I know that patients of a disease that is 100 % male has a lot of folks "gutting" it out, and being tough. Me? I'm having problems dealing with stuff.
Maybe it's the ADT (it'll be a year in December), maybe I'm a big wimp, but there are times when the reality of my situation gets to me, and I experience what might be depression. I literally lay in bed and think about what the endgame is, and it's scares the heck out of me.
In addition, I've had a lot of weird medical tests the last several months, cardiac, pulmonary, and gastrointestinal intestinal, with most of them negative. Apparently I had a pre-cancerous polyp that was removed, and have some nodules in my lungs that have to be monitored. I also had a cough that lasted a month and a half, but that went away right before my pulmonary appointment (ha!).
The irony is that my treatment might have been curative, and it all might turn out ok. My numbers are good. But my mind goes to dark places.
In short, I've been feeling frail, but also wonder if a lot of has been made worse by my state of mind. I'm thinking about finding a psychiatrist who can evaluate me, and prescribe drugs, if needed.
Has anyone else gone through similar problems? How did you deal with it?
Thanks in advance.
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Jpburns
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Hi - we’re close to the same age. I have been dealing with this disease 19+ years. When I was first diagnosed, I went down some very dark alleys. I shared this with my PCP, he put me on antidepressants. It took a few tries before I found the right one for me. Around 6 years ago, when I was deemed castration resistant, I started seeing a therapist weekly. This helps me quite a bit, especially since my body has failed Erleada, Zytiga, Provenge, docetaxel, Pluvicto and now Keytruda.
Recently, I was asked if I wanted a psych evaluation and I said “hell yeah”. A few things I have learned, along the way: you cannot carry the burden of this disease by yourself, if you think you need help-ask for it, if any type of help is offered-accept it (you can always turn it down later), be kind to yourself, be kind to others (I have messed this up too many times), listen to your body. And most important of all, remain positive. I do this with humor (sometimes it’s dark). I hope this helps.
Thanks for sharing. I'm trying to find a psychiatrist locally, but want to get a referral from the social worker at my oncologist, as opposed to pulling a name out of a hat. Also, lots of the clinicians here in Athens Ga mostly deal with students and their stresses.
First of all, Mr. Burns, is a huge thank you for the excellent “comic book.” It has been so useful in helping my grown children understand this sea we are all swimming in. It’s wonderful work, I am sure you are rightfully proud of it!
I only occasionally struggle with those dark thoughts, mostly as testing time (labs and scans) get close. I play all the ”what if” scenarios on my mind and its no fun.
However, I think I am usually reasonably upbeat; since I am stage 4 with widespread bone mets, I have no unreasonable optimism, but my thoughts are generally OK.
I credit my coping to a couple of things: first, I am 85 years old, so my expiration date is pretty close anyway, cancer or no cancer. Dang, this lousy disease will kill me if I live ling enough, but 85…
The second thing that keeps me on a more or less even keel us taking care of my wife (of 64 years!). I still do all the meal planning, shopping, meal prep, and clean up. I really enjoy this part of my life.
Oh, one more thing; my wife and I talk about this thing a lot. A lot! She is a great listener and encourages me to “own” my feelings and fears as well as my happiness.
Anyway, I really appreciate your contributions to this group; I admire your honesty and openness.
Take really good care of yourself, we need you here!!
My wife is also my soulmate, and my best friend. Part of the anxiety is for her sake; I worry so much about what she's going through. I often wonder if I would be as wonderful as she's been, were our roles reversed. She's encouraging me to find some help.
Almost everything has already been shared in previous responses. Perhaps what I can add is this: I meditate regularly and have built habits that keep me connected to the universe, which I feel supports my healing journey. Each day, I thank the universe—or God—for the joy of the day I’ve experienced, never asking for future protection. Every morning, I wake up, check in with myself to see if I feel well overall, and then look forward to the wonderful moments awaiting me. Being grateful, living fully in each moment, and appreciating them as if they were timeless—this is my ‘secret’ to enjoying life.
I’ve also re-arranged my life to align with this philosophy, choosing to live in a summer house by the sea, surrounded by my family, our cat, a Mediterranean garden with olive trees, and a small boat. Life will continue for as long as it will, and that’s perfectly fine; it’s good just as it is.
Thanks, Darryl. I think this is just something happening because of a rough year (treatment, a buncha side effects...) and isn't really a chronic thing with me. I mean, I've been somewhat anxious all my life (for... reasons), but its not at normally the level where it's been a problem. And even this is transitory and episodic.
I'm going to take positive steps towards resolving it, like finding a psychiatrist and getting diagnosed. Plus we're taking a trip to Paris this Christmas, which should help.
It sounds like you’re going through an extremely challenging time, both physically and mentally. The anxiety and dark thoughts make complete sense given everything on your plate. Cancer treatment, even when potentially curative, can bring on a wave of mental and emotional challenges. Hormone therapy (ADT) can also heighten emotions and bring about feelings of anxiety and depression due to the shifts in hormones. It’s a lot to handle, and it’s perfectly okay to feel as you do—no one’s a "wimp" for struggling with such immense life changes.
It’s really good to hear you're considering seeing a psychiatrist, as mental health support could help in managing these feelings. Here are a few things that might help, based on experiences others have shared:
1. Therapy and Counseling: Finding a therapist, especially someone trained in dealing with chronic illness or cancer-related issues, might help you work through some of these dark thoughts. Cognitive Behavioral Therapy (CBT) is often beneficial for anxiety and depression by helping to reshape negative thought patterns.
2. Mindfulness Practices: Practices like meditation or mindfulness can sometimes ease the weight of ongoing worry. These techniques focus on grounding yourself in the present, helping to pull you out of the spiral of anxious thoughts.
3. Support Groups: There are support groups specifically for people dealing with cancer or for those on ADT, both online and in-person. Talking to others who understand exactly what you’re going through can provide comfort and lessen feelings of isolation.
4. Medication: If it turns out you need medication, that’s nothing to be ashamed of. Many people going through difficult medical treatments find that medication is necessary to maintain mental health, even if it’s just temporary.
5. Stay Active When Possible: Gentle physical activities like walking, yoga, or even stretching can sometimes help with mental health, as they release endorphins that can naturally uplift your mood.
6. Small, Enjoyable Activities: It can be helpful to add small activities into your daily routine that bring a sense of joy or comfort. Reading, listening to music, or engaging in hobbies, however briefly, can give your mind a much-needed break.
Remember that you don’t have to go through this alone. Reaching out here is already a strong step, and seeking professional support is one of the best ways to find additional relief.
I am double checking everything with ChatGPT even what my oncologist said. I am aware that ChatGPT is not perfect, but we humans are also not perfect. ChatGPT can analyse the statistics of a clinical trials and you can use it for your benefit. I sometimes a better problem solver than ChatGPT. I am aware of its downside.
For example ChatGPT could not recommend how to get back my lost conversations history, but I solved it. You simply log out and log in again and than your old conversations are restored. If you spend more time using ChatGPT you will become more comfortable using it because you will no that this tool is not perfect but very often very useful and a convenient first step. I am very often using it in order to learn more and than I can decide myself, or I can ask better questions and prepare myself for a conversion.
My old psychiatrist would say that our anxiety will go away if we solve our problems like example I was also coughing 1.5 months like you but it finally went away and my anxiety also diminished. I believe it was probably a seasonal allergy or acid reflux or something related that I was eating late and I also have sleep apnoea, or a combination of all. It was not a cancer in my lungs.
My husband has also had a cough for about 6 weeks! Chest xray clear, lungs clear when doctor listened. All lab work normal. Did you have any testing to figure out what was causing it? And it just went away on its own?
I'm suspicious it was the Abiraterone, which I have suspended, in consultation with my oncologist. My latest numbers are still good (undetectable) so I'll keep doing this until it no longer makes sense. I think I feel better reducing from doublet therapy to just Orgovyx.
I had an X ray which was clear, than I took a strongest antibiotics for 15 days, than I went to the private hospital to get my medication and I had to wait for 30 minutes there and I said myself, wow I can breathe now quite well. Then I went to the street to my bank and I realised that my breathing is problematic again. In a private hospital the filtration system is perfect while the street was full of dust and pollen. It was a read Flag. I was also thinking that maybe while I was sleeping during the night the food get into my lungs because of my sleep apnoea and I adjusted the pressure or the CPAP machine. I don't believe that it was an infectious disease, but I am on antibiotics therefore it would resolve. I was afraid of Lung cancer but it's probably not because I don't cough anymore. I was also thinking about the side effects of some drugs or a drug combinations. Thanks God I am fine now whatever the reason was.
The one thing that wasn’t done was testing his sputum. He was prescribed a cough medicine he started yesterday so we’ll see if that helps. He does have history of allergies. He’s using Flonase.
Of course it can, because you are chocking and the contents of your stomach is going up and up through your esophagus and if it ends up in your lung you can even develop pneumonia and that is dangerous. (My sleep apnoea specialist explained that to me. (I realised that with the sleep apnoea machine CPAP it doesn't happen so often if at all.) That's why it is better if you don't eat 5 hours before bedtime. If you eat it something light.
I recommend the latest sleep apnoea machine from Resmed. I am using it for more than 10 years. The latest version is Resmed S11 autoset. Actually all the S11 machines are autoset now, but you can use it as simple CPAP machine. First you determine the pressure by using it in the autoset settings and than just switch over to a simple CPAP setting. The pressure requirements could change therefore it is good if you gain or lose weight that you use it again in an autoset mode in order to determine the new CPAP pressure. You should hopefully get support from your hospital etc. are you in Britain?
Even just acid reflux could cause coughing. Or GERD . I know it for long time because my old GP said that.
I'm only kinda joking. I also use ChatGPT to try to de-gobbledygook the medical language on reports. I've caught it making a few mistakes, though, so I don't entirely trust it.
Yes, you can learn a lot by checking what ChatGPT said and than when you caught ChatGPT making mistakes than you ask him again about the mistake and than ChatGPT apologize. You should understand what you are doing, and I am fine with that.
Maybe, you should be very respectfully towards the AI in your own interests because they profile you. I always say please etc. I know that it is only a software and it is programmed.
I take an indica gummy with CBDn and it helps me get a good night's sleep. If I get up to pee (1x) or wake enough when I roll I'm able to get back to sleep.
Getting a better night's sleep help my overall attitude and outlook and mitigate the depression that I too have rode the waves of on this journey.
There was a REALLY rough patch I went through last April and I took a sativa gummy during the day so it wouldn't make me sleepy.
I don't take either on any regular schedule but when the waves of overwhelming thoughts hit. It helps me calm the storms of dispair so I can get back out of the rabbit hole!
I have access to indica or sativa. I have used CBD gummies too for sleep. I am curious about psilocybin 'shrooms. Supposed to be helpful with depression or so I've heard anyway via documentaries and web articles.
A good attitude can only help you. You have total control of your attitude. Reboot your thinking. You have much to be thankful for! Reboot when those feeling come.
Prayer and relying on my faith and the word of God overcomes any worry or anxiety I've had in the 13 years of treatment. Many verses in the Bible that help with worry and anxiety such as Phillippians 4:6.
"Sorry to hear that" = pretty condescending to people that don't share your beliefs. The whole thread is about the guy going through a rough time, so please have some social awareness and read the room.
Thank you for sharing your thoughts, as they are very similar to mine. I was diagnosed earlier this year at 59 YO. Immediate meds and treatments assaulted a very healthy and active lifestyle. Combine that with hormone therapy and you feel like you're losing your mind. My oncology center offers several resource - acupuncture, counseling, exercise, and others - that I have taken advantage of. Back on Fluoxetine that I had been on years ago for generalized anxiety.
I think just taking action helps relieve the anxiety. Whatever you choose to do, or not, just take action and get back in some level of control of your life and your future. I find this helped me even before this obnoxious diagnosis. I think back to buying my first car or my first home and all the anxiety of a big decision - once the decision was made it was over and done and the anxiety left. I liken this a bit to that - only in that taking action and moving forward relieves the anxiety.
My main tool against anxiety is reading this forum everyday. It is so helpful to read posts from others in similar situations. Your posts in particular have been very helpful to me. I remind myself that anxiety is nature's way of prepping your body for anticipated stress of the unknown. Initial stage of the fight or flight response mechanism. Knowledge is the best tool against anxiety and reading what others are going through fills in the questions of the unknown.I coughed thru the night for six months straight. Effected sleep, felt like I could never get a good night's rest. After a suggestion from a friend I bought an adjustable bed, raised the head about four to six inches and haven't coughed a single time since. I remember my grandparents having blocks raising the ends of their beds and reading Amazon reviews for bed blocks find maybe it's an age related thing for post nasal drip. Find the adjustable bed is a bonus all around.
I really recognize so much in what you’re describing. My treatment have been in all massive and with good response; over the last half year I’ve responded well with PSA < 0.1 3 months and 6 months after radiation so the treatment is working well but still I go down in dark places and that stresses me and make me anxious. Like someone wrote; when it’s time for tests and measurements then dark thinking, stress and being anxious is running all time high.
I’ve also been on ADT almost 1 year now at the end of December. However I changed from Firmagon in July to Orgovyx and I’ve been on Abiraterone since April, so 8 months at the end of December.
I belive that Orgovyx together with Abiraterone have really made me more fragile in my mind and some time it scares me how low I can feel, how much it mentally make me fatigue and everything feels like going uphill and takes down my mood even when I’m with my loved ones even when they also boosts my mood.
Even thinking that, even if I continue to respond well to the medication, I have at least 1 - 2 years being on the medication before the possible next steps starts; phasing out both Orgovyx and Abiraterone and then start to worry what that means. Not to mention what my state of mind will be if my PSA starts to rise despite I’m on Orgovyx and Abiraterone.
I really believe that Orgovyx and Abiraterone can mess up your mind, make you feel fragile and boost a dark mind. But then of course I keep fighting it in my mind because I’m much more frightened of the possible impact not staying the course and most importantly, I’m not ready to loose all my loved ones, so small steps and one day at the time
But in conclusion, you’re defenitely not alone in this day-day struggle my friend.
Thanks. I appreciate you sharing stuff with me, and the other folks here. Yeah, I think part of it is feeling so damn fragile, something I'm not used to. But I am exercising often, and planning fun trips (Paris in a month!) and other things to distract me. I'm trying to make another comic about what it's like after your primary treatment, but it's been hard to focus on a theme. But I'll keep working at it.
Like I said elsewhere, I am taking a break from Abiraterone as I think it doubles my side effects, and because (so far) my numbers are good. Not suggesting that to anyone taking the drug, but my oncologist supported my decision.
France , I just came back 2 weeks ago, the place revelation for me, you will love it.
I walked on the eggshells of anxiety for a few months after I went from the 3 mo to a 6 mo. shot of lupron after a year and a half or treatment. Hormones are really something. I worried about the craziest things. After my primary put me on buspirone, that just made me loopy, I quit and bumbled along for another couple of months and since then have had either a psychotic break, a long manic episode or found out something deeply hidden in my self, that I’m embarrassed by and/or deeply grateful for (think skirt). I feel good about it. I don’t mean to freak people out in this great forum, the brain and hormones are powerful and the damnedest thing happen in our brains. If it all comes crumbling down then I’ll hit up a shrink.
BTW I saw your comic on metafilter a foundational piece of the internet for me.
Oh, we've gone to France a lot over the last several years. We really like the lifestyle. We rent an Airbnb in a non-touristy area and pretend we're living there. Walk everywhere. Buy food in marchés. Mostly Paris, but also Lyon and Nantes
Also - I was a fairly early adopter of metafilter, but have not looked back there until recently.
Oh damn, writing my silly post I forgot the most important part.
A weekly 0.05 estradoil transdermal patch and a nightly 3 mgsublingual melatonin just before bedtime
When I was going through my anxiety I associated the moodiness with female menopause, I looked around and came across estradoil that some woman use for their symptoms, read the comments at this site
drugs.com/comments/estradiol/ and many of the comments mention moods and hot flashes. My Onc let me try it siting hot flashes which haven’t bother me much, I wanted it to calm me.
Since ADT is more or less the same as HRT for the MTF community I went over to reddit and saw some reports of estradoil’s calming effects but they use much stronger dosages ( those poor girls are in a hell of a panic after last weeks events). I know I’m messing with SOC and the estrogen might light a fire to the cancer but I’m at the point where I feel like I’m building a house every morning just to get through the rest of the day. I’m sleeping good and after I build my morning house, feel fairly well, most days I have a couple of hours as a whole human, as like never before, digging whatever this feminization is, riding the wave.
Please, consider this as highly anecdotal but it seems to work for me, and could be the placebo effect.
Walking in France is fantastic, everyday beat to the bone ,every morning you can’t wait to do it again
There is a documentary called,DOSED; THE TRIP OF A LIFETIME. This is truly something that you must watch. It will cost you a few dollars $8.00 but can save your sanity and open up a new life for you. It truly is a wonderment. Here in Vancouver Canada they are running trials for the use of this for people in many different situations. This will help you Mr Burns. Let me know if I can assist with you finding this award winning film 📽️.
I've done my share of hallucinogenic drugs (lsd, mda, Psilocybin, peyote...) in my college days (late 70s) and got nothing out of it besides an evening's entertainment. But thanks for the suggestion.
You get it : " Today is the day youu worried about yesterday " .
As Geo Burns said to Bob Hope when he said : " Geo at our age , Do you ever think about dying ? " Well Bob. First thing I do when I get up in the morning is read the obituaries -- If my names not there I have breakfast .
Keep on smiling - Laughter beats all medications . Age 85 and everyday is a plus .
I saw a therapist that helped me deal with my diagnosis and the baggage I carried from my parent's cancers. I also began to practice Mindfulness, which helps keep me in the present moment and seems to shorten the amount of time I spend ruminating. It took about 3 months of daily practice in group classes, but it finally became a habit.
I don't watch news anymore. But keep up with it elsewhere. Reliable, usually international sources.
For the last week, after the election, I've called for a moratorium on "the news." I'm too bummed out with the results. No doubt my loss of faith in my fellow Americans has added to my feelings of helplessness.
There is no such thing as one's thread. Your news sources are terrible...The person you are referring to was never convicted of rape. I guess you'll be Sappy. I'm happy like the majority of voters.
I also read that places like Harvard, Yale, Columbia, Georgetown etc recommended crayons and coloring books to aleve anxiety. You being a cartoon, could find it helpful.
Right now I'm having my morning coffee and getting caught up on the news. Same thing I have been doing for nearly 40 years. Then I'll go to work. Put in my 8 hours, go to the gym and then spend the rest of the evening with my wife, daughter and mother in law. I did this when my vote was for the losing candidate as well as the winning candidate. In other words, I'll be Happy, not Sappy.
I wasn’t so much depressed as I was anxious. I wasn’t able to sleep and get adequate rest. Venlafaxine (Effexor) helped me sleep and get my head around everything. I also later learned that it probably was helping minimize my hot flashes. I have now weaned myself off of it and I’m in remission. Hot flashes worsened but I don’t want to take any meds unnecessarily. If my situation changes, I would not hesitate to go back on the medication.
Yeah... it could just be anxiety (constant for a year). But I've also experienced moments of profound sadness. Thats why I want to get diagnosed by a psychiatrist.
i’m sorry that you’re feeling the way you are feeling. I’ve been there. I considered suicide at one point but sought counseling and would not consider that again. After being on ADT for seven months, my anxiety level went through the roof when I was unable to get a good nights sleep. I tried a bunch of different prescriptions that my oncologist gave me and they all were too heavy duty and I was non-functional the next day. One of my friends suggested that I try low-dose THC/CB D gummy’s. They are legal in Illinois where I live. They have been life-changing. My anxiety level has dropped to zero. I take a Camino brand 1 mg THC gummy. I don’t get high or buzzed. I just get sleepy.
ADT sucks. Good luck to you on your journey and I hope something helps you reduce your anxiety.
I realised that if I neglect walking because of rain for example I feel not so good like otherwise when I am walking a bit more. Of course you should have appropriate rest in order to recover. (I am not encouraging killing yourself.) Rest is very important too.
Several people close to me have been on anti-depressants for years, much to their benefit. This is why I'm seeking a professional evaluation, to find out if that's needed. But if meds are indicated, I will certainly give them a whirl.
Jpburns, IMO - you need to do YOU and that entails looking deep inside. It matters not what others advise, it only matters to them BUT you can take that advice and use it to your advantage.
Sounds like you have a plan and I am wishing you the BEST of LUCK. 👍👍
I won't know if I do or do not have an unbalance until I'm diagnosed. Depression can be caused by anxiety over a long period of time. I'm not saying I am clinically depressed, I just want to find out.
Did I mention I've been on ADT for a year? I am lucky to have my wife of 35 years, but anything "energetic" is kinda off the plate until I end this treatment, if you'd get my drift.
Was a joke….I hope things work out well for you. Life and humor take a wildly different perspective after a PCa diagnosis! Good luck JP! BTW - I hear ya! My wife went MIA after my surgeries, and hasn’t even touched me since. That was in 1996. We sleep in separate rooms. The only thing “energetic” here is my left hand.
About finding a (good) therapist, which sometimes can be hard to do, I just want to add that online therapy can work great for some people. When I was at my lowest after one year on ADT I started therapy. I met her one time but after that I did ”zoom meetings” online with her instead and found it to work just as good.
The ease of doing the therapy from home made it easier for me to keep doing it, and I guess it would be much easier to find a qualified therapist if it’s online since you’re not limited to finding someone local.
Yeah, good enough reason to do it in person then. Also, I agree with you about having someone evaluate the need for some prescription drugs. I needed that for some time (combined with therapy) to get me to a better place mentally.
Hope you find something to help you Jpburns. Anxiety certainly sucks, and in our situation we don’t need that to deal with on top of everything else.
//Best wishes from me in Thailand (celebrating an anniversary with my wife)
I had similar experiences in the past and turned to other mood altering substances including alcohol. I went through 12 step program and church. I found relief in both venues that helped me a lot. I had to admit to myself that I was powerless over certain things in my life and came to believe that a power greater than myself could restore me to sanity. I made a decision to turn my will and my life over to the care of God as I understood Him. Took an inventory of myself and I did the steps with another person called a sponsor. They have these same similar steps in different programs pertaining to the issue. Then after a few years I went back to the Catholic Church with a better understanding of God and Jesus is everything I need plus we ask for intersession of the Saints. A lot saints have a particular power given them by God like St. Peregrine is the saint to intercede to God on behalf of cancer patients. There have been miracles recorded in asking for saints intersession. Jesus is the healer and has suffered the most. I learned that trying to manage issues completely out of our control and alcoholism for an example is depressing because we cannot control it. But God can. I have found that when I turn things over to Him that I can’t control and stop trying to control them I have a much better day no matter what I am going through. Jesus has suffered way more than anyone else. Jesus overcame the world and conquered death. He says if we follow Him we will have eternal life in heaven. This hope and faith that we have is a gift from Jesus and it is bigger that cancer. Also we can use our suffering and offer it up to God for the conversion of sinners. My suggestion is turn to the Lord and He will help you! Maybe find a faith based place to help nurture an experience with Jesus for a example I would suggest a Catholic Church. Hope this helps you it helped me! I think sometimes prescription drugs help in certain situations but also maybe another drug is not the answer. I believe faith and hope in God or Jesus would defeat depression that has been my experience. God is good everyday! Everyday God is good! Peace be with you! I am not a doctor and I am not giving any medical advice please see a medical professional for that purpose! Just posting what has worked for me and others! Have a good day!
and I did go to a therapist or two over the years looking for a drug that would help with anxiety, depression and I did not find a drug that worked for me. One drug had me in a zombie like state and I gained a bunch of weight and got sleep apnea as a result! I have found for myself that spiritual help as described above is what I needed that worked for me the sacraments in the church is what has helped greatly!
If you are taking ADT, that is the culprit (well, the culprit is really you low(er) T). From men here, the side effects to ADT range from "what's the big deal; a few hot flashes" to "OMFG, what is happening to me?" I was in the second camp. All of the physical side effects plus a roller coaster of emotions: from despair, depression, suicidal thoughts to crying spells feelings of rage and anger. It wasn't pretty. AND, to top it off, my docs were worthless regarding my emotional and psychological self. I should yelled from the rooftops that I was a mess and I need help but I did not. The macho thing? This will pass? Tough it out? Who knows? So, talk with them, see a counselor, join a therapy group, demand meds if appropriate. As the song goes, "It ain't you, babe."
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