CSN Login
Members Online: 8

Radical Prostatectomy Oct 2009 PSA rising & spread

Concerned1234
Posts: 4
Joined: May 2011

Mr friend had a radical prostatectomy in Oct 2009 and it had spread to the muscle. PSA was low at first but the last 2 PSA tests have risen both from the previous year and came in at .11 and now doctor is suggesting radiation of 39 treatments. He will not begin them until he has another PSA test in Aug. as he does not trust the doctor's guidance.
He has good bladder control and absolutely no sex drive and has unfortunately continued drinking a bottle of wine daily. Can anyone shed any light for the survival rate?
Are there things to watch for as his caregiver I am trying to find a way to help him and for my own coping through this.

Gneiss
Posts: 2
Joined: Apr 2010

I am slso a caregiver. It's not easy. My husband wasn't a surgical candidate. 57 when diagnosed. Gleason 9 T4N1. Very aggressive cancer. His only options were hormone therapy and radiation. Regarding therapy, do your homework. My husband was lucky enough to get on a new state of the art machine accurate to millimeters. It was made by Varian. I had done some research and found some radiation places use photons instead on protons. There aren't many of them around the country. Our Dr wanted regular radiation. Radiation is tough for both of you. The person getting it seems fine for a while. After a few weeks the fatigue sets in. That keeps getting worse. By the end of the last week he was so weak he had trouble getting there and back. He slept all the time. This is fatigue, not sleepy tired. Sleep didn't refresh or restore him. Time did. The fatigue ball doesn't stop rolling when the treatments stop. He kept getting worse. Then slowly started improving. You need to read about radiation. The kind of machine they will be using. What will they be zapping? How many grey he will be getting? While it is horrible, depending on where it is, it may help. You didn't mention if he was getting hormone therapy. I had read about the benefits of salvage radiation. I don't know if that applies in your friend's case.

As for survival rate, my internist told me no one has an expiration rate stamped on their forehead.

As the caregiver I read everything. I can't read a book for pleasure but can read clinical trials all night long. I went the homeopathic support route. What can I give him to support his immune system and hopefully slow his disease? I have no idea if any of the things I give him will help. But, it can't hurt and I don't want to spend whatever time I have left wondering what if I had done this or given him that. Assuming he dies first. Remember, no guarantees in life.

As a side note, if he doesn't feel comfortable with the current doctor, there are others. I found the first one by accident. I walked into this huge urology practice and looked at a rack of more business cards and had no idea how to select one. I have great respect for secretaries and nurses. I told the ladies my husband's situation and asked who they would select for their husband? I went with that guy they recommended. They were right.

We also live in another state so he needs another doctor. The third doctor was the right one.

A very brilliant man once told me to never forget, to you it's personal, to them it's business. I will never go to a doctor who treats his patients as customers and not as people.

As for the wine, red is better than white. It comes to quality of life. If this helps your friend, that's his choice. Whenever we try something new, we look at each other and say, "what's the worst that can happen?".

I'm not sure if any of this helps. This, as all cancers, is horrible. Life changes with that diagnosis. Make the best of the time you have. :)

VascodaGama's picture
VascodaGama
Posts: 1518
Joined: Nov 2010

Concerned-Friend

More info (Gleason score, pathological stage and age, etc.) regarding the diagnosis of your friend is needed to consider a survival rate. In this site you can compare your friend’s clinical diagnosis with their chart to obtain a rate (percentage) in an assumption for 15-year prostate cancer-specific survival, after radical prostatectomy;

http://prostatecancerinfolink.net/2011/01/21/projection-of-15-year-prostate-cancer-specific-survival-after-radical-prostatectomy/

In this site you find a set of Kattan nomograms with predictions for 5 to 7 years in survival free biochemical rates. You just enter the data as indicated;
http://prostatecancerinfolink.net/tips-tools/kattan-nomograms/

Nevertheless, these charts are assumptions and may express a longer or shorter term to each case. You should also consider that the general health of your friend is crucial in determining a survival. Prostate cancer is a slow growing “affair” that assures many years of living to their “patients” without any management and we can double that period if we control its advances.

His Doctor’s suggestion of a Salvage Radio Therapy (SRT) (39 treatments IMRT) due to recurrence may be adequate, however, PSA=0.2 is a threshold recommended by NCCN guidelines, indicating recurrence. In many studies you can read that SRT has higher possibility of success for cases where the PSA is not bigger than 0.4.
I wonder your meaning that the cancer has metastasized to the “muscle”. If in fact your friend has been found with metastases, he should consider hormonal treatment to handle his systemic disease. Probably SRT with added hormonal treatment may be more effective in his case.

I would recommend you to consult an oncologist who may be more acceptable to your friend. We all like to deal about our PCa problem with someone we trust. Confidence has lot to do with the success after the treatment.

Surely he will not die of prostate cancer due to the intake of a daily bottle of wine. He may die due to other causes. You could recommend him an improved diet balanced with vegetables, meat, fish and fruits to accompany the red wine.

Wishing you both the best.
Welcome to this board.

VGama

Concerned1234
Posts: 4
Joined: May 2011

Thank you for the information he is very stubborn and will not seek any additional information or a second opninion he is just flying blindly into this treatment. The doctor wanted him to start immediately and he has decided that he will wait until August for the 3rd PSA result to check if the level has gone down or stayed the same. He feels that since the cancer is a slow growing type he does not have to act immediately.

Concerned1234
Posts: 4
Joined: May 2011

Thank you very much for your invaluable information regarding the types of radiation and the tired and weakened condition. My friend does not relay enough information for me to really gather material. I am relieved to read about the side effects and what to look for I have asked him if he has any further information about the radiation treatments but he "barks" at me. It is frustrating trying to help him. Was their nausea when your husband was on the radiation treatments? How long after the radiation did he become "sleepy" and begin to feel better? The doctor did not put him on any hormone therapy so far i have been wondering why he has not put him on this regiment.

Gneiss
Posts: 2
Joined: Apr 2010

My husband never had any nausea. He didnt get skin issues, which I have read can be a problem. He had some bowel and bladder problems. That was temporary. He had 44 days or almost 9 weeks. He was still swimming until about week 5. That's when he started to really feel tired. It kept getting worse after that. He slept all the time. He continued downhill for a few weeks. Hit bottom and slowly regained his strength. It's hard to tell if he still has residual effects from radiation, which ended a year ago this past April, or is his current lack of energy from the hormone therapy. He ate pretty well through this entire process. I feel for you as the caregiver. There are times I feel so helpless. I'm a control freak in a situation where I have none. The cancer may be in control but we are going to give it a run for it's money. My husband's attitude is very positive. He hasn't lost his sense of humor. He said he could sit and cry but what would change. So, we deal with the medical issues, take all kinds of supplements and are doing an accelerated bucket list. You can only do what your friend allows. That in and of itself is frustrating. I hope he decides on the radiation. My husband wasn't a surgical candidate as it had spread to other organs. I had already read about salvage radiation before we knew that. There are quite acfew studies on the benefits of salvage radiation. Did the doctor suggest hormone therapy prior to radiation? I know that was standard for people like my husband. His tumor was huge and the hormone therapy before made it smaller. Just a question he might want to ask his doctor. I hope it helps for your friend. Good luck.

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

Concerned,

Radiation treatment to address rising PSA following a radical prostatectomy is common although it would be useful if you could indicate what his initial diagnosis was and what the post surgical pathology report revealed.

As Vasco pointed out, most oncologists consider that 0.2 ng/ml is an indication of biochemical failure (BCR), but if the PSA is risking steadily toward that mark the doctor may want to start treatment before as studies have shown the earlier the patient is treated the better the success rates. Of course a lot depends upon the age and other health issues of the patient.

The one sentence in your post that really raised my eyebrows was that he apparently does not trust his doctor. For heavens sake, life is too short to go through it without trusting your medical team. If he doesn't trust his doctor treating him for this life threatening disease, by all means find another doctor as fast as you can.

Good luck.

Concerned1234
Posts: 4
Joined: May 2011

The initial diagnosis was a Gleason score of 8 -Stage IV I believe. He makes me wonder why he own't start the radiation from now or find out about the radiation treatment until the next PSA test in August I am not sure if it is wise for him to wait but he will not listen about the treatments or sit and discuss this with me and I am at a loss. He is almost 60 and in otherwise good health. I would like him to get a 2nd opinion but he refuses he thinks that the dr who he has been seeing is fine for this because it is all standard.

How frustrating it is and he won't listen to reason and I am fearful for him.

VascodaGama's picture
VascodaGama
Posts: 1518
Joined: Nov 2010

Concerned-Friend

I have run survival rate nomograms with the data you gave (Gleason score 8, stage IV, PSA=10 before surgery, PSA=0.11 at 18 months after surgery, PSADT assumed at 13 months, metastasis at lymph nodes, 58 years old at surgery, no other symptoms) and some assumed by myself.
The results came as follows;
Progression free after surgery at the ten year mark was 20% but at the 5 year mark it gave a good chance of 60%. At the two years mark he would have 90% chances to see a “jump” in the PSA if he delays SRT.
This means that he can wait until August (his next PSA test) without causing must difference in the outcome from an earlier SRT.
In both Survival Rate tests, for SRT done now at a PSA=0.11 or done in August (in three months) with a PSADT = 13 months, the SRT success rate was identical of 6 years progression free with survival at 15 years mark on a low of 26%. With added hormonal treatment this value went up to 50%.
All of this indicates that his reasoning of waiting till August to decide on SRT is advisable. It also means that he should consider SRT with adjuvant hormonal therapy to control the cancer progress.

Your friend may be refusing any talk about SRT because he is worried with radiation and does not know about its safety issues or does not know about the modern ways and equipment delivering the treatment. I would suggest you to research on SRT modalities, adjuvant hormonal drugs and to get acquainted with their side effects, while waiting for his next PSA and probable decision. He will like to hear about your findings when that time arises.
Here are same sites;
http://knol.google.com/k/salvage-radiation-for-prostate-cancer#
http://advancedprostatecancer.net/?p=1094
http://jama.ama-assn.org/content/291/11/1325.full

It is frustrating to have a friend that doesn’t want to discuss about his cancer problem. Your friend may disregard any conversation on the matter but with no bad intention. Many survivors do not like to see family members or close friends worried on the matter, however, we like to sense that they care. It gives us comfort and a feel that we are not alone.
You may find a cancer support group close to your place and you may inquire about ways in handling his “refusal” to spiritual support. You will find that those groups are also helpful to you as an indirect sufferer of the prostate cancer.

I hope this post brings you peace of mind.

Wishing you both the best.
VGama

mrspjd
Posts: 688
Joined: Apr 2010

Concerned caregiver,

You’ve rec’d some great advice re PCa. However, you mentioned Mr. Friend’s propensity toward wine/alcohol. Forgive me as I don’t mean to overstep bounds or read more into something that’s not there but, you indicated a concern both for him and yourself in “coping.” Wondering if this inclination to the bottle of wine was simply a matter of enjoying wine with meals/dinner regularly or something more that you might be worried about, such as alcohol abuse? If the former, please ignore the rest of this post.

Depression (anger/fear) can be a silent side effect of a cancer dx or recurrence. It can show itself in many ways, one of which might be alcoholism. I’m not making any assumptions here; only you know what you both are dealing with. But, if you believe alcohol abuse may be a function of depression (PCa or not), perhaps a frank discussion with Mr. Friend might be in order. If that is not possible, maybe he has a close friend or trusted family member that might assist in speaking w/him and encouraging him to obtain help. Next step would be seeking guidance from medical professionals such his PCa oncologist, his internist or better yet, a referral to a mental health professional. While many men may feel shame in seeking help or admitting to such issues, they need to know they are not alone and that there is no shame in receiving tx for depression and/or alcohol abuse.

If alcohol abuse is identified and he refuses to seek help/tx, you have options for coping. Contact your nearest Al-Anon group (Google “alanon”) for friends and family living with this issue.

Good luck to you both.

VascodaGama's picture
VascodaGama
Posts: 1518
Joined: Nov 2010

This is a great advice from Mrs PJD. Depression is common in delicate moments along our “course” and it may affect our biorhythm with direct influence in cancer activity. It should be avoided to the maximum.

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 2000-2014 © Cancer Survivors Network