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MY HUSBAND

mopar
Posts: 1995
Joined: May 2003

Hello:

I am originally from the Ovarian Cancer and Breast Cancer boards.  Been coming here a long time.  Now I have a question regarding my husband's situation, hoping just to get some feedback.  We don't know everything yet, but here's what we do know:

PSA one week ago:  8.5

Biopsy report:  5/12 positive cores

Gleason 3+3 all cores that were positive

Haven't had time to absorb all of this.  We see the doctor on Monday.  In the meantime, I will research to be sure we are asking the appropriate and necessary questions.  But, until then, please explain these results?  Prognosis?  Anyone have a similar situation?  And comfort and/or advice you can give would be much appreciated.

Prayers and thoughts to all of you.

 

Monika

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Hello:

This is a duplicate of a message that have now re-posted several times on other threads for newly diagnosed PCa patients like your husband.  He has a very low grade cancer and has time to make a decision, which he should take to make the right one for him.

--------------------------------

People here know me as an outspoken advocate for CK and against surgery of any kind.  I was treated w/CK 6 years ago (Gleason 6 and PSA less than 10).  You can troll the forum for my many comments on this point.  Here are the highlights of what you need to consider:

1)  CK (SBRT) currently is the most precise method of delivering radiation externally to treat prostate cancer.  Accuracy at the sub-mm level  in 360 degrees and can also account for organ/body movement on the fly during treatment.  Nothing is better.  Accuracy minimizes the risk of collateral tissue damage to almost nil, which means almost no risk of ED, incontinence and bleeding.  Treatment is given in 3-4 doses w/in a week time w/no need to take off time from work or other activities.

2) IMRT is the most common form of external radiation now used.  Available everythere.  Much better accuracy than before but no where near as good as CK.  So, it comes with a slightly higher risk of collateral tissue damage resulting in ED, incontienence and bleeding.  Unless things have changed, IMRT treatment generally requires 40 treatments -- 5 days a week for 8 weeks -- to be completed.  I think some treatment protocols have been reduce to only 20 but I'm not sure.  Still much longer and more disruptive to your life than CK but, if CK is not available, you may have no other choice.

3) BT (brachytherapy).  There are 2 types: high dose rate (HDR) and low dose rate (LDR).  HDR involves the temporary placement of rradioactive seeds in the prostate.  CK was modeled on HDR BT.  LDR involves the permanent placement of radioactive seens in the prostate.  1/2 life of the seeds in 1 year during which time you should not be in close contact w/pregnant women, infants and young children.  The seeds can set off metal/radiation detectors and you need to carry an ID card which explains why you've got all of the metal in your body and why you're radioactive.  Between HDR and LDR, HDR is the better choice because with LDR, the seeds can move or be expelled from the body.  Movement of the seeds can cause side effects due to excess radiation moving to where it shouldn't be causing collateral tissue damage -- ED, incontinence, bleeding, etc.   Both HDR and LDR require a precise plan for the placement of the seeds which is done manually.  If the seeds are placed improperly or move, it will reduce the effectiveness of the treatment and can cause collateral tissue damage and side effects.  An overnight stay in the hospital is required for both.  A catheter is inserted in your urethra so that you can pee.  You have to go back to have it removed and they won't let you go until you can pee on your own after it's removed.

4) Surgery -- robotic or open.   Surgery provides the same potential for cure as radiation (CK, IMRT or BT) but which MUCH GREATER risks of side effects than any method of radiation.  Temporary ED and incontinence are common for anywhere from 3-12 months BUT also sometimes permanently, which would require the implantation of an AUS (artificial urinary sphincter) to control urination and a penile implant to simulate an erection to permit penetration (but would not restore ejaculative function).  Removal of the prostate by surgery will also cause a retraction of the penile shaft about 1-2" into the body  due to the remove of the prostate which sits between the interior end of the penis and the bladder.  Doctors almost NEVER tell prospective PCa surgical patients about this.  A urologist had to nerve to tell me it didn't even happen when I asked about it.   Don't trust any urologist/surgeon who tells you otherwise.  Between open and robotic, open is much better in terms of avoiding unintended tissue cutting/damage and detection of the spread of the cancer.  Robotic requires much more skill and training to perform well; the more procedures a doctor has done the better but unintended injuries can still occur and cancer can be missed because the doctor has to look thru a camera to perform the surgery which obstructs his/her field of vision.

4) You may also want to consder active surveillance (AS), which is considered a form of treatment without actually treating the cancer.  You just have to get regular PSA testing (usually quarterly) and biopsies (every 1-2 years, I believe) and keep an eye out for any acceleration in the growth of the cancer.  Hopeful and Optimistic (who has already posted above) has already mentioned this and is your best source of info on this forum about it. 

I personally could not live w/the need to constantly monitor the cancer in my body.  Like most other men, I just wanted it delt with.  Some men gravitate to surgery for this reason, thinking that the only way to be rid of it is to cut it out, but I did not like the risks presents by surgery and opted for CK, which is a choice I have NEVER regretted.  I am cancer free, there is no indication of recurrence, there were no side effects and my quality of life was never adversely affected.  Other men on this forum have reported similiar results.

So, for obvious reasons, I highly recommend that you consder CK as your choice of treatment.  The choice seems obvious when you consider the alternatives but you'll have to decide that for yourself.

Good luck!

mopar
Posts: 1995
Joined: May 2003

Thank you so much for your prompt and very concise evaluation for our consideration.  We will definite keep a copy of the info to refer to, and to be ready to ask the doctor about all of these options.  Just one question:  In the second to last paragraph you mention, 'there is no indication of remission'.  I presume you meant to say 'recurrance'?  

I am so happy to hear you are cancer free!  I too am cancer free after two bouts of OVCA and one of Breast Cancer.  I pray for my husband that he will also be cancer free very, very soon.

Much appreciation. . .

Monika

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Yes, I meant recurrence.  Thanks for catching the error.  It has been corrected.

Clevelandguy
Posts: 471
Joined: Jun 2015

Hi,

Gleason 3+3 all cores that were positive, the cancer cells are scored with 3 being the least agressive, 4 a little more, ect..ect.  The first number is the most abudant type of cells and the second number is the smaller amount of cells from the biopsy.  A 3+3 is not a bad score(for cancer) which adds up to Gleason 6.  If it's all inside the prostate that's even better.  The American Cancer Society has a good online section describing all the various type of treatments for PCa.  Good luck................

Old Salt
Posts: 720
Joined: Aug 2014

1. Where are the tumors located within the prostate. All over, or just on one side (lobe)? Were any close to the margin?

2. Presumably no Perineural Invasion; but you can ask anyway

3. Age of husband? Surgery often not recommended for older men (over 70; although opinions differ on that issue).

4. Chance that there are tumors with higher Gleason score in the prostate (a biopsy is in some ways 'hit or miss')

5. Would it make sense to do any 'genetic' (follow-up) testing? Several such test are now available to get a probability of the cancer's aggressiveness

Importantly, and since you asked, the prognosis is good. If your husband wishes to be treated, there are several options. Swingshiftworker provided a nice summary.

PS: Some in the field do not even consider Gleason 3 to be cancerous; this is controversial.

 

mopar
Posts: 1995
Joined: May 2003

We appreciate all of the information and encouraging words.  After Monday's appointment I will try to post an update - might give some clarification.  Still trying to absorb all of this.

Monika

 

mopar
Posts: 1995
Joined: May 2003

I forgot to mention that my  husband takes testosterone injections weekly for hypogonadism.  Of course, once we had concerns, he stopped and, from what we understand, will never be able to take them again.  That's a huge problem, but of course, his life is more important.  I just know, from experience, that this will affect his life greatly as well - depression, muscle loss, etc., etc.  Anyone ever have to deal with a similar situation?

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

Monika,

Here are some ideas for your list of questions. Take notes or tape the conversations for later analysis at home. Surely you can always call the clinic for explanations on things discussed but still in doubt. Do not accept this consultation as a final decision on the next step. Take time and digest every thing is told and recommended;

http://csn.cancer.org/node/224280

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

A good book to guide you on radical treatments but biased through wards surgery is this:

“Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (third edition).

Gleason rate 3 and score 6 is the lowest in aggressivity. The next step will be to get a clinical stage (locating the cancer) so that treatments options can be accessed. This is done adding the biopsy findings to image studies. DRE should also be investigated  so that you can request the doctor to do a digital examination  in your next consultation. You need to inform his doctor about his testosterone injections. Hypogonadism patients can benefit from estrogens patches substituting the testosterone shots. Probably the urologist is not the proper doctor to discuss on the matter but try. You can always get a separate consultation with a endocrine specialist and bind the recommendations from both doctors.

You should start thinking in a therapy beginning with investigation on the risks and the side effects. Quality of life is in jeopardy so that your husband needs to consider a treatment that can provide cure with the lesser "unwanted" consequences.

I would recomend you to obtain copies of the biopsy report, including the size of the prostate and other tests so that you can get second opinions from various specialists.

Let us know what has been discussed.

Best wishes and luck in his journey.

VGama

mopar
Posts: 1995
Joined: May 2003

We appreciate all of your input, VGama.  We've always been proactive in our health, including second opinions, keeping notes and ledgers, and especially researching and taking our time to make any major decisions.  My husband is only 65.  And while that might seem 'old' to some, he is by no means 'old'.  Already requested a copy of the report.  He has already had a DRE.  The doctor is aware of the shots.  Shots were stopped the minute we received word on the elevated PSA, which was initiated by his PC.  Wanted to try the patches a long time ago, but prescription plan doesn't cover it.  

Will definitely check out yours, and everyone elses, references.  Having been through cancer three times myself, we are no stranger to this type of situation.  But never thought my husband would have to go through this.  Staying positive, hopeful and faithful.  Thank you again for your words of consolation.  I will post after the doctor visit.

Monika

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

When I was diagnosed with Stage 4 with multiple bone matastasis, I was a bdoy builder doing Test twice a week.  I had to stop cold turkey and started taking Biclutamide to stop all testosterone production.  I suffered greatly from the side effects of this withdrawal.  Your husband should be aware that his TRT therapy may cause him greater side effects than one who was not on TRT.  And, in any case, many suffer unpleasant side effects from T withdrawal.  I hope you husband does not have severe side effects.  And, his prognosis should be good with the test results you printed.  And always remain positive.  I had bone cancer abuot as bad as anyone can get it.  Now, 43 months later, my Uro says that at 85, the cancer is no longer a threat to me.  He also said that I was the only patient that the had that lived more than 2 1/2  years with severe matatases.  All the other patients did treatment, and I was the only one who refused all treatment except for orchiectomy and bicalutimide, and if I had the chance to do it again, I would NOT have taken the bicalutimide.  Take you time, and do not jump to hasty conclusions.  Your husband,s prognosis looks good to me.  Love, Swami Rakendra

mopar
Posts: 1995
Joined: May 2003

And on your extraordinary perserverance and strength!  Do you still exercise now?  And, if so, are you able to maintain muscle mass?  Do the side affects of no T subside in time?  

Thank you so much for sharing your testimony.  Be blessed and in good heath!

 

T3rri
Posts: 23
Joined: Oct 2016

My husband's gleason actually changed once surgery was performed. He went from a 3/4 to A 4/3. Therefore we were fortunate that we did not delay as much as many advised.  If you do consider surgery, our research showed that the surgeon needs to be expert in nerve sparing prostate robotics so that there is minimal to no issues with ed/incontinence. My husband experienced neither. We chose surgery because he could always do radiation after but usually surgery is not an option after radiation. Dr. Vipul Patel in Celebration FL is world class, has performed over 10,000 prostatectomies and is worth meeting with should surgery be an option you want to consider. There are many surgeons that want to do the robotics, but the key is nerve sparing and over 1000 personal surgeries. Good luck in your search.

 

Old Salt
Posts: 720
Joined: Aug 2014

It's my understanding that 'nerve sparing' sometimes (!) is not possible due to the location of the tumor(s).

It's true that the Gleason score frequently has to be changed once the whole prostate is examined.

Having a surgeon with a lot of practice is highly desirable, whether one chooses to have 'open' or 'robotic' surgery.

T3rri
Posts: 23
Joined: Oct 2016

surgery is not an option for everyone. Few surgeons, though, can perform nerve sparing which my husband felt was the critical difference. Even the choice between robotic and open depend on the individual.... does help to share experiences though. 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Monika and T3,

Note that both of Old Salt's observation here are correct (as always):

1. In some situations, even the best surgeons cannot spare the erectile nerves. But, in most of these cases, the nerves would have needed irratiation anyway. Further: A man can remain impotent a long time after RP, or even permanently, even with successful nerve sparing, but radiation also renders some men impotent. And, at 65, your husband is no 'kid' regarding sex -- an age when most men have some imparement, even with no prostate disease. I was 58 at time of surgery, with no ED at all prior to the surgery, but was totally impotent for six months following.  I now, about two years later, have no ED, and do note even take Cialias any longer. My specifics are probably close to the norm.

2. It is not uncommon, after a pathologist has been able to study the gland in a lab, that the patient's Gleason was higher than earlier thought, and also that the Staging was higher than initially though. My own surgery proved the latter...  I view this certitude a benefit of surgery as a modality....I tell patients that if you're a little bit neurotic, surgery is a good choice !  

Many writers here want certitude, or absolute guarantees; I am not referring to either of you two specifically. But there are no such guarantees in dealing with cancer, any cancer.  I refer to myself as a "Double-Boarder" also, having had a much worse time with lymphoma than I ever have had with prostate disease.  There is never certitude regarding cancer or the status of a cure.

max

mopar
Posts: 1995
Joined: May 2003

For those who asked, here is the official summary on my husband's biopsy report.  Maybe this will provide more specific information for you.  We will be reviewing all of your comments, suggestions and recommendations this weekend.  So, maybe this will intiate some other responses.

"Positive cores 5 out of 12.  Highest Gleason grade 3+3=6 (ISUP Group 1).  PSA 8.75.  DRE normal T1c.  According to NCCN guideline this tumor would be considered low risk.  Speculated TNM stage = T1c NO MO.  No perineural invasion or extra-prostatic extension identified."

Hope this helps to clarify.  Thank you all again.

Monika

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Monica,

The biopsy report mostly repeats your initial post, but ya gotta go with what information you have.

Per the Gleason, his cancer is currrently low aggressivity, if you use just Gleason data.  But you do not share his vectoring rate ("doubling-time" -- the net change over a year).  As a static number, his PSA is still a little high, although BPH, etc, can infulence this.  His volume is relatively widespread (5 cores).

While a normal DRE is better than an abnormal one, a DRE does not access or give any information on the front half of the gland.  All of my DREs were normal, with T2 disease.

His scores are identical to, or worse than, mine, and I had Stage II PCa.  My PSA was never over 4.1, had a low vector rate of about 18 months, and I only had one core positive, and at only 5% of that one core.  To caluclate his vector, you need another PSA result from a year ago.  If his PSAs are not exactly 12 months old, the result can still be extrapolated mathematically.  For instance, if he had a PSA of about 4.2 12 months ago, his vector would be "One Year." Or, if he had a PSA of 4.2 six months ago, his doubling rate would be "Six months," and so forth.  Obviously, the faster it doubles, the more aggression is indicated. 

Basically, my biopsy under-detected my disease. Not uncommon at all.  False negatives (the biopsy missing tumors) and underestimation of PCa are common.  False positives or over estimation, very rare.

IF I were looking only at his volume result and his static PSA, I would be monitoring him closely, and consulting with at least one other oncologist for a second opinion, preferrable not another urologist, but a Radiation Oncologist.

max

Old Salt
Posts: 720
Joined: Aug 2014

Just repeating what others have mentioned: there is ample time to consider your husband's options (see the 10/21 post of Swingshiftworker). And yes, the 'velocity' (rate of PSA increase) is a relevant parameter as well, as Max pointed out. 

Please feel free to ask further questions.

mopar
Posts: 1995
Joined: May 2003

I have been trying to get his PSA from last year.  The doctor's office claims he never got the test (even though the doctor ordered it), but we know he did.  Records at the lab have been transferred to another location, so we're working on that.  That's the first thing I thought of - get the last few reports to see a trend.  Other than this year, the most recent I have is 2010, and I KNOW he's had more since.  Working on that diligently.

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