My journey to date (November 2007 to February 2013)
There is a lot to write here, I have been fighting the cancer off and on since 2007 and fighting the side effects of the disease and the side effects of the treatment every day for nearly six years, so I will need to add to this section bit by bit.
November 2007, Rude good health, then a rude shock - Original diagnosis.
In November 2007 I was a seeming very healthy 37 year old, life was good, and then I joined the club that no one wants to join (as it has been so elegantly referred to). My partner noticed a small lump on my right testicle (I wasn’t in the habit of checking myself, I now highly recommend all guys to do it regularly, or even better, get someone you really like to do it for you!). So off I went bare my nut to my GP who assured me that it was probably just a cyst but also that it was very important to get it checked out and referred me on to have an ultrasound. Being young, healthy, busy and stupid I didn’t get around to booking the ultrasound for a couple of weeks. By the time I had it my ball had started to ache slightly. The Ultrasound itself was hilarious, it was performed by a somewhat severe looking east European who instructed me that “YOUMUST BE HOLDINK ZE PENIS ZHUS ZO AZ TO LIFT ZE TEZTIZ!” The stasi has ways of making hold your dick.
Very shortly after the ultra sound my doctor contacted me to advise me it was very likely to be cancer and he referred me to the Peter MacCallum Cancer Centre in Melbourne, Australia.
I was lucky enough to be referred to Prof Guy Toner, in my first meeting with me he gave me the full rundown on what my likely situation was and he booked the required tests, scans.
First Blood Tests
The first blood test revealed highly elevated βHCG and Alpha-fetoprotein. These substances are used as tumour markers, elevated numbers are very likely to mean that a cancerous tumour is active and treatment will be needed (I don’t have the original numbers accessible as I write this so I will have to add them latter).
First CT and Pet Scans
The scans revealed metastasis (cancer spread) to both lungs, predominately the left lung (but again I don’t have the numbers/sizes at hand). There was also metastasis to the mediastinal cavity in my chest.
Orchiectomy
Given the results of the blood tests and ultra sound the left testicle had to go. This also occurred Peter Mac The surgeon who was to perform my orchiectomy name was… Waaaait for it…. Mr Cleave. The images that appeared in my mind with every mention of that name in association with the removal of my ball remain memorable. Of course he proved to be a totally competent surgeon, and a likeable person. The surgery occurred in early December (in the couple of weeks between first noticing the lump and the surgery the tumour had grown alarmingly). The surgery was without complication and I was out of hospital the next day. Unfortunately the patient proved a bit of a boofhead and was too active too early, leading to the wound reopening... no real harm done, but a nastier than needed scar would be the legacy (and possibly a lesson learned on my part... possibly)
Post Orchiectomy Pathology, Full diagnosis now complete
Pathology on the removed nut confirmed that I had a Non-Seminoma Germ Cell Tumour, the cause of this subtype of testicular cancer is still undetermined, but it is believed to be caused by a genetic abnormality or bad cell division at embryo stage, for the unlucky few this problem can develop into full blown cancer later in life, usually between the ages of 15 and 40.
Non Seminoma Germ Cell Cancers usually consist of several subtypes of tumor, in my case choriocarcinoma, teratoma and yolk sac tumour were present. I will not discuss the other subtypes of testicular cancer here as I have not experienced them and I don't have personal information or detail to share
What The Diagnosis Meant
In general terms the survival rates for testicular cancer are amongst the highest for all cancers.
People who have a seminoma that are picked up early often need very little treatment before they can return to their normal life quickly (so if you are in this situation, get it sorted and get it over and done with NOW).
Those with a Non Seminoma often require more intensive treatment, how intensive depends on the tumour subtypes and how advanced the cancer is, but, generally, even in the worst cases there are still treatment options and still a chance that those treatments will work.
With a Non Seminoma consisting predominately of choriocarcinoma, reasonably high tumour markers, and spread to my lungs my situation was not ideal, but it was still far from a disaster, a well established treatment path was laid out based on my particular circumstances, with a good outcome expected by all.
Treatment: First Chemo and Thoracotomy
My treatment plan was to consist of 3 cycles of BEP chemo (consisting of the chemo drugs bleomycine, etopocide and cisplatin) This was to be followed up with a thoracotomy (surgery) to remove any residual, and hopefully now dead, tumour from my lungs and mediastinal cavity.
Tumour markers were initially responsive to treatment, indicating that the chemo was working and the cancer was dying. So far so good, until the middle of the third cycle, and then AFP tumour marker levels jumped again, this indicated that part of my tumour was resistant to the current chemo. My treatment team decided to go ahead with the thoracotomy as planned (after a couple of weeks to recover from the chemo).
A new treatment plan was now needed to deal with the resistant tumour. This was to be 2 cycles of TIP chemo (Paclitaxel, Ifosfamide & Cisplatin), the BEP chemo was also discontinued as I had begun to show signs of reduced lung function, one of the side effects of bleomycine. Thankfully the AFP responded to the new regime, by July 2008 my tumour markers had returned to normal levels and all my scans were clear, my treatment was completed and showed every sign of having been successful, I was placed on a close monitoring regime and, after a bit of effort to recover from the five cycles of chemo, returned to normal life.
So what was chemo like? How did the experience affect my life?
I will add more here shortly.
1st Relapse, 2011
In March 2011, 2 years 8 months after my initial treatment finished my doctors informed me that one of my routine blood test indicated that my βHCG tumor marker was elevated and climbing again. As βHCG is a marker for chorriocarcinoma, which is the most problematic component of testicular cancer, there was no doubt that that the cancer was active again and more treatment would be required.
The recurrence in the tumour was probably due to a tiny, undectable part of the original tumour that had always been, or had become, resistant to the chemo I had had so far and now it had started to grow. The other aspect of concern was that this was considered to be a late relapse, statistics indicate that late relapses can be problematic, and relapses are scary at the best of times.
Other markers remained at normal levels and scans only showed some borderline/questionable enlargement of some lymph nodes in my groin.
Due to the fact that we were again likely to be treating an aspect of the tumour that was resistant to all the chemo I have had previously, a new chemo regime was devised. This time it was to consist of four cycles of VeIP (vinblastine, ifosfamide and cisplatin). The good news is that early in the treatment my βHCG dived to normal levels and stayed there. I found this chemo to be more of a challenge than what I had back in 2008, diet, nausea and weigh tloss were a problem, as were blood count recovery and numerous other complications. Nonetheless normal life beckoned, and I hurried back to it.
2nd Relapse (current), 2013
Find out more about this, and follow my treatment and rantings elsewhere on this blog.
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