Positive mind and advanced prostate c... - Advanced Prostate...

Advanced Prostate Cancer
8,966 members10,145 posts

Positive mind and advanced prostate cancer

joancarles
joancarles
33 Replies

I am 51 years old and 6 months ago I was diagnosed with prostate cancer with bone metastasis. I have several points of metastasis in my skeleton. The truth is, the treatment of ADT + Abiraterone is working well. I have no pain, I have taken weight and my PSA has dropped from 1350, at the time of diagnosis, to 0.2 in the last revision. My oncologist tells me that everything is going very well. But I only have the disease in my head, look at statistics and information. I need to focus on other issues, but I can not.

How are you doing to focus on positive aspects and stop thinking about the disease?

33 Replies
oldestnewest
pjoshea13

Time helped me, but it took a couple of years.

The worst thoughts for me were 3 am thoughts. I dealt with that by making some coffee & doing an "Absolutely Nasty Kakuro Level Three" puzzle [1]. Quickly drives out all other thoughts.

Oddly, digging into PCa research on PubMed was relaxing, somehow. & the disease became less intimidating.

The trick is to inhibit idle thoughts via distractions.

-Patrick

[1] amazon.com/Absolutely-Nasty®-Kakuro-Level-Three/dp/1402799918/ref=sr_1_4?s=books&ie=UTF8&qid=1518706427&sr=1-4&keywords=kakuro

5 likes
Reply
joancarles

Thanks Pjoshea13

Reply
spinosa

I think I know what you mean... no matter what, "it" is always "there." Living in the moment is difficult, but is the answer, I think - stay busy.

1 like
Reply
joancarles
joancarles
in reply to spinosa

Thanks Spinosa

1 like
Reply
Dayatatime

Great question and hope there are some good answers. It is consuming, seems every decision from food to what I involve myself in leaves me asking what is best. Every 3rd month when it is time for a PSA test the anxiety level starts to climb. Hot flashes and the effects of HT and scars we bear from treatment will not let us forget what we are living.

My separation comes when doing things I love. I find when fishing and hunting there are moments of peace I cannot get anywhere else. Especially early in the morning. Seems when the world is waking up and in that setting I find the most pleasant.

Time with my daughters and participating in what they are passionate about is huge. I love seeing them happy and it makes me happy seeing that. I have learned to appreciate so much more.

Try to focus on things you love and are passionate about and move on them. By doing that you are pushing back and defying cancer and keeping what it is trying to take.

Ron

2 likes
Reply
joancarles

thanks Dayatatime.

Reply
ottawamike

When you posted this you were only 6 months into this, so it’s very natural to be thinking about it all the time in the beginning. I certainly did. I hope you’re feeling better and your treatments continue to work well.

I used to worry about how it affected my love ones because I talked about it in every conversation with them. It was draining for those around me. But it’s a dangerous disease and a challenge to live with.

I echo those who say try to do the things you love. I took up watercolour painting. I stumbled across some great videos on YouTube that recaptured my interest in art. I haven’t tried to do anything artistic since middle school.

I’m really struggling with the fogginess that comes with ADT. So a lot of activities that used to be a normal part of my life—things that required mental focus— are difficult. I found however, that I can paint for hours. It’s very rewarding for me because it uses my hands, and makes me feel like my brain still functions.

More importantly, it helped me break the cycle of always thinking about this disease inside of me. At first it gave me an hour or so of relief from thinking about cancer. That turned into two and for hours of relief. Now I’m painting almost every day, thinking about how to improve skill wise, taking pride when I pull off a successful sketch. Eventually I have been able to go days without obsessing about the disease

Now I’m wearing my friends down with always talking about painting.

So my advice is to not beat yourself up about it always being in your mind in the beginning. And try to spend time doing things you love. Maybe try different activities that are fun and use your hands

I myself was diagnosed 10 months ago and the for first 5 or six months it was always on my mind. I feel more balanced and positive now (with lots of sad and worried episodes but those are briefer than before)

M

Reply
Hidden
Hidden

I look for information and clinical studies. I already participate in 3 clinical studies, one of them stopped the cancer for 6 years, the other (Lu 177 treatment kill all the metastasis)

If I start thinking about the cancer and regular treatment, a treatment that eventually will fail, I become depressed, so I fight in this way.

It is working so far. I was diagnosed in 2002, with PSA 6.5 and cancer extended to the pelvis. In August 2016 PSA was 10 and had multitude of metastasis in pelvis and abdomen. Now PSA 0.09 no metastasis after treatment with Lu 177 and lupron.

Keep the fight, get informed, take the wheel of your treatment.

Best wishes

Raul

4 likes
Reply
joancarles
joancarles
in reply to Hidden

Thanks Raul80

Reply
abmicro

Attitude AND environment plays a small role in my opinion. I moved from a horrible rat hole of an apartment in Los Angeles to a nice clean home in Sacramento. Immediately, my PSA dropped significantly for no reason at all. I was on maintenance meds for prostate cancer at the time, and I did not change anything except my environment and my life style. Doctors have no explanation. Have to attribute it to environment and life style--more positive attitude, more active life, clean air, clean water, no freeways nearby to pollute the air I breath all the time.

Gardening takes my mind off things. I put up a white picket fence, roses and Chilean Jasmine. We go dancing sometimes on Saturday Nights, and that keeps me from having negative thoughts.

2 likes
Reply
joancarles
joancarles
in reply to abmicro

Very thanks abmicro

Reply
ctarleton
ctarleton
in reply to abmicro

abmicro, If you are in the Sacramento area, and if you don't already know about it, the next meeting of the Sacramento UsToo Prostate Cancer Support group will be on the third Thursday, March 15, 2018

from 1:30 - 3:30 PM

at the Mercy Physician’s Plaza Bldg. (Mercy San Juan), 6555 Coyle Ave. Rm. 150,

Carmichael, 95608.

Park free in the parking structure behind the building. Then, go in the far-right door in the back of the building.

On alternate months, the same group meets at the Auditorium of the UCDavis Cancer Center on X Street in Sacramento, on the third Thursday at the same time.

I'm usually there. Sometimes gregg57 is there, too. If you have a caregiver/"sweetie", bring that person, too. Stir some things up a bit. Maybe teach us to dance with a rose between our teeth. We need all the help we can get! Ha. Ha. Ha. Ha. Ha.

Charles

Reply
abmicro
abmicro
in reply to ctarleton

Can go April 19. Which room number at UC Davis Sacramento on x-street?

Reply
ctarleton
ctarleton
in reply to abmicro

Directions: From Stockton Blvd., turn at the traffic light on to X Street. Go 1 and 1/2 block to the traffic light at 45th St. and turn left. Enter the parking area next to the huge water tank. Take a parking ticket, and keep it with you to get a validation stamp during the meeting. The Cancer Center Auditorium is on the far-right southwest side of the Cancer Center entrance in the second building across from parking lot.

google.com/maps/@38.5539126...

Reply
Dan59

Time does help after a while, I think it is important to rejoice in good news such as where you are now, for me, I have way to much time into worry over the years , that could have been better spent enjoying life with loved ones, and getting on with the things you did before cancer is big.

Patricks post was excellent, It seems he emerged himself in research on the disease, So I say learn all you can here and online about APC. Knowledge is power. I was told early on when I had fears “ If a person is worried about dying all the time, They can no longer live life. Dayatatime had some great sage advice also IMO, wish you the best. we are all here for you.

Dan. Dx 2006 , stage 4 ,extensive bone mets on skeleton to distant sites and Lymph

Reply
joancarles
joancarles
in reply to Dan59

very thanks Dan59

2 likes
Reply
Rogersw

I agree with a lot of above Time Acceptance (whilst doing all you can with diet and exercise ) and enjoying life (yours and those around you) to best of your ability and pray now and again.

Reply
joancarles
joancarles
in reply to Rogersw

I appreciate your advice very much. I hope you have good luck.

I hope to make the most of this fantastic forum

Reply
MartinSpurs

A bit over 2 years since I had a pretty grim dignosis. I buried myself in research which really helped. I felt more in control. My wife and I have continuosly set a travel goal 3 months out and have really enjoyed these experiences and have always had something to look forward to. The fact is we are all only here for a short time, I enjoy black humor and smile at the thought of that proverbial bus taking me out and robbing the big C of its victory 😀

Good luck with the battle, there are plenty of highs and lows to come. Enjoy as much as you can the experience, I'm sure there are many great times to come over the next year or two and more!

1 like
Reply
joancarles

I appreciate your advice very much. I hope you have good luck.

I hope to make the most of this fantastic forum

Reply
EdBar

I was 55 when I was diagnosed 4 years ago with multiple mets to bones and nodes. I’ve found that my faith has grown stronger and Christ has helped me through some difficult treatments, and I find myself in a good spot today in regards to my disease. I retired, and spend my time doing things I enjoy and try not to waste each precious day worrying and stay away from negative thoughts. I fish every chance I can and spend time at the beach whenever possible.

I see the stats regarding my diagnosis but feel that I’m gonna be on the far side of the median and gonna be an outlier. I enjoy time with my wife and family, take it a day at at time and found that life has taken on a new meaning. I’ve found a new freedom and happiness. And keep hoping for “one more cast”...

Ed

1 like
Reply
joancarles
joancarles
in reply to EdBar

I appreciate your advice very much. I hope you have good luck.

I hope to make the most of this fantastic forum

Reply
Chuckujo

It gets easier with time. I was diagnosed 2 1/2 years ago and have done chemo, Provenge, + ADT. I am on ADT and Abby plus xgevia to maintain bone health. I feel fine except for the fatigue, loss of muscle mass, but then I am 68. I have still have thoughts of my mortality, especially when I get aches and pains. I also have arthritis which is occasionally affected by weather changes. I never know if it is weather or the cancer. After 2 1/2 years I pretty much chalk it to arthritis but there is still the wonder in the back of my mind. Enjoy each day.

Reply
joancarles
joancarles
in reply to Chuckujo

I appreciate your advice very much. I hope you have good luck.

I hope to make the most of this fantastic forum

Reply
snoraste

Joancarles -

I was also diagnosed last October w/stage 4 at age 52. And I have been going thru the same emotional and treatment path as you. I read thru the advice here and they are good and practical.

Even with the best of advice, it just takes time to mentally adjust to the new reality. I can already tell you that I feel more at ease than I did just a few months ago. Some of the steps that's been helping me:

- Don't feel embarrassed to seek help: I spoke to a therapist with my wife. His suggestion to verbalize my thoughts and fears, and not internalize them helps. I've been keeping a diary, and I speak to my wife and friends about my thoughts and anxieties. I recommend you pick up a book there.

- Exercise: I cannot emphasize enough how valuable it has been in my mental health. You should do as much as you body tolerates, and your schedule permits.

- Distractions: You need to keep busy. This is where your personal interests and hobbies come into play. Working, socializing with friends, running errands, reading your favorite magazine, surfing the web, ...

- "Meditation" in whichever form is consistent with your ideology. I use Headspace and I'm very happy with it.

-Diet: This was a surprise to me. I always ate healthy, but when I switched to Vegan+Fish diet it actually enhanced my energy and focus, and made the days brighter.

And last, but not the least, realize that the diagnosis is NOT a death sentence. The survival statistics are outdated, and new and improved treatments are coming out at an accelerating pace. You are already on the right tail of the survival curve that itself is shifting to the right.

Reply
joancarles
joancarles
in reply to snoraste

I appreciate your advice very much. I hope you have good luck.

I hope to make the most of this fantastic forum

Reply
snoraste
snoraste
in reply to joancarles

This forum has been very valuable to me. I'm sure you will find it the same.

Reply
Todd1963

I use to be involved with church. I was one of those 3-5 nights a week church goers before I got divorced and became a sinner.

I was diagnosed stage 4 as well. Original prognosis 1 year. Psa 3200+ mets in lungs bones and lymph nodes.

It is funny how people face terminal illness in their own way. I sought peace in scripture. Didn’t know what to read so I just opened the book and pointed with my finger and read 2 verses.

Bless the Lord, oh my soul bless His name. He who forgives my sin and heals my body of all its diseases.

I use to

Meditate on that as I would fall asleep. I also take

A couple of Benadryl to help me sleep each night. Like you, I have a hard time shutting off my brain. I have been successful. It has been 12 years. I am currently undetectable. I have been on Zytiga for 54 months. Lupron for 12 years. I also encourage you to seek out Provenge when you become hormone refractory.

Hang in there man. It’s a rough ride but in many ways this disease has been the best thing to ever happen to me. Sounds weird I know but I am a better man because of it. Oh by the way, I was 42 at DX. I turned 54 a couple months ago. There is Hope!!!!

2 likes
Reply
joancarles
joancarles
in reply to Todd1963

Great advice. A good story .Good luck

Reply
j-o-h-n

WITH SEX....

(Mind not body) Laughter, Laughter and Silliness (which is my hobby). Just laugh your ass off.

Good Luck and Good Health.

j-o-h-n Saturday 02/17/2018 12:47 PM EST

2 likes
Reply
paulofaus

Working full-time for me gives me a distraction and a reason to get up in the morning. The first year was very hard, but the second year was much easier and I can sometimes go a whole day without thinking about prostate cancer too much. I try to spend my time living rather than dying. I think I'm doing the best that I can do and energy used on worry is wasted energy. Having said that, I do have times when it gets very hard to stay optimistic. I tend to go into my cave, but I always emerge after a few days. Good luck and keep fighting.

Reply
joancarles

Thanks paulofaus!!!

Reply
Lulu700
Lulu700
in reply to joancarles

Watch comedy , listen to great music , kiss the one you love and don’t stop living for APC. ..

1 like
Reply

You may also like...