Cancer under 40? You’re not alone.
Here’s how our cancer story began and what we’re doing about it
As for so many people, one in two to be precise, cancer unexpectedly thrust itself into our lives and turned everything upside-down.
Our cancer story started with an unusual swelling on my husband’s upper thigh. I was on the landing holding our newborn on my way back to bed when he trust open the bathroom door and, still wet from the shower, requested I inspect a walnut-sized lump. I was well into another bout of painful mastitis and feeling rotten, so I rather unsympathetically suggested that he get it checked-out.
Doctors were somewhat perplexed by the lump and, thinking it could be an inguinal hernia, they sent him to the emergency deparment to have it looked at. He was sent straight there, and I got a call a little while later saying that he was about to have surgery on it. The lump was surgically removed, under only a little bit of local aesthetic, and turned-out not to be an inguinal hernia.
The quick and painful surgery unfortunately led to life-long lymphedema in his right leg. He nursed his wound while we waited for histological test results.
Histological tests on the lump came back as a “reactive lymph node”and we were told that there was no further action needed. Problem was solved.
He was losing weight, having night sweats, and generally not feeling well while his excised “reactive lymph node” sat in a jar somewhere and he’d been sent home with no further investigation.
But, reactive to what?
In one of many GP appointments, “Cancer?” I suggested, but we were told “That’s incredibly unlikely because he’s under 40”.
Up until now the GP didn’t think that there was enough evidence to put him on the Suspected Cancer Referral Pathway, according to the National Institute of Health Care Excellence (NICE) Guidelines. This pathway is key as it requires that the patient is seen by an onologist within 2 weeks of the the GP’s referral.
Over six weeks had gone and it felt like we were shut-out of the care system. A swelling appeared on the left hand side of Rob’s neck — the opposite side of his to the ‘reactive lymph node’ from his thigh—he’d lost his appetite and was still not sleeping. Things were getting worse but were weren’t being listened to, in part because the key symptom he’d started with—the lump in his thigh— was now in a jar and not recorded as being a persistent problem.
One Sunday afternoon, fed-up with not being listened to, I sent Rob out for the afternoon with our baby and toddler. With a few hours free, I sat at my computer and searched the published medical literature.
I found several key bits of information, one of which was that a lump appears on the opposite side of the body, across the midline, indicates that if it was cancer it has likely metastasised. I came across a diagnosis of Cat Scratch disease as a possibility, given many of his symptoms, but it just didn’t fit—he hadn’t had a fever or an open wound for a start.
By the time my husband and kids got home, I was convinced that his symptoms meant that he likely had metastasised cancer, possibly lymphoma, with the largest masses in his abdomen (retroperitoneal).
As Rob thought he was just a bit ill, I kept this knowledge to myself but booked yet another GP appointment. It was incredibly lonely.
This time, nursing our baby, in the appointment I asked for a CT scan and for him to be referred on the Suspected Cancer Referral Pathway. I carefully worded my concerns to the GP, using as many medical terms as I could remember that would signal to the doctor my concern but not overly worry Rob.
After another round of “it’s so unlikely as he’s under 40”, it worked and, although a scan was denied, we were finally on the Suspected Cancer Referral Pathway.
Time moved in slow motion and I tried to stay present and positive for our toddler and baby, but I was distracted and terrified—going through the motions of daily life while imagining the worse and feeling powerless to doing anything about it.
The day finally arrived.
After a quick feel of his tummy and glands the head oncologist announced that he was fine. Cancer free.
I was gobsmacked.
“How can you rule-out cancer?” I asked, totally shocked. Again, the same line was delivered: “That’s incredibly unlikely because he’s under 40. It’s probably a tropical infection”.
But he’d had no signs of infection. The symptoms just didn’t fit.
Nursing our newborn I refused to leave the oncologists office until he had ordered some investigative tests. “But I don’t know what to order?” He (literally) stuttered.
I was prepared. I’d read the medical literature and knew he needed a fine needle aspiration of the swollen node in his neck and a CT scan.
We’d repeatedly been denied a CT scan because it exposes you to radiation, equivalent to what you experience from the environment in a few months, and could lead to cancer. The doctors failed to see my argument that if he already has cancer then a small amount of radiation from a diagnostic test is somewhat negliganle.
The oncologist still refused a CT scan (maybe it was cost?), but agreed to refer Rob to an ENT oncologist.
We waited another agonising few weeks for the ENT oncologist to return from holiday before Rob could be seen.
During these two weeks we received several phone calls from the head oncologist, who was clearly troubled by Rob’s case.
“Cat scratch! It’s cat scratch disease”, he told Rob over the phone. Rob was elated. It’s not cancer after all, its this weird infection. But I knew it wasn’t. I’d read through the literature and it didn’t match. Rob was so happy and relieved, how could I tell him?
After an endoscopy and taking the full medical history, again, the ENT oncologist admitted that he thought Rob might be seriously ill.
I wept with relief. For the first time someone was thinking along the same lines as me.
He booked him in for a fine needle aspiration and told us to wait by the phone for an appointment. Within 24 hours we were back at the hospital and Rob was being prepped for the procedure.
Rob was told the news when the head oncologist waltzed, unannounced, into a phlebotomy appointment three months after symptom onset.
It was the only appointment I hadn’t been there for, thinking that there isn’t much point for me to sit there while he has blood taken.
Oddly enough, he was whisked in for a full body CT scan — suddenly CT scans didn’t seem so dangerous.
In late February 2015 Rob was diagnosed with Germ Cell Tumour, a rare type of testicular cancer that had spread to other parts of the body. The largest masses were in his abdomen, between his kidneys and close to his spine (retroperitoneal), and he urgently needed chemotherapy.
Within a week we moved in with my parents in Kent so Rob could start treatment at The Royal Marsden.
At his first consultation he was told that he was lucky to be diagnosed before it had spread to his brain and that pushing so hard in the system had saved his life.
It broke me that we’d had to fight so hard to have our concerns taken seriously and something done about them.
We were exhausted but uprooted our lives and began a year of gruelling cancer treatment and untameable uncertainty.
Throughout June Rob and I are completing the 100 skips a day in June Challenge to raise funds for Cancer Research UK.
You can support our fundraiser Here
Thanks for reading.
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