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User
Posted 02 Mar 2018 at 18:02
Hi

My journey started early February 2018, at age 65 with a blood test PSA of 38.3. I went for a test as my 69 year old brother had manifested the usual symptoms of prostate cancer this time last year and he has now been treated by brachytherapy.

I had my DRE and the consultant told me mine was moderately enlarged and firm, so he ordered an MRI scan. This duly showed a lesion and yesterday 1st March I had a full Trans Perennial Template Biopsy. I am waiting for the histology report which I should get by Friday 9th March.

Now retired, I am an avid cyclist, getting out every day to a total of around 800 miles a month. I mentioned this at all stages of my journey, as although not clinically proven, some medical professionals believe it can cause elevated PSA levels in a Blood test. One slightly annoying point is some sources recommend not cycling for 48 hours before a PSA test and no sex, points I didn’t know, so was doing both before my initial blood test! But with the MRI showing a lesion, I suppose this is academic, but I include it as information for others.

So within 4 weeks from blood test to report is a great job by the NHS. I know await my Gleason score with some trepidation.

User
Posted 02 Mar 2018 at 18:02
Hi

My journey started early February 2018, at age 65 with a blood test PSA of 38.3. I went for a test as my 69 year old brother had manifested the usual symptoms of prostate cancer this time last year and he has now been treated by brachytherapy.

I had my DRE and the consultant told me mine was moderately enlarged and firm, so he ordered an MRI scan. This duly showed a lesion and yesterday 1st March I had a full Trans Perennial Template Biopsy. I am waiting for the histology report which I should get by Friday 9th March.

Now retired, I am an avid cyclist, getting out every day to a total of around 800 miles a month. I mentioned this at all stages of my journey, as although not clinically proven, some medical professionals believe it can cause elevated PSA levels in a Blood test. One slightly annoying point is some sources recommend not cycling for 48 hours before a PSA test and no sex, points I didn’t know, so was doing both before my initial blood test! But with the MRI showing a lesion, I suppose this is academic, but I include it as information for others.

So within 4 weeks from blood test to report is a great job by the NHS. I know await my Gleason score with some trepidation.

User
Posted 02 Mar 2018 at 23:34

Professional cyclists have been proven to have a higher than average PSA but with no increased risk of getting prostate cancer. But cycling and sex wouldn't make a normal PSA rise more than a few per cent so would not explain your reading of 38.3 ... even if you were a member of Team Sky!

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

User
Posted 02 Mar 2018 at 23:34

Hi P,

Welcome to this forum , though sorry for the reason that brings you here.
Yes, sex and or cycling a day or two before PSA test is likely to cause increased PSA level but not to the extent above age related PSA experienced by you. However, you will know for future tests! It occurs to me that quite a number of men who join the forum are keen cyclists, motor cyclists or keen runners and I have wondered whether there is a connection or whether this is just a coincidence. Unfortunately, this forum does not have a poll facility as some do, to do a survey.

When your biopsy results are obtained these will be considered along with other indicators and a diagnosis given. You will then be offered one or more treatment options depending on the extent of your cancer. You will doubtless be aware from the experience of your brother about the type of Brachytherapy he had. (There are 2 kinds, low dose with seeds and high dose where radioactive probes are inserted into the prostate and then withdrawn - either of these can be augmented by External Beam Radiation). An alternative is a form of External Beam radiation. All forms of radiation may be preceded by Hormone Therapy which can be administered up to three years post radiation. The other main option where appropriate is surgery. However, if your cancer has spread beyond your Prostate for example to bone, you may instead be offered other treatment starting with Hormone Therapy. So yes, Gleason is important but more so is 'staging', ie whether the cancer is confined to the Prostate and if not how far it has gone from it.

If you have not yet done so, you might find it helpful to obtain or download the 'Toolkit' from the publications section on the main part of this site.

If you let us know your completed diagnosis and what is proposed, we will do our best to answer any questions you may have and provide support.

Edited by member 02 Mar 2018 at 23:36  | Reason: Not specified

Barry
User
Posted 04 Mar 2018 at 20:27

You can have sex as soon as you feel like it. Your wife just needs to be aware that the semen / ejaculate may be a bit red or brown for a few weeks. Messy (especially if you have white sheets) but not harmful and not all men experience it.

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

User
Posted 11 Mar 2018 at 23:30

No. In our case, the letter inviting John to have a scan arrived before the letter inviting him to see a urologist to get the results of his biopsy so we knew what they were going to say before we went into the room. In your case, they may have assumed that you would understand the significance of your prostate being firm and the lesion showing on the scan. The upside is that if you are now told your biopsies were clear, it will be a huge relief and the world will suddenly look a wonderful place. It might simply be that at your hospital, the nurses give ALL results. But I think you are right to prepare yourself for a positive diagnosis just in case.

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

User
Posted 12 Mar 2018 at 09:30
Hi Pallance.

We had a similar situation to yours in that after my husband's biopsy a couple of weeks later we were called in for what we thought was THE result. We still had hope at this point that there was no cancer but of course sat there with nerves jangling fearing the worst.

As there was no indication on the appointment letter that a Macmillan nurse

would see us, when she came out of the room and called us in my legs just about buckled. She was wearing the distinctive black uniform with green piping so I assumed straight away what our news was going to be.

Unfortunately we were told there had been an admin mix up and they did not have the biopsy results yet and had sent the appointment letter in error so we had to go away and await a further appointment.

Not wishing to demean specialist oncology nurses but I personally do not think they should be assigned to you until a doctor gives you the cancer diagnosis. Maybe they think bad news comes better from a nurse. Maybe some people don't mind who tells them and of course it relieves the doctor's of the responsibility. To me it only seems recently that nurses have been delegated to delivering bad news perhaps another result of an overstretched NHS?

Maybe we are just sensitive souls of a generation where you expect a doctor to give you such a life changing diagnosis. Well that's my tuppenny's worth on it rightly or wrongly.

Pallance. What you can do if you feel strongly is phone the hospital or tell the receptionist at your appointment that you would rather see the Consultant or registrar at this stage.The clinics are usually run jointly ( well at our local hospital they were) . The nurse also told us we could see the consultant the next time if we asked when we attended so we did that.

Good luck for when you get your results.

Regards Ann

Edited by member 12 Mar 2018 at 11:27  | Reason: Not specified

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User
Posted 02 Mar 2018 at 23:34

Professional cyclists have been proven to have a higher than average PSA but with no increased risk of getting prostate cancer. But cycling and sex wouldn't make a normal PSA rise more than a few per cent so would not explain your reading of 38.3 ... even if you were a member of Team Sky!

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

User
Posted 02 Mar 2018 at 23:34

Hi P,

Welcome to this forum , though sorry for the reason that brings you here.
Yes, sex and or cycling a day or two before PSA test is likely to cause increased PSA level but not to the extent above age related PSA experienced by you. However, you will know for future tests! It occurs to me that quite a number of men who join the forum are keen cyclists, motor cyclists or keen runners and I have wondered whether there is a connection or whether this is just a coincidence. Unfortunately, this forum does not have a poll facility as some do, to do a survey.

When your biopsy results are obtained these will be considered along with other indicators and a diagnosis given. You will then be offered one or more treatment options depending on the extent of your cancer. You will doubtless be aware from the experience of your brother about the type of Brachytherapy he had. (There are 2 kinds, low dose with seeds and high dose where radioactive probes are inserted into the prostate and then withdrawn - either of these can be augmented by External Beam Radiation). An alternative is a form of External Beam radiation. All forms of radiation may be preceded by Hormone Therapy which can be administered up to three years post radiation. The other main option where appropriate is surgery. However, if your cancer has spread beyond your Prostate for example to bone, you may instead be offered other treatment starting with Hormone Therapy. So yes, Gleason is important but more so is 'staging', ie whether the cancer is confined to the Prostate and if not how far it has gone from it.

If you have not yet done so, you might find it helpful to obtain or download the 'Toolkit' from the publications section on the main part of this site.

If you let us know your completed diagnosis and what is proposed, we will do our best to answer any questions you may have and provide support.

Edited by member 02 Mar 2018 at 23:36  | Reason: Not specified

Barry
User
Posted 04 Mar 2018 at 15:27
Thank you for the responses. I have been looking on the Internet about prostate cancer ever since I got my blood test results showing my PSA of 38.3.

The one thing that stands out to me above all else is the emphasis that no system of diagnosis for prostate cancer is accurate, it’s all a bit “may be”, “could be”

That said I consider myself very lucky not to have been subjected to a TRUS biopsy, as that system of diagnosis seems to have been traumatic to the recipients and likely to cause infection by virtue of its method and is very hit and miss.

My transperineal template biopsy on the other hand was carried out under general anaesthetic with MRI and Ultrasound data available to the consultant and was completely stress and pain free with none of the increased risk of sepsis involved with TRUS.

On removal of my dressing this morning my dear wife counted 25 biopsy punctures, 16 on the side where my lesion is and nine on the other side.

I was interested to read the comment that my PSA reading of 38.3 would not be that high purely as a result of the amount of cycling that I do. I don’t know if there is any clinical data to back up the statement but hopefully that will become available in the future.

Prostate cancer is very topical on the news channels at the moment and there was much comment about a fast tracking system but the most promising thing I have seen is the development of a fast new generation MRI scanner in Scotland.

As my son approaches 40 I will be urging him to get checked sooner rather than later

User
Posted 04 Mar 2018 at 17:23

For your age group the upper threshold for ‘normal’ PSA is 4.0 and the research suggested that professional cyclists have a PSA 9.3% higher than average so that would be a reading of around 4.4

For recreational cyclists, some research has suggested that the PSA is slightly raised for a short time after exercise but that it quickly falls back to the reading taken before the exercise started. Other research has found no difference at all between the before and after readings.

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

User
Posted 04 Mar 2018 at 20:00
For my wife and I the question is when is it OK for us to have sex. There are many views on this and I was hoping to get a fairly definitive answer
User
Posted 04 Mar 2018 at 20:27

You can have sex as soon as you feel like it. Your wife just needs to be aware that the semen / ejaculate may be a bit red or brown for a few weeks. Messy (especially if you have white sheets) but not harmful and not all men experience it.

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

User
Posted 10 Mar 2018 at 01:42
I had my Trans Perennial Template Biopsy on the morning of Thursday 1st March 2018. I thought this was lucky because I know that the multidisciplinary team in the Urology ward meet every Wednesday to discuss the treatment for patients. Having had no communication by Friday, the 9th of March I was a little disappointed but then I got a letter late afternoon telling me I had an appointment with an oncology nurse in the Urology department of my local hospital for Thursday, the 15th of March. There was no other information in the letter just be there for 2:30 PM. Considering I had a PSA level of 38 this leaves me in terrible limbo for at least another six days. I would have expected to have had an appointment with my consultant Urologist to discuss my case and am assuming that they have my biopsy results today and I still have to wait six days and I find this difficult to except
User
Posted 10 Mar 2018 at 10:37

That is just how some hospitals do it. The specialist nurse gives the results and any recommendations / treatment options that the MDT agreed were appropriate.

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

User
Posted 10 Mar 2018 at 23:54

The nurse gave me the biopsy result although she rang and offered an appointment only 1 hour later.  After that I rang her regularly to get the MRI and bone scan results plus potential treatments before I saw the consultant which took 3 weeks. 

Do you feel you can ring her before Thursday and ask if you can find out earlier?  If she's a Macmillan Nurse they're quite accessible but it could depend on what you think your reaction might be to whatever comes, and perhaps it also depends on what they think you need or don't need. 

If it was me I'd ring either the secretary and/or the Macmillan office on Monday morning although they were always on an answer machine and rang back later.  They know some worry more than others and it depends how you are.  I found not knowing far worse than knowing at all stages.  My results were fairly middling but I think I was ready for whatever they said.

User
Posted 11 Mar 2018 at 00:47

I don't think Macmillan nurses would be involved at this stage, more likely the clinically appointed nurse as point of contact.

Barry
User
Posted 11 Mar 2018 at 17:05

In my hospital Macmillan fund the specialist nurses in oncology. It could be the same here.

AC

User
Posted 11 Mar 2018 at 23:13

I think I’d like to make a point that I am a very realistic and Internet savvy person and with all the advice I have received here I’m pretty much resigned to the fact that I have eliminated cycling as a reason for my PSA level being 38.3 so I am left with the personally arrived at and informed information that I have some form of prostate cancer and I just need to know how advanced it is.
In my case I think that the communication method has not been the best. I received a letter on the 7th of March telling me I had an appointment on the 15th of March to see an oncology nurse. Now we all know what an oncology nurses job is, so I am left with a letter telling me it’s a week until my appointment to see a specialist cancer nurse. Till this stage I only have a blood PSA result and having had a transperineal template biopsy which I don’t know the results of, I was waiting to see a consultant but now I’m told I’m going straight to an oncology nurse who deals with treatment for cancer so my point is no one has told me what my biopsy results are but I’ve been steered straight to an oncology nurse cancer specialist.
Not exactly subtle.

User
Posted 11 Mar 2018 at 23:30

No. In our case, the letter inviting John to have a scan arrived before the letter inviting him to see a urologist to get the results of his biopsy so we knew what they were going to say before we went into the room. In your case, they may have assumed that you would understand the significance of your prostate being firm and the lesion showing on the scan. The upside is that if you are now told your biopsies were clear, it will be a huge relief and the world will suddenly look a wonderful place. It might simply be that at your hospital, the nurses give ALL results. But I think you are right to prepare yourself for a positive diagnosis just in case.

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

User
Posted 12 Mar 2018 at 09:30
Hi Pallance.

We had a similar situation to yours in that after my husband's biopsy a couple of weeks later we were called in for what we thought was THE result. We still had hope at this point that there was no cancer but of course sat there with nerves jangling fearing the worst.

As there was no indication on the appointment letter that a Macmillan nurse

would see us, when she came out of the room and called us in my legs just about buckled. She was wearing the distinctive black uniform with green piping so I assumed straight away what our news was going to be.

Unfortunately we were told there had been an admin mix up and they did not have the biopsy results yet and had sent the appointment letter in error so we had to go away and await a further appointment.

Not wishing to demean specialist oncology nurses but I personally do not think they should be assigned to you until a doctor gives you the cancer diagnosis. Maybe they think bad news comes better from a nurse. Maybe some people don't mind who tells them and of course it relieves the doctor's of the responsibility. To me it only seems recently that nurses have been delegated to delivering bad news perhaps another result of an overstretched NHS?

Maybe we are just sensitive souls of a generation where you expect a doctor to give you such a life changing diagnosis. Well that's my tuppenny's worth on it rightly or wrongly.

Pallance. What you can do if you feel strongly is phone the hospital or tell the receptionist at your appointment that you would rather see the Consultant or registrar at this stage.The clinics are usually run jointly ( well at our local hospital they were) . The nurse also told us we could see the consultant the next time if we asked when we attended so we did that.

Good luck for when you get your results.

Regards Ann

Edited by member 12 Mar 2018 at 11:27  | Reason: Not specified

User
Posted 14 Mar 2018 at 13:23
Since my Perennial Template Biopsy on the 1st March I had an aweful 7 days waiting for an appointment to get my result, then a letter telling me I had to wait another 7 days. I accept that analysing so many cores takes time and hospitals are busy places.

I have been on here daily reading posts from members. I’m now of the opinion I should not have been on here so much after my first post, until I had received my diagnosis. Please do not get me wrong this is a fantastic site and I’m sure I will be using it much more once I get my diagnosis tomorrow at the 14 day point but whilst I have been waiting for my diagnosis I have made the mistake of reading too many cases on here which has only served to heighten my anxiety of possible bad news.

I think I would just like to say that personally, would not recommend browsing and reading all the different forum conversations until you have your Gleason score and your core results. Then you come on here post your diagnosis results and get the targeted support that you need.

Be asured, I get my results at 2:30 PM tomorrow and I will be on here later in the day bringing you all up-to-date

 
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