Awaiting Pathology

[Emm3rs]

Hello there . I have been furiously scouting the internet for answers since I woke up from surgery. I went in for appendicitis as a laparoscopic surgery and woke up with lap and open and a partial right hemicolectomy.

The surgeon said it was the largest appendix he has ever seen and that he felt a mass in it. So he decided to take a few inches of my cecum and small intestines Incase the pathology came back malignant.

It’s been 8 days since surgery, I’m home. Eating, drinking, pooping and tooting but I have some questions.

1. Has anyone ever heard of this before and if so, do they ever come back benign?

2. I stopped taking pain meds besides Tylenol 12 hours out of surgery, I don’t like the way they make me feel. And now I have this ache in my right side and under my ribcage on the right side. Suggestions? I’m still taking Tylenol

3. Do I need additional lab work done?

4. I see the surgeon Monday to take out my staples. I’m going to ask if they took any lymphnodes out but what other questions should I ask?

I’m 34/f besides Hashimotos I’m healthy. This all came as a big shock to me and I’m having a hard time dealing with it. I keep feeling weepy because I feel like it’s almost certain it’s going to be malignant. Ugh please someone help.

[Brearmstrong]

Hi Emm, I had a similar experience and a week after lap appendectomy, I was diagnosed with appendix cancer. I had a second surgery and 12 sessions of folfox chemo. That failed as I am dealing with a recurrence just 8 weeks after ending chemo.... so things to ask:
If mass is cancer, what type of appendix cancer. There are several types and some easier to treat than others. Did they do genetic testing on the mass and if yes, what tests? There are a dozen or so drs around the country that are equipped and experienced with appendix cancer. It can behave differently than colon cancer so I urge you to seek them out if it comes to that. I am going to Sloane Kettering in three weeks to see if I qualify for HIPEC which is the standard of care now for appendix cancer. Here's to hoping it turns out to be nothing! Send me a message if you have more questions. Try not to worry. I know that's hard. - Brenda

[zx10guy]

I'm sorry to hear from you both about this. I'm also an appendicial cancer survivor along with colon cancer. As much as we're being told this is a rare cancer, I find it interesting I'm hearing from more and more people about this disease. I got lucky as mine was caught really really early. It was accidentally discovered during a colonoscopy. The scope just happened to be pointed in the right direction at the right time when the polyp popped out of the appendix. I had a right hemicolectomy and pathology staged me at stage 0.

A doctor at my GI's practice went in for what they thought was appendicitis which later turned out to be stage 3 appendicial cancer. There's a person on the American Cancer Society's colon cancer forum who was initially diagnosed with appendicial cancer. Her screen name is abrub. Not sure if she's on this forum or not. She is active on the ACS forum. And there's a Facebook group that's dedicated to appendicial cancer called PMP Appendix Cancer Support Group.

Brenda provided a lot of good advice and information. I would think since they did a right hemicolectomy on you that lymph nodes were automatically taken out. Brenda is also correct that if this mass does turn out to be appendicial cancer, that you need to seek out specialized care for it. Most oncologists will run you through standard colon cancer protocols.

Hoping you get good news.

[O Stoma Mia]

For your information, there is a pathology report template for "Protocol for the Examination of Specimens From Patients With Carcinoma of the Appendix" from the College of American Pathologists. You might try to access that if it turns out that the mass is indeed a malignancy.

Also, here is a link to a post about an unexpected mass found during an appendectomy:

https://www.researchgate.net/post/Unexpected_Cecal_Mass_during_Appendectomy-What_can_I_do_now

[Emm3rs]

Worst fears came true. They called with pathology late yesterday.

Stage 1 low grade mucinous neoplasm largest section 4.5 cm. The part of the bowel they took out with it had clear margins and there was 2cm if healthy tissue surrounding the cancer itself.

So they got it all. They have me following up with an oncologist later this month. Im 34 and I’m deathly worried this will come back, what are my options?

[Pemba]

I understand your worries. congratulations on the stage 1 diagnosis.. I know cancer is nothing to congratulate but even though. it the best case of the worst cases kinda.

[NHMike]

Worst fears came true. They called with pathology late yesterday.

Stage 1 low grade mucinous neoplasm largest section 4.5 cm. The part of the bowel they took out with it had clear margins and there was 2cm if healthy tissue surrounding the cancer itself.

So they got it all. They have me following up with an oncologist later this month. Im 34 and I’m deathly worried this will come back, what are my options?

I had a look at Colon Cancer Treatment Protocols and for Stage 0 and 1: "Patients do not require adjuvant therapy". So you very well might be done. BTW, we are all worried that we will have a recurrence.

So we'll typically have blood tests, scans, colonoscopies on a regular basis for a while and then with longer intervals between tests as we get further away from the surgery and/or adjuvant chemo time periods. I'd guess that your oncologist will discuss this with you at your meeting.

Congratulations on getting it out of you and I do hope that you are cancer-free now.

[O Stoma Mia]

Worst fears came true. They called with pathology late yesterday.

Stage 1 low grade mucinous neoplasm largest section 4.5 cm...

Can you get a written copy of the pathology report? This is important because there are different kind of cancers that can be found in the appendix, and it is important to know the details of what they found.

It is also important to know which of the available appendix pathology templates they used for the report. This can help determine what the next steps of treatment would be. As someone has already mentioned, this may not be the same kind of cancer as colon cancer, and it may require a different approach to treatment.

[O Stoma Mia]

Worst fears came true. They called with pathology late yesterday.

Stage 1 low grade mucinous neoplasm largest section 4.5 cm...

Can you get a written copy of the pathology report? This is important because there are different kind of cancers that can be found in the appendix, and it is important to know the details of what they found.

It is also important to know which of the available appendix pathology templates they used for the report. This can help determine what the next steps of treatment would be. As someone has already mentioned, this may not be the same kind of cancer as colon cancer, and it may require a different approach to treatment.

It looks like your type of tumor is a very rare, controversial type requiring special attention:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3582328/
http://surgpathcriteria.stanford.edu/gitumors/appendix-low-risk-recurrence-mucinous-neoplasm/index.html

When they assign an oncologist to you, be sure they assign one who is a specialist in digestive disease cancers. You can usually check out their specialties by going to your hospital website, or by looking up the oncologist's name in http://www.healthgrades.com
.
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[hawkowl]

Although I don't have any advice, I did want to add some encouragement (especially for Brearmstrong): my cousin, who
lives overseas and is not on this forum (and also doesn't speak English) is now more than 3 years NED following treatment for stage 4 appendix cancer with peritoneal spread. Treated with HIPEC after resection and FOLFOX. She is on no treatment at all and is doing great. I am hoping you have a similar response!!