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Talking Frankly about Living with Advanced Cancer

Posted by Colleen Young, Connect Director @colleenyoung, Sep 1, 2017

Are you living with advanced cancer (sometimes referred to as stage 4 or metastatic cancer)?
This discussion is a safe space where you can connect with others to talk about the realities of living with limited time. It's not easy to find people who understand what it is like. For many reasons, you may not feel comfortable talking about your thoughts and emotions with friends or family. Perhaps you are alone. Even if you are surrounded by people who support you, you may experience intense loneliness.

Connect is a place where honest conversation can safely take place. You can speak frankly and be heard without judgement. I invite you to share your reality facing death and living now.

Interested in more discussions like this? Go to the Cancer Support Group.

allisonsnow | @allisonsnow | Dec 4, 2017
In reply to @allisonsnow "Just had my mid-way scans for my chemo and am trying to figure out what is..." + (show)
@allisonsnow

Just had my mid-way scans for my chemo and am trying to figure out what is going on. Was told if we saw no improvement they would not suggest the continuation of the gemzar and xeloda. What the scans showed was no shrinkage and many areas had some growth BUT Dr. said to continue chemo treatments. I have to take what he said as truth as he showed me only one scan and sped through the discussion. I was still in some shock and a lot of disappointment to take in all he said. He showed the most enthusiasim when I said I would take part in a study.
When I asked what the next step would be if we still saw no improvement and he said try a different chemo regiment though he didn't know what. I am not a guinea pig for random drugs with no track record !!! I have made it clear I chose quality of life overall. The Dr. seemed to think I was handling side effects very easily which is not the case it just looks that way. I constantly hear how good I look which is nice but people then take for granted I feel good which is far from the truth some of the side effects are quite nasty and I am afraid how long they will take to go away. I present myself well when I do go out and I just don't go put when I can't appear healthy.But anyway the Dr. didn't seem to want to pursue the severity of my side effects and as I said I was in a bit of shock and surprise. Sorry I am not usually so whinny but I am still deciding what to do. Thanks for listening

for those that don't know me ( I haven't been on in a while) I have metsastic Thymoma

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Thank you Teresa knowing there is someone out there that understands REALLY GETS IT! is a comfort. Not that I would wish cancer on anyone but we all do belong to the same club, sometimes we need support and sometimes (if we are lucky) we are able to support others. helping someone get thru a rough day can help to make us feel worthy, to feel needed and sometimes that is all we ask. To everyone out there have a good night (you should be asleep !)

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vsinn2000 | @vsinn2000 | Dec 4, 2017
In reply to @vsinn2000 "Allison, I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment..." + (show)
@vsinn2000

Allison,
I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment with both doctor and radiologist would give you the information you are looking for in a neutral setting? It sounds as though you are frustrated right now but have been with your doctor for a while. I'm new enough that I am not sure if each hospital has their own set up, or if a care team meeting would be a normal part of the process? I am still meeting all of mine to get treatment started but I believe I will ask if this would be possible if I had concern or an issue like this.
Vicky

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Teresa,
I have simply got to stop looking at the internet. Do you know of anyone who has had this type of radiation? I'm totally panicked by images of internal treatments, speculum being used, I can't do it. I. cannot. Do. this.

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Linda | @llwortman | Dec 3, 2017
In reply to @allisonsnow "Just had my mid-way scans for my chemo and am trying to figure out what is..." + (show)
@allisonsnow

Just had my mid-way scans for my chemo and am trying to figure out what is going on. Was told if we saw no improvement they would not suggest the continuation of the gemzar and xeloda. What the scans showed was no shrinkage and many areas had some growth BUT Dr. said to continue chemo treatments. I have to take what he said as truth as he showed me only one scan and sped through the discussion. I was still in some shock and a lot of disappointment to take in all he said. He showed the most enthusiasim when I said I would take part in a study.
When I asked what the next step would be if we still saw no improvement and he said try a different chemo regiment though he didn't know what. I am not a guinea pig for random drugs with no track record !!! I have made it clear I chose quality of life overall. The Dr. seemed to think I was handling side effects very easily which is not the case it just looks that way. I constantly hear how good I look which is nice but people then take for granted I feel good which is far from the truth some of the side effects are quite nasty and I am afraid how long they will take to go away. I present myself well when I do go out and I just don't go put when I can't appear healthy.But anyway the Dr. didn't seem to want to pursue the severity of my side effects and as I said I was in a bit of shock and surprise. Sorry I am not usually so whinny but I am still deciding what to do. Thanks for listening

for those that don't know me ( I haven't been on in a while) I have metsastic Thymoma

Jump to this post

You are brave and I love your attitude! Keep it up. If more people were like you, it is my feeling we would have better health care across the country.
You deserve a cyber hug
linda

REPLY
allisonsnow | @allisonsnow | Dec 3, 2017
In reply to @allisonsnow "Just had my mid-way scans for my chemo and am trying to figure out what is..." + (show)
@allisonsnow

Just had my mid-way scans for my chemo and am trying to figure out what is going on. Was told if we saw no improvement they would not suggest the continuation of the gemzar and xeloda. What the scans showed was no shrinkage and many areas had some growth BUT Dr. said to continue chemo treatments. I have to take what he said as truth as he showed me only one scan and sped through the discussion. I was still in some shock and a lot of disappointment to take in all he said. He showed the most enthusiasim when I said I would take part in a study.
When I asked what the next step would be if we still saw no improvement and he said try a different chemo regiment though he didn't know what. I am not a guinea pig for random drugs with no track record !!! I have made it clear I chose quality of life overall. The Dr. seemed to think I was handling side effects very easily which is not the case it just looks that way. I constantly hear how good I look which is nice but people then take for granted I feel good which is far from the truth some of the side effects are quite nasty and I am afraid how long they will take to go away. I present myself well when I do go out and I just don't go put when I can't appear healthy.But anyway the Dr. didn't seem to want to pursue the severity of my side effects and as I said I was in a bit of shock and surprise. Sorry I am not usually so whinny but I am still deciding what to do. Thanks for listening

for those that don't know me ( I haven't been on in a while) I have metsastic Thymoma

Jump to this post

thanks for your encouragement I also had a Dr./resident that the first time he looked at my file was as he walked into the room so I can connect with your feelings there. I also have insisted on a new oncologist, since my old one left the clinic (loved him) I have gone thru three. I know what I need and won't settle for less. My last appt. I had a sub as my Dr. and wasn't impressed. Research is my middle name especially since I have a very rare cancer, most dr.s don't even know of it, if I wanted to find out everything there was to know and where the best treatment was I had to do it myself. I already knew exactly what research study/trial they used to determine what drugs they tried the first time. Still don't know what I am going to do but I am waiting to hear what my chemo oncologist will say and maybe he and I can discuss in more detail my scans and the radiologists findings. Thanks again for EVERYONES support

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 3, 2017
In reply to @vsinn2000 "Allison, I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment..." + (show)
@vsinn2000

Allison,
I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment with both doctor and radiologist would give you the information you are looking for in a neutral setting? It sounds as though you are frustrated right now but have been with your doctor for a while. I'm new enough that I am not sure if each hospital has their own set up, or if a care team meeting would be a normal part of the process? I am still meeting all of mine to get treatment started but I believe I will ask if this would be possible if I had concern or an issue like this.
Vicky

Jump to this post

@vsinn2000 Vicky: I can only imagine your thoughts/fears about loss of dignity and personal space! I hope that all of the medical people attending you on Tuesday will be extra kind and thoughtful so you can get through this with as little anxiety as possible.

Blessings,
Teresa

REPLY
vsinn2000 | @vsinn2000 | Dec 3, 2017
In reply to @vsinn2000 "Allison, I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment..." + (show)
@vsinn2000

Allison,
I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment with both doctor and radiologist would give you the information you are looking for in a neutral setting? It sounds as though you are frustrated right now but have been with your doctor for a while. I'm new enough that I am not sure if each hospital has their own set up, or if a care team meeting would be a normal part of the process? I am still meeting all of mine to get treatment started but I believe I will ask if this would be possible if I had concern or an issue like this.
Vicky

Jump to this post

Tuesday. I lived through the sedated exam last Thursday.. A story all its own. Lol. I meet with radiologist and do the simulation (?) for rad therapy. Not looking forward to it at all. Dignity, personal space thiNG is full blown again.
Vicky

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 3, 2017
In reply to @vsinn2000 "Allison, I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment..." + (show)
@vsinn2000

Allison,
I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment with both doctor and radiologist would give you the information you are looking for in a neutral setting? It sounds as though you are frustrated right now but have been with your doctor for a while. I'm new enough that I am not sure if each hospital has their own set up, or if a care team meeting would be a normal part of the process? I am still meeting all of mine to get treatment started but I believe I will ask if this would be possible if I had concern or an issue like this.
Vicky

Jump to this post

@vsinn2000 That is good news, Vicky. Is your next appointment or treatment coming up soon?

Teresa

REPLY
vsinn2000 | @vsinn2000 | Dec 3, 2017
In reply to @saltis "Hi friends, Everybody tells me that I look fablous & not at all sick. Nobody ever..." + (show)
@saltis

Hi friends,
Everybody tells me that I look fablous & not at all sick. Nobody ever told me that I look fab when it was important & I wasn't sick. 22 years of cancer & now for the last 3 years stage 4 & it has spread to my chest, too. Hopefully I would start my new treatment on Tuesday and by then I hope to be able to breath as before, normally. My new chemo is based on pills Capecitabin, 8 ones everyday in two weeks time & then a rest week & then I would continue two other weeks.
Sometimes I feel that my oncolog is a bit intimated by me and blurbs out words or phrases that are not so diplomatic but he is a human being and my fablousness puts him in disadvantage, lol! Like while treating my lung problem I started to notice that my right breast which was operated and a fourth of it was taken away is losing it's form and now is stuck like a clump on my chest and is a very little thing. Anyway he has never seen anything like it and then he tells me that I have lived quite a long time with my cancers and must expect organ failures in future. I asked him is there anything I can do?
He told me No, just don't expect too much! You mean no biggest lottery Prize? Between us I still feel that I am lucky and I have my family & friends around me. When I can breath I feel lucky & everything would work out for the best somehow.
Take care folk and enjoy your day, night ...

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Good for you! I mentally enjoy the image of you setting your oncologist back on his heels! I don't condone disrespect, in either direction. Dignity is our right, compassion and professionalism is their obligation.
Stay awesome!
Vicky

REPLY
vsinn2000 | @vsinn2000 | Dec 3, 2017
In reply to @vsinn2000 "Allison, I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment..." + (show)
@vsinn2000

Allison,
I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment with both doctor and radiologist would give you the information you are looking for in a neutral setting? It sounds as though you are frustrated right now but have been with your doctor for a while. I'm new enough that I am not sure if each hospital has their own set up, or if a care team meeting would be a normal part of the process? I am still meeting all of mine to get treatment started but I believe I will ask if this would be possible if I had concern or an issue like this.
Vicky

Jump to this post

I'm still feeling my way through this. I learned an important lesson very early though. Trust your doctor. The decisions are hard enough without having to second guess every single thing you've been told. I thank God every day that I found you all here at mayo connect and for my care team. The support from every single person I have connected with, the honesty from my team, the willingness to work with me on my issues - priceless for myself and my husband.
Vicky

REPLY
saltis | @saltis | Dec 3, 2017
In reply to @allisonsnow "Just had my mid-way scans for my chemo and am trying to figure out what is..." + (show)
@allisonsnow

Just had my mid-way scans for my chemo and am trying to figure out what is going on. Was told if we saw no improvement they would not suggest the continuation of the gemzar and xeloda. What the scans showed was no shrinkage and many areas had some growth BUT Dr. said to continue chemo treatments. I have to take what he said as truth as he showed me only one scan and sped through the discussion. I was still in some shock and a lot of disappointment to take in all he said. He showed the most enthusiasim when I said I would take part in a study.
When I asked what the next step would be if we still saw no improvement and he said try a different chemo regiment though he didn't know what. I am not a guinea pig for random drugs with no track record !!! I have made it clear I chose quality of life overall. The Dr. seemed to think I was handling side effects very easily which is not the case it just looks that way. I constantly hear how good I look which is nice but people then take for granted I feel good which is far from the truth some of the side effects are quite nasty and I am afraid how long they will take to go away. I present myself well when I do go out and I just don't go put when I can't appear healthy.But anyway the Dr. didn't seem to want to pursue the severity of my side effects and as I said I was in a bit of shock and surprise. Sorry I am not usually so whinny but I am still deciding what to do. Thanks for listening

for those that don't know me ( I haven't been on in a while) I have metsastic Thymoma

Jump to this post

Hi dear Allison,
Nobody wants to be a Guinea pig not even a Guinea pig himself when it is about trial & experimental medicine. Last year one of my oncologists wanted to put me in such a program with experimental chemo treatment. I am a very positive person, so I was really happy. I went home & took a piece of paper and wrote down the positive aspects, then I tried to find out more about the medicin, if it has been tried on human beings, what reasults & so on, then I wrote down my worries... for the next two days I went back to the paper & added or omitted some points. I called the oncology & I met my good doctor. I was prepared & asked my questions, wrote down his answers or lack of information. He was really surprised but I thanked him, went by my contact nurse & told him that I wished to change my doctor immediately. She asked me why and I told her that my Oncologist was not prepared, he hadn't read my cancer history, the different chemo treatments and the results. That he wanted to put me on an experimental treatment without all the facts& that is why I didn't trust him. She without any hesitation came forward with a list of oncologists working and told me a little about their speciality. I chose a new one & the first thing he did was to take me away from the list. According to him there were at least, three new chemo treatments that I didn't tried yet. I tried one last year until recently and hopefully would try the pills variation from Tuesday.
What I mean is that write down your worries, facts or lack of facts, do research and then say yes or no. Don't let bad bed manners of a doctor persuads you to make a choice based on your feelings. That luxury, we don't have, sorry. I am right here on the same planet, little longer away but with the same hope and dreams, to survive once more, have fun on Xmas day with the young & beloved ones. Lots of hugs,

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