Hi there. My name is David. I am a 66 year old British national presently living in Spain. After a PSA test revealing extremely high levels ot this marker in my blood sample and subsequent biopsy, I was recently diagnosed with grade T2C cancer of the prostate, and my urologist and oncologist decided upon an urgent combination of Testosterone inhibitors and a 6 week course of daily radiotherapy treatments (which would have started last week had the MRI scan results arrived when expected). I should perhaps mention that I was not given any choices regarding these treatments, nor was I even told the size or precise extent of the tumour - only that it needed urgent treatment. All I have managed to find out is that the cancerous cells were found on both sides of the prostate and that the tumour is large, but I do not know whether there has been any breach of the prostate capsule into any of the lymphatic glands or elsewhere, although the CT scans and other tests were negative for cancer cells having entered the bones.
But the real reason I am writing is the fact that I was not told how severe the side effects of the hormone treatment were likely to be, so it has come as something as a shock some two weeks after my injection and subsequent course of oral medications to find myself unable to sleep at night due to the hot flushes I have been experiencing, which last all night, leaving me totally exhausted by the morning, and unable to get out of bed until I’ve had a few hours of sleep.
When I spoke to my doctor about this she was unable to recommend any treatment and told me to discuss it with the oncologist. So since this particular side effect is apparently so common, how do patients deal with it - especially when the hormone treatment is likely to continue over a period of years rather than months?
A further concern - a few days after the testosterone blocking injection was administered a spherical lump appeared close to the site of the injection. When I showed it to the oncologist following my CT scan she said it was probably only a build up of sebaceous oils, but that I should have my doctor at the health centre examine it. By the time I got to see my doctor the lump had taken on an entirely different appearance - it was now circular, but totally flat and could be easily moved around under the skin. I am still awaiting an appointment for an ultrasound scan, but I am concerned that this might be another tumour, or connected perhaps to the original tumour. Or is it more likely that this cyst had something to do with the injection in my stomach? I would describe the cyst as being fairly small, but quite hard to the touch and fairly near the surface of the skin, whereas when the lump first appeared it was far deeper under the skin tissue and could not be moved at all. I have been experiencing pain around that area of my abdomen, although not directly where the cyst is located. On the positive side the cyst now appears a little smaller than the lump which proceeded it.
I was also not informed of the risk of osteoporosis in long term testosterone blocking. How much of a risk is there actually?
Something else which caught me by surprise was the extreme weakness which I have been experiencing over the past few weeks. Now, perhaps I should have mentioned that I have a co-morbidity, which is COPD, and have just undergone tests for a lung infection, so no doubt this would have contributed to the exhaustion, but I am pretty much accustomed to that - this seems different. I keep expecting to wake up in the morning with at least a semblance of the energy I had a few weeks ago, but so far there has been no improvement (this was before the onset of the hot flushes). I suppose that there has also been a psychological effect from the results of the biopsy and learning that I actually had high risk cancer, but of course no counselling or similar support structure seems to exist in the Spanish health care system - at least not for non terminal cases.
I would be very grateful for any advice or clarification you could offer. Thank you.
