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Going down the Radiotherapy Route (a blog)

User
Posted 07 Jul 2014 at 14:14

I found it  useful to read other descriptions of people's experiences (good and bad), so I though I'd share my own.     Originally back on the old-style forums,  but this "Topic" seems a better place to continue.

To recap :   I was 50 when I had my first PSA test (as part of a Company Bupa Wellness checkup), which came back at 5.93.

For genealogical reasons, I'd already had a $99 DNA test, and so I knew that my odds were higher than most (although still only .97% compared with .65% at an age of 50-54), and that ~50% of the risk is due to "lifestyle" (and I thought I was reasonably healthy).

Anyway ...

  • Second PSA was 5.6ng/ml, so had a biopsy on the 18th Feb
  • 26th Feb : meeting at the hospital, and told by a "Nurse Specialist" that yes, I had PC - 6 out of 8 cores showed cancer, with Gleeson of 3+3. (In retrospect, I'm surprised that you aren't given this information on paper at the meeting, so glad I took notes). Encouraged to take the LRP surgery route
  • I started telling friends and family, in particular letting my children (11,17) know. I also briefed my youngest's school just in case. A private note on Facebook was a quick way of briefing the wider family consistently. Also told my boss (who happened to have had PC a few years ago) and HR
  • 18th Mar : following MRI on the 15 Mar, meeting with the Surgeon. MRI shows that cancer localised to prostate (good news), but cancer extensive on left side (so sparing nerves on that side unlikely), again encouraged towards LRP, although external beam (EBRT) discussed in latter part of consultation when I asked about it.
  • I'd performed some more research (see below) and listed up the pros and cons of LRP vs EBRT. I also started practising Pelvic floor exercises ...
  • 1st April : next meeting with surgeon. He read my "pros and cons", and given he confirmed my understanding, I suggested that from my perspective EBRT seemed to have the more manageable side effects, with the same effectiveness as LRP. He was supportive and a meeting with the oncologist will be arranged, but packed off with a prescription of two weeks of Bicalutamide to kick things off (this will pretend to be testosterone, and will cause my cancer cells to grow more slowly and hopefully shrink in size.
  • With a plan in place (3 months of meds, then ~2.5 calendar months of being zapped by radiation), I started telling more people at work. If nothing else, a number of them are my age - so good to raise awareness.
  • No side effects at all from Bicalutamide
  • As soon as I received the CC of the Consultants letter to my GP, I booked a GP visit. The GP asked me to book an appointment at the end of the course of Bicalutamide for the next set of meds
  • On Tue 15th April, she gave me an injection of Prostap 3 DCS (11.25mg Leuprorelin Acetate) into the skin/fatty bit of my stomach (not as painful as it sounds). Asked I book another injection in three months time
  • The Prostap seemed too unsettle my guts (now settling down), some redness (in the form of a thin circle of inflamed skin which took ages to clear up) around the site of the injection. Libido took a while to be impacted, but still (3 months on) workable.   No weight change.       Not sure if its related to the Prostap (or ths summer), but I'm waking an hour earlier than usual, so sleep impacted.
  • I started taking  Sage Leaf capsules (as suggested here) to reduce risk of hot flushes.     After a couple of months, I did started getting them - rather odd, but not horrible.    (Sympathy from womenfolk in the family!)

  • I met  my Oncologist on the 8th May to "plan the radiotherapy stage".    A bit of an anti-climax : more of a meet and greet, confirmation that I understood the risks and information on what would happen next.   Main bit of information - planning would be in Bristol, and Hormone Therapy would continue alongside Radiotherapy.

  • The "phony war" became a little more real on the 3rd July, when I took the train to Bristol for "planning and simulation".    Basically a CT Scan to allow three tatoo'd dots to be added to each hip and above the pubic bone.       (I asked why Bristol ?  they have a CT scanner with a laser add-on)   I bit of a lengthy process - you have to arrive 75 minutes in advance to have a briefing, be given suppositories, and told to go and use one,  wait 15 mins for the effects to kick in ... then after coming back from the loo,  down three cups of water and then let the receptionist know.    Then wait 25+ minutes for the water to fill your bladder to the desired "comfortable" level.    Then a CT Scan (takes minimal time), a couple of tattoo dots.    Top tips : a little "bikini line" tidy up in advance would have helped (suggested for subsequent radiotherapy).     And for Bristol  - no mobile signal, but there is free wifi.    Bring a book.
  • Now ... time to wait again for dates for Radiotherapy to arrive (Raidotherapy should start around two weeks after the simulation).     I've booked my next Prostrap Jab for next week.

 

 

 

 

Some of the websites I looked at (there were quite a few more) : 

http://www.optiongrid.org/resources/psatest_grid.pdf

 

https://www.youtube.com/watch?v=Go3ZfWJCYLA  - "Bang Goes the Theory" clip, that was useful in explaining to my wife how radiotherapy worked

http://www.nice.org.uk/n...ve/13583/64485/64485.pdf (its quite technical, but if you flick through to the more textual parts, useful) 
http://sdm.rightcare.nhs...ate-cancer/introduction/ (its a little general in approach, I'm surprised that age isn't one of the pieces of information that you enter) 
"MyCancerTreatment.nhs.uk" 
http://www.laprp.com/pdf/Post-op_instructions.pdf 
http://prostatecanceruk....ocalised-prostate-cancer 
http://prostatecanceruk....lvic_floor_exercises.pdf 
http://www.healingwell.c...ault.aspx?f=35&m=2652250 

I also googled the hospital, surgeon and the oncologist !

Edited by member 08 Jul 2014 at 09:22  | Reason: Not specified

User
Posted 14 Oct 2014 at 16:39

Time for an update !

*   My daily trips to the local hospital for radiotherapy started in mid-July (a few days after a second hormone jab).     I was lucky that the hospital was less than 4 miles away, and I was able to cycle for most of my treatment       (thankfully a very nice summer).     One tip : opt for early sessions to avoid traffic (especially if you have a long drive) and give you the rest of the day.

*   The radiotherapy was very straightforward, and was run very efficiently (5 patients per machine per hour).     The waiting room even had free wifi,  but most of the ~45 mins for each waiting period was spent chatting.     The most inconvenient aspect was the combination of daily enema and getting the timing right with drinking water etc.

*   Men would simply kick off their shoes and trousers and stride into the treatment room in their boxer shorts

*   Perhaps because I was younger than most (51), but I didn't really suffer from fatigue.    Some of my co-patients in their 70s really had problems, with naps in the afternoon and the weekend.     I was getting up  1-2 a night to pee which disturbed my sleep a little.

* an early tip from a radiotherapist was to opt for a "low fibre diet" (or 1950s diet as my wife joked) -  counter-intuitive from what one would think of as a cancer avoiding diet (avoid kale, and eat white bread) - but designed to be gentle to my poor intestines

*   Indeed, my main side effect was an upset bowel functions (probably as much from the hormone treatment as anything),  with some discomfort at times after going to the loo during the last few weeks onwards.     I mentioned this to one of the radiotherapists, who was able to immediately order up cream to help.

*  right at the end, a little blood after going to the loo (things were getting tender, esp with those wretched enemas), which lasted for a couple of weeks (I spoke to my GP, he felt that it was too be expected)

*  Although we were warned that side effects might peak 1-2 weeks after the end of treatment, I didn't notice anything else and returned to commuting to the office

* a month after the end of treatment, things have pretty much returned  to normal.     Bowel movements still not exactly as normal - but not in any inconvenient way., but I feel in good shape

 

Next steps - meet with a nurse next week, and then the oncologist in December  (both dates scheduled in the last week of radiotherapy)

 

 

User
Posted 07 Apr 2016 at 06:46

Its 18 months since the end of Radiotherapy, so time for an update :

+ 2015 was "PSA tests every 3 months", however with my results coming in around 0.5 (+/- 0.2), this has been switched to a test each six months

+ No hormone therapy or other treatment

+ No side effects (other than perhaps the moment of ejaculation feeling a bit weird - but sex is as good as ever overall)

+ Still cycling to/from work

I took part in a research survey by Southampton University.

I'm also signed up with https://truenth.uhs.nhs.uk/Prostate-Cancer/MyPSA.aspx - which is a handy way to see my PSA results shortly after they take place. (Note : it take a few weeks for the link to my medical data to take place)

I attended a workshop with fellow prostate cancer "survivors". Given I was the youngest (by a decade or more), I'm wondering if (relative) youth has helped reduce the impact of the reported likely problems.

User
Posted 05 Jun 2016 at 11:51

great report.
Recently diagnosed, so looking at options. Urologist just seemed to expect me to sign on the dotted line there and then, until I asked about seeing an oncologist. Hopefully my meeting will be sooner rather than later.

toad.

User
Posted 20 Jun 2016 at 23:26

Did you have EBRT, and at Bristol?

 
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