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Libitina1971
Posts: 10
Joined: Jan 2013

I am posting this on behalf of my father who is not computer savvy.  My dad is 70 years old and has enjoyed fairly good health.   My dad has always been very good about getting yearly checkups and PSA's. My dad's prostate exam was normal and his PSA was 6.38.  Since this was a slight elevation from last year, he ordered a biopsy, thankfully.  Today we went for the results and my father was diagnosed with prostate cancer.  His stage is T1C with a Gleason of 7 (3+4) on both sides of gland.  One positive core on left side and 4 of 9 positive on right.  Perineural invasion not identified.  High grade prostatic intaepithelial neoplasia on both sides as well as focal acute and chronic inflammation on right side.  

His urologist recommended two options.  One is hormonal therapy followed by radiation, the second one being a prostaectomy.  My dad is 70 years old and has enjoyed fairly good health.  My friend is an oncologist and agrees with either recommendation.  

Our questions/ concerns are what are the pros and cons of both options?  We have talked to several people who say that their main gripe with the removal of the prostate is what it did to their sex lives.  My dad says that is the least of his worries.  He has also heard from one friend that he will have to wear a diaper for the rest of his life.  

We would love to hear the opinions of many of you that have chosen the different options.  Would you do things differently?  Did you expect your end result or did anything (risk or recovery wise) surprise you, etc?  

Thanks so much and best wishes in your recoveries as well.

 

ralph.townsend1's picture
ralph.townsend1
Posts: 352
Joined: Feb 2012

Being at the age of 70 I would try Hormonal therapy (Lupron) and check the psa in six weeks. If it has decrease, I would watch it for another six weeks and check again. If it goes down, don't do the radiation, because of it damaging effect. If goes up  then Radiation, but might not work. In my case it was a hit or miss, of course a miss and the damage to my nerve system in that area was bad,now going on 3 yearsUndecided.

Last line of defence is to removal of prostate. Use Da Vinci Robotic surgery is less evasion

God bless, and prayer's with you!!!

 

 

Libitina1971
Posts: 10
Joined: Jan 2013

Thanks so much for  your advice!  I will share it with my dad tomorrow.  A Dr. in our area specializes in the DVR surgery.  I will read up on it.  Best wishes on your journey!  Prayers for you as well!!

 

Samsungtech1
Posts: 350
Joined: Jan 2011

I had RP, but we knew it had already spread.  My doctor and I decided to get rid of the prostate to eliminate the spread.  It had already spread to lungs and bladder.  Been an interesting couple of years.  

My own opinion would be HT and radiation.  Depending on the Dr.'s choice he will get a shot in the stomach either every 28 days to every four months.  Side effects vary.  Not sure what type of radiation they would use, you did not mention this.  You need to find this out.  They used broad spectrum radiation on my bladder, and 2.5 years later I am experiencing fissures in my anus that are the most painful thing I have experienced, and it will get worse.  They do not tell you alot of these things before.  It just starts happening and then they tell you. Sorry to be so blunt, but you need to know.  Short term is one thing, but down the road you find out some of the things they forget to tell you. I am sure it is intentional.  They do not tell you that when they do an RP that when they reattach the penis because they took out the prostate your penis will be shorter.  If they take out everything then it does not matter.  Lots of things they do not tell you.  

I am an extreme example due to the agressiveness of my cancer.  Out of couriosity did your Oncologist friend mention any of this?

 

mike

Libitina1971
Posts: 10
Joined: Jan 2013

Thanks so much for your advice!!  I will share it with my father tomorrow.  My friend did not mention any of it.  Honestly, I texted her what the path report said and did not speak to her yesterday.  I will try to sit down with her next week for some advice.  I did speak to an oncologist nurse practioner friend yesterday and he advised against the surgery and for radiation.  His main argument was sexual function.  My dad told me that he doesn't really have a sex life anyway so that wasn't a concern.  The fissures are a concern that I will share with him, he is not good about taking fiber so....you know where I am going with that....  best wishes and prayers to you Mike in your journey!!!  Thanks again!!

hopeful and opt...
Posts: 1304
Joined: Apr 2009

Second opinions, diagnostic tests and informing blood relatives

There is a higher likelihood of prostate and breast cancers among blood family members, so please inform all so they could be tested.

Good idea to have a second opinion on all diagnostic tests, especially the biopsy. Determining the Gleason score is subjective and all pathologists are not equal, so you want to send the slides to an expert pathologist who specializes in only prostate cancer for a second opinion.

The more information that you have about your fathers condition, the better the treatment decision that is made. The below is copied from another recent thread the bottom line in my laymans opinion is to have an MRI with a high power magnet, a Tesla 3.0 will do the best job that I know. This will show extracapsular extension or not. This is critical for your treatment decision. ( So for example if there is extracapsuar extension hormone therapy is appropriate and localized treatment such as surgery or some forms of radiation are not appropriate.

The traditional scintigraphy scans such as bone and typical CT do not perform that well to locate small tumours or colonies that produce low PSA levels of less than 10. These equipments got limitations (low resolutions) in detecting small sizes less than 1 to 2 mm." ...by Vascoda Gama

 

 

"Newer modalities with better contrast agents like C11 acetate and F18, in cross information data base done with PET and CT or MRI can perform better with more accuracy. Tesla 3.0 suggested by Hopeful may be the less standards one should consider in a negative diagnosis."..by Vascoda Gama

It is very important for you to have proper diagnostic testing so that you will know if there is extracapsular extention or not.........your treatment will be dependent on this information.

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

Also research, research, research by reading books, internet, local support groups.

 

Libitina1971
Posts: 10
Joined: Jan 2013

Thanks so much for your advice!!  I will share it with my father tomorrow.  Interesting what you said about the imaging that definitely gives me a direction to start advocating for him.  Best wishes and prayers to you on your journey!!!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Libitina,

 

Sorry to read of your father's diagnosis.  You've already been exposed to a wide differnce of opinion on what might be the best option for your father.  It seems like there are about as many options and opinions out there as there are prostate patients.

From my own perspective, I would absolutely not even think about removing the prostate with this diagnosis.  The potential side effects at your father's age, not to mention the risk of this major surgery iteself, could have a disastrous effect on your father's apparent lifestyle.

I disagree completely with the one who suggested that radiation had side effects and that you should avoid it.  Huh?  Of all the possible treatmenet courses besides active surveillance, which is not really appropriate in this case, radiation offers the least amount of side effects and offers a strong chance of removing this as something your father should ever have to worry about again.  I had SBRT (CyberKnife) radiation in June 2012 and have had zero side effects and my urinary continence, sexual function, and so forth is as good as it was before the procedure.  There are several types of radiation and I would encourage you and your father to investigate IMRT, brachytherapy, HD brachytherapy, and SBRT options.

Frankly I would seek second opinions about the hormone treatment.  If radiation fails to curb the cancer (which appears contained in the gland from the details of the biopsy report you shared), the HT is going to introduce many adverse side effects into your father's quality of life such as loss of sexual function, hot flashes, potential weight gain, depression, and other possible symptoms.  Doing it at this stage just doesn't make sense to me.

But, as I mentioned earlier, there are many opinions.  I hope your father bases his decision not on what some unknown person on the internet might suggest but only after careful study and review of the fundamentals of prostate cancer, how it develops and spreads, and the real side effects of the various treatment options touted by the many experts out there.

Please seek second opinions that are not friends of the family.

Best of luck to you and your family.

 

K

Libitina1971
Posts: 10
Joined: Jan 2013

Thanks so much for your advice Kongo!!  I will share it with my father tomorrow. Your post as well of those on this journey with you have given me a wealth of information to share and consider.  Who knew there were so many options in radiation?  I appreciate you!!  Best wishes and prayers on your journey!!

 

Swingshiftworker
Posts: 633
Joined: Mar 2010

I agree w/Kongo.

Libitina1971
Posts: 10
Joined: Jan 2013

Thanks so much for your opinion!!  I will share it with my father tomorrow.  Best wishes and prayers on your journey!!

 

Libitina1971
Posts: 10
Joined: Jan 2013

Thank you so much for your opinions/ advice gentlemen1  This is exactly what I need.  This is a wealth of helpful information and viewpoints I will sit down and present to my father tomorrow. I know treatments vary from across the country.  We live in Southeast Tennessee.  He has an appointment for a second opinion with another Dr. on the 18th.   If he should choose the surgery the doctor that comes highly recommended came here from The Cleveland Clinic and is supposed to be one of the best in the area using the  da Vinci Surgecal Robot that someone mentioned.  

Are most of the opinions for not having the removal, sexual performance complaints?  My dad said that his sex life is non existent anyway so it seems that he is more worried about urinary complaints.  The doctor yesterday said that 10- 15 years out the complaints from radiation patients were about the same as the complaints from the patients that chose the removal.  Does that sound accurate?    Also, he said that the survival rate of removal patients was about two years longer than those that chose radiation.  My father was also told that the only way to know if the cancer was truly contained in the prostate was to examine the removed prostate in the path lab and check for any PSA values in his blood because imaging would not show if the cancer margins were actually outside the capsule. 

Thanks again guys!!!  My best wishes to you all!!

 

hopeful and opt...
Posts: 1304
Joined: Apr 2009

robotic surgery is not appropriate if the cancer has left the capsule, so you need more diagnostic tests. at this time. Pca is very slow growing, there is time to do the proper diagnostic tests before making a decison on treatment.  You will have a pretty good indicaton if the cancer has left the cazpule after testing.

Additionally robotic surgery is age dependent,, that is a there is greater success among younger men.........older men, like your father have a greater incidence of incontience and ed after surgery no matter how excellent the surgeon may be.

Anyway if one examines the prostate and surrounding tissues after surgery to find out if the cancer has escaped and come up with an answer it is too late........the treatment has been done. So if the cancer has escaped more than one treatment will be done, and your father will be subject to possible negative consequences of each treatment, this can be cumulative.

Libitina1971
Posts: 10
Joined: Jan 2013

If you were me what test would you insist on as the doctor said that imaging doesn't really show anything?  I will also reread your earlier post again.  Dad called me this morning and has noticed a bit of blood in his urine.  I told him that it may be from the biopsy but I am not so sure because he is ten days out from the procedure.  I googled it and blood in urine is a sign of later stage PC.  The more I think about it he may have went back on his aspirin regimen and mom said he carried a clothes basket full of clothes down the steps yesterday for her, so maybe that's related.  If not, I am scared that his cancer is advancing fast.  I know his Gleason was 3+4 so a 7.  I just can't find any information as to how fast this disease advances.  Thank you again for your help/ advice.  

 

 

hopeful and opt...
Posts: 1304
Joined: Apr 2009

For a while after the biopsy it is common for blood to be found in urine and semen.

"doctor said that imaging doesn't really show anything?"  this statementi s incorrect. I suggest that your father go to a major center of excellence where there are facilities for state of the art diagnostic tests and treatment, and personnel who are highly qualified. 

I think that you said that you are in Tenn. I am not in that area of the country, so I cannot suggest a facilities that is closest to you. US News and Report has an annual ranking of facilities by various specialties such as prostate cancer.

Prostate cancer is generally very slow growing. In fact in some cases where a man has a low volume of 3+4=7, Active Surveillance is appropriate if the man has less than a 10 year life expectency.

Libitina1971
Posts: 10
Joined: Jan 2013

Thank you again for your reply!!!  I am going to check the US News and Report to see what we have close and if our hospital and doctors rank.  I appreciate your advice and direction on this.  As you know cancer is a scary thing to face especially the first steps when one still doesn't know much information or have experience behind them.  I know when my dad heard the "c" word his mind went back 40 years when my biological mother was diagnosed with ovarian cancer (she was 25) and died after a short five month battle.  He was left with a five month old baby (me) and two little boys under five.  That has always haunted him.  May I ask you something else?  I have always know that  I am at greater risk for ovarian cancer, does my dad's diagnoses of PC increase my brothers' risks and also increase my risk for OC or breast cancer?  I'm not sure if you would know this or not but you seem pretty educated on the subject.

 

hopeful and opt...
Posts: 1304
Joined: Apr 2009

 prostate cancer among blood family members such as sons, brothers. I suggest that you contact other family members to include cousins.  There is also a higher incidence of prostate cancer among African American men.  Guidelines advise testing at age 40, this includes an annual psa and digital rectal exam, and any other test which may be germaine. If any of these men in your life are under 40, say 35 a test is appropriate to determine a base line.

Although not a direct correlation has been determined, epidimology studies show a tendency toward non heart healthy diets and prostate cancer. Many of us have changed our life styles after diagnosis. You can read other theads about diet at this site.

Breast Cancer...there are some studies that show a correlation. There is a gene, I don't exactly rmember the name but it starts with a b(I hope that another poster will add to this ) For example there was one done at Albert Einstein Medical Center in NYC where a correlation between bCA and pCA was shown among askensi jews in  in 2009.

So get your mamogram and eat heart healthy.

Libitina1971
Posts: 10
Joined: Jan 2013

Thanks again!!  Blessings.

silverfox1
Posts: 36
Joined: Dec 2010

I, like Kongo and swingshiftworker, chose Cyberknife Radiation as my treatment for my PC.   I have not had any issues from the treatment.  It will be two years this March and my PSA has dropped to a 0.2 from the pre-treatment of 4.4.  I was 66 at the time of my treatment and other than the process of placing the fudicials in the prostate the process was a piece of cake.  You have time to look at all options and make your decision based on what you are comfotable with. 

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