Marie Mallory
Well-known member
Thank you again Beth.I', rethinking some of the things about this for last couple days.
I welcome all the comments from you and others here.
"Marie", has a new primary care "Doctor" now
- Thread starter Jake Smith
- Start date
I welcome all the comments from you and others here.
Marie Mallory
Well-known member
First off from what I've researched even with treatment , I have months, not years since we know it has spread. Pärt of tailbone is gone, and cat scan ,MRI both confirm T12 and S 1 tumors.
What I have is Mastastis Choredoma.
I'm 76 and after smoking for 64 of those years I feel I lived a long life.
My friend and I bought out first pack of cig's at 12 yr old.We worked in restaurant washing dishes.
What I have is Mastastis Choredoma.
I'm 76 and after smoking for 64 of those years I feel I lived a long life.
My friend and I bought out first pack of cig's at 12 yr old.We worked in restaurant washing dishes.
Marie Miller
Well-known member
Who gave you the diagnosis Marie?
Tony Page
Well-known member
Marie,
I am not a doctor, but don't let your mind wander. Wait for your oncologist plan for treatment, if you've research from the internet it's not always accurate.
I know it really doesn't matter, but I'm pretty sure Mastastis Choredoma is not the results of smoking.
Make a list of questions/concerns for your oncologist, and make sure his answers satisfy you. Use that Marie wisdom that I've experienced over the years for positive thoughts.
Thoughts and Prayers
Tony
Faye Fox
Well-known member
If you have Metastatic Chordoma then where did the cancer come from? If the tumors originated in the spine, then the cancer isn't metastatic and chances that cancer from C-1 spread to the tailbone are 1 in 10 million. Chances that the tumors originated in the spine are 1 in 1 million. There are other types of spine cancer other than Chordoma.
The most likely case is that the cancer spread to the tailbone and spine from either the colon or breast. Recently a friend died from colon cancer that spread to his tailbone and spine and other organs. Had he not been stubborn about getting a colonoscopy, he would be alive today. He was 80 and never had a colonoscopy. Another spread to the tailbone in men is prostate.
In women usually colon or in rarer cases, vaginal. Since I know my colon is free from cancer, this is why I keep a close eye on vaginal cancer that the doc believes to be very low grade and slow growing. Chances are I will be 85 before I need treatment, but since there are no hard and fast rules, I keep my 6 month appointments and go in anytime I have tailbone problems.
"I keep a close watch on this ass of mine, I keep my eyes open all the time......."
Have you had a recent colonoscopy? A recent mammogram? My point is without a biopsy and a PET Scan, then while assuming it is cancer, is reasonable, the kind and stage of cancer is pure speculation. I would encourage you to cooperate with at least a PET scan, so the Oncologist can start mapping what they have to deal with. It is your right and decision to refuse any further testing and treatment, but please give it some thought. I don't understand hospice visiting before you even have a firm diagnosis, but whether any of us understand, doesn't matter. What matters is that you do what you want.
I can think of nothing worse than undergoing a surgery and horrible treatment, just to gain a few more months or even a couple of years to live, years spent in pain and mental agony. Finally, again my point is get all the testing done before making up your mind. Cancer is like an enemy ... it is best to know all about that enemy before surrendering or going into battle.
Jake Smith
Well-known member
Thanks Tony, you are a caring and compassionate man, good friend to have, Marie and I have been through it with this roller coaster ride, now going into seven months, wears you completely out. I think on biopsies, from researching, they're scared at the age she is, and the location of cancer, they say it's very risky to do involving the spinal chord and other things like arteries, nerves and spread of cancer. Still waiting to hear back from the bone Dr., who said he will "call", soon as he has a team together to help her. I'm not trying to ignore you good and helpful folks, just that cat has had my tongue for months now, dealing with all this and can only imagine what mentally and physically it's putting Marie through.
Tony Page
Well-known member
Jake,
First let me say I don't feel ignored I know you're going through a living h...., stress can be a foe just like the cancer is.
If you need a sounding board we are all here to support you and Marie.
We all have opinions including me on what to do. But you have to do what's best for you and Marie. I will say I'm a little confused, but the only thing I can offer is my prayers, my thoughts, and my love for you guys.
I have to add one more thought I think you're pursuing a good path in getting doctor's advice.
Tony
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Faye Fox
Well-known member
If you haven't already, please read the Medicare rules concerning hospice. Before you see a doctor or do anything medical, other than an emergency unrelated to cancer, please call your hospice people. They have to make any or all appointments for the doctor or hospitalization. They also are responsible to get you drugs needed.
It is important to discuss everything medical with them, so you don't get hung with a big bill for services that Medicare once paid for, but now doesn't because you are in hospice care. Your hospice team is now in charge, so run everything by them. They will make any appointments for you, if they meet the guidelines of hospice.
www.medicare.gov
It is important to discuss everything medical with them, so you don't get hung with a big bill for services that Medicare once paid for, but now doesn't because you are in hospice care. Your hospice team is now in charge, so run everything by them. They will make any appointments for you, if they meet the guidelines of hospice.
Hospice care
Have terminal illness or know someone who does? Get hospice care coverage. Choose between in home, inpatient facility care. Learn more at Medicare.
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Marie Mallory
Well-known member
Faye this is so true, and thanks for reminding what I read and the basically they said.If you haven't already, please read the Medicare rules concerning hospice. Before you see a doctor or do anything medical, other than an emergency unrelated to cancer, please call your hospice people. They have to make any or all appointments for the doctor or hospitalization. They also are responsible to get you drugs needed.
It is important to discuss everything medical with them, so you don't get hung with a big bill for services that Medicare once paid for, but now doesn't because you are in hospice care. Your hospice team is now in charge, so run everything by them. They will make any appointments for you, if they meet the guidelines of hospice.
Hospice care
Have terminal illness or know someone who does? Get hospice care coverage. Choose between in home, inpatient facility care. Learn more at Medicare.
The very last thing I want is to leave Jake with high dept because of my ignorance.
Tony Page
Well-known member
Marie, Jake
In my last post I wrote I was a little confused, that's generally natural for me.
My understanding is you refuse a cat scan because you're worried about the pain. I'm sure you're not the first person to have this issue. They must have a way of reducing or eliminating the pain so you could get the needed CAT scan.
The cancer you mentioned is slow-growing type called chordoma. If it metastasized there still may be treatment to slow it's growth, and reduced the pain to manageable.
Listen to what the doctors recommends.
Tony
In my last post I wrote I was a little confused, that's generally natural for me.
My understanding is you refuse a cat scan because you're worried about the pain. I'm sure you're not the first person to have this issue. They must have a way of reducing or eliminating the pain so you could get the needed CAT scan.
The cancer you mentioned is slow-growing type called chordoma. If it metastasized there still may be treatment to slow it's growth, and reduced the pain to manageable.
Listen to what the doctors recommends.
Tony
Jake Smith
Well-known member
Tony, I agree on seeking treatments where it's not to risky and painful, by risky I mean the bone doctor told me, her being 76 yo and frail 94 lbs, and location of cancer masses, being in her spine is a very risky procedure. She says she just wants as much comfort dealing with this and not more pain. It's hard all the way round.
Jake Smith
Well-known member
If you haven't already, please read the Medicare rules concerning hospice. Before you see a doctor or do anything medical, other than an emergency unrelated to cancer, please call your hospice people. They have to make any or all appointments for the doctor or hospitalization. They also are responsible to get you drugs needed.
It is important to discuss everything medical with them, so you don't get hung with a big bill for services that Medicare once paid for, but now doesn't because you are in hospice care. Your hospice team is now in charge, so run everything by them. They will make any appointments for you, if they meet the guidelines of hospice.
Hospice care
Have terminal illness or know someone who does? Get hospice care coverage. Choose between in home, inpatient facility care. Learn more at Medicare.
Thanks Faye,
Researched this some and seems like they will cover only the terminal but anything else will continue to be cover by Medicare.
- Unrelated Conditions: Treatments for unrelated conditions can continue, but hospice generally does not cover services meant to cure or treat unrelated illnesses, nor do they cover "aggressive" treatments.
Marie Mallory
Well-known member
Tony thanks again for your concern, but it is terminal and the procedures to prolong is not just painful but also don't offer that much time.
It is in my head too ,I have knots on forehead and back of head.
They think it started in my lungs which is very likely since I smoked for 64 years ,since I was 12.
I can't believe I lasted this long. A few more months isn't going to matter. Jake is 70 and I wish he would slow down actually quit smoking but of course this is not a time for that.
Tony Page
Well-known member
I agree, I'm sorry that both of you are going through this.
My prayers, and thoughts
Tony
It sounds like you are working out what the doctors are saying is best, and if they do not think they have treatment that will help you, then I can totally understand you not putting yourself through any needless pain.
This is still a time where you can do the things that you are able to do to help your quality of life, like eating anti-cancer foods, and if you wanted to try some of the other cancer treatments (like the parasite tablets for people), then it seems to me that you should be able to do any of that that looks hopeful to you, at this point.
At this point, it all comes down to what you and Jake decide is the best way forward and to spend whatever time remains. We are praying for you, along with others here, and everyone on the forum are all heartbroken that you are having to go through this, and just wish there was something we could do to help.
As always, sending love and HUGS !
Marie Mallory
Well-known member
Yvonne again we appreciate all of you here and you have been great to us. I have thought about the Ivemectin also, may look into it more long as no side effects.
The Tylenol can irritate stomach sometimes, and late yesterday I had a panic attack and ask Jake to take me for a ride, which did help alot. The worse part is mental, the pain I can pretty much keep under control.
You all here have really helped me mentally, although I sure don't want this to interfere with you people's mental health.
I feel selfish useing yall sometimes.
Don Alaska
Well-known member
But they often cover treatments that alleviate pain. Depends on the state I think.
Marie Miller
Well-known member
Her team can send her to pain management. It requires asking for it.
Marie Miller
Well-known member
No Marie, you are welcome to lash out as long as you come back when you are yourself.
We had a fairly large patio and a brick walkway around the back yard. Third “no touch anything” bottom of the foot surgery. SO built me a paddle boat on wheels so I could go outside. Paddle with my hands, roll over and pull cushion wedges to sit up and read.
Cabin fever - let Jake take you on drives!!!
Hedi Mitchell
Well-known member
@Tony Page - good answers and response, short, sweet to the point. 
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