The following day, I had another visit to Dr Gilby to discuss the findings of the biopsy on the tumour, and also to check the result of the CT scan. It turned that it was indeed cancerous, and also four fifths of the hens egg sized testicle was a tumour. The really good news though, was that the connecting tube that was removed as well showed no sign of cancer cells, this means the cancer can be classified as a Stage 1 seminoma, because everything appears to be confined to the testicle itself. The CT scan results confirmed that the lymph node was slightly enlarged, but not to a great degree, so will only need to be monitored to see if it develops further. I was told that there were two options that were being considered, firstly a single course of Carboplatin as adjuvant therapy (which means post-op), given over one hour, or a course of BEP (Bleomycin, Etoposide & Cisplatin), given over 72 hours if the lymph nodes or lungs were found to be diseased. Apparently, even though the source of the cancer has been removed, it is the current thinking that patients are still given chemo to kill off any chance that there could be some cancerous cells lurking that can’t be detected yet (a sort of belt and braces approach). While the specialists decided on the method they would use, I was advised to store some sperm in case my fertility was affected, so taking matters in hand, this is what I did for the next six weeks.
I was told a few weeks later that they had decided to treat me with the single dose of Carboplatin, and the session was booked for 15th May. Prior to that, I had to attend a session to assess if my kidneys were functioning properly (the body removes the chemotherapy drug through your kidneys, so they have to check that they are working properly). This involved injecting a radioactive isotope into your blood stream, and then taking a series of blood samples to see how the kidneys deal with it. Apparently this was all ok, because I had the chemo session on the 15th.
Unlike a course of BEP, Carboplatin is given in one single dose. I had a chat with the specialist (Dr Church), who told me that Carboplatin rarely affects the patient’s sperm court, so all the work I did was probably for nothing. I was also told that this drug also rarely causes hair loss, and then only a thinning of the hair, not total loss. I was taking to a comfy chair in the chemo suite which had a drip machine next to it, were a nurse hooked me up to a cannula in my arm were the drugs were to be fed in.
The first thing that happened was a saline solution was fed through to remove the blood that had entered the cannula pipe, and then the Carboplatin was fed in slowly over the next hour. It’s a funny to be sat there chatting to my dad, and knowing that my body is being pumped full of something that is capable of doing what it does, and feeling nothing out of the ordinary, apart from a weird alternate hot and cold sensation running up my arm. When the hour was over, with my dad doing endless crosswords with me to take my mind off it, another small amount of saline was pumped through to make sure everything had entered my bloodstream. Then I was allowed to go home with a supply of anti-sickness pills.
Having been assured that it was unlikely that my hair was falling out, my spirits were high because I only had a bout of sickness and severe tiredness to worry about. As it turned out, the only problem I had was total exhaustion for the first week, like feeling worn out raising my eye brows, but this got better over the next two weeks. I would take a couple of tablets when I felt a slight sickness coming on, and within ten minutes, the feeling was gone. I can honestly say that I wasn’t sick once, but I must say that this is only my experience, so it might be different for other people. Once I had recovered from the effects of the chemo, I now had the long three months wait for my first of many check-ups to see if the cancer really had been totally removed from my body. It was during this time that I started to worry about my reaction to the news that I’d had cancer.
I don’t know about you, but I was under the impression that you react the same was to receiving bad news, no matter what the news is. Due to how I’d reacted to certain news in the past, I thought that, as being told that you have cancer is some very big news in a person’s life, I would have reacted quite strongly. As it turned out, my reaction to the whole experience has been quite matter-of-fact up to that point. Because of this, I started to get frightened that at some point in the future I was going to have a major reaction, and mentally dissolve. As many people have said previously, I was of the opinion that counselling was a waste of time and money, but because of how I was feeling, I decided to give it a try, and went with an open mind. It turned out to be the best decision I ever made. What she basically told me was that, as the cancer that I did have was not as bad as I thought it would be, I was actually mentally over prepared, and expecting far worse. Strangely, my feelings were more of relief over what it wasn’t, than worry over what it was. Having sorted my head out, I could now sit back and wait for the first of my check-ups.
Waiting three months for something is actually harder than it sounds (especially with the implications that this has), but eventually my first review came around on 23rd August. The process is actually very easy (if you don’t mind needles), and mostly involves having some blood taken and having a chest x-ray. I will also have to have a couple of CT scans, but only after two and five years are up. The current protocol that I’m on means that I have to be tested every three months of the first year, and then gradually reducing the frequency until it’s only done annually for the last seven years. At the time of writing, I’ve just had my first three-month review, and the results were clear, which means that, for the time being at least, I can say I’m free of the disease. Strangely enough, I now consider myself lucky, because at least the cancer has been found, and was dealt with successfully.
Déjà Vu all over again!
Move forward to 2009, I start getting an aching sensation in my groin and a “dragging” feeling in my remaining testicle. I know from reading other stories on this site that these can be an indication of a possible reoccurrence, although it can also mean a myriad of other things. I decided to get things checked out properly after my previous experience. Ironically, my GP (a new one, because I had since moved house with the benefits of the critical illness pay out I received from the first time around – one of the few benefits that I have found) did say that, if I had been anyone else, without my history of TC, she would have just prescribed a course of antibiotics, and told me to get on with it.
I was booked in for another ultrasound, which found some thread-like abnormalities in the structure of the testicle. Due to this, I was booked in to have a frozen section biopsy on 22nd May to see what was going on. During this procedure, the surgeon (Dr Howell) removed the testicle from the sac without detaching it from your body, and they took a biopsy sample. This is rushed to the lab to be checked, and it cancer is found; they return and complete removing the testicle. If nothing is found immediately, they replace the testicle and sew up the incision. Originally, nothing was found in my biopsy, so everything was return to its place. The sample that is removed is then subjected to more detailed investigations, and this was when my problems started for real.
The investigations revealed that I was suffering from a condition called pre-cancerous germ cell neoplasia, which is basically how cancer starts in the testicle, before it grows into a tumour that can be felt. At this time, I did not officially have cancer, but it was stressed that, if nothing was done about it, I would get it eventually. I asked the urologist if there was a chance that it would not develop, and he said that there was no chance of “if”; it would develop at some time in the future. I was then given the option of either having the second orchidectomy or starting a surveillance protocol to catch it when it did change. Assuming that I waited, the chances are that I would have to have the operation anyway, along with a possibly a course of chemo or radiotherapy. I therefore chose to have the operation, and get it over and done with. I went under the knife again (again with Dr Howell) on 27th August, and the operation went very smoothly. The only problem that I had was that, because of the previous biopsy operation, they had to cut through existing scar tissue, which meant that the incision took a lot longer to heal up than first time around. This testicle was then tested again properly, and no actual cancer was found in the testicle or the attached cord. This being the case, they pronounced me cancer free as of the 11th September 2009.
One of the obvious problems that a second time orchidectomy patient encounters is that the body can no longer produce testosterone, so it has to be provided artificially. This can be done with either a daily application of testosterone gel, a daily patch (like a nicotine patch), or by having a short term or long term acting injection. The injection works by providing a reservoir of testosterone that is injected into a large muscle (buttock or upper thigh), and this is slowly released into the body to be adsorbed naturally. There are pros and cons for each type of deliver, so it very much depends on what suites you, as to what you will require. Also, different men have different levels of testosterone naturally in their bodies, so there can be a lot of trial and error before you reach the level you are used to operating at. I started off on a course of Sustanon 250, which is supposed to last for 4 weeks according to the leaflet, but I started to get symptoms again after only two. I was then given a shot called Nebido, which is supposed to last 10 to 12 weeks, again according to the leaflet provided. After 8 weeks I was showing severe sighs of low testosterone, and my blood test showed that my level had shrunk down well below what is considered to be the absolute minimum you need. I have therefore changed the frequency with which I get my testosterone booster to take this into account. It appears that I operate on a higher testosterone level than is “normal”, but it works for me. If you do not get enough, you become sluggish, tired, and forgetful; a bit like having very bad flu (not man flu, proper flu). If you go the other way and get too large a dose, this can lead to mood swings, anxiety, and other symptoms sometimes called “roid-rage”. At the time of writing, my testosterone levels are being kept nicely under control, and are monitors occasionally by a specialist (called an endocrinologist) to make sure they do not need adjusting. As you age, the body will need less testosterone due to the aging process, so it is natural that the doses you require will diminish.
When I started this log back in 2006, I mentioned that I felt lucky to have found the Stage 1 cancer early enough to be dealt with effectively. This second experience has reinforced that belief, as without regular checks, the early signs that I felt prior to the cancer having a chance to developing could have been missed.
For those reading this, it should be pointed out that I was extremely unlucky to have had to go through this twice (although the second time could not officially be called cancer, as it was caught too early). Once most people have been cured, the cancer does not come back again unless it has had a chance to grow and move to another area (metastasise). My oncologist stated that what I had was described as two totally separate occurrences, and not linked with each other in the slightest. You could say that this makes me VERY unlucky, but I don’t see it that way.
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