What would you do ?

User

Posted 06 Dec 2018 at 18:01

Just an update:

After my appointment with the URO Doc end of August and with a PSA level of 6.2 it was agreed that we would hold off on biopsy (as they were unable to offer me a Template biopsy) and that we would look at my levels end of November and if the levels have gone above 6.5 I agreed that I would have the TRUS Biopsy or I would pay to have the Template Biopsy.

I have been taken some herbal extracts and advised the Doctor of these. He was a German doctor and was familiar with one of the extracts called Pygeum Bark and told me that in Europe the herb is prescribed to patients diagnosed with BPH. I have been taken this herb in a 500mg capsule standardised 30:1 along with Stinging Nettle Root 20:1 for the last 4 months. It has helped me enormously with my symptoms.

I have just had my PSA results back from my GP at 4.1.

I have my Urology appointment on Monday and hopefully we will carry on with the monitoring program.

User

Posted 06 Dec 2018 at 18:33

Make sure that your urologist is aware of what you are taking. Pygeum may falsely lower your PSA - in other words, it is possible that your true PSA may have risen significantly but is being masked by the supplements you are taking.

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

User

Posted 06 Dec 2018 at 18:43

Hi Brian

I presume you are in England, despite you having a German doctor.

Personally, I would not set much store by these herbal remedies although a friend of mine has researched this intensively for the past four years and he feels there may be some benefit from CBD oil.

If it comes to it, do stick out for an NHS template biopsy. Unless you want to ‘enjoy’ another one a few months later.

Cheers, John

User

Posted 07 Dec 2018 at 14:07

Thanks for your post

My Urology Doctor is aware of the herbal extracts I am taking it was him that told me that it is prescribed in Europe for treating BPH.

He didn't say anything about it lowering PSA levels falsely.

I have an appointment with him on Monday and I will ask him then

Many Thanks

User

Posted 07 Dec 2018 at 14:18

Thanks John,

Yes I am based in England, my URO Doctor is German.

I have found that the herbal remedies have worked for me and have reduced the symptoms I was having prior to taking them, however I have cut out Dairy products and am paying attention to my diet and exercise.

I understand that everyone is different and am not suggesting that they would suit everyone.

Thanks for your post John

User

Posted 14 Jun 2019 at 10:20

Following up on my previous posts to the unbelievable situation I know find myself in.

During Sepember & October 2018 I was experiencing Unexplianed pain throughout various location throughout my body. I had various appointments throughout those months and was prescribed a variety of painkillers but the pain and discomfort continued. Eventually I was referred for an X ray of the pelvis & spine this was carried out on the 31st October 2018. The results came back showing no signs of anything abnormal and that there is nothing to worry about as everything shown on the X Ray is degenerative wear which you would associate with a man of my age 67. I asked at this point if this pain could be associated with the 17mm lesion that was found in my right femur and was told if there was a problem then they would have reacted as I heard nothing I assumed everything that the X Ray was stating was in order.

The pain continued during November & December which resulted in many visits back & forth to GP on each appointment I kept mentioning this 17mm lesion as this was giving me concern. The doctor said I may benefit from some Physio and booked 6 appointments that took me from November until after the Christmas period, the Physio did no good whatever and told the doctor such. I had a PSA clinic appointment booked as documented above.

User

Posted 14 Jun 2019 at 10:52

Is there any more to this post? What is the unbelievable situation that you are now in????

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

User

Posted 14 Jun 2019 at 11:18

Yes there is much much more to this post but the district nurse has called by and I have had to break away from posting as I have appointments this afternoon. Please be patient and I will carry on the post when I can

User

Posted 14 Jun 2019 at 15:35

So following up & to cut a long story short. When I attended the December appointment I once again asked about the 17mm lesion that the MRI had picked up at the May scan and they said they had no concerns & since PSA was boarder line normal and recent MRI had come back PI-RADS 2 score they agreed to take me of the cancer pathway and review in 3 months time taking PSA test one week before. This appointment was made for April 14th.

As explained on earlier post very painful low back radiating all over body resulting in many GP visits and many combinations of pain killing drugs & Physio visits. Eventually my GP referred me for an urgent MRI scan of pelvis & spine. This appointment took 6 weeks to come through during which time many more visits to GP.

The MRI scan took place on Sunday 7th April, I had a PSA test booked in at GP the next day 8th. At the scan I went in feet first for 20 mins & then head first for a further 20mins. The following day I took a call from my GP informing me that the scan had picked up cancer in my spine from L2 a significant mass had been detected. Immediate appointments followed with multi disapline team. Radiology, urology & oncology and a total of no less then 9 X scans and tests followed up within 2 weeks of the original scan to try to locate the primary source of the cancer as it was suggested the 17mm lesion was a secondary source, at the time of the scans the CAT scan picked up many secondary lesions thoughout my body however they are unable to find the primary source and the ultra scan shows no signs of cancer in my major organs. After a 5 week hospital and hospice stay I have been discharged with the following diagnosis of metastatic cancer of unknown source which has caused a metastatic spinal cord compression for which RT was given while investigation into primary cancer site is on going but any treatment is palatine and is likely to be limited due to the advanced disease state. In terms of prognosis months due to spinal cord compression. Physically deteriorating rapidly, likely to continue to progressing to wards terminal phase.

User

Posted 14 Jun 2019 at 16:03

That's awful news, Brian. I'm so sorry to hear it. Has your medical treatment managed to make you pain-free now?

Best wishes,

Chris

User

Posted 14 Jun 2019 at 16:21

Brian, I'm really sorry to hear this.

Has there been any suggestion of taking a biopsy of one of the mets to identify what the cell type and origin is? I'm thinking this might lead on to a hormone therapy or chemo to target it, or even a trial if there's a suitable one available for that cancer type.

Edited by member 14 Jun 2019 at 16:21 | Reason: Not specified

User

Posted 14 Jun 2019 at 17:35

Thankfully hospice medical team have managed to keep the pain in check with the morphine 100g slow burner twice a day and I have morphine 15 ml per hour if needed up to 110 ml .

Unfortunately they are unable to offer me any treatment as they are unable to locate a primary source as all organs appear to be clear of any cancer and it would suggest that the 17mm lesion found on the MRI prostate scan last May is in fact the source and started in the femur. With no treatment plan available and we have already tried RT the only treatment they are giving is to control pain from the bone cancer. We are looking into the possibility of a bone biopsy of the femur. But it does at this stage look like only palative treatment is available as the cancer is so far advanced. It must be an aggressive type to have advanced so far in 4 to 5 months.

thank you for your comments

User

Posted 14 Jun 2019 at 21:20

Terrible news Brian. I am so sorry for you and hope that at least pain can be controlled. I think your case is quite unusual because where there is PCa outside the Prostate, there is usually evidence of cancer within the Prostate. This is an uninformed and maybe naive thought which would doubtless have drastic consequences and involve other procedures and the position of the tumour in the Femur might make this impossible anyway but I wonder whether the affected part with the tumour could be cut away and rebuilt. This would leave the cancer in the spine which they might be able to treat with a combination of surgery and RT regardless of what RT already given. Even if this was all doable, there is no guarantee that it would work for long and you might not wish to undergo all that is involved but drastic situations can require drastic actions for a chance of success or to buy more time and from what you say it appears the consultant has no suggestions. (I assume the RT previously given was to the Femur and not the spine).

Barry

User

Posted 14 Jun 2019 at 21:50

If it was prostate cancer, you would be put on hormone therapy. As far as I can see, you've never been on hormone therapy, so it should be effective very quickly.

Given they haven't done this, I guess they don't think it's prostate cancer, but some other cancer.

Obviously, I don't have all your medical details, but given what you've said, I would push to get it identified via biopsy - you have nothing to lose. Once that's done, there's a chance it might open the door for some systemic treatments.

User

Posted 15 Jun 2019 at 09:44

Yes, Andy 32 they did start me on Hormone therapy the very next day and completed the whole course whilst other test were being carried out. Prostate cancer was ruled out as they carried on trying to locate where the primary source of the cancer started. It would appear as all organs were showing clear that they suspect the primary source could well have been the 17mm lesion showing in the femur on the first MRI scan of last year and that left unchecked has now left me in this current situation

Thank you for your post

User

Posted 15 Jun 2019 at 10:04

Thank you, Old Barry, The original scan carried out on May 18 found no sign of prostate cancer and that the prostate was a BPH. It did show a 17mm lesion in my right femur and was dismissed by them at the time.

Targeted RT to the spine area was carried out over 5 X sessions directed towards T2 area of spine.

The cancer in the spinal area has been classified as "untreatable" and advanced the prognosis is months with palative care pain control support provided by the hospice. The speed of which this happening is what I can't get my head around. From October 31st X Ray showing no abnormal images and doctors stating everything normal for a man of my age. Then April 7th spine cancer advanced to the stages of un cure able

Thank you for your post

User

Posted 15 Jun 2019 at 23:57

Thank you for clarifying your situation Brian. Perhaps those involved in your case were unable to truly establish how far your cancer had advanced from what they had or it could have been one of the few cases where cancer does spread very quickly and unpredictably or a combination of both. The devastating thing is your prognosis now and I hope you have the best care possible in the circumstances.

Barry

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