CSN Login
Members Online: 16

To treat or not to treat

leamon
Posts: 9
Joined: Jan 2012

Hello all,
I was diagnosed in July 2011 with stage 2 PCa, 3 of 12 being positive, Gleason score of 3+3 "involves app. 10% of the core". The same for all 3. One said "High grade prostatic intraepithelial neoplasia (Pin 2-3)" whatever that means. PSA in May was 7. A later one in Nov. was 4.6. I've read that statins may lower PSA by maybe 10%. Mine was about 1/3 lower. In addition I usually will not get up at night until after 5 or 6 hours, sometimes longer. This is an improvement over the past. I am inclined to wait for another PSA report.
In August I had bypass surgery. I am now nearly thru re-hab and need to get serious about deciding to treat or not to treat. I am in good health for a 79 yr. old. The cardiologist suggests treatment as he says I have a strong heart that should last another 15-20 years. Of course there are no guarantees altho several of my ancestors and their descendants lived well into their 90s. I wonder if the odds are good enough to take chances on the side effects of treatment. If cancer treatment would go as well as the bypass, I would not hesitate. Cyberknife, Proton or HIFU sound promising but I don't know of any in the central Indiana area. Out of the area, especially Texas or Tenn. as I have ties there, might be a possibility if one is the best option. I have talked to a Dr. that does the HDR brachytherapy and one that does EBRT. My Urologist said I would probably have 7-10 years if I did nothing. As you can tell I am on the fence and don't know which way to fall. Any suggestions and advice will be welcome.
Thanks in advance,
leamon

Swingshiftworker
Posts: 706
Joined: Mar 2010

At the outset, I'd say that, as long as you aren't talking about surgery (which I don't think you should do) and the form of treatment you are considering DOES NOT create a substantial risk of reducing your quality of life AND the cost of treatment is covered by insurance, you have nothing to lose by getting treatment.

A critical consideration is what your life expectancy is. Your urologist says that you should last w/o treatment (ie., active surveillance) until you're 86-89. On the other hand, if your cardiologist is right, your heart will last until you're 94-99. If your family history indicates that you can live to 99, then you can increase your life expectancy by 8-10 years by getting treatment for PCa now and, if that's a case, the decision to get treatment now would be a no-brainer.

IMHO, Cyberknife, PBT and HDR BT offer you the best prospects for recovery without significant side effects and I would focus on them in your assessment of the choices available to you. Of the 3, CyberKnife is the easiest one to receive; no hospitalization or body cavity penetration is required (as w/HDR BT) and it only requires 4-5 treatments over a week & 1/2 as opposed to at least a month w/PBT. So, you could receive CK and also go on a mini-vacation at the same time by traveling to NYC, Florida, SF or SoCal (or anywhere else where there's a CK treatment center in a location that you'd like to visit).

Best of luck with whatever choice you make.

VascodaGama's picture
VascodaGama
Posts: 1740
Joined: Nov 2010

Leamon

Welcome to the board. Unfortunately the biopsy is positive and you need to get into a decision, but the Gleason score 6 (3+3) is the lowest in aggressivity. The volume is also small (3x10% out of 12) and some cancers are slow growing (indolent type) probably never developing to become life threatening.
I wonder if you have done other tests, such as a DRE or MRI, or if you got any symptoms that your doctor has related to cancer.
Reading your comments in regards to your health other than the bypass surgery, it is difficult to understand the reason why your Urologist has given you 7-10 years if you do nothing.
I am doubtful of his assertions if you have no other “marker” positive to an aggressive type of prostate cancer.

The PSA at 4.6 is not that high for a 79 yr old and you indicate that it has come down from a higher level of 7 in a six month period (May to Nov). Those sharp increases or decreases are patterns of BPH. If present the 4.6 level may even not be totally related to cancer.

Only tests can really give you proper diagnoses and that would lead you to a better decision on your next step.

A must do thing recommended by many is to get a second opinion of the biopsy cores from a reliable laboratory (JH or Bostwick) and repeat the PSA. One should also pursue additional tests like; PAP, Testosterone, Bone densitometry, and UTI & Urine culture. These tests will give you a better “picture” of your case and will serve you in future considerations.
In any case, you should always get second opinions from other specialists before making any decision.
You should also be aware of the risks and side effects that each treatment entails.

Hope for the Best.

VGama

hopeful and opt...
Posts: 1493
Joined: Apr 2009

...is a very valid treatment option, especially for one who is 79 years, has a low volume, low grade disease. 70 percent of patients with low volume, low grade disease have indolent cancer, meaning not likely to spread. Men can be on active surveillance indefinitely, not 7 to 10 years as your urologist stated.

All active treatment that are available are invasive, and have side effects.

I suggest that get other opinions as Vasco recommended, and go on with your life.

Many here subscribe to a glass of red wine, be grateful that you have a low volume disease that does not require treatment, and make a toast to life.

PS. please feel free to click my name so you can see what I have posted about active surveilance which I have been doing for 3 years.

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

Leamon,

What a great post. Your situation highlights a common situation for all men as they age and studies have shown that by the time males reach their eighth decade that 80% of them have some form of prostate cancer and most of the time it never poses a threat to there person's health.

I think a key statistic here is that your PSA in May was a 7 and it was 4.6 in November. The key point here is that the PSA was DECREASING. Most PSA readings that are less than 10 can be attributed to BPH not aggressive prostate cancer and a PSA of 4.6 for a man your age is nothing to worry about, in my lay opinion. The PSA of 7 could have been caused by any number of factors other than a growing prostate cancer and in any event, PSA by itself is a lousy indicator of prostate cancer.

Frankly, if I were in your shoes I wouldn't do anything at all unless the PSA begins to rise or you begin experiencing some other physical symptoms. As others have pointed out any treatment, even CyberKnife (which I had myself) poses the risk of some side effects. Since you don't really have any side effects at all, why mess around with the potential of side effects at all at your age? Get out and live and enjoy life as best you can with your good health.

As far as statins, there are some studies that show they slow or prevent the growth of prostate cancer but they can also mask PSA readings. The next time you go in for a PSA test avoid sex at least 48 hours in advance, make sure they do the blood draw before the DRE, and try to avoid any hard stools.

I would also suggest that you consult with an oncologist who specializes in treating prostate cancer to validate any decision you might make and to give you different perspectives.

Best of luck to you.

K

Old-timer's picture
Old-timer
Posts: 156
Joined: Apr 2011

Based on the information you provide, you should choose "watchful waiting." Your cancer is very low grade and not likely to become a problem. At our age (I'm 85), prostate cancer is normally very slow growing while we continue to age "IN A HURRY." Why risk incontenance and sexual dysfunction unnecesarily? Careful how you listen to urologists and oncologists who profit from the treatments they provide. Of course, I believe in doctors; they provide valuable services. They have kept me alive, and I appreciate that.

You have my vote and I wish the best for you.

Jerry

rch
Posts: 79
Joined: Nov 2011

Congratulations on your successful bypass surgery at age 79! As to your prostate cancer, I share the same opinion as your Urologist or the other members on this board. As to the Cardiologist's suggestion, you are perhaps misinterpreting his statement. He probably just cleared you for treatment from cardiac stand point. I strongly doubt he actually suggested that you seek treatment. The presence of coronary artery diease is a surrogate marker of global vascular disease. I'm sure they scanned your carotids before the CABG. I hope that checked out OK. At this point I would suggest a good cardiac diet that would not only help the vascular disease, but also slow down the progression of CaP. In the mean time I strongly urge you to get a second opinion from a Medical Oncologist to help you with your decision making.

leamon
Posts: 9
Joined: Jan 2012

Thanks for the replies. The mention of various tests suggest tests that I had not considered or did not know about. I am not contemplating surgery. A little elabaration on my PSA; it has risen slowly from 3.7 in '03, to 7.0 in May '11 and back to 4.6 in Nov. The Nov. test was after taking a statin 2 months or so. To answer some questions posed; The 2 oncologists that I consulted specilized in prostate treatment I think. One used EBRT and the other brachytherapy. I don't know if they treat other cancers. I have not had an MRI but had a yearly DRE. I didn't question the urologist statement of 7-10 yrs. I think one stage or marker was T2B. I've forgotten the name for this. I've been told the prostate has some enlargement but I don't think enough to be of concern. I think the second lab opinion is a good idea. Anyone have an opinion about OURlab in Nashville? They had more info on submitting the slides but the Dr. or lab would probably handle all of that. As for the suggestion by the cardioligist to have treatment because of 15-20 yrs., that was a couple of weeks ago not before surgery. He definitely suggested treatment. One of the surgeons said about a month after the surgery that I had strong heart. Is a Medical Oncologist being suggested as an alternative to a radation oncologist? I assumed a M.O. meant a surgeon or chemo. A carotids scan was not done. I had one 2 to 4 yrs. ago. As I remember it was about 45% restricted. Most of the posts have reinforced my thinking to delay treatment at least until the next PSA report. As far as symptoms; I get up once or twice and have a little leakage at night sometimes. If anything else I don't recognize it.
Thanks again for the info and suggestions. The best advice comes from people who have "been there, done that"
leamon

VascodaGama's picture
VascodaGama
Posts: 1740
Joined: Nov 2010

Leamon

You are welcome. The group in this forum are friendly and eager to help newcomers.
In regards to your PSA chronology, my take as a layman’s opinion is that your cancer proves to be an indolent type, growing very slow. The threshold for a risky aggressiveness used by my urologist back in 2000 was a PSADT (doubling time) of lower than 14-months. Recently this threshold has been addressed in several studies for guys naive of treatments and the mark is set in a frame between; lower than 16 to lower than 24 months, depending on the study.
Your info indicates a PSADT of 100-months in the; 3.7 at 2003 to 7.0 at 2011. This is greatly different from a threshold of an aggressive type of cancer. All of this depends on the reliability of the data and for any influence in PSA levels due to medication (taken for infections, etc.) or other facts known to alter the results.

The average PSA by age in guys with the prostate gland has been debated in several articles. The problem being that man has a high tendency of getting BPH as it ages. Therefore, a spot high PSA in older man would not signify the same in a younger man. You can see reference tables in these links;
http://www.upmccancercenters.com/cancer/prostate/psa.html
http://www.realage.com/mens-health/normal-psa-values

Nevertheless, you have been diagnosed with cancer through a biopsy and the PSA is just a representative marker in the “set”. The National Cancer Institute got a good explanation on what they consider important for accessing aggressiveness. You can read it here;
http://www.cancer.gov/cancertopics/factsheet/detection/PSA

Statins are known to influence the PSA levels but not to such large differences of (7.0 – 4.6)= 2.4 ng/ml (35%). This value could be better explained through a decrease in testosterone levels. T is food for cancer and a considerable decrease in six months could drive the PSA down to those percentages. Surely the decrease in cholesterol (due to statins) would play a role in the “manufacturing” of the testosterone because T is produced from cholesterol. Anecdotally one could say that; lower cholesterol = lower testosterone = lower PSA.
From another view point, the presence of BPH could be a cause in the drop if the medication you took along those 6 months included any for the combat of infection or inflammation.

http://www.sciencedaily.com/releases/2008/05/080515072654.htm

Regarding biopsy second opinions, Johns Hopkins Laboratories are reliable. You can send the samples by courier yourself or request your doctor to do such. The importance of a reliable pathologist report is that it will influence your diagnosis and decisions. A clinical stage of T2b in the presence of a Gleason score of 6 is different from the same stage with a Gs 7.
The pathologist report may also alter the clinical stage T2b assigned by your urologist. The stage indicates the presence of cancer in one lobe.
http://www.psa-rising.com/prostatecancer/staging.htm

In any case, your next PSA in three months would dictate which direction to take.
I would advise you to get additional tests done (testosterone levels included) and to prepare a list of questions to your doctor for the next meeting. You can get an idea on items from these links;
http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor
http://csn.cancer.org/node/224280

More tests may give you peace of mind.
Good luck in your journey.

VGama

tarhoosier
Posts: 193
Joined: Aug 2006

Ourlab is Jon Oppenheimer, a top prostate pathologist. His opinion is solid. Be certain that it is Dr. O himself who provides the path opinion. You could not do better.

bdhilton
Posts: 759
Joined: Jan 2010

At your age I would be looking at the best solution for quality of life....Best to you in your decision-B

FF813337
Posts: 2
Joined: Jan 2012

First I want to thank all which have put this site on and I also want to credit everyone for the information and their story regarding this type of cancer. I am very confused with this prostate cancer and when I was told I had it have been in a fog. I had the surgery robotically and was told it was a success however my psa has been starting at a 0.2 after the 3 month mark, and then a week later it was 0.4. Then 6 weeks later at an outside lab am told the psa is 0.2. I have noticed I have pain in my right hip and atribute that to sciatica. I am having an mri to see if there is anything in the area of where the prostate was and the oncologist is leaning towards readiation. I just don't know?? I am 53 and cant believe it.

VascodaGama's picture
VascodaGama
Posts: 1740
Joined: Nov 2010

FF

Sorry to read about the rise in PSA. Those rises after surgery usually are indicative of recurrence. In other words, it means that the surgery did not get the whole cancer out of your body, and that there are metastases.

The important is to confirm the recurrence status and its location. CT, MRI and bone scans are the traditional ways to look for them, but in cases with small tumours (<1.5 millimetre), those scans may be useless because they lack resolution to detect micrometastases.

I would advise you of sharing information of your PSA chronology, Gleason score and pathologists report, to get proper advices from survivors in this forum, who are well educated on the matter. You also should try reading posts about recurrence and research the net about salvage treatments and the side effects they entail.

It is typical to have radiation therapy as a salvage treatment for dealing with recurrence, however, if cancer has metastasized to bone, hormonal treatment may be a better choice to deal with systemic cancer. In such case the radiation would probably be kept for a later stage.

In any case, your diagnosis and present status should be firstly checked so that you can find a solution. Surely you should get second opinions from specialists (medical oncologist and radiologist) before deciding on anything.

Wishing you find your quest.
Welcome to the board.

VGama

leamon
Posts: 9
Joined: Jan 2012

Has anyone read the Johns Hopkins book "Choosing The Right Treatment For Prostate Cancer"? If so, is it worthwhile considering all the info available on the internet?
VGama, thanks for the links you suggested. There is a lot of good info there. The more info I get the more I'm inclined to take the 'watchful waiting' route at least until after the next PSA. I think I agree with several on this board-treatment probably doesn't offer enough benefit to offset the risk. What is the suggested routine? Is it just PSA at a set interval? Various additional tests have been suggested some of which I am not familar with. Can someone fill me in? I have asked for a 2nd opinion from JH. After that I will make an appointment with the urologist.
A question about Cyberknife; about how many treatments and how often?
Old-timer; your statement that we age "in a hurry"--"ain't it the truth"?
Thanks again,
leamon

hopeful and opt...
Posts: 1493
Joined: Apr 2009

"active surveillance with delayed treatment", you are closely monitored and active treatment is done only if necessary..."watchful waitng" is a passive term and wazs used fairly often for older men who were mainly watched and not actiely treated.

The protocol of "AS" differs by institution, that consists of DRE's, PSA's , other markers and an occassional biopsies. You are watched very closely, and if there is a change in your condition that requires active treatment, you are then treaedt. Studies have shown that there is virtually no difference in treatment choice of those whose disease is progresing after being on "AS" than the choice available when first diagnosed.

Cyberknife since your tissue is radiated is invasive, can have side effects, although those who post at this board have not had for the most part.

Cyberknife consists of approximately 5 high dose, very precise radiation treatments.The procedure is excellent for those whose cancer is contained in the prostate. This is done over a one or two weeks. Although some centers treat every day for a week, a study had been done that shows a days rest between treatments is prefored. But you don't need cyberknife or any other active treatment, you are a perfect candidate for Active Surveillance.

leamon
Posts: 9
Joined: Jan 2012

 

 

Hello All,

I have not posted in about 3 years or so. Have just been getting regular PSAs and DREs. I got a 2nd opinion from Johns Hopkins. Their report follows.

2nd opinion from Johns Hopkins 2/2/2012

C Small focus of prostatic adenocarcinoma, Gleason score 3+3=6, involving less than 5% one (1) core.

J Adenocarcinoma of the Prostate, Gleason grade 3+3=6, involving 10% of (1) core. Perineural invasion identified in this case.

K High-grade prostatic intraepithelial neoplasia.

L Small focus of prostatic adenocarcinoma, Gleason score 3+3=6, involving less than 5% one (1) core.

The other 8 were benign.

Following is my PSA history;

4/2004 3.2    5/2005 3.0    6/2007 4.4    8/2008 5.9    4/2009 6.8    5/2011 7.0    11/2011 4.6    2/2012 6.16   free 1.24 % free 20.13    5/2012 7.2    8/2012 6.93    11/2012 6.53    3/2013 6.23    8/2013 7.18    9/2014 9.6    2/2015 9.99

In Feb. 2015, Uroligist did not favor a biopsy because of the risks. We agreed to get another PSA in May. If there is a big jump he will probably suggest radiation. Otherwise maybe hormonal shots.

I would like to hear comments from anyone, especially experience with hormone shots. By the way, I am now 82 and counting. I still get up once or twice in 8 to 9 hrs., health has not changed much except stamina and 'workabality' have decreased.

Thanks,

leamon

 

 

 

 

hopeful and opt...
Posts: 1493
Joined: Apr 2009

Leamon,

I wonder if your prostate has increased in size.Pressure from  large prostates on the uretha proportionaltely secretes more PSA in the blood.

 

Glad that things have gone well for you in the past three years.

 

Best,

leamon
Posts: 9
Joined: Jan 2012

Hello Hopeful,

Thanks for the reply.  I hope you as well as overyone else are doing well.  You may be right about the prostate but I don't see any real change in urination.  But that does rule it out.

leamon

 

hopeful and opt...
Posts: 1493
Joined: Apr 2009

Now that I think about it, I remember that Johns Hopkins permits those with PSA up to 15 to enter their Active Surveillance program. 

 

Some of the posters who posted to this thread are still here, and for the most part are doing well, as far as I know, while a couple have moved on.

Best,

H

 

leamon
Posts: 9
Joined: Jan 2012

Hopeful, that sounds like a great idea but don't you have to live close?  I live in Indiana.

Thanks,

leamon

hopeful and opt...
Posts: 1493
Joined: Apr 2009

Leamon,

I'm not saying that you need to be treated at Johns Hopkins; only sharing that the requirements to be in an Active Surveillance program are relaxed after 70....ie PSA of 15 versus 10 ....Gleason 3+4=7 versus 3+3=6.  At 82 your Gleason is 10 which is 5 less than 15.
 
Basically it takes a long time for the cancer to progress....years......so it is very possible that you will die with, not because of prostate cancer.
 
There is a risk/ reward for treatment....Active treatments are not walks in the park, and can have side effects.
 
I mentioned to you that your PSA is a little higher now, which may be due to a larger prostate.....(your prostate size was measured when you had your biopsy three years ago....before I would consider any treatment, I would have an image test that will measure the current size of your prostate, and compare to the results of three years ago).
 
Leamon, I am friendly with a man who is 85 He regularly goes to the same gym that I go to.....he never had a biopsy, however his PSA has been rising over the years. It is now 42. His son is a urologist at a prestigious medical center. His son tells him to go on with his life.
 
 

 

VascodaGama's picture
VascodaGama
Posts: 1740
Joined: Nov 2010

Leamon

I am very pleased to read the news. Unfortunately the PSA continues to rise but fortunately it continues moving up in a very slow pace, as in the past. Surely it may be due to the type of cancer (Gs6) diagnosed in 2011. The numbers are causing you anxiety and you want to create an idea on what to think and how to proceed.

PCa treatments for 83 years old are not easy to define and the choices depend much on other issues that one may have at present or may expect to occur in the future. We age and many health situations will show up (even if we do nothing to cause them) requiring medication or treatments that may interact with the medications/treatments for PCa. All choices therefore interweave and must be judged to attain balance. At JH they have suggested such by recommending a palliative form of control with hormonal manipulations and a late attack with radiation (on spots) if they become nasty.
Surely if you are fit and confident on RT (radiation) as a means of cure then you should chose a type that fits better your situation. In any case you should try firstly to locate the tumours to decide on the proper RT protocol and field of attack. Radiation cannot be done twice at the same area.

At this stage of your journey, even if you decide in no treatment, I would recommend you to have an exam that would look for cancer in tissue and bone. These can be done with a C11 PET/CT or F18 FCH PET/CT exam. The results would provide you peace of mind in your continuing Watchful Waiting.

Hormonal treatments are in fact very good in means of controlling (not cure), achieving such during long periods of life, but they also cause side effects that could be mild or harmful but uneasy. The worse seems to be the effects of menopause due to hypogonadism. Fatigue and hot flashes are common in some guys. Irritability and a constant sense of discomfort (indisposition) may become a temporary symptom that many see it difficult to sustain. Hormonal therapy (HT) in long periods exceeding 24 months has the risk for heart failure.
The good of the therapy is that one can stop it at any moment and the body returns to normalcy status (in about 4 months) losing its effects and taking away with it the “baddy” symptoms. HT can also be done mono or with a combination of drugs. You could choose taking a solo daily pill of an antiandrogen (like Bicalotamide) or a solo LHRH agonist shot (like Lupron) or take both in combination. Google the names to get details on their side effects.

I am following HT intermediately, since 2010. It has been successful in controlling cancer advancement but I have experienced numerous symptoms, however, mild. My aim is only control so that I take the medication for a period to lower cancer activity (lower PSA) and then I continue the treatment with a period of no medication allowing the PSA to increase freely. The timing of the “switches” (On/Off) is the PSA. When it reaches the level of 2.5 ng/ml I restart again another cycle On medication. I am now on the Off period since 2012 and the PSA has increased from 0.05 (while on drugs till May 2012) to 1.24 (December 2014). It is still far from the 2.5 threshold but I already managed control on the cancer for 53 months in this modality of HT. I am also a Gs6 guy.

The best we can do is to conduct a healthy way of living, being careful with diets and being active physically (fitness). Positive thinking and engaged in something we like (our best hobby), travelling and meeting friends to avoid stressful situations.

I hope you understand my opinion. Please note that I am not a doctor so that you should follow your instincts.

 

Best wishes.

VGama

 

leamon
Posts: 9
Joined: Jan 2012

Hopeful, I haven't found any AS around here.  The story about the 85 year old seems to re-inforce the do nothing approach for us 'over the hill guys'.  So far thats pretty much what I've done--stay active and eat what I want as always.

VGama, thanks for the info on HT.  Unless there is a big jump in PSA, I'm inclined to sit on it--no pun intended.  I think an exam to see the involvement would be a good idea.  Did the HT take your PSA that low or did you have some treatment?

Thanks again,

leamon

hopeful and opt...
Posts: 1493
Joined: Apr 2009

Leamon,

Don't just do nothing: you want a doctor who is qualified to handle your case....for example, I think that it is a good idea to have a T3 MRI to give an idea if the cancer is one lobe or two, how many suspicious lesions, potential extracapsular extension, etc. You want to proactive. So you want to have a doctor, probably a urologist to  manage your case with  Active Surveillance .

If you do not have confidence that your doctor can do this, try to attend a local support group in your area USTOO.org has many local chapters that you can access by going to their site.  

Even if you have to make a trip for treatment it is worthwhile.....

Diet , my viewpoint is different than yours; I have made changes to my diet.....Heart Healthy is Prostate Healthy

VascodaGama's picture
VascodaGama
Posts: 1740
Joined: Nov 2010

Leamon

My “story” is 14 years old. My initial PSA at diagnosis in 2000 was 22.4. After prostatectomy it went down to 0.12 but soon climb and at 3.8 I did radiation therapy. That took it down to 0.05, climbing again until it reached the threshold of PSA=1.0 that was the start of the hormonal treatment. A single Eligard shot drove the PSA down to 0.02 in one month and such keep there for two years.

You can read details of my case in the links in this thread;

http://csn.cancer.org/node/290854

Best

VG

 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2015 © Cancer Survivors Network