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| Finishing Radiotherapy March 2020 |
Well its been nearly a couple of months since my last blog on this site - a collection of reasons plus busy times - it has also now been 15 months since finishing radiotherapy - and also deciding to finish the hormone treatment - so it seemed a good place to review where I am at. Some might also be interested in my previous blogs on radiotherapy by clicking on the tag.I guess it is worth saying that although the radiotherapy was aimed at getting rid of prostate cancer we don’t know whether that is the case - medical teams talk instead of being ‘in remission’; in other words no sign of cancer. Also no doctor can say for certain whether your cancer will come back. Each cancer is different and the success of your treatment will depend on many things.
Certainly what figures that are available indicate cancer does return in a number of cases; one article suggests up to 40 percent of patients with prostate cancer will show signs of recurrence (i). It is extraordinary that reoccurrence after treatment for early stage prostate cancer is still not properly recorded. This is critical info if we are to understand which men are most at risk of reoccurrence and which treatments are most effective.
However we must remember generally relative survival rates are high. There are many factors that can lead to more likely recurrence like cancer cells in lymph nodes, larger tumours, non-localised cancers, higher grade cancers, diet, men under 60 years and more. Hence, to my mind, an integrative approach where we are still actively working on health is the best call to reduce the likelihood of a return!
Update 22/5/22 - re photo of bell ringing - see this blog re riding the bell - a view that resonates with me: https://blogs.bmj.com/bmj/2019/06/04/jo-taylor-its-time-to-call-time-on-the-end-of-treatment-bell/
Stats
I’ve quoted before the wise words of Sophie Sabbage about avoiding statistics, that she writes in her book, “The Cancer Whisperer”. She says “staying away from soul-sapping, fear-inducing information that discusses indicators, but not inevitabilities.” That doesn’t mean we should settle for half-truths - as she says “Don’t let your oncologist or doctor protect you from the full facts. Push them for answers until you are satisfied you know it all.”
It is also worth noting that fear of reoccurrence can also be hugely damaging. To quote another statistic - approximately 7% of cancer patients develop severe and disabling fear that includes constant intrusive thoughts and misinterpretation of mild and unrelated symptoms (ii).
I have written before about fear and it can have a huge impact on our lives - it certainly has on me in the past. Things are much easier now but there is no question that fear is just under the surface at times. It remains, in my view, one of the number one areas to target in terms of an wholistic approach. To quote Sophie again; “If you don’t take hold of your fear your fear will take hold of you.” She talks about people dying of fear and shock and the need "to pass through it.”
I have been able, in the past, to attend one of her day workshops and just a few weeks ago caught this excellent webinar from Penny Brohn UK talking about how to reduce the impact of fear on medical outcomes and wellbeing. It is an excellent video and I do recommend a watch. See here: https://www.pennybrohn.org.uk/resource/impact-fear-cancer/
PSA results
I’ve had three PSA tests at 3 month intervals, 0.4 then 0.3 then 0.3 a couple of weeks ago. This doesn’t mean a lot at the moment and it could possibly fall more for up to two years after radiotherapy although it looks like it has possibly stabilised? If it rises more than 2.0 then that is when we have to take action. You can see more about PSA tests and bounces after radiotherapy in my blog where I talk about why I stopped hormone treatment here.
Side-effects
Cancer Research UK list long term side effects from radiotherapy and hormone treatment:
Radiotherapy: Problems passing urine, Leakage of urine, Erection problems (impotence), Frequent or loose poo, Inflammation of the back passage (proctitis), Swollen legs or scrotum, Cancer of the bladder or lower bowel, Weaker pelvic bones, Tiny cracks in the bones, Low levels of vitamin B12 (iv).
Radiotherapy side effects can and do occur for many years. Research has shown that men treated for their localized prostate cancer have been found to have similar long-term side effects regardless of treatment type. Both surgery and radiation therapy had similar levels of urinary incontinence, erectile dysfunction, and bowel urgency 15 years after treatment (vi). However the hormone side effects such as hot flushes and sexual problems, are likely to improve after treatment stops - but it can take several months for side effects to improve, although I have read that some men never notice any improvement. This is particularly so if hormone treatment is intermittent.
Urine problems
Well I won’t dwell on this but suffice to say I am still needing the loo three times each night and too often in a day, sometimes with urgency but only very occasionally with a tiny leak. It is enough to keep me at the pelvic floor exercises! There are also some bladder training exercises where you learn ways to wait longer between needing to urinate and passing urine. I’ve not got on well with these, as the moment I am thinking about waiting makes me want to go more.
I have been offered Tamsulosin as it can help urinary symptoms following radiation therapy (vii). However I didn’t feel comfortable taking it as I was managing mostly OK, plus I was concerned about a load of new side-effects and would I then become reliant on it?
Perhaps one of the worst impacts of urine problems like leakage is the accompanying shame. I’ve fortunately not had those moments like some guys who have talked about 'peeing their pants'. Certainly learning how best to manage it successfully can go a long way in easing the pain and embarrassment. I’m hoping that my challenges won’t get any worse!
Sex life
In terms of a love life - certainly the treatments have had an impact - something that perhaps doesn’t get talked about enough? But it isn’t just erections - for many there are other side effects that get even less mentions - climacturia, arousal incontinence plus orgasmic disturbances such as altered orgasmic sensation, anorgasmia, and orgasm-associated pain (dysorgasmia) (viii).
One article I welcomed was by Elvin Box sharing his prostate cancer story and the impact it had on his sex life: https://www.jodivine.com/articles/perspectives/winning-back-our-sex-life-after-prostate-cancer-a-personal-story-by-elvin-box
There are quite a few other resources online - here for example is a video by Dr Holzapfel who looks at some of the effects: https://pcstoronto.ca/2020/12/03/video-there-is-sex-after-prostate-cancer/
Sex is clearly an important part of our lives - for some much more than others - there is also evidence that it can play a part in healing. See a video by Jem Ayres looking at the 'Healing Power of Orgasm’: https://youtu.be/4wp7GYc4yok You can also see also my film of Jems' cancer journey here.
It is also worth noting that there is now research confirming that masturbation boosts your immune system (ix). However I guess if sex is an option then you don’t need such studies to encourage you back to it after treatment?! Then again perhaps too often fear and other stuff gets in the way?
Bones
We know radiotherapy has an impact on bones - and so does the hormone therapy yet it was my Functional Medicine practitioner that advised I get a scan. My GP readily agreed but I wonder why it isn’t standard practice?
A DEXA scan is a bone density scan that uses low dose X-rays to see how dense (or strong) your bones are. They are often used to diagnose or assess your risk of osteoporosis, a health condition that weakens bones and makes them more likely to break. As well as being quick and painless, a bone density scan is more effective than normal X-rays in identifying low bone density (x).
It seems that your T scores are important; they show how your bone mineral density compares with others. Scores of +1.0 are good. Numbers between +1 and - 1 show normal bone mineral density. Scores between -1 and -2.5 indicate Osteopenia (thin bones). Less than -2.5 indicate Osteoporosis (porous bones) , eg. - 2.7, -3.0 etc. And -3.0 shows serious Osteoporosis.
Well I have osteopenia. Spine is minus 1.9 and hips are minus 1.6.
Update 2.10.23: See link between gut and bone health at: https://chriswoollamshealthwatch.com/your-illness/gut-bacteria-bone-density-and-osteoporosis/
So what is recommended?
1. Exercise. Like muscle, bone gets stronger when you use it. The best moves for bones are weight-bearing exercises that force your body to work against gravity. That includes walking, stair climbing, dancing, and lifting weights. I do all those except the weights.
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| Hoping dance will be poss again soon! |
1. Exercise. Like muscle, bone gets stronger when you use it. The best moves for bones are weight-bearing exercises that force your body to work against gravity. That includes walking, stair climbing, dancing, and lifting weights. I do all those except the weights.
2. Diet. High-calcium foods outlined on most websites include:
• Sardines and salmon, with bones
• Tofu
• Dairy products such as yogurt, low-fat milk, and cheese
• Green vegetables such as broccoli and collard greens
Dairy is largely a no-no for me as it’s linked to prostate cancer so I do try and manage to boost other calcium rich foods. My GP recommended looking at one of the calculators online to see if you are getting enough calcium: https://www.osteoporosis.foundation/educational-hub/topic/calcium-calculator
3. Vitamin D. Time outdoors in the sunshine each day helps as do some foods. Here is a list from one website:
• Fish such as salmon, tuna, and mackerel
• Fish liver oils
• Beef liver
• Cheese
• Egg yolks
• Fortified breakfast cereals, juices, milk products, yogurt, and margarine
However some of those foods I am avoiding. A vitamin D test a while ago showed I was at the low end of normal; many nutritionists and functional medicine practitioners like to see levels much higher than that. I have been supplementing around 3,000/4,000iu per day on advice from my practitioner.
4. Don’t smoke, drink less, cut back on salt and reduce caffeine. All great but caffeine intake is sacred at the mo!
In the past I have taken boron (recommended by doctors in Germany) for bone health, at present I have been recommended Algae calcium by my Functional Medicine practitioner - incidentally she recommended it some months before the DEXA test.
The GP is recommending another DEXA scan in 5 years. I am of course hoping the results will show an improvement!
Fatigue
Fatigue doesn’t get a mention by Cancer Research UK as a long term effect of radiotherapy. I wonder why as many other websites note fatigue, although most say it typically fades within three to six months. Talking to a number of people with prostate cancer I wonder how accurate this is. The US Government's National Cancer Institute website notes fatigue caused by radiotherapy can in some patients 'last months or years after treatment ends’ (xi).
Doing a quick google search - not always advised - shows research into prostate cancer patients having radiotherapy and hormones showed 'long- term high level of fatigue and high prevalence of chronic fatigue’ (xii).
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| Cartoon by Russ after reading this blog |
My own experience is that levels of tiredness are greater now than before the hormone and radiotherapy treatment. Not by any means dreadful but certainly not back to normal. Of course it is hard to unpick cause and effect as we’ve also had a very strange last 18 months with Covid. I was also made voluntarily redundant from a job I loved and despite having a new role and opportunities, that clearly does have an impact on health.
Another key factor with fatigue following radiotherapy is Vitamin B12 deficiency (as noted by Cancer Research UK). For the last five months I have taken some supplements particularly chosen for my situation as care is needed regarding B supplementation as there is also a link with increased prostate cancer risk. I also do seem to have a bit of a challenge re methylation - more of that in another blog - but it is a key process underlying epigenetic (see earlier blog here on epigenetics).
Lots of factors will impact on tiredness but this is an area that needs more research - there is still not an understanding of why treatments cause fatigue.
Other side effects
Another factor well researched but not listed above is the loss of muscle mass and strength (xiii). Hormones tamp down the production of testosterone that plays a role in developing and maintaining muscle mass. Resistance exercising is critical here and I can't say enough how important that is to do. I struggled significantly to restore muscles to pre-radiotherapy levels despite a good exercise programme.
I could also note some very minor rectal inflammation and possibly some memory challenges - but hey I am getting older and also know stress is a key factor with memory. I’m not sure I can put that down to the treatments!
Notes:
Shocked to see how many have fractures after hormone treatment: https://medicaldialogues.in/urology/news/dxa-scan-can-prevent-major-fractures-among-prostate-cancer-patients-on-adt-90965
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