prostate cancer so scared psa level o... - Advanced Prostate...

Advanced Prostate Cancer

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prostate cancer so scared psa level over 100

palser1 profile image
palser1

Hi ,Im new here my husband is 56 and has not yet been diagnosed with anything yet he went for a check up and the prostate was hard and lumpy so doctor sent us for a scan . he called us the next night saying all looked clear and fine and urine test came back fine , but said he was waiting on the PSA results the next day we got a call stating his PSA level was over 100 we were devastated he told John it was extremely likely to be cancer , we have had a ct scan with Dye and an MRI with dye just waiting results im terrified what can we expect to hear ?

thanks

carol

65 Replies

Que sera sera...Have a glass of wine and laugh and stay upbeat...

All this PSA story and cancer is part of life

Being healthy or having PC APC it is a game life plays....

We have now all the know how to handle this kind of stuff...

But most important is healthy carefree mind connected to body....

Things happen all the time and it is healthy mind which is the key...

Mind is never sick and it is all in our hand not to get entangled by APC or other hassles of mind...

So go within and nourish yourself with this eternal happy mind state. of SELF called life..

I am what I think....beyond APC

lovemydad profile image
lovemydad in reply to Karmaji

Read, Listen, be your own advocate. Take Heart - My dad was diagnosed with a Gleason 8 when he was 59. He will turn 80 on his next birthday. He has been through much - like many on this site. His PSA has been as high as 2000 - it is currently 79. He was so happy this week - he is back working with my brother and drove an old Semi-truck 3 hours with no issues. Its all about the quality of life you can have with your family - doing what you love to do!

As many said - its a journey - that we are all taking.

Sisira profile image
Sisira in reply to lovemydad

What an inspiring story "lovemydad" and what a wonderful daughter !Wish your dad longevity and all the strength and courage for you to support him and your own self.

Sisira

palser1 profile image
palser1 in reply to lovemydad

That is amazing news , gives everyone hope . sending so much love and best wishes for you all x

Lulu700 profile image
Lulu700 in reply to lovemydad

👏🏼👏🏼👏🏼👏🏼 go dad!

Sisira profile image
Sisira in reply to Karmaji

Hello Karmaji,Best advice I have ever come across, for one who is going to be diagnosed for PCa or any other life threatening pathological condition. Pathogenes cannot physically attack the mind. KEEP THE MIND SICKNESS-FREE. Then only we can face the life with any complex issues.

Appreciate your post.

Sisira

emontis profile image
emontis in reply to Karmaji

Your response is inappropriate. You must be high or just stupid.

Karmaji profile image
Karmaji in reply to emontis

thanks.....stupid I am and love this state

emontis profile image
emontis in reply to Karmaji

Maybe you can keep your state to yourself and not offer frightened spouses your pathetic dribble

Bunkerboy profile image
Bunkerboy in reply to Karmaji

Ignore those folks. Great attitude👍🏻😷

Karmaji profile image
Karmaji in reply to emontis

When connected to Life, one is always high and stupid on first degree...it is a joyful state.

Savoy profile image
Savoy in reply to emontis

Why? Better to just cower in in the fetal position and ponder “thou ominous and fearful owl of death”?

(Thanks, WS!)

emontis profile image
emontis in reply to Savoy

You must think your sarcasm is witty. The response to a frightened spouse to drink and not worry is pathetic. In 3 decades of practice empathy was an understanding of the pain and fear patients harbor.

Bunkerboy profile image
Bunkerboy in reply to emontis

Fear mongering helps no one.

Savoy profile image
Savoy in reply to emontis

Calm down. I had a frightened spouse, too. But after the initial shock, we accepted the situation, learned everything we could and constantly asked questions. Particularly helpful was an avoidance of bitter, snarky people.

And the word is DRIVEL, not dribble. Geez.

Bunkerboy profile image
Bunkerboy in reply to emontis

Nastiness not necessary on this site. Enough of it out there in the world👎🏻😷

Hailwood profile image
Hailwood in reply to Karmaji

Do any of your friends ever just roll their eyes and make an excuse to leave a room when you come in? Just asking.

When I visited URO and he did DRE

In 5 minutes , without any hesitation, tells me with a strange smile,

my friend,you have T3 stage of prostate cancer

Never knew what the hell it is and sure people think cancer is death sentence.

I shook hand and said see you later.

Went home and went out with my wife for a nice evening for dinner with wine....

Then started mental adjustment to take together next journey as a new norm not knowing what it will be...We always enjoyed unknowns....

Just keep breathing, keeping QOL ....rest is just a play of life with humans....

Jackpine profile image
Jackpine in reply to Karmaji

Karmaji,

I like your attitude as well. The news of APC can be devastating but you must keep a happy outlook and make long term plans. I believe if I have a goal to reach I need to keep going till the goal is reached.

Peace Brother

Your husband will likely be asked to undergo a biopsy. This will determine how aggressive the cells are if cancer is present. The other scans you mentioned will provide information about how much it has spread. With that information you will have a sense of the stage of the disease. That will help you determine treatment.

You may want to inquire about a psma pet scan, which recently became more widely available in the usa, and has been available in other countries for a while. It can help with the staging and initial treatment decisions.

Yes it scary and the only thing that you can do at this point to relieve that fear is to

1) learn alot about the disease

2) take action

You clearly are already doing both.

Prostate cancer is a slow growing cancer, not to be compared with other cancers. You do not have to be scared , the members of this group live for many years with this cancer.

The next step will be a biopsy which will detect the Gleason score, which tells how aggressive the cancer is. Then the prostate will be radiated or removed by a surgeon. If the PSA value is not low enough following that, your husband will get hormone therapy. There are more alternatives but I this are the main ones.

A few men are diagnosed with a PSA value much higher than 100 ng/ml, so this is not a death sentence. You do not die from the PSA value.

Mascouche profile image
Mascouche in reply to GP24

It is not always slow growing. Might be the case for the majority but for many younger men, or men with BRAC1 or BRAC2 it can be swift. Does not mean that there is no hope but it can be fast moving.

Shooter1 profile image
Shooter1 in reply to Mascouche

Mine just went into hyper-drive. Up 239% from a month ago...PASDT went from 25 days last month to 12 days this month... It can be fast growing with BCR which I am now experiencing. Got 4 1/2 years with this monster and still feel good right now...hope it lasts a while. Life is good.

Lulu700 profile image
Lulu700 in reply to Shooter1

😳🙏

Sorry to read your ordeal. Hearing the C word is a life altering event.Get the scans, get the biopsy and get educated on prostate cancer.

Post another question to this site requesting references to Medical Oncologist and Radiation Oncologists in your area. You'll want to make appts with them as soon as you get the biopsy and scan results.

The treatment landscape for prostate cancer has totally changed in the last 5 years. Many new drugs, treatment protocols and even treatment sequencing that allows drugs to work longer.

Best Wishes.

Unless it is a really aggressive Pca, your husband is more likely to die with the cancer than from it. There are a lot of new treatments out there. More than there were when I was diagnosed 29 years ago.

palser1 profile image
palser1 in reply to Magnus1964

wow , thank you that gives me hope .

Lulu700 profile image
Lulu700 in reply to palser1

We must always keep hope alive and not feed into the negative… Please don’t listen to any callous predictions or dismal life expectancies. No doctor knows these. 🙏

You will find men on this site who have survived with prostate cancer for more than 20 years so far.

His next step should be a bone scan/CT.

Take it as it comes.

palser1 profile image
palser1 in reply to Tall_Allen

Yep he has had a ct and mri just waiting for results .

Tall_Allen profile image
Tall_Allen in reply to palser1

No, I said a BONE SCAN, not a CT or MRI.

palser1 profile image
palser1 in reply to Tall_Allen

Oh ok I thought the MRI did that with the dye in ? Sorry I’m new to this . This is so much information to take in it’s overwhelming ! I thought a biopsy was next ? So we need to get a bone scan ? No problem I will ask for that . Thank you .

Tall_Allen profile image
Tall_Allen in reply to palser1

If the bone scan is positive, he will not need a biopsy. If it is negative, he will. Either way, he should not start Casodex before the bone scan or the biopsy.

Karmaji profile image
Karmaji in reply to palser1

Bone scan is not enough... In my case, my bone scan was all clear. Then my onco said I should have Choline pet scan before any Firmagon.

There the scan showed 2 tiny spots on bone...

.It changed the whole game and these guys started calling it T3BN0M1...a stupid staging....Never understood M1...2 spots or Christmas lights all over same thing

And the question was what to do...another stupid thinking ...of arguing...and indecision

Anyhow, I went for RT with radiating tiny spots.....

Simple logic, get rid of all what every one can.....no harm done..

.Do not worry about doubtful clinical trials....It is OK but there is more than that...

That is some gut feeling....

So first is get all scans ...go for PET scan Choline or PSMA etc....

Before any protocol treatments....

Take time and relax and have second opinion or even 3 rd opinion....

Gabby643 profile image
Gabby643 in reply to Karmaji

Agree 100%

Gleason number is important and can help predict speed of the cancer. Nobody dies from Gleason 6, Gleason 9 requires aggressive treatment.. I'm a G-9, been fighting this for 16 years, my PSA is now over 5000...Get a good book and LEARN what you are dealing with...

Lulu700 profile image
Lulu700 in reply to Fairwind

Dam Fairwind ! You are amazing indeed Sir!’

Hi there, sorry to have to welcome you both to the club. I was diagnosed with APC on Christmas day 2019 following a biopsy which revealed a gleason score of 9. While I was in hospital for the biopsy, I also had a cystoscopy which identified the PC had invaded my bladder. A week or so later, I had a PSMA PET Scan which highlighted PC in my pelvis. So, it started with a PSA reading of 50 and an inability to empty my bladder and ended up with a diagnosis of Stage IV Prostate Cancer. I was given tamsulosin to get me peeing again and placed immediately on ADT (eligard and casodex) to stop feeding the cancer testosterone. Withing three weeks I started Chemo and finished with Radiation therapy eight months later. Its a scary thing to come to terms with but you do get through it. My PSA is now 0.09 and off all treatments. I simply have regular blood tests and scans to keep an eye on the monster. One step at a time, you've got this, cheers. 😎 DD.

palser1 profile image
palser1 in reply to Doseydoe

thanks Doseydoe x

Lulu700 profile image
Lulu700 in reply to Doseydoe

.09 oh yah! Not without much effort on your part I am

Sure. 👏🏼👏🏼

I was 56 when a PSA was taken with GP as an afterthought. I had nothing I would have called a symptom and was there for a physical because I hadn't had one for a few years. PSA 156, within a few weeks I had a DRE, Biopsy, CT Scan, Bone scan. It hits you all at once. Just realize it takes time and that you have time. 7/15 will be 2 years since the call from Urologist, cancer, Gleason 7, clean bone scan, suspicious lymph nodes, assumed L1. After all said and done not metastatic by standard scans. If your husband is diagnosed with PC my recommendation is stay physically active because it is the best thing to fight off what the treatments will do to him. Eat well, learn to live one day at a time and don't live in limbo waiting for the next Dr visit or next test result. Let each thing come as it may and address it at that time. Enjoy each other and the time you have each and every day. My perceptions changed for the better in almost every way. Stay positive don't let fear in. These are my thoughts you will read many more. Sorry your here but welcome.

Hi palser1 - I’m sorry to hear this. I was diagnosed at 46, now I’m 51. You found the right site for help. I have a couple pieces of advice: 1) take a deep breath this is a long road. 2) if confirmed with prostate cancer find a major cancer center or hospital with specific expertise with prostate cancer. 3) get 2 or three second opinions before deciding a course of action. I’ll stop there for now. Check back with the guys on this site they know so much that will help you. Stay strong!!

I still remember when I got my annual psa test at the age of 57 and ended up going through the biopsies. I was shocked by my diagnosis but I educated myself, though I didn't know if this group in 2016. It is important to learn all you can about the forms of the disease and the potential treatments. There are new studies showing what has worked best and worst.

Then sit, talk and try to absorb all of it. An immediate response is not likely to be needed. Even if you take a few days to be calm and think it through. There are some very knowledgeable people here and they can offer opinions but ultimately, it's your decision. Be sure you are seeing an oncologist (if it is PCa) who specializes in prostate cancer.

You will get through it. Try to go to a larger teaching hospital affiliated with a university and don't be afraid to get second opinions. There are many very good treatments, so don't despair.

Take some deep breathes and always go together to appointments, so one can be taking notes and asking questions because the patient is anxious and somewhat numb. Good luck and keep us posted. We are always here.

See a urologist immediately for confirmation.

I know how your world Feels like it’s crashing down. Take a breath Which I know it’s hard. The waiting is the hardest then comes the results. Then you start fighting like hell to learn all about it it’s horrible disease . Every Love one in this group has been where you’re at right now. I pray that you get really good results

palser1 profile image
palser1 in reply to Collarpurple

thank you so much for your kind words im trying to be calm

Hello Carol,With this unexpected fate of your husband you have certainly fallen deep down! But you have fallen on to a group of brave warriors who will raise you and equip you with the necessary knowledge and the guidance to fight against this incedious disease of Prostate Cancer. Keep your chin up and be ready to face anything and fight as exorted by the invaluable posts above. I am sure you will walk through a long journey with your husband and give our forum the best inspiring story in time to come. My Best Wishes!

Sisira

You cannot say much from the PSA alone except that it is almost certainly cancer with a PSA that high.

There is not an absolute correlation between the level of PSA and how serious the cancer is.

A high PSA is indicative of serious disease, but not necessarily true, conversely it is possible to have a low PSA, in some rare cases well below the range that would trigger a biopsy, and have serious metastatic disease.

I had a starting PSA of 130 - 140 and the cancer was confined to the prostate and the surrounding tissues, so it was highly treatable.

You have to wait for the biopsy results and the scans, then you will know what you are dealing with.

It is best to take statistics on survival with a pinch of salt, they do not say much about the individual, they are predictive for groups.

Patients and worse, doctors, have a bad habit of regarding nomograms like crystal balls, they are not.

Hi, of course you are worried, who wouldn't be.

Lots of advice here, but here's one for you to hope for.

I had a PSA of 103 in 2012, the doctor thought it was blood disorder 😳.

Eventually I had a PSA 150, I was diagnosed with P.C. A similar age to Jim, now I will be 65 in November. The PSA is now under 0.04.

Once you have all of Jim's results and the treatment has been decided, come back to the forum, most of us here will be able to give you both help and support.

Phil

I was 56 years old when I was DX and I turn 80 in 3 months. I also found out what my PSA (95) was during a routine physical. I had many second opinions and all said that with a PSA of 95 a RP was out of the question and EBRT was the treatment plan. . A major NYC cancer institution told me "There is nothing we can do for you. Go home and make the best of your remaining time." I did just that! I had some time before starting EBRT so I quickly boned up on PCa. I went to the library, bookstores and a very new internet. My research told me that EBRT was not likely to control my PCa and Brachytheraphy was the best option. I spent 15 years in remission and the last 9 years fighting recurrence. Last year I had to have my prostate gland and bladder removed. I show no new symptoms but my PSA is going up at a fairly good rate. Had CT and Bone Scan yesterday and will get results tomorrow. If both come back negative then I move on to an Axumin PET/CT scan.If you don't know the usual PCa abbreviations look at the right side of this page under "Pinned Posts" and click on PCA Abbreviation List for help.

I hope this was not too long and if you want any addition info don't hesitate to ask.

MikeP

I was diagnosted after my PSA double in 6 weeks in Oct 2019. G(4+3=7) Grade 3 on the whole right side. Following a pre-RT Scan, they discover multiple tumors on both sides and very aggressif. Due to my age (72 y.o.) and many chronic diseases, surgery was not an option. Put on Cassodex 50 mg/30days + Lupron Depot 45 mg/24weeks and VMAT-RT 3Gy X 20 Fx= 60 Gy on the prostate and the pelvic area. Due to the response to the ADT (PSA wnt from 20.4 μg/L down to <0.01 μg/L so the Lupron Depot was put on hold. I still have my prostate with no incontinency nor (now) impotency.

Last blood tests on May 28 2021 and I will get the results the coming Wednesday.

Lulu700 profile image
Lulu700 in reply to doc1947g

Good luck doc!👍

Wow that’s great news please keep well !

Hi Carol. I was diagnosed 3 years ago at age 55. My PSA was 103. Like your husband. I was told it was likely cancer. Biopsy and scans confirmed Gleason 9 and that it had spread to bones and lymph nodes. It was a shock. My partner and I spent months going through a range of emotions, confusion, anger, tears, etc. That's all normal but it does get better once you learn more about the disease and treatments. This is a great forum to do that.

The cancer is going to have an impact on both of your lives and you need to be prepared for some difficult decisions, and potentially some lifestyle changes, but it is not all doom and gloom. Three years after diagnosis, I am doing well. Treatment is working. My PSA is now 0.10. My bone tumours are no longer visible on a bone scan. My life is different than it was before cancer but I'm enjoying it the best that I can.

Feel free to reach out here when you need to.

palser1 profile image
palser1 in reply to MarkBC

Hi Marc , so glad to know you are doing well that brings hope to me and john . I’m really hoping that it isn’t outside his prostate but I think it is . The doctor said he saw shadows and maybe lesians on his bones .

Can you tell me what treatment you had ! And what sort of side effects it caused .

Thanks so much .

MarkBC profile image
MarkBC in reply to palser1

I'm hoping it isn't outside the prostate either. I will say, however, that my urologist told me the same thing. He had an early look at my scans before the radiologist report was finished.

I am on androgen deprivation therapy (ADT) injections which I get once every three months to stop testosterone production. You can Google the numerous side effects and almost all of them apply to me ... fatigue, sexual dysfunction, weight gain, osteoporosis, brain fog. There are several ADT drugs that basically do the same thing. Most men seem to be on Lupron. I am on Zoladex. I think it is because, here in Canada, the government covers health care costs and they probably got the best pricing deal for Zoladex.

When I was diagnosed, I was offered a choice of either abiraterone (Zytiga) or chemo (docetaxel) to go with the ADT. My doctor advised chemo because, at my young age, I should be able to tolerate it well. She also thought we should hold abiraterone in reserve for later. I took her advice. Chemo wasn't fun but it was easier than I imagined and it really knocked my cancer back. Again, I had the typical side effects: fatigue, neuropathy, taste buds.

Tall Allen has posted here in the last month about the PEACE-1 trial results indicating both chemo and abiraterone should be used together. I'm going to talk to my oncologist about it when I see her in a few weeks.

The science around prostate cancer is changing quickly. I have a good relationship with my oncologist and she said "If you have to have prostate cancer, this is a good time to have it". As an example, at diagnosis the plan was for me to have debulking radiation after chemo. While I was having chemo, studies were released showing that debulking radiation didn't help so I didn't end up doing it.

The death statistics that you read don't reflect the latest advancements. My oncologist would not put the word "terminal" on a form I needed filled out. She said, "You are a long way from terminal."

Keep us up to date on your husband's progress. You'll find lots of support here. I found it comforting to know there were others experiencing the same things I was.

Hi Carol,

I am in my 10th year fighting this. I had crazy metastasis and its definitely been a struggle, but the meds and treatments now are way better and this is not the death sentence it once was. Unbelievably, my PSA is undetectable and all the lesions are remiss.

You may have to get ready for a fight, but come out victorious.

It will just be a different season of your lives,

Best, John

Big hugs, Carol!

It’s understandable that you’re terrified, but you’re also right to try to stay calm. You’re here in the advanced prostate cancer forum (there are others in health unlocked) but as yet you don’t know if that’s where your hubby really needs to be. Please try not to panic.

I was diagnosed with PCa at 59. It was a shock, however I’ve have had great advice and treatment, and learned to live with it pretty well, over 2 1/2 years in.

Once you have some solid facts, there are some amazing and sensible people here (Tall Allen to name just one.) Armed with those facts, you can add key info (eg on hubby’s test results) to your profile as you get them, and that will help these knowledgeable people to answer your questions.

While it’s a bit too soon to say for sure, chances are this is going to be very manageable. Everyone is different of course, but hopefully you’ll soon be feeling well supported and more able to manage.

All the very best!

palser1 profile image
palser1 in reply to Flatman

Thanks so much x

Take deep breath: it is scary but the sky is not falling. You will hear that it is cancer. You will hear from the scans that it is/is not stil, in the gland. You will hear that a biopsy is needed. You will hear that there is a host of treatments. You will hear that he+you must choose a treatment. You will check out the Caregivers Forum, where you will read that it is not the end of the world but the beginning of a new path. You will kearn how important you are to his treatment and survival.

Diagnosed in February 2018 at age 66, after my GP did a DRE and found lumps and inflamation. Went to a euologist for a biopsy, Gleason 9 with possible spread to the bones and lungs, then went to a oncologist for a CT scan and bone scan. Found 3 spots on the bone but no involvement in the soft tissue, had my five moments of hugging my cat and crying but then remembered what the euologist said that this is not a death sentence and there are many treatments available. I went for Lupron and chemo right away which is what the oncologist recommended, psa went from 156 to .6 over the six treatments 3 weeks apart. Do not be afraid of chemo, still worked part time and led a normal life, only side effect was the loss of body hair and thinning of the head hair, a small price to pay for a longer life. I did the research and followed the diet that they recommended. Now 3 years later after psa slowly crept to 15.5 I tried Casodex that failed so went to arbitrone with prednisone to get it down to .7 after 5 months, still work part time, walk around 8000 to 11000 steps a day, have done some alterations to the diet like red meat once a week with more fruit and vegetables. Life is good, my prostate is bigger due to age so I am on Flomax, going for my 6 month scans next week. I was lucky to have a great euologist and now a great oncologist that is very good, going on four years this fall and expect another 20, was likely had it in 2017 before the symptoms started. One thing that is gone is the sex drive on ADT but single and at 70 who cares as there are more important things in life to appreciate. Good luck on this journey with your husband and support him, continue reading this site and pay attention to the posts of Tall Allen and Magnus for practical advice. There will be things like PSA and scan anxiety with bumps in the journey but keep on fighting and keep the faith through prayer.

I was diagnosed at similar age in Feb 2020, PSA 216, extensive metastases to the bones. My advise is to stay positive, eat well, exercise and take each day as it comes, dealing with whatever it brings. I also find meditation helps.

Tall_Allen and many others will present excellent advice and help you through the steps as the issue is diagnosed and there will be metaphysical dribble that only serves to confuse the issue from individuals like Karmaji. A biopsy will confirm if there is cancer in the gland and how much of the gland is affected as well as the type of cancer. Then there will be options such as radiotherapy, surgery and medications, and a good Uro surgeon and Oncologist as well as thoughtful advice from people who have gone through this process can help guide you make a decision that serves your husbands interests, I started this road 8 months ago and I feel well after surgery and now on Lupron and Erleada. Stay positive and always seek a second opinion, as good doctors will never be conflicted by that suggestion.

Dear Carol , welcome .. Great job finding this cite early on . I was 53 and dxed in 2015 .. And I didn’t find this cite until 3 years in. I suffered a lot of knot knowing, so please don’t feed too much into the fear of not knowing. If it is cancer you two will deal with it together. The initial anxiety can be extreme. Once you know all it will be easier to move forward. . Take care .. and breath .. you’ve got this!

MikeP, yours are s an an amazing tale that give hope to newbies and me personally. I started this at 53 now 60. I salute you Sir! 👍

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