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Before you take too much of your precious time reading on, this is simply a walk through my cancer journey last year. I hope anyone that is passing through a similar chapter in their lives finds their way here. And that anyone who may ever need to talk about it finds the courage to do so – I (as well as many others on this forum) would be more than happy to help out I’m sure. This forum was an incredible source of support and wisdom for me whenever I needed it so I can only hope to return the favour.
- Felt lump on testicle in May 2016; ultrasound concluded inflammation / infection / cyst
- Lower back pain in May 2017; given painkillers to treat suspected muscular strain, pain persisted
- Diagnosed with Stage 2 Testicular Cancer in July 2017 (spread to the lymph nodes) after ultrasound
- Right Orchidectomy in July 2017 (biopsy revealing pure seminoma); froze samples of sperm a few days before surgery
- Given choice between BEP (bleomycin, etoposide, and cisplatin) and carboplatin (chosen)
- Chemotherapy started in August 2017; three rounds of AUC-10 carboplatin over 9 weeks
- Main symptoms: pre-surgery anxiety, post-surgery haematoma, low white blood cells, platelets, fatigue, loss of appetite
- Returned to work in December 2017 (after being off since July 2017)
- Follow-up CT scans have shown a 50% reduction in tumour size in the lymph nodes
- Blood results continue to show normal levels of LDH (the best detector in my case)
- Age 26 (I didn’t know where else to put this so it didn’t seem like a dating profile)
My story starts in May 2016 when I felt a small lump on my right testicle (and a light fever) so went to the GP. (Side note: please don’t wait, take that leap and just have it checked out – that goes for both guys and girls detecting unusual lumps/symptoms). After he had a look (observing swollen glands around the thigh/groin), and suspected an inflammation / infection, he referred me to have an ultrasound. The results came back suggesting epididymoorchitis / possible cyst, and so I was prescribed antibiotics. Over the next few weeks, I started feeling better and put the lump to the back of my mind as a benign cyst.
Fast forward to May 2017 and I started to experience significant episodes of lower back pain (around the kidney regions). Another visit to the GP and this time suggestions that it was muscle related. I was prescribed painkillers. Again, a few days of taking painkillers and the pain subsided.
However, the pain swiftly returned just days before I was due to fly out on holiday. An emergency visit to another GP and I was handed more painkillers and a stronger gel, just in case the pain resurfaced while abroad. And that it did. And big time. The painkillers became ineffective. I was taken to an emergency hospital while abroad and given stronger painkillers via injection and a strong word to have a full scan and investigation done when I got back home.
Back home and we started with an MRI. The thing about an MRI and modern-day life, is that a high number of us are likely to have imperfect spines. And so, any diagnosis may simply be chronically life-style based. While my other appointments were being scheduled in, I was referred to physio, to work on my core and build greater lower back stability. I did leave sessions feeling great but had to cut them short once the CT / ultrasound appointments were booked in.
The results of the latter were telling. Malignant tumour (5cm) on the right testicle with spread to the lymph nodes in the stomach. In a strange way, it was a relief – that the beast finally had a name after dancing around so many other possibilities. The psychological pain of uncertainty is sometimes greater than any physical pain.
The most important part of any cancer journey is the diagnosis. Early diagnosis is still the best cure.
Before the surgery, I was encouraged to visit a fertility clinic and have samples of sperm frozen, which I did. Cancer messes with the quality of sperm and so the quality of sample was not great – maybe something for later down the line when I decide to try for children.
Nerves about having an anaesthetic aside (in hindsight, I think my pre-surgery anxiety was worse than anything I encountered during chemotherapy!) the surgery itself went smoothly. Operation in the afternoon which required me to stay overnight to rest. The next few weeks at home involved limited movement as the pain around the surgery site gradually went away. My only worry, later casted as typical, was that blood was forming / clotting at the site of the former testicle – a ghost testicle wasn’t being reborn sadly. I also made the decision to not opt for a prosthetic testicle to be put in its place. It was an entirely personal decision – a prosthetic is just aesthetics and so wasn’t worth undergoing another surgery for.
I started treatment roughly a month after the surgery. Although my consultant couldn’t choose for me, he presented me with two options: three cycles of BEP or carboplatin. His tone seemed to suggest that while BEP was the traditional route, carboplatin users suffered less severe symptoms. In fact, the last few years have seen carboplatin become a much more commonly used option.
To decide the cycle dose, I underwent a kidney function EDTA test. Being young and relatively healthy meant that I was lucky – my strong kidneys could handle a higher dose of the carboplatin meaning more effective treatment. The treatment itself with its many short-term symptoms also had a few longer-term impacts – loss of hearing extremely high-pitched sounds (which may actually come in handy) and ever so slightly weakened kidneys – so if they were an A+ before, let’s just say you would go forward with grade A kidneys – not a bad deal.
The symptoms I experienced following each cycle was very much as hinted: low white blood cells (meaning I had to be very careful about going out), low platelets (which meant I had to try not to get cut – which I hope most people do regardless), fatigue, dizziness and food tasting strange (and so loss of appetite / cravings at times). Each cycle was a bit rougher and was made slightly more complicated by the fact that my white cell and red cell nadirs (low points) were a week apart. Following my third and final cycle, my haemoglobin levels fell to a very low level but I opted out of a blood transfusion since I was feeling okay. I will skip past the parts where I tried to be a hero and do cardio with low haemoglobin or go in for two job interviews on consecutive days.
I was extremely lucky. I had the ongoing support of family, hospital staff and work colleagues throughout who were constantly there waiting on hand and foot. In fact, my experience throughout felt like hotel service – ‘Would you like the cake of the day, sir?’.
I tried to stay positive throughout. Darker times in my past also served me well here in terms of emotional resilience when reacting to and facing the news. In fact, the two hardest questions I had to ask myself were: did I do something to cause this *googles manically* and which people should I tell / keep it a secret from?
The actual cancer I always just saw as another challenge among the catalogue of challenges life throws at us. Does that mean that I don’t still worry about reoccurrence? Or never think that what happened last year should still be on people’s minds? Or that it may impact my future? Or never felt or still feel lonely and isolated? Of course not. It is all part of a bigger recovery and growth story.
CT scans (and bloods: HCG / LDH / AFP are the key markers, especially LDH in the case of seminoma) in the time since (which I am scheduled to have every six months, bloods every two months) have been positive. The three tumours in my lymph nodes have shrunk by over 50% and will hopefully continue to do so. It’s a process.
And that brings us back to today. Am I in any physical pain? No – I feel very much as I did ‘five’ years ago. Am I in any psychological pain? Sometimes. If anything, this chapter was simply a reminder that our bodies are temples, our lives invaluable. And so, I continue to try and live in a way that respects that both in terms of nutrition, diet and perhaps most importantly the mental pressures we all sometimes put ourselves through each day.
For anyone that has made it this far, thank you for reading – I hope it was of some use. Please do reach out to me if you have any questions or want to dig into any of the detail – the above account of course misses out key components of any battle (through illness) – financial, psychological, medical, diet, lifestyle etc.
Hi @Winter_Knight,How are you doing? Thanks for sharing you story.As I'm going through some stressful days, I have a couple of questions.
I've been diagnosed with seminoma 2.5cm back in Nov 2017, left i/o was done in Dec. New CT scan in Feb 18 (clear) and adjuvant chemo in Feb as well. Now I'm experience pain in my back, at first it was high up on my left side and around the ribcage, now it's lower, kidney's area, but spread also on the right side. It's not always on the same place, as I find myself "massaging" different areas of my back. Sometimes I feel it very close to the spine. I can sleep at night but I can also feel it if I wake up. This went on for a week now.I've also find out that what was reported as normal back in June (my last appointment) was a level of LDH at 294. Now my mind is doing 1+1 and autonomously decided that I have a relapse. I know it's not necessary the case.How was your back pain? Can you describe it?how high was your LDH (pre op my one was as all the others within limits)? how big were your lymph-nodes? Many thanks for anything you might shareM.
Sorry for not getting back to you sooner. How have you been doing?
I've been doing well - the only issue I've had in the last few weeks is a bout of nausea which has been very on and off but I have not actually had to throw up. I think it may be an acid problem and will get it checked out this week. My white blood count also seems to be at the lower end of the range which I have been reassured by my consultant is not anything to worry about.
My back pain was on both sides around the lower back / kidney region too - never in the upper back. The pain was stabbing and I often had to use ice (bag of cold peas) to cool it down. That said, my back pain fell significantly after my I/O surgery which is strange because the lymph tumours would have still been there at the time.
I suspect, for me at least, part of the lower back pain was in part due to poor back management - physio and yoga have since helped a lot. The modern and rigid lives we live today definitely need to be warded off with good spinal movement to help remain flexible over time.
My pre-surgery LDH was 845. Once treatment had started this fell down closer to the 200s level, and 150s by the end of treatment. It's currently still at 153.
Lymph nodes (left para-aortic) was 2.5cm and went down to 1.7cm (at my last scan in March)
The right side was 2.2cm and went down to 1.2cm. The remaining retro lymph nodes were slightly smaller - the two above were the main ones.
Hope that helps in any way. Look forward to hearing from you.
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