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User
Posted 12 Jan 2020 at 03:27

Hi all,

I thought I posted earlier, maybe it's still somewhere, thus apols if it is. Anyway I had a biopsy on Friday and the doc is convinced I have prostate cancer. Also had a bone scan previously which is indicating some potential issues. The results of the biopsy, that included 6 'cuts' , will be able to confirm things in the next couple of weeks.

I joined here for support and to see how people in the same boat are dealing with this. 

I have never given up in the past but feeling a little defeated at the moment, wondering how I will get through this and maintain a normal life/work balance. My kids are 17 and 16 and just want to be with them as they flourish through life. Also my partner's mother passed 2 years ago and I'm finding it difficult to tell her the full truth but I'll get there.

Anyway that's my life story! Obviously a bit down at present but I'm sure that's normal. Thanks for reading.

User
Posted 12 Jan 2020 at 08:34
Sorry that you find yourself here. Waiting for test results is incredibly stressful for many people. Really all you can do is try not to dwell on it and get through life one day at a time. Once you know what the situation actually is and treatment's been planned you'll probably feel much better about it.

You might want to add a bit of information to your profile, such as your age. It's helpful to know these things when offering advice.

Best wishes,

Chris

User
Posted 12 Jan 2020 at 10:22

Donchadh,

You are at one of the hardest stages emotionally...

It's all new and unknown and frightening.
It's out of your control.
What and when do you tell other people (friends/family), particularly children?
Do you need someone (friend/family) to confide in for emotional support?

Everyone has difficulty dealing with this, and it would be very surprising if you didn't feel anxious just now.

Many of us have been there, and even for those of us who were diagnosed with PCa, it quickly gets better. As you learn more about it, it stops being new and unknown, and therefore not so frightening. As you get your full diagnosis and treatment options become clear, you start taking back control of your life again. When you reach the point where you can tell friends/family, they will go through this shock as well, but will quickly come to support you too. Sometimes it really helps to tell one person first, someone you think might support you (even just by listening), but not fall apart themselves.

Personally, I chose to wait until my diagnosis had gone far enough to have a rough idea of prognosis before I told anyone. I thought I could hold myself together, but didn't have the reserve capacity to hold anyone else together at that time. However, this is deeply personal, and many people will need the support of their partner or a friend through the diagnosis.

Children bring another issue - what to tell them, and when to tell them, and what they will understand at different ages. Children will detect there's some issue, and you don't really have the option of not telling them (they might assume something bad like you're splitting up, and possibly it's their own fault). Get a copy of this excellent book from your Macmillan cancer centre, or read it online:

Talking to Children and Teenagers when an Adult has Cancer

Also, look for a local support group near you - these can be very useful.

Find Local Support Groups

For more immediate support, there are the PCUK nurses (number at top of this page). Also, local support groups sometimes provide people to talk with 1-2-1 between meetings, and you could also contact a Macmillan nurse at your hospital (you will probably be assigned one if you get a cancer diagnosis, but that might not have happened yet, so ask).

And there's us too, of course.

Edited by member 12 Jan 2020 at 10:24  | Reason: Not specified

User
Posted 12 Jan 2020 at 11:03
Hi D,

It does help others make more meaningful replies if you add to your Profile as much information as possible to include your PSA and how you came to be tested, then as various tests/scans were done the results and when available your complete diagnosis. Men diagnosed with PCa are offered various kinds of treatment according to their diagnosis and as affects any other problems they may have. I suggest you download or obtain a copy of the "Tool Kit" from the publications section of this Charity. Not only does it cover various treatments, it provides a lot of basic information about the disease. Many men find that this knowledge helps them come to terms with the disease which for most men, particularly those diagnosed at an early stage can be 'cured' often referred to as 'being in remission' or through treatment have the progress of the disease very significantly slowed down.

If you read the Profiles/Bios of men here (by clicking on their Avatars, you will see many have been here for many years, although as on any forum on health or for example cars it is disproportionately populated by those who have problems so you hear little of those who have no problems or whose situation has been resolved.

Barry
User
Posted 12 Jan 2020 at 19:09

Originally Posted by: Online Community Member

it is disproportionately populated by those who have problems so you hear little of those who have no problems or whose situation has been resolved.

An excellent point. When I started looking at biographies on this forum I started finding loads of people with psa 10 or less had gone on to develop serious cancer, when statistics say it should be only about 25% of people with this lowish psa that have cancer. Of course the vast majority of men with psa 10 or below don't have cancer so never join this forum. This is an excellent forum but it is not representative of PCa for the vast majority of people. 

Dave

Show Most Thanked Posts
User
Posted 12 Jan 2020 at 08:34
Sorry that you find yourself here. Waiting for test results is incredibly stressful for many people. Really all you can do is try not to dwell on it and get through life one day at a time. Once you know what the situation actually is and treatment's been planned you'll probably feel much better about it.

You might want to add a bit of information to your profile, such as your age. It's helpful to know these things when offering advice.

Best wishes,

Chris

User
Posted 12 Jan 2020 at 10:22

Donchadh,

You are at one of the hardest stages emotionally...

It's all new and unknown and frightening.
It's out of your control.
What and when do you tell other people (friends/family), particularly children?
Do you need someone (friend/family) to confide in for emotional support?

Everyone has difficulty dealing with this, and it would be very surprising if you didn't feel anxious just now.

Many of us have been there, and even for those of us who were diagnosed with PCa, it quickly gets better. As you learn more about it, it stops being new and unknown, and therefore not so frightening. As you get your full diagnosis and treatment options become clear, you start taking back control of your life again. When you reach the point where you can tell friends/family, they will go through this shock as well, but will quickly come to support you too. Sometimes it really helps to tell one person first, someone you think might support you (even just by listening), but not fall apart themselves.

Personally, I chose to wait until my diagnosis had gone far enough to have a rough idea of prognosis before I told anyone. I thought I could hold myself together, but didn't have the reserve capacity to hold anyone else together at that time. However, this is deeply personal, and many people will need the support of their partner or a friend through the diagnosis.

Children bring another issue - what to tell them, and when to tell them, and what they will understand at different ages. Children will detect there's some issue, and you don't really have the option of not telling them (they might assume something bad like you're splitting up, and possibly it's their own fault). Get a copy of this excellent book from your Macmillan cancer centre, or read it online:

Talking to Children and Teenagers when an Adult has Cancer

Also, look for a local support group near you - these can be very useful.

Find Local Support Groups

For more immediate support, there are the PCUK nurses (number at top of this page). Also, local support groups sometimes provide people to talk with 1-2-1 between meetings, and you could also contact a Macmillan nurse at your hospital (you will probably be assigned one if you get a cancer diagnosis, but that might not have happened yet, so ask).

And there's us too, of course.

Edited by member 12 Jan 2020 at 10:24  | Reason: Not specified

User
Posted 12 Jan 2020 at 11:03
Hi D,

It does help others make more meaningful replies if you add to your Profile as much information as possible to include your PSA and how you came to be tested, then as various tests/scans were done the results and when available your complete diagnosis. Men diagnosed with PCa are offered various kinds of treatment according to their diagnosis and as affects any other problems they may have. I suggest you download or obtain a copy of the "Tool Kit" from the publications section of this Charity. Not only does it cover various treatments, it provides a lot of basic information about the disease. Many men find that this knowledge helps them come to terms with the disease which for most men, particularly those diagnosed at an early stage can be 'cured' often referred to as 'being in remission' or through treatment have the progress of the disease very significantly slowed down.

If you read the Profiles/Bios of men here (by clicking on their Avatars, you will see many have been here for many years, although as on any forum on health or for example cars it is disproportionately populated by those who have problems so you hear little of those who have no problems or whose situation has been resolved.

Barry
User
Posted 12 Jan 2020 at 19:09

Originally Posted by: Online Community Member

it is disproportionately populated by those who have problems so you hear little of those who have no problems or whose situation has been resolved.

An excellent point. When I started looking at biographies on this forum I started finding loads of people with psa 10 or less had gone on to develop serious cancer, when statistics say it should be only about 25% of people with this lowish psa that have cancer. Of course the vast majority of men with psa 10 or below don't have cancer so never join this forum. This is an excellent forum but it is not representative of PCa for the vast majority of people. 

Dave

User
Posted 12 Jan 2020 at 23:01

Thanks to you all for replying. I note  it'sa I should provide more info so will try...

From Nov onwards I developed a growing need to use the toilet and went to see the GP early Dec. Got a rectal exam and told my prostate was very large. Since then have been in the process of going for a bone scan and just last Friday referral to urology for a biopsy. The consultant explained it showed it was very much appearing as cancerous. I was prescribed hormone tablets that are for PC. They have started making a difference. The hospital also gave me a load of pads and some S&M type net pants to hold the pads up - joking apart though I have experienced the need to sit down to pee as a no 1 just prompts a no 2 and have soiled a few times since this has all commenced.  However 3 days of taking tablets has reduced incontinence considerably. The PSA level was 200+ but the consultant said that people show lvls over 1000. Bone scan also identified some potential issues and my stomach front right was potentially feeling a bit hard. Once the biopsy gets analysed then should have a means to go forward and do what can be done to fight towards keeping a normal life.

I will await my results before I let my family know the truth though as would prefer to tell them the exact picture and not give misleading info.

I don't think anxiety is here and actually just feeling calm and accepting my situation. Another chapter with another hill to climb but I'll get there.

Again thanks for your replies, it's very reassuring actually and has probably helped me a lot to reduce anxiety.. mind you once I get the results I may just end being prescribed a straight jacket 😁

User
Posted 13 Jan 2020 at 01:47

Thanks donchadh, as others have said your biography info starts to give a picture of what may be happening. So thank you for posting it.

My first psa test came back at just under 30. I had no idea if that was high or low. Google then made it clear that anything over 4 was worthy of investigation. I mentioned to doctor I had been cycling the day before the test, she said that would have raised psa by about 0.5, so basically my psa was in the high 20s. A bit more research said people with psa 4 had a10% chance of PCa, psa 10=25% chance, psa 20=50%, and psa 30=pretty much 100% chance. I still hung on to the hope that mid to high 20s was probably 90% chance and I might be in the lucky 10%. See my profile to see that I cope with this disease by convincing myself that I'll be the lucky one.

So I think you and the doctor already know that your test results are probably not going to be what you want to hear. 

I can see you have a sense of humour. You will need it. I find making a joke, of my predicament helps a lot. 

I'm on ADT (hormone therapy): we've just bought a puppy, and he will be going to the vet's soon for the snip. I joke to the girlfriend that I'm only taking him to the vet's because I'm jealous that he still has balls. She laughs, I laugh, but I don't think the dog finds it funny! 

I don't often get anxious, I do occasionally wake in the middle of the night with a terrible sense of doom, but once I open my eyes it just disappears, I guess I'm lucky. 

Your hormone treatment will almost certainly get you in to a good place as far as incontinence goes, so once that immediate problem is over and you have all the results you will be able to talk about treatment. 

 I kept all my family informed from the first test result. There are no children in my family if there were I think I would have had to be a lot more cautious. I told one or two close friends whilst I was being tested. But only made it more general knowledge to all my acquaintances once I was fully diagnosed. I talk very openly to my friends, in a light hearted way about PCa. By raising awareness it may save lives. 

Edited by member 13 Jan 2020 at 16:22  | Reason: Not specified

Dave

User
Posted 13 Jan 2020 at 04:26
If the tablets you have been given are in reality capsules (probably a brand of Tamsulosin Hydrochloride), this is to help with the peeing side. If they are Bicalutamide tablets, these are a form of HT sometimes replaced after an initial short course by another form of HT such as Zoladex. Another route is to preface a major course of HT by a short course of Cyproterone Acetate which acts as anti flare. So both of these Hormone Therapy (HT) possibilities if applicable, mean you have started cancer treatment which should restrain any spread.

h

Barry
 
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