My name is David K, I am 45 Years old, married (wife's name Lynn) with a 23 year old daughter. I am a technical analyst for Aberdeen Journals Ltd (Newspaper Publisher) in Scotland.
Pre - Diagnosis
On March 29th, 1996 my whole world changed when I was diagnosed with Testicular Cancer - Seminoma - Stage IIc. For twelve to eighteen months prior to this moment I had been going back and forward to the doctors with backache and groin pain but no symptoms of testicle involvement. Prior to this period I had rarely had a cold. I had never done a TSE seriously--felt my balls, yes, but only for the fun of it!
When I first started going to the doctors with back pain the doc's diagnosis was a trapped nerve and I should improve my posture etc. This continued and I got a numb patch in my groin and under my right rib cage, the doc still thought it was a trapped nerve in by back and that this was causing the numbness. Late in Nov 95 I noticed a swelling in my left scrotum, testicles felt the same but left side hung 3 inches below the right.
Straight to the docs I went, a different one this time, and she examined me and diagnosed varicocele (Dec 95) and sent me to the hospital to see a surgeon (Feb 96). A couple of weeks before I saw the surgeon I noticed my left testicle had shrunk to the size of a pea, as I was now doing TSE every five minutes. The surgeon, when I mentioned the shrinking, said I needed a scan, and at that moment I knew something was wrong but NEVER thought about cancer. March 29th 1996 was the date for the scan and we decided to have a week 's holiday before this to cheer our ourselves up, never dreaming of what was to come, just a nagging thought.
The ultrasound technician stuck my balls up between two towels and ran the scanner over them, he then proceeded to scan my groin, stomach, and chest area, and kept saying "Very interesting, this...", he then pronounced that I had a tumor in my left testicle and that I should clean myself up and get dressed! I was still in shock over his tumor statement, then he said they would write a report for the surgeon and they would be in touch. Thank you--next patient.
I had the morning off for this and phoned my boss to say I would not be back in that day (as I had planned), but would be in Monday as normal. This was Feb 96, and it was Sep 96 before I went back to work part time.
After getting home I went to see my GP who said that if it was serious they would be in touch, but that she would phone the hospital for me.The following day I received a phone call from the surgeon who said he was going to refer me to an oncologist. Two days later I saw the onco-doc who told me I had TC, he sent me for blood tests, chest X-ray, breathing tests, and set up a CT scan for two days later. Having had the scan I was to go to see the onco-doc at the clinic, and he told me I had lymph node involvement and the scan would give them the full picture. He then said since I had nothing to eat, he would phone a surgeon and get me booked in for a orchiectomy. "Sometime next week?", I said and "Could I go back to work?"--"No," he said, "You are going up to ward 44 and it will be done this afternoon ".
Three hours later I was on my way down to the operating theatre, and the following day sent home, but was to come back 4 days later to start chemo.
My treatment schedule was to be 6 cycles of BEP, which was later reduced to 4 cycles, saving two for later use, the onco-doc said. [Editor's note: 6 cycles of BEP is NEVER correct!]
Repeated 4 times over a 12 week period.
Week 1 day 1 Cisplatin,Etoposide,given by IV over a 16 hour period.
Week 1 day 2 Cisplatin,Etoposide,Bleomycin ,given by IV over a 16 hour period.
Week 1 day 3 Cisplatin ,given by IV over a 4 hour period.
Week 2 day 8 Bleomycin Injection into the rump.
Week 3 day 15 Bleomycin Injection into the rump.
The Chemotherapy Experience
Going in blind really frightened me at first, this being the first time as a hospital in-patient in my life, but once booked in the nursing staff makes you feel at ease. No detailed information was forthcoming regarding the treatment, just an overall view--I found the names of the drugs from the IV bottle.
Chemotherapy First Cycle
On day one a vent was placed into my vein (usually on the hand or wrist area, putting it in any higher is dangerous as the Cytoxic drugs if it seeps from the vent into the skin causes sever burning) and extreme care is required. Any swelling during administration of drug should be reported to nursing staff immediately, just another worry.
My first day went OK no problems just the continual visits to the bathroom to pee, which never stops during the entire chemo experience. Dragging your chemo pump around is great fun I have since got my chemo pump driving license!
Day two was much the same as day one, taste buds are starting to go and a metallic taste and smell is very apparent, hospital food was tasteless, but I did eat as much as possible, I did not want to lose any more weight.
Day three and more of the same. Sickness medication was working very well, and I was feeling that if this was the norm then the next 3 cycles would be a breeze -- how wrong I was to be. After my first cycle I was optimistic for the following treatments and my only real symptom was the tiredness that kept me in bed for the week.
The following week (Wed) I had my first bleomycin injection, blood tests were taken to establish white and red blood cell counts, these were low but an injection was given, during the next few days, I continued to get more any more exhausted and every movement was a struggle, my only visits out of bed were to the bathroom. My hair had started to come out in clumps (head and body hair) so I had it cut off, putting me in control.
My mouth had become sore so my GP took a specimen from my throat and THRUSH was diagnosed, medication and mouth washes four times a day were prescribed. The second bleomycin injection on day 15 followed the same pattern as previous week blood test's etc, blood count was low again but injection was given and so I went home. My father was coming for a visit that day and due to arrive after a 450 mile journey around 4.30. That day I had arrived home around 3 and had gone to bed exhausted. A quarter of an hour after my dad arrived he had just had time to say hello when I went into a violent shaking spasm, a quick call to be hospital and I was on my way back.
On arrival in the ward I was promptly sick, well they did give me the toxic waste, so I was only giving a bit back. Blood cultures were taken and a course of antibiotics prescribed, three days of continual IV drips, feeling awful (Sat) I went home for a few days before returning on the following Tuesday for cycle two.
Chemotherapy Second Cycle
Returning to hospital I was feeling better, like when you visit the dentist and the tooth ache has gone. Blood counts were taken these were very low but the onco-doc was keen to continue. The exhaustion and thrush were continuing, sucking ice cubes along with the medication and mouth washes kept the thrush bearable. The cycle was relatively uneventful, a repeat of cycle one.
The only other ailment I developed was a skin rash was unexplained at first but was later attributed to a reaction to the bleomycin injections but as this is an important part of the treatment is was determined not to leave this component out. The skin rash which consisted of severe itching later developed into brown patches where the itching had occurred mostly around shoulders and upper arms.
Chemotherapy Third Cycle
By the third cycle I was still feeling exhausted and had mostly been staying in bed whilst at home, my one salvation was my appetite which never seemed to wane.
During the administration of my third cycle I had started to develop severe headaches and this was put down to the bleomycin component. The following week when I went for my injection I was still getting headaches and so I was sent to for a brain scan. This sure caused a panic attack--a brain scan, what would they find now?! I imagined all sorts drilling holes in my head, lopping bits off, etc.
A night in hospital followed and the results would be available next day. This was one of my most worrying times, much to my relief the result found nothing (No brain!) and I was allowed home. The headaches started to get better over the next few days, and I decided the bleomycin was the cause.
Chemotherapy Fourth Cycle
Since it was decided that I would receive four cycles, not six, this was great news as I don't think I could have taken any more toxic bombardment. This put me in great spirits and the onco-doc said the tumor most likely would have gone and no further treatment would be required.
It was planned that a couple of weeks after my 4th cycle that I would have a CT scan to establish to what extent the lymph node involvement had receded.
My blood counts were still extremely low but the onco-doc pushed on regardless, my GP had said that with such a low blood count as mine a rest is usually given for it to recover, but I was considered too much at risk to stop.
Exhausted continually I was looking forward to no more treatment. The chemo ended, after my last bleomycin jab my dad by coincidence was coming for a visit, and you can guess what happened next! As he arrived I went into the shakes again and back to the hospital, I was in for his entire visit, 4 days of IV antibiotics followed by a blood transfusion of 5 pints of fresh blood to perk me up. This did slightly improve things but exhaustion still persisted.
Two weeks holiday from hospital
The onco-doc was on holiday so a scan was arranged for when he was back. I had the scan, and then off to see the doc for my results, expecting the tumor to have gone. The doc was wrong, and an abnormal residual mass was left in my upper abdomen, size not given at this time. I was prescribed radiotherapy for 4 weeks (20 pulses), was I disappointed with this news as I had been expecting to have a few weeks rest then back to work. Still it was better than having two more chemo cycles... [Editor's note: They should not have done any radiation. it is very unlikely that it was needed, and is no longer done in the USA. Radiation to this area can also increase the risk of heart attacks later on.]
The Radiation Experience: Twenty pulses over a four week period
Because I had such a bad time during the chemo they decided I should stay in hospital for the first week's radiotherapy. (My doc was the same for chemo and radiotherapy) The first day you are put on a simulator which provides a live X-ray, from which the doc marks the top, middle, and bottom of your treatment area. The three spot tattoos (which I have still got) are used to line up the beam used in radiotherapy treatment. My treatment area was 11 inches by 4 inches from the middle of my chest to just below my belly button.
The set up complete, I was off for my first blast of Radiation .This was a cumulative dose of 3600 rads given in 20 fractions (90 rads Front and back). Lying flat on a table, I was positioned with the tattoos lined up, and from above a 40 second blast is given to the area. You are then turned over to give an even roast(!), actually you stay still the machine moves around you, another 35 sec blast and you are free for the day. As I was still feeling exhausted, I did not venture about much and stayed in hospital for the first week.
After the fourth pulse I was getting bored with hospital, after all it only lasted 75 seconds a day. I decided to have the rest of my treatment as an out patient..Since I live 25 miles from the hospital this involved my wife driving me in and out every day except weekends for the following 3 weeks (More of my wife's involvement later). I was only physically sick once, the first day I got home after my first out patient treatment, medication soon sorted this out and made it bearable. Mid August and I had finished all treatment surgery, chemo and radiotherapy, still feeling exhausted but hoping to finally start to regain my strength and well being.
AfterWards - NO HOSPITAL
At least not for a couple of months, its amazing how you miss the daily routine of going to the hospital! I felt safe and secure being looked after by the docs and nursing staff, not that my wife didn't look after me, don't get me wrong, she did wonderfully and still is. But knowing that if anything felt wrong I could just ask and a solution was there took a while to get used too.
I had an onco-doc appointment in mid Sep and this involved blood tests and chest X-ray, all seemed OK so I was scheduled for a CT at the end of Oct 96. A few days after the scan I got the results from my doc--this was bad news, a residual mass still existed approx. 4 cm, the doc estimated. He mentioned at this time an RPLND surgery and indicated that this was a risky operation and not for me but it was done in the USA routinely. [Editor's note: After chemo for seminoma, it is quite likely that the tumors will not have gone away. However, unlike with nonseminoma, there is no chance of teratoma, and the RPLND is almost never done.]
An appointment was made for mid Jan 97 to establish the next stage, this time I saw a different onco-doc (a Prof Cassidy) who scheduled a CT scan for Feb 4th. I found out my residual mass was 5.6cm by 2.1 cm which to me was much bigger than the 4 cm estimate I was given earlier by my other doc. My new doc also mentioned that an operation would be the norm in the USA, and this is when I found the TC e-mail network having already found Chris's TCRC page.
The uncertainty returned along with fears that the tumor was going to grow, the prospect of an operation and more chemo really got to me. The follow up CT scan was scheduled for Feb 4th 97, two days later I could not take the waiting and phoned my doc for the results. He called back and told me the upper nodes had shrunk and the lower ones were still the same, the docs were having a meeting to look at the CT scans later in the day. He later phoned to relay the results which were more encouraging--small areas less than 2cm only remain
A few days later I received a copy of a letter sent to my GP. This stated that my markers were normal (AFP and HCG) and my CT scan showed some resolution of the soft tissue thickening that was present in my chest. The abdominal lymph nodes that were enlarged have remained unchanged since my previous scan in Oct 96.
The doctors elected to continue to watch this mass, as some indication that it was still resolving even at this late stage were present. So an appointment was made for mid March .I was also developing other symptoms literately I was growing breasts, my skin was getting dryer and my hair was still not growing normally,further blood investigations were ordered (Hormone Levels plus magnesium and salt). At this time I also found out my AFP and HCG levels, my AFP was 4 at time of diagnosis and <4 after treatment and also currently. The HCG were also similar <1.0 throughout.
My next appointment on April 4th I was given of the results of previous blood investigations which were quite satisfactory, In particular my hormone levels were normal my AFP & HCG were also normal as were the magnesium and salt levels.
This did not explain my symptoms, including continued fatigue. The doctor explained that as all my levels were normal It must be that I had retained more of the chemo drugs in my system than normal and the symptoms would go with time. So I am still on a close watch regime and my next appointment for 4th June will hopefully include my last CT scan if the mass is still resolving, can't wait... To be continued.
The last year has been a nightmare and at times seemed unreal. It took months to actually sink in that I had TC, but that now it has, I feel I am going to be the WINNER. Without the love,help and support of my wife Lynn and daughter Sarah, I would not have been so able to continue the ongoing battle. Their participation would make a story of its own, it is at times like this that you realize who you friends are.
It Was a year ago today
The ultrasoundist said to me
You've a tumor on your left nut
Go see an Oncologist