A few questions and advice desperatel... - Advanced Prostate...

Advanced Prostate Cancer

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A few questions and advice desperately needed here , only one shot at this please help

FormulaRob profile image
32 Replies

As always I appreciate all of you. My 65 year old father has met with the oncologist for the first time ( he was in his early to mid 30’s only) so my father may replace him depending on what you all think here

All info in bio but here is a quick summary for advice needed PLEASE. I desperately want to make sure I do everything I can for my dad and he’s finally going to let me come to appointments with him.

1. September his CT and Bone scan showed no spread to any bones or organs other than a right 10mm illiac lymph node. Biopsy came back saying group 5 cancer most aggressive and quickest spreading (Gleason score 9)240mg of firmagon started followed by 80mg every month to come. This is not paired with anything else.

2. Oncologist my father met for first time today. Oncologist told my dad they need to redo a CT scan and bone scan since the last ones were 1st week of September. Oncologist says he can’t decide if my father is stage 3 or 4 yet as it will depend on new scans to see if anything has changed.

3. Oncologist then tells me father that he has 3-5 years to live but he says he can squeeze out 5 for my father. If the scans come back good with no further spread .. then it MAY be curable and In that case could get my father 10-15 years. If he decides that my father is not curable then he will advise the team to spread treatments out rather than go aggressive and by doing this he will live 5 years rather than 3 years

My questions:

1. We see the radiologist for the first time December 9th. Should I go with him for this appointment and if so what should I be asking or bringing up to the radiologist

2. Now that my father is on firmagon, if they don’t do the new CT scan and bone scan until 3 weeks from now is that okay? Assuming firmagon will prevent cancer spreading any further meaning the 3 week wait is nothing to be concerned about ?

3. If they decide he is not curable. Do we accept this spread out treatment plan to give him 5 years. Or do we kick this oncologist aside to have someone with a more aggressive and positive approach to try and get 10+ years ?

4. Until the new CT scan and Bone Scan are complete. Is firmagon alone good? Or should he be doing more in the mean time regardless?

5. For someone who shows no distant spread .. is it normal to still hear 3-5 year expectancy? Even if these new scans come back and show some slight progression to a bone or spine.. it sounds like 5 years is still selling him short considering him being a very healthy 65 year old with NO other health issues and not obese or anything.

6. Is there any other advice to offer me here or are there any other questions that I should be asking and haven’t here ?

32 Replies
Seasid profile image
Seasid

Can you ask the oncology nurses for opinion?

I asked my and I believe she knows the situation in the hospital better than someone who just started seeing doctors?

It is difficult to recommend without knowing the situation in the hospital better than we know it now.

Nobody knows how long someone will live.

I am also only on Degarelix injections like your father and after more than 4 years after my diagnosis the most recent scans did not find any metastasis.

Only a cancer in my prostate.

Believe me nobody knows what will happen in the future, but the best tactics is to follow the situation closely and react accordingly.

Your oncologist talk a lot.

My didn't tell me anything in the last 4 years but was monitoring what is happening. I personally know that it is difficult to predict a future.

I believed that I not be alive 4.5 years after my diagnosis and now I am doing my prostate radiation as i don't have any visible mets on all the scans.

I really don't know what will happen.

I just hope you have a knowledgeable oncologist. At this stage does not matter what he is saying. Nobody really knows.

Ask your oncology nurses for opinion about the doctor and who is the best in the hospital. I have the best oncologists here.

FormulaRob profile image
FormulaRob in reply to Seasid

Hi there Seasid,

I see on your bio that you have some bone mets. but on your answer here you mention that you don't have any. Were these there at time of diagnosis and were treated? I just hope we pick the most effecive method that gives him a long life.. i can't accept losing my father in only 5 years. this news has me feeling like I myself just died inside .. in fact the idea of myself dying right now seems more comforting than having to live through seeing a loved one go through this honestly

Seasid profile image
Seasid in reply to FormulaRob

What you should know and understand now is that we have 2 stages of this deases.

The first stage is when you have a HSPC.

The second stage is when the cancer mutate and reinvent himself. That is the second stage. It is called CRPC.

Nobody knows for how long the first stage last in one individual. Therefore difficult to predict for how long someone will live.

Usually they say that the CRPC stage is not just shorter but also more depending.

The HSPC stage is like walking in the park. The CRPC stage is not so.

Until Degarelix is effective and your PSA is under 2 you are considered that you are in a first stage.

Burk profile image
Burk

Hi, I'm glad to hear that your dad is on Firmagon. This will buy you time to make other tx decisions and will prep your dad for RT. Your father is fortunate to have been dx as soon as he has. With the info that you have given so far you dad would be considered curable; however, with a psa like your father has the probability of spread is very high.

My dx was very similar to your dad's I was GL7 11 of12 N0M0. I had 24 mo of adt + RT. My psa is currently <.1; PTL!

No doctor can predict a death date. Yes, they have their statistics that they reference, but there are so many variables that their predictions should not be taken as fact. Rest in the Lord! Your dad's life is in His hands. He will not die until God wills it! Pray for twenty years. Be grateful for what you are given!

You should discuss with your RO the extent of treatment. With probable lymph node involvement, he should receive RT to the widest area safely given. Prostate + Lymph, I'm sure your RO will discuss it with you. Keep looking up!

FormulaRob profile image
FormulaRob in reply to Burk

Hi Burk,

Similar it seems except my father has a Gleason score of 9. I still don't know if that just means his cancer is more likely to spread and quicker without proper treatment?or even with treatment this thing will still spread? or if it means that it is harder to treat, He also has one external lymph node involved so that likely complicates things along with the fact that these new scans may show more than the scans form 2 months ago.

treedown profile image
treedown

I had a similar diagnosis, lower Gleason PSA 156 and N1M0. We are all different and much depends on our response to treatment. Again it's all different. The impression your MO has is that there is more there than what conventional imaging is showing due to the high PSA. Have they not offered a more sensitive scan? Pylifary PET or Axumin. I was told this is SOC now in cases like mine, though it was not in mine over 3 years ago. Don't listen to how long he has. I never asked and was never told.

FormulaRob profile image
FormulaRob in reply to treedown

Hi Treedown,

So unless new scans come back with futher spread... then my father seems to be in a similar position as when you started your journey here except you had a Gleason score of 7 whereas my dad is a 9. Would that alone give him a 5 year life expectancy ?

Also your PSA at time of diagnosis was 156. That is extremely high and in many cases suggest metastasis which was NOT the case for you. You had slight lymph node involvement which to me means you were or are potentially curable. The fact that your PSA was so high yet no distant spread.. does that mean that your tumor was particularly large? I believe size of the tumor could raise PSA to fearfully high numbers rather than actual spread itself

I am just so worried for him and he desperately needs some reassurance that we can do much better than 5 years

treedown profile image
treedown in reply to FormulaRob

Only CT and bone scan was available for me in 2019. Based on clean bone scan and regional LN spread I was treated with curative intent. Details are in my profile. Both my MO and my RO tried to get my insurance to pay for the best PET available at the time which was Axumin. The thinking was there was more disease than conventional imaging was showing. It was denied and when I offered to pay our of pocket they said it won't change my treatment which was not completely true. If they had found more I would jot have gotten as much radiation as I did. It is looking like my curative intent may have failed as my PSA is rising but ita a little to early to say for sure. I will be getting scans after my next test in December if it continues at the same rate it has been rising. I can tell you really want somebody to tell you your father has this long or that long to live but the reality is nobody knows. Be encouraged by good responses to treatments and pray for more if that brings you peace.

I don't actually know how big my tumor was, I never saw it on any documents. I was asymptomatic and found out I had PC when my GP asked off handedly if I wanted a PSA test and I said yes. I attributed getting up to pee once or twice in the middle of the night as age. I understand I should have access to better scans now if my PSA hits 2 and is considered a BCR. Maybe I'll find and answer to what the high PSA was coming from.

Take care and best of luck for you and your father.

Bkraus1 profile image
Bkraus1

You need to get a PSMA scan. This is more accurate than CT bone scans.

FormulaRob profile image
FormulaRob in reply to Bkraus1

I will have him ask the specialist for this scan. Not sure why they are insistent on regular CT scan and bone scan only

GP24 profile image
GP24

Let me try to answer your questions:

1. Your father has a low metastatic burden. Ask the RO if he is ready to radiate the prostate on the basis of this study. esmo.org/newsroom/press-rel... One could also extend the radiation to the lymph nodes with a boost to the visible, affected lymph node.

2. Because firmagon will prevent cancer spreading any further the 3 week wait is nothing to be concerned about.

3. A grade group 5 tumor that has spread is not curable. However, I know patients who live more than 12 years with it. It depends if you get the radiation mentioned above. Prostate cancer should be treated with a multimodal therapy, not with pills and injections alone.

4. Yes, firmagon is enough for now. I am surprised this scan is scheduled, there should be no difference to the one done before.

5. If you add radiation plus a further hormonal agent after radiation your dad should live longer.

GP24

FormulaRob profile image
FormulaRob in reply to GP24

Thank you GP24,

So that link you put here mentions local radiation along with hormone treatment but it mentions they still see men typically die from metastasis prostate cancer at about 5 years unfortunately. I thought a lot of men here have been living a good quality life for over 5 years with metastasis disease. I am hoping that there was no further spread over 2 months since the last scan BUT I want to prepare for bad news just in case.. also my father is in need of some sort of hope here because 5 years is a tough pill to swallow

You mention you know patients who live 12 years with it so that part has me interested. Multimodal therapy I will research as well.

One-Eyed-Jack profile image
One-Eyed-Jack

Why would anyone replace their MO based on what they read here? This group has become a great source of amusement. Nothing wrong with a MO that's in their mid 30's. Most young MO's are very progressive, in tune with the latest medical data. Further they are mentored by senior members of faculty. Be careful, you might get what you're asking for. Lately, my MO isn't quite 40 and she is known worldwide for her work in prostate cancer.

FormulaRob profile image
FormulaRob in reply to One-Eyed-Jack

Hi Jack,

I say this because he says if the cancer on these upcoming CT and Bone scans come back with any more spread than there currently is (which currently is just one 10mm iilliac lymph node) then he would only have 3-5 years of life left but he can get him 5 years by doing very nonaggressive treatment and spread the treatments out further than normal to get him 5 years.

to me this scares me, i see people here with worse prognosis and seem to be acting fast and aggressively and they are past 5 years and seem to be living a good quality life still. We only have one shot at this and it sounds like this oncologist is not going to give my father the best odds of living 10+ years ?

One-Eyed-Jack profile image
One-Eyed-Jack in reply to FormulaRob

Quit listening to the survival data. Your thinking small when you hope for 5 years. Your father might very well be planning a Sunday dinner with you in 10 years. The easiest thing to do is go get a second opinion and ride with what you think is best. You have time, your father isn't going to deteriorate in 60 days. They told me I had 2, maybe 3 years. Presently my scans are clean, and my latest PSA was 0.008. Bottom line, you never can tell. Go see someone else and pick out what you think is best.

FormulaRob profile image
FormulaRob in reply to One-Eyed-Jack

Thank you my friend, and sorry I am coming across in any negative way. Father broke this new info to me yesterday and I am completely in a fog right now, feel like I have died inside myself and feel panicked to help him right now. I just want a team that will do everything they can to give him the best chance at a long life.

FormulaRob profile image
FormulaRob in reply to One-Eyed-Jack

I just read your bio for example.. 7 years ago you had quite the diagnosis but here you are talking to me and I hope to hear that you are still doing well with a good quality of life going! 950PSA and spread at time of diagnosis is a scary start to the journey but i find it amazing that i am here talking to you today. I want the same success for my father

Hi Rob - The first year of trying to pull all of the information was the hardest part for us. We had 3 different hospital systems opinions with the same recommendations as far as what to do. Good luck to you and your father. He will need a lot of daily support for the rest of his (hopefully long) life. Take one day at a time... My dear husband was dx at age 58 with advanced PC. 3.5 years with the disease and he's still working. God love him!

FormulaRob profile image
FormulaRob in reply to NotAlwaysSunshine

Hi there friend, I am sorry to hear what you guys are going through. 58 years old is so young. I feel so many emotions.. angy and sad.. and maybe even jealous of the people around me living their lives while we got hit with this nightmare. Seeing a loved one suffer is too painful.

I read your bio, I see your husbands treatments but do not see any radiation done? It is great to hear that he is still working 3.5 years later. Is he still physically strong? able to do everything he was before?? such as work around the house.. cut the grass , gardening.. whatever active hobbies he had before this diagnosis

Was he given a life expectancy as well?

if any questions are too personal you do not need to answer

NotAlwaysSunshine profile image
NotAlwaysSunshine in reply to FormulaRob

SBRT is radiation. It was a clinical trial. SBRT is 5 mega doses of radiation with a space oar. He did really well - no major issues. Yes - he has been able to do most of what he did in the past. Walking miles a day and playing golf, yard work etc... The life expectancy is a tough on because each guy is different. I'll say, he has surpassed what someone told him. Do not believe everything you read and hear. Live your lives!

GP24 profile image
GP24

There are different forms of metastatic prostate cancer which result in different prognosis. If you have just affected lymph nodes in the pelvis, this results in a good prognosis provided there are not too many of these. Then you can have affected lymph nodes outside the pelvis, then you can have a few bone metastases and you can have many bone metastases. Then there are visceral metastases which also have different prognosis. Lung metastases seem to have the best prognosis of the visceral metastases, liver metastases are worse. Your father has just one affected lymph node in the pelvis, detected with CT/bone scan, so the prognosis is better than having several bone mets. The five years are based on several bone mets.

The article mentions: "radiotherapy to the prostate improved overall survival by just over one-third (32%) in the 819 men with a low burden of metastatic disease. In contrast, overall survival was not improved with radiotherapy in the 1120 men with higher metastatic burden. Higher burden of disease in prostate cancer is defined as four or more bone metastases with at least one outside the axial skeleton and/or visceral metastases". Therefore your father has a low metastatic burden and get the radiation to improve his survival by 32% or more.

With multimodal therapy I mean not to rely on hormone therapy alone but add radiation and at a later stage nuclear medicine to the treatment.

FormulaRob profile image
FormulaRob in reply to GP24

Oh god this helps a lot.. thank you so much for this answer. Broke it down so well that even my panicked mind can comprehend this. Okay I am bringing this information to the appointment with us coming up with the Radiologist

Tall_Allen profile image
Tall_Allen

If he only has spread to pelvic lymph nodes (stage N1), it may still be cured. He should have 2 years of ADT+abiraterone with his whole pelvic IMRT. This explains why they must add 2 years of abiraterone:

ncbi.nlm.nih.gov/pmc/articl...

Or, add 96 weeks of darolutamide to whole pelvic radiation, which is available in about 20 sites in Canada in this randomized clinical trial:

clinicaltrials.gov/ct2/show...

They would give a boost dose to sites of known cancer.

However, he should have a PSMA PET/CT if it is available in Canada. That will enable him to rule out distant metastases and proceed with potentially curative therapy.

FormulaRob profile image
FormulaRob in reply to Tall_Allen

Thank you Allen. The PSMA PET Scan we are going to ask for on this next meeting. We do not understand why they don't mention it themselves unless it is not yet offered or if because his PSA is so high that they figure the standard scans would be enough to detect. But they came back clear first week of September which is only 2 months prior to his Firmagon treatment and from what digged up online, it usually takes about 3 months before aggressive cancer spreads further meaning his new scans should read about the same.

I am printing both of your links there with the two different approaches as well to present at the next meeting.

Our next meeting is with the radiologist. Is the appropriate person to present this info to or should it be with the oncologist only?

If new scans come back with spread I will ask what to do in that scenario but for now i will focus on dealing with it with no distant spread

Tall_Allen profile image
Tall_Allen in reply to FormulaRob

Canada may not have yet approved it for high risk. Good to have both a bone scan/CT and a PSMA PET/CT.

I hope you look into that clinical trial. It probably would use a different radiation oncologist. Are any of the sites close by?

FormulaRob profile image
FormulaRob in reply to Tall_Allen

Hi Allen just got off the phone with John Shearron from Prostate Cancer Research Instititue. He confirmed this PSMA scan not yet introduced in canada yet BUT we can cross the border for $3000.00 to get a PSMA scan.

Obstacles:

1. My dad got a firmagon shot already which will bring his PSA down FAST. so my dad would need to get this going asap as this scan requires PSA to be over 2. So to be sure, he will need a PSA etst just days before this scan so that they can be relatively sure that this test successfully scanned him with 95% accuracy

He also mentioned to act aggressive on treatment.. do not spread out treatments and act nonaggressive as we would just be giving the cancer a chance to grow.

This goes against what our current oncologist believes/told us so not so sure if we should present this info to him or see if we can get a second opinion somewhere else.

Also from your last comment it sounds like you think we should explore the second link over your first link in your original comment? We are willing to do anything that gives him the best chance at a long life

Tall_Allen profile image
Tall_Allen in reply to FormulaRob

ADT seems to increase PSA expression for about a month. So if he gets it soon, he should be OK.

If you live near a study site, the trial is good. If not, get abiraterone and whole pelvic radiation.

Seasid profile image
Seasid

When did they start Firmagon?

FormulaRob profile image
FormulaRob in reply to Seasid

Hi Seasid,

The started firmagon on Nov 10th 2022. His CT Scan and Bone scan came back clean other than one external lymph node. I’ve been told scans not likely to change from September till now but they will run it anyway. These scans don’t detect as much as a PSMA scan or PET scan but that is not available to us here in Canada. So there is a chance that small Mets could’ve been missed but let’s hope not

Seasid profile image
Seasid

I didn't have any scan for about 4 years after starting Firmagon injections.

When my PSA started to rise on my most recent scans (PSMA PET scan, CT scan, bone scan and FDG PET scan) i don't have any visible mets only cancer in my prostate and now that cancer in my prostate is undergoing SBRT (with MRI Linac) treatment.

The hopes are that I could continue with Firmagon injections alone after prostate radiation therapy.

FormulaRob profile image
FormulaRob in reply to Seasid

That sounds like a pretty good deal to me. I’m happy you’ve had so much success.

I am being told that because my fathers PSA is so high .. 226 at the time. That even tho the CT scan and Bone scan did not detect spread .. it most like is still spread: those scans don’t pick up as much as a PET scan which is why they think there is a high chance that it has spread

I pray to god that the high PSA is just a reflection of the large Tumor in his prostate rather than spread itself

Seasid profile image
Seasid in reply to FormulaRob

I really don't know, but you should have good doctors.

I don't know where are you getting treatments? I am reasonably happy where I am now. I could maybe move later to PeterMacCC in Melbourne, but at this very moment I am fine in my local hospital in Darlingurst. I can't complain.

If you know a better hospital maybe you could ask for second opinion there?

I wish you luck.

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