I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

treatment dilemma and apathy towards the diagnosis

User
Posted 30 Nov 2017 at 09:49

Hello all,


            I have recently been diagnosed with prostate cancer and I had a gleason score of 7 and the mri showed no spreading but when my specialist had a teleconference with the main area consultant he has upgraded my score and I am to go in for a bone scan. I have several things that are on my mind. When I was given the diagnosis I just said ok and the consultant asked if I had any questions and I said no and I have had that general apathy about it ever since. Am I alone in not worrying about it and just dealing with it in my mind like it is a cold or something similarly trivial?


             When the nurse rang me yesterday to tell me about the upgrade and to arrange the bone scan she said I should be ready to tell them what treatment path I would like to follow but I haven't really thought about it that seriously and I really don't know what I want. Is it usual to deal with your diagnosis and impending treatment like this?

User
Posted 30 Nov 2017 at 10:56

Hello Steve and welcome to the site


I would think the reaction of a lot of people would be panic although some are more matter of fact about it.


You call it apathy,it is just acceptance perhaps?


If it is that then the next step would be for you to be more proactive.


Nobody is going to (can) make any decisions for you and you should be trying to base yours on as much information as you can gather.


Go to the Publications on this site and read through the relevant treatments and possible side effects of each.


It would help member to advise you if you could give the actual score of your 7. ie 3+4 or 4 + 3 = 7 as it does make a but of difference to advice given.


Have you been given a grading at all? Do you know if the cancer is contained or near the wall of the prostate. If you don', t then they are all questions you need answers to.


There is no point in being truly apathetic about it (and it may well be delayed shock you are experiencing rather than just not caring) since it has to be dealt with.


For some men with lowish Gleason (and if yours is 3 + 4 and contained then it is lowish) then there is the option of doing nothing at all apart from being actively monitored. It is called Active Surveillance (AS) and would give you time to adjust to the news and weigh up your options.


One bit of advice I would give, is that if there is no urgency, then you don't jump in feet first and go with the first option suggested to you by the doctors.
You are the one who will be living with any possible consequences.


Is there family history of PC. ?


Remind your son that he will need to take on board that at some stage he should get  checked.


I hope you get more replies with advice.


Doing nothing will achieve nothing, except reducing further treatment options further down the line which may be harsher than you could be eligible for now.


Best Wishes


Sandra


*****

Edited by member 30 Nov 2017 at 10:58  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 30 Nov 2017 at 13:46

I well remember waiting for the biopsy results but already having made up my mind that I had PCa. When the day came for the results the urologist said that he had some bad news for me and confirmed that I had cancer. My reaction to him was 'That's OK, I thought by the look on your face that there was something else wrong'. As Johsan says, this was simply acceptance.


We had a discussion about the PCa and possible treatments and I then went away and looked at information from this site about how treatments worked and the possible side effects.


When I went back to meet the oncologist and surgeon they answered my questions and took time to draw pictures and explain in words of one syllable the pros and cons of different treatments and importantly the potential side effects of both. Once I felt comfortable about the situation I made my decisions and off we went.


So a bit like you, I have never been worried or particularly upset about having the disease or the side effects that I have had and continue to have as I knew they could happen. I am where I am and understand how I got here. Thanks to the lovely people on this site and the medical staff that I deal with I have a pretty good idea of how the future might pan out but then there are loads of other things that could happen to me in the meantime totally unrelated to the cancer.


I would echo everything that Johsan has said about taking time to find out information now as you have to take responsibility for your treatment decisions but that doesn't equate to having to panic about it. 


All the best with your decision making.

User
Posted 30 Nov 2017 at 17:08

There's no right way to respond.

I was diagnosed on the 26th October and felt positive and optimistic. The consultant, who had a medical student with him looked a bit disappointed. Possible they wanted a bit more drama to the "you've got cancer" announcement.

Two weeks later I had a complete meltdown at work. The one place where I wanted to be cheerful, although everyone was really supportive.

Take each day at a time.

Good luck

User
Posted 30 Nov 2017 at 18:29

For many diseases you just expect the doctor to treat you with little or no input from you the patient. With Prostate Cancer (PCa), there are often two or more treatment options and because these vary in application and potential side effects consultants may recommend a particular one but often leave it to the patient to decide what he prefers or to put it another way, what he dislikes the idea of the least. Unfortunately, all treatments have some downside but at least can buy you more time and for some a cure.

Best wishes on your cancer journey. Prepare for it well.

Barry
User
Posted 01 Dec 2017 at 15:11

Steve, I have just had the robot assisted prostatectomy (28th October) following diagnosis of a Gleason score of 6 (since upgraded to 7 following the pathology on the removed prostate). It was a shock when I received the diagnosis of cancer as I only had a PSA of 3.9, but the consultant said, with the normal size of my prostate, it should only be around 2.2 - that was why he advised the biopsy. I was offered radiation-therapy, the operation or 5 years of observation, but chose the operation due to a family history of prostate cancer - my father has it and it has spread to his bones and his brother died from prostate cancer complications earlier this year. My cancer was confined to the prostate, thankfully, but, as per my family history, it can spread if left alone.


I"m 60 years old and reasonably fit, and the operation was very successful and I have no erectile issues and am getting the bladder back under control (dry at night for a week). I know it's a big decision, but what ever you decide must be right for you and your circumstances. The operation is now routine and I don't feel any worse now, at the 5 week point,  than I did before the operation.


One other thing to bear in mind is that, if you opt for radiation therapy, surgeons are loath to operate to remove the prostate afterwards because, as my surgeon said, the radiation welds the prostate in place and it can be very difficult to remove it. But, if you have the operation and need radiation therapy afterwards, that is not an issue.


If you do opt for the operation, please make sure you are strict with the pelvic floor exercises - they really do help.


Best of luck to you,


Pete

User
Posted 01 Dec 2017 at 19:16

Thank you all for your replies and your helpful suggestions and advice. With regard to the Gleason score I believe on the letter from the urologist at Barnsley hospital  it said my score was 3-4 but after the biopsy results were discussed with a more senior consultant at Sheffield it was in the words of the nurse upgraded to 4-? (I missed that bit). During that phone call she said I would now need a bone scan and 30 mins later I had a call booking me in for the next day which was yesterday. So now I am just waiting on the results of that and then I believe I have to decide the direction I wish to go with regard to treatment. I shall spend the weekend reading through all the options available and will then be able to make an informed decision. Thank you all again for your replies and encouragement.


 


Steve xiii

User
Posted 01 Dec 2017 at 23:26

HI Steve, Your apathy could be the way you're shutting it out and it might be alright to do that.  However this is serious stuff and decisions are needed with conscious thought.  


Having a bone scan isn't unusual, I thought it was unusual not to have one. 


The nurse gave you good advice in my opinion.   Decide what your preferences are before the meeting, listen to what the consultant is offering, it might not be the full range. Let the consultant know your worries and ask what he thinks is the best. Don't waste any time trying to put it off.


For example you might prefer to wait and see, don't we all think that sounds easy.  But if it's 4+3 it will probably be better to treat it and if it's 4+4 probably better to have it removed asap.  That's just my thinking, I'm not medically qualified.


Have a list of questions as you won't think of things at the time.


My score was increased from 4+3 before the op to 4+4  after the op.


Hope that's some help.


Regards
Peter


 


 


 


 

User
Posted 23 Dec 2017 at 21:40

How is your initial psa? If it is beneath 7 ng/ml, it is very rare that you already have bony metastasis now.

User
Posted 23 Dec 2017 at 23:13
Originally Posted by: Online Community Member

How is your initial psa? If it is beneath 7 ng/ml, it is very rare that you already have bony metastasis now.



Wrong again Safinamo, Si on here was diagnosed with a PSA of just over 3 and had bone mets all over his body. You do not know better than Steve's specialists. As it happens, Steve hasn't signed in since the day after his bone scan so may still be waiting for his results?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
Forum Jump  
©2018 Prostate Cancer UK