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Cancer update
I met with the Cancer Doctor at Duke and it was not pretty. Basically my CT Scan was pretty clear. There is something new on the liver but it is too early to tell so I am not worrying about it. It may be the clear cell cancer which usually is hard to see this early on. We discussed my case. Basically my Ovarian Cancer is very bad and it will for sure go to stage 4 and probably kill me, no ones knows when. He did not come out is say this. He wants me to be more aggressive in treatment. He wants me to be in a research study where I do my same chemo course again right away. He says it will not prolong my life just push back when the Ovarian Cancer returns. So basically I spend a year and half really sick to gain that time not having cancer? That makes no sense to me.
My chances of breast cancer are even higher than Ovarian and he wants me to see a breast doctor right away and have my breasts removed. I said I am not interested in breast cancer, especially not now. I know all my risks and options and none are good. I also am not interested in close survaliance. That would make me a nervous wreck looking for ovarian and breast cancer.
I do not get MRIs for my MS because I do not want to see the progression. I know its happening I do not need to have it pointed out.
He told me "You have your head in the sand and are not being realistic. I said "No I am not ignorant of my risks and options, I have studied them in great detail". The bottom line is it is my life.
My husband and said what is most important now is to get my weight back up. The rest is a moot point if I am this thin.
Then he brought up UNC, he has been talking to the Doctors over there. They are afraid I might sue them, which I won't. He wants to save his buddy, my old doctor's butt. He explained I am in the wrong. He gave me a lecture on being disrespectful to Doctors and how I have to change if I expand my cancer treatment. I told him would be happy to never see an oncologist again as long I live.
We were shouting at each other. I told him I have been through so much, and I have no wish to be taken a part piece by piece, cause myself more pain, nor subject myself to chemo for months on end. I said I watched my father spend 14 years with no quality of life in this way.
My husband, my friends and my other health professionals all know I have looked at all sides of this and support my decision. I may do chemo again at some point just not now when I am so sick. If I was not going to go to stage IV cancer I might worry about the breast cancer, which there is no evidence of yet, just the BRCA 1 mutation giving me an 85% and an 80% of a reoccurance in two years.
The Cancer doctors do not think about the MS as part of the equation. I know what I can endure. I have a good life but I do not fear death. I fear a life like the last six months repeated until I die.
The Doctor wants a patient who will blindly do what I am told no matter how much pain and illness it causes me. Also do it in a happy optimistic manner. That works well for most of the patients I see, but not me.
I explained I am leaning toward pallative care, treating symptoms to fighting the cancer. I explained I am about quality of life not quantity. I will probably die of cancer and I am not going to add to my pain and misery. I am going to take my life back and live whats left of it on my terms.
We left it with me spending the next three months not thinking about cancer and building my strength back. He wants me to see the breast doctor after that. I will and listen, but I doubt she is going to change my mind. Last week I discussed all this with my GP. She says my case is so complicated and no doctor can tell me the right thing to do. It comes down to choices that may slow cancer but not stop it. None of the choices are good.
Like with MS we have to be well informed and make decisions that are right for us. It is funny how uncomfortable you make patients and Doctors at a cancer hospital when you accept death as part of the bargain. I intend to be around awhile. I am going to live my life on my terms. I guess when people are scared it is easier to have a Doctor think for you. Unfortunately these doctors sometimes forget about life in the process of cheating death. It is like they forget about me as a human being instead of a set of diagnoses. My cancer care has been devoid of compassion, understanding, or common sense.
At least I have other doctors who give me all three. They care about my symptoms and feelings.
To Life,
Alex
My chances of breast cancer are even higher than Ovarian and he wants me to see a breast doctor right away and have my breasts removed. I said I am not interested in breast cancer, especially not now. I know all my risks and options and none are good. I also am not interested in close survaliance. That would make me a nervous wreck looking for ovarian and breast cancer.
I do not get MRIs for my MS because I do not want to see the progression. I know its happening I do not need to have it pointed out.
He told me "You have your head in the sand and are not being realistic. I said "No I am not ignorant of my risks and options, I have studied them in great detail". The bottom line is it is my life.
My husband and said what is most important now is to get my weight back up. The rest is a moot point if I am this thin.
Then he brought up UNC, he has been talking to the Doctors over there. They are afraid I might sue them, which I won't. He wants to save his buddy, my old doctor's butt. He explained I am in the wrong. He gave me a lecture on being disrespectful to Doctors and how I have to change if I expand my cancer treatment. I told him would be happy to never see an oncologist again as long I live.
We were shouting at each other. I told him I have been through so much, and I have no wish to be taken a part piece by piece, cause myself more pain, nor subject myself to chemo for months on end. I said I watched my father spend 14 years with no quality of life in this way.
My husband, my friends and my other health professionals all know I have looked at all sides of this and support my decision. I may do chemo again at some point just not now when I am so sick. If I was not going to go to stage IV cancer I might worry about the breast cancer, which there is no evidence of yet, just the BRCA 1 mutation giving me an 85% and an 80% of a reoccurance in two years.
The Cancer doctors do not think about the MS as part of the equation. I know what I can endure. I have a good life but I do not fear death. I fear a life like the last six months repeated until I die.
The Doctor wants a patient who will blindly do what I am told no matter how much pain and illness it causes me. Also do it in a happy optimistic manner. That works well for most of the patients I see, but not me.
I explained I am leaning toward pallative care, treating symptoms to fighting the cancer. I explained I am about quality of life not quantity. I will probably die of cancer and I am not going to add to my pain and misery. I am going to take my life back and live whats left of it on my terms.
We left it with me spending the next three months not thinking about cancer and building my strength back. He wants me to see the breast doctor after that. I will and listen, but I doubt she is going to change my mind. Last week I discussed all this with my GP. She says my case is so complicated and no doctor can tell me the right thing to do. It comes down to choices that may slow cancer but not stop it. None of the choices are good.
Like with MS we have to be well informed and make decisions that are right for us. It is funny how uncomfortable you make patients and Doctors at a cancer hospital when you accept death as part of the bargain. I intend to be around awhile. I am going to live my life on my terms. I guess when people are scared it is easier to have a Doctor think for you. Unfortunately these doctors sometimes forget about life in the process of cheating death. It is like they forget about me as a human being instead of a set of diagnoses. My cancer care has been devoid of compassion, understanding, or common sense.
At least I have other doctors who give me all three. They care about my symptoms and feelings.
To Life,
Alex
Oh Alex, my heart goes out to you, and I so understand your decisions. Pallitative care is a good choice, it will at least keep you as comfortable as can be, and you can enjoy the rest of your days.
I have had 2 friends do that, and they say, that when they are able to function, to cook, and visit people, and just be..... it is so much better, than the alternative of more and more treatments.
I have a good friend who is like you in here fight, she is debating and making her decision by December, and they will decide if she goes to pallitive care, or more chemo.... she was tne care ......... I hope she will get that.
When you come to terms with what you have been able to do, so much of the decisions are already made. That must be of some relief.
I wish nothing but for you to make the best decision for YOU.... and how you choose to do this.
God bless you, and gently hugs too,
Candy
I have had 2 friends do that, and they say, that when they are able to function, to cook, and visit people, and just be..... it is so much better, than the alternative of more and more treatments.
I have a good friend who is like you in here fight, she is debating and making her decision by December, and they will decide if she goes to pallitive care, or more chemo.... she was tne care ......... I hope she will get that.
When you come to terms with what you have been able to do, so much of the decisions are already made. That must be of some relief.
I wish nothing but for you to make the best decision for YOU.... and how you choose to do this.
God bless you, and gently hugs too,
Candy
I have not been on the forum for a long time, mainly because I do not want a constant reminder of my MS. Before you were unlucky enough to get cancer, I admired your strength of character and recognised someone who will never be a victim. Though all the adversities that you have endured since childhood, you have never lost your fighting spirit with whatever you have faced. I have always felt that you are not someone who seeks sympathy, although you recognise and appreciate other's empathy. So I just want to say, good on you girl for retaining your choice and independence about your treatment. it is your life and I hope that the doctors respect your decisions. Thank you so much for updating us all about how things are...I have to say that this was my main reason for checking in as I thought of you suddenly and wondered how you were.
With love and hugs from England
Sarah xxxxxx
With love and hugs from England
Sarah xxxxxx
The thing in cancer treatment now seems to be "maintenence" which is lower dose chemo taken to prevent a relapse, that is given after the more agressive chemo regime is finished. I could be taking chemo pills everyday for the rest of my life after my stem cell transplant but decided I wanted a break from drugs to see if my body can maintain remission on its own. so far I am 2 years out and doing well.
Alex I am so sorry you have such poor experiences with the oncology doctors. I agree that patients should guide the decisions on what treatment is best for them and doctors should leave that decision to the pateint and not judge them! You are very strong, and I support you! You GP sounds wonderful. Maybe because I am in Canada, but here it is difficult to sue a Doctor, so manybe dr.'s do not have this fear and are freer to give their real opinion? I don't know, but I think it has an influence.
Alex I am so sorry you have such poor experiences with the oncology doctors. I agree that patients should guide the decisions on what treatment is best for them and doctors should leave that decision to the pateint and not judge them! You are very strong, and I support you! You GP sounds wonderful. Maybe because I am in Canada, but here it is difficult to sue a Doctor, so manybe dr.'s do not have this fear and are freer to give their real opinion? I don't know, but I think it has an influence.
I can't say anything, because I've never been there, but I think you've made a wise decision. The most important thing right now is your comfort and happiness.
It seems like almost all of oncology is chemo treatments to keep the patient alive. As long as the patient is willing to put up with it, they'll keep treating the cancer. I had a good friend pass away just recently with non-Hodgkin's lymphoma. He had been in the hospital, and they had tried various things, but nothing had worked, and he knew that the doctors would just drain him of his savings, and all to prolong a life that he knew would end soon. He checked himself out of the hospital and went home, took care of his affairs, and passed away a week later.
I have another coworker with cancer, who's currently receiving chemo and working full time. The cancer doesn't advance, but it doesn't retreat, either. She doesn't see an end to this - she and the doctor thinks she'll be taking chemo until she dies.
It seems like almost all of oncology is chemo treatments to keep the patient alive. As long as the patient is willing to put up with it, they'll keep treating the cancer. I had a good friend pass away just recently with non-Hodgkin's lymphoma. He had been in the hospital, and they had tried various things, but nothing had worked, and he knew that the doctors would just drain him of his savings, and all to prolong a life that he knew would end soon. He checked himself out of the hospital and went home, took care of his affairs, and passed away a week later.
I have another coworker with cancer, who's currently receiving chemo and working full time. The cancer doesn't advance, but it doesn't retreat, either. She doesn't see an end to this - she and the doctor thinks she'll be taking chemo until she dies.
Alex,
I admire you tennasity. My mother died of breast cancer at 55. After the second round of chemo, she embraced the quality and not quantity. I am thnkful for the time that I got to spend with her when she was not sick from chemo. You are a brave woman!
What is important is that you surround yourself with those who truly love you and make a desicion that you accept. I wish that there was a cure for your cancer. That horrible disease has stollen too many people. But you are correct, there is an appointed time for all of us and there is no point in feering it. Be strong and of good cheer. You are loved and you are important!
Ann
I admire you tennasity. My mother died of breast cancer at 55. After the second round of chemo, she embraced the quality and not quantity. I am thnkful for the time that I got to spend with her when she was not sick from chemo. You are a brave woman!
What is important is that you surround yourself with those who truly love you and make a desicion that you accept. I wish that there was a cure for your cancer. That horrible disease has stollen too many people. But you are correct, there is an appointed time for all of us and there is no point in feering it. Be strong and of good cheer. You are loved and you are important!
Ann
Oh, Alex. You have been thru so much. I wish this never happened - the cancer and everything. I can definitely understand your feelings right now of not wanting to jump into another round of chemo, especially if it's not really going to prolong your life.
As I had mentioned before my dad had last stage lung cancer that we found out afterwards was everywhere - in his brain, bones, abdomen, etc. He took chemo and died only after 2 1/2 months of being diagnosed. He had only a 3% chance of survival. Those 2 1/2 months were the worst of his life (and ours). It aged him where he looked like a 80 yr old man and he was only 55 yrs old. He was soooo sick. We wish now, that he would have chosen to forego the chemo, and instead have a good quality of life. He had been working and looking very healthy before he started the chemo and then straight down hill after he started.
You know we all love you and wish only the best for you - many hugs,
Kelly
As I had mentioned before my dad had last stage lung cancer that we found out afterwards was everywhere - in his brain, bones, abdomen, etc. He took chemo and died only after 2 1/2 months of being diagnosed. He had only a 3% chance of survival. Those 2 1/2 months were the worst of his life (and ours). It aged him where he looked like a 80 yr old man and he was only 55 yrs old. He was soooo sick. We wish now, that he would have chosen to forego the chemo, and instead have a good quality of life. He had been working and looking very healthy before he started the chemo and then straight down hill after he started.
You know we all love you and wish only the best for you - many hugs,
Kelly
Thanks for sending the update.
I am apauled with this docs motive to save his buddy from a law suit rather than your care
Your strength to argue is a great example and to do what is best for you. Can't help but think of eat pray love movie and in your case ride your horse
Many hugs
to you and your family
Kirsten
I am apauled with this docs motive to save his buddy from a law suit rather than your care
Your strength to argue is a great example and to do what is best for you. Can't help but think of eat pray love movie and in your case ride your horse
Many hugs
to you and your family
Kirsten
COMMUNITY LEADER
Dear Alex,
There is no doubt this was hard to read, raw ugly truth no matter how its delivered is the reality you are facing. Your straight up honesty in the telling of your life story is always humbling and i'm sure there is no one in our community reading your truth, that isn't going to feel gutted by this latest chapter but will also be in awe of your continual disclosure of incredible inner strength!
Hugs to you and yours............JJ
There is no doubt this was hard to read, raw ugly truth no matter how its delivered is the reality you are facing. Your straight up honesty in the telling of your life story is always humbling and i'm sure there is no one in our community reading your truth, that isn't going to feel gutted by this latest chapter but will also be in awe of your continual disclosure of incredible inner strength!
Hugs to you and yours............JJ
Dear Alex, my eyes are filled with tears as I read this. What a woman you are, so strong, honest and just in every way SO one of a kind. Trust your instinct because you have a great one. And when you make a decision like this, I know that you have thought of every option so carefully.
I like that you´re going to get some weight on, so you can built up some strength for months ahead. I´m thinking of you and admiring from a far, but yet it feels up close, my friend over the internet. I´m in loss of English words but my best to you always.
Hugs,
Dagun
I like that you´re going to get some weight on, so you can built up some strength for months ahead. I´m thinking of you and admiring from a far, but yet it feels up close, my friend over the internet. I´m in loss of English words but my best to you always.
Hugs,
Dagun
Alex everyone has summed up my feelings well so I just want to tell you I personally think quality of life is preferable to quantity. Bottom line it's your decision!!!! And who knows miracles happen and we never know the end story for sure.
Dear Alex,
I feel like everyone has said, this was VERY difficult to read. I too have never met you in person, yet i feel you in my heart. I have been following your difficult battle for a long time now. Your courage and strength have inspired me. I lost my mom and brother to cancer this year and have been there till their end. I am glad that you and your husband are choosing a way that is giving you the choice for the quality of life which will be more Alex centered than doctor centered.
You are a precious part of our family here. As you have read, we all support and respect you.
My thoughts and prayers are always with you, my friend :)
Gentle hugs,
Deb
I feel like everyone has said, this was VERY difficult to read. I too have never met you in person, yet i feel you in my heart. I have been following your difficult battle for a long time now. Your courage and strength have inspired me. I lost my mom and brother to cancer this year and have been there till their end. I am glad that you and your husband are choosing a way that is giving you the choice for the quality of life which will be more Alex centered than doctor centered.
You are a precious part of our family here. As you have read, we all support and respect you.
My thoughts and prayers are always with you, my friend :)
Gentle hugs,
Deb
Like Es, this is horrible to read. However, the decision is yours and yours alone. It's not like you're an uninformed patient.
You are so smart, brave, resislent, and I 100% respect your decision. Quality of life is so important, especially since yours hasn't been so quality in a long time. If what's going to make you happy and able to live your life doing the things you love means no treatment, then so be it. Like you said, you can always start chemo again later on.
I barely know you, but yet have so much admiration and love for you. I'm pretty sure I can say that about 99% of this forum!
Hugs,
Laura
You are so smart, brave, resislent, and I 100% respect your decision. Quality of life is so important, especially since yours hasn't been so quality in a long time. If what's going to make you happy and able to live your life doing the things you love means no treatment, then so be it. Like you said, you can always start chemo again later on.
I barely know you, but yet have so much admiration and love for you. I'm pretty sure I can say that about 99% of this forum!
Hugs,
Laura
Alex,
You do what you and your hubby think is best for you. You know which to choose so that you have the best quality of life at that. God is with you always and you have the prayers and encouragement of friends and family and those here on this forum. But ultimately the Lord will give the strength for however long.
Hang in there. You have been fighting this for long time.MS CANCER etc.No one knows unless they have walked in your shoes.
May the Lord bless you and continue to give you the strength in the way you need it the most.
Hugs and blessings,
Tammy:)
Ps I just lost my mother Oct 18th and I'mjust glad she is no longer suffering and the Lord has her PAIN FREE!
You do what you and your hubby think is best for you. You know which to choose so that you have the best quality of life at that. God is with you always and you have the prayers and encouragement of friends and family and those here on this forum. But ultimately the Lord will give the strength for however long.
Hang in there. You have been fighting this for long time.MS CANCER etc.No one knows unless they have walked in your shoes.
May the Lord bless you and continue to give you the strength in the way you need it the most.
Hugs and blessings,
Tammy:)
Ps I just lost my mother Oct 18th and I'mjust glad she is no longer suffering and the Lord has her PAIN FREE!
Dear Alex...I was not aware of the h*ll you have been going through and I am so sorry honey. As if Ms wasn't enough to kick you when you are down, I can't imagine the painful decisions you have been having to make as to your own life and how you want to live it. I admire your bravery honey...don't know that I personally could do it but you are in control of your own destiny...no one else...just you!
I wish you all the best with your decision. My sis in law is currently dealing with chemo and thankfully she has been tolerating it fairly well. I am so sorry that you are one of the many that have to deal with being sick all the time.
You are your own person and you are the one to decide with the help of your family...Again, I am so sorry to see what you have been through.
Lots of Hugs,
Rena
Dear Alex,
Audrey and Ess have pretty much summed up my feelings as well. It's YOUR life and the quality is so much more importnat than the quantity.
It is true , doctors are afraind of losing patients as they take it as a personal defeat.
My Dad finally said no more chemo or raditiation to metastic prostate cancer than was in every bone of his body. He slowly regained strength and was bowling up to 10 days before his death. he died content and peaceful.
It's all a personal decision and I know you well enough to know that you know more about your condition than the doctors. Make your choices wisely and live the life "you" want. My only suggestion is a feeding tube to improve your strength faster. MY dad did so for about 3 weeks and it made a big difference. still your choice..just a suggestion!
Hang in there and know your are in my thougths daily!
Gentle hugs!
Ren
Audrey and Ess have pretty much summed up my feelings as well. It's YOUR life and the quality is so much more importnat than the quantity.
It is true , doctors are afraind of losing patients as they take it as a personal defeat.
My Dad finally said no more chemo or raditiation to metastic prostate cancer than was in every bone of his body. He slowly regained strength and was bowling up to 10 days before his death. he died content and peaceful.
It's all a personal decision and I know you well enough to know that you know more about your condition than the doctors. Make your choices wisely and live the life "you" want. My only suggestion is a feeding tube to improve your strength faster. MY dad did so for about 3 weeks and it made a big difference. still your choice..just a suggestion!
Hang in there and know your are in my thougths daily!
Gentle hugs!
Ren
This is horrible to read, and I'm just reading it, not living it.
I guess all of us have thoughts on how we'd react to such news and such advice, what we'd do and so on, but that's strictly hypothetical. What we'd decide when actually faced with it is a big unknown.
At least in the abstract, I'm for quality of life over quantity, especially after drastic surgery and other treatments have caused terrible suffering. So I hear you loud and clear. I know you have researched things carefully, and have lived through too much to let the medical world treat you like a collection of body parts instead of as the thinking, feeling, living person you are.
Alex, you are one of the strongest people out there. I trust you implicitly to make the best decisions for *you*. No one wants to see your life cut short, so many may urge you without knowing what they're talking about, to endure what you don't want to endure. It's especially galling when it's the medical world doing that. I wonder what this doctor would do if it were a member of his family facing what you are now.
I once wrote you about my cousin, who had a very similar situation involving ovarian cancer, and was given a 2 to 7% chance of survival. That was 30 years and 4 Master's degrees ago, and she's now thriving as vice president of a hospital. So doctors don't know everything, even if they act as if they do. She is a big proponent of hope as a coping technique, and has been spreading that gospel all these years since.
My thoughts are always with you, my friend. I wish you the very best, and send as many understanding hugs as can go across cyber space. Continue to take care of yourself, eat as much as you can, and get back your reserves. You are far from done.
ess
I guess all of us have thoughts on how we'd react to such news and such advice, what we'd do and so on, but that's strictly hypothetical. What we'd decide when actually faced with it is a big unknown.
At least in the abstract, I'm for quality of life over quantity, especially after drastic surgery and other treatments have caused terrible suffering. So I hear you loud and clear. I know you have researched things carefully, and have lived through too much to let the medical world treat you like a collection of body parts instead of as the thinking, feeling, living person you are.
Alex, you are one of the strongest people out there. I trust you implicitly to make the best decisions for *you*. No one wants to see your life cut short, so many may urge you without knowing what they're talking about, to endure what you don't want to endure. It's especially galling when it's the medical world doing that. I wonder what this doctor would do if it were a member of his family facing what you are now.
I once wrote you about my cousin, who had a very similar situation involving ovarian cancer, and was given a 2 to 7% chance of survival. That was 30 years and 4 Master's degrees ago, and she's now thriving as vice president of a hospital. So doctors don't know everything, even if they act as if they do. She is a big proponent of hope as a coping technique, and has been spreading that gospel all these years since.
My thoughts are always with you, my friend. I wish you the very best, and send as many understanding hugs as can go across cyber space. Continue to take care of yourself, eat as much as you can, and get back your reserves. You are far from done.
ess
Dear Alex:
The next to last paragraph you wrote sums things up very well.
Our society has a phobia of death and the medical profession is included. Like you, I believe in the quality of life.
I have often wondered in the abstract the decisions I would make with a terminal disease. For you, this is a very real decision making process, not an abstract one. It is also a very personal decision.
At the same time, none of us know when or how we will die. After my brother was killed in a vehicular accident, I know full well that life can be gone in a moment. We all should cherish each moment we have.
I support you in whatever decisions you make. It is your life to live in the way that you deem best for yourself.
Hugs,
Audrey
The next to last paragraph you wrote sums things up very well.
Our society has a phobia of death and the medical profession is included. Like you, I believe in the quality of life.
I have often wondered in the abstract the decisions I would make with a terminal disease. For you, this is a very real decision making process, not an abstract one. It is also a very personal decision.
At the same time, none of us know when or how we will die. After my brother was killed in a vehicular accident, I know full well that life can be gone in a moment. We all should cherish each moment we have.
I support you in whatever decisions you make. It is your life to live in the way that you deem best for yourself.
Hugs,
Audrey
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