"Marie", has a new primary care "Doctor" now

Krystal Shay said:
You call the hospital, doctors, the staff, or whoever, 100 times a day, if you have too. I can't believe it has been this difficult for you to get an appointment set up. That is so unacceptable! When my neighbor was diagnosed with breast cancer, they got her in asp. for: tests, biopsies, blood work and so on.
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Krystal, it has been one ride after another to hospitals, and dr a couple weeks now.
I think we live in the Twilight Zone.
A few minutes ago we did fet an aappointment for biopsy.
 
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Krystal Shay said:
You call the hospital, doctors, the staff, or whoever, 100 times a day, if you have too. I can't believe it has been this difficult for you to get an appointment set up. That is so unacceptable! When my neighbor was diagnosed with breast cancer, they got her in asp. for: tests, biopsies, blood work and so on.
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Same here. I went to MD Anderson and they handled everything. It all went so quickly and smoothly that it frustrates me to read about Marie's struggle for treatment.
 
Beth Gallagher said:
Same here. I went to MD Anderson and they handled everything. It all went so quickly and smoothly that it frustrates me to read about Marie's struggle for treatment.
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Ditto! During both my cancer diagnosis, while I saw several doctors, it was always within a few days. In both cases, the doctor giving the initial diagnosis, sent me to the doctor that I saw the same day and did a biopsy on the spot and then set up all the scans and blood test and after receiving the biopsy result, set up surgery. I had to call no one for appointments.

I can't even imagine Marie and Jakes level of frustration. I live across the country, but I want to go and have some words with these doctors that give people a fatal sounding cancer dx without a biopsy or PET scan. If these bozos are such experts, then why the hell didn't they have a biopsy done? All they had to do was have a lab person come in and do it and send results to Marie's PCP. While ER doctors are not in the business of doing biopsies, they also not in the business of giving other than a possible diagnosis and it is their job to recommend that patients get to their PCP or other doc, pronto.

While my PCP suspected that one of my cancers might be returning, she sent me to an oncologist/urologist. That specialist using an exam and blood test, then ordered a MRI/PET to check for any aggressive cancer. Since a biopsy is a very painful and can cause more problems than good in these slow growing cancers, she will not do one until she sees it becoming more aggressive. Hopefully it never will. I am on 6 month watch and testing for life. She is only one to give the firm diagnosis, without biopsy, based on her 30 years of experience. Other doctors might suspect, but they simply can't make a diagnosis other than possible. Other doctors could make a positive diagnosis if they had a biopsy done, based on the lab report.

I hope this explains why I am so frustrated over Marie's situation. I can't imagine living under the stress of cancer eating up my tailbone with no PET or biopsy to confirm it and no treatment plan in place.
 
Marie, were I not to care I would be as quiet as a church mouse. Patients have to stay on top of their game. It is not only one life that depends on it. Now is your chance to turn this mess around. Please into all of those appointments with an open mind. No surgery is your decision - after everything has been said and done.
Get your hair done. Pull out a pretty out fit. A dab of perfume is a feel good thing. Tell your sunshine that you love him.
 
Faye Fox said:
Having a biopsy would have really helped getting into an Oncologist, pronto! I still can't believe they didn't do that in the ER after they suspected cancer. I am so glad to hear that you finally got to talk to an Oncologist office.

The most common place responsible for upper spinal cancerous tumors in women is breast cancer. Tailbone tumors are most commonly from rectal or colon cancer in women. In men, prostate cancer is the main source of spread. I don't see any reason for a brain scan because cancer very rarely starts in the brain. I am guessing your oncologist will take a biopsy and want a breast scan and possibly a colonoscopy. There will also be a lot of blood test.
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I was thinking maybe not started in the brain too; was scared to let them go at it scanning everything, and thought she should be seen by an oncologist first, and he could tell us what to do. Didn't know they wouldn't be doing all the tests, like biopsies, pet scans, and such. Wasn't thinking he would be saying he can't do anything until those tests are done, or I may have said get the test done. But come Monday, biopsies will be done and I'm going to ask if they can do the pet scan too, if so will call the oncologist for a fax with a referral, or we will be still waiting for a call for appt. on a pet scan. Live and learn, I guess.
 
Jake Smith said:
I was thinking maybe not started in the brain too; was scared to let them go at it scanning everything, and thought she should be seen by an oncologist first, and he could tell us what to do. Didn't know they wouldn't be doing all the tests, like biopsies, pet scans, and such. Wasn't thinking he would be saying he can't do anything until those tests are done, or I may have said get the test done. But come Monday, biopsies will be done and I'm going to ask if they can do the pet scan too, if so will call the oncologist for a fax with a referral, or we will be still waiting for a call for appt. on a pet scan. Live and learn, I guess.
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Yes Jake, learn and LIVE. You are dealing with your local medical community and Marie. More than a full load but you have those who listen. Nothing is permanent until the fat lady sings.
Please establish a routine. Yes, you have one but make it tighter and include “you time”.
I was at breaking point (Nobody but a friend in Europe knew about SO’s second back surgery.). He was asleep. I could see him from the patio. A glass of wine and a book I can probably quote but some me time.
Have you looked at bathroom/shower?
 
Marie Miller said:
Marie, were I not to care I would be as quiet as a church mouse. Patients have to stay on top of their game. It is not only one life that depends on it. Now is your chance to turn this mess around. Please into all of those appointments with an open mind. No surgery is your decision - after everything has been said and done.
Get your hair done. Pull out a pretty out fit. A dab of perfume is a feel good thing. Tell your sunshine that you love him.
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Thank you Marie, sounds like good advice.
 
Jake Smith said:
I was thinking maybe not started in the brain too; was scared to let them go at it scanning everything, and thought she should be seen by an oncologist first, and he could tell us what to do. Didn't know they wouldn't be doing all the tests, like biopsies, pet scans, and such. Wasn't thinking he would be saying he can't do anything until those tests are done, or I may have said get the test done. But come Monday, biopsies will be done and I'm going to ask if they can do the pet scan too, if so will call the oncologist for a fax with a referral, or we will be still waiting for a call for appt. on a pet scan. Live and learn, I guess.
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I hope I am not out of line here and overstepping, but until you get biopsy results, it is easy to imagine the worst. The size of a tumor doesn't always indicate the stage it is in, even if in fact it is cancerous. In my case when they found my tumor and biopsied it, the doc said it was big and appeared advanced. He felt it was cancer and could be stage 3 or 4, but without the lab results, that assessment was based on his educated and experienced best guess. He was a gastrointestinal doc that did endoscopy and colonoscopy all day, 4 days a week. He knew cancer very well.

He told me to not stress about it, because without the lab results, it wasn't legally or medically a diagnosis of cancer. He said while the chances that it wasn't were slim, there is always that chance. It turned out to be cancer by the biopsy, but the stage could only be established l after it was removed. When it was removed and biopsied again with surrounding tissue and lymph nodes, it was stage 1 going on stage 2. No spread and no penetrating through the tissue it was growing on. He was surprised that such a large in diameter tumor was so flat.

I am sharing this in hopes both of you will try not to think the worst based on the ER doctors and others that have just read the MRI and Cat scan. Did they do the contrast imaging? That would tell more, but still not a "chiseled in rock" cancer diagnosis and certainly not evidence it is terminal. Try to enjoy the next few days, best you can, while waiting for the biopsy and results. I have no doubt an Oncologist will order a PET scan. It is imperative they study any tissue that might be effected.
 
Faye Fox said:
I hope I am not out of line here and overstepping, but until you get biopsy results, it is easy to imagine the worst. The size of a tumor doesn't always indicate the stage it is in, even if in fact it is cancerous. In my case when they found my tumor and biopsied it, the doc said it was big and appeared advanced. He felt it was cancer and could be stage 3 or 4, but without the lab results, that assessment was based on his educated and experienced best guess. He was a gastrointestinal doc that did endoscopy and colonoscopy all day, 4 days a week. He knew cancer very well.

He told me to not stress about it, because without the lab results, it wasn't legally or medically a diagnosis of cancer. He said while the chances that it wasn't were slim, there is always that chance. It turned out to be cancer by the biopsy, but the stage could only be established l after it was removed. When it was removed and biopsied again with surrounding tissue and lymph nodes, it was stage 1 going on stage 2. No spread and no penetrating through the tissue it was growing on. He was surprised that such a large in diameter tumor was so flat.

I am sharing this in hopes both of you will try not to think the worst based on the ER doctors and others that have just read the MRI and Cat scan. Did they do the contrast imaging? That would tell more, but still not a "chiseled in rock" cancer diagnosis and certainly not evidence it is terminal. Try to enjoy the next few days, best you can, while waiting for the biopsy and results. I have no doubt an Oncologist will order a PET scan. It is imperative they study any tissue that might be effected.
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Yes he has already ordered a pet scan, said that it may take two weeks before they call. Plan to push for that next, like we did biopsies. I've been holding on to hope ever since they found this, and won't give up hope. Her blood work isn't showing what I think would be showing in wbc or rbc. I'm no doc but hope it started where it's at. No they didn't use contrast dye for she's had allergic reactions to it before, And oncologist said her organs look fine with what he saw from MRI.

Woke this morning 1 2 3 am; got on up to get ready for biopsies, sleep doesn't come easy for either of us anymore, wake and your mind takes off to races.
 
Marie Miller said:
Yes Jake, learn and LIVE. You are dealing with your local medical community and Marie. More than a full load but you have those who listen. Nothing is permanent until the fat lady sings.
Please establish a routine. Yes, you have one but make it tighter and include “you time”.
I was at breaking point (Nobody but a friend in Europe knew about SO’s second back surgery.). He was asleep. I could see him from the patio. A glass of wine and a book I can probably quote but some me time.
Have you looked at bathroom/shower?
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Try to keep up, and take a little time on a tractor carrying the two way radio. Haven't looked into any bathroom / showers, had put up pull bars and such in the one she uses a while back. Emotions really run high, in trying times.
 
Jake Smith said:
Yes he has already ordered a pet scan, said that it may take two weeks before they call. Plan to push for that next, like we did biopsies. I've been holding on to hope ever since they found this, and won't give up hope. Her blood work isn't showing what I think would be showing in wbc or rbc. I'm no doc but hope it started where it's at. No they didn't use contrast dye for she's had allergic reactions to it before, And oncologist said her organs look fine with what he saw from MRI.

Woke this morning 1 2 3 am; got on up to get ready for biopsies, sleep doesn't come easy for either of us anymore, wake and your mind takes off to races.
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We will be thinking of you and Marie today, Jake.
 
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