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Stage 4 Prostate decisions

Stage 4 Prostate decisions

Posted by Johnny3 on Dec 15, 2019 12:20 pm

I was diagnosed the day after I paid my respects to fallen veterans, not knowing my Dr would tell me the next day I might see several more Nov 11 th ceremonies 
but that would be it.  I opted for removal of testosterone source operation rather than stay on Lupron drug for the rest of my shortened life.  Once healed I start cancer pill, steroids and bone rebuilding injections.  1 year or 1 1/2 when that stops working we go for chemotherapy for a break then another cancer treatment.  Looking at hopefully 3 to 5 years before I loose this battle
 

Re: Stage 4 Prostate decisions

Posted by Mammabear on Dec 16, 2019 11:52 am

I am stage 4 breast (in active chemo therapy right now) and I have a stage 4 prostate cancer friend. He is also doing the hormone injections (which he says are brutal) and added 30 days of radiation. He finishes up the radiation this Friday and then gets a well deserved break. Stage 4 is like a chronic illness where we keep living our life and doing treatment until the treatment stops working and then hopefully they will have something new to try. It is hard knowing what will kill you eventually (unless I get hit by a bus on a dark and rainy Vancouver winter day) and people look at you and they don't know cancer is trying to kill you every day. I hope the side effects are manageable and you can enjoy life somewhat and the good days out weigh the bad. The holidays are here so hang with family and friends, laugh and love. Best of luck. 🎄

Re: Stage 4 Prostate decisions

Posted by Lacey_adminCCS on Dec 16, 2019 12:21 pm

Johnny3‍ 

Welcome to our community. I'm sorry to hear about your recent diagnosis. You have come to the right place to connect with others who understand. 

I would like to introduce you to edap‍, MrFido‍, WesT‍, Jackwb‍, Charles‍ who have experience with prostate cancer.

Prostate Cancer Canada has a great website I found this page you might find helpful: Advanced Prostate Cancer . I hope your treatment is successful at stabilizing your cancer for as long as possible.

Wishing you well,
Lacey

Re: Stage 4 Prostate decisions

Posted by Wendy Tea on Dec 16, 2019 12:28 pm

Johnny3‍ , I am sorry you find yourself here but there are some wonderful friends here who can help you through this journey. Remember, as great as our doctors are, they can never factor in our will to live, when they pronounce a time frame for the progression of this nasty disease. Focus on your health by eating right, exercising, keep your mind sharp and your friends and family close. Those 4 things are just as potent as the treatment you will receive from your medical team.
Wishing you all the best.
Wendy Tea
I am a survivor. Wendy Tea

Re: Stage 4 Prostate decisions

Posted by Wendy Tea on Dec 16, 2019 12:31 pm

Mammabear‍ , Dark rainy Vancouver nights? How about ducky days in a soggy GVRD?  I am hibernating today and hope the rain ends soon.

Best wishes,
Wendy Tea
I am a survivor. Wendy Tea

Re: Stage 4 Prostate decisions

Posted by WesT on Dec 16, 2019 1:33 pm

Wow Johnny3‍ sorry to hear that.  I was fortunate and was diagnosed with Stage 2 (turned out to be early Stage 3) and having my prostate and some of the surrounding tissue removed "cured" me.

There are a number of resources that will help you make the right decisions for you, including the link Lacey_adminCCS‍ posted, but your "team" should be making the recommendations based on your specific case.  You haven't stated where abouts you are located and if you are not near a larger population centre your options may be somewhat limited.  Still ask your team any specific questions regarding your options and the specifics of each proposed treatment path.  Read as much as you can so you are informed.  When I was going through my treatment I compiled a list of resources that you may find useful.  This is far from being a complete list but may help you education yourself some.

https://cancerconnection.ca/discussions/viewtopic/73/59292

If you have any questions or need someone to talk to, reach out to us here.  If we can't help hopefully we can point you to someone who can.

Good luck and keep us informed of your progress and treatment!

Re: Stage 4 Prostate decisions

Posted by Cynthia Mac on Dec 17, 2019 10:32 am

Johnny3‍ , I like your user name because it reminds me of Johnny Number 5 from Short Circuit - great little movie

I looked at your post from a different viewpoint: my Dad had prostate cancer in 2002, and he had to go back in 2006 to have the radiation and hormone treatments. As a daughter, I’m grateful that he persevered - I know the injections in particular were hard on him, but his perseverance meant that he stayed around for these intervening years.

Your journey is different than his in that you have chemotherapy to deal with after, and that’s actually why I’m here on the site - Dad’s prostate issues were resolved, but he developed lung cancer in 2017, and he is in chemo and immunotherapy for that now. He has handled the chemotherapy well, but I am beginning to see days when it wears on him, and, again, as a daughter, knowing his cancer has metastasized, I have to face the reality of losing him. But, I am so grateful that I didn’t lose him 10-13 years ago.

Everyone’s cancer journey is different, and everyone’s treatment plan is too. As Mammabear‍ Said, it’s a matter of weighing the quality of our days, the good and the bad, and choosing what is right for you.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Stage 4 Prostate decisions

Posted by Johnny3 on Dec 18, 2019 7:21 pm

Thank you so much for your kindly reply.  My nickname Johnny3 comes from the military days, I lost my baby finger on my left hand and the name Johnny3 (fingers) just stuck.  I have my head half wrapped around this situation I now find myself in but it is my wife and friend of 38 years that worries me the most. How can I leave her at such an age, her retirement this spring, our motorhome has replaced our house and we havei  just renovated the cottage on tthe he beautiful Miramichi River in North Eastern New Brunswick near the city of Miramichi. We both served 20 years in th military and have lived in Toronto, Vancouver, Halifax, Moncton, Fredericton to name a few. I served 2 tours in the Middle East and was looking so forward to traveling from winery to winery all over this great country and the US.  I guess I am just mad now not afraid of the future.  Your connection and the rest of this group is really helping me cope.  Johnny3 OUT.

Re: Stage 4 Prostate decisions

Posted by Wendy Tea on Dec 19, 2019 1:22 am

Johnny3‍ , well, as an airforce brat I understand your dilemma.  The logistics of diagnosis,  treatment,  recovery and at the same time dealing with and concern for your wife, must scare the heck out of you. My friends are scattered all across the country.  Your wife is stronger than you think. She can manage but tell her how to help. Do what you can to make sure she has the tools in place to give you the care you will need.

I won't hold it against you that you seem to have settled on the wrong coast! 

Best wishes 
Wendy Tea 
I am a survivor. Wendy Tea

Re: Stage 4 Prostate decisions

Posted by Lacey_adminCCS on Dec 19, 2019 9:47 am

Johnny3‍ 

Thank you for your service. It's always nice to get to know people a little better. You are so much more than your cancer diagnosis.

Many people share that cancer teaches them to seize the day and do all the things they dreamed of sooner rather than later. I hope it is possible for you to start to focus on the things you and your wife really enjoy. There is no time like the present and the future is not certain for anyone. It's okay to be angry it's part of the grieving process. It's okay to grieve the future you wanted without a cancer diagnosis.

There are treatment options available to you now and advances are being made all the time. When is your operation?

I think you may find this booklet to be a good read for you and your wife: Advanced Cancer. It talks about common reactions to an advanced diagnosis, moving forward, and it has a section for caregivers. 

We are here to listen, and walk beside you.

Lacey



 

Re: Stage 4 Prostate decisions

Posted by Her2 on Dec 20, 2019 5:23 pm

Lacy, I am not responding to this particular post.  I was trying to respond to the next one that appeared on the site for Dec 20, that is trying to sell drugs.  Couldn't figure out how to contact you to say that the post seems totally inappropriate on this site. Am also worried about Life Lab data compromises mentioned in the post.  Is the system Canadian Cancer has, hacked?
 

Re: Stage 4 Prostate decisions

Posted by Cynthia Mac on Dec 21, 2019 9:30 am

Her2‍ - thanks for your interest in keeping spam off the site. Occasionally we get these - there haven’t been many in the last six months or so.

There is a way to report them: when you’re in the message, if you scroll to the bottom of the post, you’ll see  the word “Report” in grey, on the bottom left of the box around the post. When you click on that, a little box pops up, and you can just write “Spam” or “offensive content” in it and submit it.

You really don’t have to worry about it though, as chances are another member already has reported it - for a while there, we were getting so many, I was reading through the discussions before going to bed, so they’d get reported before they found their way into the Daily Digests! 

This doesn’t mean that the Cancer Connection site has been hacked. I think it just means that someone has set up an account, and started putting up posts in various locations in the site in the hope of commercial gain.

Regarding the Life Labs issue, that was a security breach on their company’s server, where hackers got into the company’s actual servers and took information. This has been happening a LOT lately, with many companies and municipalities, and often times the hackers are demanding money, or ransom for the return of the data.

I apologize for this post straying from the original topic, however, I want to be sure you see the response, and I also know it may be of interest to other people who have commented in this discussion thread.

Lacey_adminCCS‍ And Lianne_adminCCS‍, please chime in if you have anything to add! 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Stage 4 Prostate decisions

Posted by Charles on Dec 21, 2019 3:13 pm

It sounds like you've opted for an orchiectomy, rather than taking anti-hormone drugs like Lupron.

That sounds like a reasonable choice, but you might still experience "ADT withdrawal" symptoms.

There's a useful book for those problems:

. . .    "Androgen Deprivation Therapy: An Essential Guide . . . "  -- by Richard Wassersug (and others).

It's available through Amazon.ca, and at some doctors' offices, and at libraries.

There's an online support-and-education course you might look at:

LifeOnADT.com

You have my best wishes for this Christmas, and the many more to come --

.     Charles

PS -- a family "call-out", asking them to check their PSA's -- that was a very good thing!

 

Re: Stage 4 Prostate decisions

Posted by Lacey_adminCCS on Dec 21, 2019 3:54 pm

Her2

The Canadian Cancer Society has not had any technical issues or security breaches. 

Some spam is expected on online platforms, all is well. No security breach or 'hacking'. 

We appreciate members reporting spam to us. So we can remove it. 

If you have any questions or concerns please let me know.
Lacey




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