment because the MRI scan had not really shown up anything to be over concerned about, but my GP said I should keep it just to see what the new consultant had to say. I went for that appointment yesterday (another PSA test had been taken three weeks ago for this appointment) and felt it was just a formality after he had viewed the previous MRI results, but you can imagine my horror when he told me the new PSA reading was 19. That is almost 14 points in just 8 weeks! He told me in view of this he would like to carry out an Transperineal Biopsy (Template Prostatic Biopsy) I told him my concerns about having a biopsy and he said this type of biopsy is much safer and far more accurate, about 95% in fact as they target the whole area of the prostate by taking 20-40 samples. I have reluctantly agreed to have this procedure carried out, but only on the grounds that my PSA level has shot up in such a short period of time. I am now waiting for a date.

So that is where I am right now, worried sick that I could well have PC and the fact it is now some 9 months down the road since my GP made the first referral and not much closer to knowing.

Finally I have a few questions that I hope you all can help me with and maybe put my mind at ease a little. I know I may be pre-empting things a bit here, but I have always been “a glass half empty” kind of guy rather that “a glass half full”

1. Do you think that all my previous PSA test could have been wrong and in fact this new one correct and indicates my PSA level had always been much higher? Or can a PSA reading raise so high in such a short period?


2. Although not recognised over here, I have been reading the concerns of some US cancer experts saying that through having any kind of biopsy, if cancer is present cells could be released into the blood and form in other parts of the body at a later date. Cells that would otherwise remain within the prostate and my not pose a real threat.


3. Should my biopsy prove positive and I am offered treatment what is the best type to go for? Bearing in mind that your cancer treatment over there is far more advanced than here. I think you even have Proton Beam Therapy, where we are not due to get that until at least 2017. I appreciate that all diagnoses is different according to the type of cancer found and how advanced it may be, so it is like saying “how long is a piece of string” But any advanced advice may help to make a informed decision should the worst outcome happen. Also had anybody here decided NOT to have treatment for any reason?


4. Taking the above into account and if I do have PC I have been reading horror stories of post treatment side effects, mostly incontinence and erectile dysfunction. Living with both or either of these would scare the crap out of me. I already suffer with bad bouts of depression since losing my wife and fear that living with these side effects could actually tip me over the edge!


Ok, that’s enough for now. I may have more questions later, as and when I can think straight, but after the news yesterday I feel that I am on some kind of crazy roller coaster ride that wont stop until my brain explodes!

Thanks for taking the time to read my ramblings, and thanks if you feel you are able to help and give some positive feedback. It would be much appreciated right now..

God bless you all the other side of the pond.

P.S. Please excuse my grammar and spelling, I have been trying to write this on and off all day, but my head and thoughts are just not focused at the moment.

1) A PSA test is not "right" or "wrong". It is what the test used measured.
Does it mean you have Prostate Cancer? Maybe, maybe not. As already mentioned, an infection will drive it up, possibly quickly. That is why many uro's here would have you take a round of antibiotics to see if it falls equally quickly before suggesting a biopsy.

2) I think that is so much horsecrap.

2a) The transperineal biopsy would be much more effective, and cover parts of the prostate that the transrectal can not. It is a sedated process, and you would need someone to help get you home. I drove home after my transrectal, not an option with transperineal.

3) There is no best treatment. There are some that are better tolerated depending on your age and any extension pf the PCa outside the capsule. These are questions that you can not even consider yet, as you have no data to start from. Leave all that for later (possibly never?).

4) I have had surgery, radiation, and am on Lupron. I have the side effects of all of them. I am still enjoying being alive. There are things I have to be careful with, places I can not go, and things I know I can not do. But the alternative is very dark. I'll not give that room in my day.

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Moderator - Prostate Cancer
(Not a medical professional)

DaVinci 10/2009
My adjuvant IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808
HT (Lupron) 6-mo injection 9/12, 6/14;Prolia 6-mo inj 12/12, 06/13, 12/13, 6/14

Hi robertC. Thanks very much for such a prompt reply.
I have just been reading about prostatitis and have none of the symptoms mentioned. In fact I have no symptoms of any kind, apart from the enlarged prostate and raised PSA. I feel fine!



Hi 142. Thanks very much for your very in depth reply. I am pretty much aware of all you are saying, as I have spent the day reading everything I can find on this condition.

The reason I mentioned about the risk of cancer cells being released into the blood during a biopsy is because I have seen reports by top US cancer experts on just that subject. Nothing is known about that over here thogh, but after reading the reports I did not want to dismiss them totally. But then it sounds like you are already aware of them.

Reading some of your previous posts I am aware of what you have been through and still dealing with now. I should imagine if you have a large family and friends network around you the side effects of your treatment should be a little more bearable with there support. I pretty much have nobody apart from the four walls I live in. Bricks and mortar may listen, but unfortunately cant talk. I should imagine that you have people you can lean on and get some level of support when venting you feelings, thoughts and frustration, but then maybe I am just feeling sorry for myself right now and possably for no good reason as you point out! Not a good thing, but just the type of guy that I am.

“I have to be careful with, places I can not go, and things I know I can not do”

If you are willing to share any of this information then I would certainly be interested in hearing about it. In particular places that you are unable to go!

For me, if the worst scenario happened and I could no longer achieve an erection then I would probably feel “incomplete” Not a full man so to speak. I may no longer have a partner, but not being able to fully function in that area scares the crap out of me and probably put me off should I wish to find a new partner in the future. I am only 64 after all and there still life in the old dog yet......I hope!

By the way, unless you have not already worked it out, I live in the UK. Although we have a free health service here, it is not as good as it used to be. Many cancer treatments and drugs are now refused on the grounds of cost. America leads the way in this field and we try to follow, but not very well I am afraid.

Thank you very much for your warm welcome, both of you. I at least feel a little better now I have got my thoughts and feelings out in the open.

you could consider a fPSA and/or a PCA3 test too.

I just wanted to welcome you aboard Healing Well and second everything 142 said.

I had surgery, had incontinence for 22 months until recently having additional surgery to correct it, and have ED but am dealing with it and have orgasms that are better than before.

My PSA has jumped around from 5 to finally 18.5 in 12 yeas so PCa is very slow growing.

Good luck and now that you have joined HW, you are not alone any more.

Bill from Florida USA

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Age - 63
Feb. 2012 - PSA 18.5 Biopsy 4/27/12
Positive 10 of 12 cores, Gleason 6 then
Da Vinci Surgery 07/17/12, Dr. Vipul Patel
EPE, positive margins, Gleason 3+4=7, involving 50% of gland, prostate weight 57 g. Stage pT3a, Lymph node involvement: 0/4
All post-op PSA tests through 10/15/13 undetectable <0.1
PSA 1/15/14 0.1, 4/1/14 - <0.1, 6/24 - 0.1
AUS AMS 800 installed 4/11/14 finally dry

Hi Casper 555,  I'm Dan Kasper, so already we have a connection. Perhaps Casper 319, a veteran member here will add a Comment. Appears you've had a frustrating experience so far, Lupron Jim's advice is right on. He is very knowledgeable. My first advice would be to first, don't get overly worried. PSA rises can be dramatic, but even more dramatic decreases are possible. Looks like you have done a lot of homework already. Get a very experienced Oncologist that you trust, gain as much knowledge for making decisions, and for me I like to say "keep the faith". That keeps me going in my battle with "the beast". Talk to you again soon, Dan Kasper in Southern Calif. 57 yrs old, DX PCa on 11/04/12, 5 Of 10 Bio sites-Gl sc in 3=4+3, 2=3+4, 1= 3+3 MRI scan = Mets, on several bones 11/4/12=71.4 Lupron 1/1/13=2.700 2/1/13=0.674 3/1/13=0.162 Lupr 6/14/13=0.103 Lupr 09/11/13=0.743 Lupr 11/18/13=1.43 12/20/13=2.73Eligard, 4/26/14=2.70 6/23/14=3.77, 8/ 1/14=5.25 Zytiga 9/12/14=1.46 Post Edited (Wings of Eagles) : 9/18/2014 9:57:54 AM (GMT-6)

Hi Casper. Welcome to HealingWell.

<---- See my name?

Since I know you won't listen to my advice about not worrying, how about we compromise: You worry about it on Mon, Wed, and Fri, and I'll cover you on Tues, Thurs, and Sat. Sun will be a day of rest. Deal?

You already have good advice about treatment and next steps above so I won't cover that Instead, I'll tell you about ED and incontinence.

Incontinence first, since it is most important - believe it or not!
2/3 of guys will be continent at 3 months after surgery. Of the remaining 1/3 , 2/3 of them will be continent at one year. Of the remaining unlucky 11%, half will have follow up surgery to get it fixed. That works. Know that Incontinence can be fixed. Don't worry! (on Tue, Thurs, Sat, Sunday only)

Now for ED. You don't need to worry about this yet because you don't have it. about half the guys will have issues after surgery. Ther3e are many treatments and fixes. You can go to the Franktalk.org website to get details not appropriate for publication here. Just know there are fixes.
Single guys rave about the things they can do now. "It is like being 18 again only without the stupid." Their partners are always amazed at their vitality and stamina.
So don't worry about that either. (Sunday only)

You will get through this and might even end up better than you can imagine.

I wish you well.

Jeff

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Age: 61, Mar 38 yrs, 56 dx, PSA: 4/09 17.8, 6/09 23.2
Biopsy: 6/09 Pos 7/12, 20-70%, G 4+3, Bone, CT Neg
DaVinci RP: 7/09, U of Roch Med Ctr
Path Rpt: G 3+4, pT3aNOMx, 56g, Tumor 2.5x1.8 cm both lobes and apex
EPE pres., PNI exten., Sem Ves, Vas def clear, Lymph 0/13
Incont.: AdV Sling 1/11
ED: Quadmix
PSA: 10/09 .04, 7/10 <0.01, 7/11 <0.01, 1/12 <0.02, 9/12 <0.02, 4/13 <0.02, 3/14 <0.02!

Casper555
YANA (you are not alone). There's a large support group here. Please feel free to ask for help anytime as you go through this Journey. Hopefully you don't even have PCa and you'll forget about us. But if you do, there's a ton of options and information as I'm sure you've already found. Unfortunately there is no one right answer. But there are protocols based on years of research. Good luck. Hope you don't need to be here!
Bob

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DOB January 1944 (age 70)
1981: prostatitis corrected with meds.
2000-2013 BPH treated with finasteride & tamsulosin; also low T treated with androgel
PSA history: Nominal / Est. Adjustment for finasteride effect
2001- 2009 0.4-.6 / .8-1.2
11/2011 2.2 / 4.4
8/2012 2.7 / 5.4
2/2013 5.5/ 11.0
4/2013 6.1/ 12.2
5/2013 6.6/ 13.2
11/2013 0.1/ na
1/2014 0.2/ na
4/2014 0.3/ na
Treatments:
6/2013 Bx/Dx: PCa Gleason 4+4=8 (Bostwick), 2nd opinion 4+5= 9(Johns Hopkins), 2/6 cores on right positive, 10% & 40%, DRE neg. (Stage PT1c)
7/2013 Bone scan and 1.5T pelvic MRI, negative for PCa
9/7/13 open RRP, Johns Hopkins, Ted Schaeffer MD PhD. No complications
9/9/13 Pathology: 33G, Gleason 9, both nerves spared, SVI+, EPE+ and 4mm + margin at base (Gl7), 10 lymph nodes dissected, all negative for PCa (Stage upgraded to PT3bN0M0)
9/20/13 Foley and staples removed, no complications
5/14/14 First Three month Lupron shot (22.5 mg.)
5/20/14 3T pelvic MRI negative for PCa
6/4/14 Started 38 sessions of IMRT/IGRT, total 68.2 Gy to prostate bed only
7/11/14 Started taking Megestrol Acetate for hot flashes and Flomax for urinary frequency.
Side Effects of treatments:
RRP: Incontinence: one pad per day for 13 weeks post op, none thereafter
ED: some pre op, total ED post op. Tried Viagra and VED
ADT: Hot flashes, mild fatigue, constipation, diarrhea, urinary frequency
SRT: None until about a week before the end, then diarrhea, anal pain, blood from severed hemorrhoids, fatigue.

Casper,
Relax! Not one person here is waiting breathlessly by their computer screen desperately looking for a response. We are not 15 year old girls on prom night We're guys and fully understand what you're going through. We get it.
Don't worry about answering everything and everyone individually. That burden is too much. Just do what you have to do to get educated and decide on treatment. I promise we won't hold a missed or forgotten response against you.

Just take it easy and get well.

Jeff

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Age: 61, Mar 38 yrs, 56 dx, PSA: 4/09 17.8, 6/09 23.2
Biopsy: 6/09 Pos 7/12, 20-70%, G 4+3, Bone, CT Neg
DaVinci RP: 7/09, U of Roch Med Ctr
Path Rpt: G 3+4, pT3aNOMx, 56g, Tumor 2.5x1.8 cm both lobes and apex
EPE pres., PNI exten., Sem Ves, Vas def clear, Lymph 0/13
Incont.: AdV Sling 1/11
ED: Quadmix
PSA: 10/09 .04, 7/10 <0.01, 7/11 <0.01, 1/12 <0.02, 9/12 <0.02, 4/13 <0.02, 3/14 <0.02!

Hi Worried Guy.

Well as all these guys were kind enough to take the time and respond to my opening post I thought it only fair and the polite thing to do and reply to each and every one of them and I will.

When I made that first post my head was all over the place, and with nobody really to talk to I was getting pretty desperate, until I found this wonderful place. I feel so much better now and only thanks to you guys.

My trip to the doctors today did not go as as I had hoped. I thought she was going to do a fresh PSA test, but in fact the blood test was just my scheduled yearly one that I have to have done. I should of known that anyway, because she asked me to fast for 12 hours before I went. I asked if she would do a PSA and Free-PSA test, but she said NO and wanted to leave that to my new consultant, so I will just have to wait. She did do a test to see if I had an infection that may of caused my sudden PSA rise, but found nothing.

In case you are interested here is some information about my new consultant. He is only a young guy, in his early 30s

Background Information.

He studied at Cambridge University and undertook a PhD on the subject of prostate cancer brachytherapy. In 2010 he received a commendation at the prestigious Royal Society of Medicine Young Trainee of the Year Awards.

As well as general urology, He manages urinary stone disease, problems with urinary flow and urological cancers.

He has set up advanced Prostate Diagnostic services incorporating multiparametric MRI and comprehensive transperineal prostate biopsy- this has reduced infections and inconclusive transrectal biopsy, and most importantly is preferred by patients. He has also introduced short stay laser prostate surgery for benign prostate problems and manages kidney stones.

He strongly believes in evaluating outcomes and contributing to published literature. He regularly presents and teaches at international meetings and has received numerous prizes for his work. His clinical approach to patients is that they should receive the best available and up-to-date evidence-based care.

He investigates and manages the following conditions:

Raised PSA/ Prostate cancer- MRI and targeted transperineal biopsy, active surveillance, brachytherapy
Kidney stone disease
Blood in the urine/ urinary tract infections
Difficulty passing urine (laser surgery for benign prostate disease, urethral strictures
Circumcision (including local anaesthetic)
Scrotal conditions eg. hydrocele repair, vasectomy, epididymal cyst removal.
Personal profile:

Although he is young he certainly sounds well qualified. What do you think?

Thanks for taking the time to reply. I will reply to others as and when I have the time, soon I hope.
Casper555

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Age 64
Dec 2013 PSA 4.2
July 2014 PSA 5.1
Oct 2014 PSA 19.

Awaiting transperineal biopsy (Template Prostatic Biopsy)

Just a quick question.

As previously mentioned I had a “prostate specific” MRI scan back in June and although it showed that my prostate was enlarged (I already knew that) there was no “real” indication of anything else. How accurate is an MRI scan in that respect? Can it miss things? Would it pick up on any bone mets in that area? Or does it just give a picture on the condition of the prostate? I have not had a bone scan as yet, but assume my consultant may do one when I see him.

Also last year I had an MRI scan on my spine because of long term back pain problems. It showed a degenerating disc at the base of my spine. Could that scan of also shown the presence of any bone mets?

Ok, so that is more than one question..............Spank me!

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Age 64
Dec 2013 DRE Enlarged but smooth prostate.
Dec 2013 PSA 4.2
July 2014 PSA 5.1
Oct 2014 PSA 19.

Awaiting transperineal biopsy (Template Prostatic Biopsy)

You're more than a few times zones away. It's still September over here!

Hi Casper,
Fluctuations in psa are normal. Sex, bike riding ect will increase psa, but not from 5 to 19. It is also pretty rare for prostate cancer to cause psa to increase 4X in 3 months. This is a classic symptom of prostititis or an infection.
You mentioned a prostate specify MRI; normal 1.5T MRIs are not very good at imaging the prostate even when a rectal coil is used. A multi parametric MRI with a 3T is now the standard imaging for PC diagnostics.
Having bone mets without identifying any cancer in the prostate (skip Metastasis) is extremely rare and there have been only one or two cases worldwide where this has occurred.
At 64 there is a 60% probability of you having some type of prostate cancer cells cells active and about a 90% chance of those cells being low grade or indolent.
The highest probability is that your psa rise is due to BPH and the rise from 5 to 19 is due to some type of infection. (If it walks like a duck and quacks like a duck, it probably is a duck).