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Step dads diagnosis

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User
Posted 06 Jan 2016 at 20:10
Hi all,

I'm new here and just wanted to talk to people who understand what this is all like. My step dad had his biopsy on his prostate done yesterday, they took 10. He gets the results Tuesday, he got a phone call today asking him to go for two scans on Friday. What I wanted to know is this normal procedure going for the scans I mean? From what I've researched it says you only go for scans if there's a high chance it's spread. I'm absolutely terrified and have been having a mini break down for he last hour. If it's spread I know there's nothing they can do to cure it but the survival rates of the mets cancer came up and I just totally freaked out. I was doing ok when I thought it was just prostate but now I'm really panicking that it's spread. He says he feels well and that he isn't in any pain or anything? But he has arthritis and back pain anyway so I'm not sure he would notice a differance to begin with would he? Thanks all in advance

User
Posted 06 Jan 2016 at 21:45

Hi Steph, sorry that you have to be here but this is the best site to be on for help and information.

It is very worrying when waiting for test results but please try to not let it get to you as nothing changes by doing that except your stress levels.

The two scans will probably be an MRI and a bone scan, these will able to tell your step dad's urologist where any abnormalities are or indeed if there are any. This is standard procedure and it does not imply that he has cancer, if anything is found he will be informed during a consultation with the urologist.

Your step dad would be advised to either take someone with him as a second pair of ears or record the meeting or write down any details given to him. This will help later to be able to take it all in and to understand what he has been told.

It may be that after the scans he will need to have, what they call, a targeted bi-opsy where a suspect area has ten or twelve samples taken for further analysis.

If you come back to this site for advice there are various details that will be useful for others here to be able to help you better.
One being his PSA level. Also his Gleason score and any staging type.

Rest assured you will get good advice here, there are some very knowledgable people who have gone through so much as a PCa patient, Other halves or family members, their experiences are worth getting the benefit from.

You can download the "toolkit" or telephone the number on PCUK site for them to send you one.

Please do not waste your time doing doctor google searches you are already on the best site you can be and if you need to talk to someone then you can call the specialist nurses on here as well.

I know you are going mad with worry but try not to, try to stay positive not negative.

Worry about what "is" not what "might be"

Others will give more advice I am sure.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 06 Jan 2016 at 22:01

Hi Steph, forgot to say that my PCa is confined to the prostate but aggressive,and although I had no diagnosis until after my scans and bi-opsies it does not automatically mean your step dad has PCa, it is just a means to getting answers.

Cheers Chris/ Woody

Life seems different upside down, take another viewpoint

User
Posted 07 Jan 2016 at 02:07

Well whatever site you were looking at that said they only do scans if it has spread was talking absolute rubbish - how could they possibly know it had spread before they did the scans? My guess is that you were looking at an overseas website?

No point having a meltdown - get practical instead. Find out for us what his PSA was - that might be a better and more sane start. If indeed he does have prostate cancer, you will get used to asking and discussing numbers .... PSA scores can go from 0.001 to 12,000, Gleason scores are the G number and go from 6 to 10 but really they are two numbers ranging from 1 - 5 added together, grading is given as a T number which could be anything from 1 - 4 ... the list goes on. As already suggested, download the toolkit from this website and read. Then if he does get the news that he has cancer, you will be calm and well equiped to understand what his results actually mean.

My dad was diagnosed 15 years ago, had treatment and then got on with his life.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Jan 2016 at 05:43

hi steph
just read what trevol has posted, until you get the results their is not a lot you can do, I know its not easy we have all been their, the waiting and the days just drag on
once you know more please share with us we will hold your hand for as long you see neccasary, always have a writeing pad to hand, for any phone calls you may be expecting or to jot down questions you wish to ask, and as already been sad stop going on google, if you need answers ask on here or call the specailist nurses at PC uk they are great nothing will be new to them

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 07 Jan 2016 at 09:00

Hello Steph and welcome from me too.

As the others have already said, no need to panic until you know what's what and even then there are members on here that can talk you through it all.

Without a doubt, every person who responds to you has been on the same road and has experienced what you feel now.
Some, like Trevol, are in the lucky camp, but the initial fear for all of us was the same.

If your stepdad's cancer (given they say a 99% certainty he has it) is contained then it's fairly straightforward and even if there is spread there are a number of men on here with massive PSA scores and metastatic cancer who have been treated and got on and lived and continue to live their lives.

My husband was diagnosed around age 73 and, so far, his treatment seems to be working.

When you know more, please come and share it and we'll give you both all the support you need.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 12 Jan 2016 at 19:30

Sorry the news wasn't better Steph.

I'm sure somebody will give advice re: the hormones.

We can't control the winds - but we can adjust our sails
User
Posted 15 Jan 2016 at 22:44

Hi

Sorry to hear about your stepdad. You mention about the hotspots found on the bone scan, but at this stage it does not seem clear just what these are. It is possible they could be something else beside cancer. Whatever the case I believe a great deal could be done and will be done for your stepdad. Obviously if he can have radiotherapy as well as the hormone therapy this would be great. But even if not, hormone therapy itself is very effective at treating prostate cancer anywhere in the body, not just in the prostate and could prolong his life for a good number of years. Every individual is different, and I believe there is lot that those of us with pca can do to help ourselves by way of diet, appropriate supplements, exercise and having the support of family and friends and other people like the Prostate Cancer UK specialist nurses. My message is whatever the diagnosis there is a very great deal that can be done to help your stepdad.

                                                                        Best wishes

                                                                                     Richard

Show Most Thanked Posts
User
Posted 06 Jan 2016 at 21:45

Hi Steph, sorry that you have to be here but this is the best site to be on for help and information.

It is very worrying when waiting for test results but please try to not let it get to you as nothing changes by doing that except your stress levels.

The two scans will probably be an MRI and a bone scan, these will able to tell your step dad's urologist where any abnormalities are or indeed if there are any. This is standard procedure and it does not imply that he has cancer, if anything is found he will be informed during a consultation with the urologist.

Your step dad would be advised to either take someone with him as a second pair of ears or record the meeting or write down any details given to him. This will help later to be able to take it all in and to understand what he has been told.

It may be that after the scans he will need to have, what they call, a targeted bi-opsy where a suspect area has ten or twelve samples taken for further analysis.

If you come back to this site for advice there are various details that will be useful for others here to be able to help you better.
One being his PSA level. Also his Gleason score and any staging type.

Rest assured you will get good advice here, there are some very knowledgable people who have gone through so much as a PCa patient, Other halves or family members, their experiences are worth getting the benefit from.

You can download the "toolkit" or telephone the number on PCUK site for them to send you one.

Please do not waste your time doing doctor google searches you are already on the best site you can be and if you need to talk to someone then you can call the specialist nurses on here as well.

I know you are going mad with worry but try not to, try to stay positive not negative.

Worry about what "is" not what "might be"

Others will give more advice I am sure.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 06 Jan 2016 at 22:01

Hi Steph, forgot to say that my PCa is confined to the prostate but aggressive,and although I had no diagnosis until after my scans and bi-opsies it does not automatically mean your step dad has PCa, it is just a means to getting answers.

Cheers Chris/ Woody

Life seems different upside down, take another viewpoint

User
Posted 07 Jan 2016 at 02:07

Well whatever site you were looking at that said they only do scans if it has spread was talking absolute rubbish - how could they possibly know it had spread before they did the scans? My guess is that you were looking at an overseas website?

No point having a meltdown - get practical instead. Find out for us what his PSA was - that might be a better and more sane start. If indeed he does have prostate cancer, you will get used to asking and discussing numbers .... PSA scores can go from 0.001 to 12,000, Gleason scores are the G number and go from 6 to 10 but really they are two numbers ranging from 1 - 5 added together, grading is given as a T number which could be anything from 1 - 4 ... the list goes on. As already suggested, download the toolkit from this website and read. Then if he does get the news that he has cancer, you will be calm and well equiped to understand what his results actually mean.

My dad was diagnosed 15 years ago, had treatment and then got on with his life.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Jan 2016 at 05:43

hi steph
just read what trevol has posted, until you get the results their is not a lot you can do, I know its not easy we have all been their, the waiting and the days just drag on
once you know more please share with us we will hold your hand for as long you see neccasary, always have a writeing pad to hand, for any phone calls you may be expecting or to jot down questions you wish to ask, and as already been sad stop going on google, if you need answers ask on here or call the specailist nurses at PC uk they are great nothing will be new to them

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 07 Jan 2016 at 07:27
Hi guys,

Thank you all for your responses. Made me cry but in a good way. It's so reassuring to hear kind and reassuring words from people that understand. In my mad panic I didn't put much detail down. I don't have numbers yet but he was told because of how high his blood test result was, which I assume was his psa that he has a 99% chance of having cancer. His Gleason and t score he won't get until his biopsy results are given I assume. But I will update once known. He is aged 73, been having problems with getting up to wee through the night for 6 months he told me yesterday. It's the waiting that's the worst part isn't it. Once we know we can plan and move forward but at the minute my mind is worse than anything else. The saddest part is my mum and him just moved to Devon about 4 hours away from me to retire so visiting them isn't going to be easy and I won't be able to help them as much as I could have done. Thank you all so much, this really seems like a wonderful site and I imagine will become my lifeline in the near future.

User
Posted 07 Jan 2016 at 09:00

Hello Steph and welcome from me too.

As the others have already said, no need to panic until you know what's what and even then there are members on here that can talk you through it all.

Without a doubt, every person who responds to you has been on the same road and has experienced what you feel now.
Some, like Trevol, are in the lucky camp, but the initial fear for all of us was the same.

If your stepdad's cancer (given they say a 99% certainty he has it) is contained then it's fairly straightforward and even if there is spread there are a number of men on here with massive PSA scores and metastatic cancer who have been treated and got on and lived and continue to live their lives.

My husband was diagnosed around age 73 and, so far, his treatment seems to be working.

When you know more, please come and share it and we'll give you both all the support you need.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 07 Jan 2016 at 17:19
Hi guys,

Quick update my step dad has a psa of 79 and has been put on a tablet called tamsulosinl. Does this mean much?

Edited by member 07 Jan 2016 at 17:23  | Reason: Not specified

User
Posted 07 Jan 2016 at 17:39

Hi Steph
Tamulosin is a tablet that relaxes the prostate and reduces swelling , both of which improve urinary symptoms eg frequency , improper emptying , urgency etc. Prostate swelling can be caused by a number of things not just cancer eg BPH and Prostatitis.
Best wishes
Chris

User
Posted 07 Jan 2016 at 17:50
Ah thank you Chris. Yes that would make sense as the poor man is up so often through the night to go to the toilet. I think his psa seems very high though doesn't it?
User
Posted 07 Jan 2016 at 18:07

Yes it is high Steph but then we've had men with very low PSA who have aggressive cancer so it doesn't automatically follow that high means horror.

Hopefully the Tamsulosin will help with the urinary problems whilst things are being sorted out. Try not to worry. It will sap your strength and tire you out.

XX

We can't control the winds - but we can adjust our sails
User
Posted 07 Jan 2016 at 18:15

My PSA was 43 at the time of my template biopsy but the surgeon still insisted it could be Prostatitis so try not to worry just yet

User
Posted 07 Jan 2016 at 18:16
Speaking to everyone on here has really helped calm me down. Iso thank you to everyone. I will update on Tuesday once the final results are all in. Fingers crossed that it's as good as it can be. X
User
Posted 12 Jan 2016 at 09:34
Today is the day of results. 4.30 this afternoon. Today is going to drag. But will update as soon as I'm able.
User
Posted 12 Jan 2016 at 12:21

Good luck. Got the pen and paper/questions handy?

We can't control the winds - but we can adjust our sails
User
Posted 12 Jan 2016 at 14:39
Unfortunately I can't go with them. They live 4 hours drive from me but I've told my mum to write everything down though.
User
Posted 12 Jan 2016 at 15:39
Hello Steph

My father and my husband both have prostate cancer.

My husband's was contained and surgically removed and us hopefully cured

My father's had spread locally. He was diagnosed 15 years ago, and he is now age 75 and fit and well. He had radiotherapy and hormone therapy. His psa has just started to rise now, but the doctors have told him it's probably going to be old age that finishes him off!!

Don't worry. Even if it's cancer, it can be curable. And even if it's already spread, it's not necessarily a death sentence.

Good luck for this afternoon

Louise

User
Posted 12 Jan 2016 at 18:59
Thank you Louise that is very reassuring to hear. I'm really sorry that you are going through it twice. How rubbish for you. Xx

Ok here goes for the doctors visit. Forgive me if it sounds confusing. I'm confused myself and still a bit lost.

His Gleason score is 9. He has the second most aggressive prostate cancer you can get.

He has been told his bone scan showed two hotspots one in his ribs and one in his big toe and he also has two white spots on his kidneys. His ankle/foot is currently swollen and the doctor said this could be related but won't know until he has an mri and and ultra sound on his kidneys.

He has been started on hormone tablets, after a month he will have 4 weekly hormone injections. These will continue and if the cancer is contained he will have radiotherapy if it isn't contained they will just give him hormone therapy and that's it.

So still waiting for a definite prognosis but the doctor apparently said he was encouraged!

im terrified still and confused. them saying they will just give him hormone therapy won't really extend his life will it?

I'm not holding out much hope and it is still a waiting game for us. But I have said to him that anything he had planned to do, do it. Don't wait. Not because he has cancer but because who knows right?

Edited by member 12 Jan 2016 at 19:08  | Reason: Not specified

User
Posted 12 Jan 2016 at 19:22

hi steph

did anyone ask re having chemo, it may be something your dad may not want to have, have you read this

http://prostatecanceruk.org/about-us/news-and-views/2015/12/publication-of-stampede-results-means-no-more-excuses-for-lack-of-access

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 12 Jan 2016 at 19:30

Sorry the news wasn't better Steph.

I'm sure somebody will give advice re: the hormones.

We can't control the winds - but we can adjust our sails
User
Posted 12 Jan 2016 at 20:20
Hi bladerunner,

Thanks for the link. No they didn't give him the option of chemo at all? Just hormone therapy and radiotherapy if it's contained or just hormone therapy if it's spread. Not sure if that's because of his Gleason score and because they think it wouldn't be worth it? I have passed the link onto my mum though so she can mention it to the consultant. Thank you

User
Posted 12 Jan 2016 at 21:21
Hi Steph,

I'm not an expert on hormone therapy, but as I understand it (and correct me if I'm wrong someone) hormone therapy works by lowering the level of testosterone. Testosterone makes the cancer cells grow faster, so by giving hormones the rate of growth slows down.

Steph, have you downloaded the toolkit on this site? I'm sure there's an absolute mound of stuff on all options, and they're written really well.

Louise

User
Posted 15 Jan 2016 at 22:44

Hi

Sorry to hear about your stepdad. You mention about the hotspots found on the bone scan, but at this stage it does not seem clear just what these are. It is possible they could be something else beside cancer. Whatever the case I believe a great deal could be done and will be done for your stepdad. Obviously if he can have radiotherapy as well as the hormone therapy this would be great. But even if not, hormone therapy itself is very effective at treating prostate cancer anywhere in the body, not just in the prostate and could prolong his life for a good number of years. Every individual is different, and I believe there is lot that those of us with pca can do to help ourselves by way of diet, appropriate supplements, exercise and having the support of family and friends and other people like the Prostate Cancer UK specialist nurses. My message is whatever the diagnosis there is a very great deal that can be done to help your stepdad.

                                                                        Best wishes

                                                                                     Richard

User
Posted 15 Jan 2016 at 23:35
Steph

My hubby has only ever had hormone therapy. Diagnosed Dec 2010, Gleason 10 with spread. There's plenty of hope for your step dad.

Lots of love

Devonmaid xx

User
Posted 16 Jan 2016 at 11:39
Hi devonmaid,

That is such a relief to hear. I'm sorry your going through it too. It's very scarey but it is so reassuring to hear how well hormone therapy actually works. His cancer nurse has been wonderful too and has been on the end of the phone every time we have needed her. Thank you to everyone who has commented, it's armed me with the knowledge I have needed and knowledge is power. I am feeling more optimistic now, as soon as I heard the word cancer that was it panic mode set In. I have told my family about this wonderful site and the positive stories and advice people have given me and I can't thank each of you enough. It's rubbish we are on here to begin with but I'm glad we are all there for each other on this journey.

User
Posted 17 Jan 2016 at 14:12

Hi Steph

Can I add my moral support to you and your stepdad. As others have said, there are many different types of hormone therapy and the toolkit provided by prostatecanceruk.org is very clear and informative. My understanding is that they can keep the lid on the little blighter for many years so important to stay positive.

All the best to you and your family.

 
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