Dad Diagnosed w/Advanced Prostate Can... - Advanced Prostate...

Advanced Prostate Cancer

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Dad Diagnosed w/Advanced Prostate Cancer - PSA of 4800 - Question about biopsy?

Cew0303 profile image
80 Replies

Hello everyone! My name is Ashley and I set up an account here for my dad (60 years old) who has been recently diagnosed with advanced prostate cancer that has metastasized to the bones. I have been reading many of the posts on this website and have learned so much already. It has helped me reassure my dad and guide him through the process a bit. However, he refuses to research anything about his condition or read through posts on this site, so I am taking over for him because this seems like a really great community.

He had right groin pain for about a year that he assumed was from moving a large work table. We all thought it was a hernia. He saw two doctors who told him is was "muscle misalignment". He developed a large mass that protruded from the groin. Eventually, the pain got so bad that he had to go to the ER and after a CT scan, they told him he appeared to have cancer and bone lesions and needed to see an oncologist. (Looking back at his bloodwork, I can see he had very high alkaline phosphatase and his original doctors said nothing about it).

The oncologist confirmed that he likely had cancer, completed a PSA test, and it came back at 4800. She confirmed it is advanced and has spread to his bones. It has been extremely hard finding any other people with numbers that high. When I tell others, they often think I am mistaken or misread his chart, but it really is that high. We love the oncologist, but I can see she tries very hard not to scare my dad because she can see he is having a really hard time with this. He has always been afraid of health issues to the point where he avoided going to the doctor for regular check-ups/screenings, afraid they might find something. I mentioned his health anxiety to the doctor at the appt yesterday and she prescribed an anxiety pill for him, so I hope that helps.

Now my question - The doctor has already started him on the path of Triplet Therapy. He is taking Casodex (Bicalutamide) now and just had his first Firmagon injection yesterday. He is very tired and weak today. Eventually, he will start the Darolutamide pill and then chemo for 6 months. However, he has not yet had a biopsy - it is scheduled for tomorrow. I am wondering, what information will the biopsy give us and could the info possibly change the treatment plan? I plan to ask the doctor about this once he gets the results back, but I'd like to get info from people who have been through this before so I can get an initial understanding before hearing it from the doctor.

Also, if anyone has had a PSA this high or knows of others who have had a number that high, I would love to hear more about what it means (more aggressive? Maybe means he has had it for a long while?). The PSA is down to 3100 as of yesterday (after a week of Bicalutamide).

Thanks!

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Justfor_ profile image
Justfor_

35% PSA decline after one week is a typical response for Bicalutamide. I had 50% after 10 days. Re biopsy, is more kind of patient "passport identification" than any serious info source at his stage. Its a totally needless risk (read sepsis in 1 per 1000 to 2000 biopsies) when cancer has become visible on CT, yet very difficult to pass on it.

Cew0303 profile image
Cew0303 in reply toJustfor_

Wow, I had no idea about the sepsis, that's scary.

witantric profile image
witantric in reply toCew0303

I would second this. If biopsy is not needed, then don't do it. I have had three biopsies and didn't do well:-( Of course, everyone is different. The only reason I can think of is somatic genetic testing.

goodmaann profile image
goodmaann in reply towitantric

Second that. Especially if random. May be more useful to do a MRI or PSMA Pet/CT scan?

maley2711 profile image
maley2711 in reply toCew0303

A TRANSPERINEAL biopsy pretty much avoids the infection risk......which is actually 1-3% with the common TRUS biopsy......fortunately, actual sepsis MUCH lower than 1-3%. ended up with a catheter for a week after my TRUS biopsy.

There is no point to any test unless it can provide actionable result. Ask your Doc(s) what in the way of actionable result a biopsy could provide. Perhaps tissue for genomic testing would be a meaningful reply....ask. Otherwise, the biopsy will result in a Gleason score, but that is relatively meaningless at this time when your Dad is already proven metastatic.

Is your Dad having any urinary problems...frequency etc?

MoonRocket profile image
MoonRocket

The biopsy is sort of useless now except for genomic testing (tumour DNA). Your father has advanced prostate cancer so very little can be done with surgery or radiation now. The triplet therapy is the new Standard of Care for newly diagnosed metastatic patient.

A little lifestyle change is required:

1. Exercise. Cardio and resistance training is a absolute must.

2. Cut down on the carbs... diabetes can be an issue for some men. Add more vegetables.

3. Start a statin if not on one already

The other members will undoubtedly add more suggestions.

Best of luck.

Cew0303 profile image
Cew0303 in reply toMoonRocket

Thank you! I have been trying to get him to exercise more and he was doing well, but after the first injection yesterday, he seems to have no energy. Hoping that is temporary and he can get back to doing his walks!

MoonRocket profile image
MoonRocket in reply toCew0303

Very unlikely the injection is the reason he's tired now. It's probably depression and he should really consider getting on an anti-depressant.

Cew0303 profile image
Cew0303 in reply toMoonRocket

Yes, fortunately he started an anti-depression/anti-anxiety medication yesterday. The medication was supposed to help him sleep as well (he has not been sleeping much). Drowsiness is a side effect of the medication and although I didn't think it could affect him so quickly, perhaps it is the medication making him tired if it's not the injection.

MoonRocket profile image
MoonRocket in reply toCew0303

That makes more sense....the anti-depressant and anti-anxiety. After a good bought of exercise, he should experience a feeling of more energy.

I'm 58. Dx'd at 53. Don't have the luxury or the desire to retire so I am still working full-time. Diet and exercise is essential to feeling nearly normal and preventing the other SEs.

Bigtreeranch profile image
Bigtreeranch in reply toMoonRocket

Sorry fatigue is very real ….at least it is for me. I am doing triplet therapy

Teacherdude72 profile image
Teacherdude72 in reply toCew0303

Suggest that you join him in exercises, might even say you need his help getting into doing exercises. Him helping you not you helping him just might make him feel better.

Cew0303 profile image
Cew0303 in reply toTeacherdude72

That is an excellent idea! Thank you.

Teacherdude72 profile image
Teacherdude72 in reply toCew0303

You are very welcome.

MJCA profile image
MJCA

Hi,

You’re a good son to help pick up the slack. The biopsy will take a number of samples from the prostate. The biopsies will be analyzed to determine the type of cancer (such as adenocarcinoma) your Dad has as well as the number of samples (called cores) that are malignant. They will assign a Gleason score normally in the format of a + b. The total score is what’s important. The Gleason is anywhere between 1 - 10. The Gleason score indicates how agressive the cancer is. The higher the Gleason score, the more aggressive the cancer. I hope this helps. Normally doctors will obtain a PSA starting around age 50. I guess this was not done due to your Father’s anxiety and not going to the doctor. I hope this helps. We are here for you.

Cew0303 profile image
Cew0303 in reply toMJCA

Thank you very much, this is so helpful!

NanoMRI profile image
NanoMRI

I do not face the PSA numbers nor the volume of spread your father does - all the best.

Over my ten years with this best and currently, I seek as much investigative information as possible and IMO recognize the many disparities we face on investigative and treatment methods, and strongly self-advocate based on my objectives. However one thinks of standard of care, it is a very broad spectrum ranging from suboptimal to over the top.

I have had two biopsies, no difficulties. They provide definitive confirmation of the cancer (not quite there yet with imaging alone) and as mentioned, genomic and genetic information I have found useful. Liquid blood biopsies and multiple imaging methods provide further information and I find these very useful.

If one is going to accept their doctors recommendation for drug therapy as primary treatment, perhaps all this additional information is not useful. A less common path I have taken is to reduce tumor burden with two surgeries and radiation. Despite all my efforts as a strong self-advocate if I could have do-overs, I would do things differently. I say this because in my experiences this is a very difficult beast and again we face many disparities. Hope this helps.

Tinkudi profile image
Tinkudi

I am here for my father who is 83 and was diagnosed with bone mets . Tall_Allen from this board, who is extremely knowledgeable, advised against biopsy as it would not change treatment plan and hence was unnecessary. Unfortunately the doctors where I am refused to treat without biopsy and so dad had to do it. There is controversy about it spreading cancer.

If you have a choice not to do it , I would say , don’t do it. If needed later at some stage - it can be done later from the metastases.

Conlig1940 profile image
Conlig1940 in reply toTinkudi

Tinkuudi,

Tall_Allen is " NOT A PHYSICIAL " and should not be giving medical advice .-- PERIOD .

This forum is intended to direct other members to PROFESSIONAL MEDICAL PRACTIONERS , based on their personal experiences. All our prostate cancer issues , although similar , are different . We do not know the family history of the patient nor their personal history and medication profiles .

For professional guidance buy Dr. Patrick Walsh's book - Guide to Surviving Prostate Cancer

Educate yourself . It will be the best money you ever spent . Finally - Consult with your Urologist - A Biopsy DOES NOT SPREAD CANCER .

If you go for a Biopsy - have a Transperineal MRI Fusion Biopsy NOT a Transrectal Biopsy for obvious reasons -- less chance of infection .

Good Luck .

RazorSaw profile image
RazorSaw in reply toConlig1940

I totally agree with you that the Dr. Patrick Welsh book is an absolute necessity. I bought a copy several days ago and I find it comprehensive and now in the 5th edition, published in 2023, it has very current information. So Ashley find this book and buy it for yourself. It will help you a lot.

I'm sorry to hear about your dad because that is very advanced cancer. My numbers are just 35, but I'm still scared about what my MRI and biopsy will show in the next several months.

People in this forum are spectacular.

Tinkudi profile image
Tinkudi in reply toConlig1940

Hi Conlig ,

I don’t know if Tall Allen is a doctor or not but he sure knows a hell of a lot it seems 😊

Nusch profile image
Nusch

My PSA was 2.222, pls check my bio. In difference to your father CT and bone scan didn’t show any mets but tumor was out of prostate. Triplet therapy wasn’t available by then but I had ADT, chemo, surgery and radiation. Today, my PSA is undetectable, even survived another cancer and feeling well. So high PSA alone is not the only marker. My doctor has seen patients with PSA less 5 who died after 6 months. For me it’s now almost seven years and I look with optimism in the future.

I changed my life by 180 degrees, if you want to know more, I’m here.

Cew0303 profile image
Cew0303 in reply toNusch

Wow, I'm so happy for you, sounds like you're doing great! And yes, if you have more info to share about how you changed your life, I would definitely be happy to hear about it.

Nusch profile image
Nusch in reply toCew0303

I changed my diet to a whole food plant based diet plus some fish. I avoid sugar wherever possible and stopped alcohol. I’m jogging daily and every second day I do weight lifting. I mediate from time to time, stopped all stress activities and look for 7-8 hours sleep. These are the main changes which also led me to a very satisfied life, enjoying avery day.

Pjford profile image
Pjford in reply toNusch

I’d love 7 to 8 hours of sleep, but I’m on Abberaterone /prednisone/ Lupron so lucky to get 4 to 5 hours at night . I try to make it up with a nap in daytime

Nusch profile image
Nusch in reply toPjford

I suffered as well. Often, when I woke up in the night, I didn’t trust to fall asleep again and started to read or got up. Nowadays I still wake up multiple times in the night, mostly around 3 and then at 5 again. But now I stay calm and wait for the sleep to come back. And almost every night this works out. I followed some sleep programs which helped me a lot.

Gaden profile image
Gaden

First, you are doing the right thing for your father by seeking input from people online who have direct personal experience with prostate cancer (PC). There is a wealth of information out there but medical professionals of all kinds strong tend to rely exclusive on Standard of Care (SOC) for a variety of reasons which can overlook potential options that can positively impact quality of life or even treatment efficacy.

The single most important step to take right now is to ensure your father's oncologist orders a DNA test on the biopsy material. That will tell medical professionals volumes about your father's specific cancer and will inform them about treatment options' likelihood of success. For example, it will tell you whether or not his cancer is likely to respond to androgen deprivation therapy (ADT) that he is on currently.

Personally, I am following an ADT program prescribed by my medical oncologist (MO) and urologist but also an adjunctive therapy developed by Leading Edge Clinic involving a mix of repurposed medications and supplements found to have specific anti-cancer properties. I will put links to them below (which I strongly suspect you will explore, given your love of your father and your proactive role in his care.) The interview with Dr. Kathleen Ruddy (a cancer surgeon) is particularly encouraging, which I like. These are not miracle cures, although for some they appear to have been. But every bit of damage we can do to the cancer cells that want to take over our bodies, the better traditional treatments can do their jobs. Don't hesitate to ask any questions you have. Everyone on this site is here to help each other.

Dr. Kathleen Ruddy interview:

youtube.com/watch?v=7xWi1ik...

Leading Edge Clinic link:

covid19criticalcare.com/stu...

Leading Edge Cancer Care protocol book (downloadable):

covid19criticalcare.com/rev...

Cew0303 profile image
Cew0303 in reply toGaden

Thanks for the video link! I have already watched about half of it and it's very interesting. Will watch the rest of it after work today.

Tinkudi profile image
Tinkudi in reply toGaden

What all are you taking from the alternate protocol. I am in India and ivermectin is available easily here

85745 profile image
85745 in reply toGaden

Yes this is a great interview I also posted a comment or reply on Dr. Kathleen Ruddy . started taking Ivermectin and mebendazole myself - no problems

StayPositive1 profile image
StayPositive1

Try not to trip on the PSA number. I was just a shade under 2,000 six years ago with bone and lymph mets. They took my biopsy from nodes above chest…said it would be good for future comparisons? The meds are awful, but I’ve been on vacation for last 18 months. Best of luck!

gsun profile image
gsun in reply toStayPositive1

Could you fill out your bio? Interested in your story.

Gaden profile image
Gaden

great to hear you have been on holiday for 18 months! Hopefully it will go for several more 18 month periods.

Tall_Allen profile image
Tall_Allen

You are absolutely right that there is no need for a biopsy. They cannot learn anything useful from it. It is a totally unnecessary procedure, it is often painful, and it will only spread his cancer. If you can, cancel it and fire whatever doctor ordered it. Triplet is exactly the right thing to do.

I have known patients with PSAs over 10,000. Some PCa puts out more PSA, some less. The high PSA subtypes that respond well to medicines have a good prognosis.

Gaden profile image
Gaden in reply toTall_Allen

I agree that there is no reason for the pain and disruption of repeat biopsies but getting one is a necessary (albeit unpleasant) step to enable assessment of the DNA which provides extremely important information for planning treatment. As time goes on and even more tailored treatments become available, the DNA data will enable patients with the information on record to benefit.

witantric profile image
witantric in reply toGaden

Somatic genetic testing is only needed for later treatments. If triplet therapy is effective, this might not be needed for years.

Tall_Allen profile image
Tall_Allen in reply toGaden

Only the DNA mutations of metastases matter. Mutations accumulate over time, so metastases, which come later than prostate mutations, are the only thing that matters for tailoring treatment down the road.

Cew0303 profile image
Cew0303 in reply toTall_Allen

So they are taking a biopsy of the bone. Is that different? They are not taking it from the prostate.

Tall_Allen profile image
Tall_Allen in reply toCew0303

Yes - very different. They are looking to identify the type of PCa and any actionable genomic mutations.

Cew0303 profile image
Cew0303 in reply toTall_Allen

Ah ok, good to know! Thank you!

Brendan1904 profile image
Brendan1904 in reply toTall_Allen

Hi TA, keep up the good work. If it were not for you I would have left long ago. As far as this biopsy I would understand it to be of the prostate so they have samples from date of diagnosis. When I was diagnosed they told me no question and biopsy wasn't necessary but if any suitable trials came up at a later stage I would almost certainly be excluded if I hadn't had a biopsy at outset. I was happy to proceed even though now nearly 4 years on I am starting to run out of options and don't foresee any suitable trials coming up. My main concern is working with the palliative team to manage pain, stay active and stay out of hospital as much as possible. The oncologist still has some options and is assessing progress of cancer in all bones to check viability and suitability. Keep people on track as best you can with your expertise. There are too many who think statistics are useful just to back up their arguments rather than understand that well researched blind controlled trials give independent mathematical results that can be very useful to those who understand them.Once again thanks for all your input and I only wish people told you more often how much they benefit from it.

Tall_Allen profile image
Tall_Allen in reply toBrendan1904

"There are too many who think statistics are useful just to back up their arguments rather than understand that well researched blind controlled trials give independent mathematical results that can be very useful to those who understand them." I wish everyone understood that!

The OP clarified that it is a bone biopsy, not a prostate biopsy.

Brendan1904 profile image
Brendan1904 in reply toTall_Allen

Your response makes complete sense then. The original wording certainly misled me. Thanks for letting me know.

Desanthony profile image
Desanthony

Your Dad is lucky to have such a caring son. I hope everything goes well for him.

My Brother-in-Law often had PSA in this region during his 15 years living with Advanced Prostate Cancer which also had got into his bones, spine, and further. The Hormone Treatment (HT) will cause a few side effects to a greater or lesser degree and of course your Dad will not necessarily get all of them and some may be mild and some not so mild. Fatigue, weight gain and hot flushes and becoming emotional seem to be the main ones. All are helped by exercise. During my time on HT I only put on about 5lbs and managed to avoid too much fatigue by continuing to exercise at the gym as I had prior to diagnosis. I didn't actually notice that I had had hot flushes until the HT finished and then I noticed them as they were wearing off over the 9 months or so after ceasing HT. Medication is available if the Hot flushes are really bad so ask for medication if they are unbearable. I won't say I didn't get fatigue but managed to get through it - even if it was just going for a walk in the fresh air its better than sitting down and watching TV when you are likely to fall asleep and then feel even more fatigued and then become unable to sleep at night which causes a roll on effect. If I sat down after lunch I probably would fall asleep but my wife would give me an hour and then wake me up - at night I often nodded off in front of the TV but as long as it was around 9 my wife would let me sleep and wake me up to go to bed at 10!

All the very best to you and your Dad and all your family.

Cew0303 profile image
Cew0303 in reply toDesanthony

Thank you for the response! That’s exactly how my dad usually spends his days since retirement - on the couch in front of the tv. He has been feeling lousy for the past 24 hours which I think is from his new anxiety medication and also his general anxiety about his diagnosis. It is hard to distinguish between his physical and mental symptoms at times, but I am going to keep encouraging him to go on walks with me and my kids.

GP24 profile image
GP24

Bicalutamide before and during Firmagon is useless. Your oncologist should know that. I would see a different oncologist.

Cew0303 profile image
Cew0303 in reply toGP24

I should have clarified - the Bicalutamide was started before we decided on a triplet therapy, so he won't be continuing it. He will be taking Darolutamide from now on along with the Firmagon injections and then chemo.

Soton4ever profile image
Soton4ever

I don't have any advice, but I see alot of people do, wish I knew about this forum when my dad got PC too.Anyway, I just wanted to say that it's such a good thing that you're looking out for your father and doing researh 😊

He is lucky to have you, and I wish you both the best of luck on this journey 🫶

Tinuriel profile image
Tinuriel in reply toSoton4ever

Ditto that. I'm here because my husband would find the wash of info overwhelming, and it's part of how I'm caring for him. This is an amazing forum with good information. You're in the right place.

God_Loves_Me profile image
God_Loves_Me

only one suggestions - Listen to Tall_Allen

Conlig1940 profile image
Conlig1940 in reply toGod_Loves_Me

BAD ADVICE - Tall_Allen is NOT a Qualified Physician .

All our cancers are different . Rule # 1 Never attempt to treat a patient you have never met or know their family and personal health histories , which obviously includes their current medications .

Collen Young will agree with my advice . Other members should not be giving medical advice

This is not the purpose of this forum .

gsun profile image
gsun in reply toConlig1940

TA probably knows more than most oncologists.

NanoMRI profile image
NanoMRI in reply toConlig1940

until recently there was a HU guideline to speak from one's own experiences. IMO, the removal of this guideline will result in HU becoming more like FB and other similar groups.

VanHalen84 profile image
VanHalen84 in reply toConlig1940

TA provides incredible expertise to many of us on this site, much better than most of the physicians I've been treated by. Most physicians have 15 minutes to discuss options and then on to the next patient. My current MO is great and knows his stuff and spends time with me but others did not. I saw you have only been a member for a few weeks. I'd recommend you read more of his posts and understand the complexities of this disease before attempting to shut down the person who provides so much knowledge to so many of us.

NanoMRI profile image
NanoMRI in reply toVanHalen84

"expertise" or non-medically trained and no personal experience opinions? There is enough public material for any of us to be right at least some of the time; but much better than practicing physicians? Mastering the mimicking of scientific writing is not experience and expertise.

London441 profile image
London441 in reply toConlig1940

Caveat Emptor of sorts:

Anyone on this forum telling you that someone else on it gives bad advice, with the need for all caps, has a personal problem which should be taken into consideration.

Particularly if that someone has a considerable depth and breadth of knowledge specific to this disease, even if it is sometimes accompanied by what some would claim is a strident manner.

There are many of us who can testify that Tall Allen’s navigation saved us from some misguided or poor ‘professional’ care. He also has hard data to back up his words, and interprets that data expertly.

Yes some of us disagree with him at times, I have. He is an invaluable resource here regardless.

Alicat1 profile image
Alicat1

I was diagnosed in 2017 PSA 425.....went on Lupron injections then stopped for 2 years PSA came up to 2700. Back on Lupron

TomsD1 profile image
TomsD1

High PSA is a 'behaviour' for some cancers. It is really helpful for my own Dad to see that there are other high numbers out there. Also to know that the liquid radiation treatments mostly work better for people with 'expressive' cancer. And you would think that they are somehow predictive....it just doesn't appear to work like that. Remind him that statistics start with removing the outliers so not to take anything he reads personally. Accept the diagnosis but not the prognosis! Take control - exercise, plant based diet, meditation, supplements- it is so hard tho, so he needs love and laughter as well. We all switched to plant based eating with my Dad btw & this active support has really helped him know how much we wanted him to fight. I recommend the plant based cooking show for recipes. Anxiety and depression and isolation are real threats too. So my Dad had Mets at diagnosis, high PSA etc. - battling again now but beating it back 8 years later.

Skoda1 profile image
Skoda1

Hi,

No advice from me except don't panic. I also had 'failure to diagnose' and then found my PSA was just under 4,000. I did have a biopsy (not asked, it was just arranged - NHS in UK). The oncologist thought that it wasn't worth treating. That was 2 years ago. The treatment was just as you describe for your father and my last PSA was 28. I feel well most days.

Best wishes for your father and good for you in getting advice and giving real support.

street-air profile image
street-air

there is a zoom forum for him that meets weekly I think if he wants and they are very good at double checking plans, and suggesting doctors and centers of excellence based on your location. go to ancan.org and consider joining the appropriate group

gsun profile image
gsun in reply tostreet-air

If your can put up with the moderators on that forum. No soup for you!

Brendan1904 profile image
Brendan1904

Hello, a response not sure if helps. Diagnosed in March 2021 with PSA of 3300 and lytic lesions in all bones. Had biopsy as oncologist explained would be a requirement if any appropriate trials came up. Triplet therapy has evolved since so I was only on Xtandi for 2.5 years. Ignored side effects and enjoyed life. Saved fortune on heating in winter. My PSA never got below 30+. So ignored people concerned about rising PSA in decimal or single digits. I went to oncologist on basis I did not take pills for anything and kept away from doctors. Only went for first tests because felt recovered enough to see a doctor. Oncologist told me I was at wrong place. My wife was not happy so I quickly had to make decision and confirm that I would go with any recommendations and take all pills as we agreed between us according to his instructions. I was given choice of chemo or Xtandi and with all COVID problems went for Xtandi. 3 monthly blood tests and phone calls from Pharmacy at hospital was great. Got blood pressure monitor and thermometer at home, so kept check for them and avoided "white coat" syndrome of high blood pressure readings.Let your father come to terms with shock diagnosis and important he tries to carry on knowing his diagnosis, fits in with treatment but has a good life ignoring it most of time. If his PSA gets below 100 and stabilises for a while then he will already hopefully be much improved.

Good luck and try not to worry too much. Research cautiously but well. It is easy to get led astray here and elsewhere on the internet.

Cew0303 profile image
Cew0303 in reply toBrendan1904

Thank you for your kind words. He is definitely still in shock and as much as I understand how terrified he must be, I really want him to keep living instead of just thinking he is at the end of his life. I have put myself on the email list for 2 local support groups and will try to encourage him to go. He says he doesn't need anything like that because he has me, but I am not going through this and there are others who are who could be even more valuable supporters for him.

Retireddoc profile image
Retireddoc

Greetings. Your father is lucky to have such a caring son. It sounds like he is depressed and overwhelmed with his diagnosis which is a typical response. His physicians can treat the depression. Having a therapist to take with about his fears may help as well.

I would caution you against directing your father's care based on the well intentioned advice of laymen on this site for several reasons. They are not physicians/oncologists and have never treated patients. They do not know all of the details of your father's History and Physical, past medical history, labs etc-all of which may be relevant to his treatment protocols. Many on here have an inherent bias towards or against a particular treatment, sometimes based on personal experience-anecdotal evidence which is not helpful in another particular case.

I have prostate cancer with one known metastasis to bone, T8, and one pelvic lymph node by PSMA PET Imaging. Those are just the metastases we can see, there are additional micro metastases present below the resolution of Imaging studies. I underwent triple therapy at Johns Hopkins and have had radiation treatment to T8, the solitary lymph node and my pelvis. My PSA rapidly became undetectable almost 2 years ago and remains so. My ADT (Lupron) was discontinued after one year.

I am a retired Interventional Radiologist who also interpreted Imaging (MRI, PET, CT etc) for more than 40 years. I have done thousands of biopsies of virtually all organs, bones and tissues in the body. Although it is theoretically possible to spread cancer by biopsy, it is rare and unlikely. The theory is the cancer cells are deposited along the needle track or the needle disrupts small blood vessels in the tumor and allows the cells to enter the circulation. In reality, it is very difficult for cells or small clumps of cells to survive outside the tumor itself. They no longer have access to blood supply/nutrients and/or are damaged and rapidly die. The vast majority of tumor cells that enter the blood circulation die from the disruption from the "mothership", turbulence in the blood circulation or simply do not thrive when they are "deposited" somewhere in the body. The immune system destroys many of these cells as well.

Any biopsy or surgery of any type entails some risk but, in general, I quoted a potential complication rate of <2% to my patients. Bleeding, infection and some complications specific to the area biopsied (a pneumothorax for instance with a lung biopsy) are all possible and occasionally occur, but the vast majority are easily treated with no lasting side effects. Your medical oncologist likely has a good reason for wanting the biopsy-ask.

I am not here to offer any medical advise and neither should anyone else on this site. It is dangerous to do so. My advise to you is to carefully select a highly experienced, knowledgeable, well-trained medical oncologist (preferably at a Center of Excellence) and follow their advise. From what little you have posted it sounds like your oncologist is aggressive and taking good care of your father.

It is a difficult and long journey. The initial treatment is daunting but once done things settle down for a while. The researchers and oncologists have made tremendous strides over the last decade in treating prostate cancer. There are numerous trials ongoing and new treatments and protocols will be published and instituted into SOC yearly. No one knows about your father's individual case. There are men that have lived decades with metastatic disease.

Keep the faith and good luck to you.

Cew0303 profile image
Cew0303 in reply toRetireddoc

Thank you so much for your kind words! Very reassuring to hear things will settle down.

Vynbal profile image
Vynbal

I am in a zoom support group where there is a young man - diagnosed in his 50's when he went to the ER with back pain. A swollen lymph node in his neck was biopsies showing metastatised PCa and his blood sample needed to be diluted to measure his PSA. It was estimated between 11000 and 12000.He had a moderate response to docetaxel, but then an excellent response to cabazitaxel.

He recently passed the 5 year mark (I believe). While he has health challenges due to living without testosterone, his PSA remains undetectable. He is a great inspiration to our support group.

SavingPops profile image
SavingPops in reply toVynbal

My father who is now 63 years old- his PSA shot up drastically after Lupron and Casodex failed after 2 years. His final PSA before chemo was 10,800. After only 2 chemo infusion of docetaxel (at a lower dose) his PSA is 100, and probably lower now until next blood work.

Original PSA when diagnosed in 2022 was 84, stage 4 with bone mets. Lowest it was at was 23 and then began going up.

Conlig1940 profile image
Conlig1940

My brother-in-laws Stage 4 prostate cancer was detected from his high Alkaline Phosphatase reading .

I recommend purchasing Dr. Patrick Walsh's book " Guide to Surviving Prostate Cancer " and educate yourself.

MOST IMPORTANTLY : Do not take medical advice directly from other members on this site . We are ALL laymen and have similar stories . All our cancers although similar -- are unique and different . NO PROFESSIONAL DOCTOR would suggest a treatment when never having met the patient or knowing their family and personal medical history .

We have no clue of any additional health issues they may have had or currently have plus other meds they may be on .

Medical advice from laymen --- as you will meet on this forum IS DANGEROUS .

We are here to direct you to the experts in the field of Prostate Cancer and Centers of Excellence for treatment as directed by your Tumor Board .

WhatHump profile image
WhatHump

I wish I’d found this Forum and Tall Allen before making the treatment decisions my three PHYSICIANS advised. They meant well, but were several years behind the curve, and of course the surgeon had his own biases.

I have degrees in Engineering and 43 successful years in the Financial markets. What separates the excellent from the pedestrian is rigorousness. TA is highly rigorous, logical, objective and good faith. I would take his opinion over anyone else. Ignore his critic.

lcfcpolo profile image
lcfcpolo

Hi. Sorry that you find yourself here and well done for supporting your Dad. I was diagnosed over 4 years ago, PSA was 1311. Interestingly I also had mucho pain in my right groin area before diagnosis. At the time I put this down to not warming up properly before a run. So whilst my PSA was not as high as your Dads, there is some hope. Your Dad is being offered the new gold standard of care with the triplet therapy. Things do move in the advanced prostate cancer world as I was offered just quarterly Lupron injections, 4 weeks of Bicalutamide and then daily Enzalutamide (Xtandi) tablets. My last PSA was<0.03. I'm in the UK and they said no biopsy needed following the scan. There is a business in the USA called color.com They will check for some DNA mutations from a saliva test. Good luck to your family.

j-o-h-n profile image
j-o-h-n

Your Dad is not an exception. Most men dislike going to doctors or reading about medical issues and advice. (pssst we are mostly babies). So you will have to be his advocate when it comes to being treated for any of his maladies..... Keep posting here!!!

Good Luck, Good Health and Good Humor.

j-o-h-n

chipspesto profile image
chipspesto

In January 2022 my PSA was 3300. Triplet therapy until June 2023 decreased PSA to 63.

July 2023 started Pluvicto at Duke Cancer center, completed six treatments Feb 2024. PSA now at .2

Weakness will have to be tolerated,as well as bone pain.

A well thought out Mediterranean diet might help, as well as exercise.

Your dad is lucky to have you.

Best to you

gsun profile image
gsun

You said he is starting ADT well before chemo. i thought chemo would be done either first or at the same time ADT is started as chemo works best with rapidly dividing cancer cells.

Spinel_Cutter profile image
Spinel_Cutter

There is an on-line support group called “reluctant brotherhood,” and a few fellows there have mentioned PSAs in the thousands. Some tumors (most, I think) produce PSA, but not all. Very high PSA equates to a higher risk tumor. The “higher-risk” is risk of mets, not risk of “death,” though often they may be synonymous.

I’d say right off that IMHO trans-rectal prostate biopsy is likely to be replaced by what I suspect will be standard-of-care by perineal prostate biopsy. For me the risk of infection (sepsis) by the trans-rectal route was unacceptable. So, I left my urologist and sought another who did tran-peritoneal. It was done at day-surgery, they put me out (I think for 11 minutes). Flawless and so very non-traumatic. No blood in urine but + in semen from ejaculation for a few weeks. I would suggest looking for a doc/place that does trans-peritoneal. Beware, I would only consider anesthetized, not local anesthesia (nerve block). IMHO only, always rely upon your specialist.

Your question: The cells can define the type of cancer(s) (there can be multiple tumors of different grades). The cells can be used for the Decipher genetic test which “scores” aggressiveness. Though, I admit, will that be useful? It’s already proven aggressive. Still, different genetic variations can act very differently to different methodologies. For instance, if a person has a “type” that is genetically predisposed to an immunotherapy methodology, that might be very, very helpful.

Prostate cancer care is changing very, very quickly. PSMA-pet scans just came on the scene a few years ago. In upcoming years, especially (I think) AI is likely to do what the Decipher test does, but not by assessing ~20 genes, perhaps by hundreds, giving possibly more targeted and effective treatments.

“Dad,” is young… a mere 60. I personally think that in a few years, there will be more and more “targeted” treatment available. Cancer is not one “animal,” it hundreds and each has its strengths and weaknesses, right now, and in the coming decade—those “weaknesses,” will become more identifiable (on a molecular level) creating more effective treatments.

“Summary: The transperineal approach to biopsy is increasingly used because of lower associated sepsis rates. Our review of the recent literature supports this practice pattern change. Hence, transperineal biopsy should be offered as an option to all men.”

See: Transperineal vs. transrectal biopsy to reduce postinterventional sepsis

pubmed.ncbi.nlm.nih.gov/368...

RazorSaw profile image
RazorSaw

Ashley, one thing you will learn in the book that has been recommended twice here, the Dr. Patrick Walsh title, is that prostate cancer is quite an individualized disease. It really can present in many ways and start along different pathways. There are no perfect diagnostic tools and there are no simple plans of care. From my perspective, the one thing that I am certain of is that early screening is the best method of preventing and defeating the cancer. Unfortunately, in my case, My healthcare provider just kind of dropped the ball and I went 17 years without a PSA level.

So now at the age of 68 and feeling as if I have done everything right to maintain my health, I am surprised with a PSA of 35 and a free PSA percentage of seven. When I went for a second opinion at Mayo clinic, they inform me that I will certainly be a candidate for biopsy after my MRI.

I've only been on this site for several weeks and I deeply appreciate the concern and the expression from experience that many people offer here. It's invaluable.

One thing I would like to see more of is how people approach end-of-life care. We have 10 states in the Union that legalize medically assisted dying. I wish this was more common. I'm saying this because I've heard some horrific stories about what it's like to die with castration resistant metastatic prostate cancer.

Professorgary profile image
Professorgary in reply toRazorSaw

To my knowledge Oregon is the only state that will allow a nonresident to “die with dignity”. I think it was March of last year that the Oregon Supreme Court ruled on the issue.

RazorSaw profile image
RazorSaw in reply toProfessorgary

The nine other states with MAD may have residency requirements. I don't know. But the compassion and choices website is a good source of info.

Professorgary profile image
Professorgary

Hope this gives you some hope. I was on crutches before treatment with Mets to nodes, bones and lungs. Now I hunt, fish and keep after my wife’s Honey Do list. God bless!

A picture is worth a thousand words!
Cew0303 profile image
Cew0303 in reply toProfessorgary

This is so great to see and gives me so much hope! Thank you so much for sharing.

For your interest - The highest ever recorded PSA level for PC is 23,162.

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

I wish you and your Dad all the very best. Stay positive and make the most of each day as it comes.

You'll hear a lot about Quality of Life (QoL) and Side Effects (SE's), but remember, the greatest challenges can often be anxiety and lack of motivation. The good news is that these are the very things we can tackle by resetting our focus and mindset.

Take it one day at a time, with a smile and a spring in your step.

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