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Decided on surgery based on family history

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Posted 7/13/2010 3:37 AM (GMT 0)
Hello all,

After looking at many options available my husband has decided on Da Vinci surgery on the 20th of August subject to the results of an endorectal MRI. We are very happy with the surgeon who has done 500+ Da Vinci surgeries.

His PSA levels have dropped significantly in June and in normal circumstances we would have gone for watchful waiting. However, when we investigated how his uncles and grandfather died we realised that he has hereditary PC as his maternal uncle died of PC at 60 and his maternal grandfather died of PC at age 72. His remaining maternal aunts and uncles are in their 80s. I understand from my reading that PC genes can be inherited from the maternal line.

We hear from doctors that his low psa, gleason level and number of cores means that statistically he is unlikely to die of cancer. But the statistics do not take into account the fact that his uncle and his grand-dad died of the disease at relatively young age and he probably has the same gene.

We are grateful to have caught it this early (hopefully it is actually 3+3 and organ confined) and given his family history are keen to do something about this now. We have considered seeds and surgery and if he was 60+ he would have gone for the seeds I think. But he in great health at 52 and we are not convinced how the seeds will do in 20+ years. And we see from many studies that surgery is the gold standard for the younger patient with 3+3 organ confined disease. 

Are there other people with hereditary PC here and how did this affect your decisions?

An

Posted 7/13/2010 4:13 AM (GMT 0)
I never thought of myself with maternal hereditary PCa but my mother's father, my grandfather, did die of it, so perhaps that's where it came from. Hmmmm?

While I've never heard before of maternal hereditaty PCa I have heard of some hereditary evidence, and in addition to my grandfather dying of it, my father had PCa, and a cousin died of PCa last fall, so I knew it was "in the family" so to speak. This, however, didn't play much, if any, role in my treatment decision. I'd have come to the same treatment decision, I'm sure, if there was no PCa history in my family.

However, my father having had PCa did play a major role in my being checked, and my cancer discovered.

Best wishes to you both for a life long cure.

Sheldon AKA Sleepless
Posted 7/13/2010 4:13 AM (GMT 0)
Good for you! We all wish we had numbers like your husbands.. While immediate surgery virtually guarantees you a cure, it's still major surgery and it will have major side effects no matter how skillfully performed..But at 52, you are RIGHT..There is no sense in messing around with less invasive treatments (like say HiFu) and HOPING they work. Get it out of there and get on with your lives...
Posted 7/13/2010 6:11 AM (GMT 0)
I originally read this in Ds Strum’s book and did some research on this. The paper “The complex genetic epidemiology of prostate cancer” by Daniel J. Schaid states the following:

“Hereditary prostate cancer has been defined by Carter et al. (50) as families that meet at least one of the following three criteria: (1) a cluster of three or more relatives affected with prostate cancer in any nuclear family; (2) the occurrence of prostate cancer in each of three successive generations in either of the proband's paternal or maternal lineages; or (3) a cluster of two relatives, both affected with prostate cancer at 55 years of age or younger. This definition is somewhat biased towards autosomal dominant transmission, and would likely miss some families with autosomal recessive or X-linked transmission. Nonetheless, it has been an operational definition used in a large number of studies, particularly those focused on linkage. In an effort to discriminate between hereditary and non-hereditary forms of prostate cancer, a number of investigators have applied the Carter criteria to prostate cancer cases, in order to explore the clinical features that might discriminate between genetic and non-genetic forms of this disease. No clinical or pathologic characteristics have been found to differ between hereditary and non-hereditary forms of prostate cancer (50,51), and the main difference is an earlier age of diagnosis for hereditary prostate cancer, 6–7 years (51).“

The “proband” is the person in question – e.g. my husband.

An
Posted 7/13/2010 11:13 AM (GMT 0)
An, sounds like you have a good plan in place. Bet you're glad the decision-making is behind you.

As to the genetics of PCa, research has also found that a female blood relative (mother, grandmother, etc.) who had breast cancer can also impact a man's chances of getting PCa. In my husband's case, there was no family history of prostate cancer but his mom had (and died from) breast cancer.
Posted 7/13/2010 12:25 PM (GMT 0)
Yes Sephie, it is good to have a plan in place.
The only thing that feels like a hurdle now is the Endorectal MRI - lets hope that it doesn't come up with any nasty surprises. I am a little nervous about it.
With the plan in place, we are off on a spur-of-the-moment week long trip to a tropical island. We have splurged a little and it should be a lovely holiday.
Then we will come back, do the MRI, meet the nurse at the hospital and get ready for the op. Maybe we will try to get in touch with the sexual health physician prior to the op as well.

Fairwind, thank you for your comments - with a condition like PCa there are so many options. I think we would have spend close to 200 hours researching it.

Sleepless09, the hereditary angle did affect our treatment decision, purely because it became clear that my husband's grandfather & his uncle's prostate cancer was linked to his. What I have read is that no-one is clear about the what gene carries this cancer or what the exact mechanism causes this cancer to develop but the type of cancer that these two relatives got killed them young. It's not a cancer that you want to play with and we did not think it was prudent to delay treatment.
Posted 7/13/2010 12:31 PM (GMT 0)
Just out of interest, was your husband put on anything (Lupron?) after February? Just wondering what caused his PSA to actually drop in June.
Thx!
Posted 7/13/2010 1:02 PM (GMT 0)
Gibson, I have no idea what caused his PSA to drop, it certainly was not any medication or change in diet (which has always been very healthy). The only thing that has changed is his sleeping patterns, since February I have been very insistent that he gets 8hours/night as he had plenty of sleep debt.

His Biopsy report did mention a region of active chronic inflammation in the right base portion of the prostate and all I can think is that somehow this was causing his PSA to be high and somehow it resolved itself after he gave his body a good chance to rest and fight the infection.
Posted 7/13/2010 1:53 PM (GMT 0)
Hi An.. I hope and choice you makes ends up being the right one for you. My Grandfather died of prostate cancer. We only became aware of the potential implications of that after I was diagnosed. We will be sure to be sure that our son doesn't find out the same way. Being about your husband's age, I can relate to the emotions and concerns that you must be dealing with.

I had Davinci RP 2 months ago. I went to the Rad Onc yesterday as they know there was some cells that had indeed escaped the prostate. This, the 3rd Rad Onc that i've had the benefit of advising me, said the same thing the other two had - Based on pre-op information, RP was the correct decision, and based on post-op pathology (4+3 Gleason insetad of 3+4, pos margins, bladder neck involvement, etc) IF THEY KNEW THEN WHAT WE CAN ONLY KNOW NOW - they would have advised going with radiation instead. That was a surprised to me since the prostate ended up being 75% involved.

As doctor explained to us yesterday, because the dose of radiation they will now suggest I recieve is so similar to the amount they would have given if I still had a prostate, it is like making me go through the whole thing twice - significant surgery AND radiation and the effects that can cause (even if 4-5 years down the road). So to a certain degree, it left me with a touch of "you mean I didn't have to go through all that, all THIS... I didn't have to mess with that erection and leakage issues?".

Dont get me wrong AN, I am not trying to disuade you from your decision.. I simply want to offer my perspective as another 51/52 year old guy in the direct aftermath of what you too have chosen to persue as a the best solution.

Let me throw in a few factors you may want to consider.. some good, some not so:
* My Gleason 7, 3+4 ended up being more aggressive 4+3. I think you will see many sigs here showing gleason higher after full pathology.
* In my case they too thought it was contained.. I had a 4.0 PSA.. yet it wasn't.
* All 3 Radiation Oncologists, none of which even knows the other, basically made it sound like based on MY specifics, that I had a very good chance of living a long long life.. Easy for them to say, no doubt, but certainly each of them didn't see this as a dealth sentence by any measure. Which surprised me based on some things we read in news or in chatrooms like this.

An, it sounds like your husband's status is MUCH better than it could have been.... and while I know it's crazy to suggest that you dont be afraid, I want you to know that, most likely, your doctors will end up explaining to you that you need not be thinking about how many "years" your husband has to live, but decades.

There are no promises, one size cancer does not fit all, every case is different, but this IS generally a very slow growing cancer. I wish this had been better explained to me right from the start. For what it's worth, I would make the same choice again. I wish you and your family all the best.
Posted 7/13/2010 2:50 PM (GMT 0)

An, not to throw you a monkey wrench but are you SURE your husband has prostate cancer?  In looking at his stats, it appears that you have two different readings from pathologists...one that is probably pretty normal for a man your husband's age and one from the "experienced" guy that indicates a small amount of cancer.  I don't know who your "experienced" guy is but you might consider sending the slides to Bostwick labs who does more second opinions than anyone.  I guess with the conflicting pathologies, the free psa score and the relatively low PSA score with no velocity I would recommend that you take the extra step to be sure...

Tudpock (Jim)

Posted 7/13/2010 2:55 PM (GMT 0)
The Role of Family History in Prostate Cancer Risk

 

Family History Is a Major Risk Factor for Prostate Cancer

http://prostatecancer.about.com/od/riskfactors/a/familyhistory.htm

Not sure why the link doesn't work. But if you copy and paste it, it'll work.

Posted 7/13/2010 3:34 PM (GMT 0)
Steve - that link does not seem to work.
Posted 7/13/2010 3:45 PM (GMT 0)
Thanks Jim, Bobcape

Jim, the first pathologist we used was a garden variety pathologist, the only paper he has written that I could find was on liver viruses. ASAP is not a normal diagnosis for someone my husbands age, in fact it's a very odd diagnosis and should really only be used rarely (1-2% of the time) when an experienced pathologist sees that it looks like cancer but is not a 100% sure. Everything I read pointed to the fact that many inexperienced pathologists used the words ASAP when they didn't have the experience to make a call. So we went to the pathlogist with the most experience in Prostate cancer in Australia. His biography:

He was a member of the Australian Cancer Network’s Prostate Advisory Committee and is a past president of the Australasian Division of the International Academy of Pathology. In 2004, he was elected Fellow of the International Society of Urological Pathology (ISUP). He was a member of the ISUP Consensus Committee on Gleason Grading. He is Adjunct Professor of Pathology at the School of Medicine, University of Notre Dame.

There is small chance that this guy is wrong and that my husband doesn't have prostate cancer. Or there is a chance that the biopsy has not picked up the bulk of the prostate cancer or has not picked up cancer of higher grading as Bobcape says. No one really knows which way the cookie crumbles. Given his family history and the fact that both pathologists agree on portions of his sample being suspicious for prostate cancer at the very minimum it is probably quite likely that it will turn into cancer if it isn't already. I hear what you are saying about a third opinion but it feels a bit like shopping around to get an answer that we like.

You are right Jim in saying that his free PSA is high and that is odd. I still don't know what to make of that.

His PSA velocity, if measured from the lowest point of 1.7 has a doubling time of about 3 years which is less than ideal.

Maybe we should visit a "prostate" oncologist.... 

Posted 7/13/2010 5:27 PM (GMT 0)

An, it certainly seems that your second pathologist is qualified and that you are doing your homework on this.

Everyone to their own decisions but I can tell you that if it were me with your husband's stats I would not be convinced that there is a compelling case for a potentially life changing operation at this point.  The extra steps I would be considering are:

1.  Consulting with a prostate oncologist.

2.  Considering a third pathology read because of the conflicting results.

3.  Asking about the conflicting free PSA score.  NOTE:  A recent study showed that the chances of PCa cancer were 2% with a % free PSA over 25 and a PSA less than 4 in a man under 60.

4.  Considering a PCA3 test to assess the aggressiveness of the cancer.

5.  Considering a color doppler for staging purposes.

6.  Considering a saturation biopsy...would you make the same decision if your answer was 1 in 32 instead of 1 in 12?

Good luck.

Tudpock (Jim)

Posted 7/13/2010 5:30 PM (GMT 0)
I agree with Tud above, are you sure you are dealing with a 100% verified cased of PC? Sounds like there are enough uncertanties here to warrrant further testing and perhaps even another biopsy. If I am reading things correctly, he is only showing one of twelve cores, with 10% Gleason 6 cancer? If so, that is about as minimun as you can get. Not saying that it doesnt need dealing with at some point. But it would also indicate, that unless you have other medical conditions to factor, you should have the full range of treatment choices: surgery, reg radiation, seeding, etc, and even might make a good case of AS/WW until more is none about the true extent of the cancer.

Nothing wrong with the treatment choice you are talking about, I am a surgery guy myself, I would be more inclinded to really want to know what it is I have, and how extensive is it really.

Good luck and you have our support in any case,

David in SC
Posted 7/13/2010 6:02 PM (GMT 0)
I agree with both Tud and Purgatory. There's no immediate rush so I'd take my time looking at all options before committing to radical surgery. For there are no do overs after wards and the side effects can be major physically for him and yes sorry to say there will be inevitable physical effects to ones marriage and future sex.

I have a cousin who also had PCa. He was treated with brachytherapy and is fine. Neither of us far as we know has PCa on our paternal sides. They didn't check the earlier generation much for it. We are related maternally. Neither of us have brothers but the two cousins on our maternal side are cancer free. Of the 4 of us He's the oldest and I'm the youngest. So is it in the family and a factor??? Who knows?


Also since it's been brought up please try to ignore "the I have to get it out of me now!!!!" panic that naturally we all go through initially. Not all cancer is the same or spreads as fast. PCa is for many a slow growing malignancy that is less deadly than other cancers. In fact more men die with it than will ever die of it. That's factual.
Posted 7/14/2010 4:34 AM (GMT 0)
An, like your husband, I am a youngster in this crowd. The only PCa family member I know about for me was my father's father. My mother recently was treated for breast cancer (mastectomy). With prostate cancer and a young age, I think it makes a bit stronger argument for the surgery. For me, Gleason 7, I had no option of watchful waiting. I don't knock your decision to go for the surgery, and I think peace of mind is a HUGE factor in coming to a decision. If that factor weighs heavily in your deliberations, then I would not want to dissuade you from your decision. Also, I know that once a decision is made, it takes a great load off of you, and you finally feel like you can start living again.
That said, even at my age, knowing what I know now about recovery from surgery and ED issues and the like, with your hubby's stats, I would have given serious consideration to other options, especially watchful waiting (at least for a couple years). I would definitely want to be absolutely convinced that I had PCa before I did something drastic like either surgery or radiation. It sounds like you are terrified of PCa, and I don't blame you. But in most cases, it is slow-growing, and you definitely do not have to rush into any action initially. Food for thought.
As I said, you have my blessing if you have already decided, and in any case, my prayers for the very best outcome!
God bless
Jeff
Posted 7/14/2010 4:42 PM (GMT 0)

Tudpock18 said...

3.  Asking about the conflicting free PSA score.  NOTE:  A recent study showed that the chances of PCa cancer were 2% with a % free PSA over 25 and a PSA less than 4 in a man under 60.

4.  Considering a PCA3 test to assess the aggressiveness of the cancer.

5.  Considering a color doppler for staging purposes.

Good luck.

Tudpock (Jim)

 Hello Tud (Jim),  I know you are responding An's posts, but I did have a few questions.

1.   What is a free PSA score?  Should my husband have another PSA test at his doctor's appointment July 20?

2.   Should he consider a PCA3 test?

3.  Is a color doppler needed in his case?

If these questions are too general, I will understand if you don't answer them.

Im Patient  you wrote: " It sounds like you are terrified of PCa, and I don't blame you. But in most cases, it is slow-growing, and you definitely do not have to rush into any action initially. Food for thought."  It will be almost 4 months since my husband found out he has PCa.  We are worried the cancer is growing and spreading to other organs.  Your comment seems hopeful even though it wasn't given to us.

Dear An,

I have been wondering what decision you and your husband have made.  Your husband's surgery is two days after mine.  I know you are gone now.  I hope you will enjoy your week long trip to a tropical island!  I did want to mention that Ron's (maternal) Uncle died of colon cancer, but that probably does not affect his case.  My prayers are with you and your husband.  I hope you will return home well-rested.

Best regards,

Aimzee


 

Posted 7/14/2010 8:05 PM (GMT 0)
Hi Aimzee:

I'll do my best to answer your questions but please remember I'm no doc...just another anonymous poster here at HW.  Re the things you asked:

1.  % Free PSA.  Here is a link that you might find helpful.  http://www.psa-rising.com/prostatecancer/fpsa-flowchart.htm

You can google free psa and find out plenty of info.  For your husband, who has already been diagnosed with prostate cancer, I don't see any advantage in doing a free PSA test at this time.  I commented on it in An's husband's situation because he has a very high level of free PSA which is usually indicative of no prostate cancer.  Given the contradictory data they have, I thought it would be helpful for them to ask their physicians about this.

2.  PCA3.  Here is a link re this test. http://www.pca3.org/public  The test is frequently given after a negative biopsy when a physician might still suspect prostate cancer.  The PCA3 test can provide another indication.  Also, some physicians feel that the PCA3 test gives indications of the potential aggressiveness of the cancer.  If one is considering AS, it might make sense to discuss the test with one's physician.  In your husband's case, if he has already decided to have treatment, the PCA3 test is probably not of much value.

3.  Color doppler.  This is a somewhat controversial test.  I only learned of this after arriving at HW but certainly would have had it if I had known about it before my treatment.  IMHO, this provides excellent data that can help determine appropriate cancer treatment.  So, I can't tell you what to do other than to say I would request this test if I were in your shoes.

Finally, I'll just make my usual pitch...hoping you realize that surgery is a radical treatment with major potential life changing side effects, I hope you and your husband have taken the time to investigate other treatment options.  With his stats, he should have pretty much the universe of options open to him.

Tudpock (Jim)

Posted 7/14/2010 9:16 PM (GMT 0)
Dear An38-
- you have been given some very good advice with the above listed postings
- it almost seems that due to the events in the maternal side of the family, you may be jumping the gun out of "it happened to them, it will happen to me (your husband)" response ....

- heredity is a contributing factor if there is breast cancer and/or prostate cancer in one or both sides of the family, from what was discussed by my urologist-surgeon before my RP.
- there is a DNA gene marker BCN1 and BCN2 under study that signifies an aggressive form of cancer ...
-my PSA was within the cancer society's safe guidelines for my size and age - but my DRE found a hard segment and biopsy showed 6 out of 12 cancerous
- my family's PCa was slow -they died of other diseases 10-15 years after diagnosis... mine wasn't - stage 3a....
- incontinence and ED are elements of post-op that have to be considered for a man his age... there is no turning back....

-please take your time to research all options and diagnoses - including checking PSA ( no sex or DRE 3 days prior to testing - will elevate results)
-whatever your decision - you have my support.

hugs
BRONSON
Posted 7/14/2010 9:34 PM (GMT 0)
The location where that one suspect core was harvested from is known. You don't need a 32 core "saturation" biopsy to confirm it. Your U-doc can go back in and take 6 more cores from the same area where they found the suspect one and eliminate the uncertainty...
Posted 7/14/2010 10:08 PM (GMT 0)

Fairwind said...
The location where that one suspect core was harvested from is known. You don't need a 32 core "saturation" biopsy to confirm it. Your U-doc can go back in and take 6 more cores from the same area where they found the suspect one and eliminate the uncertainty...

If it was up to me everyone would have a 3D saturation mapping biopsy. The common 12 core is only by chance it will hit any cancer and then you still don't really know much more. As one who had a 45 core and targeted cryosurgery I'll attest to its superiority.

http://alprostate.com/Documents/TFTMAPPING.pdf
Posted 7/14/2010 10:13 PM (GMT 0)
I agree with Realziggy on his post. I only wished I had had a saturation biopsy right from the start, instead of having 3 regular biopsies spread over 18 months, its possible that one 30-45 core one to start with would have found my cancer at least a full year earlier, and might have made a difference in my treatment options and the aggressiveness of my cancer. I didn't know about such things in 2007.
Posted 7/14/2010 10:52 PM (GMT 0)

Purgatory said...
I agree with Realziggy on his post. I only wished I had had a saturation biopsy right from the start, instead of having 3 regular biopsies spread over 18 months, its possible that one 30-45 core one to start with would have found my cancer at least a full year earlier, and might have made a difference in my treatment options and the aggressiveness of my cancer. I didn't know about such things in 2007.

My prostate at the time was only 28g. I knew of other patients who had up to 90 cores taken with larger glands. Needless to say sedation is mandatory for that number. The cores are taken through a perineum placed grid along with the usual normal ultrasound probe used in conjunction. I woke up with a catheter the first time left in for a whole day afterward. I thought that was awful Dave, I could never imagine doing what you have had to do with them.
Posted 7/14/2010 10:59 PM (GMT 0)
Thank you Tudpock (Jim), now I have a clearer picture concerning #1 and #2. 

I will do further research on the Color Doppler, although the doctors have never mentioned anything about it.  My husband has met with six doctors all explaining the different methods of treatment.  The only debate has been whether he should have a Perineal  Prostatectomy or the daVinci.  The doctors changed their mind and felt the robotic surgery would be the best.

David, one day I hope to read a very positive message in your signature.

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