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newly diagnosed.FRUSTRATED!!!!!!
buddy1
22 Posts
Hello: As a fit 60 yr old, i was under the care of a urologist for a elevated PSA for the past 24 mths and in October 2019 he detected a nodule during a DRE and ordered a Biopsy which took place at CancerCare manitoba Nov23/19 upon leaving i was booked for a follow up for Jan.20th 2020, when i got home i realized this was 2 d*** MONTHS away,the thought of going through the holidays stressing was killing me so i got in touch with my family Physician 10 days later around Dec.3rd on my [  60th birthday gift] ,he furnished me with the report which showed 8 of the 12 cores scored a 3+4=7  and the remaining 3 scored 3+3, I waited until after the holidays to break the news to my Adult children and am still so PISSED about no call from my Urologist and am going to give him an earful tomorrow at my follow up. knowing my pathology report has given me time to educate myself and have purchased and read  Dr. Walsh's book "surviving prostate Cancer" and have followed many forums, i am very strongly leaning towards Surgery and have a list of questions to ask. was just wondering if any other fellas here got second opinions ?? we are in a different situation than our brothers in the USA  as it would take months and months here to even get a foot in the door with another Urologist. And to try and get a surgeons track record for  successful surgeries is a challenge 
63 Replies
Wendy Tea
1637 Posts
buddy1‍  Thank you for your post. I am sorry you find yourself in this wonderful site filled with friends.

I am going to tag WesT‍ to help you in your journey.

Best wishes 
Wendy Tea 
WesT
892 Posts
buddy1‍ welcome and sorry to hear of your situation.

I was in a similar situation 2 years ago and had a biopsy on January 10th 2018.  As part of the registration process (at Princess Margret) I was asked if I would like to receive the results when they were complete.  I said sure.  My follow up appointment  with my urologist was 2 WEEKS after the biopsy.  When I received the result online I had cores assigned a Gleason score and said to myself, what the h*** is a Gleason score?  I searched online and found a number of sites that stated if you have been diagnosed with prostate cancer the biopsy will indicate a Gleason score.  I called my urologist office the next day and asked to move up my appointment to the earliest opening at which it was confirmed.

A follow up of two months is definitely an issue in my opinion (I am not a doctor or medical specialist), especially when you ended up hearing from your family doctor that you indeed have prostate cancer.  I think I would have a few words for the urologist myself.

I also purchased Dr. Walsh's book and it was a great resource for me.  When I went back to do the follow up before my surgery I knew all the answers I needed but also knew exactly what questions to ask to make sure I was making the right treatment choices.  My urologist was a little taken back when I asked him how many surgeries the hospital does a year and how many in total he had performed.  Also I asked on his follow up with his patients.....  When he realized where I was going with my questions he opened up and gave me all the facts I need to make an informed choice.

Given that all the cores were positive in your case I would hope that they move quickly after you appointment tomorrow.  As calmly as you can ask the questions you have to ensure you do make the right choice for YOUR needs and not your doctors....

Let us know how your appointment goes tomorrow and good luck!
buddy1
22 Posts
Wes: Thank you, i am sure he will be taken aback when i show up with the pathology report in hand. After reading the "in 60" flow chart from CancerCare Manitoba  the next step will be a Pet scan and a bone scan to determine if it contained in the casule and he had better not push me for a decision on the procedure that i am wanting. i am still so full of anger/rage it might no go well, i am appalled at the state of our health care system here in my city
WesT
892 Posts
buddy1‍ I understand your feelings in this for sure.  My advice would be to remain as calm as possible and let him lead the appointment giving you his opinion and recommandations and when he (assume he does) ask if you have any questions, ask the specific questions you have and then let him know how you feel.  Insults and or threats will not help your or his case and will likely put him on the defensive and if you go in with guns a blazing he may refuse to treat you and then you will have to wait longer to get a new urologist and start everything again.

He may have just had personal commitments that lead to the long lead time to the follow up.....

You need to focus on getting your treatment as soon as possible with all cores positive.  The CT and bone scans will help focus in on the type of treatment that is best for your situation.  I personally had a CT scan recommended and set up by my family doctor because I had a (suspected and later confirmed) kidney stone that I went in to see her about initially.  The stone and my PSA numbers lead her to set up my initial appointment with the urologist. The bone scan happened fairly quickly after meeting with the urologist after the biopsy and my surgery took place two months following the biopsy.

Calm and focused is the state of mind you need to be in tomorrow!  Good luck and I hope you move forward quickly.
edap
16 Posts
buddy1‍ Seems to me that the uro feels your cancer is slow-moving and not very aggressive. What is your psa history? Any urinary issues? If you are asymptomatic, then he probably feels that time is on your side. Wouldn't rush to judgment and ask for a second opinion, yet.
As WesT‍ suggests, listen first to his plan/options, then ask your questions and don't hesitate to query him on his past record of prostate surgeries. 
buddy1
22 Posts
Guys:  Thank you for lending an ear tomy frustration, i will try and stay calm tomorrow and here what he has to say and at the very least i should get some time lines for future scans,The thing that i still can't figure out i my follow up appointment was made before the Biopsy procedure was completed! my wife was given the follow up app.letter as soon as i was brought in to the room. I will let you guy know the outcome tomorrow. 
buddy1
22 Posts
Guys: I had my follow up appointment a couple days ago and my wife insisted on coming as i think she knew i was going to blow my top, when the Urologist came into the room the first word out of him was to apologize for the 2 month wait,apparently he doesn't set his appointments,i did tell him i tried moving up the appointment but his receptionist  had no cancellations. moving on with the meeting,he is putting a rush on the CT and Bone can and when i asked about a PET Scan he said it wasn't a very accurate test for the prostate, i also told him Dr.Walsh  calls the CT a DUD for prostate,he was surprised as hell that i has a copy of the pathology report and had questions written down for him to answer. i just got back from the lab as he wanted blood work done for my kidney function before the CT.He strongly advised going the surgical route and that is what i was leaning towards anyway,he only performs the open surgery and has done hundreds of them. the current wait time in Winnipeg for the surgery is 3-5 months after we get the 2 scans done!! this waiting game is more stressful than the Diagnosis. I did question him on how a "Nodule" can appear within 3 months of my last DRE and my PSA only went from 3.25  to 3.91? he was a bit concerned and mentioned he may have missed it in the first DRE. So i am waiting on the 2 scans which he said come come as fast as a couple weeks with the rush placed on them. Just for the hell of it i checked the Mayo Clinic and i can get the procedure done next week with semi-robotic Da Vinci procedure BUT @ $67,000.00 USD so we WAIT. he did say i can expect to be off work for 6-8 weeks as working as a Aircraft mechanic and working in all different cond. and positions and lifting,so i could be off for the summer which i guess isn't that bad and it will give me time to ponder my retirement plans 
WesT
892 Posts
buddy1‍ Good to hear your wife went with you.  She will be part of your recovery and have to deal with you now and after so her being involved is good!

My urologist only does the radical procedure as well so he strongly recommended that path for me, have done over a 1000 over the last few years.

Wow, 3-5 months wait!  My date was set up two months after my biopsy and follow up appointment.  During those two months I had the bone scan and a few other tests done.

I was off for 6 weeks before doing a return to work routine where I slowly increased my working hours.  I was back to full schedule after three months but still refrained from any heavy lifting beyond that just to make sure everything was healed.  My workplace was accommodating in that regard and extended timelines beyond what my urologist requested.

Keep us up to date on your progress!

Being off made me realize that retirement was not that far off and potentially very desirable.
buddy1
22 Posts
WesT: The wait here in Manitoba for surgery has been long in every hospital, the part I found amusing is my Urologist is putting a rush on the 2 scans but mentioned the current wait for surgery is 3-5 months. I thought to myself why not get the scans done closer to the surgery date so as to have the most recent images. As I sit here at work I am practicing my Kegel exercises as many of you as well as Dr. Walsh strongly urge one to do these. 
WesT
892 Posts
buddy1‍ I don't do mine very often.  Every time I visit the urologist he tells me I need to do them! (with an explanation mark....)  I also read somewhere you can overdue it which may cause the sphincter to relax too much.  Most people piping in with comments will tell you to do them, but they don't do them enough either.

Would an out of province procedure be covered?  Could you go to Ontario or Alberta to have it done and still be covered by Manitoba's health care?  You may need to stay until after your catheter and staples are removed (10-14 days) but that may be an option to speed things up if it is....
Laika57
730 Posts
A friend had back surgery done in the states and got reimbursed by OHIP.
Not sure if that's an option for you. 67grand is a lot of dough to wait to be reimbursed for in any case.

The diagnosis before xmas I can relate to. Hubby was diagnosed mid December. They scheduled a CT which would have been a week after the follow up, but I managed to move it up to the day before - not through the doctors office, they were closed for the holidays, but calling radiology directly.

Also agree to take your wife along to appointments. Always better to have two people listening to what the doctors are saying (and not saying).
I set up a shared calendar for appointments, and made a list of prescriptions. it helps me keep track of when he has to be where and what meds he has to take when. I did this because I felt he wasn't telling me everything (dumba$$ is trying to protect me from reality even now), nor listening to the doctors on what meds to take when. In the end it helped after realizing he was having a bad reaction to pain meds - having appointments and meds all written down made it easier to deal with, logistically speaking at least. Still sorting out his banking and battling the hospital on being kept in the loop. POA and a list of passwords might have made things easier. Just something to consider before going in for surgery or starting new meds...

good luck. And I wish you patience.
WesT
892 Posts
Laika57‍ Dumba$$....man.... is there a difference....?🤔
Laika57
730 Posts

WesT:
Laika57‍ Dumba$$....man.... is there a difference....?🤔

We all have our moments. 🤷‍♀️
Cynthia Mac
3236 Posts
buddy1‍ I’m sorry you’re frustrated and hope some of the comments others have made have helped you understand some aspects of the process. Sometimes followup appointments are made before the tests happen - this happened with my Dad (lung cancer) twice during his diagnostic phase - he had his consult with the surgeon before either the PET scan or his needle biopsies had happened. I viewed it as one small efficiency in a time of great stress!

Dad is a prostate survivor, too (surgery in 2002). I don’t think he had a PET scan back then. Actually I’m not even sure they had PET scans back then.

I found the same thing as WesT‍ When it came to retirement. It’s working very well for me, too.

May I say that I think your wife is a wise woman, and would you please give her a hug from me! 😉

Laika57‍ Has offered some valuable suggestions, too. You’re apt to get asked about your medications often, so I created a note book for Dad and put that information, health care contact information, and section to list any questions we had and record any answers. It’s wonderful to have it all in one convenient spot! 

If you require any other observations, you’ve found where we are!
Essjay
1538 Posts
Hi buddy1‍ i too live in Manitoba and have found the waits frustrating. Manitoba ditched ‘insixty’ because they were so far off the targets...

Please be reassured that cancer grows slowly...

It sounds like your urologist is in your corner. My own experience of Cancercare Manitoba is that the treatment is awesome, and the system is pretty well integrated. The prostate suite on McDermot Ave is pretty smart from what I’ve heard.

Would it help to talk to someone who has been through the same diagnosis and treatment in the same province? The Canadian Cancer Society runs a peer match program which is awesome. For more details see https://match.cancer.ca

As for waiting, distraction is your best option...I renovated my kitchen while waiting for biopsy results!

 
WesT
892 Posts
buddy1‍ Yes indeed, like Essjay‍ said, distraction is the way to go.  Focus on a hobby, a vacation, work, whatever it is that keeps you focused on something else for the time being.  Time will pass much quicker and it should help ease you anxiety, concern and frustration.
buddy1
22 Posts
Guys: At least my scans are moving fast, i just got a letter in the mail from my Urologist setting up a follow up appointment for feb.7th, i thought that was odd as i haven't received dates for the scans, as i was reading the letter again to make sure it was indeed my info when the phone rang and it was a hospital in winnipeg letting me know of my CT scan for this Monday!! wow that was fast, now for the bone scan. The thing that puzzles me is my the rush for images when i have a 3-5 month wait for surgery, you would think getting scans closer to the surgery date would be the best accuracy/imagery. Oh well at least the ball is in motion.     
WesT
892 Posts
buddy1‍ if everything is ready and there is a cancellation they may bump you up.  One can hope.
buddy1
22 Posts
does anyone know if the radiologist performing the CT share what they see with you or is that forbidden, it would be nice to know when you are done what they have found,
WesT
892 Posts
I got a copy of mine about a week later on CD (I had to pay for the copy).  Since my family doctor had ordered it before I had seen a urologist, I got the copy to give to him.  Of course I kept a copy for myself not that I understood it.
Laika57
730 Posts
Our local hospital has a web portal where you can sign in and see your scans and the radiology report along with it. - you have to purchase each one, for about $5-15. So it can add up if you're at the hospital for any amount of time.
you can also get the CD, but you need special imaging software to see the images. I believe they usually include several of the most recent scans and the report in am odd format.

note, the radiology report only states facts. Size, type, location etc. No interpretation.

My husband bought the report from a brain CT he had done for bells palsy. He looked at it before talking to the neurologist. Not sure it did him good or bad to read things like "permanent infarction" and "white matter disease". He was very upset until the doctor could actually put those things into context for him. - Not much you can do, the stroke was years old and the white matter is "normal wear and tear" but can precede dementia.

Knowledge and interpretation of a given scenario are two different things.

If they do see [something] your doctor will have to tell you what it means in your specific case. 

Having said that, I'd probably get the scan results. Not knowing & imagining the worst would bother me more. I think.
edap
16 Posts
Try the Medical Records Dept at your hospital. They always get copies of the Diagnostic Radiologists' reports within a week. There may be a small printing charge. 
buddy1
22 Posts
well I had my CT Scan yesterday and on my way home another hospital called to inform me of a scheduled bone scan for this Friday!! Wow at least the scans happened fast and now at least I will know if it has spread or not, I have a follow up with my Urologist for next Friday. I suppose if it is contained to the prostate the wait will be tolerable.
WesT
892 Posts
buddy1‍ that is happening quick.  Who knows next Friday he may have a date for your procedure!
buddy1
22 Posts
Well i got the bone scan done this morning, and while i was on the sliding table they had finished the head to toe scan they flipped the machine to get images of the side of me i noticed a bright yellow spot on either my rib cage on on the lung and when it continued down to my pelvis area the area i believe was my prostate light up yellow with lesser yellow trailing around it, making me nervous now. i have my follow up nest friday with my Urologist to go over things,any thoughts would help ease my mind
Cynthia Mac
3236 Posts
buddy1‍ , maybe it will help to ask yourself what exactly you know about the yellow dots. You think they could be one thing, but are you 100% sure of that?   Is it possible that those flags could be a sign of osteoporosis, or an old injury? 

For some reason, our minds always seem to go to the “dark possibilities.” For now, try to distract yourself, or at least focus on things you absolutely know for sure.
WesT
892 Posts
buddy1‍ I think dark spots are more worrisome (but I am no‍t in the medical field or expert).  I wouldn't stress over something you thought you saw, it could be anything, good or bad, so wait it out and see what you urologist says next week.  Easier said than done my friend but distract yourself with something enjoyable and go with it for now.
 
buddy1
22 Posts
well after a much needed holiday in Costa Rica i arrived back in time to make my follow up Appointment with my Urologist to go over the results from my CT and Bone scan. NO issues detected!!! A relief of sorts.He did mention that he will be taking out the lymph nodes beside the Prostate and will try of course to spare the nerve bundles, will meet again in a few months as the current wait times put me at a July surgery. He did stress about the incontinence issue and erectile function as being major physiological  barriers to not discount. I am wondering how a patient can find out how many of these procedures a surgeon has performed  other than what they all say, would this be available.   
WesT
892 Posts
buddy1‍ Glad you enjoyed a holiday, distracts are good!  The bone scan results sound good as well.  Sometime not seeing or knowing anything until you get the word from the doctor is a good thing.  You thought you saw something and stressed about it for, in this specific case, no good reason....  Glad it is a good result though!

Yes indeed, incontinence and ED can take its toll emotionally and on a relationship if you are no prepared.  Even if you are prepared it can still have a massive emotional toll.  Start working on your Keagal exercises, if you haven't, and enjoy what you still have while you still have it.  Prepare for the worst outcome and hope for the best!

You can look for doctor's reviews online.  Take them with a grain of salt though.  There are always going to be overly negative and positive reviews by those that did not get what they expected or perhaps have personal ties to the doctor.  Best to ask the doctor himself on the number of procedures and the success rate (not to mention follow up statistics).  The hospital that you will be having the procedure done may be able to provide statistics about procedures as well.

Now the wait!  Time will pass quickly if you remain positive and try and stay distracted.
buddy1
22 Posts
Morning all: i have been away from this site for a while trying to distract myself from my diagnosis. i received my pre-op surgery pkg. in the mail  a few weeks ago need to get EKG and bloodwork done surgery date of June 23rd which is fine with me. Fast forward this past week i received a phone call from my Urologist telling me the surgery is postponed due to Covid 19!!  d*** i can't get a break, i asked why the cancellations when here in Manitoba we only have 8 people hospitalized and 3 in intensive care, surely the hospitals aren't overwhelmed with 8 cases requiring hospitalization, he really didn't have a good answer  for me. The Province must be withholding the truth on the true numbers of covid infections as they are building 3 additional temporary hospitals to handle the increase! WHAT INCREASE. going to call next week and find out if Brachetherapy can be done as a option to waiting for surgery or is this procedure on hold as well. Happy Easter everyone, my rant is over   
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