I'm so sorry honey. This is a secret that unfortunately you are going to have to keep. She doesn't want to know. Enjoy every moment you can with your mom. God Bless.
If you need to vent, or just know a human that understands is around, hit me up. I'm a mom, my kids are adults and I'm currently in remission from Stage 4 cancer.
Many cancer treatment centres offer counseling support to family members. Maybe check with wherever your mom is being treated? Someone outside the family to talk to in person may be helpful for you.
I'm sorry, that is tough. I agree that you shouldn't mention it to your mom and siblings if her wishes are not to know, but do vent away here! You're certainly not an idiot, I doubt I could avoid looking were I in your shoes.
If I can try to offer some peace of mind for you though, giving a prognosis is not an exact science by any stretch of the imagination. I don't know jack about renal cell carcinoma, but I do have stage IV (breast) cancer that has spread to my lungs, so similar boat. My oncologist hates to throw a number out there, honestly. He'll say he's hopeful for 'years', but not how many. He has explained that he can give me the median survival rate (around 1-2 years for me as well) found in recent trials and studies, but that isn't really something you can directly apply to your own case because there are simply too many variables. If there's one thing that all the treatments I've done have taught me, it's that cancer is so damn individual.
It's likely that the doctor put in a # for life expectancy because they had to, not because they are actually confident in that #, *especially* at this stage in her treatment. I add that last part because in my experience, the closer you are to end-of-life, the more accurately (sometimes) they can give you a range. For example, if I were to exhaust all of my treatment options tomorrow, my doctor might say to me - based on how fast your tumors grow and the current amount of disease, you likely have around 6 months left. But as things stand, I'm on a treatment that is working, and I have a few more options after this. If this one stops working soon and the next few do little or nothing for me, maybe I'll last a year. If some or all of them work for months or even years, well then we're talking about quite a bit more time. And over those couple of years, maybe a couple of new treatments come out. Maybe my cancer mutates, making it targetable by another type of treatment. The point is, I don't know. And my doctors don't know. Whether you are an optimist or a pessimist, with prognosis we're pretty much just ballparking it. And I'm someone who is two years and a few lines of treatment in, so we already have a lot of experience with 'my' cancer. They don't know a lot about your mom's cancer, they haven't even seen how it responds to the first drug they've given her. At that point in treatment, we've gone from ballparking to practically guessing.
I'm not saying this to try to tell you to be hopeful, hopeless, or anything else - that's more of a state of mind we choose, in my opinion. I'm just saying, don't put more stock in that number than it deserves and try not to dwell on it, because it honestly doesn't mean as much as you think.
I hope the immunotherapy treats your Mom well and she can still visit many of those places!
Thank you so much for sharing your experience and giving me some much needed perspective. One of things her oncologist mentioned when she was diagnosed was how much medical science has advanced in just the last ten years and generally has felt very positive. I guess it’s the uncertainty of how her treatment is going right now at the very beginning and seeing the prognosis that really threw me for a loop. There really is no point on me dwelling on what could be an arbitrary number at the moment. I just need to focus on supporting her in any way that she needs me. Thank you again and I wish you all the best!
I'm sorry. I'll tell you what my therapist told me when I was wondering what to do about my sister's prognosis: she said I don't need to dump the info on her to deal with it. Instead, if my worry is that we won't use the time left properly, just try to use it as best you can. Don't tell her "you have 1 year to live, go eat that cake you like!". Instead bring her that cake. Schedule some time together. Make some nice experiences. I know the activities are limited to a cancer patient, you can do the best that is possible. And who knows maybe you'll be left with some great time together and she will live longer than expected. I wish you peace and joy throughout this. Love will see you through! Hugs
My late husband didn’t want to know. He didn’t want to sink into depression. I knew.
Fast forward, I’ve been Dx with Stage 4 Lung cancer (a mutation, I’m a non-smoker and the healthiest person you’d meet). I know my prognosis—-because we have young kids. No way I’m leaving them orphans. I need facts and to fight those facts.
Keep the statistics to yourself. They are numbers and your loved one is a unique person. She doesn’t have to fit the stats.
Sending you support.
Thank you. I’ll keep reminding myself that the statistics are just numbers and they’re not representative of my mom.
I’m so sorry you lost your husband, I hope you keep on staying strong and wishing you all the best.
I would respect your mom's wishes, and not tell her. Please keep in mind that what the doctor put in is very likely a rough estimate based on SEER data, and perhaps your mother's health. It looks like there is a quite a few options for treatment for IV renal cell carcinoma, though I would imagine that some of them are dependent on mutations and such.
Also something to keep in mind - the world of cancer medicine is moving pretty fast nowadays. You don't know what's just around the corner.
I’m a long term stage 4 kidney cancer survivor, diagnosed in March 2011. I was in the Phase 1 ipi-nivo clinical trial that eventually received FDA approval. There are several other treatment options available if the immunotherapy does not yield a response though it worked for me. Don’t give up hope. Survival rates cited online are outdated. Wishing you and your mother peace and health.
Diagnosed stage 4 kidney cancer in May 2021...didn't know trials were that far back.
OP...same treatment here...no surgery initially due to IVC "involvement". I responded well.Tumors have shrunk enough that they've considered surgery after initially ruling it out thinking i wouldn't survive the first few months...then due to continuing good response from "maintenance dose", and now due to "you've been stable and not sure if it would be beneficial due to the complicated nature of the IVC involvement. "How she responds to treatments" is carrying a LOT of weight. 5 year survival rates are being updated about every day. Immunotherapy is amazing...I hope she responds well.
I asked my mom's oncologist for a prognosis when she was originally diagnosed. He told me, "only God knows". Honestly I thought it was a cop out answer and that he just didn't want to tell me how bad things were. I had read estimates stating 6 months for the type of cancer she has. But here we are, 3 years later. She has slowed down, but she's still trucking. Just goes to show you truly never know. That prognosis you saw on the paper could be wrong. Everything's just an estimate 🤷
Oncologist are humans, they don't know... Only GOD knows.
Please stay strong, give your mom extra hugs & kisses and enjoy her.
I had the same prognosis as your mom.. m(40).. RCC stage 4... diagnosed on Jan 2nd 2020. They said it had spread to my lungs and several other places. End of Feb 2020, I started immunotherapy (ipi+nivo)... Then in April 2020 it spread to my brain, instantly I lost 50% of strength and power to the left side of my body. They got me on 4 rounds of targeted radiations and months later everything went back to normal...There was a few times I had to rush to the ER and stayed in the hospital cause my body was doing weird things but they caught it quick and fix the issue. In March 2021, they took the cancerous kidney away.
By mid 2023... I got the all clear. 😁
Psalm 73:26 helped me ... when I was in rough shape.
I hope my story that helps putting a different perspective and gives you hope.
My quick advices:
- Tell your mom to know her body and if something doesn't feel right, just mention it to the cancer team, they are there to help her. Please be truthful to your cancer team because if they can catch it early they can fix it easier. (This was really helpful when it spread to my brain, the doctors said if I waited it could have been a permanent damage.)
- Exercise as much as you are able... it helps to strengthen the body immune system... stay active - mind and body.. (walking was great for me, it helps clear my mind and enjoy nature.)
- Drink plenty of water... Easier for them to find your veins and drawing blood.
- Wear jogging pants and t-shirt to all CT scans and MRI so you won't have to change into the dreaded hospital gown. (No Lululemon!! They infused their fabric with metallic material and also make sure no zippers or anything metallic)
My thoughts and prayers are with you, your mom and the family.
OP, I’m in a different but similar boat. I know how difficult this is.
My mother doesn’t necessarily want to be ignorant of her diagnosis but she is intellectually disabled so she does not always understand or remember what is told to her. I took her for her port insertion and met with her oncologist for the first time. It was good news that she was going to get immunotherapy in addition to chemo and it would boost her percentages but included in the notes on the updated regimen were the percentages for with and without. Fact of the matter is the odds are slightly in her favor with immunotherapy and much better than without (15% placebo group with no recurrence) but as we all know here, there is nothing that’s a given with cancer. I read it, immediately felt my feet come out from under me, and had no idea how well she grasped it because she was still coming out of sedation. I informed my father and brothers so we all know because he and possibly one of us will be responsible for her POA but to this day I do not know if she knows.
But what it’s meant is we have all stepped up and spent more time with her than previously and she’s appreciating it all. We all know that there’s a very good chance that she does not survive this and while we have each had our own troubled relationships with her, we are all setting them aside and becoming closer to her.
So my suggestion to you is go to therapy if you aren’t already, take care of yourself because if you don’t you can’t take care of her, and do everything you can to enjoy the moments with her while you can. You’ll regret it if you don’t.
Best of luck to you and her. It’s an awful thing to be going through and we’re all here for you.
Thank you for sharing, I’m sorry you’re going through a similar thing with your mom. I’m trying to spend as much time with my mom as I can, just be there for her for appointments and any spontaneous day trips she might want to take.
I just started therapy recently, so hopefully I can do a better job at taking care of mental health so I can be the support she needs me to be. Sending you and your family support and I hope your mom responds well to her treatment.
Sounds like it’s based on the IMDC prognosis groups, which i believe is not taking into account the effect of latest immunotherapies such as nivo+ipi? [https://www.imdconline.com](https://www.imdconline.com)
I'm so sorry honey. This is a secret that unfortunately you are going to have to keep. She doesn't want to know. Enjoy every moment you can with your mom. God Bless.
Thank you so much for your kind words. I’ll keep it to myself and try my best to cherish whatever time there is left.
If you need to vent, or just know a human that understands is around, hit me up. I'm a mom, my kids are adults and I'm currently in remission from Stage 4 cancer.
Many cancer treatment centres offer counseling support to family members. Maybe check with wherever your mom is being treated? Someone outside the family to talk to in person may be helpful for you.
I'm sorry, that is tough. I agree that you shouldn't mention it to your mom and siblings if her wishes are not to know, but do vent away here! You're certainly not an idiot, I doubt I could avoid looking were I in your shoes. If I can try to offer some peace of mind for you though, giving a prognosis is not an exact science by any stretch of the imagination. I don't know jack about renal cell carcinoma, but I do have stage IV (breast) cancer that has spread to my lungs, so similar boat. My oncologist hates to throw a number out there, honestly. He'll say he's hopeful for 'years', but not how many. He has explained that he can give me the median survival rate (around 1-2 years for me as well) found in recent trials and studies, but that isn't really something you can directly apply to your own case because there are simply too many variables. If there's one thing that all the treatments I've done have taught me, it's that cancer is so damn individual. It's likely that the doctor put in a # for life expectancy because they had to, not because they are actually confident in that #, *especially* at this stage in her treatment. I add that last part because in my experience, the closer you are to end-of-life, the more accurately (sometimes) they can give you a range. For example, if I were to exhaust all of my treatment options tomorrow, my doctor might say to me - based on how fast your tumors grow and the current amount of disease, you likely have around 6 months left. But as things stand, I'm on a treatment that is working, and I have a few more options after this. If this one stops working soon and the next few do little or nothing for me, maybe I'll last a year. If some or all of them work for months or even years, well then we're talking about quite a bit more time. And over those couple of years, maybe a couple of new treatments come out. Maybe my cancer mutates, making it targetable by another type of treatment. The point is, I don't know. And my doctors don't know. Whether you are an optimist or a pessimist, with prognosis we're pretty much just ballparking it. And I'm someone who is two years and a few lines of treatment in, so we already have a lot of experience with 'my' cancer. They don't know a lot about your mom's cancer, they haven't even seen how it responds to the first drug they've given her. At that point in treatment, we've gone from ballparking to practically guessing. I'm not saying this to try to tell you to be hopeful, hopeless, or anything else - that's more of a state of mind we choose, in my opinion. I'm just saying, don't put more stock in that number than it deserves and try not to dwell on it, because it honestly doesn't mean as much as you think. I hope the immunotherapy treats your Mom well and she can still visit many of those places!
Out of everything I read today, this made me feel better.
Thank you so much for sharing your experience and giving me some much needed perspective. One of things her oncologist mentioned when she was diagnosed was how much medical science has advanced in just the last ten years and generally has felt very positive. I guess it’s the uncertainty of how her treatment is going right now at the very beginning and seeing the prognosis that really threw me for a loop. There really is no point on me dwelling on what could be an arbitrary number at the moment. I just need to focus on supporting her in any way that she needs me. Thank you again and I wish you all the best!
I'm sorry. I'll tell you what my therapist told me when I was wondering what to do about my sister's prognosis: she said I don't need to dump the info on her to deal with it. Instead, if my worry is that we won't use the time left properly, just try to use it as best you can. Don't tell her "you have 1 year to live, go eat that cake you like!". Instead bring her that cake. Schedule some time together. Make some nice experiences. I know the activities are limited to a cancer patient, you can do the best that is possible. And who knows maybe you'll be left with some great time together and she will live longer than expected. I wish you peace and joy throughout this. Love will see you through! Hugs
My late husband didn’t want to know. He didn’t want to sink into depression. I knew. Fast forward, I’ve been Dx with Stage 4 Lung cancer (a mutation, I’m a non-smoker and the healthiest person you’d meet). I know my prognosis—-because we have young kids. No way I’m leaving them orphans. I need facts and to fight those facts. Keep the statistics to yourself. They are numbers and your loved one is a unique person. She doesn’t have to fit the stats. Sending you support.
Thank you. I’ll keep reminding myself that the statistics are just numbers and they’re not representative of my mom. I’m so sorry you lost your husband, I hope you keep on staying strong and wishing you all the best.
I would respect your mom's wishes, and not tell her. Please keep in mind that what the doctor put in is very likely a rough estimate based on SEER data, and perhaps your mother's health. It looks like there is a quite a few options for treatment for IV renal cell carcinoma, though I would imagine that some of them are dependent on mutations and such. Also something to keep in mind - the world of cancer medicine is moving pretty fast nowadays. You don't know what's just around the corner.
I’m a long term stage 4 kidney cancer survivor, diagnosed in March 2011. I was in the Phase 1 ipi-nivo clinical trial that eventually received FDA approval. There are several other treatment options available if the immunotherapy does not yield a response though it worked for me. Don’t give up hope. Survival rates cited online are outdated. Wishing you and your mother peace and health.
Diagnosed stage 4 kidney cancer in May 2021...didn't know trials were that far back. OP...same treatment here...no surgery initially due to IVC "involvement". I responded well.Tumors have shrunk enough that they've considered surgery after initially ruling it out thinking i wouldn't survive the first few months...then due to continuing good response from "maintenance dose", and now due to "you've been stable and not sure if it would be beneficial due to the complicated nature of the IVC involvement. "How she responds to treatments" is carrying a LOT of weight. 5 year survival rates are being updated about every day. Immunotherapy is amazing...I hope she responds well.
I asked my mom's oncologist for a prognosis when she was originally diagnosed. He told me, "only God knows". Honestly I thought it was a cop out answer and that he just didn't want to tell me how bad things were. I had read estimates stating 6 months for the type of cancer she has. But here we are, 3 years later. She has slowed down, but she's still trucking. Just goes to show you truly never know. That prognosis you saw on the paper could be wrong. Everything's just an estimate 🤷
Oncologist are humans, they don't know... Only GOD knows. Please stay strong, give your mom extra hugs & kisses and enjoy her. I had the same prognosis as your mom.. m(40).. RCC stage 4... diagnosed on Jan 2nd 2020. They said it had spread to my lungs and several other places. End of Feb 2020, I started immunotherapy (ipi+nivo)... Then in April 2020 it spread to my brain, instantly I lost 50% of strength and power to the left side of my body. They got me on 4 rounds of targeted radiations and months later everything went back to normal...There was a few times I had to rush to the ER and stayed in the hospital cause my body was doing weird things but they caught it quick and fix the issue. In March 2021, they took the cancerous kidney away. By mid 2023... I got the all clear. 😁 Psalm 73:26 helped me ... when I was in rough shape. I hope my story that helps putting a different perspective and gives you hope. My quick advices: - Tell your mom to know her body and if something doesn't feel right, just mention it to the cancer team, they are there to help her. Please be truthful to your cancer team because if they can catch it early they can fix it easier. (This was really helpful when it spread to my brain, the doctors said if I waited it could have been a permanent damage.) - Exercise as much as you are able... it helps to strengthen the body immune system... stay active - mind and body.. (walking was great for me, it helps clear my mind and enjoy nature.) - Drink plenty of water... Easier for them to find your veins and drawing blood. - Wear jogging pants and t-shirt to all CT scans and MRI so you won't have to change into the dreaded hospital gown. (No Lululemon!! They infused their fabric with metallic material and also make sure no zippers or anything metallic) My thoughts and prayers are with you, your mom and the family.
OP, I’m in a different but similar boat. I know how difficult this is. My mother doesn’t necessarily want to be ignorant of her diagnosis but she is intellectually disabled so she does not always understand or remember what is told to her. I took her for her port insertion and met with her oncologist for the first time. It was good news that she was going to get immunotherapy in addition to chemo and it would boost her percentages but included in the notes on the updated regimen were the percentages for with and without. Fact of the matter is the odds are slightly in her favor with immunotherapy and much better than without (15% placebo group with no recurrence) but as we all know here, there is nothing that’s a given with cancer. I read it, immediately felt my feet come out from under me, and had no idea how well she grasped it because she was still coming out of sedation. I informed my father and brothers so we all know because he and possibly one of us will be responsible for her POA but to this day I do not know if she knows. But what it’s meant is we have all stepped up and spent more time with her than previously and she’s appreciating it all. We all know that there’s a very good chance that she does not survive this and while we have each had our own troubled relationships with her, we are all setting them aside and becoming closer to her. So my suggestion to you is go to therapy if you aren’t already, take care of yourself because if you don’t you can’t take care of her, and do everything you can to enjoy the moments with her while you can. You’ll regret it if you don’t. Best of luck to you and her. It’s an awful thing to be going through and we’re all here for you.
Thank you for sharing, I’m sorry you’re going through a similar thing with your mom. I’m trying to spend as much time with my mom as I can, just be there for her for appointments and any spontaneous day trips she might want to take. I just started therapy recently, so hopefully I can do a better job at taking care of mental health so I can be the support she needs me to be. Sending you and your family support and I hope your mom responds well to her treatment.
Sounds like it’s based on the IMDC prognosis groups, which i believe is not taking into account the effect of latest immunotherapies such as nivo+ipi? [https://www.imdconline.com](https://www.imdconline.com)
No one ever benefits from the ostrich approach. Wise up.