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I've declined Radiotherapy

User
Posted 27 Oct 2026 at 17:26

Hi there,

I was told in June that I have Gleason 7 (3+4) prostate cancer which has slightly spread to the seminal vesicles. I started Hormone Therapy, had my initial period of Bicalutamide, I have had my first injection and my oncologist recently started me on Abiraterone. Main side effects being hot flushes and aches in my left elbow and shoulder. My Radiotherapy planning was due today but after discussing with my oncologist yesterday I have declined the Radiotherapy treatment out of fear of secondary cancer. I was recently made aware of a person who was in a similar situation to me; he had the hormone therapy and the radiotherapy but now has just had part of his rectum removed due to rectal cancer. Now imo this cancer could not have existed prior to his Radiotherapy treatment as it would have shown up in the scans. It must have been a result of the radiotherapy on his prostate. So I've decided not to have any radiotherapy out of fear of having secondary cancers. I'm now discussing with my oncologist the best way I can monitor the cancer over the coming years. 

Has anyone else been in this, or similar, situation?

User
Posted 29 Oct 2026 at 10:21

You're right we are all different, however there are lots of things about us that are the same, hence the tried and tested treatments available for prostate cancer.

 

 

User
Posted 27 Oct 2026 at 22:43

Originally Posted by: Online Community Member
From studies I've been made aware of, there's a 40% chance of secondary cancer.

I'm not sure where you did your research. Can you post a link to this 40% chance of secondary cancer? Even recurrence rates of prostate cancer, following radiotherapy, is no where near 40%.

Here's some reliable research:

https://ecancer.org/en/news/8845-possible-link-found-between-radiotherapy-for-prostate-cancer-and-risk-of-secondary-cancers

Secondary cancers related to treatment represent perhaps the most serious of all complications, but studies have led to conflicting results.

So a team of researchers based in Canada and the USA - and led by Dr Robert Nam at the University of Toronto - set out to determine the association between exposure to radiotherapy for the treatment of prostate cancer and subsequent secondary malignancies (second primary cancers).

They analysed the results of 21 studies assessing the risk of secondary malignancies in patients exposed or unexposed to radiotherapy in the course of treatment for prostate cancer.

Although they cannot tell us about cause and effect, meta-analyses involving observational research are useful for pulling evidence together.

Study design and quality were taken into account to minimise bias.

They found an increased risk of cancers of the bladder, colorectum, and rectum, but not cancers of the lung or hematologic (blood) system, after radiotherapy compared with no radiotherapy or surgery.

These results were consistent when the researchers restricted analyses to studies using five or 10 year lag periods between treatment and the development of a secondary cancer.

It is important to note, however, that the differences in absolute risks between cases and controls were low, say the researchers (0.1-3.8% for bladder cancer; 0.3-4.2% for colorectal cancer; and 0.3-1.2% for rectal cancers).

Here's some more:

https://www.appliedradiationoncology.com/news/risk-of-secondary-cancer-from-prostate-cancer-radiation-treatment-rare

In a study of about 145,000 men with prostate cancer, the team found that the rate of developing a later cancer is 0.5% higher for those who received radiation treatment than for those who did not. Among men who received radiation, 3% developed another cancer, while among those who were treated without radiation, 2.5% developed another cancer.

Finally, here's what or site says sbout the risks and side effects of radiotherapy.

https://prostatecanceruk.org/prostate-information-and-support/treatments/external-beam-radiotherapy/side-effects-of-external-beam-radiotherapy

Other cancers

Radiotherapy can damage the cells in the tissues surrounding the prostate. There is a very small chance that this could increase your risk of bladder or bowel cancer. It would take at least 5 to 10 years after having radiotherapy treatment for a second cancer to appear.

Originally Posted by: Online Community Member
I could be wrong but the body is a wonderful thing and its healing abilities are amazing. It has its flaws but it's amazing how much suffering it can overcome. Having vitality and a positive outlook is key in any fight against an illness of the body, which many people overlook. Like I stated before, why 'hit' the cancer with everything when the cancer could be managed with very little?

Sadly over the past three years, I've lost too many friends on here, who've lost their battles with prostate cancer. Apart from their cancer, they were all healthy and full of vitality. They never overlooked the importance of positive thought. They threw everything at the disease, but it was not enough to save them. 

As you say, you may be able to manage your T3b disease, just on hormone treatment. 

However, you won't cure it, and there is a high likelihood that at sometime you'll need radiotherapy. Your uncoventional approach is inherently more risky. 

Originally Posted by: Online Community Member
In simpler terms why 'hit' the cancer with everything when the cancer could be managed with very little?

Because it's Stage 3b. It's left the prostate, invaded your seminal vesicles and might decide to venture further a field. You're not hitting it with everything. In your case, radiotherapy and ADT is simply the best way of dealing with it. There are occasions where T3b is deemed suitable for surgery, but even when it is, it's usually combined with additional radiotherapy and ADT.

I was eventually diagnosed with high grade cancer which had breached the prostate capsule, T3a staging. I was given the options of surgery or radiotherapy and ADT. I had surgery and four years later, touchwood, my PSA is undetectable. I'd have never risked not having surgery or radiotherapy and just tried to starve the cancer with ADT alone. In my opinion that would be have been foolhardy. I wanted to hit it as hard as I could when it was curable and reduce the chance of metastasis.

Don't get me wrong, you have every right to post how you intend deal with your cancer. I'm simply questioning the evidence you're using to promote your uncoventional approach. In my opinion, based on scientific fact, you are rejecting radiotherapy, for the wrong reason, based on an incorrect assumption that it hugely increases the risk of causing secondary cancer. By doing this you may be risking further unnecessary disease progression.

Edited by member 28 Oct 2026 at 10:16  | Reason: Additional text

User
Posted 27 Oct 2026 at 20:42

Originally Posted by: Online Community Member
In simpler terms why 'hit' the cancer with everything when the cancer could be managed with very little?

Basically hormone treatment will control and suppress the cancer, but will not cure it. Like every prostate cancer treatment, hormone therapy can have serious side effects. Most blokes on here seem to struggle far more with HT side effects than they do with the side effects of radiotherapy.

Here's a recent conversation on ADT.

https://community.prostatecanceruk.org/posts/t34049-Why-don-t-doctors-warn-you-about-side-effects-of-adt

Although your Gleason score is relatively low, your cancer is not prostate confined. It has spread to the seminal vesicles, staging T3b. At this stage, it's curable. If I were you, despite the risk of radiation side effects, I'd be looking at having it as a curative treatment with ADT, rather than trying to control it with hormone treatment and risking metastasis.

But the choice, is of course, yours.

Whatever you decide, I wish you luck.👍

Edited by member 27 Oct 2026 at 21:02  | Reason: Additional text

User
Posted 29 Oct 2026 at 02:33
Sufferer In North West.

What treatment you have from the options for which you are suitable is rightly down to you and I would not try to convince you to change your decision.

However, with respect, it is obvious that you have a limited grasp of PCa. For example, you say that because cancer cells cannot be seen on a scan there can't be any in the scanned area, That is incorrect as it does happen and furthermore, various types of scans are better at showing cancer cells depending where they are located and the type of tissue or bonethey are in, As the highly regarded Dr Eugene Kwon of Mayo clinic says when answering a questioin on relapse, the cancer seeds were likely there when first treated but unseen. There are also different types of PCa, some with low emitting PCa and faster developing, Do you know and fully understand your diagnosis? Then it is important to know how near cancer cells are and in what concentrations to critical organs. This is part of what is called 'Staging'. So the man you know who went on to have rectal cancer may have even been initially assessed as Gleason 3+4=7 or 4+3=7 (the latter having the more of the higher deviant cancer)but with a 7 like you but have quite a different diagnosis to you.

Work is being done on ways to predetermine whether an individual's cancer is likely to become a serious problem but this has not yet been perfected. It means some men will be treated to a greater extent than necessary while some reject treatment whether knowingly or unknowingly and find that it has advanced to the point where it cannot be cured. As regards being fit, that is likely to help a man to deal wih the side effects of treatment but not to heal it or stop it's spread. Many athletes bear witness to this, one of the more recent being Chris Hoy.

I am now 90 and although still monitored, further radical treatment will not be offered and I would not want Hormone Treatment to give me a few more months but with various side effects. I did have very strong RT in German in 2008 (more than given in the UK) and 2 sessions of HIFU, in 2015 and 2020 and am now considered to be in remission. I am very grateful I had my treatment because I would otherwise most likely have been dead quite a time ago. But my situation is very different to a young man like yourself. True you may live your normal lifespan without radical treatment but you could be missing your window of opportunity of having radical treatment meaning you could have a premature and painful death.

I wish you well.

Barry
User
Posted 29 Oct 2026 at 06:44

Originally Posted by: Online Community Member
The topic is about whether people have declined radiotherapy as I am doing. I want to know their experiences. It's clear lots of commenters on this thread have had radiotherapy so they are in the wrong Conversation. If you've had radiotherapy, I don't want to hear from you.

Hello again, mate.

There will be very few men with T3b prostate cancer, with a PSA of nearly 50, being treated by ADT alone. So I doubt you'll get a response from anyone on here, who's risked what you intend doing.

You've got high risk, nonmetastic prostate cancer.

The management options for patients with high-risk nonmetastatic prostate cancer should always be discussed in a multidisciplinary team setting. The discussion with the patient in the light of his clinical and pathologic characteristics is paramount in order to offer him the best treatment strategy and to avoid unnecessary harm. Clinicians should be aware that ADT alone is an inappropriate treatment option for patients with high-risk non-metastatic disease. An accurate workup to rule out metastatic spread is mandatory before offering aggressive local control modalities.

https://journals.sagepub.com/doi/10.1177/1756287217697661

Your multidiscipline team have advised the correct treatment, radiotherapy and ADT. You've decided to reject their advice. You're perfectly entitled to do what you want.

Good luck, 👍 

Edited by member 29 Oct 2026 at 07:27  | Reason: Add link

User
Posted 27 Oct 2026 at 18:58

Well that is one person who has developed rectal cancer. Now you have a second data point i.e. me. I had radiotherapy 8 years ago and haven't developed rectal cancer. You should probably lend as much weight to my experience as the other person you heard about. Even better just ignore his experience and my experience and just look at the statistics, which suggest one in 50 may develop a secondary cancer.

Prostate cancer is slow growing you are already on treatment which will slow it's growth further, so it may be that the prostate cancer can be held at bay for decades. Most people do not like being on HT but if you can tolerate that for the rest of your life then RT may not improve your quality of life.

Balancing the certainty of having prostate cancer and it possibly being curable against a 1 in 50 chance of getting rectal cancer. I would have the RT, but that is just what suited me when I was diagnosed in my early 50s. 

 

Dave

User
Posted 27 Oct 2026 at 21:53

I am so sorry to hear you have joined the PC club, but fortunately I for one find this forum very supportive, informative, and enlightening. It has helped me to read both consensus and differing opinions and I hope that is also for you. So I just want to weigh in with what worries me the most: resistance to HT. Although some men on here have been successful with HT for nearly a decade or even more, as you say, others are different and not all have been so fortunate. I think my husband would choose RT all over again and more in the future to control spread and oligomets if at all possible to postpone more HT until absolutely necessary.

User
Posted 28 Oct 2026 at 08:45

Hi Sufferer in the North West,

If it's secondary rectal cancer you're specifically worried about, a rectal spacer (SpacerOAR) might be an option. It's a gel that is injected between the prostate and rectum giving a kinda no mans land between the two so RT can be put right to the edge of the prostate without hitting the rectum. I think it's something like an 80% reduction in RT exposure.

 

I don't think all Trusts offer it, but possibly worth a look?

 

Like you say everyone is different, I feel I've got away relatively lightly with respect to HT, however I'm very pleased my 2 years of Zoladex is up, and looking forward to testosterone returning.

 

All the best

John

User
Posted 28 Oct 2026 at 15:32

The lifetime risk of getting bowel cancer is about 1 in 17.
Your risk is a little lower because you already had about 2/3rds of your life (on average) and didn't get it, but it is more prevalent in the age range you have remaining, so the reduction in risk is smaller than 2/3rds.
Radiotherapy roughly doubles your risk, but that's still relatively small, say 1 in 10 (lots of guessing here). Typically, cancers due to radiotherapy take around 20 years to show up, but there's a spread of course.

This risk is weighed against the risk of not curing your prostate cancer. If you decide to go with just hormone therapy, this is the treatment more normally used for metastatic prostate cancer. For metastatic prostate cancer, roughly 1 in 2 survive 5 years. I would expect you to do better than this as you aren't yet metastatic, but 20 years is probably being over-optimistic. This could mean you die of prostate cancer or long term hormone therapy use before you reach the age where radiotherapy-induced bowel cancer becomes a risk.

For most patients of your age, the weight of risks is very much in favour of treating with curative intent (radiotherapy or prostatectomy in your case). However, you absolutely have the right to make this decision yourself.

There is probably no hurry to make this decision in terms of the next few months, but if you leave it to the point where your PSA starts rising again, the option of a cure might have passed.

User
Posted 28 Oct 2026 at 18:45

Hi I'm not triggered at all. I feel concerned for you. Husband had 20 sessions of RT . It has improved drastically since his father had PC and RT in 1980s. He lived to be 93 by the way, and died of a chest infection and old age. 

Husband is also on Hormone Therapy. He is doing extremely well indeed.  I'd say QOL is 95% as good. We've just back from a very busy holiday touring the MEd. He's walked, he's chopped wood, and he's cooking dinner tonight. And I'd want to hear other opinions and weigh up every aspect. 

Our life is good in EVERY respect. We have looked into how to mitigate his medication and yes it is a faff but there we are. I want him to have the very best chance and life he can as I adore him. I'd be extremely worried if he refused a treatment recommended as giving him the best option of recovery. 

User
Posted 28 Oct 2026 at 20:48

Thanks but I'm asking on this thread whether people have declined or are considering declining the radiotherapy. I'm really uninterested in your holidaying in the Med.

User
Posted 28 Oct 2026 at 21:18
Sufferer in the North West. I just want to say that radiotherapy was the only treatment that actually slowed down my husband's cancer. Nothing else did. Do everything you can do to stop it getting into the bones. Enough said.
User
Posted 29 Oct 2026 at 03:32
PS, I have now read further comments made while I was posting and now regret the time I spent. Less than a handful of men have said they have rejected RT on this forum since I joined in 2008, where it was the only treatment offered in cases with curable intent or to reduce bone pain.
Barry
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User
Posted 27 Oct 2026 at 18:58

Well that is one person who has developed rectal cancer. Now you have a second data point i.e. me. I had radiotherapy 8 years ago and haven't developed rectal cancer. You should probably lend as much weight to my experience as the other person you heard about. Even better just ignore his experience and my experience and just look at the statistics, which suggest one in 50 may develop a secondary cancer.

Prostate cancer is slow growing you are already on treatment which will slow it's growth further, so it may be that the prostate cancer can be held at bay for decades. Most people do not like being on HT but if you can tolerate that for the rest of your life then RT may not improve your quality of life.

Balancing the certainty of having prostate cancer and it possibly being curable against a 1 in 50 chance of getting rectal cancer. I would have the RT, but that is just what suited me when I was diagnosed in my early 50s. 

 

Dave

User
Posted 27 Oct 2026 at 20:29
Thanks for replying. I do appreciate it. From studies I've been made aware of, there's a 40% chance of secondary cancer. The effects of radiotherapy are irreversible. Granted we are all different and we are all going to respond differently to the same treatment. What is important to note in this conversation is unlike other cancers, you state that, prostate cancer is slow growing and can well be held at bay for decades. I would completely agree with this position. So my plan is to keep the prostate cancer at bay with the minimal amount of chemical castration possible to ensure a consistently low PSA reading. I want to know whether I need to be having the hormonal injections every 3 months like everyone else? Let's see what happens if I only have one injection in a period of 12 months? Do I need to be taking the Abiraterone tablets all the time? Who knows what will happen? The cancer in my body may respond well to lifestyle changes and the reduced HT. I personally think that having the radiotherapy means it would be difficult to determine how effective the HT is on its own when dealing with the cancer in my body.

In simpler terms why 'hit' the cancer with everything when the cancer could be managed with very little?

User
Posted 27 Oct 2026 at 20:42

Originally Posted by: Online Community Member
In simpler terms why 'hit' the cancer with everything when the cancer could be managed with very little?

Basically hormone treatment will control and suppress the cancer, but will not cure it. Like every prostate cancer treatment, hormone therapy can have serious side effects. Most blokes on here seem to struggle far more with HT side effects than they do with the side effects of radiotherapy.

Here's a recent conversation on ADT.

https://community.prostatecanceruk.org/posts/t34049-Why-don-t-doctors-warn-you-about-side-effects-of-adt

Although your Gleason score is relatively low, your cancer is not prostate confined. It has spread to the seminal vesicles, staging T3b. At this stage, it's curable. If I were you, despite the risk of radiation side effects, I'd be looking at having it as a curative treatment with ADT, rather than trying to control it with hormone treatment and risking metastasis.

But the choice, is of course, yours.

Whatever you decide, I wish you luck.👍

Edited by member 27 Oct 2026 at 21:02  | Reason: Additional text

User
Posted 27 Oct 2026 at 21:16
Thanks for posting. I'm uninterested in how other men find ADT because it affects us all in different ways. I'm merely pointing out that, as we are all aware, radiotherapy can cause secondary cancers. It is irreversible. Also once I have radiotherapy I cannot determine how the cancer is responding to the HT because the prostate is literally 'fried'. Furthermore, there's no guarantee the cancer would not return after RT and HT. I'm a firm believer in letting nature run its course and the cancer is part of me. Like I stated, I want to know what is the least amount of chemcial castration required to keep the cancer at bay. Who knows? I could be pleasantly surprised at the result because my body will respond differently to others.

Imo, luck won't help me but having vitality and a positive outlook are the two things that I think will see me through.

User
Posted 27 Oct 2026 at 21:17
Your decision is logical, it is the reason prostatectomy has generally been favoured for patients of your age. (Plus the fact the younger you are the better the prospects for recovery from the trauma of surgery).

As Dave and Adrian say, if you can manage long term hormone treatment then your cancer will be very slow growing. But that isn't a barrel of fun either.

The other thing - which you might want to talk to your oncologist about - is the inevitable fact that data on 20 year outcomes (the point at which radiation-induced cancers become significant) is by definition data on radiotherapy technology 20 years ago. There have been some significant advances since then. If your hospital has the latest machines, their much better ability to focus beams on the target tissue means less radiation to nearby tissues and thus lower risk of those other cancers.

Monitoring the cancer, which is what you are proposing, is a typical way of dealing with Gleason 6 cancer and is definitely an option for 7(3+4). Usually called active surveillance. Even if eventually the cancer growth necessitates treatment it will come when you are older, and thus the likelihood of radiation-induced cancers during your remaining lifetime becomes less.

User
Posted 27 Oct 2026 at 21:31
Thanks for letting me know that my decision is logical without the prostatectomy. I could be wrong but the body is a wonderful thing and its healing abilities are amazing. It has its flaws but it's amazing how much suffering it can overcome. Having vitality and a positive outlook is key in any fight against an illness of the body, which many people overlook. Like I stated before, why 'hit' the cancer with everything when the cancer could be managed with very little?

Btw, the guy I know who has rectal cancer had RT on his prostate two years ago so i would imagine that would have been with modern technology.

User
Posted 27 Oct 2026 at 21:53

I am so sorry to hear you have joined the PC club, but fortunately I for one find this forum very supportive, informative, and enlightening. It has helped me to read both consensus and differing opinions and I hope that is also for you. So I just want to weigh in with what worries me the most: resistance to HT. Although some men on here have been successful with HT for nearly a decade or even more, as you say, others are different and not all have been so fortunate. I think my husband would choose RT all over again and more in the future to control spread and oligomets if at all possible to postpone more HT until absolutely necessary.

User
Posted 27 Oct 2026 at 22:00

Hi,

It's good to know your mind if that's your choice.  Presumably surgery is regarded not optimum.  Although they say if the main lesion is removed it slows down further development. They'd have to take your seminals and perhaps a bit more and it would likely have the more common side effects.

There is someone on here who refused hormones in 2014, he was 48 and wanted quality of life.  He's still posting although he recently went on hormones as his psa had increased a lot, scans showed multiple spread and he had pains.   His name is Chris J and the link to his profile which is extensive is;

Link to Chris J

You can last a long time on hormones and my Oncologist mentioned hormone holidays in the mix if it got to that.  It can depend on how long you and the hospital think you'll live.   I think I'll be having Radiotherapy within 12 months although the Oncologist has suggested I could wait a long time and then go on hormones perhaps in my late 80s as my psa has been rising slowly.  So good luck you're obviously reviewing your situation and hormones should give you time.  Keep us informed of your decisions as it's interesting to read someone challenging orthodoxy.  I live in NW England.   All the best Peter

 

Edited by member 28 Oct 2026 at 18:19  | Reason: Not specified

User
Posted 27 Oct 2026 at 22:43

Originally Posted by: Online Community Member
From studies I've been made aware of, there's a 40% chance of secondary cancer.

I'm not sure where you did your research. Can you post a link to this 40% chance of secondary cancer? Even recurrence rates of prostate cancer, following radiotherapy, is no where near 40%.

Here's some reliable research:

https://ecancer.org/en/news/8845-possible-link-found-between-radiotherapy-for-prostate-cancer-and-risk-of-secondary-cancers

Secondary cancers related to treatment represent perhaps the most serious of all complications, but studies have led to conflicting results.

So a team of researchers based in Canada and the USA - and led by Dr Robert Nam at the University of Toronto - set out to determine the association between exposure to radiotherapy for the treatment of prostate cancer and subsequent secondary malignancies (second primary cancers).

They analysed the results of 21 studies assessing the risk of secondary malignancies in patients exposed or unexposed to radiotherapy in the course of treatment for prostate cancer.

Although they cannot tell us about cause and effect, meta-analyses involving observational research are useful for pulling evidence together.

Study design and quality were taken into account to minimise bias.

They found an increased risk of cancers of the bladder, colorectum, and rectum, but not cancers of the lung or hematologic (blood) system, after radiotherapy compared with no radiotherapy or surgery.

These results were consistent when the researchers restricted analyses to studies using five or 10 year lag periods between treatment and the development of a secondary cancer.

It is important to note, however, that the differences in absolute risks between cases and controls were low, say the researchers (0.1-3.8% for bladder cancer; 0.3-4.2% for colorectal cancer; and 0.3-1.2% for rectal cancers).

Here's some more:

https://www.appliedradiationoncology.com/news/risk-of-secondary-cancer-from-prostate-cancer-radiation-treatment-rare

In a study of about 145,000 men with prostate cancer, the team found that the rate of developing a later cancer is 0.5% higher for those who received radiation treatment than for those who did not. Among men who received radiation, 3% developed another cancer, while among those who were treated without radiation, 2.5% developed another cancer.

Finally, here's what or site says sbout the risks and side effects of radiotherapy.

https://prostatecanceruk.org/prostate-information-and-support/treatments/external-beam-radiotherapy/side-effects-of-external-beam-radiotherapy

Other cancers

Radiotherapy can damage the cells in the tissues surrounding the prostate. There is a very small chance that this could increase your risk of bladder or bowel cancer. It would take at least 5 to 10 years after having radiotherapy treatment for a second cancer to appear.

Originally Posted by: Online Community Member
I could be wrong but the body is a wonderful thing and its healing abilities are amazing. It has its flaws but it's amazing how much suffering it can overcome. Having vitality and a positive outlook is key in any fight against an illness of the body, which many people overlook. Like I stated before, why 'hit' the cancer with everything when the cancer could be managed with very little?

Sadly over the past three years, I've lost too many friends on here, who've lost their battles with prostate cancer. Apart from their cancer, they were all healthy and full of vitality. They never overlooked the importance of positive thought. They threw everything at the disease, but it was not enough to save them. 

As you say, you may be able to manage your T3b disease, just on hormone treatment. 

However, you won't cure it, and there is a high likelihood that at sometime you'll need radiotherapy. Your uncoventional approach is inherently more risky. 

Originally Posted by: Online Community Member
In simpler terms why 'hit' the cancer with everything when the cancer could be managed with very little?

Because it's Stage 3b. It's left the prostate, invaded your seminal vesicles and might decide to venture further a field. You're not hitting it with everything. In your case, radiotherapy and ADT is simply the best way of dealing with it. There are occasions where T3b is deemed suitable for surgery, but even when it is, it's usually combined with additional radiotherapy and ADT.

I was eventually diagnosed with high grade cancer which had breached the prostate capsule, T3a staging. I was given the options of surgery or radiotherapy and ADT. I had surgery and four years later, touchwood, my PSA is undetectable. I'd have never risked not having surgery or radiotherapy and just tried to starve the cancer with ADT alone. In my opinion that would be have been foolhardy. I wanted to hit it as hard as I could when it was curable and reduce the chance of metastasis.

Don't get me wrong, you have every right to post how you intend deal with your cancer. I'm simply questioning the evidence you're using to promote your uncoventional approach. In my opinion, based on scientific fact, you are rejecting radiotherapy, for the wrong reason, based on an incorrect assumption that it hugely increases the risk of causing secondary cancer. By doing this you may be risking further unnecessary disease progression.

Edited by member 28 Oct 2026 at 10:16  | Reason: Additional text

User
Posted 27 Oct 2026 at 23:39

Wow Adrian excellent research 

User
Posted 28 Oct 2026 at 00:20

Originally Posted by: Online Community Member
There is someone on here who wasn't offered primary treatment and refused hormones as well in 2014, he was 48 and wanted quality of life.  He's still posting although he recently went on hormones as his psa had increased a lot, scans showed multiple spread and he had pains.

Hi Peter,

According to ChrisJ's bio

The biopsy came back Gleason 4+4's , and I had a higher PSA level yet again . The scan showed an 18 mm cancer T3 against my bladder . So I had a Cystoscopy to check inside the bladder to make sure the cancer hadn't broken through . The cancer hadn't broken through so I was given 2 choices at the end of May -- Radical Prostatectomy with bladder reconstruction , or 3yrs Hormone therapy including High Dose Rate Bracchytherapy including 15 sessions of external beam radiotherapy . We couldn't make our minds up but then the option was taken away by a long MDT meeting where all agreed I should have surgery 

He had a prostatectomy in 2015. So he never tackled T3 disease on hormone treatment alone. As far as I'm aware he got recurrence but had no radiotherapy salvage treatment because tests/scans showed he'd progressed to Stage 4 incurable.

In his case, he was offered and accepted conventional treatment, that unfortunately proved ineffective. I believe since then, he has resisted HT as it affects his quality of life. 

Edited by member 28 Oct 2026 at 07:28  | Reason: Spelling

User
Posted 28 Oct 2026 at 08:45

Hi Sufferer in the North West,

If it's secondary rectal cancer you're specifically worried about, a rectal spacer (SpacerOAR) might be an option. It's a gel that is injected between the prostate and rectum giving a kinda no mans land between the two so RT can be put right to the edge of the prostate without hitting the rectum. I think it's something like an 80% reduction in RT exposure.

 

I don't think all Trusts offer it, but possibly worth a look?

 

Like you say everyone is different, I feel I've got away relatively lightly with respect to HT, however I'm very pleased my 2 years of Zoladex is up, and looking forward to testosterone returning.

 

All the best

John

User
Posted 28 Oct 2026 at 11:26

They didn't offer me the spacer because the onco said it could be more trouble than it's worth and because the latest tomotherapy machines are so accurate anyway.

Did the original poster say what his PSA was on diagnosis? that would probably shape my decision on treatment options.

ATB,

hawkz

Edited by member 28 Oct 2026 at 11:27  | Reason: Not specified

User
Posted 28 Oct 2026 at 15:32

The lifetime risk of getting bowel cancer is about 1 in 17.
Your risk is a little lower because you already had about 2/3rds of your life (on average) and didn't get it, but it is more prevalent in the age range you have remaining, so the reduction in risk is smaller than 2/3rds.
Radiotherapy roughly doubles your risk, but that's still relatively small, say 1 in 10 (lots of guessing here). Typically, cancers due to radiotherapy take around 20 years to show up, but there's a spread of course.

This risk is weighed against the risk of not curing your prostate cancer. If you decide to go with just hormone therapy, this is the treatment more normally used for metastatic prostate cancer. For metastatic prostate cancer, roughly 1 in 2 survive 5 years. I would expect you to do better than this as you aren't yet metastatic, but 20 years is probably being over-optimistic. This could mean you die of prostate cancer or long term hormone therapy use before you reach the age where radiotherapy-induced bowel cancer becomes a risk.

For most patients of your age, the weight of risks is very much in favour of treating with curative intent (radiotherapy or prostatectomy in your case). However, you absolutely have the right to make this decision yourself.

There is probably no hurry to make this decision in terms of the next few months, but if you leave it to the point where your PSA starts rising again, the option of a cure might have passed.

User
Posted 28 Oct 2026 at 17:16

Originally Posted by: Online Community Member

For metastatic prostate cancer, roughly 1 in 2 survive 5 years. 

That must be based on very old data, there can't be enough data based on latest treatments, population etc.

I'm metastatic and after receiving radical treatment, my Onco has now said there is a slight chance of a cure.

I hope he's right, or a very long remission would do very nicely thank you!

User
Posted 28 Oct 2026 at 17:46

Thanks for your post and it clearly highlights how each and every one of us is different and treatments affect each and every one of us differently. This is the main reason why I have decided to follow a path of 'self-discovery', what's right for me and what isn't.

User
Posted 28 Oct 2026 at 17:47

Thanks for your post. I would never have prostate removal.

User
Posted 28 Oct 2026 at 17:53

Thanks for your post. The trouble I've found with my posting is it seems many people get triggered by the content. I can obtain statistics to support my position but it is not my intention to create an argument on these discussion boards. I understand it is a very sensitive topic but my original post is about declining radiotherapy and I ask whether any one else has been in or currently in the same situation. I would be grateful if you could respect my post and only reply with a comment that is relevant to my post. It seems you have obviously received radiotherapy so please do not leave comments on this thread. I want to hear from people who have declined it.

 

Edited by member 28 Oct 2026 at 18:07  | Reason: Not specified

User
Posted 28 Oct 2026 at 18:08

Thank you. Your comment provides an insight to the misinformation that surrounds prostate cancer treatment.

User
Posted 28 Oct 2026 at 18:18

I'm not triggered mate, I honestly don't care what you think or do.

On declining cancer treatment though, ex girlfriends Dad declined treatment he was offered due to QOL concerns, guess what, he died. 

He did have a blast in the few years without any treatment though!

Good luck pal.

User
Posted 28 Oct 2026 at 18:23

Thanks Adrian you're giving this some looking which is useful to read.  I've deleted the words 'wasn't offered primary treatment' as my intention was to show someone who rejected hormones for a long time.  I found it encouraging over the years.  Regards Peter

User
Posted 28 Oct 2026 at 18:45

Hi I'm not triggered at all. I feel concerned for you. Husband had 20 sessions of RT . It has improved drastically since his father had PC and RT in 1980s. He lived to be 93 by the way, and died of a chest infection and old age. 

Husband is also on Hormone Therapy. He is doing extremely well indeed.  I'd say QOL is 95% as good. We've just back from a very busy holiday touring the MEd. He's walked, he's chopped wood, and he's cooking dinner tonight. And I'd want to hear other opinions and weigh up every aspect. 

Our life is good in EVERY respect. We have looked into how to mitigate his medication and yes it is a faff but there we are. I want him to have the very best chance and life he can as I adore him. I'd be extremely worried if he refused a treatment recommended as giving him the best option of recovery. 

User
Posted 28 Oct 2026 at 20:48

Thanks but I'm asking on this thread whether people have declined or are considering declining the radiotherapy. I'm really uninterested in your holidaying in the Med.

User
Posted 28 Oct 2026 at 20:51

People must be triggered because it seems they're all promoting the radiotherapy, and maybe it's because they've had the radiotherapy. Like in the opening post, I'm asking whether people are in the same or similar situation as I am. It seems all the commenters thus far are not.

User
Posted 28 Oct 2026 at 20:54

I apologise it wasn't meant to sound crass. He's G 8 and N1 so I'm not laughing either. It was just to demonstrate HT and RT isn't necessarily the end of a good QOL. 

I apologise

Gi

User
Posted 28 Oct 2026 at 21:18
Sufferer in the North West. I just want to say that radiotherapy was the only treatment that actually slowed down my husband's cancer. Nothing else did. Do everything you can do to stop it getting into the bones. Enough said.
User
Posted 28 Oct 2026 at 21:34

Originally Posted by: Online Community Member

Thanks but I'm asking on this thread whether people have declined or are considering declining the radiotherapy. I'm really uninterested in your holidaying in the Med.

🤣 Admire your belligerence pal. 

 

User
Posted 28 Oct 2026 at 21:36

Don't apologise Antoinette, the geezer isn't bothered. He's mastered his own destiny on this mortal coil. 

He's posted on the wrong section anyway, he should be on advanced or metastatic.

 

Edited by member 28 Oct 2026 at 22:20  | Reason: Not specified

User
Posted 28 Oct 2026 at 21:48

@suffererinnorthwest

What was your PSA on diagnosis?

User
Posted 28 Oct 2026 at 22:34

Thanks for posting. I've read when prostate cancer gets into the bones, some men feel pain whereas others don't. So explain that one.

User
Posted 28 Oct 2026 at 22:37

The topic is about whether people have declined radiotherapy as I am doing. I want to know their experiences. It's clear lots of commenters on this thread have had radiotherapy so they are in the wrong Conversation. If you've had radiotherapy, I don't want to hear from you.

User
Posted 28 Oct 2026 at 22:45

What's your PSA?

You seem to be avoiding this question?

User
Posted 28 Oct 2026 at 23:10

My original PSA reading in June was 48.99. It was 1.33 on 29/09/2026 and 0.77 on 12/10/2026. I have bloods on Friday and will receive a new reading on Monday where hopefully it will be lower or even negligible. I stopped taking Abiraterone for some weeks now and I haven't booked my next Prostap injection for November so, for me, it'll be interesting to see what the reading is, where I will act accordingly.

User
Posted 28 Oct 2026 at 23:25

Yes it will be interesting, as the hormones that have reduced your PSA by starving the cancer are probably still in your system.

Be interesting to see what happens if the cancer regains it's appetite.

Do keep us informed!

User
Posted 29 Oct 2026 at 02:33
Sufferer In North West.

What treatment you have from the options for which you are suitable is rightly down to you and I would not try to convince you to change your decision.

However, with respect, it is obvious that you have a limited grasp of PCa. For example, you say that because cancer cells cannot be seen on a scan there can't be any in the scanned area, That is incorrect as it does happen and furthermore, various types of scans are better at showing cancer cells depending where they are located and the type of tissue or bonethey are in, As the highly regarded Dr Eugene Kwon of Mayo clinic says when answering a questioin on relapse, the cancer seeds were likely there when first treated but unseen. There are also different types of PCa, some with low emitting PCa and faster developing, Do you know and fully understand your diagnosis? Then it is important to know how near cancer cells are and in what concentrations to critical organs. This is part of what is called 'Staging'. So the man you know who went on to have rectal cancer may have even been initially assessed as Gleason 3+4=7 or 4+3=7 (the latter having the more of the higher deviant cancer)but with a 7 like you but have quite a different diagnosis to you.

Work is being done on ways to predetermine whether an individual's cancer is likely to become a serious problem but this has not yet been perfected. It means some men will be treated to a greater extent than necessary while some reject treatment whether knowingly or unknowingly and find that it has advanced to the point where it cannot be cured. As regards being fit, that is likely to help a man to deal wih the side effects of treatment but not to heal it or stop it's spread. Many athletes bear witness to this, one of the more recent being Chris Hoy.

I am now 90 and although still monitored, further radical treatment will not be offered and I would not want Hormone Treatment to give me a few more months but with various side effects. I did have very strong RT in German in 2008 (more than given in the UK) and 2 sessions of HIFU, in 2015 and 2020 and am now considered to be in remission. I am very grateful I had my treatment because I would otherwise most likely have been dead quite a time ago. But my situation is very different to a young man like yourself. True you may live your normal lifespan without radical treatment but you could be missing your window of opportunity of having radical treatment meaning you could have a premature and painful death.

I wish you well.

Barry
User
Posted 29 Oct 2026 at 03:32
PS, I have now read further comments made while I was posting and now regret the time I spent. Less than a handful of men have said they have rejected RT on this forum since I joined in 2008, where it was the only treatment offered in cases with curable intent or to reduce bone pain.
Barry
User
Posted 29 Oct 2026 at 06:44

Originally Posted by: Online Community Member
The topic is about whether people have declined radiotherapy as I am doing. I want to know their experiences. It's clear lots of commenters on this thread have had radiotherapy so they are in the wrong Conversation. If you've had radiotherapy, I don't want to hear from you.

Hello again, mate.

There will be very few men with T3b prostate cancer, with a PSA of nearly 50, being treated by ADT alone. So I doubt you'll get a response from anyone on here, who's risked what you intend doing.

You've got high risk, nonmetastic prostate cancer.

The management options for patients with high-risk nonmetastatic prostate cancer should always be discussed in a multidisciplinary team setting. The discussion with the patient in the light of his clinical and pathologic characteristics is paramount in order to offer him the best treatment strategy and to avoid unnecessary harm. Clinicians should be aware that ADT alone is an inappropriate treatment option for patients with high-risk non-metastatic disease. An accurate workup to rule out metastatic spread is mandatory before offering aggressive local control modalities.

https://journals.sagepub.com/doi/10.1177/1756287217697661

Your multidiscipline team have advised the correct treatment, radiotherapy and ADT. You've decided to reject their advice. You're perfectly entitled to do what you want.

Good luck, 👍 

Edited by member 29 Oct 2026 at 07:27  | Reason: Add link

User
Posted 29 Oct 2026 at 09:25

Dear Barry

You make a valuable point:  In my opinion it is very important that the prostate cancer is caught before it metastasises -  If you have metastatic prostate cancer (as I do) - it is incurable - you have it for the rest of your life.    Personally I find HT terrible - it has drained all my energy/stamina from me and I hope that I can find a solution to this.   As you say- there is a window of opportunity (maybe) when the prostate cancer is still contained and thus the treatment can be regarded as 'curative.

@Sufferer in North West - please read the words of Old Barry

Good Luck

Crispin

User
Posted 29 Oct 2026 at 09:47

Hi again,

I don't think anyone is being triggered here, they just want to help by pointing out the risks you are taking. Some might be anecdotal, I'm no professional! However Adrian's posts with proper research/studies should be something to consider when making your decision

You mention taking the least amount of HT to keep things at bay, one HT injection a year. I'd ask what the benefits of this will be verse risks. The injections take a little while to kick in and can cause a spike in testosterone initially, though you can take Bicalutamide to mitigate this. Your body will then take a little while to recover testosterone  after stopping, so you're possibly testosterone  free for about 6 months. It can also take a while for side effects to subside after testosterone has started to recover.

I'm not sure the amount of time you're feeling yourself again is worth the risk the cancer will start "feeding" of the testosterone again. I think if this was the route I'd be taking I'd be looking at staying on HT constantly whilst it still works.

Anyway a question for the professionals.

 

All the best

John

User
Posted 29 Oct 2026 at 09:48

You sound like you have a medical background? Are you an expert in prostate cancer? Have you ever thought about going on TV and sharing your expertise about prostate cancer? What Medical University did you study at? What certification do you have? I reckon you have none of it. You should only be talking about your own experiences and you should not be speaking on behalf of others.

And the thing you forget the most is that we are ALL individuals and we all respond differently to the same treatment.

User
Posted 29 Oct 2026 at 09:49

Any risks that I face will be discussed between me and my oncologist, not by people on this thread.

User
Posted 29 Oct 2026 at 09:54

Originally Posted by: Online Community Member

I'm not sure the amount of time you're feeling yourself again is worth the risk the cancer will start "feeding" of the testosterone again. I think if this was the route I'd be taking I'd be looking at staying on HT constantly whilst it still works.

How do you know you would need to be on HT constantly? Have you tried it? Imo you are clearly making assumptions about how my body will respond and how my cancer will respond in my body. The cancer in my body will respond differently to your cancer in your body because we are different. 

 

 

User
Posted 29 Oct 2026 at 10:17

Just as a brief aside, I asked a "consultant" at the hospital how long I would have to live if I stopped the treatment. He replied, "2 years". My initial thought was "what a load of bollox". Who is this person? God? I mentioned this to my oncologist who agreed with me that the guy should not have said this. Imo the "consultant" was using fear tactics to coerce me to undertake the treatment. This isn't professional and certainly not the kind of service I would expect to receive from anyone. I am not a number, I am a human being.

User
Posted 29 Oct 2026 at 10:21

You're right we are all different, however there are lots of things about us that are the same, hence the tried and tested treatments available for prostate cancer.

 

 

User
Posted 29 Oct 2026 at 19:01

The regime of treatments may be the same but our bodies that receive such treatments behave and act in different ways to those treatments, which means to me that any cancer will behave in different ways depending upon the body it is inhabiting. Furthermore any treatment plan should be individualised to suit the individual's needs. The NHS just provides a blanket procedure when it comes to treatment and imo they should not be doing this because our bodies will respond differently to the treatment and our cancers will respond differently depenidng upon the body it lives in.

User
Posted 29 Oct 2026 at 21:15
I hope your consultant didn't think of himself as "God", it would be dreadful to have a doctor with such arrogance. But oncologists will have seen hundreds of patients with prostate cancer, and for them to indicate a typical disease course from their experience is reasonable advice to a patient.

If I understand right you are planning to take a break from the hormone therapy. I sympathise if you are struggling with the side effects of the therapy (I did) and from what I read there is likely to be a lag before testosterone and cancer cell growth resume. The risk is that cancer cells will spread further before higher PSA is detected and you go back to therapy. But no doubt you know that, and are making an informed decision.

In the end though, "risk" or "typical disease course" isn't a prediction for what happens to a particular individual, you might do better than that (...or worse).

By the way, in the case of your acquaintance his rectal cancer won't have developed as a new cancer in just two years. Cancers take decades to advance to the stage of malignancy but the fundamental changes in cells won't easily show up on scans. Your friend undoubtedly had the cancerous changes already when he underwent radiotherapy, though its development to an identifiable tumour might have been speeded up by exposure to radiation. In my case a potential for rectal problems was identified and my oncologist referred me for colonoscopy to check: a polyp (cancerous growth not yet malignant) was found and I had it removed before starting radiotherapy.

Anyway, good luck with your plans. I think it will be key to keep on good terms with your doctors despite not following their advice, you will want them to keep going with the monitoring tests.

User
Posted 29 Oct 2026 at 21:35

You've got high risk cancer. If you think doing yoga and lighting a few joss sticks will cure you crack on. 

I find your arrogance that you think the NHS should tailor an approach just for you unbelievable. Who are you?

You are not the first and won't be last that comes on here and disappear.

One that sticks in my mind said tomato soup was his salvation and his PSA doubled.

 

 
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