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Fear and Tears !

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User
Posted 20 Oct 2017 at 16:26
My partners journey started with a GP visit a few weeks ago. Blood results showed PSA 27 and enlargement was felt on exam. Hospital appointment, Consultant pulled no punches with his suspicion of cancer following exam. MRI and TRUS arranged. MRI last week, phone call yesterday suggesting Bone Scan needed, arranged for Tuesday. TRUS next Friday. My head says they've looked at the MRI, cancer isn't localised so they are checking bone. Does this make sense or am I catastrophising .....
User
Posted 20 Oct 2017 at 18:17

Probably catastrophising but they don't usually spend money on a bone scan until they know there is cancer so probably best to prepare yourselves for a positive diagnosis.

Download the toolkit from the website or call the number at the top of the page and order it. At least you can start to read up on the different types of diagnosis and what treatments might be offered at what staging. Then if it all turns out to be okay you will be well-armed for future monitoring.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Oct 2017 at 20:12
Hi oh heck!

I know how you feel, my mind was working overtime during the 4 months it took my husband to get a diagnosis. It's extremely difficult to not catastrophize when you don't know what you are dealing with. Hopefully your partner won't have cancer, the consultant's aren't always right. I would think it depends where your hospital is as to what tests they do. My husband only got an mri first then a template biopsy after asking. Had he not he would have just probably had the transrectal biopsy which may or may not have picked up the cancer. To put your mind at rest could you not ask one of the specialist nurses at the hospital the reason for the bone scan? It may be just their protocol there.

Best wishes and good luck.
User
Posted 17 Nov 2017 at 10:50

Hi,


I have just read your post. There might be more information by now. Lyn is probably right but that means they are checking everything so they can offer the best treatment. Don't focus too much on the PSA too much, it is an indicator, some men have high levels of PSA whilst others have low levels. Get in touch with the Prostate Cancer U Specialist Nurse today if you have not already done so and get the excellent literature, it was the best step I made, they got my head sorted in the first phone call. Don't be afraid to ask the Consultants and Doctors questions - remember the only dumb question is the one that's not asked. Make notes and if you don't understand what they are saying ask them to explain it again. It's not easy but try to focus on the positives, remember more men die with prostate cancer than die from it.


All my best wishes and please post any questions you may have. I only know my experiences - I am not an expert, trust the professionals but do ask questions.


NormanA

User
Posted 27 Nov 2017 at 17:19

Slightly lower PSA than mine over ten years ago but same Gleason score. You should appreciate that your husband has a chronic incurable condition, as present medical knowledge suggests. You will probably find that zoladex if similar will be offered, possibly radiation therapy and hopefully chemotherapy too at an early date. You will need to prepare for the possible side effects of these treatments, which will have a marked effect on your relationship. I hope the bone scan is clear but with those numbers, it is likely that the PCa has escaped the prostate capsule. Spread to elsewhere in the body is possible at some future date, if it hasn't occurred already. Take assurance from the fact of my and others' survival with similar numbers, that your husband does not have a death sentence and will be able to live a long and fulfilling life despite the PCa.

Your questions should be designed to understand the treatment plan. I doubt if there will be options available, for example involving surgery, for this would probably be ineffective. Take notes, reflect on what you've been told and ask the oncologist or the oncology nurse anything you are unsure about before you leave the hospital. If you are still unsure, ask us on here. We've been down this road before! Lots of us can help with practical advice.

Good Luck

AC

User
Posted 27 Nov 2017 at 21:17

Hello


It's interesting that those stats are almost identical to mine (including age), with the exception of seminal vesicle and perineural invasion. Mine did however have positive margins with the bladder.  I had the prostatectomy (as strongly advised), then when the positive margins and caner in one of ten lymph nodes were found, it was followed by hormone therapy (Bicalutimide 250mg for two years) and 27 sessions of RT.  It sort of made sense, and was told they were aiming for a cure at both stages.  I'm due the 6 month PSA results and onco visit next week, so we'll see how successful the whole process has been!


Don't know if any of this helps, I think I just wanted to add my experience (with very similar stats) as another voice to what options there are out there.

User
Posted 29 Nov 2017 at 15:00
Our appointment with the oncologist was very positive. We are fortunate to live close to The Christie, a leading cancer research hospital in Manchester, a friend told me that once we had been there everything would calm down ... they were right !
Once again there was some upset in that our local hospital staff had mislead us with incorrect information that created unecessary worry. However, we don't have the energy to focus on that.
Plan of action is hormone treatment for now then brachytherapy and radiotherapy in March. We are calm, we slept, we feel full of hope, we have made some plans, life has regained a sense of normality. We aren't in denial ... we are in the NOW and that is ok until it isn't and I expect a lot of you know exactly how that feels !
User
Posted 29 Nov 2017 at 17:13

Well done, that is exactly the spirit to show. Best wishes

AC

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User
Posted 20 Oct 2017 at 18:15
Good evening. I had a bone scan which revealed nothing. Best to get everything checked out though.

Ulsterman
User
Posted 20 Oct 2017 at 18:17

Probably catastrophising but they don't usually spend money on a bone scan until they know there is cancer so probably best to prepare yourselves for a positive diagnosis.

Download the toolkit from the website or call the number at the top of the page and order it. At least you can start to read up on the different types of diagnosis and what treatments might be offered at what staging. Then if it all turns out to be okay you will be well-armed for future monitoring.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Oct 2017 at 20:12
Hi oh heck!

I know how you feel, my mind was working overtime during the 4 months it took my husband to get a diagnosis. It's extremely difficult to not catastrophize when you don't know what you are dealing with. Hopefully your partner won't have cancer, the consultant's aren't always right. I would think it depends where your hospital is as to what tests they do. My husband only got an mri first then a template biopsy after asking. Had he not he would have just probably had the transrectal biopsy which may or may not have picked up the cancer. To put your mind at rest could you not ask one of the specialist nurses at the hospital the reason for the bone scan? It may be just their protocol there.

Best wishes and good luck.
User
Posted 17 Nov 2017 at 10:46
A very belated thank you for your replies ! We were told yesterday that the cancer is aggressive and Gleason score is 9, 4+5. Oncology appointment next, hormone treatment started. I'm in shock, putting on a brave face and my darling partner is full of positivity. Think I will be using this site a lot in the future.
User
Posted 17 Nov 2017 at 10:50

Hi,


I have just read your post. There might be more information by now. Lyn is probably right but that means they are checking everything so they can offer the best treatment. Don't focus too much on the PSA too much, it is an indicator, some men have high levels of PSA whilst others have low levels. Get in touch with the Prostate Cancer U Specialist Nurse today if you have not already done so and get the excellent literature, it was the best step I made, they got my head sorted in the first phone call. Don't be afraid to ask the Consultants and Doctors questions - remember the only dumb question is the one that's not asked. Make notes and if you don't understand what they are saying ask them to explain it again. It's not easy but try to focus on the positives, remember more men die with prostate cancer than die from it.


All my best wishes and please post any questions you may have. I only know my experiences - I am not an expert, trust the professionals but do ask questions.


NormanA

User
Posted 27 Nov 2017 at 13:13
Hi All,

My partner is 53 years old
Father had PC
Just realised I hadn't updated results so far !
T3b, locally advanced, seminal vesicles, perineural invasion
Gleason 9 (4+5)
Adenocarcinoma in all cores
Bone scan was clear
Hormone treatment started

Our added complication is ulcerative colitis

We are going to see the oncologist for the first time tomorrow. I wondered if you could help me with relevant questions to ask ?
Thank you

Edited by member 27 Nov 2017 at 20:39  | Reason: Not specified

User
Posted 27 Nov 2017 at 17:19

Slightly lower PSA than mine over ten years ago but same Gleason score. You should appreciate that your husband has a chronic incurable condition, as present medical knowledge suggests. You will probably find that zoladex if similar will be offered, possibly radiation therapy and hopefully chemotherapy too at an early date. You will need to prepare for the possible side effects of these treatments, which will have a marked effect on your relationship. I hope the bone scan is clear but with those numbers, it is likely that the PCa has escaped the prostate capsule. Spread to elsewhere in the body is possible at some future date, if it hasn't occurred already. Take assurance from the fact of my and others' survival with similar numbers, that your husband does not have a death sentence and will be able to live a long and fulfilling life despite the PCa.

Your questions should be designed to understand the treatment plan. I doubt if there will be options available, for example involving surgery, for this would probably be ineffective. Take notes, reflect on what you've been told and ask the oncologist or the oncology nurse anything you are unsure about before you leave the hospital. If you are still unsure, ask us on here. We've been down this road before! Lots of us can help with practical advice.

Good Luck

AC

User
Posted 27 Nov 2017 at 21:17

Hello


It's interesting that those stats are almost identical to mine (including age), with the exception of seminal vesicle and perineural invasion. Mine did however have positive margins with the bladder.  I had the prostatectomy (as strongly advised), then when the positive margins and caner in one of ten lymph nodes were found, it was followed by hormone therapy (Bicalutimide 250mg for two years) and 27 sessions of RT.  It sort of made sense, and was told they were aiming for a cure at both stages.  I'm due the 6 month PSA results and onco visit next week, so we'll see how successful the whole process has been!


Don't know if any of this helps, I think I just wanted to add my experience (with very similar stats) as another voice to what options there are out there.

User
Posted 29 Nov 2017 at 15:00
Our appointment with the oncologist was very positive. We are fortunate to live close to The Christie, a leading cancer research hospital in Manchester, a friend told me that once we had been there everything would calm down ... they were right !
Once again there was some upset in that our local hospital staff had mislead us with incorrect information that created unecessary worry. However, we don't have the energy to focus on that.
Plan of action is hormone treatment for now then brachytherapy and radiotherapy in March. We are calm, we slept, we feel full of hope, we have made some plans, life has regained a sense of normality. We aren't in denial ... we are in the NOW and that is ok until it isn't and I expect a lot of you know exactly how that feels !
User
Posted 29 Nov 2017 at 17:13

Well done, that is exactly the spirit to show. Best wishes

AC

 
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