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Biopsy blank but URO says he is sure I have PC

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Posted 5/25/2010 10:42 AM (GMT 0)
Thanks
I will post the results in a few weeks time
Trog
Posted 6/17/2010 7:22 AM (GMT 0)
It is now 3 weeks since my template biopsy. 83 samples taken. 2 small sites on opposite sides of prostate tested positive. Both sites Gleason score 6 and in the peripheral zone. Neither site would have been found by the TURP proceedure proposed by my first URO. Boy am I glad that I didn't go ahead with that.
Walking normally almost immediately after surgery but now waiting for another 2 months for the prostate to recover before HIFU
Trog
Posted 6/17/2010 8:56 AM (GMT 0)
Thanks for the update Trog

When you say two small sites tested positive do you mean 2 cores were positive or that several cores picked up cancerous cells but in just two areas?

If it's just two cores, then I'd say that two positive 3+3 cores out of 83 sounds like you could be an excellent candidate for Active Surveillance. I'd certainly give things plenty of time to heal/recover from all those biopsy needles before doing anything else.

And I think with 83 cores you have probably set a record at HW for the number of cores taken; it also makes me wonder how much of your prostate is left after the amount of tissue removed in 83 cores.

Stay fit
Alf
Posted 6/17/2010 10:28 AM (GMT 0)
Alf

I am not sure that 83 samples is the same as 83 cores. I think that there may be more than one sample per core. The template has guide holes every 4 mm in a grid.

It was 2 sites not 2 cores but the tumours are still very small. I do not know how many cores were positive.

One of the options offered was active waiting but, in view of the steady increase in PSA levels, I opted for treatment.

I have had to jump through so many hoops to get this far and I am not sure that I would be offered this treatment again on the NHS

The whole reason that I have opted for HIFU is that it focusses on the tumour with little colateral damage. This makes me an ideal candidate for the HIFU trial.

I do not understand what advantage I would gain by waiting until the tumours are large enough to cause concern and will become more difficult to treat

Your final comment is rather apt. In the pre-op tests I was told that the ECG trace showed that I had had a heart attack  some time in the past and the anaethetist had to give his approval before the op could go ahead.

This was a great shock for me because I feel as fit as a flea ( albeit a rather overweight one). I regularly go cross country cycling, swim and do 10 mile hikes. I can still run up 2 flights of stairs without becoming breathless.

If I can do all this on a dodgy heart, imagine what I could acheive on a healthy one.

I do not understand how I can have a heart attack severe enough to put an operation in jeopardy and not have known about it at the time or not been aware of any symptoms since.

It does suggest that I should go ahead with the op before my health deteriorates.

I have another 2 months to wait before I see the uro again, by which time my prostate should have recovered

Best wishes

Trog

 

Posted 6/17/2010 10:49 AM (GMT 0)
Thanks for those extra details. I am sure you are going down the right route.

Amazing about your heart. I guess the bit of your heart that had the problem was not the most important one. And they never even gave me an ecg they just did a very thorough examination of my chest with a stethescope. The fact that you didn't notice may have had something to do with what you were doing in the days and weeks afterwards so that your heart healed and recovered well as it was resting and being treated well with the right diet exercise etc. But heart atacks come in very different sizes. My dad's first one was almost put down to muscle ache as he'd cut down a tree the day before, the second one nearly killed him.

I always went up stairs three or four treads at a time as someone one said to me that always gives you the option of reducing it to one or two at a time when you're an old man, whereas if you do it the conventional way now you'll need a stair-lift when you're old. Not old yet but down to two at a time already!
And I used to be able to jump down a whole flight at a time too, but that's not good for the ankles.

Avoid stairs and lifts. (My wife works on the 8th floor so she is forgiven for using the lifts occasionally.)

And you'd be surprised at the Dutch, they don't walk when on escalators: really weird sort of the opposite of the way they ride bicycles. The railways are trying to ecourage the stand-on-the-right-walk-on-the-left idea to speed up things at busy stations.

Alf
Posted 6/17/2010 4:30 PM (GMT 0)
Trog,

Sometimes a heart attack can be a "silent" killer, with no warning or symptons. You were fortunate your's obviously wasn't serious at the time.
Posted 6/17/2010 10:43 PM (GMT 0)
Trog

I second the suggestion that you consider Active Surveillance with a proviso that you get a second opinion on the biopsy to reconfirm that there are no 4's lurking among your 3's.

The answer to 'if not now, when?' may properly be 'never'.

Also, while in concept the HIFU approach has few side effects, in practice a lot depends on the surgeon, and with other than top flight people, side effects are an issue. There is a British set of stats, perhaps from a prior trial, reporting almost 50% side effects between incontinence and impotence.

I am not anti-HIFU, I was treated using HIFU a week ago. So far, the surgeon's report and the recovery are both excellent. But any good science/maths man will tell you that one case does not comprise statistics. If you want to know why I did not practice what I preach, I had Gleason 7 tumors and one was sizable, so AS was not a real world option.

Good luck with your choice.
Posted 6/18/2010 12:18 AM (GMT 0)
Quite right there, larch, with a Gleason 7, I would never reccomend AS to anyone. yes, a person would still have plenty of time to research treatment options, but with any mix of type 4 cancer cells, there is also an understood danger to waiting long, very unpredictable creatures those cancer cells.

I am not anti-hifu either, but as long as its not FDA approved here in the US, I just don't consider it a viable treatment for the average American patient.

David in SC
Posted 6/19/2010 1:21 PM (GMT 0)
I have just had a letter from the uro confirming the results of the template biopsy. He reports 3 out of 89 cores (89 is not a typo) tested positive. My PSA has gone down to 6.0.

AS is one recomendation but I still favour HIFU.

larch -  I am interested in the stats that you mention. Have you any reference that I may follow up? The only adverse effect that I have heard of is that some patients have needed it to be re-done. This is regarded as an advantage as other options preclude further treatment.

I believe HIFU was originally used for full ablation of the prostate; can that be where the stats come from? The current trials are for focussed HIFU where only the tumour sites are ablated.

I have plenty of time to make a decision. My next appointment with the uro is in September

David - I take your point about FDA but the evidence that they will use comes from patients on trials. In the UK the trials are conducted under grants from NICE (National Institute for Clinical Excellence) which - I guess - is the equivalent of the FDA. My thoughts on this are that I didn't like the other options. All options have risks, some of which are life changing and HIFU has the least risk of them all.

3/89 cores and a Gleason of 3+3 suggests that I am in a low risk group and I might reconsider reverting to AS when I look at larch's stats

Trog

Posted 6/19/2010 1:38 PM (GMT 0)

Trog, since you have indicated that you are considering active surveillance, I have posted a couple of links for your consideration.  The first one is a presentation by a well known U.S. prostate surgeon, Dr. Peter Scardino, who is head of urology at Memorial Sloan Kettering in New York City.  As a surgeon, his opinion carries a lot of weight with me when he speaks about the use of active surveillance. The second link is from Johns Hopkins and gives some basic info about their active surveillance program...which they call expectant management.

At your age and with your stats, this sounds like a viable option that you might consider.

Tudpock (Jim)

http://www.urotoday.com/media/presentations/auany2009/scardino_restaging_low_risk_prostate_cancer_10_27_2009/player.html

http://urology.jhu.edu/prostate/advice1.php

Posted 6/19/2010 3:06 PM (GMT 0)
The link to the NHS reports is:
http://www.nice.org.uk:80/guidance/index.jsp?action=byID&r=true&o=11128

You can get a summary at yananow which is another site with excellent discussions of approaches, but there are times when getting as close to original source materials as possible is better
Posted 6/19/2010 3:49 PM (GMT 0)
Tudpock18

Thanks for you info. I am not sure whether you are pro or anti AS

Peter Scardino is concerned about the number of RPs especially now the number of positive tests for PCa are increasing. He asks whether RP is often an over-reaction based on the patients' fear of cancer. The critical slide in his presentation is no 46. He recommends that, to reduce the risk of over treatment, patients with low risk cancers (Gl 6,PSA<10 and PSAD <0.15, cT1c-2a, <4cores) should consider restaging with MRI and repeat biopsy to rule out higher risk cancer, then undergo AS.

The most interesting thing for me is that he suggests that in 5-10 years time the future treatment for low risk PCa will be focal therapy for locallised cancers .

In his notes he has added that "Perenial mapping biopsy may allow more accurate detection of unifocal cancers and thus allow focal therapy to be performed with precision"

In other words he is recommending the route that I have taken.

This leaves the question - why the 5-10 year wait in the US when it is available now in other countries. I believe that, for legal reasons, the FDA is more cautious in accepting new treatments especially when RP is the treatment most likely to eliminate cancer. It is a pity that the conseqences can be so severe and life changing.

The Johns Hopkins link recomments AS with annual biopsies. My 2 TRUS biopsies did not find my cancer. It seems to be a very unreliable method. Annual template biopsies, although reliable, are not a viable option.

Thanks again Tudpock18 your links have given me greater confidence that I have made the right decision

Trog

Posted 6/19/2010 5:00 PM (GMT 0)
Trog

If you do not want to do annual biopsies, then AS may be off the table for you - check with your MD,

Not sure that I would conclude that just because prior biopsies did not find the cancer that the biopsies were unreliable, the biopsies may simply have shown how small the cancer was/is.
Also, there is literature suggesting that finding all the cancer cell clusters by any means other than post-surgical removal slice by slice biopsy is not feasible with current technology. Indeed you seem to be a poster child for that belief.

Also, while the F is HIFU is for Focused, HIFU is not necessarily a focal treatment. Indeed the F in HIFU I think means where the ultrasound beams cross and are focused.

HIFU certainly can be focal, and some undergo hemi-ablation, but I would be much surprised if your trial group MD's have the intent or skill to do a focal treatment, but as above, I do not believe that this limitation is a bad thing.

I did not undergo a focal treatment, and would not suggest such to others until the technology exists to be far more confident about cancer cell cluster location.

Larch
Posted 6/19/2010 5:32 PM (GMT 0)
Thanks larch
I have printed out some documents but have yet to read them
I will come back when I have some time

Trog
Posted 6/19/2010 6:56 PM (GMT 0)

Trog, I'm glad that you found the links helpful.  To specifically answer your question, I am pro-AS if the situation is right.  For example if I had your stats, AS would probably have been my choice.  I can certainly understand your reluctance to choose  a treatment with serious quality of life downside.  Frankly, that was one of the primary reasons I chose brachytherapy as the likilihood of cure for my case was the same as for surgery but with much less onerous side effects.

Having said the above, I can also understand why you might choose HIFU as a targeted focal therapy.  While it is often thought that PCa is multi-focal, with a saturation biopsy there is certainly a higher chance of locating the tumors.  You might also consider a color doppler ultrasound.  Speaking of focal therapies, one of our forum members, Realziggy, had early stage PCa and underwent TFT (Targeted Focal Therapy) with cyrosurgery in a clinical trial.  His results have been excellent and you might want to check back to one of his threads or maybe he will weigh in on this thread. 

Finally, I have taken the liberty of forwarding another link from the Prostate Cancer Research Institute re HIFU.  Some of the info is dated but this might be helpful nevertheless.  Under "side effects" you can see that impotence is listed.  This is undoubtedly for full prostate treatment rather than focal treatment but I mention this FYI anyway.

Good luck and keep us up to date.

Tudpock (Jim)

http://www.prostate-cancer.org/education/novelthr/Chinn_TransrectalHIFU.html

 

Posted 6/19/2010 10:46 PM (GMT 0)
larch

HIFU seems to be a rapidly developing technique. The equipment available to me is truly focal with an accuracy of 2mm.

I suggest you look at the excellent link posted by Tudpock18 (thanks Jim for this  - I have a lot of reading to do before I post back). Even this is 5 years out of date.

I like the idea of being a poster child. I had not heard of this expression before. Perhaps this the final confirmation that I am in my second childhood. I hope it is not as traumatic as the first.

Trog

 

Posted 6/20/2010 1:25 AM (GMT 0)
Trog,

The issue is not the accuracy of the HIFU machine in the right hands, I have no doubt that a good surgeon can use a HIFU machine to obliterate your known tumors with great precision. That accuracy is why nerve sparing results are so frequent when a good surgeon is using the machine.

The issue is whether the current technology can identify with precision all of the cancer cell clusters, and there I believe the answer is no. Perhaps here the analysis should be parallel to AS, and if you have a Gleason 6 (3+3), then obliterating the known clusters - focal surgery - provides the desired result, and a considerably better result than doing AS.

If a second opinion, or future biopsy, says any of your 3's are in fact 4's, however, then the game changes and I suggest you need to obliterate all of the prostate where very dangerous cell clusters may be lurking, and growing undetected.

Larch
Posted 6/20/2010 8:04 AM (GMT 0)
We are all at the mercy of the competence of the surgeon whatever technique is used

The only way of being sure that all the clusters are found is by post operative analysis after a RP. By this time it is irrelevant.

The next best sampling method seems to be transperinial template guided biopsy. Taking a regularly spaced grid of cores (89 in my case) seems pretty thourough to me. This degree of precision can only justified if a focal method of treatment is to be applied. TRUS is an randomised method of sampling with the poorest success rate of detecting tumours.

AS seems to me to be risky because you need to wait year on year to monitor tumours which may lie undetected until they are of sufficient size to be picked up by TRUS. The problem with waiting is that the tumours may not only progress in size but also in their Gleason score.

RP is the only sure way of geting rid of PCa. If you can live with the life changing consequences of this then that is the best choice, otherwise the jury is still out but my money is with focussed methods. This also seems to be the opinion of Peter Scardino and who am I to argue with him?

The question is whether the accuracy of focussed methods is developed enough to be adopted by the FDA. Again the jury is out in the US but the verdict is positive in much of Europe, China, Japan, Carrabean, Mexico and Latin America etc. I should add that the UK is sitting on the fence. It is being used in private practice and in trials for the NHS. For me I need to make my choice soon. I don't fancy sitting on the fence for too long while nursing 89 puncture wounds.

Trog

Posted 6/20/2010 11:07 AM (GMT 0)
Trog
Choosing what to target and using the chosen equipment to hit that target accurately is a job we have to leave to the experts.

However we seem to have a typical Gleason 6 situation here that raises all those questions that both patients and doctors cannot answer perfectly (What is there, where is it, how bad is it, how quickly is it changing etc?) and thus decisions have to be made regarding treatment on the basis of what end up being assumptions, and perhaps even a best case scenario. (Albeit the conclusions/assumptions are made using scientific evidence, nomograms, mathmatical models or whatever.)

The doubts that As invovles, but also the waitimng period when you are deciding what to do are about having to learn to live with the idea that there might be a bit of Gleason 4 somewhere that was missed. And the possibility that there is a lot of what I will call Gleason 2 in other parts of the prostate that might soon decide it's going to change.

Plus there is the issue of what can I do as a second treatment if the first option fails. (eg RT after RP is possible but not RP after RT)

Had you only had 12 or 16 cores taken this would be a harder decison for you Trog, as there would be more areas of the prostate about which nothing much was know. But with 89 (!) cores taken I would hope that the lab gave them a very thorough examination that gives you a very high chance that treatment targetted on the bits of tumour that was found will have a better chance of success.

Sitting on a fence after a biopsy must be very uncomfortable! It was hard enough sitting on a comfy chair.

Alf
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