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Active Surveillance: 34 months post diagnosis

MCinNC
Posts: 32
Joined: Sep 2010

This supplements the summary below from April, 2012.  I'm continuing on AS since a 2010 diagnosis.  I've had a third biopsy in Sept '12 which was virtually identical to biopsies in 2010 and 2011:  1 of 12 cores positive, 5% of tissue involved, Gleason 6.  Additional PSAs have been:  July '12 2.7; Feb '13 2.3.  DRE normal.  Will be 59 in 2 weeks.

I'm being followed by my local urologist and also by a RRP specialist several hours away.  Since my biopsies show no progression, the DREs are normal, and the PSAs are not remarkable, I haven't had to work very hard to stay on the AS path.  I really don't have any known counter-indications to struggle with.  Obviously, this could change, and our knowledge could be incomplete. But due to this consistency, my biopsies are now being scheduled every 24 months rather than 12 months, with DREs and PSAs at 6 month intervals.

As indicated in prior posts, my early treatment choices, if it became necessary, leaned toward Cyberknife or RRP.  I have enjoyed the opportunity to follow ongoing studies and data re these techniques and others in the interim.  I am also interested in any progress being made generally in identifying characteristics of one's particular cancer on a molecular or genetic basis so as to help more precisely make a treatment decision.  While we are not there yet with prostate cancer, we hope and think that one day we probably will be.  

So, I am continuing to enjoy my day to day life without any PCa treatment side effects, while being reasonably "certain" that if and when treatment is necessary it can be successful.   If treatment related scientific progress is made in the meantime that benefits me, obviously I'll be happy to benefit from it.    For now, I"m comfortable with this strategy, but will be prepared if a change is warranted.

I hope you all are doing well.  It is always remarkable to see the work of the regular posters whose diligence and loyalty in their posting provides such a wonderful resource to those in need.  Cudos again to them.

Mac 

 

AS Update at 18 months post diagnosis:

Hello all. Felt an update was due. I was diagnosed in August 2010 after a biopsy showed 1 of 12 cores positive, Gleason 6, 5% of tissue involved. June '10 PSA was 2.3. Father had PC. General health good, age 56. Highest PSA was 6 months earlier at 2.9.

In October '10, after several months of fairly strenuous investigation and education, I formally decided to AS, or "expectant management with curative intent," with a goal of monitoring a slowly developing condition closely, delaying the side effects of treatment, and doing it without losing effective treatment options.

So, time has passed, and since then I have had regular PSAs, exams, and an annual biopsy. Most recent PSAs have been

March '11 2.2
June '11 2.3
Nov '11 2.4
March '12 2.5

A 2nd biopsy was performed June '11 with the same results as in June '10: Gleason 6, 1 of 12 cores and 5% of tissue. Another will be done this summer.

Had decided in '10 that in the event treatment was needed, that I would likely consider RRP or Cyberknife. I was interested in CK because of the research I had done on it and experiences like that of Kongo, and its availability at a medical center here near me in North Carolina. And, I also would consider RRP due primarily to finding an experienced surgeon that I really hit it off with and in whom I have great confidence and trust. I was really surprised how much of a difference in my decision making it made to run across a great doctor that you really like personally, and unfortunately, how rare that was among the many doctors that I met. Anyway, I've been followed since diagnosis both by my local urologist and at a university medical center where the RRP surgeon works and where CK is also available.

So far, I am pleased with things. The '11 biopsy showing no change was obviously big. And, while the PSA is slowly rising, it is something I can tolerate so far. One step at a time is the plan. I have much enjoyed the 18 months without the risk of treatment side effects, and should I need treatment in the future I will have extra months or years of data to better evaluate the outcomes of the various treatment options. CK or RRP will still be at the top of my treatment list, but I would certainly update my thinking if that time comes.

As we all know, we are all different individuals and our cases are different. But, the choice I made for AS in 2010 was the best decision available for me at the time, and one after considerable homework that I was most comfortable with. All have risks. There are few guarantees. But unless or until things change, I will be continuing down my current path.

I really appreciate all of you regular posters on CSN. The generosity you show with your time and the considerable knowledge you share so freely is a truly wonderful resource to those faced with such complex and emotional decisions.

Thanks again. Best wishes to all.

Mac

hopeful and opt...
Posts: 1282
Joined: Apr 2009

It's hard to believe that it's almost three years since you first posted here. I am glad to read that things are going very well for you.

For me, it's 51 months now. It's been two years since my last fused MRI/three dimensional ultrasound biopsy where no cancer was found, however there has been a rise in my PSA during the last two years. I listed my stats at "about me" page, so if you wish click my name for my stats .

Well now I am scheduled a new biopsy. This will happen next week.

Like you if things progress, I am seriously considering SBRT. I am somewhat undecided between doing the SBRT using a Novalis machine with a doctor here in So. CA., or doing SBRT using a Cyberknife machine with a different doctor on the east coast. The Novalis doc does 40 gy and the Cyberknife doc does 35 gy, both do five treatments. The one who does 35gy states that there is lower side effects with this dose. There is a difference between the two type machines,...however Kongo , an engineer who I trust does not think that this is significant.

Since the results of surgery is age dependent, being 70 as I am, surgery will not be my choice.

Mac...excuss my rambling, I am very happy to read of the success that you are experiencing. I believe that you and I both have made excellent decisions for "Active Surveillance with Delayed Treatment, if necessary" and have not over treated.

By the way, lately I notice that there are more patients selecting AS than previously , especiallly when I was diagnosed.

MCinNC
Posts: 32
Joined: Sep 2010

Hi Ira.  Nice to hear from you.

I read with interest your current case info.  It is obvious why you chose to pursue AS, yet we would always prefer to have more or better information, wouldn't we?  For what its worth, I think your reasoning is sound and I would be doing the same thing in your shoes.  I don't necessarily consider myself a big advocate for AS - but I am comfortable with it when the need for undergoing radiation or surgery is not fairly clear. 

I know the 2 year biopsy coming up is a big deal.  That is still perhaps our best or most reliable source of info.  I hope that goes well for you and the results are good.

I also agree with your observation that AS seems to be a more acceptable plan than in years past.  There is much more support for it now than before.  My local GP and urologist have sort of changed their tunes over time and are much more willing to consider or recommend it.  It is certainly not for everyone, but can be the best option for many people.  And it is certainly easier on those making these decisions for AS to be viewed as a legitimate option - I really didn't get that feeling very often 3 years ago when I was evaluating my choices.

I'm not currently very knowledgeable about the technical differences between CK and Norvalis, but I appreciate your studying and comparing them.  If I decide at some point o proceed with treatment and am considering SBRT, I'll be doing my homework too.

Best wishes,

Mac

hopeful and opt...
Posts: 1282
Joined: Apr 2009

Last year a friend of mine was diagnosed with a low intermediate prostate cancer where he required active treatment. I acted as his advocate, did research for him, recommended, and with him interviewed these docs.

As part of the research I started the below thread at the Cyberknife forum on his behalf. www.cyberknife.com

This thread was focused on the difference between two of various machines that deliver SBRT, Novalis and Cyberknife.

 Additionally, since this type treatment is relatively new, and still evolving;  there are some differences in the amount of Gys that each of the docs chooses to deliver, timing of deliveries, number of deliiveries,  and the perfered techniques to use the equipment.

http://cyberknife.com/Forum.aspx?u=21008&g=posts&t=5088&m=26482#jumptobottom

My friend finally decided to have SBRT as his treatment deivered with a Novalis machine.

............................................

 I believe that AS has short comings and is far from perfect, however AS  will inprove with technological , biological and molecular advances in diagnosis and forecasting disease progression, I also believe that those patients on AS  , will not for the most part have potentially major side effect of current active treatments.

Beau2
Posts: 228
Joined: Sep 2010

You asked about new molecular tests ... You may want to consider CTC (circulating tumor cell) testing. You can read about the test by googling it.

Congratulations on your AS!

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

Mac and Ira

Congratulations on your continuous success. AS was the right choice to you and so it is to the many in similar status. Unfortunately not many guys on AS do report about their stories or exchange views on the choice.

Many thanks for your contribuitions to a better understanding of AS in this forum.

Best wishes for a continuing QoL.

VG 

mrspjd
Posts: 688
Joined: Apr 2010

Mac,

Thx for such a thorough & detailed update. Best wishes for continued success with AS/M. 

mrs pjd

jerseyguy891
Posts: 18
Joined: May 2012

Mac,
Thank you for the post.  It's not to often we hear from a member on AS.  I hope in the future were hear from others on their diagnosis and their decision process toward AS.  I have been on AS since diagnosed in March of 2012.  Being 52 years old it seem a bit controversial.  When diagnosed I was days away from starting IMRT and I am glad I didn't follow through.  I might have been one of the overthreated.  I wish you and all the members the best.

hopeful and opt...
Posts: 1282
Joined: Apr 2009

A 35 year old man is being treated with Active Surveillance by my doctor. I've heard of even younger men with PCa being treated with "Active Surveillance with Treatment, if necessary"

D47
Posts: 9
Joined: Mar 2013

Have been on active survelience for only a short time.  My PSA has been creeping up, but nothing alarming and is definitely been a wise choice so far. My readings from biospy were almost the same with a second sample suspicious so we will see.  Next Biospy in Dec.

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