Today I went with a friend to the Center for Advanced Medicine, RJ Zuckerberg Cancer Center. My friend was being prepared for a highly specialized cancer treatment call SBRT: stereotactic body radiotherapy. SBRT has been around since the 1990s. Using concentrated beams of targeted radiation, this treatment requires fewer sessions than conventional radiation therapy.
SBRT is considered the standard of care, and therefore medically necessary, for certain patients with certain cancers. It is far less invasive than traditional surgery.
I'm writing this blog because my friend's journey with cancer has been an eye opener. There was so much he didn't know when he was first diagnosed. If he had known then, what he knows now, the course of treatment would likely have been less difficult. I'd like to share what he, what we learned so anyone else in a similar situation might be able to help themselves.
One of the biggest surprises for us has been about the five-year rule. Most people have heard that if you survive five years without a recurrence of cancer, then you can let out a sigh of relief. You have a good chance of being cancer free. Julia Rowland, Director of the NCI's Office of Cancer Survivorship, describes the five-year rule this way: This notion of ‘five years’ has taken on mythical proportion,” says Julia Rowland, PhD, director of the NCI’s Office of Cancer Survivorship.
Unfortunately, my friend has the kind of cancer where the five-year rule is irrelevant He has clear cell renal cancer. In January of 2016 he underwent a nephrectomy (removal of the kidney) because a small, malignant tumor had been detected in a routine scan. He depended on his doctors to guide him with post-surgical surveillance. That was a mistake.
My friend learned, far too late, that "late metastasis in renal cell carcinoma is a quite familiar phenomenon". Metastasis in renal cancer has been seen 10, even 20 years after the initial tumor was detected. I found the following statement in an article published by the National Institutes of Health (USA): "Late recurrence of RCC after initial treatment is not a rare event, and lifelong follow-up is necessary."
This is information my friend's doctors had, or should have had. And yet, they did not share this with him. And they did not offer the kind of surveillance that would have spared him serious effects of his illness.
His last scan for cancer, his last cancer check up, was in 2020. He assumed, we assumed, he was cancer free, because we believed in the five-year rule. Two years later, August of 2022, my friend had pain and swelling in his right leg. He consulted his GP, the same doctor who had been his GP at the time of his nephrectomy. The doctor was certainly aware of his renal cancer history.
Did the doctor check for cancer? No. The doctor looked for a blood clot. The doctor never ordered an image, not an x-ray, MRI or sonogram. Any one of these procedures would have revealed that my friend had a metastatic tumor on his tibia.
Of course, there was no blood clot. No further investigation of the swelling and pain was offered.
In January of 2023, my friend returned to the doctor. The symptoms in his leg were not better. Actually the leg was worse. Again a blood clot was suspected. Spinal degeneration was suspected. The thought of cancer, in this renal cancer patient, was not in the doctor's head.
No scan of the leg, no x-ray, sonogram, CT scan was performed.
By December of 2023 my friend could barely walk. In January he went once more to the doctor. The leg looked dreadful. Apparently the doctor agreed. An x-ray was ordered and a large 'lytic' (destructive) tumor on the tibia was discovered.
At this point the only course of action possible was surgical removal. This was a quite extensive operation that required follow up with radiation treatment, and a second operation this year.
Had the tumor been discovered in 2022, it is likely removal with SBRT would have been possible. SBRT on long bones (tibia is a long bone) is quite effective. My friend would have been spared radical surgery and the debilitating effects of that surgery.
I'm writing this not to depress my readers, but to give them a heads up. Doctors usually don't like to be questioned and challenged, but we as patients must question and challenge them. Even the best among them is going to miss stuff. When they miss stuff, the patient is the one who pays the price.
A few more points about SBRT:
It is not appropriate for everyone. The tumor has to be under a certain size, and in a location where damage to nearby organs is not likely. The patient has to be reasonably healthy. The doctor will likely use one of two scales to determine this: the Karnofsky performance scale or the ECOG Performance Status Scale. Also, a patient with widespread metastasis would not be a good candidate.
Playing Whack-A-Mole
The radiation oncologist who described my friend's treatment plan with SBRT used the term 'Whack-A-Mole'. This approach is appropriate for someone who has perhaps one, or several localized tumors. As these appear, they will simply be zapped by SBRT treatments. Going forward my friend will be vigilant. He will aggressively seek monitoring of his disease.
My friend has had a bad bit of luck in that doctors missed his tibia tumor. But he has the opportunity now for excellent care. He is not young. Nobody lives forever, but most of us want life if we can have it on reasonable terms. As far as my friend is concerned, Whack-A-Mole is a game he would be happy to play for many years to come.
The pictures on this page where all taken by me. These are places I plan to visit with my friend. Happy days ahead.
I'm so sorry to hear your friend has had to deal with this but I'm glad he's getting good care. I just lost one of my oldest friends to bladder cancer. It was already stage 4 and had spread to his bones by the time they found it in August. There seems to be so much more of this post-Pandemic.
I am so very sorry to hear about your friend's suffering.
Maybe people didn't go for care during the pandemic--fear of contagion?
I'm learning so much about terminology now. Before they were words. Now they are reality.
I read a quote from Aldous Huxley a little while ago. At the end of his life he gave advice:"... at the end...one has no more to offer by way of advice than 'Try to be a little kinder.” I guess that's the bottom line for all of us.
I'm glad your friend found a way forward and you have plans together.
It's difficult to know the questions to ask sometimes.
🌺 Thank you, @shanibeer. It's humbling to realize what we don't know. Lesson, seize the day, every day :)
This post is truly eye opening. Understanding the challenges of clear cell renal cancer and the complexities of treatment is very important. Patient awareness and proper questioning can be life saving. Appreciate your effort in sharing this.
Thank you, @rai-humair. When we get a diagnosis like renal cancer, I think we may feel a bit overwhelmed. That's a luxury. We have to inform ourselves to protect ourselves.
Wishing you the best
It shows how crucial it is to stay informed, ask questions, and keep up with check-ups, even after treatment. SBRT sounds like a helpful option too, and being your own advocate in healthcare makes a big difference.
We always have to be our own advocate, don't we? I think sometimes it seems easier to defer to the professionals, but that is a mistake.
Thank you for reading and commenting
<3
!discovery
Thank you very much, @phage93 🌷
Congratulations @agmoore! You have completed the following achievement on the Hive blockchain And have been rewarded with New badge(s)
Your next target is to reach 700 posts.
You can view your badges on your board and compare yourself to others in the Ranking
If you no longer want to receive notifications, reply to this comment with the word
STOPThis post was shared and voted inside the discord by the curators team of discovery-it
Join our Community and follow our Curation Trail
Discovery-it is also a Witness, vote for us here
Delegate to us for passive income. Check our 80% fee-back Program
The person who experiences this time is in a lot of trouble. If the people who support him are good, then this difficult time will also end quickly. Therefore, we should always help each other in difficult times.