Sunday, 8 March 2020

Radiotherapy; how was it for me?

Jo Lawrence cartoon
In this blog I look at my experiences of radiotherapy; first what happens and my experience, then side effects and then what I decided to do to support myself through the treatment. I include a rather hurriedly made film to share a bit more aboutr what it was like (see below).
I will do a follow-on one soon about when radiotherapy ends and how I am supporting that. Please remember this is only my experience and experiences do vary very considerably. In the past I have written a number of related blogs like two on how to increase the effectiveness of radiotherapy (i), how Gloucestershire is about average in terms of prostate cancer results (ii), how the nocebo effect can impact on side effects (iii), my decision to go for radiotherapy (iv) and the impact of the hormones I’m taking at the same time (v).

I have also covered deliberations about the pros and cons of radiotherapy in a blog (vi). As an aside it is interesting to see that in January a study was published comparing 'Active Surveillance, Surgery, Brachytherapy, or External Beam Radiation With or Without Androgen Deprivation Therapy for Localized Prostate Cancer’ (vii). My cancer is a T3 and locally advanced so this was not so relevant, but I found it interesting that after five years, differences in side effects between the treatment options had disappeared, with the exception that about half the surgically treated men in both the favorable and unfavorable risk groups still had difficulty achieving erections sufficient for intercourse, and between 10% and 13% of them reported ongoing problems with urinary leakage and incontinence. 
Dr. Hoffman commented: "I don’t want anyone to walk away from this analysis thinking they should not get a prostatectomy. Side effects will differ from person to person.” She added that radiation side effects may still develop even after five years. I guess this study also doesn’t look yet at longterm impact and when, if the cancer comes back, radiotherapy is not an option to repeat, whereas those who had surgery may have that option?


So what happens?

The NHS give out several leaflets and there is also stuff online, so this is just a brief personal overview. I do recommend rereading those leaflets as I often forgot some of the stuff after the first reading! A week or so before I started radiotherapy I came in to the hospital for a CT scan; bladder needs to be full and bowels empty. Advice is given to help with that. The exciting bit is that you get to have a tattoo - three permanent dots are made with a needle and ink to enable set up for treatment - basically so they know they will zap the tumour as accurately as possible. 

Number of sessions: I chose 20 sessions with a double/higher dose of radiation compared to the usual 37 sessions that are administered for prostate cancer. I was told that T3 cancers usually get the 37 and the T2 cancers are getting 20 - not sure how accutrate that info is? Anyhow while the shorter time produces more short term side effects it does mean a lot less visits to Cheltenham. The overall dose of radiation is about the same ie a lifetimes worth! I discussed this in an earlier blog but still haven’t found much research to show any significant differences (vi).

Work: my GP signed me off for the time of the treatment and a week and a bit after. Work were also good about it. I‘ve not had more than a handful of days off in the seven years I’ve worked there so it felt very strange taking the time. I also wasn’t entirely sure that this time was really necessary as I thought I might manage some hours at least at the beginning. I know others have done that. In fact I have answered some work emails and calls but I have been hugely grateful for the time. Indeed I credit it with why I am on the mend so quickly. The time has allowed me to do many of the things that have been proven to support radiotherapy (see towards end of this blog). Everyday to Cheltenham and several stressful hours there (a couple of times the visits were over 5 hours) has been pretty exhausting especially towards the end as teh side effects start impacting more severely; in the oncology ward several of us joked about how good it was to have weekends off from the treatment. 
It has also made a difference that work colleagues have  been very supportive with messages and more; here’s one of them that made me smile:

As we try not to slip in the frost, mate
We think of you lying there prostrate
For a middle-aged bloke
The treatment’s no joke
Come back soon ‘cos we’re all feeling lost, mate.

As an aside being off work has meant I have had more time to rest but also watched a bit more on our computer; we don’t have a TV licence but I do love a good film or drama. I started after my first night of radiotherapy with the 2019 series about Chernobyl. Wow powerful stuff and perhaps not the wisest of choices hearing about teh impacts of radiation!! The incident was far more catastrophic than Soviet officials initially let on - and extraordinary all the cover-ups and trying to hide loss of face (viii). Millions suffering and of course a big link with the rises in cancers….I did pick some more cheery films after that!

Timing: There is some research to show that radiotherapy given to cancer patients could produce fewer side effects if it is given to people at a time when they are naturally more active – so, for example, scheduling it in the afternoon for people who are genetically predisposed to be late risers (ix). I’m a morning person but had wanted to fit hyperbaric oxygen sessions before some of the radiotherapy so I plumped for lunchtime. While traffic was better getting there out of the rush hour, this was a poor time in terms of finding a parking space. In the end I also had different times every day in the first two weeks, ranging from 9.00am to 5.15pm; the last two weeks were more regular. The quickest time there was around 85 mins, the longest was quite a bit over 5 hours.

Arrival: I was fortunate to have family and friends take turns in driving and some days, particularly in the first couple of weeks I drove myself. The car parking was often a real added stress, especially if driving myself; several times I waited over 15 minutes for a space to become available. On one occasion paying at the Lido carpark next door, but even that was full on a couple of days. There are just not enough of the free oncology parking spaces especially Monday and Tuesdays - these spaces are available with a permit that is issued on request for the period of the treatment (available at the FOCUS desk in Oncology). 

Getting to end of enemas
Enema/Drinking: Anyhow I aimed to arrive not less than 50 mins before my appointment; this was to enable doing the micro-enema (Micolette; Sodium Lauryl Sulphoacetate, Sodium Citrate and Glycerol) which you hold for 15 mins if possible (not pleasant but fine). Then drink 600ml of water from one of their water fountains (the one in the Worcester Suite has warm water; the other one was too cold to drink that amount of water so quickly). Interesting it was very noticeable if I was not as hydrated as usual, for example if I hadn’t had water at home in the morning it meant that the 600ml was on one occasion not enough to rehydrate and fill bladder. At times I managed to coordinate the visit so that I could drink the water at Maggies Centre - a much nicer place to sit and read my book and have a herbal tea!

Radiotherapy staff/machines; Oh, my I must mention these folk - they really were excellent - could not be more caring. I know training is for 3 years for a specialist degree and the Senior radiographers often do a Masters, but these staff weren’t just about their professional training they really connected and saw people as people and not just a patient to zap. They work in teams on each Linear accelerator treatment machine. Most folk get allocated a machine, mine was Rowan but due to delays and bookings I was twice moved; once to Cherry and once to the slightly older Oak machine. These are highly precise machines that use electrically generated radiation to target the tumour to millimetre accuracy. The four machines are all named after trees; Beech being the one I didn’t get to see. They also all have ’sky ceilings’; these are lighted panels giving the impression of daylight and trees above. Big thanks to the charity, FOCUS, for raising money to have those installed.

Bladder ultrasound; meed to drink more
Ultrasound: So 30-40 mins after drinking all that water the bladder is feeling very full; as the sessions progress the bladder becomes more inflamed and it becomes more of a challenge to hold the full bladder. It was the second week that I really noticed this and by the last week it was quite uncomfortable indeed to try and hold! 
Jo Lawrence cartoon
The first thing that happens when called in, is to have an ultrasound scan of the bladder to see if it is full enough. This can be in a side room or in the actual radiotherapy room. Apparently most people don’t get the amount right in their bladder everytime; in the first week I had too little then too much, but as weeks went on I got somewhat better at it. However, a delay in the appointment, which often occurs with folk needing extra time or indeed on a couple of occasions when the machine breaks down, means holding the bladder can become an even greater challenge. I got good at letting off a cup full of water and keeping topped up if there was a delay. The ultrasound takes a couple of minutes and if OK then it is CT scan time. If not we are sent off to wait for the bladder to fill more or release some; if it was very full sometimes I was able to release a bit just for comfort before going onto the scan.

Board with updates on radiotherapy machines
CT Scan: Well trousers off, lie on the machine with belly exposed. Then an ultrasound, if you’ve not had one already, then there is quite a bit of cold hands moving you into position to line up with those three tattoos. The team leave you for the scan as it is radioactive; that takes about two minutes for the machine to go around you. You then have to wait some more minutes while they set up the radiotherapy; in the photo below that I made you can see the lead slides that move in and out so that they can shape the radiotherapy beam to maximise hitting the tumour.
'Rowan' radiotherapy machine and sky ceiling
The radio is on and you can look at those sky ceilings. However the time seems to get longer as we went on; this is is possibly because more adjustments are necessary. For example if the rectum is swollen then they need to adjust the machine; mine was swelling to 0.6cm and I am aware that if it reaches 1cm swelling then more action is needed. I think three times I had to be rescanned due to wind; I couldn’t feel it at all as by the last seven sessions or so the rectum gets very inflamed. If there is wind or stools then we are sent off to evacuate (with a Glycerol suppository if wanted!). If this happens it often means refilling the bladder and a wait until it is full again. 
On one occasion I could feel a little bit of wind but I understand they were able to proceed because my bladder was so full…but oh my I’ve had a few pretty rough times on there. Apparently there are accidents regularly while people are lying on the machine; I managed to avoid that, although one occasion was very close. They were there with a urinal bottle which fortunately I didn’t need. Another long wait after the scan was when the software went down and had to reload; it is amazing how long 23 mins can be when you have a full bladder!

Lead slides in radiotherapy machine
Treatment: If the scan is OK then treatment can go-ahead; basically that is about 2 minutes as the machine goes around you again, this time with the radiotherapy beam. The radiation does not stay or build up in the body but rather passes through - it is this that causes damage and breaks DNA. Genes control how cells grow and divide. When radiation damages the genes of cancer cells, they can’t grow and divide any more. Overtime, the cells die. This means radiation can be used to kill cancer cells and shrink tumors. It is not the radiation that builds up it is the damage that is additive. The total dosages given for therapeutic radiation are based upon decades of experience; it is about damaging DNA but not so much as to cause a new cancer. Apparently the prostate cells divide very slowly so dosing with radiation and breaking DNA does not kill the cancers immediately. Time passes and prostate cancer cells try to divide. It is those with broken DNA that hopefully do a suicide thing or the immune system recognizes cancer cells as bad and attacks. Either way when the cells do die of apoptosis or necrosis, or are dismantled by the immune system the PSA is released and you can get a post-radiation bump in PSA.

Scheriproct
Reviews: a radiotherapy nurse reviewed the treatment a couple of times with me and I also met my oncologist to look more specifically at how to support the rectal inflammation. This was a useful time to talk about symptoms and side effects in more detail - although the radiotherapy staff are also excellent so do share any side effects with them as well. I ended up with some ibroprufen tablets and steroid suppositories (Scheriproct) for a couple of weeks and they helped a bit. I can’t say any of this was pleasant!! I did also try and make a herbal suppository using an online recipe (x) but think I didn’t put enough coconut oil in as it didn’t hold together; anyhow out of fatigue, desperation and concerns that it would be the right thing, I instead went for the steroid ones!
Ringing that bell
After treatment: time to go home - always first a trip to the loo once or towards the end  indeed twice before getting into the car! On the last session you get to ring a bell three times and all the radiotherapy staff clap. I certainly felt considerable relief that it was over. From a leaflet and from talking to others I was given info about how some symptoms like bladder inflammation can persist for a couple of weeks and even be worse for a bit, while the rectal inflammation may take six weeks or more and fatigue longer. 
I intend a blog looking at what I’ve been doing after the treatment finished - but here is a short film showing a bit of my experiences...



Side effects

Well I’ve covered some of this in the bit above but here is a summary of the possible side effects  - and my experiences. I should warn again, even though it is so obvious, we are all different and folk I spoke to experienced the radiotherapy differently.

Frequent urination - by the end I was averaging 7 times every night and many times a day and sometimes getting worried I’ll make the loo in time. It is extraiodinary how sudden and urgent it can feel!
Difficult or painful urination - eek! Yes, again this got worse towards the end and at one point I was getting concerned I might not be able to pee. I have read in rare cases that some guys need a catheter fitted.
Abdominal cramping - only a couple of occasions
Painful bowel movements and rectal bleeding - now this one hurts and several daily visits and nearly not getting to the loo in time; I am told 20% of patients experience this and I was relieved to discover this doesn’t appear to increase the chances of permanent damage (a minority of people do experience rectal bleeding that can start a year, two or longer after the end of the radiotherapy treatment).
Fatigue - this is already there due to the hormone treatment but made worse - see a video here from a guy undergoing radiotherapy who shares what helps him about how he reshapes the way he thinks about the fatigue (xi).
Sexual dysfunction, including diminished erectile function or decrease in the volume of semen - this is already dire due to the hormones so the radiotherapy has only worsened the sexual side effects and vitality. 

Fortunately not these (so far):
Diarrhea
Skin reactions (similar to a sunburn) - these are generally less for prostate treatment than other radiotherapy but I did have aloe vera ready in case.
Secondary cancers in the region of the radiation
Blood in the urine
Urinary leakage
Rectal leaking

My radiotherapy protocol 

So this is what I worked out after much research and conversations with others who have been through this, a naturopath, a healer, Penny Brohn doctor and more - although this is all my decision in the end and I didn’t share all the bits with all of them! Some may remember I did a lot of research looking at options to support radiotherapy - the lists were huge so this was what I decided in the end - you can see the original blog  looking at supplements here(xii), the blog re other measures here (i) and the blog on why I ended up not taking melatonin here(iii).

Supplements from my original blog (i)
Biostrath 3 teaspoons per day
Immiflex x1
Probiotic x1 (where poss taken with raw veg)
Vitamin D 5,000IUs
Turmeric x2 tablets plus some in food
Selenium x1
Milk Thistle
Magnesium
Homeopathy  
These are the ones I went for from the previous blog (i):
Belladonna 30c x 2 daily before radiation for a week, during radiation and after.
X-ray 30C 30c x 2 daily before radiation for a week, during radiation and after.
Radium Bromatum 30c, one a day during radiation and after.

Additional supplement: D- Mannose
This wasn’t on my original list but works like cranberries in terms of preventing urinary tract infections. Infections can be more common due to the inflammation so anything to reduce likelihood seems a good ploy. There are even some NICE guidelines that suggest it is good in some situations (xiii) plus some very hopeful research on its use with mice and chemotherapy plus it may also slow tumours (xiv).

Caster Oil pack
There don’t seem to be any conclusive studies on the use of castor oil packs externally (though there are some preliminary ones), but it has a great long history of traditional use in many cultures. Studies have shown that when castor oil is applied topically, it has a host of possible uses including reducing inflammation and pain (xv) plus it can poss have a suppressive effect on tumors (xvi). I used one several times towards the end of my treatment and it seemed to draw some of the heat/inflammation out - but boy is it messy. See how to do a pack here (xvii). 
Hyperbaric oxygen; see my film and blog here

Oxygen stuff 
Again I have covered lots of this elsewhere but this is what I managed over the month of treatment:
Exercise - Well I exercised every day, either walking or rebounding plus my weekly dance class; as time went on it got more difficult to motivate but I have seen from the research how important this is so I really pushed myself on this one. I do think it has helped significantly.
Ozone - I was doing rectal ozone three times a week and in the first week that was fine but very quickly the discomfort from all the enemas and suppositories made this completely impossible. I think I only managed four sessions in total.
Hydrogen - I have hydrogen machine made by a guy - normally they are £2,000 to buy - anyhow I have been trialling it; this involved breathing it in for 30 plus minutes each day and drinking a glass of water that hydrogen has bubbled through (a blog on this another time)
Hyperbaric Oxygen - I had great hopes for this one, even made the time of my radiotherapy late enough so that I could fit this in before; however the fatigue and arrangements re getting to Gloucester for the Hyperbaric then Cheltenham then home made it too much. I only managed three treatments.

Shiatsu and healing 
I had both these a couple of times during the treatment. This was wonderful support and I can strongly recommend! 

Meditation and visualisation
I continued with daily mindfulness. I also attempted to visualise the prostate getting smaller when receiving the radiotherapy beams, however a full bladder doesn't make this easy.
Saunas
I continued with these three or four tiomes a week; they felt great in terms of detoxing.

Jo lawrence cartoon
Nutrition
I upped the flaxseeds (taken ground and taken soaked in water), green tea drinks, cranberry juice, turmeric, garlic and continued with the rainbow diet. A lot of this was also about trying to reduce wind and make it easier going to the loo.

Selenite wand
A family member got me one of these to support me through the treatment; whether or not you have any thoughts about the healing powers of crystals, the gesture is very wonderful. I have read, after a quick internet search, Brenda McDermott (xviii), who says: "Selenite: The perfect crystal for bringing in the much needed healing. Selenites’ purifying white light has a natural ability to cleanse, purify, and create a working flow right through the entire energy system. It miraculously is able to dig right down into the DNA, allowing it to restructure and regenerate cells, thus working on tumor reduction and physical healing".

Meanwhile Cary adds (xix): "Let's face it, the whole point about radiation treatment for cancer is to zap the body with radiation, right?  If you are using crystals that block or neutralise radiation, then the effectiveness of that particular treatment is more likely going to be weakened, and possibly not do too much for you.  It would be much better to use healing stones that promote regeneration of cells and tissue - that act as natural tranquilisers - are anti-inflammatory - and strengthen the immune system."

So that'll do for now; next blog will look at the weeks since treatment ended.


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