Health Issues Cancer
- Thread starter Kasandra
- Start date
GingerFoxx
No effin' whey!
Finally some updates on my end with regard to my fiance, unfortunately they are not favorable ones. The GI specialist he saw last year turned up nothing in his search for gastronomas. They basically told him they would repeat the tests after a while to see if anything was more evident, figuring that whatever it is must be small and slow growing to be so elusive. His cousin, who is a physician's assistant, offered to review his medical record and give her insight. Upon doing so, she strongly suspects a carcinoid tumor. Carcinoids are typically found in the GI tract or the lungs. They are typically small (sometimes only a few cells) and they emit hormones that cause you to present symptoms that are a lot like different types of GI disorders, thus sending doctors down the wrong path in their search. Because they are so small, it's like the medical equivalent of finding a needle in a haystack. Average diagnosis time, due to all the misleading symptoms is on average about nine YEARS. We're already four years into our search for the origins of his illness...
Anyway, his cousin knows a surgeon at the cancer institute near us in Boston, but my fiance cannot get an appointment there without a positive cancer diagnosis. So that doctor referred him to the head of GI at another hospital north of us. They will send him the notes and their suspicions with regard to the carcinoid, and hopefully they will be on the path to diagnosis.
I am so scared right now. The less aggressive types of carcinoid have a high survival rate. The more aggressive ones do not. He just graduated a month and a half ago and just started a proper job in his field. Now, he is afraid of losing all that, because his physical state is on such a decline. He can't walk across a parking lot without being winded, and he can't sleep comfortably anymore, not to mention the constant abdominal discomfort. He told me yesterday that he is having issues drawing a deep breath. We have postponed marriage indefinitely, to protect my finances, and our life together is effectively on hold. We need answers, and fast...
Anyway, his cousin knows a surgeon at the cancer institute near us in Boston, but my fiance cannot get an appointment there without a positive cancer diagnosis. So that doctor referred him to the head of GI at another hospital north of us. They will send him the notes and their suspicions with regard to the carcinoid, and hopefully they will be on the path to diagnosis.
I am so scared right now. The less aggressive types of carcinoid have a high survival rate. The more aggressive ones do not. He just graduated a month and a half ago and just started a proper job in his field. Now, he is afraid of losing all that, because his physical state is on such a decline. He can't walk across a parking lot without being winded, and he can't sleep comfortably anymore, not to mention the constant abdominal discomfort. He told me yesterday that he is having issues drawing a deep breath. We have postponed marriage indefinitely, to protect my finances, and our life together is effectively on hold. We need answers, and fast...
Sorry to hear that, Ginger. That must be such a difficult situation. I hope you get answers, good answers, and soon. Fingers crossed.
I'm so sorry GF and hope that you'll be able to get some positive news once he has seen the specialist.
GingerFoxx
No effin' whey!
Thank you all. This is such a difficult time, knowing that the entire future we have planned hinges on the answers we may find and the course that lays out. I am trying to stay strong, but it's hard when there is nothing I can do to fix the situation. We are at the mercy of oh so many doctors who've been looking in the wrong place for a long time. Some days, I just cry.
OP
OP
Hello Everyone, its been forever, but the journey has been bitter sweet, I feel very angry that I did not educate myself more about cancer from the beginning. Once the medical aid was cleared, even thou they knew my dads cancer is far progressed suggested, the strongest chemo (6 sessions) afterward radiation 6 rounds, then bone injections... To me it seems it just destroyed him faster and never was he given the choice to avoid treatment and look for alternative options. Maybe this is just my ignorance talking.... I know my dad is in a lot of pain... His at home still fighting but this is the worst part... Seeing him on morphine patches not able to do anything just melting away infront of our eyes. My mom refusing to get nurses in to help as she knows how he feels about it...
I am there every weekend... Emotionally bitter sweet, being able to spent some time... but feeling so drained and emotional ... afterwards... Horrible to see my dad like that and my mom... just trying to cope....
I am there every weekend... Emotionally bitter sweet, being able to spent some time... but feeling so drained and emotional ... afterwards... Horrible to see my dad like that and my mom... just trying to cope....
Ann Chovie
Ploughing my own furrow
- Joined
- Apr 4, 2013
- Reaction score
- 417
[QUOTE="Kasandra, post: 195577,]
, I feel very angry that I did not educate myself more about cancer from the beginning. Once the medical aid was cleared, even thou they knew my dads cancer is far progressed suggested, the strongest chemo (6 sessions) afterward radiation 6 rounds, then bone injections... To me it seems it just destroyed him faster and never was he given the choice to avoid treatment and look for alternative options. Maybe this is just my ignorance talking.... I know my dad is in a lot of pain... His at home still fighting but this is the worst part... Seeing him on morphine patches not able to do anything just melting away infront of our eyes. ....[/QUOTE]
I feel for you so much, your post made me cry.
I remember so well those last weekends watching someone falling away and not having any thing practical to do but pump up pillows or fetch tablets. It is gut wrenching and only experiencing it can we know the horror.
It is such a tough call .. Do
We follow the Chemo route knowing there is a glimpse of recovery ,a chance to hang on to someone we cannot bear to be without ? Or do we reject this option look for others?
We receive a diagnosis and are caught up in a whirlwind of words and treatments we do not understand propelled along by shock and terror. We take this route because we know no other so we have no confidence to reject it.
And somewhere along the way we have chosen to give away quality of life in search of extension of life without even realising we have done so. We all..
Patient and family will endure the unspeakable for a gamble of other year or even another month.
And the patient spends their last months beaten and exhausted with no quality of life at all.
But what alternative? Some of my patients chose to reject treatment at all taking six months of quality as opposed to eighteen months of what ifs. But it is a tough decision which their family rarely agrees with. Often families will confide that they wished the patient would stop fighting give in and live for their limited time but they are afraid to say. It is a common dilemma even for the very informed.
No one knows the right thing. But whichever they choose someone will blame themselves for doing it wrong. Just as you are. Just as I did.
You are a good daughter and your dad is lucky to have you all around him. His cancer was already advanced there were probably no other options . Please do not waste this valuable time left with turmoil and regret. Make quality life where chances still exist . Do not beat yourself up . You are just caught up in a room with no doors. You did not miss them they are just not there.
Always here for you
, I feel very angry that I did not educate myself more about cancer from the beginning. Once the medical aid was cleared, even thou they knew my dads cancer is far progressed suggested, the strongest chemo (6 sessions) afterward radiation 6 rounds, then bone injections... To me it seems it just destroyed him faster and never was he given the choice to avoid treatment and look for alternative options. Maybe this is just my ignorance talking.... I know my dad is in a lot of pain... His at home still fighting but this is the worst part... Seeing him on morphine patches not able to do anything just melting away infront of our eyes. ....[/QUOTE]
I feel for you so much, your post made me cry.
I remember so well those last weekends watching someone falling away and not having any thing practical to do but pump up pillows or fetch tablets. It is gut wrenching and only experiencing it can we know the horror.
It is such a tough call .. Do
We follow the Chemo route knowing there is a glimpse of recovery ,a chance to hang on to someone we cannot bear to be without ? Or do we reject this option look for others?
We receive a diagnosis and are caught up in a whirlwind of words and treatments we do not understand propelled along by shock and terror. We take this route because we know no other so we have no confidence to reject it.
And somewhere along the way we have chosen to give away quality of life in search of extension of life without even realising we have done so. We all..
Patient and family will endure the unspeakable for a gamble of other year or even another month.
And the patient spends their last months beaten and exhausted with no quality of life at all.
But what alternative? Some of my patients chose to reject treatment at all taking six months of quality as opposed to eighteen months of what ifs. But it is a tough decision which their family rarely agrees with. Often families will confide that they wished the patient would stop fighting give in and live for their limited time but they are afraid to say. It is a common dilemma even for the very informed.
No one knows the right thing. But whichever they choose someone will blame themselves for doing it wrong. Just as you are. Just as I did.
You are a good daughter and your dad is lucky to have you all around him. His cancer was already advanced there were probably no other options . Please do not waste this valuable time left with turmoil and regret. Make quality life where chances still exist . Do not beat yourself up . You are just caught up in a room with no doors. You did not miss them they are just not there.
Always here for you
GingerFoxx
No effin' whey!
We may be making some progress on my end. My fiance went to Massachusetts General Hospital today, which I am told has some of the best doctors around. He saw their neuroendocrine tumor specialist, who scheduled him for an MRI, PET scan and CT scan. He has had all those tests before, about a year ago, but maybe this time with a new doctor they will see something different. They also ordered some repeat lab work to check for certain tumor specific proteins that might give the search some direction.
The tests will take place this Friday morning, and the lab work will be done on Tuesday, when he goes down there for a follow up. I am grateful that we are only an hour or so from Boston. This would be a lot harder if we were somewhere very rural where the nearest quality doctors were hours away. Good vibes requested. He's been deteriorating and it's very difficult to watch.
The tests will take place this Friday morning, and the lab work will be done on Tuesday, when he goes down there for a follow up. I am grateful that we are only an hour or so from Boston. This would be a lot harder if we were somewhere very rural where the nearest quality doctors were hours away. Good vibes requested. He's been deteriorating and it's very difficult to watch.
Ann Chovie
Ploughing my own furrow
- Joined
- Apr 4, 2013
- Reaction score
- 417
GF
My thoughts and wishes are with you and everything crossed wishing you good news
My thoughts and wishes are with you and everything crossed wishing you good news
Sending good thoughts to both Kasandra and GingerFoxx. ((((Hugs))))
OP
OP
Thanks everyone, at the moment I am more worried about my mom's state of mind, she is determined to do everything herself for my dad, as she does not want to make him feel ashamed or him lose his self respect etc. But she is not coping at the moment. She needs help... Or worst fear is that my dad will fall and break a bone. I am phoning her again a little later to discuss with her... I live 40 minutes away from my parents feels horrible that I can't just help more. She still does every thing for him... helping him to bathroom, shower, he can barely walk.... She hardly sleeps cause she is so worried about him.
ANN CHOVIE.. its never easy... i even got the cannabis oil and wanted to him to try it.... but now its too late...its true what you say.... i will not let the anger or frustration of the could have's destroy me. His cancer was far progressed to begin with.... I guess I am just frustrated that they never gave my parents the option not too do chemo.... ect.
I am praying for relief... for my dad, my mom, my brother and myself... It will be hard and one is never prepared but the suffer must end now... for all of us...
ANN CHOVIE.. its never easy... i even got the cannabis oil and wanted to him to try it.... but now its too late...its true what you say.... i will not let the anger or frustration of the could have's destroy me. His cancer was far progressed to begin with.... I guess I am just frustrated that they never gave my parents the option not too do chemo.... ect.
I am praying for relief... for my dad, my mom, my brother and myself... It will be hard and one is never prepared but the suffer must end now... for all of us...
ledboots
Peace
Kasandra, your parents would both be much more comfortable if your dad accepted hospice. They are the best at controlling pain and at care for the very ill. Maybe when your dad is having a good moment, you could bring it up to him. You could go about it by telling him that you think your mom needs the help.
"Hospice looks at all the patient’s and family’s needs. A coordinated team of hospice professionals, assisted by volunteers, works to meet the patient’s and family’s emotional and spiritual needs, as well as the patient’s physical needs.
The emphasis is on controlling pain and symptoms through the most advanced techniques available and on emotional and spiritual support tailored to the needs of the patient and family.
Hospice recognizes that a serious illness affects the entire family as well as the person who is ill. The family, not just the patient, is the "unit of care" for hospice professionals. Sometimes other family members actually need more attention than the patient."
HOSPICE FREQUENTLY ASKED QUESTIONS AND ANSWERS
"Hospice looks at all the patient’s and family’s needs. A coordinated team of hospice professionals, assisted by volunteers, works to meet the patient’s and family’s emotional and spiritual needs, as well as the patient’s physical needs.
The emphasis is on controlling pain and symptoms through the most advanced techniques available and on emotional and spiritual support tailored to the needs of the patient and family.
Hospice recognizes that a serious illness affects the entire family as well as the person who is ill. The family, not just the patient, is the "unit of care" for hospice professionals. Sometimes other family members actually need more attention than the patient."
HOSPICE FREQUENTLY ASKED QUESTIONS AND ANSWERS
OP
OP
I wish he would ledboots but he will never go to Hospice... He just want my mother to look after him and be around us when we visit... Its really tough esp on my mother but I did inform her to get a nurse in now.... stubborn to the very end
