Hi Tta, I think one of the reasons that others struggle with the concept of MPN’s being a cancer is that we can feel like crap on the inside but look ok on the outside. It’s definitely not one of your sexy cancers. Please I hope I don’t offend anyone as I don’t think any cancer is sexy but some cancers receive huge funding eg breast cancer. My sister had a mastectomy and I know how difficult that was for her. Physically she had lost a breast but thank goodness it was insitu and she is “cured”.
Further to that despite there being growing numbers of lovely people to this forum, we are small in comparison. Unfortunately ours is just a shitty disease with so many variants and unknowns. That is why this forum is so important! Thank you lovely people out there for all your questions and support x

I was never given a "cancer" diagnosis. I had to push for it when I started different symptoms. I had PV for 15 years, and nothing was said re: morphing into myelofibrosis. I finally had a bone marrow biopsy, which confirmed my concerns. This is why my husband and I decided to turn to the Palliative Care Team at Lahey Hospital. It's not hospice. It improves the quality of our lives. My hematologist Oncologist responded this way when I was in a great deal of abdominal pain. "You shouldn't be in pain as you are on Jakafi." Also, "You need to get in touch with your Primary Care re: Pain Management." The doctor on Palliative Care Team addressed this issue with all the hematologists/oncologists, and the next thing that happened was I was scheduled for a CT scan and more blood work.. I have done a lot of research on this subject. I found an important research/study which said only 2% of all HO doctors globally refer their patients to Palliative Care. We must be Advocates for ourselves. This site is so important for us.

Wow, Tatiana. I'll keep all that you say in mind. I haven't personally had to deal with situations where the cancer/not cancer distinction was important. I'm feeling happy about changing from my grouchy, insensitive, elderly hematologist to a new middle-aged one who understands my issues with HU side effects and has a less rigid approach. Meanwhile, the heavy rain outside has stopped briefly. I'm off to deliver holiday cards to neighbors. Happy holidays to you and to anyone who reads this.

This is such an interesting subject. When I was first diagnosed with ET in February 2011, the doctor never used the word "cancer" but a social worker called to see if she could help me in any way. I found that very confusing and a bit upsetting.
In retrospect, I've come to believe that at least one part of doctors' reluctance to use the word "cancer" is the the rarity of MPNs. Of course, that rarity also makes this whole journey so much trickier to navigate.
💌Good luck to us all.

Hi Janice,

Solidarity 🌷.

That is very poor of them, very poor indeed. Because MPNs are cancer, chronic cancer is still cancer, there are many chronic cancers out there similar to MPNs and they are called for what they are, chronic cancers. In some countries calling a cancer on its name means access to a social worker, access to disability benefits and assistance, counselling, fast tracking for access to medical developments, etc. It makes a world of difference, reduces suffering and improves quality of life. Refusing to call MPNs cancers because for some specialist cancer is only acute in many ways risks being unethical. It is bad enough that MPNs as rare illnesses, pool very little resources, and many physicians are oblivious they exist. One should not add to that via not acknowledging that it is a chronic cancer.
My doctors did not call it a cancer initially just because they did not want to scare me. But they reversed course the moment I was having stroke symptoms and one of them was on the phone with me telling me to go immediately to the ER and found the courage to finally tell me it is, in the end, a cancer.
I do not know whose feelings doctors think they are protecting, but refusal to use the terminology chronic cancer (official definition) is not helping patients at all.
The more something is defined in a clear category, the easier it is for physicians to get what it is. When a specialist has a personal definition of an illness that does not match the official definition, they might end up conveying unclear information to our GPs, families, or to another specialist. I might sound tough, but having to educate every physician I see is much easier when my hematologist puts the chronic cancer wording forward.
The words of a physician who just had a conversation with a specialist about a patient with ET said to the patient: "You told me that you have a cancer but your specialist told me you don't. Why would you lie to me?" The patient was sent home full of symptoms and no help.
The definition of ET is clear that it is a chronic cancer and patients have enough gaslighting as it is without having the added headache of a specialist rebelling against an official definition.
"Essential thrombocythaemia (ET) is a rare blood cancer that causes a high number of blood cells called platelets to form. These are blood cells involved in blood clotting."
https://www.cancerresearchuk.org/about-cancer/o...

Many hugs of support,
Tatiana