The purpose of his note is to show how treatment of prostate cancer with Androgen Deprivation Therapy may result in the loss of muscle mass, strength and cause blood circulation problems and how these may be helped by physiotherapy and exercise.
I have recently started my 20th year since I was diagnosed with prostate cancer in 2000. After my diagnosis I had 3D Conformal Radiotherapy for 37 days. My ongoing treatment since diagnosis has been intermittent Androgen Deprivation Therapy (ADT) using Prostap 3 on and off for 19 years and this has been very effective in managing my prostate cancer. I have had three intermittent periods of ADT totalling 7½ years and I am currently 20 months into my 4th period of ADT. Each time I restart ADT my PSA drops quickly and after 2 or 3 Prostap 3 injections my PSA has dropped to <0.02. My Testosterone always drops immediately to <1 which I understand is the lowest reading produced for my clinical oncology team.
When I stop treatment to have what is known as a “hormone holiday” at some point my PSA eventually starts to go up very, very slowly and I can be off treatment for a number of years – then the process starts again. The three periods when I have been off ADT total 11½ years. I usually stay off treatment until my PSA rises to somewhere around 10. I have a number of side effects linked to ADT and I thought it would be useful to put together this note about some of the side effects which have affected me and how I am dealing with them with help from a Sports Physiotherapist and, separately, doing Circuit Training.
- Purpose of ADT
The starting point here is that when there are prostate cancer cells in your body your testosterone will make them grow faster and this means they will spread. The aim of ADT is to reduce your testosterone, hopefully to castrate level of 0.69, so your prostate tumour(s) will reduce in size and your PSA will drop to a lower level. The lowest PSA readings provided to my Oncology Team is <0.02 and for Testosterone <1 and, as already mentioned, they are my current readings and have been, intermittently, for a long time. Such a reduction shows that your ADT is controlling and reducing the growth of your prostate cancer. The clinical view is that intermittent or continuous ADT will not cure your prostate cancer but it may keep it under control for months or many years, to delay the need for further alternative treatments. Anyone starting ADT or intermittent ADT, needs to understand that the period for which ADT contains your prostate cancer cannot be predicted at the outset.
- Side effects
There is a downside to this because the ADT used to reduce your testosterone can result in something like 20 side effects; you can access a clinical paper from the link in Section 5. Not all of my side effects are relevant to this note. I have a number of continuing side effects but for the purpose of this note I have concentrated on shoulder and neck tension, circulation problems, loss of muscle mass and muscle strength and an increase in fat mass.
The reduction in muscle mass and strength is called sarcopenia which leads to reduced physical function. The cause of sarcopenia is generally due to ageing but I understand Androgen Deprivation Therapy also produces a loss of muscle, strength and function which is progressive.
I have attached a clinical note published by the International Osteoporosis Foundation at Link 1 which explains how sarcopenia causes loss of muscle mass, strength and function.
Link 1: https://www.iofbonehealth.org/what-sarcopenia
In this situation the advice from clinical sources on how to deal with the loss of muscle mass and strength is to exercise with weights. This is all very well but over time the loss of muscle strength can cause other health problems which may also need to be sorted out.
Clearly, not all men will experience the same problems to the same degree and the effect on day to day activities can vary between individuals. The point here is that physiotherapy, especially by a sports physio, can be beneficial for certain side effects to get things back to some kind of normality as explained in Section 4. A sports physiotherapist can:
-loosen tight or rigid muscles;
-stimulate blood circulation which may have been affected by the loss of muscle activity,
-increase muscle strength;
-relieve cramps or muscle spasms;
-loosen joints and improve the range of motion;
-firm up muscles and skin tone;
-if balance has been affected this can be sorted out to put things back to normal;
-the above treatments can be assisted by exercises advised by the physio depending on your problem areas.
After putting up with varying side effects for a long time including dealing with very uncomfortable shoulder and neck tension, loss of muscle mass and strength I contacted Matt Maniakowski, a Sports Physiotherapisty, at the Atlas Physio Sports Injuries & Neuro Centre in York in August 2018.
When I was assessed by Matt before physio treatment started he found that all the muscles in my back, shoulders and neck were rigid and had ‘muscle knots’. The medical term for muscle knots is myofascial trigger points. These knots occur when muscle fibers or the bands of tissue called fascia underneath them tense and tighten. Muscle fibers run in all different directions in our body and muscles are layered on top of each other from our heads to our toes. Our muscles are meant to be pliable, strong, and challenged. However, when we sit at a computer all day in the same position and if we injure ourselves, or if we are chronically dehydrated, we can lose our mobility and flexibility. The various muscle fibers start to stick to each other and become adhered. This new hard and lumpy feeling is a muscle ‘knot’.
I understand that this is also a side effect from ADT treatment.
I have had regular physiotherapy from Matt for my back, shoulders and neck problems and also neck exercises to counteract muscle rigidity causing periods of very uncomfortable neck tension. Improvements came almost instantly for my shoulder and neck problems and were helped by subsequent physiotherapy.
I am really pleased with the help from Matt which sorted out my problems. Matt’s very clear and detailed explanations of what was going wrong due to ADT helped me to understand the effects of ADT and how they can be managed. I still see Matt, although much less frequently, and I have seen him recently about a recurrence of my problems and I am sure these will be sorted out quickly.
I would like to thank Matt for helping me to understand my problems from ADT and for the treatment which followed which was very effective. Following on from this Matt had an input on the clinical content of this note in Sections 3 and 4 which was appreciated.
If you live in East Yorkshire or indeed elsewhere and wish to contact Matt you can google “Atlas Physio”. Alternatively there is more information on www.atlasphysio.co.uk . The Atlas Physio Centre is 10 minutes by car or taxi from York Railway Station.
I have included the clinical information and how to contact Atlas Physio with the agreement of Matt. The Digital Manager in Prostate Cancer UK also agreed that I could include the information about how to contact Atlas Physio in this note for Prostate Cancer UK’s Online Community Forum.
- Preventing and treating side effects from ADT
I limited the detail in this note to how I am dealing with the loss of muscle mass, strength and blood circulation issues and in Section 3 I mentioned that there are 20 side effects which can affect a man having ADT.
I don’t wish to add anything more to this note about the detail of the side effects but I have included a link to where you can find a very good clinical paper which explains the side effects in some detail. For each side effect there is a section called “Prevention/Treatment Strategies”.
The US PROSTATE CANCER RESEARCH INSTITUTE has a clinical paper on their website under the title “Preventing and treating the side effects of Testosterone Deprivation Therapy”. You can see the paper via Link 2
Link 2: https://pcri.org/preventing-and-treating-the-side-effects-of-testosterone-deprivation-therapy-in-men-with-prostate-cancer-a-guide-for-patients-and-physicians
You will see that the note was taken from PCRI’s publication called PCRI Insights November, 2007 vol.10, no.4. Don’t be put off by the publication date. In 2016 this clinical paper was included in the information on PCRI’s website for that years conference. Prior to this years conference I looked at the paper on the website and it had a temporary overlay note above the heading “CLICK HERE TO REGISTER / 2019 PROSTATE CANCER PATIENT CONFERENCE / SEPTEMBER 06-08/LAX MARRIOTT” . This is clearly a clinical paper which has stood the test of time and continues to be publicized by the PCRI as something relevant to their conferences.
- NHS Active Health and exercise
In addition to going to see Matt I have enjoyed circuit training and exercise which started with the NHS scheme called Active Health which operates in a large gym near to where I live. My GP recommended me for this after I mentioned my neck and shoulder problems and the reduction of muscle mass and strength in my legs, as explained in Section 4. After a very comprehensive InBody 720 Body Composition Analysis by NHS Active Health which assessed something like 40 areas of my body I started a 10 week Basic Circuit Training Course in November 2018 which included two gym sessions each week. One session was circuit training which included light weights for some exercises and the other session was in the gym using the treadmill, rowing machine, X Trainer and other resistance machines for the legs, back, chest and arms etc.
In February 2019 I moved on from the Basic Circuit Training Course to the Progression Circuit Training course. This course is two sessions of circuit training each week (but no machines) and again this course includes weights. These sessions are at a greater pace than the Basic Course with more work stations and only one short stop halfway through the session so they are overall more demanding than the Basic Course. I think this is because those on the Progressive Circuit course have a greater understanding of the training and can put more into it.
I must say that the enthusiasm and atmosphere in the training room adds tremendously to the enjoyment of the training. The continuous loud music always with a beat helps. Great! I can see and feel the ongoing benefits from this type of training. I am really enjoying the training and the instructors are very good. Another important point is the bonus of meeting new people each with their own reasons for regular circuit training. I need to qualify this by saying that how much an individual can put into their training depends on their age and physical ability as affected by their particular health problems.
Over the months I thought, as did others, that my results from training continued to be very good. My muscle mass has improved considerably as has my strength even though my Prostap treatment is working, as usual, and my PSA has been <0.02 and my Testosterone < 1. This follows the same pattern over the years in which my PSA and Testosterone levels dropped to the lowest levels during previous intermittent periods of ADT.
There is a downside to all of this because my second InBody assessment in April 2019 was disappointing. Changes to my assessment results were very small but the puzzling change for me was the Skeletal Muscle Mass Analysis (SMM) result which showed a small reduction from 30.7 kg to 30.5 kg since November 2018 rather than an increase. This contradicted the visible changes which have been noticed by me and others and I can see and feel an improvement in my muscle mass despite having a very low level of Testosterone. I have read clinical papers which show that training can increase muscle mass despite a low Testosterone level. Speaking to others who spend a lot of time in the gym, and have done for many years, they are not surprised by the result from this type of assessment. I say no more except there is an alternative method of analysis which produces very accurate assessment results when the individual is submerged in water during the assessment.
I have continued with the Progressive Course and I am very pleased that my muscle mass is still improving even though my treatment is still currently ADT with Prostap 3.
I have set up this note because I don’t think the options to deal with the loss of muscle mass and strength and the subsequent side effects are widely known. Your age or your physical abilities will not necessarily prevent you from joining an Active Health course if you otherwise meet the criteria to join the course. In my area the Active Health courses are free and at the end of the course you can take out a membership of the gym where the course is held at a very reduced cost, depending on your age and circumstances. The starting point is to speak to your GP about a referral to the NHS Active Health Team in your area.
I hope this is helpful to anyone concerned about the loss of muscle mass, strength and related problems from ADT. At the risk of repeating myself taking exercise like this can counteract to some degree the adverse effects of ADT treatment. However, there is another element to this. By joining an exercise group such as the one I am in you meet people of all ages who are trying to improve their health, for whatever reason. Those who I train with are very good company and I see this as a bonus to the training!
Edited by member 15 Oct 2019 at 16:31
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