Appendix cancer - Page 2 - Talk About Marriage
Physical & Mental Health Issues Marriage and relationships are difficult by themselves, but coping with physical or mental health problems can make things even more difficult.

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post #16 of 36 (permalink) Old 03-11-2016, 09:29 PM
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Re: Appendix cancer

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I was hoping TAM folks could give me some guidance. My sister was just told she has appendix cancer. Here's how: She sent me a message that she was in the hospital with a ruptured appendix. The MD did surgery and there were no real complications, and she was sent home. The appendix was sent off for lab work and my sister got a call that cancer cells had been found, they would do further lab work and let her know, what if anything was needed.

She was checking her insurance process on line and learned that the MD had scheduled and obtained pre-approval for a partial coloctomy and she panicked. Her doctor's lack of communication makes my blood boil. I asked her what type of cancer, since there are more than one. She had no idea. I asked if she knew the stage or grade of the cancer, again nope. I asked if they were going to schedule a CAT-scan or MRI, and she said no. So I've convinced her to delay any further surgery until she gets more information and can form an actual plan of attack.

From what I've seen this is a fairly rare type of cancer and I'm concerned this small-town surgeon is out of his league.

Any advice?
What questions should she have answered before any surgery?
A CAT scan or MRI will do no good at this point, as the appendix has been removed. They did surgery and staging from that is what you are looking for.

This type of cancer is rare - averaging around 800 cases per year in the US. I have been practicing for over 25 years and I have never seen a case.

Yes, definitely get her to a tertiary care center and with someone who will communicate with her. There is no excuse for that.

With all due respect, diet changes at this point will do nothing. Fungal infections? Ummm, no. Just get her a good oncology team at a tertiary care center or an excellent oncology center. I wish you luck.

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post #17 of 36 (permalink) Old 03-11-2016, 09:40 PM
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Re: Appendix cancer

First things first, what form of cancer are we talking about, colorectal cancer? Asked to have the cells sent to a lab for genetic and proteomic screening, this provides the best way to understand the way forward. She may need to get a colonoscopy as the most reliable source of screening, looking for and removing any polyps for further analysis. After which continuing with any other least invasive scans. The best would best to start with a T1 weighted MRI as this would eliminate any CSF and adipose tissue background noise. One has to start with the most likely issue, carcinoma (epithelial cancers). See someone who knows what they are doing and just be ready to let them know you understand what you are talking about. If you run into a jam post it or send me a PM and I can help you understand the language.
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post #18 of 36 (permalink) Old 03-11-2016, 09:44 PM
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Re: Appendix cancer

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A PoA (flat out, not "Durable") cured this problem in my jurisdiction.
You'll be appalled to learn that where I live, a PoA isn't enough to override medical staff decisions, one needs a separate representation agreement. Here, medical and social services trumps family, including spouses. Most people don't know this.
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post #19 of 36 (permalink) Old 03-11-2016, 09:47 PM
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Re: Appendix cancer

Kivlor, I am very sorry. Best wishes for a good outcome. Wish I had more to offer but there are experts like Hope who know much more than I.
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post #20 of 36 (permalink) Old 03-11-2016, 10:05 PM
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Re: Appendix cancer

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Your questions are the right start. From my mother's cancer, I've learned that you shouldn't trust the medical professionals to have your best interest at heart. I'd ask:

1. Actual cancer diagnosis. What is the name for this specific kind? How does this cancer behave?

2. Staging.

3. Preferred Treatment options.

4. List of risks associated with this treatment, and the odds of those risks.

5. Copy of study on said treatment for your review, so you can check their math.

6. List of other treatment options, their success rates and associated risks.

7. Plan in case of failure of first treatment.

8. Effects of not treating this cancer at this time.

Always check the information they provide. My mother was recommended an allotransplant (bone marrow from yourself). The doctors assured her that the odds of curing (not remission mind you) her cancer were 90%, with a 10% mortality. That is flat out untrue, and no one checked the math. We're lucky she lived. The treatment has over 50% mortality in the first year.

If chemo or any form of drug / intravenous treatment is issued, I would recommend that your sister have a family member present at each treatment to personally check the drug and dosage. My mother's second treatment was never administered in the proper dosage. (but I was already on to them from the previous deception. I was present for every treatment, and corrected it every time.)

Whoever is present for this needs to be strong willed and the kind of person who won't take crap from anyone. Standing up to the nurses can get the police called, so be ready for that. They don't take well to having their authority or expertise questioned. A PoA (flat out, not "Durable") cured this problem in my jurisdiction.

Point of reference any doctor that claims a cure for cancer is a quack. The language is "treatment". There is no cure for cancer, we can screen for it (early hopefully) and then treat it for the best outcome possible.

I'm sorry to hear your mother had to endure this poor treatment. Most oncology teams in my experience are very good at what they do.

Most teams of medical professionals are great at what they do.

I'm all too familiar:

1998 my wife and I moved in with in-laws to take care of my FIL who was in stage four of stomach cancer that had already spread to his liver. We cared for his pain management for seven months so he could die at home surrounded by family.

2005, my sister spent seven weeks in intensive care before we had to make the decision to remove her from life support. The autopsy revealed an aggressive astrocytoma (most common form of brain tumor) in her brain stem. This is an untreatable form of cancer.

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post #21 of 36 (permalink) Old 03-11-2016, 10:20 PM
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Re: Appendix cancer

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Originally Posted by Ikaika View Post
First things first, what form of cancer are we talking about, colorectal cancer? Asked to have the cells sent to a lab for genetic and proteomic screening, this provides the best way to understand the way forward. She may need to get a colonoscopy as the most reliable source of screening, looking for and removing any polyps for further analysis. After which continuing with any other least invasive scans. The best would best to start with a T1 weighted MRI as this would eliminate any CSF and adipose tissue background noise. One has to start with the most likely issue, carcinoma (epithelial cancers). See someone who knows what they are doing and just be ready to let them know you understand what you are talking about. If you run into a jam post it or send me a PM and I can help you understand the language.
This isn't the job of the family or patient to ask for or understand. If they do, great. But any oncologists worth their salt will do genomic screening already. They don't need the patients to ask for it.

Also note that she has already had surgery, and it was diagnosed as carcinoma of the appendix. So, an MRI is pointless now.
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post #22 of 36 (permalink) Old 03-11-2016, 10:34 PM
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Re: Appendix cancer

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Originally Posted by sapientia View Post
You'll be appalled to learn that where I live, a PoA isn't enough to override medical staff decisions, one needs a separate representation agreement. Here, medical and social services trumps family, including spouses. Most people don't know this.
It's pretty bad here too. Normally, most people have what we call a "Durable Power of Attorney" and doctors don't have to listen to it. Law calls for such a document to only take effect if 2 separate doctors declare the patient unfit to make decisions. So the doctors determine if you're in charge, or if they are. Tell me that's not a rigged system.

I had an attorney draft up a very specific PoA, which didn't require my mother "be incapacitated" or otherwise unable to make decisions. It flat out stated that no matter what, I was the final authority for all of her affairs, be it medical, financial or otherwise. If I speak, it is my mother's voice speaking. It's on record with every doc she speaks to.

They could ignore it, and do what they want, but it would end poorly for them in the courts. And woe be unto them if they ignored it and it cost my mom's life.

Do you hear the people sing / Lost in the valley of the night?
It is the music of a people / Who are climbing to the light.
For the wretched of the earth / There is a flame that never dies.
Even the darkest night will end / And the sun will rise...
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post #23 of 36 (permalink) Old 03-11-2016, 10:39 PM
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Re: Appendix cancer

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This isn't the job of the family or patient to ask for or understand. If they do, great. But any oncologists worth their salt will do genomic screening already. They don't need the patients to ask for it.

Also note that she has already had surgery, and it was diagnosed as carcinoma of the appendix. So, an MRI is pointless now.

If she had already been diagnosed with a carcinoma of the appendix I would greatly concerned as to the primary origin given that this is almost exclusively lymphatic tissue.

Good teams like to include the family as part of that team. Nothing wrong with asking appropriate questions and getting appropriate answers.


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post #24 of 36 (permalink) Old 03-11-2016, 10:45 PM
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Re: Appendix cancer

Pluto
Find a Board Certified Oncologist in your area. Do you have a large Medical Center nearby? He will review the Pathology report and will probably order blood work and possible a Pet Scan. They will attempt to Stage the cancer and see if they need to biopsy of other parts.
Do let anyone do surgery on her until she get a second or third opinion from another Oncologist. She will also need a few opinions from Oncologist Surgeons.
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post #25 of 36 (permalink) Old 03-11-2016, 10:46 PM
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Re: Appendix cancer

Doctors are one of the leading causes of death. While there is no perfect solution to this, the family must be involved as much as possible to try to prevent unnecessary death.

Sorry if this ruffles the feathers of any of the esteemed physicians on the board, but that's the way it is. See It?s Time to Account for Medical Error in ?Top Ten Causes of Death? Charts | Journal of Participatory Medicine as just one analysis of this issue.


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post #26 of 36 (permalink) Old 03-11-2016, 10:48 PM
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Re: Appendix cancer

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Originally Posted by Kivlor View Post
It's pretty bad here too. Normally, most people have what we call a "Durable Power of Attorney" and doctors don't have to listen to it. Law calls for such a document to only take effect if 2 separate doctors declare the patient unfit to make decisions. So the doctors determine if you're in charge, or if they are. Tell me that's not a rigged system.

I had an attorney draft up a very specific PoA, which didn't require my mother "be incapacitated" or otherwise unable to make decisions. It flat out stated that no matter what, I was the final authority for all of her affairs, be it medical, financial or otherwise. If I speak, it is my mother's voice speaking. It's on record with every doc she speaks to.

They could ignore it, and do what they want, but it would end poorly for them in the courts. And woe be unto them if they ignored it and it cost my mom's life.
My wife and I each have one of those for the other.

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post #27 of 36 (permalink) Old 03-11-2016, 10:48 PM
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Re: Appendix cancer

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Originally Posted by Ikaika View Post
If she had already been diagnosed with a carcinoma of the appendix I would greatly concerned as to the primary origin given that this is almost exclusively lymphatic tissue.

Good teams like to include the family as part of that team. Nothing wrong with asking appropriate questions and getting appropriate answers.


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Of course, but you have the cart way ahead of the horse IMO.

First step is to get a great care team. Throwing in things about primary origin based on a post on a forum is crazy and just offers more confusion to the OP. I have no idea and neither do you, so it's a moot point now. I hope the OP can find a good healthcare team rather than the small-town doc she referred to in the original post, who can do a better job of communicating.
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post #28 of 36 (permalink) Old 03-11-2016, 11:00 PM
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Re: Appendix cancer

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Of course, but you have the cart way ahead of the horse IMO.



First step is to get a great care team. Throwing in things about primary origin based on a post on a forum is crazy and just offers more confusion to the OP. I have no idea and neither do you, so it's a moot point now. I hope the OP can find a good healthcare team rather than the small-town doc she referred to in the original post, who can do a better job of communicating.

Yep, great care, I agree. But, screening for origins of this cancer especially if it's a carcinoma should be part of that primary care. I would be one to catch things earlier so that any possible treatment comes on the heels of recovery.

I agree with you, but I don't see where asking about wether this requires more screening should be ruled out. I only suggest a proteomic and genetic screening to look for phenotype transitions. This would help to eliminate any need for further screening. I would hope that even the small town doc would consider doing this. So maybe I overstepped my bounds. I will bow out. So, OP, never mind. I just hope she gets good care and hope for the best outcomes.


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post #29 of 36 (permalink) Old 03-12-2016, 01:34 PM Thread Starter
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Re: Appendix cancer

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Yep, great care, I agree. But, screening for origins of this cancer especially if it's a carcinoma should be part of that primary care. I would be one to catch things earlier so that any possible treatment comes on the heels of recovery.

I agree with you, but I don't see where asking about wether this requires more screening should be ruled out. I only suggest a proteomic and genetic screening to look for phenotype transitions. This would help to eliminate any need for further screening. I would hope that even the small town doc would consider doing this. So maybe I overstepped my bounds. I will bow out. So, OP, never mind. I just hope she gets good care and hope for the best outcomes.




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Never bow out dear @Ikaika. I always find you to be a wealth of information and support.

Thanks everyone for your input. I can only assume at this point that it was actually carcinoma of the appendix. Its another one of those questions we don't have answers to. My preliminary research indicated that there are at least four different varieties, some being more aggressive than others, and some of which could have easily spread to the lymphatic system already. So would not a CAT-scan or MRI give some indication of whether or not this had happened? Also, the appendix ruptured, so I'm concerned about general spreading. Maybe that isn't a real concern, but its there.

She has an apt. with her surgeon on Tuesday and I've told her some things she absolutely has to have answers to. What type, the staging, how aggressive is this variety, is chemo required, if she needs chemo then how would that impact her Lupus, how many times has this guy treated this form of cancer? She is about a half-hour away from Duke Medical Center and I've located one oncology surgeon who has dealt with appendix cancer.

And I live up in Virginia, so going to the Tuesday appointment isn't something I can swing, but I might see about a phone chat.

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post #30 of 36 (permalink) Old 03-12-2016, 01:38 PM Thread Starter
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Re: Appendix cancer

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A CAT scan or MRI will do no good at this point, as the appendix has been removed. They did surgery and staging from that is what you are looking for.

This type of cancer is rare - averaging around 800 cases per year in the US. I have been practicing for over 25 years and I have never seen a case.

Yes, definitely get her to a tertiary care center and with someone who will communicate with her. There is no excuse for that.

With all due respect, diet changes at this point will do nothing. Fungal infections? Ummm, no. Just get her a good oncology team at a tertiary care center or an excellent oncology center. I wish you luck.
I had no idea it was that rare.
I mentioned this in a response to Ikaika, but would a cat-scan/MRI be of any value in determining whether the cancer has already spread? I have no idea if he removed any lymph nodes during the original surgery.

I am very appreciating of your input. Thanks.

In youth it was a way I had, to do my best to please, And change, with every passing lad to suit his theories.
But now I know the things I know, and do the things I do; And if you do not like me so, To hell, my love, with you! --Dorothy Parker
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