Need "somebody whos been there" opinions
Lilsophiemom
Comments
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Mom is 77?
Hey, if Mom is enjoying life, why disrupt her happiness! If I read right, Mom is now 77 and has had her back break in 5 places, broken hip and loads of surgery. Let her enjoy the time she has left!
Diane0 -
No Scans?
Hi Sophie
That sounds highly unusual that no scans of any kind (CT/PET/MRI/Ultrasound) or anything has been ordered during the last 3+ years. Oncologists typically would run follow-up scans after major surgery and treatment - and continue to run them every 6 months or once yearly, or something.
As far as the dye goes, people can have allergic reactions, but one has to try this to see how you would react and go from there...they do run CTs "with" and "without" the contrast, something would be better than nothing. I've never had a problem with it and most of the folks here get scanned with some regularity as part of our treatment and/or follow up plans.
It sounds like you are on the "outside looking in." It's a shame that your Mom won't let you help be an advocate for her and help her with her treatment plan - it would make things so much easier for you both.
As far as the Cancer not being there after so long, I've never been one to assume. It's possible there is no activity, but a CT scan would certainly give you more a warm and fuzzy if you know what I mean.
See if you can get your mom to reconsider her position and do a CT scan - you may need to ask her current doctor why none have ever been ordered for her - did she turn them down? And based on the answers that the doctor gives you and whether you find the information to be the truth, you might still want to consider a 2nd opinion - again just to give you and her a sort of comfort zone on where you are at right now.
Lastly, everyone has the right to determine what they want to do with their fight - Diane makes some good points about what she has been through and her age being 77 - I did not factor that in - we all want to keep life going, but there has to be a quality of life too. Diane makes some good points as she always does
Best of luck with things and keep us posted - and BTW welcome to our forum, there will be others in behind me who will comment as well.
-Craig0 -
Hello, Lilsophiemom,
I
Hello, Lilsophiemom,
I definitely see where
dianne is coming from. Your mom sure has been thru a lot, and why undergo more suffering from treatments that are so difficult to endure. That said, however, if as you say the burden and responsibility of her care falls on you you must make sure that you can legally act as her advocate. In my humble opinion you've got to sit down with your mom and insist that you take care of the legal matters regarding her care. At this point a doctor could refuse to talk to you about your mom and there wouldn't be anything you could do about it.
So far as your mom not having had any follow ups for 3 years that seems awfully unusual to go that long. There's no way of knowing whether or not cancer will return. The only way to know is to be tested.
Carl0 -
I think there's a reasonable
I think there's a reasonable chance she is now cancer free. However, there do seem to be a fair number of people whose cancer does not cause a rise in CEA. You might mention to her that they now can use a contrast agent for CT scans which does not contain iodine (which used to cause some bad reactions).
Are those compression fractures in her spine associated with osteoporosis? My mother had those, and it was very bad news for her. Very painful and eventually immobilizing. Among other treatments, physical therapy and weight-bearing exercises might help. My mother was very active and thought walking and yard work were enough exercise for her, but that proved not to be so.
--Greg0 -
Need "somebody whos been there" opinionsSundanceh said:No Scans?
Hi Sophie
That sounds highly unusual that no scans of any kind (CT/PET/MRI/Ultrasound) or anything has been ordered during the last 3+ years. Oncologists typically would run follow-up scans after major surgery and treatment - and continue to run them every 6 months or once yearly, or something.
As far as the dye goes, people can have allergic reactions, but one has to try this to see how you would react and go from there...they do run CTs "with" and "without" the contrast, something would be better than nothing. I've never had a problem with it and most of the folks here get scanned with some regularity as part of our treatment and/or follow up plans.
It sounds like you are on the "outside looking in." It's a shame that your Mom won't let you help be an advocate for her and help her with her treatment plan - it would make things so much easier for you both.
As far as the Cancer not being there after so long, I've never been one to assume. It's possible there is no activity, but a CT scan would certainly give you more a warm and fuzzy if you know what I mean.
See if you can get your mom to reconsider her position and do a CT scan - you may need to ask her current doctor why none have ever been ordered for her - did she turn them down? And based on the answers that the doctor gives you and whether you find the information to be the truth, you might still want to consider a 2nd opinion - again just to give you and her a sort of comfort zone on where you are at right now.
Lastly, everyone has the right to determine what they want to do with their fight - Diane makes some good points about what she has been through and her age being 77 - I did not factor that in - we all want to keep life going, but there has to be a quality of life too. Diane makes some good points as she always does
Best of luck with things and keep us posted - and BTW welcome to our forum, there will be others in behind me who will comment as well.
-Craig
I just admire everyone here who is so proactive in this battle. My grandmother (mom's mom) died a year ago at 97 and was my mother's caregiver for 2 years, so you see, my mother seems too young to me to throw in the towel. Yes she has refused all tests other than bloodwork, I guess she just doesn't want to know, but it is really frustrating when she could have many more good yesrs ahead of her. I have told her about this website and would show her how to enter if she would like, maybe she would be inspired by all of you, I know I certainly am.0 -
Grandmother....
You said your Grandmother was your Mother's caregiver for 2 years before she died. Sounds to me like your mother is not as healthy as her mother was.
My mother is 78 and spends almost every weekday at some doctor and getting tests done. If it was on the morning news, she's got it. Her whole life revolves around the fear of death. No quality of life, yet she is perfectly healthy. If a doctor tells her the pain in her hands is arthritis, she bad mouths him and goes to a specialist. She has now seen 5 cardiologist who have all told her there is nothing wrong with her heart. 'Well it might have been okay when they did the test but I KNOW I had a heart attack going to Applebees today!' Today she's having an ultrasound because she thinks she has cancer of the pancreas. She claims to be allergic to Iodine so won't have a CT or eat salt that is iodized.
My mother's mom died in her late 60's from a second stoke. She also had diabetes (adult onset and refused to stop eating fudge every day, etc.) Just because one is healthy and lives a long time doesn't mean the other will.
Is your mom living with you? Can you go with her to her March appointment? I still think it's her choice.0 -
Take US to Her
You can lead a horse to water, but you can't make him drink.
Here's a good idea, Sophie - PRINT out these posts and take them to her and let her read them or you read them to her - maybe hearing others stories will help in some way - it's certainly worth a try.
Maybe something one of us says will click with her.
-Craig0 -
That wasSundanceh said:Take US to Her
You can lead a horse to water, but you can't make him drink.
Here's a good idea, Sophie - PRINT out these posts and take them to her and let her read them or you read them to her - maybe hearing others stories will help in some way - it's certainly worth a try.
Maybe something one of us says will click with her.
-Craig
exactly my idea. However, she hadn't been to the dr. for 44 years prior to diagnosis, literally, no one believes that but is the honest truth, only reason 44 years earlier was because she was pregnant with my brother, so she was healthy as a horse. Only reason she went this time was because she was having a bit of trouble in the bathroom, gee a 6 cm tumor might do that. I have been telling her many stories from here and she was mildly interested, at least enough to ask some questions. I truly appreciate all of you folks input. I think I will try to get her to read somethings from this site, my step dad has a laptop, but right now all she does is dust it.0 -
Do we share moms????
My mom is 87, a double cancer survivor, and has buried 2 men. She recently slipped and fell, and developed a slight case of pneumonia...sigh...and sort of gave up....
BUT, I talked to her, told her what she means to ME!!! And how I wanted her around for as long as possible. So we went to the doctor, and also arranged to have a visiting agency come in and help her...she had cut way back on eating...down to 104 pounds!!! As I talk to her from here in Holland, she seems much better...but I had to say 'You know, mom, I'm not feeling good about you right now, I guess I'll have to cancel my trip!'...
She IS a feisty old lady...lol...she insists that smoking doesn't matter...if it hasn't gotten her by now, well....
Tell your mom what she means to you...it gets us moms every time (my daughter tells me the same...rofl!)
Hugs, Kathi0 -
I agree with Dianedianetavegia said:Mom is 77?
Hey, if Mom is enjoying life, why disrupt her happiness! If I read right, Mom is now 77 and has had her back break in 5 places, broken hip and loads of surgery. Let her enjoy the time she has left!
Diane
With all this doing on is it really worth it? If I was 77 I would NOT go through any of it and would enjoy the time I had left.
Brooks0 -
WITHOUT A SCAN THERE IS NOKathiM said:Do we share moms????
My mom is 87, a double cancer survivor, and has buried 2 men. She recently slipped and fell, and developed a slight case of pneumonia...sigh...and sort of gave up....
BUT, I talked to her, told her what she means to ME!!! And how I wanted her around for as long as possible. So we went to the doctor, and also arranged to have a visiting agency come in and help her...she had cut way back on eating...down to 104 pounds!!! As I talk to her from here in Holland, she seems much better...but I had to say 'You know, mom, I'm not feeling good about you right now, I guess I'll have to cancel my trip!'...
She IS a feisty old lady...lol...she insists that smoking doesn't matter...if it hasn't gotten her by now, well....
Tell your mom what she means to you...it gets us moms every time (my daughter tells me the same...rofl!)
Hugs, Kathi
WITHOUT A SCAN THERE IS NO WAY TO KNOW IF THERE ARE METS OR NOT.
MY CEA NEVER ROSE ABOVE NORMAL
THE ALLERGY TO THE CT SCAN DYE IS THE SAME ALLERGY TO SHELLFISH.
IF SHE CAN EAT SHELLFISH WITHOUT A REACTION,SHE'LL BE FINE WITH THE DYE.0 -
In my case this is not true;KATE58 said:WITHOUT A SCAN THERE IS NO
WITHOUT A SCAN THERE IS NO WAY TO KNOW IF THERE ARE METS OR NOT.
MY CEA NEVER ROSE ABOVE NORMAL
THE ALLERGY TO THE CT SCAN DYE IS THE SAME ALLERGY TO SHELLFISH.
IF SHE CAN EAT SHELLFISH WITHOUT A REACTION,SHE'LL BE FINE WITH THE DYE.
In my case this is not true; I am allergic to the CT dye but I eat shellfish all the time.0 -
Are old people worth bothering about?just4Brooks said:I agree with Diane
With all this doing on is it really worth it? If I was 77 I would NOT go through any of it and would enjoy the time I had left.
Brooks
"If I was 77 I would NOT go through any of it and would enjoy the time I had left."
I really wonder whether that's true. 77 doesn't seem that old, to me (being myself just a decade short of that). When my mother was 77, she was still going strong, and continued in good health until she was 85. I have every intention, myself, of enjoying life until, at least say, 97. If you are prepared to keel over 20 years short of that, that's fine for you, but don't assume others share your enthusiasm for the grave.0 -
Quality of life
My Mom is 90 and doing great, still lives at home by herself. She can't do all she used to but she's 90. Now, knowing what I know after 6 years of this and I was 77 and thought there might be a very good chance of doing all this again at 77 I'd think twice before doing it. I'm not sure I even could do it at that age. I'd choose to enjoy myself more.
That's what I feel I would do
-p
not an easy thing0 -
This is my own humble
This is my own humble opinion, and you can take it with a grain of salt...
What does your mom want?
It could be that her cancer is gone. She went through chemo and radiation already, even though she didn't postoperatively. If it has come back, maybe your mom doesn't want to do anything about it?
It's a federal violation for anyone other than your mother to give you info, and if she won't, she must have reasons. Maybe she doesn't want to worry you or your siblings.
Unfortunately, there isn't much you can do without your mom's permission. She has to give consent to be treated. At least she's going to her Dr's appt's. and getting blood tests. That's a good thing.
Good luck with everything. I really hope your mom is OK.0 -
been there done that with no dye
I can't have any type of contrast dye used on me either for any reason won't sign for it to be done. If you are alergic to something than you don't use it. My C-scan was done with nothing and it revealed my soft ball size tumor on my colon . I was told they didn't have to use a dye inorder to see a tumor. Hope mom does well no matter what she decides..0 -
Allergic to Dye
I'm allergic to the IV contrast dye, but not shellfish. Before scans (I've only had a couple), I was premedicated with prednisone. I took pills the night before and the morning of scans. I have also had a scan without dye. The CT scan results aren't as good without dye, but it worked for me.
Joy0
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