# Appendix cancer



## Pluto2 (Aug 17, 2011)

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?


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## SecondTime'Round (Jan 15, 2015)

Wow, so sorry to hear that. I've never heard of such a thing! Second opinion!!!


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## Pluto2 (Aug 17, 2011)

SecondTime'Round said:


> Wow, so sorry to hear that. I've never heard of such a thing! Second opinion!!!


I know!
She's about half-hour from a major medical center and could easily obtain a second opinion. She said it never occurred to her.


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## bluezone (Jan 7, 2012)

Absolutely second opinion and possibly third opinion. 

Doctors often don't communicate well...they might be book smart but many times they are lacking in basic people skills. Also, there are MANY alternative ways to treat cancer with great results. You can also supplement traditional treatments with alternative for better care. NUMBER ONE is DIET. Does she eat well? Also cut out all sugar as cancer cells feed on it.


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## Kivlor (Oct 27, 2015)

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.


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## Pluto2 (Aug 17, 2011)

No, her diet is just horrid.

I've heard about the connection between cancer and sugar, before, but I wasn't sure if it was accurate.


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## Kivlor (Oct 27, 2015)

Pluto2 said:


> No, her diet is just horrid.
> 
> I've heard about the connection between cancer and sugar, before, but I wasn't sure if it was accurate.


There is some question to it. I don't know much about that association though.

There is a known association between cancer cases and fungal infection in the blood. 99% of tumors have a tremendous fungal infection in them; typically candida fungus. Candida fungus' waste product is called mycotoxins, the most carcinogenic substance known to man. The association has been known for over 100 years. 

Today, fungal infection is actually one of the primary causes of death among cancer patients receiving treatments.


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## whiteshadow (Mar 5, 2016)

Yes, she should get a second opinion. 

You might find this video somewhat informative. I'm not a medical professional nor have I ever had cancer, but sometimes it's good to know what is out there.
https://www.youtube.com/watch?v=ddADeIsXrOw


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## bluezone (Jan 7, 2012)

Pluto2 said:


> No, her diet is just horrid.
> 
> I've heard about the connection between cancer and sugar, before, but I wasn't sure if it was accurate.


Well if she wants to recover, she needs to pay attention to her diet. NO processed foods, don't eat anything that has 30 ingredients you cannot pronounce, start eating REAL FOOD, not packaged crap. Organic would be best, although it ain't cheap. Google cancer and sugar. Sorry she is dealing with this.


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## bluezone (Jan 7, 2012)

Kivlor said:


> There is some question to it. I don't know much about that association though.
> 
> There is a known association between cancer cases and fungal infection in the blood. 99% of tumors have a tremendous fungal infection in them; typically candida fungus. Candida fungus' waste product is called mycotoxins, the most carcinogenic substance known to man. The association has been known for over 100 years.
> 
> Today, fungal infection is actually one of the primary causes of death among cancer patients receiving treatments.


^^^^ I agree YES


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## Pluto2 (Aug 17, 2011)

bluezone said:


> Well if she wants to recover, she needs to pay attention to her diet. NO processed foods, don't eat anything that has 30 ingredients you cannot pronounce, start eating REAL FOOD, not packaged crap. Organic would be best, although it ain't cheap. Google cancer and sugar. Sorry she is dealing with this.


Also, and she has Lupus. It might not have much of a factor on any surgery, but I would think it would should any chemo be required.


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## Pluto2 (Aug 17, 2011)

Kivlor said:


> 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?
> 
> ...


This is really helpful, thanks, and so sorry about your Mom's ordeal. I hope she's doing better now.


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## Kivlor (Oct 27, 2015)

Pluto2 said:


> This is really helpful, thanks, and so sorry about your Mom's ordeal. I hope she's doing better now.


She's great today (knock on wood). I only relayed the details because I hoped they'll be helpful. Glad you thought they might be so. I hope your sister's cancer is a very treatable kind. 

If I think of more things, I'll post them later Pluto


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## Affaircare (Jan 11, 2010)

bluezone said:


> Absolutely second opinion and possibly third opinion.



QFT!! (Quoted for Truth)

NO ONE will advocate for your sister's health like your sister herself. She knows herself, knows her own health, knows her body--so @Pluto2 I strongly encourage you to get 2nd and 3rd opinions, gather info from the doctors and on your own, and THEN help her make a decision for herself.


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## Pluto2 (Aug 17, 2011)

Thanks @Affaircare!


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## Hope Shimmers (Jul 10, 2015)

Pluto2 said:


> 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.
> 
> ...


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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## Ikaika (Apr 23, 2012)

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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## sapientia (Nov 24, 2012)

Kivlor said:


> 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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## sapientia (Nov 24, 2012)

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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## Ikaika (Apr 23, 2012)

Kivlor said:


> 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?
> 
> ...



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. 

Sending you and Pluto aloha. 


Sent from my iPad using Tapatalk


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## Hope Shimmers (Jul 10, 2015)

Ikaika said:


> 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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## Kivlor (Oct 27, 2015)

sapientia said:


> 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.


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## Ikaika (Apr 23, 2012)

Hope Shimmers said:


> 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. 


Sent from my iPad using Tapatalk


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## VeryHurt (Mar 11, 2011)

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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## tech-novelist (May 15, 2014)

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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## tech-novelist (May 15, 2014)

Kivlor said:


> 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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## Hope Shimmers (Jul 10, 2015)

Ikaika said:


> 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.
> 
> ...


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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## Ikaika (Apr 23, 2012)

Hope Shimmers said:


> 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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## Pluto2 (Aug 17, 2011)

Ikaika said:


> 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.
> 
> ...


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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## Pluto2 (Aug 17, 2011)

Hope Shimmers said:


> 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.
> 
> ...


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.


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## Hope Shimmers (Jul 10, 2015)

Pluto2 said:


> 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.


Tumor size (either less than or more than 2 cm) is a primary determinant for whether or not the cancer has spread. It almost never spreads to the liver, and only in a minority of cases has it spread at all. Even for tumors bigger than 3 cm only 1/3 or so have spread. For tumors less than 2 cm, virtually none have spread. If a person has certain symptoms (of something called carcinoid syndrome - flushing, wheezing, etc) the chance is much greater that it has spread.

CT and MRI are used in some cases for diagnosing whether the cancer has spread. However, because tumor size has prognostic significance most don't use it in this way. If there is spread, it usually is to local lymph nodes. If the tumor is very large, it may be used to determine is there is spread to the liver, but again that is the rare case. The decision of whether to subject the person to a right colectomy is controversial. If it is questionable that this is the case, or in the case of being cautious, they will do a right colectomy which is an additional step past the initial appendectomy and includes removal of the draining lymph nodes of the appendix and any residual disease. 

I can't speak for your case of course but in general prognosis is pretty good. It's primarily determined by tumor size. Hope this helps. 

Disclaimer, disclaimer.... just my opinion

PS Most (about 80-90%) of cancers of the appendix are carcinoid tumors; there are other more rare types as well.


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## Pluto2 (Aug 17, 2011)

Hope Shimmers said:


> Tumor size (either less than or more than 2 cm) is a primary determinant for whether or not the cancer has spread. It almost never spreads to the liver, and only in a minority of cases has it spread at all. Even for tumors bigger than 3 cm only 1/3 or so have spread. For tumors less than 2 cm, virtually none have spread. If a person has certain symptoms (of something called carcinoid syndrome - flushing, wheezing, etc) the chance is much greater that it has spread.
> 
> CT and MRI are used in some cases for diagnosing whether the cancer has spread. However, because tumor size has prognostic significance most don't use it in this way. If there is spread, it usually is to local lymph nodes. If the tumor is very large, it may be used to determine is there is spread to the liver, but again that is the rare case. The decision of whether to subject the person to a right colectomy is controversial. If it is questionable that this is the case, or in the case of being cautious, they will do a right colectomy which is an additional step past the initial appendectomy and includes removal of the draining lymph nodes of the appendix and any residual disease.
> 
> ...


thank you. So much.


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## Anon Pink (Jan 17, 2013)

You don't know the point of origin of this cancer so Google is useless right now. No treatment plan or further procedures can be discussed until they know the point of origin and hopefully the tissue samples that found the cancer cells can be further evaluated to discern they type of cancer she has. Those cancer cells found in could have migrated from anywhere in her body.

My sister had kidney cancer that was discovered from a tumor in her spine. So it wasn't bone cancer. The tumors in her lungs weren't lung cancer. The tumors in her thyroid weren't thyroid cancer. They were all renal carcinoma that had matasitasized.

The good news is that if the point of origin is indeed her appendix, it has a greater chance of being caught early.

When the doctor mentions the word cancer, the patient stops hearing. It's not uncommon for the patient to have no information simply because they were in shock and didn't hear what the doctor said. But as others have said here, someone should always be present with your sister, preferably someone who can think to ask the tough questions. Take notes.

Lastly, keep in mind your sister maybe doesn't know the answers because she doesn't want to know. If that is how she feels everyone should honor her wishes. However, you as the caregiver will need to be able to plan and that means your sister has to sign a form granting you access to her medical information. And this is different from medical power of attorney. Just ask to be put on her face sheet.

I know it's way easier said than done, but don't jump to alarming conclusions until you have to.


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## Anon Pink (Jan 17, 2013)

Also, you absolutely can sit in via phone and you should ensure your sister, and whoever will be with her, can advocate for doing this. 

Who will be attending this upcoming appointment with your sister?

It might be prudent to talk with you sister about how much she wants to know. I asked my sister right after she was diagnosed and she said she didn't need to know everything. The next 4 years consisted of her having a great deal of hope because she felt okay, and had no idea how bad it was. I am convinced she wouldn't have lasted as long had she been made privy to the reality.


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## Hope Shimmers (Jul 10, 2015)

Well, except they have a treatment plan. A right colectomy. Which means they have already biopsied the tumor cells and have determined that they are (probably) carcinoid cancer of the appendix.

Most tumors of the appendix are found basically by accident, usually because of appendicitis (like in this case). These are usually asymptomatic so there are no signs of symptoms that the cancer is there.


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## Pluto2 (Aug 17, 2011)

Update:

Sis didn't want me on a phone, she's older than i and thought she could handle the appointment (family....)

No lymph nodes were taken during the appendectomy, since it still presented as a simple appendicitis. He told her no visible tumor was seen. 15 of 16 sections of the appendix had goblet cell carcinoids. The surgeon told her the standard recommended treatment was the right hemicolectomy and lymph nodes. He has never treated appendix cancer, but has done this surgery for colon cancer 4 or 5 times a month. She has to go to her PCP to get a referral to an oncologist, and her PCP (very accommodating) will see her tomorrow for that. She was told that if the lymph nodes test clear, she should be ok. If the lymph nodes show goblet cells, then she's a candidate for chemo.


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