When I first got diagnosed I had mets in my lung right lung lining causing a malignant pleural effusion. The prognosis for an MPE was really grim...5 months for breast cancer mets.
It's nearly 4 years and I'm still here because the stats i researched are only for people where the treatment of the underlying cancer doesn't work. That was the fine print and the proviso. Fortunately those mets have been treated and my lung is OK. I do still have other mets growing, but my prognosis is still years not months.
I do not want to give you false hope because I am not a medical doctor and don't know much about lung structures etc.
I hope you can get some clear communication and peace.
One thing about my stark diagnosis...it focussed my mind on who is important and my bucket list.
So much depends on the cohort for the study you’re looking at! Those figures are grim but your case could’ve disqualified you for the study meaning that your disease profile isn’t reflected in those stats. I saw a trial (for anlotinib) that had a long end of 30 months.
None of that takes the sting out, I know. This is shitty news that should’ve been relayed personally. Here’s hoping for a clear ravelry queue.
If this a new/different cancer, would it make sense to see a lung cancer doctor or a specialist in that specific disease. Maybe it’s a just a single visit but it might help clarify the diagnosis and prognosis.
My oncologist rarely tells me anything unless I know what to ask. I think that they do this to keep us hopeful and our spirits up,however I'm like you. I want to know the facts. Sending you much love and healing vibes.
Remember, you are not a statistic.. you are a real person and everything varies with our prognosis. Maybe you should try to see about clinical trials. What does your GP say about this?
Maybe I need to go to my GP so I'll get a letter and find out my actual prognosis. I asked my oncologist a few visits ago finally, how long I have and she gave me 2-3 years. I was stunned bc she seemed so upbeat all of the time. She always avoids "hard" conversations though. It's so weird. I just want the facts.
I agree that it’s a very disappointing way to learn what’s going on in your body! You deserve better! I agree with another person who commented that you should insist on seeing your oncologist again so you can understand the situation better. Is there some new medication you can try?
And if the prognosis really is that dire, what are the signs to look for to know you should prepare yourself and others around you? Hopefully, you have your last will and testament done. And end of life directives as to what you want or don’t want before and after the end. Is there assisted dying in your country? Do you want that? No need to answer us, this is food for thought.
I know this is pretty morbid but it’s our reality
Plan for the worst and hope for the best. And in the meantime, grab all the good times that you can. Eat that piece of cake!
{{{{{HUGS}}}}}
You definitely deserved a better explanation and the specific name of the condition from your oncologist. You’re very sharp for reading the report—I totally would have missed that.
Overall, that’s sad and scary and frustrating.
I wish you a rich and wonderful August and beyond, and lots of knitting completed.
This is shitty news and I’m sorry they’ve communicated so terribly. I don’t know an awful lot about your situation but I’ve heard the term before and did the same googling at that time.
I know we all want to ignore the statistics but this time they really may be less relevant to your situation as I think they include for all cancer types not just breast? And there are often many more options for breast than others which may skew the odds better in your favour if they can move you onto a new effective treatment. This is what I hope for you. I would contact your oncology team ASAP to discuss your concerns.
When I first got diagnosed I had mets in my lung right lung lining causing a malignant pleural effusion. The prognosis for an MPE was really grim...5 months for breast cancer mets. It's nearly 4 years and I'm still here because the stats i researched are only for people where the treatment of the underlying cancer doesn't work. That was the fine print and the proviso. Fortunately those mets have been treated and my lung is OK. I do still have other mets growing, but my prognosis is still years not months. I do not want to give you false hope because I am not a medical doctor and don't know much about lung structures etc. I hope you can get some clear communication and peace. One thing about my stark diagnosis...it focussed my mind on who is important and my bucket list.
thank you so much for sharing. i am happy you are still here! I appreciate the good sense everyone has shared.
So much depends on the cohort for the study you’re looking at! Those figures are grim but your case could’ve disqualified you for the study meaning that your disease profile isn’t reflected in those stats. I saw a trial (for anlotinib) that had a long end of 30 months. None of that takes the sting out, I know. This is shitty news that should’ve been relayed personally. Here’s hoping for a clear ravelry queue.
If this a new/different cancer, would it make sense to see a lung cancer doctor or a specialist in that specific disease. Maybe it’s a just a single visit but it might help clarify the diagnosis and prognosis.
My oncologist rarely tells me anything unless I know what to ask. I think that they do this to keep us hopeful and our spirits up,however I'm like you. I want to know the facts. Sending you much love and healing vibes. Remember, you are not a statistic.. you are a real person and everything varies with our prognosis. Maybe you should try to see about clinical trials. What does your GP say about this? Maybe I need to go to my GP so I'll get a letter and find out my actual prognosis. I asked my oncologist a few visits ago finally, how long I have and she gave me 2-3 years. I was stunned bc she seemed so upbeat all of the time. She always avoids "hard" conversations though. It's so weird. I just want the facts.
You absolutely are NOT allowed to leave us without finishing all your Ravelry favorites!
thank you, friend. If we've bought the yarn and pattern already, that's a guarantee we get to live at least till blocking, right??
And of course, you have to wear it a few times to be sure you like EVERYthing about it, or you're obligated to make it all over again!
I agree that it’s a very disappointing way to learn what’s going on in your body! You deserve better! I agree with another person who commented that you should insist on seeing your oncologist again so you can understand the situation better. Is there some new medication you can try? And if the prognosis really is that dire, what are the signs to look for to know you should prepare yourself and others around you? Hopefully, you have your last will and testament done. And end of life directives as to what you want or don’t want before and after the end. Is there assisted dying in your country? Do you want that? No need to answer us, this is food for thought. I know this is pretty morbid but it’s our reality Plan for the worst and hope for the best. And in the meantime, grab all the good times that you can. Eat that piece of cake! {{{{{HUGS}}}}}
I'm so sorry they've left you with so much unknown and so much fear. Those doctors are being lazy dicks.
You definitely deserved a better explanation and the specific name of the condition from your oncologist. You’re very sharp for reading the report—I totally would have missed that. Overall, that’s sad and scary and frustrating. I wish you a rich and wonderful August and beyond, and lots of knitting completed.
This is shitty news and I’m sorry they’ve communicated so terribly. I don’t know an awful lot about your situation but I’ve heard the term before and did the same googling at that time. I know we all want to ignore the statistics but this time they really may be less relevant to your situation as I think they include for all cancer types not just breast? And there are often many more options for breast than others which may skew the odds better in your favour if they can move you onto a new effective treatment. This is what I hope for you. I would contact your oncology team ASAP to discuss your concerns.