Urgent Advice Needed. Time Sensitive. - Advanced Prostate...

Advanced Prostate Cancer

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Urgent Advice Needed. Time Sensitive.

FormulaRob profile image
70 Replies

Hi all,

you were all so helpful on my first post so I need some serious advice here

We live in Toronto Canada.

Father diagnosed with 226PSA a few months ago. He has now done the bone scan and the CT scan.

His biopsy scheduled for November 3rd. With follow up appointment on November 23rd.

My father is unaware but my mother had called the doctor and asked why hasn’t he received a call back yet regarding the first 2 tests (bone scan + CT scan) .. it’s been a month since these tests were done

We had assumed we would receive a call quickly if anything very bad especially with the high 226PSA.. But here is the answer that the receptionist gave “his tests have not been reviewed yet and the doctor is now on vacation. His biopsy is not until November 3rd so without the biopsy it would not make a difference if we read or looked at the results of these first two tests at this time”

my question is because my mom and I don’t want to live with regret thinking we could have done something more .. do we just accept this ? Or could this wait be the difference between life and death. What can we really do to change anything now? Is this common practice ? November 3rd still over a month away but how much could we really speed up anything at this point.

We have not told my father yet as we don’t want to scare him as he’s thinking it must not be that bad if they haven’t called in a month. If we can’t change anything then we don’t want to bring his spirits down

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FormulaRob
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70 Replies
WillowHawk profile image
WillowHawk

Hello my friend, good for you to pop in and ask. I can imagine how frustrated you are. My first reaction is this doctor doesn't understand how scary life becomes on diagnosis. (Hard to say; maybe never time for a vacation because he's so awesome.) I'm sure you will get some smart replies very soon from your Very Special Think Tank! Meanwhile I'm giving you a big hug, and mom too. My sister in law is from Canada so we're practically related! Looking forward to more info below! xxoo Kate

FormulaRob profile image
FormulaRob in reply to WillowHawk

Thanks Kate for the reply. I’m completely livid right now. The doctor/specialist said they would call in 5 days from the time of test if anything urgent was seen… and now we find out from the receptionist that he hasn’t even read the results of either tests and it’s been a month. She made me promise not to say anything because she is giving me information that technically she should not disclose. I will make sure to not blow her cover since I’m thankful. I absolutely hate this doctor.. it’s like pulling teeth to even have him answer questions at the actual appointments and then he lies about the procedure after the tests. Lord give me strength to not go to jail when I see this guy face to face

But going to remain calm and just see whatever I can do from here. Haha we’ll I’ll consider you Canadian relative because of those ties hahaa 😊❤️

maley2711 profile image
maley2711 in reply to FormulaRob

you have no option to enlist another Doc's counsel??? fire this guy???

Bronzee profile image
Bronzee in reply to FormulaRob

change your doctor! Surely,he would have a Fellow who could read and take over his cases when he goes on a vacation. Can you get another doctor? PSA is high , get an uro onco .

nobaday profile image
nobaday in reply to WillowHawk

I’m in Vancouver Canada.. You can go to freedom of information at place or hospital scans were done to get copy for your records. It can take a few weeks depending on the place. I have nearly 5 years of records now. The more you collect the longer you live. I was only supposed to have 2 years worth but this November it will be 5.

6357axbz profile image
6357axbz

is you doc an Oncologist?

FormulaRob profile image
FormulaRob in reply to 6357axbz

actually a urologist .. not an oncologist. One of the issues may be that he did not have a family doctor. If he did then they probably would fight for him and demand results.

But I need to work with the current situation as it’s too late to fix the family doctor issue

FormulaRob profile image
FormulaRob

that’s what I’m worried about .. with a PSA like that I don’t think it’s early stage. He says he has no back pain or hip pain .. so maybe that gives some hope.

As for the ALP I don’t know what that is . Is that a level given along with PSA level?

addicted2cycling profile image
addicted2cycling in reply to FormulaRob

FormulaRob wrote --- " ..... Father diagnosed with 226PSA a few months ago .... "

Just keep in mind that PSA is not a DIAGNOSIS and a high PSA does not guarantee there is definitely PCa present.

FormulaRob profile image
FormulaRob in reply to addicted2cycling

thank you this does help me be a little more positive. I do have a slight hope that it’ll all just work out. That slight hope is the only reason I’m able to go to work and function at the moment

Huzzah1 profile image
Huzzah1 in reply to FormulaRob

On a lab report, ALP can be listed as just that or sometimes "Alkaline Phosphatase"

FormulaRob profile image
FormulaRob in reply to Huzzah1

thank you for this. I will check tonight if I can spot either one of these written on any of the reports that we have access to

Startech profile image
Startech

I'm not sure how it works in Canada, but I also have a lame duck oncologist that doesn't seem to have time for quick reports. So I requested my results from the facility (hospital) and got the reports in writing and an actual disk of the scans. After all, they are MY medical records. Good luck.

FormulaRob profile image
FormulaRob in reply to Startech

I completely agree .. I am hoping I can push my dad to go this route as well. I think it’s either this or just sit around waiting helplessly

meowlicious99 profile image
meowlicious99

Thats frustrating, i can imagine what you might be going through.

If its of any mental relief to you , PC is a 'slow moving' cancer meaning a couple of days here and shouldn't make a huge difference.

> without the biopsy it would not make a difference if we read or looked at the results of these first two tests

I don't really agree with this and the nonchalant attitude by the staff.

FormulaRob profile image
FormulaRob in reply to meowlicious99

thank you for the response … I’m in a state of complete anger right now.

That second point of yours does help calm me down so thank you for that. But I would have completely blown up if I was in front of the staff hearing them say what they did today.

cesces profile image
cesces in reply to meowlicious99

this is months not days, and sometimes pc is fast moving.

At a minimum he should get a few weekly psas, then move to monthly psa tests to determine the psa trajectory.

These are cheap tests. No reason not to do them to save pennies.

maley2711 profile image
maley2711 in reply to meowlicious99

If those 2 tests showed metastasis, some Docs might start him on ADT without the biopsy...generally the biopsy would have been done 1st....odd?? will he have an MRI prior to biopsy...highly advise...overall helps detect 25% more significant cancers when a concerning prostate lesion is seen with MRI.

WillowHawk profile image
WillowHawk

maybe you can get oncologist names here or research names, get records go elsewhere. ❤️

FormulaRob profile image
FormulaRob in reply to WillowHawk

I was thinking this too. It’s just a bit of an awkward time with it being a month away from biopsy now. I’m thinking if I go this route as you suggested and I was also thinking .. how much time will I realistically save.. maybe a few weeks if we’re even successful. This is why I wish our specialist was honest from us from the start so it would’ve been a much more viable option to try and go elsewhere for help.

I’m at the point thinking just going to emergency and trying your luck with them explaining the urgency of this due to the high PSA and that the doctor hasn’t even read our results after having them for almost a month. It may not work either but I’m just hoping I can persuade him to try and test his luck with this

treedown profile image
treedown

Here's my thoughts. The results of the bone and CT scan could make the biopsy unnecessary but not sure if the health care system would proceed without out one so that may be out of your hands. When I was diagnosed with PSA 156 early on I expected something to come from every test, scan and Dr visit . It did not work that way as each one just lead to new questions and decisions. The initial process takes time and as hard as it is the time serves its own purpose in my opinion. Once they determine the extent of his disease they will determine the treatment. Remember treatments bring their own issues and PC is a long game for most of us.

Here in the states we have access to our test results via a portal. I get my results back as fast as my Dr. This is good and bad because for those that don't know what they are reading it can cause unnecessary anxiety. We all have been there but not knowing causes me more anxiety and after 3 years I know what I am looking for. If your able to do this in Canada you could post the results here and get much better answer and less opinions. And of course that is just my opinion. I hope this all works out well for your father, try not to let this stop you or him from enjoying and every day to the fullest.

FormulaRob profile image
FormulaRob

there was a test with his liver .. I have the paperwork at home. I’m going to read it when I get home I’m about 4-5 hours and will post what that result shows

FormulaRob profile image
FormulaRob

Thank you for the reply. I do find that very relatable .. expecting results after each test. I guess this whole process is very new to me.. you mention treatments bring it’s own issues.. I don’t quite know or really appreciate what the means quite yet .. but I know I will understand soon enough. Maybe a little uncomfortable with the idea that more bs that I haven’t even thought about will come up.. dang

We do also have a portal similar to the one you mentioned. It’s $12 a year. I’m not sure if the results would be posted there yet if the doctor has not read them.. if guess they would be but without the doctors interpretation. I’m wondering if it’s a good idea or a bad idea for my dad to login and look. I’m not sure how he will handle each piece of information that comes in.. he sort of resorts to alcohol to deal with things that bother him so this could lead to more issues

I will take your advice and make the most of all days/interactions but I gotta say I really feel like I’m in a constant fog .. always down and depressed and worried and lost in thoughts about losing a parent. I can’t imagine a life without either of my parents but these thoughts don’t help at all so It’s a constant battle to not let these thoughts in

cesces profile image
cesces in reply to FormulaRob

"We do also have a portal similar to the one you mentioned. It’s $12 a year. "

Just sign up.

And start keeping a complete set of your own medical records.

What I do is scan then in using a cheap $100 scanner printer. I give each file an 8 digit year, month date number at the front so they are self sorting.

Its do important to keep all your medical records nearby, on hand ans easy to access. Its impossible to do this if you don't start now.

Joeym1040 profile image
Joeym1040 in reply to FormulaRob

in the states all scans are read by a radiologist, not the oncologist or urologist. You should be able to get the results. Or get a new doctor and have him request results. Does your doctor have a patient portal?

Mw921000000 profile image
Mw921000000

Can’t imagine your anger in regards to this situation, I would definitely make an appointment with an oncologist who would act more urgently on matters like this or to a hospital emergency room. My dad didn’t have a primary care doctor either, he went to a urologist who gave him bloodwork and then told him to get to the hospital immediately, once that happened they performed a CT and biopsy and received the result within that day. He didn’t get a bone scan until we took him to a top oncologist, but they already knew based on his numbers it was most likely in the bones so the treatment protocol didn’t change much. With a high PSA like that (same as my dad’s) you could probably get him an appointment right away. Good luck and keep us updated!

FormulaRob profile image
FormulaRob in reply to Mw921000000

ugh I just read your profile .. you’ve had to deal with a lot in terms of going through this with your father. how old are you ? Just curious as I’m only 29 and I feel so incapable of being strong enough to deal with this all. My sister (only sibling) left home years ago and has had zero contact with the family so my mom and I are the ones that need to be strong for him.

My father at 65 years old it feels so young for him to get this sort of news. Your father was even younger I read.. only 58.

Are you in Canada ? I keep thinking of pushing him towards the emergency route .. but my mom thinks me telling him this will ruin his mental state as right now he thinks everything is fine. I may call the hospital tomorrow to see if they would rush a biopsy for him .. if not then I don’t want to scare him

My dad doesn’t seem to have any sort of bone pain or hip pain or anything really other than painful and frequent urination .. so I was hopeful that this meant no spread despite the high PSA. Or at least not to the bones. But boy am I losing hope. My biggest fear is losing my parents and now It’s starting to feel like it may be a reality since it sounds like bone spread is a guarantee at this sort of PSA level. I don’t even know what I’m feeling .. so many emotions at once and I just want to collapse and die . I’m just going to try and do everything that I can .. thank you for the advice and I hope you father is responding well to treatments and hopefully living an otherwise happy life

cesces profile image
cesces in reply to FormulaRob

"but my mom thinks me telling him this will ruin his mental state as right now he thinks everything is fine. "

That's a very scary attitude. The cancer don't care.

David1567 profile image
David1567 in reply to FormulaRob

the pain is not always present. My husband has bone Mets in 6 places, lymph’s and liver and felt great. 😫

FormulaRob profile image
FormulaRob in reply to David1567

oh boy .. I really hope your husband is responding well to treatment and lives a long life despite this huge hurdle

Bronzee profile image
Bronzee in reply to FormulaRob

i have no hip or bone pain but when the cancer recurred my PSA was 239. Petscan with PSMA showed mets to the iliac and one lymph node as well as a tumor growth on the surgical bed. Results came in a week. Pls get an Uro oncologist as they specialize in these matters. i am 62, first DX at 52, recurrence at 61. My PSA is now 0.061.

FormulaRob profile image
FormulaRob in reply to Bronzee

so from your answer is it fair for me to take both negative and positive ? The negative being that no pain doesn’t mean anything .. and the positive being that even still .. they can treat him and can live still well into his 70s ?

I think that because your PSA is now down to 0.061 (congratulations of course that is great to hear brother

Bronzee profile image
Bronzee in reply to FormulaRob

iwould think so. There is always treatment available . If one fails, try another one . I am fortunate to have a good doctor. When the PEt scan show mets ,he scheduled asap for me to have AdT injections and prescribed zytiga / prednisone combi medication. My check up is evry 3-6months ..

do not worry too much, while time is of the essence, i believe you should find a good uro onco to treat your dad. It isa long term fight if treated right. Keep fighting , he may well live up to his 80s..

Tall_Allen profile image
Tall_Allen

In fact, if his bone scan/CT was positive, there is no need for a biopsy. He can be spared an invasive procedure. Usually there is an attending physician to cover for doctors on vacation. Ask to talk to him. (Receptionists know nothing and should not even speak on medical issues).

FormulaRob profile image
FormulaRob in reply to Tall_Allen

this is news to me.. I thought biopsy is the most important test. They literally say they can’t do anything without it. Thank you for this information.. I’ll be calling their office myself tomorrow although it does sound like this office literally just has one dang doctor. I’ll call and check tomorrow regardless.

They also mentioned that I’m panicking for no reason BECAUSE one more month won’t make any difference in terms of cancer development .. they said once it spreads then it doesn’t really matter anymore. It was sort of weird to hear them say this but I just remained focused on the fact that they have wasted so much of our time and I feel sick to my stomach until they can at least starting coming up with a plan for him

Tall_Allen profile image
Tall_Allen in reply to FormulaRob

If you already know it is metastatic, the biopsy won't change any therapy decision - so why do it?

Is this at Princess Margaret? There are many doctors to cover.

FormulaRob profile image
FormulaRob in reply to Tall_Allen

We’ll we don’t know yet .. I’m hoping that even with a 226PSA.. that there is a chance that it has not spread to the bones. Not sure if that’s actually a realistic possibility

Right now his specialist is at Humber Green Medical Centre. He won’t even be sent to princess Margaret until the specialist does the biopsy on November 3rd and then November 23rd is the in person appointment with my dad to review.

I am currently exploring options to try and get him in somehwere quicker but so far had zero success

cesces profile image
cesces in reply to FormulaRob

"They also mentioned that I’m panicking for no reason BECAUSE one more month won’t make any difference in terms of cancer development "

That may be so, but its not really knowable by the doc until he finishes his diagnosis.

And why would you go any place where an expectation of good communication and good service is met with an accusation of panic?

Without burning bridges, get yourself out of there with a few second opinions.

FormulaRob profile image
FormulaRob in reply to cesces

I agree with you completely .. we are being careful to not burn any bridges. We’re trying to get to bring this to the hospital to see if they can do something for us but not sure how successful we will be

Fightinghard profile image
Fightinghard

find a good MO, you will be much more satisfied with your treatment

cesces profile image
cesces

"His biopsy is not until November 3rd"

That's the problem.

With up to date scans the biopsy isn't needed according to many docs.

Go someplace else to get a biopsy. Read aroid here to determine what kind of scans you need.

Maybe you need to go outside the Canadian healthysystem.

You shouldn't jave to resort to the internet to get basic guidance.

FormulaRob profile image
FormulaRob in reply to cesces

if it was not for the forum I would be unable to improve anything. We would be waiting around thinking that they are taking care of us. This is exhausting having to fight for anything I can’t believe this .. we are trying to contact the hospital and seeing if they can expedite things right away with his current results.

But no luck yet.. it seems no one anywhere here is able to just quickly do this biopsy . It’s months waiting no matter what unless we run into the right person I guess. Feeling completely helpless at this moment in time

cesces profile image
cesces in reply to FormulaRob

don't bother trying to change their behavior

Start make second opinion calls elsewhere

spw1 profile image
spw1

Hi, I am sorry to read about the delay and can totally relate to what you are saying. I do not have a solution but remember that my husband's biopsy report took 3 weeks to come back in Ontario Canada and the bone and CT scan were then ordered to be done. Given the report Gleason 8 plus intraductal, and the symptoms along with rising PSA, I had thought that there would be some urgency in doing the scans. But there was not. The urologist then decided that he could not do anything until the scans came back. PSA rose from 50 before biopsy to 96 before he started Casodex. He refused to do any treatment after the biopsy report but after the scan appointment, the same urologist asked my husband if he had given him his first ADT injection yet. I could not believe how casually he treated the whole episode. He had delayed the biopsy by advising us wrongly that prostate cancer was always a slow disease and nothing to worry about. Here we are two years on with an uphill battle as the disease was not caught early and treated quickly and decisively. My advice is to make a note of everything anyone ever says, date and time and remind and chase and call again and again. Someone has to advocate for each patient in the large systems that offer no choice. If PSA was 226 a few months ago, I hope that your father was at least offered medication while he waits the results of the biopsy and scans.

FormulaRob profile image
FormulaRob in reply to spw1

oh man I’m sorry I hear the BS you had to deal with . Our lives in the hands of negligent doctors/specialists.

No medication other than flomax give to him now so really nothing helping .. it’s just left prorgesssing with no help right now and no one cares and no one willing to help and that’s why I’m completely freaking out.

spw1 profile image
spw1 in reply to FormulaRob

When the hormone injection is given, it can spike testosterone levels causing a flare in PSA. To avoid this, they start Casodex pills at least 10 days before. I do not see why your father should not be on Casodex straightaway. Flomax only helps with peeing, nothing to do with beating cancer. Good luck. Please do follow every avenue. When I was unhappy with the urologist, I did not bother complaining to him. I wrote to the GP to ask for a referral to an oncologist by asking difficult questions. The MO we were referred to was very nice and always responded to questions and emails in between appointments. Please keep calm as that is the only way you can navigate these difficult situations. I wish your family the best.

Schwah profile image
Schwah

I would insist your doctors office provide you copies of the Radioligist reports for both scans. You have the right to your own reports. Generally your dr doesn’t review the scans anyway. He reviews the reports of a radiologist that reviewed the actual scans. If you can’t make any sense of the reports just let us know here. Plenty of smart guys that will help you interpret. Sometimes they will only give the scans to a dr hopefully you have a friend who’s some type of dr that they can send snd he can give to you I always use my sister she’s actually a psychiatrist but she’s an MD so they have to give it to her.

Schwah

larry_dammit profile image
larry_dammit

wow, I would be thinking that your family needs a new oncologist, this would not be right in my book. Just saying 🤬

FrankyB4 profile image
FrankyB4

I am in Toronto. I am treated at Sunnybrook. I don’t know where your father’s scans were done but the radiologist has already created a report. If you have access to a hospital portal, you can read them. Then get your father a new doctor. Dr. Robert Nam at Sunnybrook is top notch. And he cares. Email him or his assistant Jen. Be succinct as he is crazy busy. Your father should be treated at Sunnybrook or Princess Margaret. You are right and entitled to demand more for your father. Good luck.

David1567 profile image
David1567

Hi FormulaRob

Good for you finding this forum so quickly for your dad. I wanted to give my Canadian/Ontario perspective on your treatment so far. It stinks. I am also in Toronto area, Vaughan to be exact. And my husband went from the PSA blood test of 29 to his biospsy/CT scan and oncologist referral in less then 3 weeks. Yiur dad has not received the standard of care flow, and your urologist is the problem. Not sure how you can get around him without the family doctor to give another referral, Try getting into a more responsive urologist by giving them the PSA test results and saying please look at his scans.

Calling the hospital he had the scans at to get access online to see the results of the scans your self would also be a very good start. You will know then how urgently you need to move this along. You will know by the CT scan results.

We are dealing with princess Margaret (UHN hospitals ) and Mackenzie health. Both have every blood test and scan online to see for yourself what is going on. Sometime it’s waaay too much transparency but better to know I think. Best wishes for your family , message me if you want any more guidance in this area.

David1567 profile image
David1567 in reply to David1567

you can’t let him wait till Nov 3 to begin any kind of treatment.

FormulaRob profile image
FormulaRob in reply to David1567

thank you for replying .. we as well are in the Vaughan area ! This is very good information. I’m terrified right now which makes decision making difficult with so many emotions but the consensus is that this process they are putting him in is not acceptable and more urgency to the current situation should be given.

I have been told by someone I know that they have a close connection with a doctor from princess margaret and his name is Dr.Hamilton I believe. Where we left off is that he needs to get all the testing done and then they can transfer the results and file over to him to start a plan. Now today I am trying to reach out to this contact to say that they haven’t even read his results and they have his biopsy set for November 3rd.. his results should be posted through his portal which is why I will ask if maybe they can just take over from here and do what they need to do

my brain feels almost paralyzed in fear and emotion but I truly hope I’m doing everything that I can. Posting here helps to be sure I’m not missing something. God I hate the card that was dealt here

David1567 profile image
David1567 in reply to FormulaRob

I was thinking you were from maybe woodbridge, lol. We are in Kleinburg. The results from the CT scan will be with whichever hospital he had them done. Start there. In a phone call you can have access. You would see all the blood test results also. Our oncologist is at Mackenzie hospital and she has been awesome. I would definitely recommend her. He went from having high volume of cancer throughout his body ti low volume in6 months. He also has a oncologist from princess Margaret and her bedside manner stinks but she is needed for any trial access. Our urologist was in Woodbrige he is good also, moved us along quickly even though we didn’t have a clue what was going on. …

FormulaRob profile image
FormulaRob in reply to David1567

yes Woodbridge is where I grew up and parents still live haha… I drive through kleinburg on the way home as I moved out into the nobleton area. I sometimes go for coffee with my gf in the Kleinburg area at Balzac’s.

Do we need to get an oncologist ourself or at some point in this process do they refer you to one ?

The specialist that he currently seeing is located at Humber green medical centre .

David1567 profile image
David1567 in reply to FormulaRob

literally neighbours, haha. So the urologist must be part of Osler hospital on Finch and 27. Not sure what their online system is called but just call the number that you had to do his CT scan and ask how are you able to see the results (it’s your right to see them) they should tell you the online system they use (like maybe osler heslth?) and give you a code #. Then it takes 5 min to set up on your phone., just need birthday /health card etc) And you will see it all, have access to scans and PSA tests in the past when he started having symptoms and not peeing well. Definitely call for this asap. If nothing on the scans/bloodwork you can at least relax a bit.

Also You could take your dad into a walk in , or another family doctor and tell them you have no primary care and you need a urologist and your PSA is at 200+ and they can look at the scans to make a new referral to a urologist. We see dr R Shahani at Vaughan urologists(Rutherford and Jane) . Very busy but gets things done. My suggestions only and it’s a lot, but if you can, these would be good next steps.

DSJo profile image
DSJo

I live in Toronto and am being treated in Toronto. What you are describing is unacceptable. Which hospital are you at? If at UHN you can get all of the results on-line but one has to register online first. Your father's care is taking far too long for someone with a PSA that high. For help, contact the Toronto Prostate Cancer Support group. In fact, they just ran an awareness webinar on biopsies. Their website is self-explanatory. pcstoronto.ca/

One thing I have learned is that one has to advocate for themselves aggressively.

MateoBeach profile image
MateoBeach

(I’m WillowHawk’s brother, with APC, and married to said wonderful Canadian. Québécois anyway.)

The urologist is unacceptably negligent. The scans would have been read by a radiologist the same day they were done, most likely. You can go to the facility where they were done and with the patient’s signed records request get a copy of the reports.

Call the urologists practice and ask for assignment and appointment with a different urologist. If no prompt appointment given, then have your primary provider call or refer him to a different practice. Leaving him in limbo is not acceptable. Paul

FormulaRob profile image
FormulaRob in reply to MateoBeach

hi MateoBeach thank you for reaching out (Willowhawk is truly an amazing person)

Thank you for sharing your view on this. I feel sick to my stomach about having him read these results.. I feel so damn bad knowing that he will experience a lot of bad emotions.. but I love decided it’s necessary and letting him live this next month thinking everything is fine won’t actually help .. it’s time to rip the bandaid off .. this sucks but I think we will have to go and demand the results from this office

Thank you my friend and hope you’re keeping well .. I read through your profile just now and see you’ve had a hell of a journey through this crap.. seeing how strong you’ve been is truly inspiring and gives me hope

NecessarilySo profile image
NecessarilySo

I'm sorry to see your problem. I want to throw out a few ideas that might help. PSA is very high, but it is probably going up exponentially so you need to act now. My ideas follow.

1) When I need scans I always get a copy and review them myself. I pore through them like crazy and come to sometimes bad conclusions that radiologists seem to differ with. So maybe you could do that. It's something useful that you could do on your own while you wait.

2) The timing is driving you crazy, so look for secondary doctors. Maybe your doctor is out in the world somewhere like in Bermuda, oblvious to your problem, so just investigate other doctors and see if you can get the horse out of the quicksand.

3) There are self-treatments you can do with little cost, by yourself. One is heat. 106 degrees F kills ALL cancer cells. Try heat pads, hot showers, and other things you might dream up. Another is lycopenes. Eat lycopene rich foods like V8 juice.

4) Time is of the essence. Cancer cells just grow by subdivision regardless of how you feel. So don't just wait. Do something positive, actively. Your reading this forum is a positive thing. So keep your hopes up by keeping on it.

Texan423 profile image
Texan423

Tell your dad and let him decide. It is frightening but knowledge dissipates fear. Prostate cancer is slow growing in most cases. Personally I had a PSA of 3500, severe pain and metastasis to bones next the spine so surgery was immediate ……that was nearly 4 years ago, metastasis progression from has stopped and PSA is now point 1(.1) , thanks to surgery, radiation and abiraterone acetate/predisone meds, family support, nutritional and exercise changes. We all struggle with this disease but there is clearly hope. Never give up and never keep secrets is my advice.

WillowHawk profile image
WillowHawk

Hi my friend ,

I would suggest you put all that panic in a box. In my opinion it will be very helpful to dad, if you speak about options in a very matter of fact, logical, calm way. If he sees you freaking out, he might lock out your help again. If mom is calmer have her talk to him.

Reread the Toronto posts and the names. Outline a single plan. Not dozens of options. I didn’t see any support for the ER idea. I would ask him to get a Medical Oncologist to manage things - I see that all the time in here. But it sounds to me like he has already decided he wants to wait

Finally, HE is in charge. If he chooses to drink instead that’s his choice. You need to get out your body armor/armour. Sometimes people give themselves 5 or 10 min freakout time/day,if you need it, but then no. “Cancel” that panic feeling. You might even consider some therapy for yourself to help you navigate the long story ahead.

As others have reminded, focus on the quality of life every time you see your family. Such a loving family is wonderful and you can nurture that.

Hugs and love

FormulaRob profile image
FormulaRob in reply to WillowHawk

thank you so much Kate I needed this to smack me back to reality. You’re 100% right.

The ER idea of mine isn’t the best route I see now. Your brother has given me a good idea of what we should do next. Also an oncologist like you mentioned. I thought we would automatically be given one but sounds like we need to be the ones to get one so this I will be telling him as well. Next is seeing if my dad is willing.. you’re right at the end of the day it’s up to him. If I can at least calmly present the options that he has other than waiting .. at least he can decide himself. At least I was able to offer some good advice and ideas thanks to everyone on this forum.

Your post is definitely helping me become grounded and more level headed. I personally do handle things better if I put just a small slot of time aside once in a while as I’m alone to just feel my emotions. When I bottle them up too long then I end up becoming as you saw now.. emotional and unable to make good decisions so I will be sure to take care of my mental state properly so that I can be helpful rather than make anything worse

And it’s a good point you made, he seems more receptive and open to things when I approach him calmly. Today I approached him frantically and he stopped answering my calls/texts. I don’t know why I didn’t notice this myself earlier .. I’ll let it cool down and approach him again in a more confident and calm way tomorrow with a plan of attack rather than waiting.. and we’ll see if he accepts my help this way

Thank you so much you have no idea how much this means to me❤️

Cramlingtonboy profile image
Cramlingtonboy

Ask your GP for a referral to a Toronto Cancer Centre such as Sunnybrook or Princess Margaret. I had a similar experience waiting for a 'Great Man' to come back from his vacation so went that route and never looked back. The 'GM' complained to me when I told him I was moving on, saying that he'd just renovated his office and treatment rooms and who was going to pay for the work. Strange man.

maggiedrum profile image
maggiedrum

Your worries about not getting results of a critical test are warranted. I'm in the US and go to the SCCA (a national recognized respected cancer clinic ) and have an oncologist for my care. In my experience the doctor who ordered the scans would want to see the radiologist's report and then speak with you to interpret them. They can be very confusing to a lay person. The radiologist uses very technical jargon that you MO would understand but you might see something that sounds very scary to you when it really isn't.

However when I got a scan at SCCA a few months ago I was eagerly expecting the results and found out that a radiologist had not yet "read" the results and produced a report. This was about a week after the scans. Usually radiologists will read the scans within a couple of days. I called the clinic and asked why they had not been done and they said they would contact the radiology clinic which is at the local university hospital. I got the report that same day since my call put some urgency on it.

I read it on my own and did see that it indicated some metastatic disease in multiple lymph nodes scattered on the left side of my body. I had to look up definitions for several of the technical terms. I have a pretty good education regarding physiology and all I could say for sure it that the PC was present and where with the reading only saying the individual nodes were either mild or moderate. And, I do know there is a wide variation in how good radiologists are in interpreting PSMA, MRI, and CT scans.

I would think that your husband's report should have been done at least a week after the scans. And the clinic should know who to contact to find out the status. I have found that a one or two month delay in knowing the results of these scans doesn't overly worry many oncologists even if it is nerve wracking to you. If this was right after a prostatectomy they would usually want to do a scan within a day or two so that radiation and/or ADT could be started immediately. They want to limit the area of the radiation as much as possible and don't want the PC to spread outside the area of the prostate if it was a very serious situation like there was evidence the disease had already spread outside the prostate. In my case it was and they took out a lot of things including local lymph nodes just in case.

I suspect another doctor would be very reluctant to try and fill in for your doctor in giving you the results. It would have been nice if your doctor had already made plans for someone else to fill in if he planned a long vacation.

I am not a doctor but from what I have seen, biopsies are done after scans are done so the biopsy can be done in a bone which shows disease. It wouldn't have to be the worst metastasis (if there anywhere). They want to see what the cancer cells are. From what I know they don't diagnose bone metastasis by biopsy. It is a very invasive procedure with possible infection and pain. If anesthesia is required that is an additional potentially harmful part of the procedure. Infections and problems with anesthesia are not real common but do happen.

But you need to get the real scoop from your doctor. I would also encourage a referral to an oncologist rather than a urologist if possible. Your urologist may be exceptional and do as well but I would personally prefer an oncologist.

I wish you and your husband good luck with this scary disease.

maggiedrum profile image
maggiedrum in reply to maggiedrum

When I was speaking about a biopsy I meant a bone biopsy. Your husband should have already had a prostate biopsy a long time ago. These are not very invasive with only a local anesthetic and it is very quick. They took 16 samples from my prostate at the same time on the table and it was done in just a few minutes after going through the paperwork and prep. I would think your MO would want you to have the results of a prostate biopsy very quick.

dmt1121 profile image
dmt1121

I don't have knowledge about how the Canadian socialized healthcare system works. However, I think a second opinion is a good idea with a prostate cancer expert to discuss radiation or surgery, if those are still options. There are usually always options for treatment but you need a urologist and oncologist to guide you and provide options.

Do you own research from reputable university medical centers with prostate cancer clinics and become well-versed in treatments that match your father's conditions (once you get the results back) . Push hard for the test results. The squeaky wheel really does get the grease. Be your father's healthcare advocate and make sure the doctors listen and answer questions. If they don't, change doctors

I would avoid any discusses of condition or options until the doctors have the results and treatment options to discuss with you and you father. Take your time to consider the options. An immediate answer is not necessary,. so take a fews days to think about what direction makes sense. The second opinion may help to guide you by confirming the first doctor's recommended treatment or provide other options.

Good luck!

groundhogy profile image
groundhogy

Just a comment on the industry:

How in the hell does ANY man show up with a PSA of 225 in the age of very cheap PSA tests?

cancerfox profile image
cancerfox

You are saying "father diagnosed with 226PSA a few months ago" and you are still waiting until November for someone to report the results of a bone and CT scan? Wow! Maybe doctors go on vacation, but prostate cancer doesn't. Get access to those results or find a urologist or oncologist that will. The sooner you start treatment, the better chance of a good outcome.

On the positive side, my brother had a PSA of 115 when his doctor finally decided to check it after he experienced problems relieving himself, and the subsequent bone and CT scans only revealed one small spot somewhere in addition to his prostate cancer that they zapped at the same time that they radiated his prostate. His PSA has been virtually zero ever since, and it's been 4 years since he was diagnosed.

Desrochers profile image
Desrochers

I go to the Frank Stronach Center in Newmarket Ont just North of Toronto. I am registered with Patient Connect and get all my test results and reports before my Urologist, Oncologist reads them . I also get all my blood test results from Life Labs normally the next day. It sounds like you may need to change your doctor ask your GP for a referral . Wishing you good luck and many more years.

SteveTheJ profile image
SteveTheJ

Every scan I have had has been followed by a doctor appointment the next day where the results were explained. Also, the facility has a portal where I can download the scan images and radiologist's report.

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