Between a rock and a hard place - Advanced Prostate...

Advanced Prostate Cancer

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Between a rock and a hard place

Sanctus profile image
30 Replies

I am 67 years old and ver healthy. However, I was recently diagnosed with PCa . My Gleason score is 9 in one sample and 7 in the other two samples from the 12 samples taken from my prostate. My PSA is 23.7, and pet scan indicates no met so far. My urologist advises that I see both MO and radiologist and make a decision as to what path I would take for my treatment moving forward. I have consumed a ton of literature on the subject, but I am more confused than when I started.

Can any body tell me whether this thing is curable? I started Lupron a week ago. My inclination is to go for ADT , second generation agents, which appear now to be associated with high cardiovascular events. Is radiation a better option? Please chime in for a wealth of advice.

Sanctus

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Magnus1964 profile image
Magnus1964

Having started Lupron, you could wait and see how well you respond. In the meantime, see a radiologist.

We do not use the word "cure." The best you can do is place the cancer into remission.

MrG68 profile image
MrG68

I personally wouldn’t use the term ‘cure’. Everyone one has cancer cells, without exception. It’s part of your design. You can’t ‘cure’ that. The only thing capable of targeting cancer cells discriminately is your immune system.I prefer to look at it as your body is in a state where there cancer cells you have been allowed to progress. That being said, there are people on this site who have done treatments and have a stable low psa for years who regard themselves as ‘cured’. Doesn’t mean they don’t have cancer cells, just that it’s back under control. Good for them and hope for others.

Something you should be thoughtful about is, if you live long enough, you’re going to get some form of prostate cancer. People usually die of something else. A huge factor is how aggressive the cancer is.

You’re 67. My approach would probably be to look at the treatments that kick the can down the road and slow the cancer down as opposed to think about cures.

There’s a lot of information from well educated people on this site with this field who will advise you exactly how to do that. I would suggest you read their suggestions and discuss it with your medical team and then post again with what they discussed if you feel you need help. You have the power to decide ultimately - no one else. You can be overwhelmed with terminology and people on this site will explain it to levels you can understand. I strongly suggest you do not just go with anything without understanding what’s involved and what the risks and benefits are. Again, people here will help you with that.

Hope that helps.

London441 profile image
London441 in reply to MrG68

I see a lot on here about not using the word ‘cure’. A good deal of paternal-style explanation about why ‘we’ don’t use the term.

Yet Tall Allen, the most revered and trusted member of this site, uses it all the time. Dr Mark Scholz, a pillar in the Pca world, also uses it freely where he deems appropriate. So which is it?

I understand completely that cancer can hide in senescence for years etc, but the participants here have widely varying stages and aspects of disease and it seems simplistic to just assign all of them as incurable.

I don’t think it’s splitting hairs to make a distinction between different stages and volume of pca , even in the ‘advanced’ setting, when deciding to use the cure word. But I do not claim to know.

At the end of the day I suppose it makes no difference-no man should ever assume he is riding off into the sunset once treated. Yet it’s interesting that there is zero consensus on the ‘C’ word.

MrG68 profile image
MrG68 in reply to London441

Well, like I said previously, everyone has cancer cells. It’s part of your design, so much so that your immune system will kill these cells discriminately. Once that is done, you’ll have have more cancer cells. IMO the use the word ‘cure’ for something you’re always going to have isn’t something I’d personally use. I believe that a lot of people view cancer as some foreign substance that’s taken a hold in their body and they need to eradicate it. It’s your actual body that’s made the cancer it is part of you. The way I see it, it’s more like the cancerous cells have been allowed to proliferate due to the conditions being right for it to do that. That’s not to say surgery etc doesn’t have benefits.

Have a look for prostate cancer cure rates. Can you find them? You’ll probably get directed to prostate cancer ‘survival’ rates. These are rates of people who, as is implied, have survived for a number of years.

There are people who have received treatments who have low psa values and that are stable. They consider themselves as ‘cured’. I don’t have any issue with that because from their perspective they see ‘cured’ as being in a state where a life threatening cancerous condition they had has been changed to one that isn’t threatening any more. That’s not a guarantee of anything though.

So, like I said previously, this isn’t a term I’d use personally.

As for the original post, this is a man who is 67 years old. If I was in his situation I would be looking at managing it as opposed to having the view of ‘cure’. I would weigh up the risks of the treatments. The route of eradicating his cancer might carry more risks for something which he should be able to manage. That could be changes in lifestyle, diet, exercise, SOC, drugs - whatever he decides is best for him.

Just my opinion, I’m sure that others disagree.

London441 profile image
London441 in reply to MrG68

Sure, the cancer is our own selves gone mad, I do understand. From such a specific a definition no actual cure is possible. As Warren Zevon said, ‘Life’ll Kill Ya’, even if he was speaking more generally.

Perhaps successfully arrest of rapidly dividing renegade cells long term is the definition of ‘cure’ by any worthwhile standard. If my Pca returns when I’m 96 and wake each day wishing I was dying of anything at all (which of course happens), will I care?

Odds. Odds are anywhere from excellent to non existent for cure, long remission, whatever. They do vary wildly, and are changing as medicine advances. this we know.

If asked the question, I like to say ‘I’m cured until I’m not’. People seem to be confused and totally get it simultaneously.

j-o-h-n profile image
j-o-h-n in reply to MrG68

Well MrG68........I'm in your corner.......

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 07/14/2022 7:34 PM DST

in reply to London441

. No cure for #4 ..

London441 profile image
London441 in reply to

I’m sorry that reasoning is equivalent to a conspiracy theory

LearnAll profile image
LearnAll

Out of 12 cores, two have Gleason 7 and only 1 has Gleason 9...so overall its a milder form of PCa and you do not have any mets. In such a situation the risk of overtreatment is as big as undertreatment. Like what Magnus said that you can wait 2 or 3 months and see how low Lupron takes your PSA. If it drops below 1 then, that verifies that you are likely to live long. And later, if needed you can add more treatments. Nothing happens overnight in PCa..its usually a slow moving turtle. (except in rare aggressive variants)My Definition of Cure in PCa world is "if we can live how long an average American man lives..I am fine calling it "cure" Average Age of an American man is about 78 years. More than 78 yrs is a bonus.

Fred312 profile image
Fred312

Lots to consider. Cure...perhaps. The scan, was it PSMA PET Scan? If not you should try to get one. It's much more sensitive than conventional bone scan that you probably had, for looking for mets. The standard, sometimes curative, treatment for higher grades that hasn't metastasized is brachy(seeds) plus external beam radiation plus ADT. There are other ways too. Curative means you won't have to deal with a relapse in your lifetime. There is a lot of knowledge experience on this board to help.

Tall_Allen profile image
Tall_Allen

It is curable, as long as you have no scans showing cancer has metastasized. It may be curable if the only metastases are in the pelvic lymph nodes.

In the POP-RT trial, 95% of men with your risk characteristics were cured (no evidence of disease):

prostatecancer.news/2021/08...

It is possible to also get cured using a kind of radiation called SBRT along with ADT, Erleada and Zytiga as in the AASUR trial:

prostatecancer.news/2021/06...

Insurance should be willing to agree to at least adding Zytiga.

rosatt1 profile image
rosatt1 in reply to Tall_Allen

Thanks I had WPRT with ADT.

timotur profile image
timotur

I started where you are three years ago, and had Brachytherapy/IMRT/ADT, and came out of it as about as close to a cure as possible (in bio). Suggest seeing a radiation oncologist and see what the options are.

tango65 profile image
tango65

There are new imaging techniques available which are far more sensitive than the classic bone scan and CT scan.

I would not have any therapy until having a PSMA PET/CT, particularly having a high risk cancer since the Gleason score is 9. This study may indicate if there are distant metastases or if the cancer is confined to the pelvis.

If there are distant metastases the cancer is incurable and local treatment may be up for discussion depending on the number of metastases.

If the cancer is localized in the pelvis it may show if the pelvic lymph nodes are involved or not and it will be useful to guide the therapy and the treatment may be curative.

The PSMA PET/CT has changed the treatment plan in around 30 to 40% of the patient who had the PSMA test before primary therapy.

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

ehoneycutt29 profile image
ehoneycutt29

My situation was very similar to yours. I opted to do radiation. And, then 4 years later ended up having the prostate removed. Due to the prior radiation this caused all kinds of problems. If I could go and do things differently, I would have had my prostate removed immediately and then do radiation. So I say get it out and get it out asap.Thanks

Eddie

tad4 profile image
tad4

I was in similar position to you, having a Gleason scale of 4+5 (9) with no mets identified with the PSMA-PET-CT scan. Due to a heart problem I could not have Brachytherapy for 6mths. I was given 3mthly implants of ADT (Zolodex) then had HDR Brachytherapy followed by 23 sessions of EBRT. Currently, since end of treatment, my PSA is .008. Another PSA due in August + a bone scan and, hopefully, I'm still good. I recommend you try the course I took and I wish you all the best.

Tony666 profile image
Tony666

It is confusing as there are so many options. I suggest doing your own research, get lots of advice, get a second or third opinion from different docs, but in the end make sure you choose the treatment you are most comfortable with.

I was in a similar situation as yours. Of 12 cores, 3 had Gleason 9 but just a small bit (20%) and no evidence of spread. With Gleason 9 i wanted something systemic in case some cancer cells had escaped even though there was no evidence. But I was also wary of getting lots of radiation, due to long term toxicity. In the end, with lots of consultation, I chose a trial (NIH for me, but UCSD also has a similar trial) of 6 months intensive adt (adt+enzelutimide+abiraterone) to get rid of any escaped cancer cells followed by prostatectomy to get rid of the mother ship. Very happy w results so far. The biopsy of my removed prostate showed no cancer, meaning that the intensive adt had done its work. Still undetectable 2 years after surgery.

Until you meet with both of the oncologist and hear what they recommend there is no use second guessing what to do. The doctors will determine the best path for YOUR situation. Nobody in any support group can or should tell you what to do. Listen to the doctors, they know best by experience how to treat you. Being "healthy" with no other serious medical conditions is a big plus. Early stages of prostate cancer can be controlled better than others. 7 and below mainly. When you hit above 7 you need aggressive treatment and eventually that treatment will need to be changed as the cancer cells will adjust and progresses. But that can take several years. Nobody, not even a doctor, can predict exactly how you will respond to any treatment. Every man and every cancer are different in how they respond, but progression can be slowed. There is no way to predict what will work or what you should do. That is the job of the doctors and even they cannot make any promises. People on this forum can only share their own situation and what they did. They will all encourage and support you the whole scary journey though. It is always reassuring to know you are not alone. Good luck.

DMohr011 profile image
DMohr011

I was DX fall of 2020, Gleason 9/10 with a ductal cancer type. Last July my cancer spread to hip muscle and proton radiation treatment from Mayo started sooner than they had planned. I went from immobile in a wheelchair before RT to walking by the end of RT. Fast forward to today. I have been removed from all treatment and remain undetectable, and on a surveillance plan with scans and blood work every 3 months.

Throughout this journey I have been on Lupron, Zytiga and Keytruda.

I wish you the best and positive thoughts your way, and Welcome to the Forum!

Dave

Hailwood profile image
Hailwood

In my biopsy all of the prostate had cancer cells and I chose removal and during surgery it was confirmed that it had spread to a lymph node in the groin and a PSMA scan showed abdominal lymph mets...its been Erleada/Lupron for the past 2.5 years and all tests and scans show no progression. I opted for the surgery as opposed to radiation in that if RP was considered after radiation, its a bit of a mess to remove the prostate as there may be bladder and bowel connection, whereas in my case (and of course, I stress, in my case), the prostate came out, in the words of my surgeon, as smooth and easy as he had ever seen. Good luck on your journey but it appears that you may be the beneficiary of total remission in the future

anonymoose2 profile image
anonymoose2

Quote TA“It is curable, as long as you have no scans showing cancer has metastasized. It may be curable if the only metastases are in the pelvic lymph nodes”

I’m that person. G 8-8 PSA 33.4 RT contained to prostate. Did spread to lymph nodes. No bone or organ metastasis. 5 years Lupron 2 years Xtandi undetectable for 1 year. On drug vacation 3 months, still undetectable. I’m not ready to say cured for another 18 months. I’m watching my health very closely and eating a balanced diet with moderate exercise and low stress. Sleeping like a baby with 5mg of CBD THC 2 hours before bed. Right now very positive for the future. Again I must state I’m not cured “YET” but I’m positive I’m in remission at this point in my life.

in reply to anonymoose2

Hey Moose! I’ve been clear over six years . Keep rolling!

anonymoose2 profile image
anonymoose2 in reply to

That made my day! We all need encouragement! Thank you!

treedown profile image
treedown

Another cyclist? Curable will be an allusive creature for quite a while for any of us that fall into tha potential category. My disease was treated for curable intent and coming up to 3 years since dx. I avoid concentrating on the C word and never asked, but thats just me. My goal is to li e one dat at a time to the fullest and a old wondering what even tomorrow will bring in relation to my disease. Hope you find a good cadence for yours. Best of luck.

SteveTheJ profile image
SteveTheJ

Prostate cancer is fully curable if the cancer has not left the prostate. I was advised of two treatments: radiation (5/week for 9 weeks) or prostate removal. PM me if you want to hear my story of prostate removal.

Sanctus profile image
Sanctus in reply to SteveTheJ

Hello SteveTheJ:

I am all ears for your story. I trust it will be very interesting in deed.

Thanks very much for your response.

Sanctus

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

The definition of cured for me is.................. when my ex-wife left me................

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 07/14/2022 7:27 PM DST

cancerfox profile image
cancerfox

Seems like if you just do ADT to keep the cancer from spreading you may be doing it forever, which could be pretty miserable, not to mention the long term negative effects of ADT. Radiation or a prostatectomy probably are necessary for a chance for you to get off the ADT in the future. But you need to talk to your urologist, MO and RO to figure out your options. Good luck on your treatment!

Stanny1 profile image
Stanny1

Hi, Your diagnosis similar to mine when 67 now 74. My Oncologist has been terrific. Followed her advice all the way. Radiation treatment and now on Testosterone treatment. Libido has returned. Life is good. Listen to the expert's. It is a journey.

Teacherdude72 profile image
Teacherdude72

So much info to digest.I too was 67 at Gleason 9, several 4+5 cores. IMRT, HDR Brachy, Lupron 24 months. All good for 18 months then ADT again. Then psa rose. A year ago started Nubeqa. Psa dropped to less than 0.02 undetectable, same with T.

All good. Well zero energy but hit the gym 5 days week an 3 days areobics for an hour.

My RO says I will die with pca not of pca.

As to cure? Standard is no reoccurrence for 60 months. I went 40 years with no reoccurrence of Testicular Cancer the got Prostate Cancer.

We are all different in actions and reactions.

Live your life - it's the only one you have!

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