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newly diagnosed.FRUSTRATED!!!!!!

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by buddy1 on Jan 31, 2020 2:04 pm

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

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by Cynthia Mac on Jan 31, 2020 3:17 pm

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.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by WesT on Jan 31, 2020 3:51 pm

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.

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by buddy1 on Feb 8, 2020 9:38 am

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.   

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by WesT on Feb 8, 2020 9:53 am

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.

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by buddy1 on Apr 11, 2020 11:10 am

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   

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by WesT on Apr 11, 2020 1:02 pm

buddy1‍ That seems to be a common theme among cancer patients these days.  I had unfortunately read that prostate cancer is not on the top priority list for treatment during this "crisis".  Hopefully you will be rescheduled in short order and get everything taken care of.  On a positive note prostate cancer is usually slow moving so if it is still early enough it shouldn't be too much of an issue just yet.

I wish you and everyone else in a similar situation the best.

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by Cynthia Mac on Apr 12, 2020 7:32 am

buddy1‍ , good for you for asking a very logical and rational question with regard to your case. I believe that you have just sent them a message that you are not to be given the run around.

As I understand it, the concern isn’t about the impact of the actual increased number of cases, the concern is having enough medical staff to go around if THEY start getting sick. I have a relative who works in long term care for seniors, and she tells me our local hospital is “emptying out” its convalescent ward to various LTC facilities so they’ll have rooms and extra staff to handle any surge in covid cases. (We’re in ON, where cases ARE surging.) I saw her last night when she picked up some masks I made her, and even from 2 metres away, I could see the worry on her face.

I get that we’ve been self isolating since the middle of March, which is almost a month, and that has to be helping “flatten the curve.” BTW, I’d like to see the curve as it stands now... as I believe you would.

Given how your conversation went with your urologist, he may remember you and get you scheduled in as soon as he possibly can. Since you plan to speak with him again soon, you can at least request that.

I’m sorry (very sorry) that you have to go through this added frustration.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by SBH on May 9, 2020 12:38 pm

I just joined this group buddy1 and noticed that your Gleason score is 3+4.  That is also my score for 2 cores not the 8 which you have, so considerably less but otherwise I am a very healthy 76 years old.  This was just before Covid-19 so I was also told by my BC oncologist that I could not get the treatment I wanted until elective surgery was again possible.  FYI, after doing considerable research and speaking to members of support groups and several urologists and oncologists I am steering towards brachytherapy because of fewer side effects.   I was told however that I could start external beam radiation (up to 28 daily treatments during the weekdays) right away but brachytherapy would have to wait until elective surgery was again available.  In the meantime I am on active surveillance (PSA reading every 6 months).  In fact one top urologist in Vancouver recently suggested I continue to do that since most cancers are slow growing.  Maybe he figures at my age surgery or radiation would adversely affect my quality of life for the time I have left!  He might be right as ED, urinary and rectal issues are definitely ones to consider when looking at treatment options.  And I place surgery as the worst one for what it's worth.

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by Barney on May 10, 2020 9:18 am

Barney here. When I read about the numbers of patients who, like me, are getting frustrated about the difficulties of having medical and diagnostic services scheduled and completed,I can only say "join the club".. Clearly there is a problem and it must be a matter of shrinking supply and growing demand when it comes to these services. Covid 19 has surely been causing much of the problem. Doctors, nurses and medical technicians staff get sick too, so there are fewer of them available to look after the rest of us when so many are going to the ER and from there into hospital beds. However there seems to be cause for hope when one sees the numbers of newly infected people starting to level off.

I suppose that I must count myself fortunate that my prostate cancer can be treated, to some extent at least, by pills that I can take at home. The other medication that I need, Lupron, is given by injection that requires a visit to the urologist, but that is good for four months on a single shot.  So far so good, although some of my diagnostic procedures at a local hospital have been cancelled. I suppose that it is a matter of the medical staff setting priorities based on patient needs. Luckily, for me, it is possible to be philosophical about it, but I can empathize with others who find it all hard to bear. It takes some courage,.....If one can find it !

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by Elsie13 on May 10, 2020 10:45 pm

SBH‍ , I wonder when those elective surgeries will get going again.  Also, you might be near the top of the surgery list, who knows?  
I wanted to mention about tagging someone. To tag, you type the @ symbol and immediately start typing the name of the person.  Some blue boxes should appear, and you click on the one that applies.  
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by buddy1 on May 14, 2020 4:41 am

Some good news, I found out yesterday morning my previously scheduled surgery is back on!! went and took care of my EKG, Chest x-ray  and bloodwork, surgery is slated for June 23rd,now I am hopeful is doesn't get bumped, maybe start those Keigle  exercises [thanks Wes] to prepare. I have been so Cynical and miserable these past couple months my wife and Adult kids are fed up with my nastiness. What really pisses me off especially in my province [Mb.] they talk about Covid testing etc.. and we have the lowest testing in the Country but we shut down our hospitals to care for less than 10 hospitalizations and 3 of those in IC, now they are begging for people to come back to er's  [Crickets] so quiet they are re-deploying nurses and doctors and now trying to start up elective surgeries again.  

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by WesT on May 14, 2020 7:12 am

buddy1‍ great news!!!! 

I hear your frustration but be thankful we don't live in the US where 1.4 million nurses were laid off because the lucrative lift and tuck elective surgeries are postponed so to increase the "bottom line" they laid staff off.

Hang in there it is just a month and a bit away.  Hopefully the weather improves and you can enjoy your recovery time sitting in the sun (isolated of course).

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by Lacey_adminCCS on May 14, 2020 11:26 am


Thanks for the update. I'm so glad your surgery is back on. 

How are you keeping busy before surgery?

Glad you have connected with WesT‍ and all the other great folks here.


Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by Lianne_adminCCS on May 14, 2020 5:13 pm

Glad to hear you are back on track buddy1‍ .Close enough to not have to wait too long but far enough to prepare in any way you feel you need.

Keep us posted

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by buddy1 on Jun 21, 2020 9:38 am

well folks the surgery date is day after tomorrow, i have been in self isolation for the past 14 days out at the lake keeping busy doing jobs that needed to get done, it was a good distraction for sure, received my telephone call app. from the pre-admissions clinic spoke to the  anethistician  for quite a while as well as the surgical nurse. i found out a interesting tidbit during our conversation that the latest blood work reveals i have very poor kidney function and will have to discuss this Tue. with the surgeon, kind of caught me by surprise. I have to say now the Anxiety is kicking in  after such a long wait it is finally here, been doing a lot of Kiegel work and re-reading  Dr. Walsh's book. Ready as i will ever be, i want to thank everyone for their support and wisdom during my wait .


Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by WesT on Jun 21, 2020 9:42 am

buddy1‍ Don, I wish you the best with the surgery and recovery.  Hopefully the kidney thing isn't serious!

Distractions are good and I am glad you were able to do so.  Chill on the anxiety front.  You are prepared and things will hopefully go well for you.


Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by Arnie on Jun 22, 2020 5:46 am

Best of luck. My prostatectomy was cancelled too. Fortunately, my surgeon got me rescheduled for late March. I was lucky. The hospital OR’s were empty except for me and one other patient. I just had my first post surgery PSA test and it came back at zero. Very good news. My post surgery experience has been positive. The worst bit was the 2 weeks with a catheter. I’ve been out on the golf course since mid May. I have some stress leakage but it is manageable and getting better. My surgeon sent me too a physiotherapist prior to my surgery to show me how to perform the Kegals properly. Something to keep in mind after you recover.

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by WesT on Jun 22, 2020 10:55 am

Arnie‍   It is good to hear your recovery is going well!

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by Lianne_adminCCS on Jun 22, 2020 11:38 am

Wishing you well for your surgery,

Look forward to an update when you are up to it


Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by buddy1 on Jun 29, 2020 9:13 am

Hi Folks: Well i had the surgery Tuesday at 11:00 and was discharged this past Saturday. The surgery had a few issues along the way, i found out  i was a heavy bleed losing almost 3 units of blood and at one point my blood pressure crashed and was very low a few days later forcing me to wear the inflatable leg sleeves,the surgeon came by the day after surgery to give me a update thats when he told me about the heavy bleed.he had a difficult time with keeping blood out of the area and as such he could not or hose not to tell me if he managed to preserve the nerve bundles,this has me really bummed out right now,I also suffered one full night with the dreaded bladder spasms that was the most painful experience of my life,felt like someone was reaching inside of me and squishing my bladder to the point i almost passed out, i had 10 of these through the 2nd night,it flushes out the urine so  fast it even backed up into my drainage  tube/bottle,it wasn't until i told him about it next day did i get some meds that settled it down,they drained my drainage bottle 3 times that morning.Now at home waiting/recovering and counting down until the staples/catheter removal next Monday.Even after reading Dr.Walshes definitive book on Prostate surgery and numerous other sources i   really was surprised on how uncomfortable i was during my stay, the Morphine made me so nauseous i stopped using it even after they added gravol.Bowel movements are good and doing lots of walking albeit slowly.will check back after catheter removal 

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by WesT on Jun 29, 2020 9:33 am

buddy1‍ sorry to hear of your issues.  Hopefully the worst is now past,  I also had bladder spams a couple of times but not near what you are describing.  They did give me the anti-spasm drug right from the time I came out of surgery and sent me home with a prescription.  I used it a few times but not regularly.  The pain meds I didn't use after getting home except on two occasions.  I did take a lot of extra strength Tylenol though...

Good to hear your up and moving about.  You will be glad when the staples and catheter are removed and hopefully then your recovery goes well and is a speedy one.  Good luck