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Dad newly diagnosed

kkornegay
Posts: 5
Joined: Feb 2014

My Dad was just diagnosed Tuesday with Prostrate Cancer.  He went for a follow up for the TURP procedure and was told then.  The doctor had found a blockage when he went in surgery but felt it was from a procedure done in the office.  The dr said he sent the sample off while in surgery and they waited and it came back negative.  We thought we were in the clear until he was told different.  I have a copy of the pathology report and have been reading up on this.  His Gleason Score is at a 9.  The urologist has him coming back to him on March 11th and then he will refer him to an ocologist.  Does this sound right?  If a GS of 9 is VERY agressive, shouldn't we be contacting an oncologist sooner than 2 weeks to see if it has spread?  I think the Urologist is waiting to give him more time to heal from the TURP.  Any information would be greatly appreciated.  

 

Thanks!

VascodaGama's picture
VascodaGama
Posts: 1519
Joined: Nov 2010

K

Welcome to the board. I am sorry for the positive diagnosis of your father.  Embarassed

Gleason score 9 is high and he should act fast to start a treatment, but further analyses and testing is required before defining on a definite procedure. Two weeks waiting for an appointment is not exaggerated because cancer does not spread overnight. Prostate cancer permits us time to educate ourselves on the disease and its treatments. While waiting I would recommend your dad to do some investigations about the problem, preparing a list of questions to expose it to the oncologist he is visiting. I also would recommend him to get second opinions on the diagnosed specimens to confirm his status.

Can you share more information about him and previous conditions that took him to have TURP?

What is his age and what symptoms did he experience? Just blockade when urinating?

What is his PSA level?

Has he been on any medication/treatment before diagnosis of PCa?

What does the pathologist report comment apart from the Gleason score? Any information regarding the type of the cancer (there are more than 24 types of prostate cancer confirmed; some are more difficult to treat).

I think it better you consult a medical oncologist specialist in PCa and get tested at modern competent facilities.

Here are some links that may help you;

For a List of Questions;
http://www.cancer.org/Cancer/ProstateCancer/DetailedGuide/prostate-cancer-talking-with-doctor
http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

A compendium on Prostate cancer and care;
http://prostate-cancer.org/decision-aide/where-to-start/prostate-basics/

Booklet about biopsy;

http://www.prostatecentre.com/sites/default/files/Prostate_Cancer_Patient_Education_Booklet.pdf

 

Books about treatments;

A “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (third edition); which may help you understanding options between surgery and radiation.
“Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers; which informs on diagnosis and Hormonal treatment for systemic cases.

Many survivors in this forum can help you with better opinions but you need to share more details about the condition of your father.

Best wishes and luck in his journey.

VGama  Wink

kkornegay
Posts: 5
Joined: Feb 2014

my dad is 78 yrs old. he started having problems with frequent urination years ago. he has been losing weight for several years as well but the primary care dr wasn't too alarmed since it wasn't ALOT of weight.  The urologist said he had a REALLY large prostrate.  Last October he went for CT scans and the dr said negative on cancer.  Just the enlarged prostrate.  He did the cystoscopy and gave him medication to try to help him completely empty his bladder.  That didn't help so he had the TURP done 2 weeks ago.  I called the urologist yesterday to find out if we could at least get referred to schedule a consultation with the oncologist but the very rude nurse said no.  She also stated that the dr has written in the chart 6 weeks and then refer.  I understand it takes time to heal from the TURP but am concerned we are giving it time to spread (if it hasn't already).  I called the oncology center and they said that they cannot make appts without the referral and that they are scheduling appts anywhere from 1-4 weeks out.  I am trying to get my Dad to call or go down and INSIST they at least go thru with the referral now but schedule the appt for the time when the dr feels he will be healed.  Not trying to step on the dr's toes and get him in before he is healed, just want an appt so we won't have to wait for the 6 week HEALING time and THEN wait 4 more weeks for an appt.  I do not know what his PSA is... my Mom said she hasn't seen any paperwork that shows it has been tested.  We have the followup with the urologist on March 11th.  The pathology report didn't show much other than adenocarcinoma of prostrate and then Grade IV+V (Gleason score 9) and carcinoma involves 25% of submitted tissue.

Thanks for those links. I will definitely read them all and make my list of questions.  My only worry is that waiting NOW 6 weeks and possibly another 4 weeks for an oncology appointment, is that it will spread.  My Dad was pretty depressed yesterday but we talked this morning and he has a "bring it on" attitude.  

 

Thanks again

hopeful and opt...
Posts: 1283
Joined: Apr 2009

As you are aware Gleason 9 is high, and if this number is correct, it is very likely that the cancer has escaped the capsule. Surgery will not be appropriate for two reasons; first, even if a surgereon does an excellent surgery, the results for older men are more likely to have side effects such as incontinence and erectile dysfuncion than a younger man, and, second, there will still be cancer that has already escaped the capsule. The effects of procedures that are done are cummulative.

Here is a thread that has discussed the above and other information critical to your father.  http://csn.cancer.org/node/258414

I wonder that when the surgeons office mentioned that they want to wait till you heal from the procedure before referring you if   this is self serving, and the office wants to do a prostate surgery for you which in my lay opinion is unnecessary.

I strongly suggest that you have a second opinion on the pathology of the slide by a world class pathologist so that you are not under or over treated. Simply call the doctors office and ask that these results be sent to a world class pathology organization such as at Johns Hopkins.

It is important to have all the records pertaining to your father, so that it is available to consult with other doctors.

You will want a Medical Oncologist to head your fathers medical team. You will want the best that you can afford, teaching hospitals in general are a good source. Try to attend a local support group for prostate cancer for leads to the best medical personnel. The sooner that you find one the better.

 

BLUEpac6
Posts: 31
Joined: Jun 2012

To make along story short in Jan.2009 I fond out my psa was 110 .It was may after a biopsy Ifound out my gleason score was 8 and agressive carcinoma.Bone scan was negative.Sent to arobotic surgeon and he would not even talk about surgery said the cancer was out of prostrate and would be to dangerous so I was sent to a uncologist and he recomended putting in seeds and 35 radiation treatments.this was in may 2009 and scheduled the radiation for aug.2009 after taking a hormone shot you have to wait 90 days before radiation can begin.Idecided to go cancer tretment center treatment center of america in oklahoma for a second opinion and they said surgery would be to dangerous an only do radiation.They did acatscan and mri which nothing but a hump extending out of prostrate.So Iwent home thinking I was going to have the radiation treatments.A friend of mine whose daddy died with prostrate cancer in the seventies was worrid about me was in his urologist office was telling him about me and he caled me right then and said if you have radiation and cancer returns there is not really a cure left the prostrate needs to be removed so if the cancer returns then you can have radiation.This depends on the cancer not already in the bones or lymph nodes which mine was not.He put me in touch with Dr. seth Lerner baylor clinic houston and he scheduled me for surgery aug.2009 and would open me up and check my lymph nodes and if thry were clear which they were he removed the Prostrate.Inever really had any pain from the operaton or any problems other than I have not regained sexual function.My psa stsyed low till in june 2011 it was up to.06 and was told I would need salvage radiaton which I did 35 treatments starting june 2011 with no side effects and really never felt I was getting radiation.Ever since my psa has been less than 0.01 and monday feb.24 2014 Ihad my 6 mo. checkup and my psa was less than 0.01.I feel fine and never felt I had cancer except having to go through surgery and radiation.He has time to make a right decision .As long as it is not in his lymph nodes or bones he has choices.Ipray he does fine.

VascodaGama's picture
VascodaGama
Posts: 1519
Joined: Nov 2010

K

I am appalled for the way your dad’s doctor’s stuff has treated your questions. Maybe they just follow the orders from the “boss”. The worse in the care of a cancer patient is to be dealing with stubborn doctors. Maybe he has established 4 weeks for healing from TURP but your dad can start some of the tests now leaving the ones not proper at the moment to be done later.

Any inflammation from TURP will cause the PSA to increase rendering this important test unpractical for the moment; however, I believe that his doctor did several tests apart from the PSA and CT, before starting the surgery. He may have additional data at his office that is important for future examinations and decisions in the care of your father. I would recommend you to add to your List of Questions exactly an item requesting copies of all tests, CT and related information. This is a MUST DO thing when dealing with cancer diagnosis. You can help your dad by keeping a file with all the data.
The patient is the one assuming any and all responsibilities for any treatment and outcome. One will have to sign an agreement to safe keep the doctor and the establishment from any wrong decision, before the commitment.

Your comment regarding the CT scan in diagnosing cancer is incorrect. CTs do not diagnose prostate cancer (neither do cystoscopy). Image studies provide clues on unusual deformations. Biopsies diagnose cancer. In your dad’s case the dissected specimen (portion of prostatic tissue) was analysed and found to be 25% cancerous.
Most probably his doctor has initially diagnosed the condition as Prostatic Hyperplasia judged as the cause for obstructing the flow of urine. This can became an emergency procedure when one does not empty the bladder during days because it would deteriorate the kidneys, leading to a worse status. What is intriguing is that doctors do not hold a TURP procedure in the middle to look for cancer (as you mentioned above). They do that in prostatectomies to certify the worthiness of the procedure if cancer is found to exist outside of the gland (at the close lymph nodes). They would interrupt the surgery to analyse a lymph specimen. If found positive, then they would stitch him up and proceed with radiation later.

A note of caution goes for this doctor’s intention in delaying the appointment with the oncologist. He may want to check if TURP alone did dissect the whole cancer tissue making further treatment unnecessary.  Innocent

 

I do not know if your dad is healthy or has any other ailment such as heart problems or anemia condition, etc, which sometimes is common at guys of his age. In any case, over 75th are not usually recommended for radical treatments because of the risks and treatment side effects that would prejudice is quality of living. The NCCN guidelines for the “young guys” recommend palliative therapies instead of treatments with intent at cure. The typical palliative for prostate cancer is hormonal manipulations that can control the disease during many years “allowing” the patient to die from other causes. Healthy comrades do sometimes choose radicals (surgery or radiation) when the cancer is still contained (within the gland). When metastases are apparent and the Gleason score is high (8 to 10), then radiation is reserved to treat pain in future when this becomes unbearable to the patient.

For any decision one must firstly obtain a proper diagnosis with the “whole ingredients” to get a due clinical stage. From there one must know about choices, their risks and effects, and follow what one most believes. Our guide should be a doctor we trust that attends our queries and satisfies our eagerness for information. This is the work of a medical oncologist.

At this time of healing, MRI image studies are not recommended but a bone scan is and should be done to access bone metastases. A DEXA scan is also recommended for checking bone health (osteopenia/osteoporosis), which is part of the problem in having PCa because it spreads usually to weak bone. Bisphosphonates may be needed and these may interfere with other medications in the treatment of PCa or other, if any.

Testosterone is a test that he can do now. This is a marker required when one chooses hormonal treatments. Lipids for diabetes and heart health (ECG, etc) are also recommended in the “overall” aspects when dealing with PCa.

I wonder where your dad lives. In the US you got excellent centres specialized in PCa. Stubborn urologists are more common in Europe where they believe to be kings.

Hope he recovers fully from the TURP.

Wishing peace of mind to you and your family.

VGama  Wink

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

Vasco,

Again you provided some excellent advice.  I too was aghast at the attitude this doctor's office displayed.  Unfortunately this is all to common with overworked staff when they deal with elderly patients and their families.  Every doctor's office should prominently display the required notices about the Patients Rights and patients should be aggressive in getting good treatment and seek advice from others if they are not getting what they want for their medical team.  

It is often complicated with offspring are trying to find out information about their parents condtions and options if there aren't specific, written directions on the part of the elderly patient.  This would probably be a good idea at this point as well as gathering all the necessary medical records.

Many patients feel they must have a referral to visit another doctor.  This isn't required.  In my own situation I just picked up the phone, explained my situation, and made the appointment.  Having your own records is essential to do this.

While the PSA test may be unreliable now so soon after the TURP he should be preparing for follow-on treatment options that an oncologist will likely prescribe.  

 

K

kkornegay
Posts: 5
Joined: Feb 2014

Thanks for your reply. We went back to the urologist yesterday and got a referral to a radiation oncologist.  The doctor said that my Dad is not a candidate for the brachytherapy b/c due to the complications he would be left with (incontinence).  He is recommending external beam therapy.  My parents do not always get things straight or often forget so therefore, my sister and I HAVE to contact the doctor or be there ourselves to get the information correct.  We are not offsprings (as stated in someone else's post) that just want to be nosy.  Plus we will be the primary caregiver for appointments and such.  

The doctor said yesterday that he will leave it up to the radiation oncologist whether or not to order a bone scan.  He also said that Dad's cancer is T1A MXMX.  
My Dad is in great health otherwise.  He lives in South Georgia and I in North Florida (we are about 30 miles apart).  The receptionist is waiting on the doctor to transcribe and then she will copy his file and fax it to the oncology center across the street from his office.  My Dad will have to be "accepted" and then an appt will be set.  We are going to give them til Monday to have an appt for him.  If they do not or the appt is too far out, we will call and have his records transferred to Tallahassee, FL (where I live).  I have spoken to them and they did say that you don't have to have the referral with them but it is nice so you have the records.  They said they usually get patients in for a consultation within 2 days of receiving their file.  Have you heard of Tomo-Therapy?  Wondering the pros/cons, differences in that and the External Beam Therapy.  Tomo-Therapy is offered in Tallahassee but not in the town my Dad is in.

Thanks again for your comments.  

 

Oh.. and I did tell the doctor about his nurse.  She didn't weigh my Dad or take his BP yesterday. Pointed down the hallway to a room and walked away. I was coming down the hall helping my mother and my poor Dad was lost... didn't know which room to go in.  I had to look at the forms in the tray outside the room to see which room. The doctor apologized and thanked me and said he can't do anything about it unless he knows about it.  I just explained that when patients find out they have cancer, they are very emotional, scared and frustrated, and a little compassion would be nice.  I also told him I hope she never has to experience what we did.

 

richardlvance
Posts: 10
Joined: Aug 2010

If the oncologist thinks the cancer is localized I recommend a run for the University of Florida proton center in Jacksonville, FL.

Meidcare pays for this most excellent of all treatments for localized PC.

 

Richard

VascodaGama's picture
VascodaGama
Posts: 1519
Joined: Nov 2010

K

I like the way you move. Taking the lead when needed and allowing the professionals to handle their job as they recommend is good. All what you have to do is to keep a track on things as they move forward.

It seems that the present doctor is “washing his hands” on your dad’s case. I hope the radiologist is more sensitive and that your dad, you and your family gain some confidence on the matter. Interestingly, your dad clinical stage is not T1a but T1b because the presence of cancer was higher than 5%. NX and MX is attributed because they did not do investigate further. Tests and image studies are missing. Please read this;
http://www.psa-rising.com/prostatecancer/staging.htm

You should try getting more information about PCa, probably using the net for researches and discussing all matters with his new doctor.

TomoTherapy is just one technique in delivering radiation in a machine that incorporates a CT and IMRT at one unit. There are many other options but the choice of any depends on the status of the patient. Before deciding one should check about other available techniques taking into account the risks and side effects of the treatment and surely the levels for reaching a better outcome. In this link you got a list (on the left side) with short explanations which may give you an idea on each process of radiation therapy;
http://www.cancercenter.com/treatments/tomotherapy/

In any case, you should firstly get the opinion of the radiation-oncologist and most important, get the series of test done before anything. A better diagnosis will lead to better decisions and better outcomes. Second opinions are also a must in treatment decision.

A note on RT protocols goes for the period of the treatment. These are usually for daily administration which sections periods can last two months. In such a type of treatment the patient would need to travel every day (except Sundays) to the facilities, therefore, close to home may be better.

Best wishes for a good outcome.

VGama  Wink

kkornegay
Posts: 5
Joined: Feb 2014

So, we met with the oncologist and so far they have been awesome.  Dad has had one hormone shot and is two weeks into his nine weeks radiation therapy.  He is slowing down in the afternoons but so far that is the only side effect. A little bit of diarrhea too.  The oncologist ordered a p.s.a before he began treatment so he would have a starting point since his urologist never ordered one.  He had a p.s.a with the family doc January 2013 and it was 1.3.  It was a 1.6 this time. The other oncologist in the office was standing over the nurse when she pulled up the results on the computer and basically said we may have caught this early enough. My Dad just had labs last week thru the VA and it shows the p.s.a at 0.588. I dont want to get my hopes up but with the p.s.a dropping this low and this fast, is this a good sign?  Thanks to everyone who contributes on these discussion boards....  It helps to hear from people who are going thru the same situations.  

VascodaGama's picture
VascodaGama
Posts: 1519
Joined: Nov 2010

K

Finally we got numbers and the values indicate some improvement. Your narration on the “hidden” PSA data makes me feel as I was reading a thriller. What did the oncologist saw “over the nurse” to comment that “...we may have caught this early enough” ?

The PSA of January 2013 at 1.3 ng/ml would have been considered low (normal) in a 78 years old guy. The difficulty in urination at the time and probably pain may have leaded the urologist to consider him with a BPH case. The CT image of October 2013 was the trigger used by the doctor to do the TURP, even without a PSA or other testing. He followed his instincts or did have other “hidden” test data that you don’t know. But the prostate specimen analysis (from TURP) in February 2014 “luckily” was done diagnosing a highly risky type of cancer, Gleason score 9 (4+5). In April 2014 the PSA stayed at 1.6 ng/ml, just before the start of the salvage combo therapy (HT + RT). The last PSA test of May 2014 was lower at 0.588 ng/ml, and you are not sure if the fast decrease of PSA in one month is to be celebrated or if that is a result to be concerned.

I think that the number is to be celebrated. The PSA is the only marker at this time that can show improvements. You are still at the beginning of the treatment and you need to wait a couple of years to get down to a satisfying outcome. I hope that the oncologist’s comment was correct.

You did not share info on the date of the hormonal shot neither how far was it administered before the start of the radiation but I think that in your dad’s case, still with part of the prostate in place, the radiation would cause initially a temporary local inflammation which would made the PSA to increase. Patients without the prostate usually experience a faster drop in PSA after the radiation; however, the hormonal treatment slows down the activity of the cancer which justifies the drop in the PSA.

In fact, cells classified with Gleason grades of 4 and 5 are thought to produce lesser PSA serum and such could mean that your dad’s initial 1.6 was high. The fast drop to 0.588 is consistent with hormonal LHRH agonist and antagonist shots. The PSA can drop 80% in one month since its administration.

Testing the PSA while in the radiation treatment is pointless. This marker is very sensitive and may vary on daily basis. Its fluctuation curve from periodical three-month tests is more reliable for judging outcomes and to verify the progress. The Testosterone test is also important in the overall therapy to check for the effectiveness of the hormonal shot. I would recommend your dad to get it done together with the PSA. I would also recommend your dad to drink loads of water one hour before each radiation section, to avoid side effects.

Can you share with us the treatment protocol chosen by his oncologist?

What are the components of the hormonal therapy? Will it be continuously administered after the radiation?

How many Grays are to be administered total in the 9 weeks os rads?

Best wishes.

VGama

kkornegay
Posts: 5
Joined: Feb 2014

Dad had his first hormone shot March 21st.  He had a bone scan and ct scan to see if it had spread - which thankfully it had not.  He is suppose to have a series of 3 hormone shots. He had that one before starting treatment on April 23rd.  He gets another one mid treatment and the last after he is done.  The only thing I know about the treatment is it is radiation therapy for nine weeks.  I don't know about grays.  Thanks for the tip about drinking water prior to the radiation.... I will definitely pass that along.  

VascodaGama's picture
VascodaGama
Posts: 1519
Joined: Nov 2010

K

I had radiation therapy in 2006 in 37 sections during two months. The best along the treatment were the weekly discussions meeting with the radiologist where we exchanged the experiences while in treatment progress. I would receive tips for what to do to counter the side effects. I recommend you to assist your dad in these meetings making questions. Most of us surfer from the side effects, more than from the cancer itself.

Here are some links regarding the typical effects from where you can prepare a list of questions;

http://www.cancerresearchuk.org/cancer-help/type/prostate-cancer/treatment/radiotherapy/side-effects-of-prostate-cancer-radiotherapy

http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-treating-radiation-therapy

Best wishes.

VG

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