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Advice please. Struggling very hard with diagnosis and planning next steps

T Paul
Posts: 12
Joined: Nov 2012

I was diagnosed late October and am in the final stages of consultations before a treament choice is made ( will probably be HDR BT ) and treament begins. I have consulted with CTCA, RCOG, Emory Winship and will be visiting MDACC on the 14th.

Based on these consultations I think the cure outlook is good buy honestly the process of consultations, insurance, varying opinions fron Dr's and last and most importantly the waiting... and "unknowns" has worn me very thin. I began having panic attacks, can't sleep and have a hard time focusing. I am puzzled at the way I feel. I was the toughest SOB around until this hit. I am truly hoping that most of this anxiety will pass after my visit with MDACC and treatment begins as there will be a clear path.  

So question to all is are these feelings common? Is group discussion a good remedy? What else can I do? Is it safe to assume much of this will subside after treament begins and the waiting is over?

Thanks in adavnce for the input.

T

 

 

 

 

 

 

 

 

 

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

Sorry for your condition and it will be a Great year. MDACC is the best choice, and will be in good hands. Me being a stage four prostate cancer, heart condition, neuropathy in legs/hands and diabetes. MDACC has kept me in the fight with the PC since 2010. They are using the latest trial's against this monster and helping me with my neuropathy. The CT scan are fast, and all test are fast with about 1 1/2 day stay. Plus you usually get the test result then and not a week later. I go every 3 months and see the same Doctor's.

 

Happy New Years

God Bless

JkArl
Posts: 1
Joined: Jan 2013

I am a prostate cancer survivor, who was first diagnosed in September, 2012. I too had a period of time when I felt completely overwhelmed with all of the inputs and suggestions for treatment that I was receiving. I had read Dr. McHugh's book, Prostate Diaries during my discovery period, which I highly recommend. I hung a good strong set of Gleason 9's after my initial biopsy report, so I had a high concentration of very agressive cancer. I visited 2 different urologists during this time before I settled on one. He then recommended me to a Urologist/Oncologist in my area (at USMD in Arlington, Texas). I felt this was a good option, since he could talk about and perform surgical and non-surgical options. He was a very good fit for me, who listened to what my concerns (and my wifes concerns) were about all of my options, and all of the potential outcomes of each option. After a very lengthy (over 2 hour) consultation, I arrived at my decision. My wife and I felt good leaving the office. I chose a radical prostatectomy.

The next morning, my mind was going 100 MPH in all directions with all of the what ifs and how about that questions. I sent a short list of my concerns to my surgeon, who scheduled a second consultation with me. We talked again about all of my concerns, and I left that consultation feeling at peace about my decision.

No two cases or people are the same. I was blessed that I found a very skilled surgeon who was willing to spend the time with me and my wife during our decision making process. He continues to be this way to this day.

This is what worked for me. You will have to arrive at the point where you are comfortable (or in my case "at peace") with your decision. I prayed a lot during this period (and still do).  I hope you can find this too.

jack kean

VascodaGama's picture
VascodaGama
Posts: 1598
Joined: Nov 2010

Hi Paul

 

Anxiety is friendly of our enemy, the PCa. You need to relax. How about taking time and going for a trip to that special place?

I think that we all at sometime freak-out when making a decision on a treatment. I believe that such feelings are common among us because we are dealing with the unknown. We are powerless and do not feel comfortable by taking the driver’s seat in the command of our case.

What I bless for turning me into a more confident status at my time (in 2000) it was the time that I and my wife spent reading and investigating. As more knowledge I got as more confident I felt.

Your feelings could be a cause for not being yet prepared. You may need that extra time before engaging in the treatment.

 

Your shared diagnosis in another thread (http://csn.cancer.org/node/249325#comment-1301398) is evident to the fact that you got that extra time before embarking on the decision. Gleason 6 in two specimens and 7 in one out of 14 with a PSA reading of 1.60 ng/ml , Stage = T1C, this is a diagnosis of a low aggressive case.

No one is forcing you to accept anything and you should be totally confident that you are going to get what you believe and trust. Once decided, there is no return or remorse latter, and what we choose is the best we got. We all have chosen the best to our cases.

 

High dose rate brachytherapy (HDR BT) is a good way to treat similar cases to that of yours. Bracky is the treatment that set the standards for the radiation doses (Grays) used in modern protocols of radiation treatments such as IMRT, CK, etc. The results from years of experience were used for comparing performance and outcomes, and all other modalities got approvals or acceptance due to the successes of HDR.

 

In fact, those treatments are more distinguished by their unique side effects particulars of each one. Bracky is more associated to urethral strictures. These may be the points to consider when deciding on the protocol distribution of Gys.

If you think that it would help you “clearing” any still existing doubt in your choices, I may suggest you to ponder on the information at your hands and try discussing the details with patients treated by your doctor with the same type of therapy.

Just try getting back the confidence that took you to the present moment.

 

Here are some materials that may help you;

 

A site where you can read stories of patients with similar status of that of yours that has chosen Bracky:

http://www.yananow.org/query_stories.php

 

Experiences on treatment results;

http://www.prostatecancertreatmentcenter.com/ProstateCancer/ProstateCancerResultsStudyGroup.aspx

 

Details on HDR;

http://www.melbourneprostate.org/wp-content/uploads/2011/06/Curing-Prostate-Cancer-with-HDR-BrachytherapyV3.pdf

http://urology.ucla.edu/body.cfm?id=447

http://prostate-cancer.org/high-dose-rate-hdr-brachytherapy-very-well-suited-for-prostate-cancer/

 

Books;

Brachytherapy: Applications and Techniques, by Phillip M. Devlin

High Dose Rate Brachytherapy: A Textbook, by Subir Nag

Clinical Oncology: Basic Principles and Practice by Anthony J. Neal, Peter J. Hoskin

 

I wish you luck and peace of mind.

Best.

 

VGama

Swingshiftworker
Posts: 658
Joined: Mar 2010

I wasn't affected very much emotionally by the PCa diagnosis before treatment. 

I just viewed it as a PROBLEM that had to be solved and took the initiative by researching all of the options.  Everything I read indicated that my early stage cancer was completely curable, which reduced even further any anxiety I might have had (but I honestly don't remember any other than worrying if I would have to pay for the treatment myself).  I then just chose the treatment I wanted -- CK -- which was fortunately covered by insurance.

However, I was very much affected by the apparently initial failure of the treatment because of the high variability in my post-treatment PSA scores.  This gave me no end of worry because my PSA scores actually rose after treatment and then dropped very slowly and then rose again and then dropped again over the 2 years following treatment.

The last rise in scores even worried my RO and motivated him to authorize an MRI/MRSI scan to actually "see" if there was still in PCa there.  Fortunately, there was not and my PSA dropped.  The MRI/MRSI scan at the 2 year point that has pretty much NOW eliminated all of my worry about my PCa because it negates the worry about the PSA scores (which are an imperfect measure of PCa at best).  The MRI/MRSI scan results also reassured my RO enough to agree to a semi-annual (instead of quarterly) PSA testing schedule at my request.

The point of this story is to let you know that your journey has just begun and that the emotions you feel will change as you proceed.  You can only deal w/what you know. It's normal to worry but I don't think you need to obsess about the "unknowns" of your treatment choice -- HD BT at this point.  HD BT is a very effective method of treatment (CK is modeled on it) and you should have good results, but you won't "know" what the results are until you start getting your post-treatment scores.  Then, you'll either have something to worry about or not.

Hopefully, not.  Good luck!

 

silverfox1
Posts: 36
Joined: Dec 2010

T Paul,

We all react differently to our PC diag.. When I was first diag. with PC, I felt devestated and overwhelmed.  Did not know what to do or how to go about it.  In my situation, I had a Urologist that was not very helpful which added to my anxiety( I replaced him at once).  I felt all alone until I started using the American Cancer Society hot line.  The hot line is open 24/7 and all my questions were getting answered by the oncology nurses which helped me deal with my issues in a more positive way.  I also had sleepless nights and would get up and call the hotline with questions that bothered me.  I then spent hours researching my options.  Unfortunatly the books in the library are very outdated.  So I turned to the web for my research.  There are a lot of good sites available and tools to help you make decisions.  After countless hours of research, including this forum, I was ready to make a treatment decision.  Even though I felt very confident about my choice of treatment, which was Cyberknife, the anxiety was still present.  The CK oncologist was extremely confident, helpful and assured me that I had made the best decision for my treatment.  My Primary care Doctor also validated the choice.  Understand, that the choice I made was based on all my research and the results of the biopsy numbers.  My anxiety continued during treatments and until I got the results of my first PSA labs.  My PSA numbers dropped significantly giving me the hope that I was looking for.  As to your question about group discussion, I would recomend it as talking to others that had taken the same journey we are on did help me deal with my issues of mortality and anxiety.  Good luck and remember that you are not alone!

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