Hello, my father was just diagnosed with advanced aggressive prostate cancer Gleason 9-10 (TBC). Bone scan and CT scan are next to check for spread (please God it hasn’t), but the scans are not for another 2.5 weeks! Then follow-up to discuss results a full week after that. Which seems insane that we have to wait this long in between initial diagnosis and further testing before we can even talk options for treatment. I’m fearful that delaying treatment any longer will only make things progress as we sit here waiting not being able to do anything. We asked to go on cancellation list or try somewhere else for scans, and they said they’re very backlogged. Is it normal to wait this long or should we be pushing for sooner tests elsewhere??
My Dad still looks good and feels okay…main symptom is more frequent urination, PSA 19.
We’re in Toronto, Canada.
Really appreciate any insight.
- Scared and heartbroken daughter
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LDC2024
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I hear you that you are worried and anxious. Take a deep breath. Or two. A few weeks, while it may seem forever, is not uncommon or something to worry about. Prostate cancer is notorious for being slow growing. I have seen studies that indicate a delay of a few months between diagnosis and treatment doesn’t have any impact on outcomes.
Still, you can use the time from now till the scans to do research and you might want to make appointments with potential docs (which may also have a wait time). One of the strange thing about prostate cancer is that in most cases there are several options all sanctioned by the medical community, and it is the patient (and family) that must make the decision. Wishing you good luck.
Thank you so much for your calm reassurance - it really means a lot and I truly appreciate you taking the time to respond and pass along some positive energy.
You're not going to get any faster engagement for diagnosis and treatment then what you've shared. I'm also in Ontario. The previous reply indicates that prostate cancer is slow growing so that you shouldn't worry. However this only applies to prostate cancer that has not metastasized outside of the prostate. It might still be slow growing but time is still of the essence.
In my case it was an emergency because of masses pressing into my epidural space and threatening my spinal cord. Two years later though, except for fatigue, I'm doing really well, and have no other symptoms. (I'm on heavy duty meds for as long as they keep working.) I have significant metastases to bones. But so far I've been very fortunate no metastases to any organs.
My point is you have outstanding care in Ontario; and yes this system is overloaded; and your current schedule of diagnosis and planning for treatment is not too bad. And without knowing anything else you're looking at good treatment.
P. S. - On diagnosis my PSA was over 1700 with a Gleason 9.
Hi John, In my case they could not treat me fast enough. Initial test PSA 860 ALP 535. Seventeen days later PSA 961 ALP 960. As you can see dramatic rise in short period of time. The next day started on Casodex, week later first Lupron Shot. I'm into my 3rd year. Glad to see you are doing so well John.
So happy to hear you’re doing well - it is reassuring to hear these stories that offer a glimmer of hope during an otherwise very stressful and heartbreaking time.
You’re in ON… we’re torn on where to start treatment. Currently tests are starting in Milton/Oakville, not sure where he will be referred to….I know Princess Margaret is top tier, however wait times are also consequently longer there. It’s so hard to know! Thanks for taking the time to share your positive story.
hi! We live in Germany. It took about 6 week from diagnosis to treatment in 2021, but the entire ordeal from first PSA test to treatment is almost 3 months(bloodwork, 3T MRI, bone scan, PET scan, pre-op appointment, and surgery).
The usually reaction of the patient is to get treated almost immediately to get rid of the problem. A Gleason 9/10 is an aggressive cancer which has already spread, whether you detect metastases with CT/bone scan or not. If they are not detected, they are too small to be detected. What you can do now is to spend time on selecting the treatment and try to avoid side effects if possible. The situation will not change in the coming months.
Thanks so much. Interesting you say this - I have spoken to a few people who have Gleason 9 and 10 that indicated no spread past the prostate. I guess we will wait and see and hope for the best and hope that a treatment option will be available. We know it’s not curable, but we’re hoping it can be treatable. Thanks for your insight.
These people probably had a CT/bone scan to detect metastases. If they would use the more sensitive PSMA PET/CT most probably small metastases would be detected.
If you want the prostate and the metastases radiated, Dr. Palma will do that. lhsc.on.ca/london-regional-... If your doctors just recommend ADT you could contact him.
I have a friend who was diagnosed the same time I was nearly 24 years ago. Gleason 10 with node involvement. He had a RP and Lupron for 2 years. That worked for a few years but Mets showed up on his spine which were radiated. I talked to him about his cancer about a year ago and he told me his Psa was undetectable and he had not had any treatment since the radiation to his spine. Unfortunately the radiation left him with 24/7 diarrhea. Prayers for you and your father because I know how hard this is on my wife and daughter. Honestly I was praying the Lord would take me home 2 years ago. Psa 5664 with cancer in lungs, nodes, spine, pelvis, and femurs with 2 compression fractures. Today I am doing everyday activities without pain and believe me the first thing I do every morning is praise my Lord and Savior Jesus Christ. Whatever you do, don’t get wrapped up in the statistics. Get wrapped up in prayer. God Bless.
Wow…that is an incredible story. I’m so sorry to hear you were in that much pain for a while but what a miracle indeed that you’re on the other side of it now and feeling okay. My Dad has a very strong faith and thanks God every day he’s on this side of the grass. Praying for many good years ahead.
Sorry, I just saw this post. Unfortunately he still suffers from constant diarrhea. He does pretty well but doesn’t go far from home. Considering his cancer was in his nodes at time of surgery and spread to bones and has had no treatment in 20 years I’d still call it a win. God bless.
I went through this with my husband. His PSA was 23 and we had to wait 6 weeks for the biopsy. So I got on line and requested an appointment at Cleveland Clinic. We got in in two weeks for the biopsies, had a video visit to discuss the findings, the following week had the PSMA PET and will be going to the Medical Oncologist and Radiation Oncologist on Monday. I know it seems like time stands still when we get this diagnosis. I encourage you to check out Cleveland Clinic I am so impressed.
Sadly, CancerWorld is often 'hurry up and wait' for various reasons. Our daughter was diagnosed with Stage IV cancer and treatment did not start until 4 weeks later. Talk about freaking out. 15 years later she is doing well.
I had a suspicious PSA test in late July (4.8). Retook late August (4.6). Didn’t get to see a urologist until early October. Couldn’t schedule pelvic MRI until early November (suspected cancer, at that point). Then had to wait 3 weeks for my biopsy (confirmed cancer). Then had to wait another 3 weeks before I could get a PSMA PET scan (cancer not widespread, just in prostate and lymph nodes). That was on December 14th.
It’s a long, drawn out path to diagnosis. This page is how I depicted it in my ongoing comic…
We are also in Ontario. My husband was diagnosed Aug 2021 Stage 4, Gleason 7 (4+3) with pelvic bone met. Then did genetic testing which showed BRCA2. He's currently in a clinical study conducted at Sunnybrook (Odette Cancer Center). This is an excellent, informative site.
How do you go about getting a second opinion? My Dad’s urologist at his biopsy results appt really insinuated that if scans show spread beyond the prostate, that he wouldn’t be a candidate for many options for treatment. He was doom and gloom, despite my Dad currently looking and feeling great (we are shocked at a cancer diagnosis and his main and only symptom is more frequent urination). Urologist suggested radiation is only an option if cancer is contained in the prostate, which after researching this in and out for a week now, I know not to be true. Mind you - this is a urologist, not oncologist, but I wanted to urge my Dad for a second opinion after scans are in to decide where he wants to proceed with treatment.
Do you just make a consult appt and bring your files and all scan results etc to another clinic? I know in the US, it’s much easier to get 2nd or 3rd opinions than it is here.
Awesome to hear! I’m saying radiation is a good option (in addition to other treatments as well) regardless of whether or not it spread beyond prostates/mets elsewhere. My Dad’s urologist said radiation “only if it is contained within prostate”….meaning he gave little hope if his scans end up showing spread/mets. I’m always clinging on to any hope I can. I’ve read of people having Gleason 9/10, mets to other organs and find a treatment that helps slow progression etc. I know it’s not curable at this stage, but I’m hoping it’s treatable.
Hi - one thing we learned early on was to get a copy of all scans done on CD, so you can bring it to other doctors for other consultations. Will save some panic and running around. Getting 2nd or even 3rd opinions is always a good idea. Strongly second recommendation to get PSMA scan, which is sensitive to showing metastases anywhere in body. Gleason 9/10 does indicate an aggressive cancer, but the fact that your dad is having no symptoms other than urinary is encouraging. And, this forum is the place to be - it's been a godsend for us. I read here every day and save many discussion threads and links in a special file. Best of luck to you - keep us posted!
I agree with what everyone's been saying. We were really nervous waiting for the results, but the first urologist didn't seem too worried about rushing things. My PSA was 8.1 and GS 8. He mentioned how during Covid, they had to play catch-up with treatments. There was this guy with a way higher PSA and GS of 9 who did nothing for 18 months. When he finally got another MRI, the prostate cancer hadn't really gotten worse.
It's not always like that, but it does show how we tend to freak out when we first hear about having prostate cancer and want immediate action. The truth is, your dad might have had it for years without knowing. Plus, I've heard stories on this forum about guys with a GS 8 or more still living life to the fullest 15 +years post-treatment.
So, no need to stress too much, it just makes things harder for you.
met with the oncologist the week after I was first diagnosis started chemicals then for 2 weeks. Chemo (6 ) rounds then. My doctor and hospital was really fast with there diagnosis and starting treatment.
Regardless of the scan he will likely be receiving Lupron to stop the production of testosterone which fuels cancer growth. Why not go ahead and start that treatment while you wait on the scan. Beginning treatment should make little to no difference in the scan if it’s only a couple of weeks away. Here in the states I was dx, scanned and treated within a week, I knew what the treatment was going to be, (Lupron is standard of care) so as soon as we met with the doctor and went over scans I received my first Lupron shot. I also have G9 cancer and took a very aggressive approach to my treatment, you can read my profile. I’m coming up on 10 years since dx next month thanks to good doctors, aggressive treatment and most importantly, Gods healing hands.
Skip the CT & bone scan. Go straight to PSMA Pet Scan. I had 4 digital exams! CT scan and bone scan, nothing. Did the PSMA Pet scan and found a very small spot on the spine. I agree that PC is a slow growing disease, but the earlier you can be properly diagnosed the more potent medicines you will receive. I was originally going to only get Lupron but upon the discovery of the spot on my spine I now recieve Erleada as well.
My MO says the new scanning technology and new medicines have substantially increased survival rates.
Bottom line, even if I had to wait another few weeks I would get the best scan I could get.
We are also in Ontario. It took 5 months from diagnosis for my husband to have surgery. (G9, with psa 28). For the vast majority of men, the wait doesn't make a difference. However, it's a different story for G9-10. We begged for neoadjuvant ADT (hormone therapy before primary treatment) to stop the growth while we waited and it was finally given. In retrospect, I really wish we had asked for a second PSA so that we could determine the doubling time. Gleason score is definitely a measure of how aggressive the cancer is but so is doubling time. I'm guessing that your local cancer centre is Credit Valley, but do your best to get into Sunnybrook or PMH.
Your dad sure is lucky to have you as his advocate!
While you are waiting and researching and learning, you may want to spend some time on the PCRI.org website. It is a non-profit organization run by a medical oncologist that has been treating prostate cancer for 30 years. You will find lots of good information there.
In my case a psa of 16 started my journey in March of 2022. Formal diagnosis of high risk (which means risk of recurrence) with 12 of 12 G8/G7 with biopsies and scans (bone, PSMA, MRI, CT) in July '22 when I chose to move my care to a cancer center of excellence. I started ADT (oral Orgovyx) in July '22 and Erleada in Sept '22 and had IMPT in Dec '22 and Jan '23. I'm still taking the ADT drugs.
As cancervictim above states you need to learn all you can and advocate for the best treatment. Select the best ADT you and your insurance can obtain and get that started ASAP. Choose the most experienced doctors. In my opinion a PSMA-PET scan should be mandatory to find all the visible cancer to target with radiation and/or drugs and then a plan to target micro-metastasis (those that cannot be yet seen on the PSMA scan). The latest PCRI video is very informative related to the current treatment of micro-metastasis.
9 months for me between diagnosis and treatment. G9 prostate cancer. As others have commented, there are published studies that indicate a wait of up to one year, even with high risk cancer, is not detrimental to the treatment outcome.
I had the same score as your dad and diagnosis. It was October of 2013. They did various test and treatments but didn't have the prosectomy until May of 2014. They then proceeded to give me radiation after that. Chemo also. To make a long story short I've been Stage 4 for over 10 years with all of the latest treatments. Everyone is different but what you have said about him, I think he will be fine. I'm 62 and still going strong. Good luck to him.
This was my experience. Cancer diagnosis mid-Feb, scans early March (probably about 2 weeks), then first appointment at MD Anderson late April. No anxiety because I knew I'd be in good hands. Information defeats fear. Don't live in fear.
I agree with the other contributors re the waiting time as mostly the spread if any is very slow and treatment needs to be based on accurate diagnosis, in my case once the PSMA/PET scan confirmed distant mets, the Erleada/Lupron started immediately, and the idea for radiotherapy was scrapped based upon the spread. The other option for quicker treatment is to become a member of the Royal Family in the UK, where treatment starts the next day!
Took at least a month for my dad to start his treatment from his first visit with an oncologist. 2 months of you include when he initially went to the hospital and they diagnosed the cancer. We too are in Toronto
Idk if that made a difference but his prognosis is very poor. His cancer is seemingly aggressive.
Sorry to hear that I hope treatment options are available to him and he has more years to come. My Dad’s scans aren’t until next week, then appt week after that to discuss results - he hasn’t even been set up with an oncologist yet. I called Princess Margaret to get an approx. sense of wait times and the person I spoke with said they are insane right now .and they’re booking into May. So we will probably advocate to go somewhere more local - perhaps Juravinski.
Unfortunately there are no more options for him, we have moved on to “best supportive care” and will try to give him as much joy for as long as his body will allow.
Rest assured, my dad’s cancer was already very advanced when we started and that doesn’t look to be the case for your dad (pending the next set of scans of course). I would agree, Princess Margaret is extremely busy, so if you can try and get in there still do that. But in the mean time, get into Juravinski sure. No matter what just make sure to continue doing what you’re doing, be your dads advocate, push for better care always.
Wow! Looks like it was a good choice for you then - glad to hear you were doing well for many years in between diagnosis and treatment and wishing you the best going forward.
Get ready to change your UserID to LDC20?? cause he'll be around for a very long time....We all know the fear and apprehension fighting the bastards..... Take plenty of deep breaths and tell your dear Dad not to give up his business. Waiting is half the fun...........the other shitty half is getting test results.....
I was diagnosed in mid July and got my first shot of Lupron mid Oct. Zytiga followed shortly after and radiation started in January. From blood test PSA 156 to diagnosis was about 6 weeks that included biopsy and scans. After diagnosis there was a 2nd opinion. It all takes time but gave me time to read Dr Walshes book and learn as much as I could. I spent hours on the internet looking for a loop hole I never found. I found this forum sometime during radiation and wished I had found it earlier.
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