My husband has just been dx with high risk locally advanced prostate cancer. Please see the profile for lots more info..I put more info there than needed and don’t want to be too repetitive. In a nutshell we don’t yet really know what this dx really means..it seems from the NCCN site that is has metastasized. Is that correct?
And if its locally advanced what does local mean ?
Would be a PET Scan be advisable before any treatment?
What treatment approach is advisable from your experiences.
Your comments are very much appreciated and I’ll share them with my husband. My hope is that he makes use of this incredible support himself. In spirit, b
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RRgu
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Sorry to hear about your husband’s diagnosis. I’m glad you found this group right away. There’s lots of good advice and information here, along with the compassion of others in similar situations.
Local refers to cancer in the prostate or adjacent to it. Locally advanced prostate cancer is in organs next to the prostate. It’s different than metastatic prostate cancer that has spread to distant sites, such as bones.
I think the consensus among members, and in the literature is that it is difficult to remove all the cancer through surgery, and radiation is preferred. Other members will certainly chime in.
In the majority of cases any cancer not removed by radiation or surgery can be kept at bay for years, by cutting off testosterone that the cancer needs for growth.
Has he been diagnosed with cancer? What's his PSA and Gleason ? Your profile only references imaging without ref to the specifics of his disease. If in fact he has been diagnosed with Advanced Prostate cancer you will definently want to get an oncologist, possibly more than one depending on what treatment you decide on.
"Locally advanced" means the cancer the cancer has either penetrated into nearby organs like the bladder, the rectum, or the pelvic muscles, or there is cancer in the pelvic lymph nodes. Which is it? Both? If that were all there were, it may be curable with whole pelvic radiation and intensive hormone therapy.
He definitely needs more diagnosis. A spot on his spine (from a bone scan/CT?) that "could be arthritis" is not good enough. If it is, it would not be "locally advanced" anyway. (Let's ignore the kidney lesion for now, which probably has nothing to do with prostate cancer.) It is important to know that first. A PSMA PET scan may be able to tell you. If it is positive, some debulking radiation is still a good idea, but the focus shifts to systemic management of the cancer.
This is a great forum--don't know what I would have done without it!!Ask for an Axumin PET; it is FDA approved for recurrence, but our oncologist apparently coded or did something and got it approved last January when my husband was newly diagnosed--GL 9, PSA 10.43, 1/2 prostate malignancies and 1/2 clear, high risk, locally advanced...his was only in prostate but 3-4 pelvic lymph nodes were suspicious--they were treated as malignant for treatment.
Hubby went for whole pelvic Proton Therapy rather than regular radiation plus Space Oar to protect rectum--he did extremely well with treatments and no ill effects or side effects.
ALSO, ASAP make sure they put your husband on ADT injections (mine is on Eligard as Lupron has been harder to get apparently) --my understanding is it used to be all they did for cases like our husband's but it gives you time to make decisions on other treatment and get any more tests he might need.
You've found a good group here for knowledge and support. This site has become a safe haven for me to learn, discuss and work my way through the many issues associated with prostate cancer. HU can do the same for you. Initially you are likely to be scared and as you learn more, the fear will subside. This happened for me and that was about two years ago. The first thing I would suggest you do is figure out what your up against and that starts with PSA (bloods) and a biopsy (urologists) to determine the type of cancer and it's Gleason score. A renal scan showed I had bladder and kidney issues so the urologist ordered a PET scan to see where else the cancer might have reached. Luckily the scan only showed that cancer was also in my pelvis. So now I had a pretty good picture of what I was dealing with. So in sum, find out what your up against and that will reveal what your treatment options are. I recommend socialising those options here with the brain's trust to help with your understanding before you start. You've got this, chin up 👍 DD.
Thanks Doseydoe, you’re right, it’s bewildering and frightening to my husband and myself..but I feel like I can breathe deeper already from the compassionate, knowledgeable feedback and support from everyone that’s commented..thank you all and bless you all
PSMA PET/CT before anything else, except for 3-4 weeks of bicalutamide (Casodex) before the PET scan that may boost the PSMA expression, hence provide enhanced information.
Probably a Pylarify scan is in order. Newest and most accessible. What was his PSA?
The urologist is probably using the Roach formula for predicting lymph node involvement. Your PSA is not all that high but the Gleason 9 make the Roach formula put you at high risk. Just my guess. It has been a reliable indicator over the years though some say it is skews too high. So there is a possibility if this is a guesstimate that you don't have locally advanced and that he is just assuming that. Find out for sure.
I was a similar profile: Stage 3b, locally advanced to mesorectal lymph node and seminal vesicle, PSA 29. I chose HDR-Brachytherapy followed by IMRT external radiation and 18 months of ADT hormone therapy (see profile). Most importantly, get a PSMA scan before starting ADT to see if/where the cancer has spread to the bones or outside the pelvic region (which would indicate Stage 4). This will determine your treatment plan and whether it's considered curable. There's good treatment options available. Best to you.
Hi,I was diagnosed with very high risk locally advanced prostate cancer in early 2019. Each person’s diagnosis is unique and so is their prostate cancer.
Obviously there are significant similarities across groups of people hence being grouped into low, intermediate and high risk; local, locally advanced and advanced prostate cancer.
Gather as much information as you can absorb, digest it and repeat! Breathe, it’s not a death sentence. Depending on where you live there are options in respect of cancer treatment. I can’t tell you what is appropriate for you.
For me, I was past the point where surgery could be curative (my urologist was honest about that, though he did offer to perform the surgery). In Ireland, the best alternative available to me was external beam radiation plus 3 years of androgen deprivation therapy (ADT). I had 39 sessions of radiation including to the whole pelvic region i.e. including pelvic lymph nodes.
Next year I’ll complete the 3 years of ADT, since completing the radiation my PSA level has remained undetectable.
There are pros and cons to every option as each person will have differing priorities and that’s ok.
Learn as much as you’re comfortable with before deciding on treatment options, if you can, get a second opinion before you decide.
Come back here and ask as many questions as you need. I’ve found the people here incredibly supportive.
Sorry to read your husbands diagnosis I been on hormone therapy and zytiga since jan 21 reduced PSA from 25 to 6 within 2 months now for last 6 months remained at 0.01 hot flushes my main problem Hope treatment you decide on works it’s a shock and worry when first get diagnosis
Greetings, you've joined a great crew with tons of experience and wisdom to share. My experience is only 3 years in making, others 30! We've all traveled the path before you. For many the path is long (modern medicine has significantly evolved in the treatment of prostate cancer), for a few not so long - nobody knows why but we all choose to follow the long path.
I'll share a piece of wisdom I gave to a new member on another forum as she stated that it felt like her heart tore in half when they got the diagnosis. This wisdom is outside the medical speak as it's as important in my mind and many others to maintain a happy outlook on life.
"We all cry at first, then we join these support groups and learn how to fight and beat the odds. Then comes the appreciation of every single moment you have together, and the gratitude for so many of the little things that you took for granted. Eventually, it’s like a weight is lifted off your shoulders as there’s plenty of life left to truly live like you haven’t before" - The Wise man that temporarily possessed my mind - keep smiling my friends
There is some good advice here on this board. I’m new to this myself, but here is what I would suggest. You need to get a PSMA Pet CT scan, even if you have to travel. It specifically locks in on prostate cancer cells with the isotope that it uses, and will show you if and where prostate cancer cells are located anywhere in your body, including if the lesions that were identified and mentioned to you are prostate cancer lesions. It was approved by the FDA in Dec. 2020, and is slowly becoming more available because the isotope they use is not readily available. You can get it now at UCLA and UCSF medical centers. I would recommend consulting with a prostate oncologist, who doesn’t perform any specfic form of therapy for an objective assesment of situation. I would recomend conferring with Dr. Mark Scholz at Marina Del Ray (Los Angeles) CA, or someone in his firm, Prostate Cancer Specialists. They are on top of newest cutting edge therapies, tried and true therapies, and can help you determine which is you best path from you present condition.
As others have said: you cannot say whether or not it might be locally advanced or spread to lymph nodes or distant metastasis without determining this on scans. This is called staging. Otherwise it is guesswork and not acceptable. He needs to have care from a medical oncologist experienced in PC at this time. The typical scans for staging PC have been a bone scan plus a full body CAT scan. These have been largely replaced with the more sensitive and specific PSMA PET scans (such as Pylarify) that are specific for prostate cancer. He should have that before deciding on a treatment plan, though starting ADT would be fine. He needs to know if there is cancer outside of the prostate or not, and where it may be if so. Then he will be in a good position to select the optimal therapy.
You might think you're a dead man walking - a bit of panic at the outset - there's good news and bad news ....
In order to combat the bad news, you need some education about what you're facing while accessing competent medical professionals to guide you.
In addition, no two cancer cases are identical - although there may be some / several similarities.
Making predictions at this point in time (often MOST of the time) is a fools-game and accomplishes little to nothing.
Then there's the good news - advanced / aggressive does NOT mean a death sentence !
In 2016, I had a similar (actually worse) Dx - G9 and an elevated PSA in the 3 digits.
I was 'node' (lymph) positive, meaning it had escaped the 'capsule' and spread regionally.
The actual Dx at the time was T3b.
You will need an oncologist (you've graduated from a urologist), several scans to establish some baselines, complete bloodwork and a battle plan moving forward.
Surgery (radical P removal) is unlikely to fit the bill - because removing the prostate will NOT deal with the issue(s) 'properly'.
You need a systemic approach - which will likely involve radiation, some form(s) of ADT and perhaps some seeding - at least some 'combo' will be your best bet until something new and revolutionary comes along.
More good news - progress and research are advancing - there is reason to be optimistic for many / most of us 'patients'.
It's nearly 2022 - more than 5 years since my original Dx.
How am I today ?
PSA is now undetectable - after a recurrence about 18 months ago. I have responded well to my current form of ADT - there is evidence of a remission (scans show less 'cancerous' areas that continue to slowly 'shrink'). I am capable of physical activities and feel pretty good for a man of 70 yrs of age.
My doctors are elated at my current 'status' and it appears that I'll be around for several more years if the trend continues.
That makes me a survivor of advanced, aggressive PCa.
It's like getting a kick in the head by a horse. One day you're fine and the next day you're not, even though you feel good. We all have gone though this first step in the world of Pca. You have come to the right place for help, information and camaraderie. Take this new step one day at a time, remember they say Pca is a slow growing ca. You are a darling for taking up the challenge for the boss by being his caregiver and investigator. Of course he should also participate in his health and in his inquiries with his doctor. Mrs. RRgu us men do not like doctoring or anything that involves having to deal with health insurance and all of the other medical minutia needed to stay alive. Again, one day at a time.
Hi and welcome. Our diagnosis was similar to yours at PSA 14, Gleason 8/9. PSMA Pet Scan 2017. After Zoladex implant, 39 EBRT, increased exercise, no booze, clean organic diet with very little meat he is fitter than pre diagnosis. There are few guarantees with this chronic disease however he is 76 and fitter than many 60 year olds. Never give up, never give in. Relax and research. Facebook has a great resource group too.
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