New to this ‘stage’: Hi there, While... - Advanced Prostate...

Advanced Prostate Cancer

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New to this ‘stage’

Mish80 profile image
22 Replies

Hi there,

While avoiding Dr Google I stumbled across this forum, which seems to be full of lovely supportive and informative people. My dad was diagnosed with prostate cancer in 2010 (Gleason 7) and following a radical prostatectomy has had no further treatment due to stable PSA readings. A rise in his PSA prompted a PSMA PET scan in August which came back clear. Another rise (to 1.4) led to another pet scan which showed a spot on his spine. So here we are, in the advanced category. He has an MRI next week and a meeting with his radiologist to work out a plan of attack. I’m assuming hormone therapy will be the order too. I’m trying to be positive and I have been but this week I’m flat and really struggling. Dad is pretty positive and is still youngish (66) and active with no outward signs of being sick.

Any words of encouraging right now would be greatly appreciated.

Mish

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Mish80 profile image
Mish80
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22 Replies

Welcome Mish80.. 66 isn’t old , if otherwise healthy he can fight this uptick and live many more years ..9 yrs with the RP is good.They tell us that a reoccurrence is inevitable .. love dad .. Thats the only cure for pc .. Take care

Mish80 profile image
Mish80 in reply to

Thanks Lu,

The last 9 years have felt like we were holding our breath for a recurrence. Is it usually the way? It comes back eventually down the track?

Shooter1 profile image
Shooter1 in reply to Mish80

Yep. Sweating every blood test. I'm moving on to retirement home we bought two years ago and planning for 10 years. You have been blessed with 9 yrs of Pca free time. Be glad. Be positive. ADT not all that bad and life can still proceed with new normal. We all know someday it comes sneaking back but enjoy life in the mean time. Best of luck to you. Keep us posted we are here with love and support.

in reply to Shooter1

Sounds great shooter...

Mish80 profile image
Mish80 in reply to Shooter1

Thanks Shooter... you are right, it just becomes a new normal huh ? And it’s fighting against the horrid term ‘advanced cancer’ which implies life is over which is it not! Far from it.

in reply to Mish80

I just quoted a term I read recently on a prognosis for stages of APC and survival rates ..... “ inevitable” reoccurrence ... If our hearts or something else doesn’t get us first.. ..we are here now, so we make the best of it. This mindset is in all of us after dx... spoil your father all that you can . He’s lucky to have such a fine woman as his daughter.. Good loooking out for him. That is true love.. nice to see...thank you

Mish80 profile image
Mish80 in reply to

Only daughter :)

in reply to Mish80

The one and only ... his reward in life .. 🌵

Tub111 profile image
Tub111

Welcome Mish...you will get tons of great advice and tips from fellow members here. Try to be as upbeat as possible but look after you too!

Wishing the best and many many healthy years for dad.

Sheri (cheerleader for you all now)

Mish80 profile image
Mish80 in reply to Tub111

Thanks Sheri :)

I have small children and work so life is busy... I am just wanting to spend time with dad now but juggling it all is a task.

Question: how is aggressive PCa determined?

Tub111 profile image
Tub111 in reply to Mish80

Mish- I totally get it. My daughter was in the same boat with kids and work and very busy lives. Glad that you are trying to spend as much time as possible with dad.

As for your question I personally could not answer that as there are many more people on here like Tall_Allan, Nalakrats to name a few with extensive research and knowledge. They can hopefully answer it in part.

My late husbands PCa was in the extreme aggressive side so I spent more research on quality of life for him. Your dads does not seem to be the same.

Love and hug him and all the family...it’s the best medicine ❤️

Sheri

Mish80 profile image
Mish80 in reply to Tub111

I just read about your husband’s story - I am so very sorry. You lost him this January and you are still on here supporting others? You’re amazingly kind. Thank you for being here.

in reply to Tub111

👌

BarronS profile image
BarronS

Your Dad is in a great position in terms of where he would be on the advanced prostate cancer worry scale. He currently only has 1 bone metastasis on the axial skeleton and is hormone naive. From all the studies that I have read, someone like that would have the best chances for long term survival - I'm talking 10+ years.

Your Dad isn't going to have any outward signs of being sick because going on what you said, he only has 1 lesion on his spine. With such low tumor burden, it would be extremely rare to have symptoms unless the lesion is pressing on one of his spinal nerves.

You're talking about an average of 3 years just on hormonal therapy before any type of second line therapy is even initiated.

He's in a really good spot right now so I would not worry too much. I know how hard that is because my father also has advanced prostate cancer.

NPfisherman profile image
NPfisherman

Hi Mish80,

Welcome to the forum.... Is he on Lupron? I had a single bone met--I go to Cleveland Clinic and my MO put me on Zytiga and prednisone with Lupron... currently, undetectable...I try and exercise regularly...lift weights for bone strength.... after getting my PSA to undetectable, I had stereotactic radiation to my met... info on a clinical trial on stereotactic radiation is on page 4 of site below:

cancer.gov/about-cancer/tre...

Several knowledgeable posters here.... pjoshea13 is our most prolific poster of scientific information, and Nalakrats provides a wealth of information...

Best of luck to you and your Dad....

All the best,

Don Pescado

Mish80 profile image
Mish80 in reply to NPfisherman

Thank you for your reply and the info on stereotactic radiation. No dad is currently on no meds at all. 9 years ago his surgery and now just two weeks ago the scan showed the spot on the spine. He has his MRI this week and meeting with the radiologist for a plan of attack. Should he be on hormone therapy at the same time as the radiation treatment ?

NPfisherman profile image
NPfisherman in reply to Mish80

The synergy would be with being on ADT (hormone therapy) for 2 months and then getting stereotactic radiation... that should get him to undetectable--some advise fasting before radiation to put additional stress on the cancer cells to help induce apoptosis... The radiation should do it.... best of luck...

Don Pescado

Tall_Allen profile image
Tall_Allen

You are right that hormone therapy is a good next step. But he has several options:

- intermittent or continuous

- androgen antagonist (like Casodex) or GnRH antagonist (Firmagon) or GnRH agonist (like Lupron)

- a combination or sequence of the above medicines

- SBRT to the spinal met to prevent spinal compression in the future

Hopefully, this can be managed for a very long time.

leo2634 profile image
leo2634

Welcome Mish I have two Daughters that compete for the title of Daddy's girl on a daily basis. My heart fills with love each and every time I get to see one of them they have families of there own now but I guess I am the first man they ever loved. I'm on Hormone therapy a year now and it's not that bad . it's definitely a life style changer but the key word in that is " life ". My treatments are Zytiga,Prednisone, Eligard and a once a month shot of Xgeva for multiple bone Mets. Tell Dad he will be around for a long time to come. Never give up never surrender. Leo

larry_dammit profile image
larry_dammit

Welcome. Always hate to hear that the monster has began his attack on another brother. It’s hard but stay positive he will need all the support and love he can get. 🙏🙏🙏

Jackpine profile image
Jackpine

Mish80,

First great job on avoiding Dr. Google! This site has a lot of people from around the world that are either living with or a care giver for someone with this disease.

You and you dad are in a great community of knowledgeable and supportive people who are here to share treatments both successes and failures.

Your father will have good days and bad but stay positive, many of us have been living great lives with advanced disease for many years.

Make sure to enjoy life and live never let this disease win.

JimVanHorn profile image
JimVanHorn

Hello Mish80! I am 73 years old and started my PCa therapy in 2007 with radiations #42. Then in 2011 they found metastases and I started on Lupron injections (Eligard - generic) every 3 months for 6 1/2 years plus 30 more radiations. So it was not easy, but I lived through it. So it has been one year since my last therapy and my PSA is still 0.006. I am on active surveillance and I will see my oncologist in June. I stayed the course and it paid off, so just keep asking questions and do your best to keep your Dad moving toward a cure!

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