AS Active Surveillance

Long story but In the end at nearly 80 I was unwilling to follow the treatment path offered. ADT, TURPS, Radiotherapy, and was not accepted for focal treatment elsewhere. As far as I was concerned the risks outweighed the benefits. I want to stay healthy, look after my wife, enjoy the family and have a good quality of life in my remaining years. If it was just the RT and I was younger I may have had RT alone as my two younger brothers have. But the stats show that RT, prostatectomy and 'do nothing' have virtually the same life expectancy, but do nothing does not have the risk of poor outcomes from treatment let alone having TURPS as well (which did not go well for my father 25 years ago).

In addition to this they started me on ADT. It was horrendous especially the depression and I had all the other symptoms expected. I am still not sleeping properly and am having cramps and problems with my arms and legs. I pray these abate as time goes by.

I am attempting adjunctive treatment to slow the progress of the PC and I want to see if I am succeeding but there is little support for this either inside or outside of the NHS here in the UK. I have had two MRI's (not sure why) but I will want to see if my lesions are stable or progressing in the future in order to assess the effectiveness of what I am doing.

I would love to hear that your PC has remained stable and encapsulated.

Edited by member 30 Aug 2026 at 20:35  | Reason: Not specified

If you could provide details concerning your Diagnosis and histology it would be helpful.

I can understand your reasoning for not wanting HT because of the side effects but am not sure whether you have asked whether you could just have the RT or want it if offered. Either way, your having an MRI once a year and PSA test 3 or 4 times a year is pretty standard. Should PSA begin to increase in the interim, you will most likely be invited to have the MRI brought forward. You can of course have a PSA done privately, although it is said to be more relevant if done by the same lab as your other PSA's. Likewise, you can pay for an-additional MRI scan. (A multi parametric one is better).

You say that you are having adjunctive treatment but not ADT now. So is this some non medically approved herb or what?

Quick synopsis for Barry & Andy:

BHP for many years. Well controlled by Fenasteride. 

Family history of PC hence regular PSA's up to 3.5 variable but dropped to 1.9 on fenasteride.

MRI 2020 reported as negative but now know it was Prads 2.

Double of PSA Jan 2026 2.x to 4.x. MRI lesion 7mm Prads 5. (position reported differently by different oncologists)

Biopsy Gleason 3+4 

Plan as decided by Oncologist ADT, Turps, RT

Further MRI May

Opted to seek focal treatment at UCLH. Turned down when their radiologist found Bilateral lesions (on the original scans!). UCLH recommended - original treatment or AS.

Due to misdiagnosis in report to UCLH (T3 as opposed to T2) I was scared silly and started complimentary treatment designed to stop metastasis.

As stated I was already unwilling to have both TURPs and RT (my father was in a bad way after TURPS 25 yrs ago) due to the combined risks of poor outcomes. My horrendous experience on ADT put the cap on it. I opted for AS. Oncologist No 1 not happy.

Treatment; see Intellectual medicine (You tube). There is no doubt that I would put myself under Dr Petteruti or one of his associates if I lived in the US and had medical insurance. As it is I take his vitality capsules and follow some of his re-purposed medication routes. I am prepared to push harder in some areas of his protocol.

I used the 16/8 diet to loose weight as soon as I had my diagnosis. I have dropped 2 stone. I believed it necessary. Being on this led to the discovery that many believe in fasting in order to let you body recover and go into autophagy mode where there is more chance that Killer T cells can at least reduce metastasis. I have stayed on the 16/8 diet and have to eat more to maintain my body weight. I walk, I exercise, I swim and play golf.

Though dieting I came across the work of Dr Thomas Seyfried (Biologist). I believe him to be correct in his metabolic theory of cancer. It supports my dieting and I would be prepared to join one of the trials if I lived in the US. As it is I keep my body sugar to the minimum, hopefully along with insulin and inflammation levels.

I'm not sure I should go deeper into what actual medications I am taking on this site. But I am still seeking a complimentary practitioner in the UK to give me the guidance I need prescriptions I cannot obtain and, in any case, I do need more frequent MRI's to know of any changes before I change treatments and blood tests to ensure that I am not harming myself.

I took a break to go swimming during writing this (which turns out to be anything like short!) and find my history to be remarkably similar to Julians!).

Good luck and I hope this is useful. It is my experience and I am not recommending any action other than keeping your eyes wide open.

Ted

I can see you've done an enormous amount of research to find your own path that you're comfortable with.

As you say, if I lived in the US, the fact is you don't.

Some have bad reactions to ADT. Some don't.

From what I saw at the RT sessions my husband went to quite a lot are getting on fine with the occasional sweats.

Husband's PSA was 7.5 is now >0.01

I've researched an enormous amount too. Mostly how to mitigate side effects and keep as healthy as possible. Mark Schulz has some excellent YouTube videos on this.

Like you, husband's father had PC about 30 years ago and the RT left his with a few side effects, mainly to his bowels. Even so he lived an active life until he died at 93.

RT has moved on a great deal since then. It is far more accurate and covers a smaller more targeted area.

And one side effect of ADT I'm sure on most mens minds ... our sex life. I'm not going into details but it's always been wonderful and still is .If this side of ADT worries anyone please message me. There is a lot of information out there. Maintaining a happy life is good for mental health for both of us

Clearly you have done your research but have opted for a non standard treatment path. I think it highly unlikely that you will get more than one MRI a year on the NHS, so you will have to take this into consideration. The cost can vary and increase if contrast is used and if the MRI is multiparametric, also where the scan is done geographically. I shopped around for my PSMA scan (It was hard to get it on the NHS at the time) and found the Paul Strickland Scanner Centre less expensive than the few major hospitals that did it. It is located in the Grounds of Mount Vernon Hospital so maybe worth a call if fairly near you. You may be aware that questions have been raised about many repeat MRI scans if the Gadlinolium contrast is used due to toxicity and I don't know whether a definitive answer has been given on this concern as yet.

Restricting intake of sugar and salt, and reducing excess weight along with increased exercise and sensible diet are all healthy things in any case. As to complementary medicine, this has been raised about four or five times in the 18 or so years I have been a member of this Charity. The general opinion has been that the benefits had not been proven and if there were any, why had they not been adopted by the NHS? It was said that anybody taking complimentary medication should mention it to their doctor as this could affect their standard medication.

Hope your regime works well for you.