How bad is my dad’s condition? - Advanced Prostate...

Advanced Prostate Cancer

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How bad is my dad’s condition?

Lilith_lilith profile image
25 Replies

This is my dad’s PSMA result:

CONCLUSION:

• Metastatic left supraclavicular, retroperitoneal and pelvic adenopathies • Multifocal osseous metastases in axial skeleton with increased gallium PSMA uptake • Increased gallium PSMA uptake in prostate bed and seminal vesicles in favor of tumor residue or recurrence

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Lilith_lilith profile image
Lilith_lilith
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25 Replies
Jbooml profile image
Jbooml

PC is pernicious...can sneak up with little or no warning.

A lot of us end up like him....what’s important is how well he responds to treatment...what is he opting for.

Tall_Allen profile image
Tall_Allen

What's the plan?

dadzone43 profile image
dadzone43

You dad has metastatic prostate cancer. There are multiple choices for teatment and he can expect the reatmenr to be effecrive. Doing nothing is not an option. Surgery is not an option. He will need to talk to at leasrttwo urologic oncologists, consider their _opinions_ , review _thoroughly_ the side effects of eachtreatment then make a choice. This is not an emergency and he has many weeks to use for thoughtful consideration. Radiation? Hormone deprivation? Chemotherapy? Methodical thinking, not panicked decisions, is the watchword. The only "bad" decision is to ignore it or to remain ignorant of the treatments. Depending on you father's age, the odds higly gavor him dying of something else than PCa.

Lilith_lilith profile image
Lilith_lilith in reply to dadzone43

I wanna know how many years can an advanced PC can be controlled? I’m so desperate, I lost my mom by cancer, and this is too much for me

Vsahay profile image
Vsahay in reply to Lilith_lilith

My father was diagnosed in 2013 with metastatic prostate cancer.He is still doing well without any symptoms.You need not worry about how long this can be controlled.Just make sure that he gets proper treatment and he'll be fine.

Lilith_lilith profile image
Lilith_lilith in reply to Vsahay

Thank you

dadzone43 profile image
dadzone43 in reply to Lilith_lilith

Of course you do. That is true for all of us patients and those who care for/care about patients. When I was in active medical practice and was asked that question I had only one real reply: "God hasn't told me yet. When he does, I will let you know." I am confident that this answer offended some. What is was trying to do, I suppose, was to encourage them to focus on other things besides the inevitable end of life. What do you want to do while waiting? To whom do you need to offer an apology for some deed of yours? What do you need to do in order to savor something in every day? What do you need to try to set right?

Your concern/fear/worry is valid. But that answer is not available. Your dad's oncologist can give population based estimates of life expectancy for your dad's stage of disease. The oncologist's number will apply to 95% but one in twenty will live longer or shorter.

Think on these things.

dadzone43 profile image
dadzone43 in reply to Lilith_lilith

The Summer Day

Who made the world?

Who made the swan, and the black bear?

Who made the grasshopper?

This grasshopper, I mean-

the one who has flung herself out of the grass,

the one who is eating sugar out of my hand,

who is moving her jaws back and forth instead of up and down-

who is gazing around with her enormous and complicated eyes.

Now she lifts her pale forearms and thoroughly washes her face.

Now she snaps her wings open, and floats away.

I don’t know exactly what a prayer is.

I do know how to pay attention, how to fall down

into the grass, how to kneel down in the grass,

how to be idle and blessed, how to stroll through the fields,

which is what I have been doing all day.

Tell me, what else should I have done?

Doesn’t everything die at last, and too soon?

Tell me, what is it you plan to do

with your one wild and precious life?

Mary Oliver wrote this after being diagnosed with lymphoma. She died three years later at 85.

Rexwaterbury profile image
Rexwaterbury

My Psma scan is similar though no prostate. I have burned through many treatments already including adt, xtandi, zytiga, and chemo. Heading to Heidelberg next week for Lu/Ac to try to slow the runaway train.

SeosamhM profile image
SeosamhM

Hey, Lilith. All you need to know is that your dad has cancer and it is metastatic. There is no measure of "bad", it's just "bad enough to require an aggressive treatment plan." The number of metastases ("mets") really doesn't matter at this point, only this plan does.

Read Dadzone43 in this context....many of us have had a similar scan results, and the number of medical tools and techniques is improving every day; we just need to educate ourselves and use them.

If you need any specific information, don't hesitate to reach out to this group - there are experts here! Good luck and thanks for supporting your dad...!

Lilith_lilith profile image
Lilith_lilith in reply to SeosamhM

I wanna know how many years can an advanced PC can be controlled? I’m so desperate, I lost my mom by cancer, and this is too much for me

SeosamhM profile image
SeosamhM in reply to Lilith_lilith

I know how you feel, Lilith, because I have my own "Lilith" named Sydney. I am so sorry to hear about your mother and now your dad.

As Dachshundlove says, everybody is different, but years is the average (i.e., not months or days).

You and your dad likely have some time. I am 52 now and I am 3 years and 5 months in and going strong. I mean, it's annoying because of treatment side effects, but I still do almost everything I used to do.

I'm sorry about your feelings of desperation. Unfortunately, that's par for the course for all of us and our caregivers. But having a short term plan and staying busy is the best way to keep that in check.

Dachshundlove profile image
Dachshundlove

Lilith_lilith

Sorry to hear about both of your parents. You sound very scared about your dad’s health.

There is not a single human alive who can answer your question. PC is a highly heterogenous type of cancer (totally different from person to person)

People can live for months or for many years with stage 4 prostate cancer.

What determines how long one will live is, how they respond to each treatment weighted against their performance status (overall health) at the start of treatment.

Life expectancy is a moving target for all of us, with or without cancer.

Lilith_lilith profile image
Lilith_lilith in reply to Dachshundlove

Thank you

Dachshundlove profile image
Dachshundlove in reply to Lilith_lilith

Keep asking questions. There are so many people here who can help you understand what is happening.

As you get results from treatment and subsequent testing, continue to post. The knowledge here is incredible— you have found the right place.

Has your dad had a biopsy?

I hope you have your father has many more years!

Lilith_lilith profile image
Lilith_lilith in reply to Dachshundlove

Yes he had and thank you for your kind words

RonnyBaby profile image
RonnyBaby

It is impossible or unadvisable to make predictions at this point in time.

I'm sorry to tell you that.

What I can offer up is that after having my own cancer surface, I thought I was a dead man walking.

At the time of my Dx (diagnosis) the urologist told me "THIS is a good time to have prostate cancer".

I thought he was nutz to say that.

I had NO idea what I was dealing with other than the fact that it is a 'common cancer that MOST men will acquire during their lifetimes (if they live long enough). Most of those men will die with the cancer but NOT from it.

My initial thought was - I have 2 - 3 years left - then I discovered how wrong I was. There was no basis to pick a number.

So I went from 2 - 3 years to thinking maybe 5 - 7.

I had read about 'similar cases', then used their number to figure out what was left for me.

Then as I read and learned more, 5 - 7 became 10 years plus.

Am I right with 10 years plus ? NO

I can't spend the rest of my life clock watching .....

Too early to tell, but with the changes and progress that is being made, predictions are harder to make with so much that is still in development.

Then, as I learned and read more on the topics, I found some hope in the 'facts and statistics' that were showing up in the trials and research avenues.

Prostate cancer (PCa) can be sneaky in nature - so many men are surprised that they even have it - until it shows up suddenly as some type of symptom.

In your case, so far, I can tell you that I've read and heard about cases that appeared to be more serious than your fathers - and many of those men are still with us.

It turns out that there are different responses to treatment because EACH case is different.

Cancer is a generic term - not something that can be held up in a black and white fashion - more like shades of grey.

YOU will find some relief and peace when you start reading up on what is happening today, in terms of treatment options and advances in those areas.

Focus there - it will be more positive and realistic.

One closing comment to consider - some of the older data and stats that have been used to report some biased / negative trends have been shown to be wrong.

Even some of the pioneers in the clinical trials stated that some of them were flawed.

In some cases, the outcomes were fixed, the sample sizes weren't appropriate, the studies were flawed or the selection process was insufficient to make responsible, concrete conclusions. In reality, I've learned that the outcomes today are better than ever and that we can't rely too much on some of the older data.

No doubt, your father is ill and needs treatment. It is serious and no one is taking it lightly - but predicting an early demise is a fools game.

Give him a chance to heal - it may turn out far better than you ever expected.

You need to be strong for him.

I sympathize about your earlier loss of a mother.

I have lost both of my parents to cancer (lung and breast).

That fact hasn't triggered a cancer 'panic' in me.

No one lives forever.

We can chose to have a better day today or we can focus on the negative and get really depressed.

Stay positive - it will help the both of you.

May God bless ....

Lilith_lilith profile image
Lilith_lilith in reply to RonnyBaby

I’m so sorry about your parents, your words calmed me down, God bless you🙏🏻

RonnyBaby profile image
RonnyBaby in reply to Lilith_lilith

I'm glad to see that your faith might make you stronger in what lies ahead.

You are not alone and rest assured that things will turn out better than you feared.

I just sense it ....

Lilith_lilith profile image
Lilith_lilith in reply to RonnyBaby

❤️

timotur profile image
timotur

Lilith: this is treatable with a combo of hormone therapy, chemo, and possibly some advanced treatments, like immunization and radioligand therapies. This forum has a wealth of information about treatments, so I would use it as a resource to learn as much as you can, and be your father's advocate in discussing treatment options. There is time, understanding this disease is half the battle.

ascopubs.org/doi/10.1200/ED...

Lilith_lilith profile image
Lilith_lilith

Thank you 🙏🏻

RonnyBaby profile image
RonnyBaby

Give the doctors a chance to treat him.

The fear of the unknown is worse than fighting back.

There are cases considerably worse than his, but that is not the point.

There are global efforts to fight this disease.

Join us in the fight to still have the chance to spend quality time with our loved ones ....

Lilith_lilith profile image
Lilith_lilith in reply to RonnyBaby

He has been under hormone therapy for the last two years, I didn’t know it was metastatic and it’s been a week that he had his PSMA, and This is why I’m so panicked, now he has to take zytiga

RonnyBaby profile image
RonnyBaby

He is likely following a treatment plan that is considered the SOC or Standard of Care.

IF you read up on Zytiga you'll see what it is designed to do to address his current condition.

This is quite common for some advancing patients. Some different drugs are used at certain phases of treatment. Some men respond differently than others. That's why he needs some time to see how effective it works for him.

I understand your recent 'panic' because he has become metastatic. That is a step upwards, in terms of progression, but it is not the end, in terms of treatment options.

This is 'early' in the sense that this is a 'new' diagnosis.

I am no doctor, therefore,as I originally stated, I offer no predictions, in terms of time left (or any other time line).

I suggested you do more reading / research.

It is so easy to assume all kinds of things without understanding some of the facts and options.

Do some homework - there are some answers out there if you read up on them.

Note that many men have 'advanced' to a metastatic state'.

This forum is full of them !

You'll find some long(er)) term survivors among them.

That's why predicting the final outcome with accuracy is impossible.

He could survive for many years, assuming he responds favorably to treatment, but realistically at the age of 78 what are your expectations ?

Today, the life expectancy of men is around 84.

That number hasn't changed much in the last decade or so.

We are all mortal, no matter what we wish to imagine.

If your father is exceptionally healthy (2 years on ADT and post teatment of the original Dx)

you can do your own math but at this phase of progression, it is still relatively early, in terms of treatment options.

There's more to come later - more drug types - more options - more specific tests that might be needed AND new research with more hope as NEW treatments and protocols evolve.

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