I know we have talked about this subject before. I am an Australian and I appreciate this forum’s advice. I was told I was metastatic in October 2021. I had a PSMA pet scan which pointed out I had a infected Lymph node just outside my Prostate bed area. I started Lucian (spelt differently in Australia). I have been told I have done well. My latest PSA is .006. My MO told me when I started hormone treatment that he couldn’t save me because I was now metastatic. I was told I had low volume cancer. I remember being told earlier that once I became metastatic I had between 5 to 10 years left. I have Spence found out from this forum that one is lucky to get to 5 years. I had a stroke on the 23 March this year. After being told by the stroke Doctor Specialist that my cancer wasn’t good: in terms of years I have left (he told me he had to find out what caused my stroke)He has told me yet) After this discussion I got very anxious about my situation. I am finding it very hard to get to sleep and my day is messed up. I have asked my GP for help to get to sleep and he has given me a script for melatonin. I hope I can find a better way to handle my on upcoming demise. Any thoughts/help please.
Life left to live?: I know we have... - Advanced Prostate...
Life left to live?
It's great that you had a 68Ga-PSMA-11 PET scan to identify your adv cancer locations. It found them. Now maybe you can obtain treatment to address them. You started Lucian( is that Lupron Depot hormone equivalent?) That's a good start.
I wish you well with your post stroke recovery. Seems like your stoke doctors assessment of cancer is kind of harsh. Would you consider consulting with another stroke or cardiologist physician? In any case Burnett1948 you do have many choices for treatment. Radiation, start chemo medications like Zytiga(Abiraterone) and continue on ADT.
I too have anxiety skyrocketing issues with my PCa adv w/mets and cardiac issues. That's a though problem to tackle, Anxiety. I do a lot of exercising that helps me relax, really it does.
Plus my GP doctor prescribes Buspirone 10mg three times daily. It isn't working well.
Wish you well in your journey with us Adv PCa guys.
Oh, my newest Electrophysiologist Nurse practioner is from Austrailia. Matt is his name.
I've got many heart arrhythmia issues I'm addressing and continuing to take care of.
Doug
Buspar takes 6 weeks to start to work. It's used for general anxiety. It's non addictive.
Yes I know it is an anti-anxiety med, but it is not working well. I’ve been taking 7.5mg 3x/day for 6yrs! And just started 10mg 3x/day a lobth ago.It does nothing for my anxiety issues…
Exercising and listening to certain music does. Time to change meds?
Doug
Other alternatives are habituating. Drugs like Klonopin . There's a herbal called Stephania extract that has anti anxiety potential without getting you hooked on anything. I'm not giving u medical advice, however.
First, don't let anyone tell you how much time you have. I was told I had 5-10 years. That was 30 years ago.
So far as the cancer goes you're doing great. Take care of stroke business.
Burnett1948 Thanks for your advice.
There are many things doctors don't know about cancer, including how it will progress in each. patient. There are members here living with the disease for decades.
The response you have had so far shows the cancer isn't resistant to hormone therapy. That is a very good thing. The cancer can stay that way for a long time.
I've found it helpful to talk with a counselor that has experience with cancer. She has helped me find peace. I would suggest you ask your doctor to recommend someone.
Get support from friends and family., and keep posting here. We all share the struggles and the journey.
Can you get second (third) opinions? Also, talk to your GP about an anti-depressant. Even a low dose could do wonders for you. It's far too soon to give up. Very best of luck.
Live life evry day....do the bucket list thing...you have stage 4 adv pc...anxiety comes with it.....tell you doc ....melatonin aint gonna cut it...break out the good stuff.....5/ 10 mg diazapam.....works wonders....
I agree with what a lot of people here are saying. Since reading the whole “3-5” online I was such a mess about my dad. But since then I have read a lot of stories with many more years. There is no telling. And the advances in treatment are a variable that makes it even harder to know. Get a second opinion, a 3rd, do research.
Live like you’re dying though. Do everything on your bucket list. And therapy can be really helpful if you find the right therapist. Someone here mentioned supplements like 5htp and I agree, though I’m more a fan of St. John’s wort, you have to check with your MO because many of these things interact poorly with cancer meds.
Also zero cancer has a program where you can be matched to a peer (someone going through exactly what you are) who you can talk to.
Don’t ever give up, I’m sorry you’re dealing with all this.
Read this:
menshealth.com/health/a2530...
Todd is still doing fine and sometimes posts here.
This article is great!
Hey, you are all doom and gloom way to soon. We all got anxious when diagnosed, but with treatment many with a LOT worse starting pt. than you are still here and doing relatively well and having a good life... With some ADT and later a novel additional drug you have many years ahead of you before you need to worry to much... Life Is Good and you have a lot of it ahead of you.....
I was diagnosed with metastatic cancer in about 10 lymph nodes in the pelvic and abdomen in November 2018. My cancer was initially diagnosed low volume Gleason 3 + 3 in 2011. There are men who had lived 20 years or more with more extensive metastasis than yours.
Don't worry you many more years to live. It may be time to look for another MO.
I was thinking the same, you can’t feel safe with an MO that’s already given up, do some research and find a new one 👍
Definitely hang in there…our initial diagnoses scare the heck out of us all. We second guess everything, we get terribly depressed/scared (of the unknown, which is hard to come to grips with often)…but we have our Medical Oncologists or Urologists who are watching out for us. I was diagnosed in 2007 with a Gleason 9 PCa that had gone haywire - in February I had a PSA of 4.5; by May, a 5.3; in July, a 6.9, “but it is contained”…upon removal via an open radical prostatectomy, it had escaped the capsule, was in the surrounding muscle wall, going up the neck of the bladder, was in the seminal vesicles…so I was an Advanced PCa patient out of the gate - at age 51. Well, the nomographs gave me 5 years max. I’m 66 now, still functioning for the most part, and after 15+ years I’m not planning on going anywhere soon. With all the options we have now, men live longer and longer following diagnosis…I am castrate resistant now, but that determination happened last year, so I made it 14 years on intermittent ADT (Eligard for me rather than Lupron, but it’s the same med, just a different delivery system)…Treat your stroke issues, and get that under control…your PCa will certainly be ok for some time to come!
Why hasn't anyone put you on doxetaxal? I suggest you change all naysayers. You only need positivity. I'm Australian. Pet scans showed innumeral metastases. I had doxetaxal, and now on Zytiga, and Zoladex. My psa is now undetectable. Have had useless radiation as well.
Many here in the,US have been anxiously waiting to be treated with L,U177, which was recently FDA approved. There have been numerous patients who traveled to Australia to get this readily available treatment Is this an option for you?
I think I’m too early for it. I have been to the Wesley Hospital in Brisbane for Pet scans and sat in the place where Lu-177 was being marketed. I would also need it to be subsidized.
I am in a similar situation to you and take three melatonin each night and I am scared of getting a stroke and sometimes take Cartia. I also find this site very useful.
I was very lucky my wife saw that I became unresponsive to her questions so she called the Paramedics and they got me to the Sunshine Coast University Hospital who have a Stroke Ward within 4 hours so I could receive Clot Busting Medication to break up the stroke. It took about 3 days to get my words back. This medication is new. Without it I could have been subject to serious side affects. I had no warning and couldn’t help myself.
Thanks everyone for your advice. It have relieved my worry and given me new information to help me on my cancer journey.
I am also in Australia with G68PMSAPet showing lymph nodes involved so had EBRT to LN and ADT Zoladex.
I find it ridiculous that your stroke doctor gave you an opinion about your cancer. That is not his field. Listen to what your oncologist says. The stroke is not necessarily connected to the cancer.
I have (had) 'regional' spread into the lymph nodes - those in the pelvic and thorso areas,My original state was N1 - meaning node positive at diagnosis. I was MORE advanced than you are.
I have responded well to treatment - RADITION + ADT. It has been 5 years since it became apparent that something was very wrong with me. My most recent scans show a significant REDUCTION in signs of cancer - everywhere. That has been happening for over a year of ongoing monitoring. I'm part of TWO clinical trials - so they watch me closely and schedule scans at least every 6 months - but most recently they have been every 3 months. I already had the PSMA/PET scan done nearly 2 years ago - when my PSA was around '12.0.
Today I am undetectable (0.03 ) and have been for at least 6 months. It appears that I will stay 'lo' for awhile yet and I'm feeling pretty good and optimistic. Note that I had a BCR (recurrence) 2 years ago - and became undetectable for a second time after treatment.
So your metastasis (to a lymph node) is NOT generalized throughout your system - there's a big difference. CTCs (circulating 'tumor' cells) are noted in many individuals (including me) as a result of extensive testing, but that is not a guarantee that it's game over - many survive beyond 'expectations'.
I got the impression that your 'cancer' team is jumping to conclusions that can't be fully justified. Your 'stroke' is an added consideration - I don't know how the 'two' distinct medical teams would interact - that is something that needs to be better understood / prepared for.
Don't allow 'timeline predictions' rule your roost - I expect to be around for many years to come - that's what they are telling me - comparisons of individual cases can't be predictions of things to come.
Cancer is basically unique / individual when directly compared to another - there are many variables.
Wishing you the best on your journey ......
Thanks, Nalakrats, for a great post. An excellent, concise description of Adaptive Theory, and tailored to the specifics of Burnett's case.
You said that you had just one positive lymph node “outside the prostate”. Well if that node is located within the pelvis, then you are not actually metastatic yet and could possibly be cured with salvage radiation (SRT) that includes the pelvic lymph node fields. In addition to some fine suggestions given above, I would suggest an appointment with a Radiation Oncologist, RO. They will review your PSMA scan and advise you on possible salvage treatment to the pelvis.
For what it's worth, I am another fortunate patient who is approaching 10 years from dx because of Lupron and Zytiga. I was dx with 4 bone mets and 1 lymph node. Wishing you the best.
I was born in 58 had a gleason 8 four years ago. I had radiation and brachy therapy. a year later it migrated to my L 3 and pelvis. Here I am in 2022 still feeling fine less the side effects of Orgovyx and Erleada. Every situation is different. Take it a day at a time. If there is a good thing about cancer, you wake up very grateful for another day
Well as every red blooded Aussie would say to his doctors "fook off mate". No one knows how long they will hang around and be a nuisance to all the people they know. Quoting from the 11th commandment "it is what it is".
So take your dearest one (wife, girlfriend or both) on a nice vacation to Alice Springs, (remember the bed roll for three) and enjoy the fresh air.
As far as your stroke is concerned I believe it is not related to your Pca but to all those young chippies you're been eyeing. So remember have some goon and live it UP...... Your friend and tour guide.........Bless you all.....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 04/27/2022 7:41 PM DST
I'm not sure how serious your anxiety is, and I'm not a doctor, but I had a serious anxiety issue about 3 years ago, before I developed prostate cancer, and fluoxetine (generic Prozac) worked wonders for me.
Nalakrats, I am with Boomster… you are amazing! I try to read all of your posts… Thank you for your knowledge and sensitivity❤️
Burnett1948 Thank you Nalakats
Everyone has their own ideas on how to deal with anxiety. At times I have been known to belt back a little 😉 rye whiskey. However, as a long term strategy I meditate, and use a lot of techniques from cognitive behavioral therapy . One process that works well for me is called "Dropping Anchor" from Acceptance and Commitment Therapy. Here's a link if you are interested actmindfully.com.au/free-st.... I prefer the 7 minute version.
All the best, and I expect to see posts from you for a long time.
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