- patriciaberkhof83
- Mar 15, 2021
- 3 min read
Last year, Dutch news papers stated that the overall survival rate of people with cancer increased the last couple years and that The Netherlands was doing really well compared to other European countries. However, there was an exception for rare cancers. With rare cancers, my country was not doing too well in comparison to other European countries.
Since I know that my tumor has been metastasized I was wondering why the hospital has been so reluctant about thorough check ups. They said a X-Ray once a year was enough, but the check up appointment was quarterly.
I: What are we going to do then every quarter if the X-Ray is once a year?
Answer: A talk how you are and an externally check up.
I: But you said in case this cancer spreads it's in the lungs, so I don't think these check ups are a good answer for that. (In my mind: WHAT, you got to be kidding!!)
Answer: Really, don't you worry. It is fine, once a year an X-Ray is enough, changes of mets are so low.
Because I still wasn't reassured I went for a second opinion at a specialized Cancer Institute. They said the same. Still after this expertise opinion it didn't make sense to me so I pushed the X-Ray forward. You know the outcome by now.
It was just up to me. I was also wondering why it was difficult to find an oncologist who was seriously coming up with a fighting treatment plan after we discovered the mets. Why are the oncologists acting like ostriches? This week, as we Dutch say, the monkey came out of the pocket. I attended a seminar regarding Phyllodes Tumors. I'm really happy to see an event like this for such a rare disease and hope more to come. In this seminar, an oncologist-surgeon specialized in breast cancer, a radiologist and a pathologist held a presentation about Phyllodes tumor. In the presentation the oncologist informed about follow up care after removal of a malignant Phyllodes tumor in the breast. She said it's difficult, as there are no guidelines, but she recommended not to look for mets actively but just to check in again once you have pain.
She said that the changes of survival are low and there are no guidelines what to do when they discover mets so it doesn't make any change if you discover them on time. And that's when I nearly fell off my chair, steam coming out of my ears!
The radiologist of the seminar jumped in, saying that so little of sarcoma's are known, that she thinks that radiotherapy for Phyllodes might be useful when mets in the lungs are discovered on time.
Let's praise this doctor!!
How can an oncologist say something like this if so little of a disease is known? On the contrary, the few studies there are of Phyllodes with lung mets are explicitly stating the importancy of checking for mets. The sooner they are discovered, the better the changes of survival or life extension are. Metastasized Phyllodes doesn't give any pain until the very end and then for sure little can be done.
If the general opinion of oncologists in the Netherlands is that it's better not to know if your rare cancer metastasized because there are no guidelines and the overall survival rate is low and we have no idea what to do, I think we have found the reason why we are behind in comparison with other countries, where the thought is the exact opposite: we have no idea, so we take immediate action to be sure that we can try as much as possible.
We know so much nowadays, we can even decompose the whole DNA of a tumor and find matching medicines or trials. So why is the glass half empty instead of half full and do our oncologists need studies with at least thousands of people before we have the guts to take action? Hello, it's is a rare disease and here's a guinea pig jumping in front of you...
