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| Me; August 2017! |
Before Christmas I was informed by my surgeon that the NHS would not operate on my prostate. It is my understanding that the two reasons given for this were:
1. that the transuretheral hyperthermia I had in November 2017 could have caused scarring making an operation more difficult and was 'very unlikely to have had any impact on the cancer'. I am told by others who use this hyperthermia that scarring is extremely unlikely.
2. that the position of my tumour (ie where it was 'pressing on the edge of the capsule’) meant it was likely to be less successful and serious long-term side-effects would be more likely. However, this was the case when I was offered an operation in September 2017 so why this reason now?And this was before the second MRI results had come in.
I was told a second opinion would be pointless as they would also agree with this view that an operation was not suitable. It was a strange feeling to be ‘denied’ an operation - even though I had almost, by then, decided against one! I felt slightly cheated. I had researched the surgeon and knew he was experienced and had good results. Anyhow that left me waiting to see the oncologist. I was initially told this would be before Christmas but my appointments were cancelled three times and I didn’t get to see the oncologist until mid-January. The next blog will cover the story from there. In this blog I wanted to share some of my thoughts that led me to saying no to surgery and feeling that was the correct choice for me.
Interestingly my first choice back in September 2017 when I was diagnosed, was for surgery. 'Let’s cut it out and get rid of it’ was my first thought. I welcome my naturopath not saying ‘yes' or ‘no' but saying how important it was to give myself time to decide. Slowly I came to think that radiation or an another treatment might be more suited to me - my intuition at work? I also met a number of people who had had various treatments; in terms of the operation, some have been happy and some have shared that it was not at all an easy journey. Of course, none of this is an ‘easy journey’ whatever path we take!
Strong reactions!
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| Pavement at Penny Brohn |
Radical prostatectomy seems to provoke very strong reactions amongst many folk with cancer. There are those who consider that an operation is the best way to remove the primary tumour and those who actively campaign against it.
The operation I might have had was a keyhole robotic radical prostatectomy to remove the prostate gland and tissues surrounding it. This usually includes the seminal vesicles and some nearby lymph nodes. A surgeon operates a robot and enters in six places; it can take several hours and sometimes they also need to cut into the belly to remove the prostate. It is, after all, in a very difficult position and one nurse told me that it was considered one of the most complicated regular cancer operations. However, doctors consider that a radical prostatectomy can cure prostate cancer in men whose cancer is limited to the prostate. You can see what a radical prostatectomy entails here (i).
One of the challenges regarding this operation is that it was used, and in some areas is still used today, to remove prostates in early cancers where there is not strong evidence that the cancer would cause problems. It is worth noting that the research shows that surgery for men with localized prostate cancer does not reduce the risk of mortality over 20 years; mortality is similar for prostatectomy and observation for early prostate cancer (ii).
The operation I might have had was a keyhole robotic radical prostatectomy to remove the prostate gland and tissues surrounding it. This usually includes the seminal vesicles and some nearby lymph nodes. A surgeon operates a robot and enters in six places; it can take several hours and sometimes they also need to cut into the belly to remove the prostate. It is, after all, in a very difficult position and one nurse told me that it was considered one of the most complicated regular cancer operations. However, doctors consider that a radical prostatectomy can cure prostate cancer in men whose cancer is limited to the prostate. You can see what a radical prostatectomy entails here (i).
One of the challenges regarding this operation is that it was used, and in some areas is still used today, to remove prostates in early cancers where there is not strong evidence that the cancer would cause problems. It is worth noting that the research shows that surgery for men with localized prostate cancer does not reduce the risk of mortality over 20 years; mortality is similar for prostatectomy and observation for early prostate cancer (ii).
Some groups are very strongly against surgery. For example see the Facebook group looking at Non Surgical treatments (iii). They have some good general info around support for prostate cancer and clearly state that they are 'are biased’ about surgery for prostate cancer. Indeed they write that ‘defending or supporting surgery will get you removed from the group’!
Another example of those against surgery is Dr Bert Vorstman, who has written colourfully criticising a lot of the current practice including claiming the FDA approval for robotic devices in the States was ‘bogus’. He writes very strongly on this issue (iv) and some of what he writes is clearly not related to the NHS where experiences are different. However just last month I read an article about the robotic machines and how the FDA have now issued a warning about their use in some operations. As far as I can understand this again doesn’t apply to how the UK do the surgery (v)?
Update 4/06/19: See here for 'Maker of $1.5 Million Surgical Robot Hid More Than 700 Injury Claims'.
Another example of those against surgery is Dr Bert Vorstman, who has written colourfully criticising a lot of the current practice including claiming the FDA approval for robotic devices in the States was ‘bogus’. He writes very strongly on this issue (iv) and some of what he writes is clearly not related to the NHS where experiences are different. However just last month I read an article about the robotic machines and how the FDA have now issued a warning about their use in some operations. As far as I can understand this again doesn’t apply to how the UK do the surgery (v)?
Update 4/06/19: See here for 'Maker of $1.5 Million Surgical Robot Hid More Than 700 Injury Claims'.
Update 17.2.23: less impact from radiotherapy than surgery in terms of urinary and sexual side effects - see here: https://www.icr.ac.uk/news-archive%2Furinary-and-sexual-side-effects-less-likely-after-advanced-radiotherapy-than-surgery-for-advanced-prostate-cancer-patients?utm_medium=email&utm_source=rasa_io&utm_campaign=newsletter
So while I take the strong views about prostatectomy with a pinch of salt I do have concerns and questions:
1. To what extent does the operation lead to more inflammation and regeneration of wounded tissue? Of course we need this in terms of healing but maybe not in terms of cancer as they maybe circulating and waking up dormant cells? Can surgery increase the risk of metastasis? See some useful links re this particularly CancerActive (vi). See also my blog here about biopsies which raise a similar issue (vii). It does seem to my totally unqualified eyes that it must be something of a risk to be removing a cancerous prostate in such a complicated operation, not just in leaving some behind some of the cancer cells but also in spreading the cells? There is some evidence to suggest this may be a problem, but some interesting recent research is considering whether anti-inflammatory drugs prior to surgery might be part of the answer? See for example this 30 min film re lung cancer here (viii).
2. Which is better; radiation or surgery? For my age and cancer, the numbers reaching ten years survival in the NHS for radiotherapy and operation are almost exactly the same. Of course if you have radiation you can’t then have it again, but I have heard some argue the side-effects of the operation are a greater risk than those having radiation? Interestingly I came across a fairly recent bit of research that suggests that there is superior metastasis-free survival for patients with high-risk prostate cancer treated with definitive radiation therapy compared to radical prostatectomy. However they also note overall survival was not different (ix).
3. Side-effects? Of course these are many and reported in the literature including infections after the surgery, depression and more but the four big ones that concerned me were:
Urinary incontinence and leakage: I understand this usually improves in the year after surgery, but many are left wearing pads and a small number face further very difficult procedures and operations. In one report in the US I read you are considered dry if you only use 1-2 pads per day??!
Erection problems/impotence: recovery can take up to two years after surgery and may not be complete. Nerve-sparing prostatectomy lessens the chance of impotence, but doesn't guarantee that it won't happen. In my case I was told it would not be possible to spare the nerves. Some are left unable to ejaculate. I read recently that Southmead Hospital are looking at a new technique that might help (x).
Lymphedema: this is where fluid accumulates in the soft tissues and results in swelling. Sometimes it is found in the operation that it is necessary to remove lymph nodes; there are of course measures that can help in treating the effects of lymphedema.
Death: surgery is one of the only treatments with a small but significant risk of death (xi).
So while I take the strong views about prostatectomy with a pinch of salt I do have concerns and questions:
1. To what extent does the operation lead to more inflammation and regeneration of wounded tissue? Of course we need this in terms of healing but maybe not in terms of cancer as they maybe circulating and waking up dormant cells? Can surgery increase the risk of metastasis? See some useful links re this particularly CancerActive (vi). See also my blog here about biopsies which raise a similar issue (vii). It does seem to my totally unqualified eyes that it must be something of a risk to be removing a cancerous prostate in such a complicated operation, not just in leaving some behind some of the cancer cells but also in spreading the cells? There is some evidence to suggest this may be a problem, but some interesting recent research is considering whether anti-inflammatory drugs prior to surgery might be part of the answer? See for example this 30 min film re lung cancer here (viii).
2. Which is better; radiation or surgery? For my age and cancer, the numbers reaching ten years survival in the NHS for radiotherapy and operation are almost exactly the same. Of course if you have radiation you can’t then have it again, but I have heard some argue the side-effects of the operation are a greater risk than those having radiation? Interestingly I came across a fairly recent bit of research that suggests that there is superior metastasis-free survival for patients with high-risk prostate cancer treated with definitive radiation therapy compared to radical prostatectomy. However they also note overall survival was not different (ix).
3. Side-effects? Of course these are many and reported in the literature including infections after the surgery, depression and more but the four big ones that concerned me were:
Urinary incontinence and leakage: I understand this usually improves in the year after surgery, but many are left wearing pads and a small number face further very difficult procedures and operations. In one report in the US I read you are considered dry if you only use 1-2 pads per day??!
Erection problems/impotence: recovery can take up to two years after surgery and may not be complete. Nerve-sparing prostatectomy lessens the chance of impotence, but doesn't guarantee that it won't happen. In my case I was told it would not be possible to spare the nerves. Some are left unable to ejaculate. I read recently that Southmead Hospital are looking at a new technique that might help (x).
Lymphedema: this is where fluid accumulates in the soft tissues and results in swelling. Sometimes it is found in the operation that it is necessary to remove lymph nodes; there are of course measures that can help in treating the effects of lymphedema.
Death: surgery is one of the only treatments with a small but significant risk of death (xi).
Of course a further aspect is whether more treatment is needed after surgery; sometimes this is hormones and sometimes it could be 'salvage' radiotherapy. I’d love comments/feedback if you don’t agree - or do agree - as noted before we all have to find our own way with treatment. We have to take our own situations and knowledge about our cancers into consideration.
Update 3/06/19: If you are thinking of surgery here is a great site looking at things you can do to help prepare: https://www.canceractive.com/article/how-to%20prepare%20for%20cancer%20surgery%20naturally
Update 3/06/19: If you are thinking of surgery here is a great site looking at things you can do to help prepare: https://www.canceractive.com/article/how-to%20prepare%20for%20cancer%20surgery%20naturally
(iv) https://urologyweb.com/prostate-surgery-medical-malpractice/?fbclid=IwAR2M-AP3OHem0Rv7YsnKbBrxVkubDT0wOS-xLd52oTgt8GZjPdCsqf2rIpE
(v) https://www.statnews.com/2019/02/28/fda-robotic-devices-cancer-surgery/
(v) https://www.statnews.com/2019/02/28/fda-robotic-devices-cancer-surgery/
(vi) CancerActive: https://www.canceractive.com/article/can-surgery-spread-cancer Plus a useful discussion from Life Extension with ideas about how to get the most from surgery: http://www.lifeextension.com/Featured-Articles/Special/Cancer-Surgery-What-You-Need-To-Know-Ahead-Of-Time/Page-01
See also: http://stm.sciencemag.org/content/10/433/eaar1916?utm_campaign=toc_stm_2018-03-21&et_rid=17776589&et_cid=1921305
See also: http://stm.sciencemag.org/content/10/433/eaar1916?utm_campaign=toc_stm_2018-03-21&et_rid=17776589&et_cid=1921305
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