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Posted 1/7/2013 12:49 PM (GMT 0)
Jul 28, 2008 4.26
Dec 3, 2008 5.9
Jan 2, 2009 7.29
Aug 10, 2009 2.8
Jun 1, 2010 3.1
Dec 5, 2010 6.00
Mar 24, 2011 6.08
May 1, 2011 6.93
Aug 6, 2011 1.2
Nov 9, 2011 0.98
Apr 23, 2012 1.19
Nov 22,2012 17
Dec 5, 2012 18.31

Prostate score from Jul 2008 to Dec 2012

Nothing is making sense anymore. I am convinced my doctors have no more an understanding about what is going on than I have. Nothing is working and the quality of life is disappearing fast. What to do, where to go. Unsure. Know I don't want to live like this.

So far this disease had destroyed me physically, sexually and financially. Depressed would be mild, desperate, most definitely. Having quality of life vs quantity of life issues and wonder when does it stop. When do I stop.
Posted 1/7/2013 1:34 PM (GMT 0)
Have you had some sort of treatment along the way?
Posted 1/7/2013 2:21 PM (GMT 0)
Have you even had any prostate biopsies along the way? Or have you had any treatments? You aren't telling us the whole story it seems. If your PSA has been climbing that hight without at least one or more biopsies, something is very wrong with whom is treating you.

david in sc
Posted 1/7/2013 3:34 PM (GMT 0)
In early February of 2009 I had a biopsy and cancer was found T2 Gleason 7. In April and May I went through 25 sessions of Tomo Radiation (external) and then two internal high intensity radiation treatments with 17 nylon straws inserted into the prostate through the pelvic window. Each internal treatment was 1 week apart and the tubes were removed and reinserted for the second treatment.

Late May 2011 a second biopsy was done and no cancer was found.

Current treatment is heavy doses of antibiotics for 28 days and then another PSA test. This was after the doctor consulted with another doctor in his office and was seemingly unsure of what to do.

Post Edited (hlc1948) : 1/7/2013 8:40:00 AM (GMT-7)

Posted 1/7/2013 4:27 PM (GMT 0)
You have been battling this beast for almost five years, and it has hit you over the head physically, sexually an financially. I can only guess at the hell this disease is putting you through; however, I am sure there are others on HW who are going through exactly what you are experiencing, and they will likely share with you how they cope.

Is it possible that you may want to consider talking to a mental health care professional on how to deal with this very stressful situation?
Posted 1/7/2013 5:02 PM (GMT 0)
Cancer Care won't/can't allow me to have Councilling because they only allow five sessions and I have used those. My local mental health therapist has done all she can do. The psychiatrist just put me on drugs which if taken at full dose make me a vegetable. The lower dose works most of the time. Since the cancer treatments have financially wiped me out I am struggling to survive let alone pay for a real therapist. I don't have medicare for another 7 months. I frequently have considerable pain that the medicals find hard to believe. Believe it or not, it hurts to urinate at times.

I am sexually nonexistent. Financially struggling , and everything seems up in the air and having doctors that think waiting months to do anything is reasonable Is unacceptable after all this time. I want one year of being healthy. The quality of my life has diminished to the point that I have a time dealing with it, and what good is quantity of life without quality of life....worthless.

Post Edited (hlc1948) : 1/7/2013 10:46:25 AM (GMT-7)

Posted 1/7/2013 7:19 PM (GMT 0)
Glad to hear that the lower dose meds work most of the time, and that in seven months you'll be on Medicare. Any chance that you might qualify for Medicaid and be able to get some additional assistance before Medicare?

I would guess that the doctors put you on antibiotics to make sure that an infection was not causing a rise in your PSA (and urination pain). If the antibiotics do not work, have the doctors talked to you about possible future treatments, such as hormone therapy?
Posted 1/7/2013 7:22 PM (GMT 0)
Not yet, they are being very closed mouth about all of this. More than anything, I think I am tired. Haven't wanted to get out of bed all day, have things that need doing, just don't care.

No MEDICAid, don't qualify. I am in a doughnut hole of not having enough for medical care but to much to get assistance.

Post Edited (hlc1948) : 1/7/2013 12:27:30 PM (GMT-7)

Posted 1/7/2013 7:29 PM (GMT 0)
You have been through a lot of stress and that is very wearing on the body as well as the mind. Sometimes I have to listen to my body and if I am tired take an off day(s) ... this weekend I did not do much besides watch four football games and doze.

Get your rest, your body is talking to you.

Best wishes.
Posted 1/7/2013 7:43 PM (GMT 0)
hlc1948:

Sounds like you are depressed, and for good reason. And it sounds like the Docs. are frustrated, too.

This may seem like a strange suggestion, but maybe you need a spiritual solution - worth a try. Do you have a minister or priest or Rabbi you can talk to and pray with ? And a support group may help, too. It sounds like you have tried about everything else.

Good Luck - please don't give up hope. Things can only get better.
Posted 1/8/2013 1:10 AM (GMT 0)
Hic, it really hurts to read your posts and not be able to help in some way.
There must be some sort of resource you can access to get some free or low cost psychological counseling. I looked at your profile to see if you listed what area you are in so i could google it, but no info.
Also, would it make any sense to seek out another uro oncologist for another opinion. It sort of sounds from your posts like the docs are confused, and not sure about the right direction. Maybe find someone who can give a fresh perspective.

We are here for you, keep us posted on your progress. And no doubt its easy to say, not being in your shoes, but i'll say it anyway. Don't give up, don't let this beat you. Seek some other help. Medically and psychologically. With all the entitlements available in our society, surely there is some way for you to get the help you need, at least with your anxiety.
Posted 1/8/2013 1:14 AM (GMT 0)
Yes, people on here really care. I get it right now. Try to find some hope in it all - we need to.
Posted 1/8/2013 1:49 AM (GMT 0)
you're depressed but the great news is you are reaching out.  i think Javguzzi's advice is sound.  you need to get help both from a professional and from a support group.  many of us use the forum for support!  good luck to you and keep putting one foot in front of the other!

ed

 

Posted 1/8/2013 2:29 AM (GMT 0)
Talked to a high end medical school in New York that has a record of dealing/teaching about prostate cancer and they were impressed with my record keeping, but also with what my doctors are doing. Told me to call my oncologist, which I did and the thought there is that I need to hang in there a bit longer, that my urologist is one of the better in the area. The oncologist was also very compassionate about my frustration, anxiety and overall discomfort.

Also got an email for a cancer group in New York for phone counseling, I need to call them tomorrow. Hoping it is good news.

Found a different mens group here and will give it a try. Resources are difficult to find, even with the internet. The mens group is at one of the local hospitals.
Posted 1/8/2013 2:40 AM (GMT 0)
Good job reaching out!!
Posted 1/8/2013 2:31 PM (GMT 0)
hlc1948:

Sounds like you are making progress - keep at it. Please make the phone call. I hope you can find a good support group, too. You need to find a way to transcend your situation.
Please keep us posted. God Bless.
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