Appendix?

Anonymous · August 2017

I am 12 years NED. Yeah! I recently had a CT as a check up on uterine fibroids (because a vaginal exam had grown too painful to tolerate and no one understands why). The radiologist called my doc in a panic and my doc called me within 1 hour of finishing the CT. She told me to call the on-call doc to get my results that night because she had "some recommendations" for that evening. I didn't, because I am not an alarmist and I assumed she was just going to tell me to hydrate to get the contrast iodine out of my system.

I went to work the next day and checked messages at lunch and had calls from doc again (call us!). When I called, they said to get to the emergency room and get myself checked in. WHAT? She said the CT showed a mass on my appendix and possible tumor. OK, I'm not in a panic; why are the docs? I admit to a bit of panic that showed in my blood pressure when I went to ER. I felt stupid because I felt FINE. While I'm sitting in an ER room in a gown, I get a call from my doc to say "Oh, nevermind - we've made an appointment with a general surgeon for you next week. No need to go to ER." Aaaarrgh! I assume (although they never told me), that they were concerned my appendix might burst - but who knows.

So I went and got a copy of my report and it says a concern for a soft tissue carcinoid tumor on my appendix. Appendix cancer is VERY rare (1000 in the US per year). So this has me concerned it could actually be BC mets instead, and it sounds like I won't even have a biopsy for awhile.

My question is - does anyone have else have mets to the appendix? That seems SO RANDOM!

bevin · August 2017

I am stopping by to give you some support. I have never heard of this and am hoping you can get into your doctor sooner. Hopefully someone will be by with some guidance and input. Good luck and keep us posted.

ChiSandy · August 2017

Carcinoid tumors are the most common malignancies of the lower GI tract, including the appendix. They grow very slowly and chemo isn’t recommended. The treatment? Surgery. The good news is that most doctors believe nobody needs an appendix, so if anything goes blooey with it, remove it. (A few believe it might be a storehouse for beneficial gut biome flora, but taking a decent probiotic and eating probiotic fermented foods can fulfill the same function).

KBeee · August 2017

I agree with what ChiSandy said, except to add that MOST carcinoid tumors spread slowly. I add that because I had a friend (not BC) and that was not the case. I do know 2 others who've had carcinoid tumors, and they were very slow growing. That being said, you do want it out soon, a biopsy to confirm it, and need to be checked to be sure it has not spread.

Hoping you get answers soon. Keep us posted.

Anonymous · August 2017

Thank you all for responses. Having cancer experience before, I know that I am very early in my "adventure," and I do not intend to borrow trouble until I have biopsy reports, yet I don't even see the surgeon for my first consult for a few more days and all my BC sisters recognize the waiting is the hardest part. My research has told me that carcinoids CAN certainly be a type of cancer that is easy to treat, but it all depends on the pathology as it can also be an aggressive cancer. My concerns are, because appendix cancer is so rare that it might be mets. I know that only time and a biopsy will tell, but I wish this hadn't started with such a crazy panic to get me to an emergency room. I am in the middle of a bad situation involving a job (have not been healthy enough to work full time for years--long story), and insurance, so I guess I was just looking to fill the long wait with stories or info that might be helpful. Of course I am still hoping for good results, but I googled this radiologist and he has a ton of experience and fought his own cancer battle so I'm guessing he is good at his job. I am so thankful for the day a BC nurse told me about this site. It is where to get the unfiltered truth because we know we can take it. Thanks all and best to each of you in your journeys.

ChiSandy · August 2017

It’s extremely unlikely for the appendix to be a mets site for breast cancer. Appendix tumors are not as rare as one might suppose—and they are primary tumors. Carcinoid tumors are histologically distinct from carcinomas.

Regardless, if I were you I’d ditch that appendix now if at all possible, have it biopsied, and deal with the finances of it later. The appendix is less essential than are the gall bladder or tonsils & adenoids.

Anonymous · August 2017

Yes Sandy, I am well versed in anatomy and the various types of benign and malignant appendix findings (including carcinoids specifically), but thank you for your input. I will be letting my docs do their job in deciding things like biopsy, appendectomy, etc. (first surgical is 8/31) - but I was just looking for anyone else with a similar situation. Thanks again.

ChiSandy · August 2017

Best of luck for your surgery Thurs., whatnow. As we say here, we’ll be “in your pocket” (with you in spirit) as you go through it. Keep us posted as soon as you feel up to it.

Sara536 · August 2017

I know this is off-topic but it brings up one of my fears which is: having a few cancer cells dribble out of the biopsy needle on the way out through healthy tissue. That is why I had no trouble choosing to do whole breast radiation after lumpectomy. I know that doctors claim that can't happen but I put them in the same category as MOs who act surprised when their patients report debilitating SEs with AIs. For the same reason, I would opt for appendectomy instead of biopsy in the above mentioned case. I also don't see the point of hanging onto a uterus that is full of fibroids when you already have one or two cancers and are way past menopause (but stay away from the morcelator!). The wait-and-see attitude can b a bit risky.

Appendix?

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