Active Surveillance and anxiety

[Aussieguy1]

I’m on Active Surveillance. Gleason 6 diagnosed early 2019. PSA at the time 5.8. Currently 5.4. Two core samples out of 10 showing 80% adenocarcinoma. Brother and father also diagnosed with prostate cancer. Brother radical prostatectomy several years ago. Do other people on Active Surveillance suffer from anxiety leading up to PSA testing and other diagnostic testing. I find I’m very anxious awaiting test results. What do others do to relieve this anxiety? Thanks anyone for your replies. I know I am in a lot better position then many others with this disease I wish everyone well on their journeys.

[Jimhoy]

It’s likely called the same, but soo many of us on vacation from ADT feel your pain!! I have no suggestions to relieve the anxiety and doubt there is one )other than the all mighty drugs)!!! There aren’t enough things to occupy your mind, especially when your head hits the pillow!!! It’s human nature!!!

I’m sure it’s no relief but you’re far from alone!!!

Jc

[Aussieguy1 in reply to Jimhoy]

Thanks Jimhoy.

Support groups such as this one are invaluable in showing that I’m far from alone, that in itself helps. Thank you for taking the time to reply. I’m fortunate compared to some people here.

I’m fine between waiting for tests. It’s only the period leading up to getting them. I’m confident in my urologist approach to active surveillance. I get concerned due to family history as my brother is having a hard time with this disease. But we are all on a different journey with this depending on progression.

Again thank you for reply.

[Jimhoy in reply to Aussieguy1]

I get my bloodwork done a week or so before my appointment. The healthcare network where I am seen and tested has a portal where I can get results the next day. As my Doc fumbles through his notes, I tell him my results!!!!!!

Jc

[Aussieguy1 in reply to Jimhoy]

Being able to access your results that quickly is ideal. My specialist appointment is usually a week after the tests and he won’t release the results over the phone. You feel a little like your just adding to his retirement funds. It’s not easy on the hip pocket.

[Tall_Allen]

I practice mindfulness.

[Aussieguy1 in reply to Tall_Allen]

Hi Tall_Allen. Any good books or online sites I could have a read of to gain more insight into mindfulness.

The anxiety only kicks in when I’m awaiting test results from the urologist. Other times I just get on with life

Thanks for your reply.

[Tall_Allen in reply to Aussieguy1]

There are practice classes everywhere these days. I expect that if you google mindfulness and your local city, you will find one nearby. I found that group practice is a lot better than trying to do it on your own. It took me about 3 months of daily practice for it to become a habit of mind. It's not something that you can learn by reading, you have to practice.

[Aussieguy1 in reply to Tall_Allen]

Thanks.

[marnieg46 in reply to Aussieguy1]

I'm in Australia like you. I've found a book called 'be mindful Simplify your life' quite helpful but it is a bit simplistic. However, if you go to Booktopia they have many titles and they provide a good overview for each book. Their online service is great...very reliable.

In relation to your initial post I think most people feel like you do and it's perfectly normal.

[Aussieguy1 in reply to marnieg46]

Thank you for taking the time to offer this information.

Reading your posts regarding your husband’s journey with this disease I’m overwhelmed that you have taken the time to reach out to me. I wish you both all the best for the future.

I will take a look at Booktopia and also search out ‘Be mindful Simplify your life’. Thanks again.

[marnieg46 in reply to Aussieguy1]

Yes it has been one tricky journey but fortunately my husband has coped very well in spite of all the problems he's experienced along the way. We've had access to good specialists.

You may already know this but there is an excellent cancer centre in Melbourne where a number of trials are currently being conducted. Might be something to keep in mind in case things chance for you.

I do hope things keep going well for you.

[Aussieguy1 in reply to marnieg46]

Thanks. I’ve not long ago taken part in a research project with Navigate, through Peter Mac. It was regarding research into the psychological support required for men diagnosed with low grade localised prostate cancer who choose Active Surveillance. I thought that by becoming involved it may in some way help others with the same diagnosis as myself.

I hope things also keep going well for yourselves.

Take care.

[marnieg46 in reply to Aussieguy1]

That's great. I didn't know about that research as we're much further down the track and I tend to only concentrate on what is relevant for now or the future.

I watch videos from the recent prostrate cancer conference APCCC. The links come in a newsletter UroToday and while many won't be appropriate to your situation they do bring home how advanced we are here with the management of prostrate cancer and how Australia seems to be less constrained by government approvals for drugs than the USA. Peter MacCallum in particular was mentioned in one I watched yesterday.

I haven't followed it up properly but I think PMac might be running a trial using Lu 177 for men with metastatic disease who are not castrate resistant. My husband's specialist put him forward in April for a trial being run at St Vincent's here in Sydney but he didn't qualify as by the time we got there his new PSMA results were back and the bone and lymph node mets were identified so his condition ruled him out of the trial.

I do hope things continue to go well for you. You'll find this site very helpful.

ps....Love Tassie especially the fish and chips at Launceston.

[Aussieguy1 in reply to marnieg46]

I’ve lived in several states, Tassie is pretty nice. Fraggles fish and chips in Launceston are pretty good. Family owned business.

Thanks again for reaching out. You have a great day. Hope the smoke has cleared in Sydney.

[addicted2cycling in reply to Aussieguy1]

Thankfully I didn't need a book or two nor words of wisdom from someone far more intelligent than I to resolve the anxiety issues of life. Truth be told it was staring me in the face much of my first 50 years of life but I just wasn't aware of it until my 50th birthday.

I woke up that Monday morning of July 10, 2000, walked into the bathroom and looked in the mirror and realized that I undoubtedly had lived longer than the time I had left to live AND I would be told I have cancer before I die. Well, I have GL10 PCa but am still alive.

Because I ALWAYS expect the worse, I am either right or pleasantly surprised so there is no anxiety issues.

Had my 3 month PSA draw this past Tuesday 19 years 5 months from my 50th and knew at that time the results would come back elevated compared to 3 months earlier.

YES, it is higher so I simply have to deal with it.

Hope you find your peaceful place making your PCa journey a bit less stressful.

[Aussieguy1 in reply to addicted2cycling]

Thank you. I hope the same for you.

I’ve never been much of a worrier about anything really. You can’t change what will be. Not sure why I can’t relax whilst awaiting the results, they will be what they will be worrying about them won’t change a thing. I’m sure with time I will be less anxious. Early days, I perhaps are more concerned with my choice of active surveillance but that’s only due to my brothers experience. But this journey with prostate cancer is such a variable experience for each one of us.

Enjoy that cycling may you have many more miles to conquer.

[Gemlin_]

Your anxiety is the way your body is alerting you to some sort of fear of the future, as for every human being (to varying degrees). If you are more anxious than others it means that you are better at responding to threats and that you avoid accidents more than people with less anxiety.

The anxiety goes away when you got the test result so I make sure I receive the result as fast as possible.

[Aussieguy1 in reply to Gemlin_]

Thanks Gremlin. Your right the anxiety goes away once results are in. Most times I’m fine.

With a Gleason score of 6 I’m confident in the care of my urologist and ongoing surveillance, my anxiety also involves my brothers journey with this disease as he was diagnosed Gleason 6. Ended up within 2 years requiring a radical prostatectomy with lymph node involvement and pelvic bony Mets. But it’s seems with prostate cancer there are so many different outcomes. My father was diagnosed in his early seventies lived to be 87 dying of lung cancer, heart disease and other chronic conditions.

Thanks for your reply I appreciate it.

[michael42301]

Today is the 8th anniversary of my radical prostatectomy, and I still have anxiety before I have a PSA test done. I thought I'd get over it as time went by, but while it's lessened, it's still there. I agree -- get the results as soon as possible.

[Aussieguy1 in reply to michael42301]

Thanks Michael.

I am in Australia. My urologist gives me the path slip 5/6 months before the tests are due then I see him one week after the tests are performed. It’s that week of waiting that causes the anxiety. If I could get tests results as soon as they are available I would, but the results go to the urologist who informs me of them during my appointment. Are you guys able to get results online or are they rang through to you as soon as available? Not like that here, results go from pathology to your specialist.

Thanks for replying. Good luck with it all.

[Stevecavill in reply to Aussieguy1]

I’m in Australia too. My GP gives me the pathology test form. I get the test at the lab in the same clinic as the GP and results are available next day. I don’t think you need to see the urologist every psa test, only if it rises. That reduced period certainly reduces the anxiety.

[Aussieguy1 in reply to Stevecavill]

Thanks Steve. I’m in Tassie. I was referred to my urologist by my GP and he has taken over my urological care. It all centres around waiting times for appointments with him. He advises me to have the tests a week before my appointment with him. It’s that week of waiting that causes the worry.

I’m due another PSA late February, see him first week of March, then another MRI followed by another biopsy. Each result after testing is sent to him, then appointment, then depending on results we discuss treatment options or continue active surveillance.

I have great faith in him but do worry about results. My brother was diagnosed Gleason 6 active surveillance but required surgery in the end as his PSA increased over time, his second biopsy showed 4 + 3 and histology on removal was Gleason 8. Lymph node involvement and now bony Mets in his pelvis. His having a rough time.

Thanks for your reply.

[michael42301 in reply to Aussieguy1]

My lab results are posted online a couple of days after the test, so I know what they are before I visit the urologist. They have been zero for so long, I don't know what I would do if my PSA showed an increase. I'm at the point that my urologist and I pretty much just shoot the breeze during my office visits. We both enjoy it, and Medicare pays.

[Aussieguy1 in reply to michael42301]

And may they continue to be zero. Thanks for your reply michael42301.

Good to hear you have a good rapport with your urologist, mine is a good guy as well. Bit of a character, explains things well, takes the time to listen and shows empathy. Plus very experienced.

It’s the wait for the results that cause me anxiety plus getting my head around active surveillance. This site has been invaluable in helping me gain knowledge for that. Rest of the time I’m fine.

Thanks again.

[David1958 in reply to michael42301]

Me too! 8 1/2 years since RP. I have been not detectable for all 8 1/2 years that I would be really surprised (and dismayed) if it came back differently. I always call it Christmas each time I get the results twice a year.

[michael42301 in reply to David1958]

I call it the test I love to fail.

[tkalaf]

Hi Aussiegu,

What has helped me with anxiety is knowledge. The more you learn (know) about your situation, the less fear you have of what lies ahead. I have found much on this site for instance, that has help me tremendously. There is much in openly share knowledge and experiences, that can help you to shape your decisions going forward.

As for me, I am 18+ months post RP surgery, and just last week had a PSA test. I have to say I had anxiety, as no one wishes a downturn. Simply have faith in the health team that you've chosen, and especially live the most out of each day! I wish you the best!!

Terry

[Aussieguy1 in reply to tkalaf]

Thanks Terry.

I wish you all the best as well.

I agree knowledge about a situation gives you more control over it.

This site looks invaluable in sharing outcomes and treatments, it helps a lot knowing that people are willing to reach out to each other to offer support.

[jazzy53]

My worst anxiety came during the diagnostic stages (PSA, biopsy, and worst of all, bone scan) when I didn't know what was in store for me. Everything seemed out of my control and I imagined the worst. My primary care doctor prescribed an anti-anxiety drug that enabled me to take a vacation from anxiety some evenings after work. My eventual diagnosis was bad news -- a PSA and Gleason score, both higher than yours, that put me in a high risk category. Despite the bad news, my anxiety lessoned once I was armed with information and knew what treatment was in store. Exercise became my salvation, particularly vigorous, twice-daily walks, a time when I could listen to music and reflect -- or, better yet, not -- on my condition. Exercise also gave me a measure of control: I can't think the tumor away, but at least I can prepare my body for treatment and stay in reasonable shape. I'm far from anxiety free these days and see a therapist to help put my thoughts in order, but I'm far better off than when I had to wait for results through all the diagnostic stages. Work and maintaining my outside interests has been helpful too, as has this wonderful support group. I wish you the best. It's a long journey.

[Aussieguy1 in reply to jazzy53]

Thanks jazzy53

I agree the lead up to the diagnosis was a hard time for me as well.

I wish you all the best for the future.

I also exercise, work and maintain other interests.

I know I am very fortunate compared to others and their journey with this disease.

Thanks for your reply.

[rocket09]

I know live in the moment is a pat answer these days but I have a dog and he does live in the moment. I watch him and he does not worry about things . I learned just to live doing the things I want from day to day as there is always something that will come up that we have to deal with, especially concerning cancer. I appreciate life more and have become thankful for everyday I feel good.

[Aussieguy1 in reply to rocket09]

Hi rocket09

I have a chocolate Labrador his a clown of a dog, loves life, loves me. I can so relate to what you are saying.

Thanks for your reply.

[RonnyBaby]

You wouldn't be human if some anxiety wasn't present when it comes to vacations and PSA counts.

I'm on vacation, hoping that my PSA stays within acceptable (low) ranges. There's nothing I can think of that would prevent some apprehension, but realistically, I'm still standing and fighting back - feeling better than I used to - thinking that perhaps I'm OK because my current numbers are good.

Then I think about all the negativity that goes into all the 'what if' categories and somehow it seems to fade away.

Being a cancer patient / survivor allows us to experience life in a different (more precious ?) way and it would be a shame to wallow in endless pity .....

[Aussieguy1 in reply to RonnyBaby]

Thanks. I agree it would be a shame to wallow in endless pity, there are so many things I love about life and are grateful for. I know the worst time was leading up to the diagnosis, I know this anxiety will be probably present each time I await test results, but I think it will ease with time.

Thanks for your reply.

I wish you all the best.

[SaraCat1]

I've found meditation and exercise to help a lot. Much available on -line. Qi-gong as a form of moving meditation. Qi -gong also offers specific techniques for the prostate.

Walking as an easy exercise is great!

[Aussieguy1 in reply to SaraCat1]

Thank you. To be honest I haven’t heard of that form of meditation I will take a look online. Exercise centred around meditation sounds great. Is it similar to Ti Chi?

Thanks for your reply.

[SaraCat1 in reply to Aussieguy1]

tai chi is derived from Qi Gong.

Google chi gong for prostate cancer.

[Aussieguy1 in reply to SaraCat1]

Thank you.

I will take a little look.

[PatriceKirk]

A good read that may help with anxiety: The Gene Therapy Plan byMitchell Gaynor MD. Taking control of your Genitic destiny and lifestyle. He believes that we can harness the hidden power in foods to change our genetic disposition for disease. Eating clean and healthy.

[Aussieguy1 in reply to PatriceKirk]

Thanks. I don’t eat animal protein other then fish and eggs, follow a diet mostly of fresh fruit and vegetables. Drink plenty of fresh water. I do eat animal products in the way of dairy, cheese, yogurt.

Avoid processed food.

I’ll take a look through google at Mitchell Gaynor MD. Thank you.

[David1958 in reply to Aussieguy1]

You and I eat all the same things! So far, so good.

[Hidden]

Welcome aboard . We have a quite a few Aussie members . Many men use anti-depressants. I use homemade high thc oil . I take 20 mgs melatonin and4.5 naltrexone prior to bed. I have wild dreams but oh well..Exercise does wonders also . I think we all feel high anxiety with testing . Be proactive now and thwart the beast . Don’t let it get advanced. Do things to take your mind off of pc .. stress is not good for us . Very smart asking questions. You will get answers here .. Don’t let this disease define you as a person . You can handle this well . You will deal with it .. Take care .. Scott

[Aussieguy1 in reply to Hidden]

Thanks Scott Yes a fantastic forum full of insightful posts.

A lot of great advice.

[j-o-h-n]

LAUGH MATE.... LAUGH.... Why don't you tell your doctor that you'll buy him a homing pigeon so he can quickly inform you of your tests... If the doc is not a Vegan make sure he doesn't eat it by mistake. You can even name the flying bird "HIGH ANXIETY".....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 12/15/2019 6:30 PM EST

[Aussieguy1]

Thanks John. You have to have a laugh. Never before have so many people showed any interest in my nether regions.

[Hidden in reply to Aussieguy1]

Hahaha! j-o-h-n shows no predjudice .. Humor for all! Take care 🌵

[David1958 in reply to Aussieguy1]

...Never before have so many people showed any interest in my nether regions...so absolutely true! Hell, they have seen parts I have never seen. Since you are under anesthesia during RP, you do not get to see what they see.

[bwhite2026]

What details active surveillance?

[Aussieguy1 in reply to bwhite2026]

My Gleason score is 6. Low grade encapsulated 80% adenocarcinoma in two core samples out of 10. Less in one other core sample. Last PSA 5.4. So my Active Surveillance regime is 6 monthly PSA, 12 monthly MRI and 12 monthly core biopsies via the perinium under general anaesthetic all under the guidance of my urologist. If all stays the same then no further intervention will be required.

Thanks for asking. Also thanks for your reply.

[bwhite2026 in reply to Aussieguy1]

Thanks for your reply. My PSA is 4.7 Gleason 3+3

[Aussieguy1 in reply to bwhite2026]

Active surveillance for you as well?

Hope all goes well. For me receiving the diagnosis was easier then the waiting time for the tests results. Once results were in I knew what I was confronting and could source answers to surrounding the diagnosis.

Take care.

[bwhite2026 in reply to Aussieguy1]

Yes , active surveillance. Was given option cryotherapy. Have you heard anything on this?

[Aussieguy1 in reply to bwhite2026]

Cryotherapy in the treatment of prostate cancer is freezing the area of diseased tissue within the prostate. Sorry someone on this forum could answer this a lot better then myself. I have no idea on the statistics of success of this treatment, recurrence of disease etc. Anyone reading this with anymore information, or who has had cryotherapy for prostate cancer can you please offer your insight it would be much appreciated.

[Hidden]

I don't know how anyone could not be a bit apprehensive waiting for their next PSA reading. I know I am and I've been in this game three years. The good news is that you are on top of things. Too many men don't find out they even have a problem until they are grossly and painfully metastatic, so look on the bright side.

[Aussieguy1 in reply to Hidden]

Thanks. Yes I’m fortunate that I am being monitored and it is low grade encapsulated. The waiting for results I’ll have to get used to it’s a part of the active surveillance journey. I realise their are many in a less fortunate position then I.

[Northcaptain]

A decision I’ve taken prior to surgery is to opt for a private laboratory equipped with the latest array testing for PSA that yield a 2 digits after the dot as significative numbers. I pay 65$ CAD per test and have the result emailed to me within 22 hours. So far 0.10 after RARP February 2019. I would be very anxious to wait weeks to get the results especially since if I opt for the public (insured service) I wouldn’t have the results first hand.