Just checking in to make sure I don’t need to be doing anything else at this time?

[FormulaRob]

Hi all,

my father tested with 226PSA has received the results from his CT scan and Bone Scan. They were going to make us wait another 1.5 month before giving us these but after you all told me not to wait we ended up taking things into our own hands.

We were expecting some pretty bad results BUT turns out that they have ruled out bone spread , and organ spread. We had the doctor review them and said SUSPECTED prostate cancer, and the lymph nodes that sit just outside the prostate are a little swollen.. but ruled out any spread beyond that.

Biopsy November 3rd with follow up appointment Nov 23rd. We tried everything to push this up quicker but have failed at every attempt. Based off these results, the doctor is saying this biopsy wait time will not affect anything further since there is no spread. In fact even the swollen lymph nodes does not mean cancer has spread to them because it’s only the nodes closest to the prostate that are a little swollen and that is normal with prostate cancer that has not spread (doctor has said)

My questions are:

1. Should I be more at ease with these results and feel comfortable waiting for this biopsy now?

2. Any idea how he can have a PSA of 226 yet from what we see.. appears to be caught early. Almost worried posting this question as I have had great relief hearing the results compared to what I was expecting

3. Based off these results, does it seem like this is going to be not only treatable .. but actually curable ?

[WillowHawk]

Can't wait to hear what our men say. So nice to hear you calm today. All my best thoughts to the family. ❤️🌹

[FormulaRob in reply to WillowHawk]

Thanks Kate❤️, yes I am much calmer for the time being haha. Definitely experiencing a range of emotions but the fact that we’ve had some answers on his situation so far has helped.

[Tall_Allen]

The "swollen" lymph nodes together with the high PSA probably means there is cancer in those lymph nodes. But the good news is that it may still be curable with whole pelvic radiation and 2 years of ADT+abiraterone

He should get started immediately with 2 weeks of Casodex followed by a Lupron injection.

Contact: Andrew Loblaw, MD, FRCPC 416-480-4806 [e-mail]

[FormulaRob in reply to Tall_Allen]

Thanks TA ! I’m putting an email together now for your contact. Not so sure how likely it is that someone will jump on to help as every doctor is backlogged badly but it’s worth a try Also within 2 months before any treatment would you say it’s unlikely to spread to his bone or spine if it’s only in his prostate and maybe his nearby lymph nodes at this time ? I know no answer truly means anything but just wondering the odds of this wait causing any more complications

[spw1 in reply to FormulaRob]

Hi Good news that no bone spread but given the high PSA I would think that TA's suggestion is good. My husband had SBRT to the prostate with Dr Loblaw's team. He is a great guy but at the time he gave the treatment, Andrew had not had the training for space oar and that meant that post radiation was a very difficult experience. Hopefully he has now got that training.

[FormulaRob in reply to Tall_Allen]

I have emailed Andrew Loblaw as well

Plain text

[Tall_Allen in reply to FormulaRob]

I know this is all new to you, but I have a lot of experience in getting replies from doctors and can give you some clues for getting replies.

1. Keep it short. Doctors usually have a full patient load and may give an unsolicited email about 2 minutes.

2. Give results of tests - attach doctor's reports if you have them

3. Tell the doctor what you want him to do.

My rewrite:

Father is 65 in Toronto

PSA=226 ng/ml

Bone scan/CT (report attached): enlarged pelvic lymph nodes (cN1, M0)

Can't get biopsy until Nov 3, appt Nov 23

You were recommended. Can you see him sooner? Do you recommend he start Casodex and Lupron now? Can he get a PSMA PET scan?

[spw1 in reply to Tall_Allen]

Our experience of Dr Loblaw was that he did email back if we needed to contact him and his team was v good at answering questions if we needed to telephone them. The only thing for us was that when radiation proctitis set in, after the treatment of 5 days was done, it was the middle of the night and nobody would prescribe pain medication to help with the agony. I would give people the prescription to use if needed before they went home.

[FormulaRob in reply to Tall_Allen]

appreciate you going above and beyond in terms of helping Allen. I thought I made it simple the way I wrote it but I can see why what I wrote isn’t exactly as good as I thought. Your help means a lot, I have resent the email with the attachments and your summary . Maybe the timing of our appointments is fine but this is still worth a try. Princess Margaret got In touch with, doctor read his results form there and said they look good .. he said biopsy wait time at that hospital is 6 weeks so we’re better off just sticking with our current scheduled dates

[Nusch in reply to Tall_Allen]

Can Abiraterone be replaced by Daralutamide?

[Tall_Allen in reply to Nusch]

Abiraterone has proof (STAMPEDE) backing it up, so insurance will usually cover it. But if your insurance will approve darolutamide in this circumstance (N1 M0), I'm pretty sure it would work as well.

[Nusch in reply to Tall_Allen]

Many thanks TA. Yes, insurance will cover it and I expect less side effects. And yes, I‘m N1M0.

[westjl2]

I know how scary a wait can be but in this case you have certainly gotten good news so far. My advise is don't get ahead of yourselves with thinking of a cure before you know what you are dealing with. But men in his condition will have a great chance of beating this back for a long time, understanding that every man is different.

I would tell your father that there are great success stories of men living with pretty serious PC who are enjoying life to the fullest. I am one of them.

In my case I had a biopsy first which is more typical. The results were horrible with Gleason scores of 8 & 9 in all 12 samples! So by the time I got my CT and bone scan results I pretty well knew it had metastasized. It was in the bone and all through my lymph nodes as well as the seminal vesicles. I was 58 and my world came crashing down. But that was May of 2016 and I am still going strong! I have been on Lupron since then. Took 6 rounds of Docetaxel and went on Zytiga 3 years ago. My PSA is just started to rise again but no signs of Lymph involvment now and the bone mets have been stable for the past 5 years. Not a cure but a whole lot better than what the stats indicated ...a 28% chance of living 5 years.

All the best!

Jim

[FormulaRob in reply to westjl2]

Hi Jim thanks for reaching out with some perspective. I absolutely love to hear how well you’re doing great 5 years after that initial diagnosis. I can’t fully imagine what you or my father or anyone else actually feels at the time of hearing all of that.. in a wreck but my emotions and thoughts are obviously different from the actual person going through it.

The reason I’m like this is because my father doesn’t really do anything to improve any situation. He just listens to the doctor and then says okay and that’s it until the next appointment. Basically makes me feel like it’s my responsibility to make sure he’s explored all options.. I don’t want to have any regrets in the future plus I just feel like I owe my parents everything.. so whatever I can do to help.

Your post is inspiring and gives me a lot of hope and a lot to be positive about so I really appreciate brother and wish you the best ❤️

[westjl2 in reply to FormulaRob]

You are most welcome. The reality is that things can change so quickly. So while my story has been good I always stay on guard. And sure enough I have had to go through a bit of the initial diagnosis feeling all over again. My bone scan just revealed some progression in the bone Mets. So I had some radiation. My PSA has really started to jump. And I am getting numbness and weakness in my left arm. So it looks like another round of chemo is coming.

But I am still reasonably active and the pain can mostly be controlled with meds.

So stay positive but know that MPC is like a caged tiger…eventually it is going to get out again. Hopefully I can get him put back in his cage for another 2 or 3 years!

cheers,

Jim

[SeosamhM]

Doctors are no different than us if they have no data from actual testing/imaging. The data that you do have is a VERY high PSA. Give me science, doctor, and not your hunch!

Is this an Oncologist or Urologist leading your father's care? This is oncology territory.

Keep on advocating for your dad, FR!

[FormulaRob in reply to SeosamhM]

I’m completely in agreement , I am actually unsure of what this specialist is. I thought it was a urologist and still may be right. But he got the testing done at the hospital in which this doctor is literally working out of. I’ll check the paperwork when I get home to see if it tells me if this is a urologist or oncologist.

Totally exhausted but thank you for the motivation, I am not giving up on anything. Worst case we stick to the original appointments but if there’s a slight chance of any improvement then it’s worth the time and effort

[dadzone43]

These results ARE great. Since you realistically cannot change the biopsy, maybe put all that loving energy elsewhere??? PSA is a number, nothing more. There have been men on this forum with widespread disease and piddling PSAs. It is a number while the letters stanc for Permanent State of Anxiety.

[FormulaRob in reply to dadzone43]

appreciate this.. that makes me feel a lot better to hear. It just sort of scares me as to how or why it could be so high yet look like it’s caught somewhat earlier .. or at least early to the point maybe it’s not stage 4. Damn this is all terrifying but thank you I am doing everything to not jump to any conclusions or panic which would only prevent me from helping. Thanks dadzone

[dadzone43 in reply to FormulaRob]

Terrifying is exactly what it is. That was why four years ago when I was diagnosed I floundered around to find a group. There were none in my entire state. The only alternative was to start a support group; so I did. Still going strong wirh 53 signed on but with 12-15 actually participating . One of the early members introduced me to this forum.

[cancerfox]

I don't understand the delays.....must be a Canadian thing. When my PSA went above 5.0 I had a biopsy a few days later, a consultation about the biopsy results 4 or 5 days after that, and scans and start of treatment immediately thereafter. It sounds like it has been caught early before spreading, but why give it additional time to possibly metastasize? This isn't like dealing with high cholesterol. Plus there's the anxiety of not knowing exactly what you are dealing with. Good luck to you in getting proper care!

[FormulaRob in reply to cancerfox]

I’m honestly not sure if it’s always been like this or if that whole covid panedemic has left the system completely backlogged ? This experience has made me realize I was to support/vote for anyone that helps our medical system ..

But yeah that is my fear that this could spread by the time that they actually get started with treatment. We’re all just a number unless you’re rich that’s just the way it is over here

[westjl2 in reply to FormulaRob]

I live in Calgary and have nothing but good to say about our health care here. Yes I had to wait a bit for my final diagnosis but since then it has been top notch.

When I tell our American cousins how much I have had to pay for my treatments here in Alberta, they cannot believe it. $0. I figure that if I lived in the US and did not have insurance my total bill so far would be over $750K. Even with insurance their premiums, deductibles and co-pays would be very costly.

[westjl2 in reply to westjl2]

I just had an MRI and waited about a week. This is very typical here which is definitely no worse than the US system and it is at no cost. Yes our taxes are higher but no where near enough to cover the true costs of my treatments!

[FormulaRob in reply to westjl2]

this is true, having everything covered is such a big thing. I think I’m the United States you can pay for your own coverage as in health insurance.

This may be an aggressive cancer that my father has and the biopsy results come back on Nov 23rd. His bone scan and cat scan were pretty clear 1st week of September but by now if he has aggressive cancer then I’m really worried it has spread.. I feel like throwing up every day thinking about a possible spread now.

[MateoBeach]

I think you are being fed some bull**** to make excuses for their delay. Of course it matters. They already acknowledge he has prostate cancer with virtual certainty and at least, spread to pelvic lymph nodes. He must have a biopsy as soon as possible as you can not move forward to me that steps for possibility of curative or other treatment until then.

Then he needs to have a PSMA PET scan (Pylarify) to further rule out distant metastasis beyond the pelvis. The CT and bone scans are fine but but no longer the best standard to plan best treatment.

If Pylarify confirms there is no sign of cancer beyond the pelvis, then the best treatment will include radiation treatment of the entire pelvis along with treatment of the prostate itself, either the external radiation (VMAT or IMRT) or brachytherapy or possibly surgery (radical prostatectomy).

However, if the PSMA PET scan identifies metastatic sites beyond the Pelvic lymph nodes, then Triplet therapy treatment is best at this time and should be started fairly promptly.

I would find another top notch cancer institute and get biopsy scheduled with a urologist there. Your current one appears unacceptable. It takes less than an hour to do a routine trans rectal biopsy as an outpatient.

[FormulaRob in reply to MateoBeach]

oh shoots I’m thankful for this information but I have to admit this has taken away some of my current optimism. Them telling us it hasn’t spread and the lymph nodes just outside the prostate are the only questionable ones as they are just slightly swollen made me feel better.

The worst part about hearing this I’m feeling helpless .. we’ve contacted so many places with no success. Humber hospital is the current plan and is the long wait .. we then reached out to st.mikes and have been told by a doctor over there that when his own mother had breast cancer she TOO had to wait the standard time .. and now we got a hold of one of the specialists at princess Margaret and have told us he is willing to jump on and help us right away but he needs us to get the biopsy done and the wait time where he is would be 6 weeks .. because my fathers results were somewhat positive ? They said that there are people more of a priority in front of him. We really don’t think we have any more options other than to wait as my father refuses to go to the states.. feeling helpless at this time as I feel like I’ve exhausted all possible options

I sent a few emails to sunnybrook now to a guy that tall_allen has recommended on this forum but not reply yet. I’m praying it has not gone to his lymph nodes and sure as hell hope that it would be the worst case if it did.. because anything like bone or spine would destroy his spirits

[Lifer69]

a PSA of 226 is pretty high and may indicate an advanced tumor which can be surgically removed before it migrates. It should be less than one. The biopsies cause migration of cancer to other parts of the body.

In my experience I took the prednisone, zytiga and firmigon for two years but I found it impossible to sleep or eat. I remembered my college days and how cannabis made me sleep so well and have an appetite I applied for a medical cannabis card and started using RSO. Just a line from the syringe on a cracker and eat it. It seems to dissolve cancer cells and the body hauls the broken components away.

This could be why it was made a schedule one drug for 90 years!

No one here can give medical advice but I can tell you about my experience. I’m still cancer free but I still takes the meds (much less) and the RSO.

I pray for everyone here to come to the knowledge of inherent insight. I don’t know why I was brought back from a certain cancer death but I aim to find out. LOVE on you all! No matter how sick we are, find something to make you laugh and touch God again.

When we die, God whispers in our ear a very funny joke and we wake up in heaven, laughing!