2023-06-19 14:07:29
Is there any good news? Yes, sort of: “The doctor called this ‘the good of the bad’, because he envisioned some possible treatment options. I was lucky with a doctor who suspected granulosa cell tumor, because in many women that is not immediately clear. And then, sorry to say it like that, there is often just a bit of tampering in the investigations. With a rare cancer, that can be really fatal.”
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The ‘nice’ of granulosa cell tumor is that Tetske can be operated on and that no chemotherapy is required afterwards. On the other hand, the cancer can always come back. Being declared clean after five or ten years does not apply to this cancer variant. “You really have to be in control all your life. Now I’m a bit older, but I can imagine that this idea is very stressful for a twenty-something. Always having to live with the idea that the next tumor may already be growing.”
four tumors
This is also the case with Tetske. At the moment, four new tumors are growing in her abdomen, which she has been dealing with for a long time. “The first new tumor appeared three years ago, but it grew very slowly. Since the beginning of 2023, three have been added and things are going a bit faster. I now really feel like one, it’s getting in my way when exercising. It sounds insane, but walking with this is actually the best treatment. You cannot continue to operate on that abdomen indefinitely, of course there are risks involved. So waiting a little longer and then operating is preferable.”
Sometimes that makes her impatient and lies awake, sometimes she parks it and consciously focuses on other things. Her friends and family, for example. “My husband passed away a year and a half ago and he would like me to live to the fullest. So that’s what I do, with the amazing people around me. I still work, wonderful for the sense of purpose, and in recent months I have devoted myself to arranging good treatment. It’s not optimal, but I can deal with it.”
Radiations
Tetske is actually advised to take medication now in the run-up to an operation, but she does not want this. “Those pills are endocrine suppressing with significant side effects. Kind of like an overturned menopause. I don’t feel like that, I’m going for a good quality of life.” That’s why for the past six months, her mission has been to get radiation treatments, instead of medication and surgery. A tough challenge, because Dutch doctors are hesitant about this approach route.
“In countries around us, this is already being done for this tumour, also successfully. Here they are careful, but I finally found a doctor who wants to help me. I really had to fight hard for that myself, because with a rare cancer you often fall just outside the boat when it comes to protocols. And if you fall outside, there are often two options: either you get ‘can’t’ as an answer, or you become a kind of guinea pig.”
“I have very nice practitioners, absolutely, but all the ambiguity is sometimes difficult in combination with waiting. So it is very nice that a doctor is now really sticking his neck out for me.”
Fresh energy
And then Tetske is still a patient who does have her face with her and does thorough research into her options. Not all patients with a rare cancer are able or willing to do this. “I don’t just let myself be sent out of a consulting room,” says Tetske with a laugh. “Fortunately I have the energy to go for that, but I also want to dedicate myself to people who find that difficult. Then you are on the outside of your own treatment, not a nice feeling. That is why I am setting up a patient foundation, where people with granulosa cell tumor (and their families) can register.”
Furthermore, Tetske is fairly relaxed towards her treatment. “It is especially a relief that we can start now. I have planned my summer off and go into it with fresh courage and full of energy. That’s the way for me. I always say stay in the land of the living, not in the waiting room. Do not delay, love and live to the fullest, because you are still here. You have to make something of that.”
Tetske is committed to Patient Platform Rare Cancers, an organization that is committed to the recognition and recognition of this group of patients. More information can be found at rarecancers.nl.
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