Rare Cancer Day.....maybe
It was Rare Cancer Day this month. October the first. At least, I read it was but it seems rare cancer doesn't even get an official date for awareness. It misses out again.
I'm acknowledging this potential date of Rare Cancer Awareness anyway. I'm acknowledging it because it's bloody important that we talk about it.
I've lost track of how many times I've had to explain that my boobs are one of the few parts of my body still perfectly in tact. When I say cancer, the crowds shout “breast”. Now I love that there is a great awareness that breast cancer is a risk. Hopefully that means all the lovely ladies out there are staying conscious and checking any lumps. There are several women I am very glad had been doing just that and are still around to keep me company. My point is that as a 30-something women it's assumed that my breasts were the guilty party. That was not the case.
Macmillan (the number one point of reference for cancer in the UK) states that about 20% of people diagnosed with cancer in the UK have a rare type of cancer. Very rare cancers affect fewer than one in 100,000 people each year. The type of cancer I have doesn't even have it's own category in the "very rare cancer" pie chart; it falls into "other".
Adrenal Cancer affects fewer than one in one million people. This is not the time I hoped to be one in a million.
When I was told a tumour had been removed where my adrenal gland was, I was confused. As soon as I had enough control of my eyeballs to work my phone, I googled adrenal glands. I had no idea I even had these buggers in my body! Diagnosed with cancer of an organ I didn't even know existed. That's a slap.
Cancer is cancer and it's all crap. The reason I want to talk Rare Cancer is to address some of the extra challenges those of us "one in a million" suckers get. Treatment options for Adrenal Cancer are pretty old school. It's hard to research when there's such a small pool of participants. It's not just one in a million, it's even fewer who might end up with metastatic cancer (a spread to other organs). Then a fewer number who may not respond to the traditional treatments, which is what happened to me. I was in a position so rare I don't even know what the statistic is. I depended on my oncologist to advise based on things he read about trials and theories. There was no sure thing, just the opinion of him and the specialists around the world that he contacted to get more information. I am so fortunate to have an oncologist who was prepared to work so hard to help me live.
Before I started on the Mitotane tablets I was referred to an endocrinologist to help monitor the function of other organs in the endocrine system. My referral got picked up because of the uniqueness of my situation. I got assigned to the Mitotane expert in the team. He had the most experience of anyone there - he's seen one other patient using this drug. Within the ADHB, in his whole career, I was the second patient he'd encountered using this drug.
I needed regular blood tests to check the toxicity of the drug in my system. It's a drug that builds itself up and has a very long half life so it was a challenge to gauge what my dose should be after each appointment. Because the drug is not widely used in New Zealand my blood needed to be tested in Australia. It would be taken from my arm and put on ice to be sent over the ditch to be tested and then the results returned to us in New Zealand. On average it took about three weeks to get the results, at which point they weren't all that relevant because we'd been adjusting my dose based on whether I was doing the right amount of vomiting really. If it seemed too toxic I would drop back in the hope I could balance it out. I actually knew the protocol for how my blood tests needed to be done because the pathologists hadn't seen the test before. I would explain to them that they needed to put it on ice, no matter what they read. I would tell them they could find the protocol in their system and encourage them to check it before doing the test and I would check that they recorded the time the sample was taken. Rare disease requires the individual to become an expert in their own health. It's amazingly important that I know about my body and the medications I put in it because I know that no matter how wonderful the medical professional may be, it's likely they've never encountered my situation before.
For me, the biggest challenge of falling into this one in a million "other" box is that I have more limited treatment options. Cancer care is improving at an eye watering rate. In the time since I was diagnosed new treatments have been created and I've known that I've been holding out for the right one to come along. Immunotherapy is one of the "new" options.
I wasn't eligible for immunotherapy in the public system. There is a PD-1 inhibitor that is publicly funded but I don't have the "right" type of cancer to receive it. Instead I had to work out how to access a drug that could cost well over $100,000. Australia was the answer and a drug we hoped would be more effective than the others I had tried. Support from family, friends and strangers was also the answer. An overwhelming response to my need for help to access it.
I hope the public health system will adapt the way cancer care is viewed. Instead of trying to tick a box for the type of cancer to receive treatment, I hope we will see that cancers can respond differently to various treatments. As the treatments develop cancer care may become more personal and more accessible for those with rare cancers.
All cancer sucks. Let's focus on fighting it all. Create awareness to know our bodies, know if things are changing and push for something to be done. It's the reason I'm still alive.
I'm acknowledging this potential date of Rare Cancer Awareness anyway. I'm acknowledging it because it's bloody important that we talk about it.
I've lost track of how many times I've had to explain that my boobs are one of the few parts of my body still perfectly in tact. When I say cancer, the crowds shout “breast”. Now I love that there is a great awareness that breast cancer is a risk. Hopefully that means all the lovely ladies out there are staying conscious and checking any lumps. There are several women I am very glad had been doing just that and are still around to keep me company. My point is that as a 30-something women it's assumed that my breasts were the guilty party. That was not the case.
Macmillan (the number one point of reference for cancer in the UK) states that about 20% of people diagnosed with cancer in the UK have a rare type of cancer. Very rare cancers affect fewer than one in 100,000 people each year. The type of cancer I have doesn't even have it's own category in the "very rare cancer" pie chart; it falls into "other".
Adrenal Cancer affects fewer than one in one million people. This is not the time I hoped to be one in a million.
When I was told a tumour had been removed where my adrenal gland was, I was confused. As soon as I had enough control of my eyeballs to work my phone, I googled adrenal glands. I had no idea I even had these buggers in my body! Diagnosed with cancer of an organ I didn't even know existed. That's a slap.
Cancer is cancer and it's all crap. The reason I want to talk Rare Cancer is to address some of the extra challenges those of us "one in a million" suckers get. Treatment options for Adrenal Cancer are pretty old school. It's hard to research when there's such a small pool of participants. It's not just one in a million, it's even fewer who might end up with metastatic cancer (a spread to other organs). Then a fewer number who may not respond to the traditional treatments, which is what happened to me. I was in a position so rare I don't even know what the statistic is. I depended on my oncologist to advise based on things he read about trials and theories. There was no sure thing, just the opinion of him and the specialists around the world that he contacted to get more information. I am so fortunate to have an oncologist who was prepared to work so hard to help me live.
Before I started on the Mitotane tablets I was referred to an endocrinologist to help monitor the function of other organs in the endocrine system. My referral got picked up because of the uniqueness of my situation. I got assigned to the Mitotane expert in the team. He had the most experience of anyone there - he's seen one other patient using this drug. Within the ADHB, in his whole career, I was the second patient he'd encountered using this drug.
I needed regular blood tests to check the toxicity of the drug in my system. It's a drug that builds itself up and has a very long half life so it was a challenge to gauge what my dose should be after each appointment. Because the drug is not widely used in New Zealand my blood needed to be tested in Australia. It would be taken from my arm and put on ice to be sent over the ditch to be tested and then the results returned to us in New Zealand. On average it took about three weeks to get the results, at which point they weren't all that relevant because we'd been adjusting my dose based on whether I was doing the right amount of vomiting really. If it seemed too toxic I would drop back in the hope I could balance it out. I actually knew the protocol for how my blood tests needed to be done because the pathologists hadn't seen the test before. I would explain to them that they needed to put it on ice, no matter what they read. I would tell them they could find the protocol in their system and encourage them to check it before doing the test and I would check that they recorded the time the sample was taken. Rare disease requires the individual to become an expert in their own health. It's amazingly important that I know about my body and the medications I put in it because I know that no matter how wonderful the medical professional may be, it's likely they've never encountered my situation before.
For me, the biggest challenge of falling into this one in a million "other" box is that I have more limited treatment options. Cancer care is improving at an eye watering rate. In the time since I was diagnosed new treatments have been created and I've known that I've been holding out for the right one to come along. Immunotherapy is one of the "new" options.
I wasn't eligible for immunotherapy in the public system. There is a PD-1 inhibitor that is publicly funded but I don't have the "right" type of cancer to receive it. Instead I had to work out how to access a drug that could cost well over $100,000. Australia was the answer and a drug we hoped would be more effective than the others I had tried. Support from family, friends and strangers was also the answer. An overwhelming response to my need for help to access it.
I hope the public health system will adapt the way cancer care is viewed. Instead of trying to tick a box for the type of cancer to receive treatment, I hope we will see that cancers can respond differently to various treatments. As the treatments develop cancer care may become more personal and more accessible for those with rare cancers.
All cancer sucks. Let's focus on fighting it all. Create awareness to know our bodies, know if things are changing and push for something to be done. It's the reason I'm still alive.
Comments
Post a Comment