Concerned that I have hit BCR

The anxiety after another week has become crippling. I don’t get out of bed most days until 4 or 5, eat and then go back to bed around 11. I am trying medicine and therapy but nothing is powerul enough to address my fear of cancer. This is my own hell now.

Some people do have this problem with anxiety.

They solve it by getting on a drug that can take away the anxiety and bring back a normal world.

You probably have access to a psychiatrist through your medical services because you have cancer, Find out about it and see if you can get something to help you with this anxiety.

These are Common drugs for depression and anxiety that people have said helped them return to normal After describing feeling like you do now.

Wellbutrin Zoloft Effexor Buspirone, cymbalta

Get some help, you will benefit greatly. Your case is not that bad That you should be this crippled by anxiety.

Maybe try Lexipro. I have been on that for a while and it helps me. I’ve never had any side effects from that drug.

Yes, please find medication that will work better and possibly a better therapist that works mostly with cancer patients and has extensive experience in that area. Try also yoga and meditation with breathing exercises. They can work wonders for anxiety ! Just know that there IS a help out here and that you do not have to live with that debilitating fear. Do you have any friends or family nearby that can help you in person or at least be sympathetic "ear" via the phone. Talking about a problem and fear and letting it all out is very beneficial. Do you like pets ? Maybe having a small dog or kitten can help also.

Yeah, you're right...

You had the "surgery," the pathology report is excellent, the surgeon reviews it, goes over his notes, says he sees no issues, aka, without saying it, "you're cured...!"

Then, two years later, he hesitates when looking at his computer screen and your PSA results, then turns to you and says, "Kevin, this doesn't mean your PCa is back...!"

I remember our consult going over the pathology report and his notes. I'm thinking that the T2CNoMx means they do not have the technology (imaging) to say with assurance (Mx) that my PCa is not outside the prostate they just removed. They can say with confidence that the margins are clear, there is no ECE or SV involvement and that the few lymph nodes they removed as part of the surgery, I "found" the MSKCC nomogram site and punched in my clinical data, the GS weighed heavily I suspect in the outcome which was a 30% chance of BCR. So, on te other hand, 70% it doesn't.

If I was lucky at gambling, I might like those odds, I'm not.

In the back of my mind is that nagging thought, will it come back. Each PSA test and consult after surgery is a high stakes event, and then,,,damn!

I did during that time up until BCR just try and go about living my live and tuck away that 30% until the time between my PSA test and consult when it was like "Let's Make a Deal," Door #1...

I remember the phone call from my urologist with the results of the biopsy, it floored me, literally. I had my pity party, then gathered myself and got about the problem of "solving" my problem.

It was the same with BCR, that consult, his hesitation, floored me again, wait, wasn't I cured, why...It took me awhile to gather up my thoughts and call my wife who was in Germany visiting her sister to tell her the fight continued. Yet, like with the biopsy, I settled in, gathered myself and began figuring out what to do.

So, you are not alone in your reaction and thoughts.

Still, others have said, you may not, well, are not, in the "must act now" state.

There are a lot of variables.

Some may be in the lab itself. Some may be in your pre-draw routine. Some may be in the "controversy surrounding USPA vs the standard PSA (two versus one decimal and what it means.

In my experience over these last 11+ years, the USPSA can give earlier indications of recurrence. Still, the questions is, what is actionable clinical data. Single data points such as from ,03 to .04 likely are not. For my medical team and I we have decision criteria to inform our decision making.
'
Three or more PSA tests spaced three months apart that show increases, thus a trend.
Follow the same process, same lab, same time, same pre-draw routine
and... allow the PSA to reach between .5-1.0

Why the .5 -1.0? We feel it gives imaging a reasonable chance of locating the recurrence and informing the treatment decision without any risk out my PCa "getting out of control,"

My personal thoughts are the USPSA can be informative of an earlier indication of activity but by itself, a single result, is not a call to action. It is the totality of clinical data, one's GS, GG, PSADT, PSAV, things like decipher test, genomic testing, imaging results all come into play when making a decision.

I'm high risk, GS 8, GG 4, rapid PSADT and PSAV, short time to BCR...yet 11+ years later, here I am. Interestingly, I've been "on" treatment three of those years, "off" the other 11+. Why, who knows, I mean with that clinical data...I did fire one urologist when he insisted I should be on continuous ADT monotherapy, just saying.

Medical researchers have brought about a plethora of advances in treatment, Yes, some 30k or so die of PCa each year, so, no, we are not there. Yet, the number of cancer survivors continues to grow thanx in large part to medical researchers.

Are we there yet, curing advanced PCa, no. But, there is some evidence that MDT , SBRT, by itself can delay the onset of the need for systemic therapy. We combine therapies now for defined periods and when treatment responses are favorable, PSA drops to undetectable in the first say six months, then we come off treatment and actively monitor. There are clinical trials such as PATCH with the use of estrogen, avoiding some of the dreaded side effects of say Lupron, the EMARK trial with ARI monotherapy, heck, I recall reading one about bringing radio-isotopes forward in the MCSPCa state.

So, it's ok to be concerned and worried. But, you may not have to make any decisions soon and have time to both live your life, gather clinical data, read up on the literature such as the NCCN and AUA guidelines, articles and videos from sites such as PSCF and PCRI, talk with your medical team...

There is hope, I mean, I've packed a lot of living in these 11+ years. This year my wife and I have vacationed in Sedona, took the daughters and one boyfriend to Lake Tahoe, just got back from a week in Rocky Mountain National Park. I rode in the Garmin Unbound with my sister....

Kevin

By now I'm guessing you have seen your oncologist? Any updates? If not, the following worked for me and hope some of the suggestions might work for you. I just spent 3 days with our niece that is 8 months out from her small cell Lymphoma treatment and is waiting for her 1 year check up in Nov.. Lower body radiation similar to our area and similar symptoms. We did a deep dive into out relative treatments and experiences. It was actually the first time she had ever done a full debrief. We compared notes, laughed, cried and cussed at our cold ass doctors that NEVER referred to us by name. Talked about our doctors and their total disregard for our comprehensive health and how they had listening problems. We are only alone with this if we isolate and take ourselves out. Just took some Imodium due to post radiation bowel urgency and heading to the forest myself. My suggestion is to get the heck out of your home and get busy. Sometimes you literally have to force yourself to get out. 99% of you is physically healthy. The mind tends to focus on what is in front of you. We are powerless in regards to whether or not we are going BCR. I lived knowing I was going BCR for a year. I had to get to the magic .2 level to get treated. I made it my mission to live as full of a life as I could for that year until it change with treatment. Will my treatment work? I have no idea but it is working for today. And yes, I live with some low grade anxiety while waiting for 3 month and 6 month post tx testing. Nothing is promised tomorrow. I had to force myself to move and every time I did I was rewarded by feeling better. Untreated depression is a death sentence unto its own. Sitting on a pity pot just got me a red ring around my butt. My wife, a cancer survivor, kicked my ass to get me moving and wouldn't allow me to withdrawal to far within myself. I would stay away from Wellbutrin as it is known to gin up anxiety in many and Lexipro is a secondary to everything and primary for nothing. I took it and it made my depression worse. For others it sometimes works. Sertraline (Zoloft) worked very well for me and works for anxiety with many people. None of us are getting out of here alive so we have to find a level of acceptance and a way to live our best life one day at a time. My wish for you is to go ride a bike or walk in the woods taking in God's nature and beauty, go dancing, write a gratitude list, go do something with your friends, get involved in a home improvement project, do something for someone else turning your focus away from yourself. Find a way to live your best life. It could be a couple of years before you get treated if you are at .04. Best wishes on your journey. Please keep us posted on your progress. You are not alone with this unless you choose to be.

Same here, John. It's a great way to reduce the anxiousness. No side effects on my end either.

I have a lot of experience with anxiety and depression - pre cancer.

I've learned that as far as anti-depressants go, different ones work for different people, even different families (SSRI's, SSNRI's, atypical, tricyclic). The first one that worked for me was a tricyclic - imipramine - which happens to be the first antidepressant discovered. But other tricyclics didn't work. The SSRI's (Prozac, Lexapro, Luvox, etc) didn't work for me, but they apparently work well for some. There are even some atypical antipsychotics that may help, even if you are not psychotic.

My best result =was with mirtazapine, which is a bit unusual of an antidepressant. It is also prescribed to help with insomnia.

So it takes a psychiatrist who is willing to experiment.

But YMMV is very real - it really differs from one person to another.

Also, the advice about getting up, getting out, doing things - really is good. It can help a lot just to take a walk. It helps to have friends to hang out with. It helps to have other sufferers to share experiences with. For some people , talk therapy such as CBT (cognitive, behavioral therapy) helps.

As for anxiety - for short term, the benzodiazepines work within minutes to hours and work well. But those are not good for long term use, and can be addictive, or if not addiction, they can be hard to come off of due to biochemical tolerance. But if you have a scary event coming up, they can help a lot. Examples of these are xanax, klonopin, ativan, valium,...

Best wishes.

Quick update I am moving to 20mg Prozac up from 10 and using other meds ad hoc for anxiety and sleep. I now have appts booked for after my next blood test to meet with RO and MO. Thanks for all the sharing.

In addition to Lexipro, I also take Klonopin but only when things get really bad and I can’t sleep.