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The mental and emotional toll of BCR of PCa

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Posted 11/25/2017 1:44 PM (GMT 0)
We are all familiar with the physical side effects of the treatment paths we choose be they surgery, radiation, ADT, or any combination of these. Those of us that face a BCR also deal with second guessing our first choice of treatment and the anxiety about our future path. Since the end of my SRT in mid-July I have had a total of 5 1/2 days I would consider good days, 4 of those came when I left the farm after dealing with severe rectal irritation from the IMRT to vacation with my daughter in Colorado. My return to SD was interrupted by a severe anxiety attack that involved paramedics and 5 hours in the ER, this may have been caused by returning to unfinished farm work and also by a fear of my next Lupron injection due upon my return to SD. I have been using massage therapy and seeing a counselor for anxiety and taking meds for anxiety and lack of sleep. Last week I had my second PSA since ending the SRT with continuing HT, it was undetectable but my emotional response was completely flat, no fist pump no Hot darn or anything. I was more excited about getting 8 hours of sleep two nights later while undergoing a med change. It seems like I am emotionally drained and struggling to create joy following good news. I am still see my counselor, doing massage therapy, have scheduled an appointment with a different internist for aches and pains and have an appointment with psychiatry for medication management. The mental changes and emotional turmoil make it difficult to do farm work and interact positively with others. I have family and a good support group around me but it sure is a battle. I am sorry if this post is more a getting it of my chest post rather than a positive support post for others. Dave
Posted 11/25/2017 2:07 PM (GMT 0)
Dave, I don't think any apology is ever necessary for "getting it off your chest" here, it's a benefit of membership and we all do it at times.
You sure are struggling, so it seems. I don't really have much advice that wouldn't sound like the same old cliche's. And your depression and anxiety is far from abnormal, whatever that means.

But it does sound like you are being very proactive about addressing it. And that I. Itself is half the battle.

I'm guessing being on lupron is a big part of your mental state, I've never been on it, but from what I hear, it does strange things to the mind.
Try as best you can to find just one piece of joy in each day. Whether it's time with family, or just what I imagine must be beautiful surroundings in SD around your farm. Try to focus on that for a short while each day. And look forward to the time when you get off the HT.
And finally, keep venting here.

Good luck, stick around.
Posted 11/25/2017 2:23 PM (GMT 0)
Dave, sounds like you are rounding the bend and things will get better from here - - and they will. Thank you for sharing and I am pulling for you. Rust
Posted 11/25/2017 3:39 PM (GMT 0)
This PC is as much a mental/emotional thing as it is physical. Depression, anxiety, and other emotional problems are common. More common than some what to admit. My doctors were up front with the possibilities before treatment started. The treatments HT, and RT can cause actual chemical changes in your body that mess with your emotional/mental state. Even surgery can do that.

Add to that stress of treatment, the body changes, the loss of sexual function and other side effects and it's a wonder to me that more guys don't report depression and other mental symptoms.

You need to treat the whole man, cancer, body, mind, and spirit.

It's something that should be talked about as much as we do about ED or incontinence .

Andrew
Posted 11/25/2017 3:54 PM (GMT 0)
It seems that our urologists, surgeons, RO's and MO's for the most part do a good job of explaining the physical SEs and how to deal with them but seem to totally ignore the possible mental and emotional SEs. We are left wondering if we are the only ones going through these, and feel left alone as to where and who to turn to too find help from someone that has experience dealing with cancer patients and unique problems we deal with. Dave
Posted 11/25/2017 4:20 PM (GMT 0)
Dave, you are 100% right. They are trained to treat an illness, not a person. The good ones don't lose sight if the fact that patients are people, not objects to be fixed, and they talk about this stuff..

Tall Allen talks often about Mindfulness As helpful for anxiety , worry. As I started reading about it, I found that it's taught in over 250 hospitals around the country, where they focus on helping cancer patients maintain a good quality of life, mentally. It might be worth googling Mindfulness meditation and your city or town.

And always remember you are not alone, as Andrew said, so many of us have gone through or are going through a period of depression and anxiety.
Posted 11/25/2017 7:19 PM (GMT 0)
My urologist touches on some of these helpful ideas but in the limited time during checkups does not get to go into detail. My counselor was working with me in our last session on a relaxation technique that very closely resembles Mindfulness but have not had the same success as when she was coaching me through it during our session. Dave
Posted 11/25/2017 8:08 PM (GMT 0)
I found that Mindfulness really began to kick in after about 2 months of daily practice. Staying focussed on the present moment takes practice. While each session may be relaxing during that session only, it has to become a habit of being. For me, I had 57 years of imagining scary future scenarios and ruminating about past decisions. It takes time and practice to change such an ingrained mode of thinking. I was able to find a place nearby that offered group practice sessions. I found the group and the class helped me stick with it until it became second nature.

It won't get rid of the racing thoughts entirely, but by being more alert to what is going on in my thoughts and feelings, I am able to identify them earlier before they consume me. Somehow, becoming more aware of it helps me get through it much more quickly.

Meanwhile, I think it's a good idea to discuss with your doctor taking anti-anxiety meds. That will calm your mind down to a place where you can even be receptive to mindfulness-based stress reduction. It may also help you sleep better, which is necessary before any anxiety reduction can work.
Posted 11/26/2017 1:05 AM (GMT 0)
Talk cry talk more cry more vent it's fine,we are only human.You have to get that medication management spot on it will help heaps.Try stay positive is the best advice I can give.Keep a paper bag with you and if you feel an anxiety attack coming breath into the bag.
Posted 11/26/2017 3:03 AM (GMT 0)
Dave my wife and daughters keeps me going, You mentioned spending time with your daughter, don't know what I would do with out my daughters they are good for our spirits.
But also I must keep working to stay ahead of the Lupron. It makes me sleep better at night. I have been encouraged by some to retire but by staying active with new challenges and projects I feel like I'm alive and not letting PC win. I have been through a lot of the same problems as you and with time it will get better. It helped me to read about PC and become educated about new PC treatments, but if your on HW you probably already know that. There are many here with exactly the same situation.
I have ask my doctor at MD Anderson to get me off HT and he is working on a cure for PC so I have hope to get off lupron some day.

My urologist nurse gave the lupron shot in my arm for the last 3 years, now I changed to my MO for the injection and they gave the shot in the hip, the hip much better no pain.
Larry E
Posted 11/26/2017 4:56 AM (GMT 0)
rancher dave......I had my first anxiety attack at age 5. I've had several since. One of which landed me in an ER. PCa has exacerbated....not my anxiety per se'....but....more of a lifeless feeling. It's just different than before.

I'm not good at cheering people up.....but I just want to thank you for sharing....what many feel (at least I can and do).....thanks man.....

hang tough AND be cool man

(keep posting)
Posted 11/26/2017 6:32 AM (GMT 0)
I can certainly identify with the mental and emotional aspects of getting any cancer diagnosis, much less one that's not such good news. Over a decade ago I had a melanoma diagnosis and had a 2-3 surgeries and a month of high-dose interferon treatments. Four years ago, I was diagnosed with incurable (but hopefully manageable for a while) very metastatic prostate cancer at age 65. I cried, I worried, I feared, ... you name it.

One thing that's help me has been having the good fortune to have found a weekly cancer support group of advanced cancer patients (and/or spouses/caregivers), facilitated by a physician who has been doing that kind of thing for the past 20+ years. The "blend" of mental, emotional, medical, supportive aspects can be really helpful, particularly in the first year after a diagnosis, and later on, as the course of one's disease and "life's" turning points develop as they may.

Charles
Posted 11/26/2017 2:22 PM (GMT 0)
Stop by anytime Dave when you need or want to talk about your situation. When I was in the middle of Lupron side effects I had to keep reminding myself the way I'm feeling (mentally, emotionally and physically) was the drug, not me, and this too shall pass. It's difficult, really difficult to deal with the SEs but the drug I consider a life saver (or life prolonger.)
Posted Today 3:36 PM (GMT 0)
Hey Dave. John's advice is good - remembering that it is a side effect and it will pass helps me. The other thing I've found is that exercise clears up my mental state for a day or two. One good (?) effect of Lupron was getting me back into the weight room and a more serious exercise regimen.
Posted Today 4:47 PM (GMT 0)
Thanks for sharing Dave. As a farmer you are very accustom to planting now for some future harvest and I'm sure that circle of thinking is also a part of your everyday life. As a business owner I have these same "planning" characteristics but I have worked hard and continue to learn to live in the moment and ONLY the moment. Breaking that circle of thinking has been difficult, but I feel its made me much more intuitive of what is around me Right Now and has made me better person in many many ways. By reaching out, acknowledging your pains and fears is the first step. Feel free to vent anytime around here.
Posted Today 4:48 PM (GMT 0)
I haven't had an emotional collapse since learning of my .40 PSA post-op. I would categorize it as a "surreal fog of mild depression". I go about my daily activities but prostate cancer is always on my mind even if I can drop it back to #3 or #4 on occasion. I want to be proactive and continue along the path to a cure but must admit, I am disappointed with the results so far. I need to maintain a positive attitude and "carry on" and want to limit the impact this is having on my wife and daughter. So far I think I'm being successful in that regard but wonder if I'll be able to maintain once the Lupron side effects kick in. I'll just have to best deal with the potential mood swings and more emotion as they come. My plan is to double-down on exercise and actually schedule a meditation moment twice a day to get my thinking in order and attempt to reduce mood swings and/or anxiety.
Posted Today 6:29 PM (GMT 0)
Dave... Great post.. You have hit it right on the head about the struggles that I am going through. I was just discussing this with my wife last night in bed. I try to hold up this front that I am doing fine but it just gets to the point that I have to get honest with her. I guess I am trying to protect her from more than she is already experiencing. That is why I come here every day to check on how everyone is doing and once in a while I'll post a rant or a vent or a comment if I think I can be of some help on a certain topic.
I can only tell you my experience and that is , I have a counselor, I take anti depression meds. I have trouble sleeping and have taken sleep meds and anti anxiety pills to help sleep. The problem with those (for me) is that I feel tired and groggy all day. I've just recently stopped taking those meds for sleep and feel better ,even if it is more difficult to sleep.

I don't know if there is a answer as this PC thing seems to effect everyone differently.

Thank you for reaching out and being honest with your struggles. Many (and I think most) feel as you do at times, others seem to struggle more. I think that the fact that not having surgery and not getting a true pathology report makes it more difficult for me. Being G9 and seeing how many other high risk guys go through surgery and come out with a higher path report, many have to have SRT .... my mind starts to work on me . My anxiety comes from the not knowing for sure.

I am just getting to the end of my primary treatment( see sig.) so I won't know for a while if the treatment was successful. So far I know that the HT is works.

Dealing with the SE of treatment is something I seem to be getting somewhat a handle on, at times.
I just try putting one foot in front of the other and keep,keeping on.....I have no other choice.

Hang in there ....

Battle on brothers!

The Artistic One- Mark
Posted Today 7:44 PM (GMT 0)
Dave—
It’s been a few days since your initial post in this thread. How you doing today?
I keep thinking about the timing of your post. The holiday season, starting with Thanksgiving, can be such a stressor when you’re going through a period where it’s hard to be “jolly.”
I got a call from my PCP last night, out of the blue. She was just checking up on how I’m doing — she knew I’d been through another round of consults with specialists, wanted to hear where my mind was at and to let me know I’d been on her mind and she was available if I needed anything. Really raised my spirits.
So even though I haven’t been contributing to this thread, I just want to let you know you’re on my mind and I hope you’ll keep us updated from time to time. Hang in there.
SP.
Posted Today 8:30 PM (GMT 0)
Thank you everyone for the positive and supportive posts. I first got the idea for the topic on the 23rd but it just didn't seem right to post a depressing topic on the day when we all should be happy and giving thanks for the many good things we receive. Often tines when friends ask how I am doing the answer is usually OK or some days are better when I often feel like saying terrible or rotten. There are also times when the phone rings and you just wish people would leave you alone. This past week has been better with settling in to a med change and adding a new internist to my health team. I also had the opportunity to help someone else this morning. A friend of mine who did RT for breast cancer about the same time I did my RT is also dealing with extreme anxiety, she called and left a voice mail sounding worked up, I returned her call and we spent over half an hour on the phone. It was her turn to vent to me and we talked about some of the things that seem to help me and I gave her some ideas that might help her situation. She also feels lost and doesn't know who or where to look for help. Your supportive posts made it possible for me to hopefully help her also. Thank You and Blessings to all of you. Dave
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