O/T...Sort Of...Things Come In 5's - Appendiceal + Prostate Cancer - Update

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bitchslapped
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O/T...Sort Of...Things Come In 5's - Appendiceal + Prostate Cancer - Update

Postby bitchslapped » Wed Oct 11, 2017 9:10 pm

Hi Folks, This is kind of a continuation of my "They Say Things Come In Three's" thread for those of you that tuned in for that one. Well, there's more.

This is about my BFF in the whole wide world, 52 years of friendship (are we that old, or were we that young?). I guess it's both. Friends since 7th grade when she was new to the school. She tells me I was the first person that was nice to her which still warms my heart. Anyway, in the other thread I mentioned her DH had a cardiac "event" on the freeway offramp in June of which he luckily survived. These two carried me through the anguish of caring for my mother & DH.

BFF had laparoscopic removal of cancerous appendix yesterday, mets to peritoneum, "carcinomatosis of peritonei". Pathology w/b about a week out. Shock is an understatement @ this point for me & her DH. She already knew a week ago in her heart of hearts.
She has been going from dr to dr, test after test the last couple of months, bloodwork (CEA normal), CT scans showed couple of small lesions in peritoneum, PET scan showed nothing. One doc, the last one who did the surgery noticed "something" re: appendix. She's had 2 CT's in 2.5 months, ultrasounds, gynecological surgical oncologist, gastro doc, ER doc, her PCP doc, another surgeon, etc.

I believe we have/had some members w/appendix cancer or anyone familiar = I am interested in hearing your story, thus the reason for a separate thread. Appendiceal cancer very rare; less than 1000 cases per year in the USA.
HIPEC is cautiously on the table for consideration.

There's not a lot out there on this cancer. Don't know if immunotherapies/targeted therapy, newer drugs are available or in the works; then one needs to consider clinical trials these days too.

BFF will self advocate & researching the internet w/me as cohort, yet she is very much concerned, aware how her DH is handling this.

From what I'm reading so far, it appears that b/c not too much known on this type of cancer that colon cancer therapies are followed...maybe.

I've got some homework to do, but this forum is my "go to" place @ times & I'm thankful for that & my friends here on CT.


BS
Last edited by bitchslapped on Wed Nov 08, 2017 8:02 pm, edited 2 times in total.
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

Canada777
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Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby Canada777 » Wed Oct 11, 2017 10:34 pm

Hi - so sorry to hear about your friend. My partner has appendix cancer with peritoneal mets. He did HIPEC. At first they thought it was colon cancer...only during surgery did they realize it was likely from appendix. Later testing proved that assumption correct. We've been told that because not much research is done on appendix cancer (quite rare) they treat it as they would a colon cancer. There are a few research studies I found...but that's it. He was told his cancer is "appendix adenocarcinoma " . He started with FOLFOX and now he's onto FOLFIRI. If you manage to find any new information let me know!
BF dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX Jan-June 2016
4 month chemo break. Still only Peri mets.
Successful HIPEC Oct. 2016. Diagnosis changed to appendix cancer.
Recurrence to pelvis. FOLFIRI starting Sept 2017.

Brearmstrong
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Location: CT

Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby Brearmstrong » Thu Oct 12, 2017 6:56 am

So sorry to hear of your BFF's diagnoses... heavy heart here... I too have appendix cancer (mucinous adenocarcinoma) and the tumor started in my appendix and invaded into the colon wall. You can see the rest in my signature. Because mucin or peritoneal mets weren't yet found during surgery or after biospies of my omentum, HIPEC wasn't on the table for now. Yes, you are correct that when it hasn't turned into PMP (which is sounds like it already has for your BFF) than it is treated like colon cancer and 12 rounds of folfox or equivalent is usually the first step in trying to beat it. It sounds to me (i am not a dr) that they should really be pushing for HIPEC and debulking. I'm not sure where you are located but there are great drs in Baltimore (Dr Sardi) and Pittsburge (Dr. Barlett) and a team at MSKK. MD Anderson in Texas is also on the fore front of treating appendix cancer. I am not being seen by any of these drs currently but follow their work and success stories. IF mine spreads than I will go to MSKK for treatment as currently I must stay within my insurance network which keeps me at Yale Cancer Center (which is wonderful and I have nothing but great things to say about my surgeon and oncologist) but I will fight to get to MSKK if I need to in the future (let's hope I stay in Nedville FOREVER). I wish you both the best and happy to give you more information if needed. I must admit that I've heard hundred of case studies and have done WAY too much research on appendix cancer.
:cry: 45 Female Jan 2017 after appendectomy
DX: (CC) tumor started in appendix and went through colon wall
Adenocarcinoma w/ mucinous features 4.1cm
mod diff G2 T4aN2
Stage IIIC
nodes 8/50
CEA 4.6 after surgery < .05
margins clear
No mutations
FOLFOX Apr-sept 2017
Clean CT scan Jul 2017 watching one small lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1.
Oct 2017 clean CT 4mm lung nodule stable, new 2 mm nodule.
Nov 17 PET shows para aortic nodes uptake. Stage IV :(

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peanut_8
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Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby peanut_8 » Thu Oct 12, 2017 10:45 am

Really sorry to hear about your friend BS. She's lucky to have you as her friend, just as much as you're lucky to have her. Does anyone do HIPEC close to you?

peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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Maia
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Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby Maia » Thu Oct 12, 2017 8:04 pm

BS, so sorry to hear about your dear friend. Where --area/state-- is she treated? Is she able/ willing to travel for treatment?

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CRguy
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Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby CRguy » Thu Oct 12, 2017 9:59 pm

Hey BS
I am with peanut and Maia in sending good mojo to your BFF and
sorry that is the sitrep ...... but no experience to share with you.

Keep us in the loop
WE are ALL ONE here and your many homies will be here to have your back
and get you some good info for your friend.

Harmony
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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bitchslapped
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Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby bitchslapped » Sat Oct 14, 2017 4:06 pm

Thanks guys for your stories, support.
Her location is Portland, OR area = OHSU (Oregon Health Sciences University) which is a designated NCI comprehensive cancer center, however some locals liken the in-hospital after-care to that of a VA hospital. HIPEC is in its infancy there, only 4 yrs. She is willing to travel, however insurance networks are always a problem state to state in the USA. If tx is available within 50 miles of your home, then that's where you go unless she decides to go out of network or challenge it.

She's healthy aside from this, yet asks herself if @ 64 is she up to this (HIPEC) + what else? QOL important to her.

I am getting crosseyed from all the reading. Here's the bottom line:

Medical Establishment, Research all the way through Pathology confused about dx of the multitude of appendix cancer cell biologies (I'll put it that way) = pick a grade, pick a tx! Uniformity = 0. Somewhere I read new grading guidelines published "who knows where" this Sept......I guess b/c this is a rare cancer, some using 2 stages, some using 3 to stage...some combining well-differentiated w/moderately differentiated, some combining moderately-differentiated w/poorly differentiated :shock:
When she receives path report, my recommendation to HER is to ask her doc about 2nd path opinion, especially if done @ an independent lab, as per the below article, preferably @ a teaching institution.
For those of you interested:
https://health.ucsd.edu/news/releases/P ... nosis.aspx

It took 2 months to get a dx, test after test, doc after doc. Nobody saw something on her appendix except the liver/pancreatic surgeon. Not the 2 gastro docs, 1st surgeon, not even the surgical gynecological oncologist who has accepted a professorship or assistant professorship (not sure) @ University California, Davis (UC Davis!). He did tell her he thought she had something else going on (gastro doc did dx gastritis, so he was correct), but he did not think she had cancer. He recommended she have another CT in 6 mos & if she did need surgery to go to a liver surgeon as one of the lesions was in close proximity to the liver. So that was good advice, but waiting 6 months = not so good.

I found these links which may be helpful for some of our appendix patients:
https://www.uptodate.com/contents/cance ... -peritonei
https://acpmp.org/about-acpmp

This Inspire Community thread helpful in aftercare to HIPEC, though nobody tells the whole truth, nothing but the truth:

https://www.inspire.com/groups/appendix ... ga=freshen


BS
Last edited by bitchslapped on Sun Oct 15, 2017 12:26 pm, edited 1 time in total.
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

DarknessEmbraced
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Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby DarknessEmbraced » Sat Oct 14, 2017 5:34 pm

I'm so sorry about your friend's diagnosis!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

zx10guy
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Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby zx10guy » Mon Oct 16, 2017 12:52 am

Appendiceal cancer is a very sinister disease. I won again with the cancer lottery when I was diagnosed with appendiceal cancer as my second primary last year. I had a clear CT just before seeing my oncologist for a routine 3 month checkup. My blood work was done during this visit and we discussed when he was going to cut me loose from being monitored from my first primary of stage 3b colon cancer. I got the results of my CEA test and it was way elevated...almost to the levels I had when I was first diagnosed. A retest confirmed the elevation. A PET was ordered which showed nothing. Later the PET images were reviewed again by the radiologist my CRC surgeon uses. Both said the hot spot I saw on the scan image was not cancer. But it coincidentally it was near where my appendix would be. The last tool I had was a colonoscopy. I was due anyways. During the colonoscopy, my GI just happened to see the polyp in the appendiceal opening when my colon had shifted. It was a chance thing for my GI doc to be looking at that location to see the polyp pop out. Biopsies done showed high grade dysplasia. Surgery was done (right hemicolectomy). Pathology comes back and confirms I have appendiceal cancer. Stage 0 in situ. So we happened to just catch it before it had the chance to take off.

My GI doc was telling me about a doctor he knows who was also diagnosed with appendiceal cancer. In this situation, everyone thought he had appendicitis. They realized during surgery it was not appendicitis. Pathology comes back and he's stage 3.

Sometimes I wonder if it should be SOP that when they're in your abdomen doing laparoscopic surgery to just also remove the appendix. If they had done this when I was first diagnosed, I wouldn't have had to deal with the headaches of last year.

alphagam
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Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby alphagam » Mon Oct 16, 2017 2:57 pm

Not cancer but spent most of a year talking to Drs about abdominal issues including pain, but not extreme pain. Finally, a surgeon ordered an ultrasound and scheduled gallbladder removal AND an appendectomy. Not only was my gallbladder toast, but path showed I had acute appendicitis! So thankful surgeon removed both!!!!
Dx Feb 2010 4 cm tumor, just inside rectum
EUS stated T3 tumor
2nd opinion, need better path
Mar 2010 transanal surgery. Surgery by board certified CRS found tumor only in lining
6 exams of surg site, 3 PET, 3 scopes laterNED.
Scope in Mar2015, clean colon
Next scope/test in 3 years

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bitchslapped
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Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby bitchslapped » Fri Oct 20, 2017 10:01 pm

It's amazing, the close encounters of the weird kind, near misses people experience (to my last two posters).

It's been a whirlwind of a week trying to get up to snuff on appendix cancer. What a mess. I'm cross eyed from extensive computer research for a dx w/o pathology.
Speaking of pathology, it was about as anti-climatic as it can get imo. Reminded me of an 8th grade book report, but a lot shorter.

Bottom line: low grade mucinous neoplasm, 2cm, 0 LN + mucinous carcinoma peritonei. That's as good as staging gets. Controversy among medical community on how to classify, stage. I've read that Jan. '18 they will adopt a 3 stage classification vs 2 stage of low or high grade. Yes, it's as simple as that right now. Moderate grade is combined w/either the low or high, depending on pathologist. Not so simple to read a shit load of material to discover that...yes it is true. :roll:

My head is spinning. Going to get me a glass of wine right now. Maybe it'll straighten my eyes out. :shock:


BS
Last edited by bitchslapped on Sun Oct 22, 2017 4:59 am, edited 1 time in total.
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

macpudd
Posts: 55
Joined: Tue Jul 21, 2015 7:00 pm

Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby macpudd » Sat Oct 21, 2017 10:53 am

Hi Bitchslapped,
When I was diagnosed with my primary cecal tumour I was told I also had an incidental finding of a six cm low grade mucinous neoplasm of my appendix which combined with the seven cm primary had blocked my bowel. As my surgical margins were clear the oncologist said that Folfox would mop up any stray cells from both tumours. The surgeon said I was very lucky that the appendix tumour had not burst, she described it like a seed pod ready to explode.

Regards
Mapudd
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
cea pre surgery 1.6 after .6

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bitchslapped
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Re: O/T...Sort Of...Things Come In 5's - Appendiceal (Appendix) Cancer - Update

Postby bitchslapped » Thu Oct 26, 2017 4:42 pm

Been in deep research re: HIPEC this entire week, reading, watching videos of HIPEC operations, conferences, you name it, to help my BFF w/her decision making...that I could probably assist in the procedure @ this point. More on that later re: my own conclusions. BFF's CT summary 2 yrs ago mentioned a "cyst" on her appendix. Really??? Why don't we just let that one go for the heck of it. Do we all have to be damn doctors?! Can't we just be patients? With all of the advances in imaging, tx today we hear too much of this going on everywhere. Are we really better today considering all of the technology, or are we expecting the technology to interpret itself?
BFF + DH fly to UCSD for HIPEC consult this coming Mon. for Tues appt. At least that was the plan till about an hr ago...don't stop reading.

At this time I am about to flip over the top, Honest to God I am not kidding.

BFF's hubby rushed appt to oncological surgical urologist due to PSA blood result (over 100...is that even possible?! Like 111, 130, I don't remember as I'm rattled right now) to the moon & back that new family doc had ordered. I thought it must be a decimal point lab error. Specialist is positive he has St4 prostate cancer, stating he may quality for a clinical trial. Are you kidding me? Can you tell that much from digital exam (assuming he did one). She emailed short message from doc's office a short while ago). Awaiting CT + Pet bone density tests. No needle biopsy due to heart attack in June.

So who do you treat first, him or her? Unreal.

I've got to get outside & do something physical b4 I explode.

Thanks for those sharing their stories. I have found it interesting.

BS
Last edited by bitchslapped on Thu Oct 26, 2017 7:22 pm, edited 1 time in total.
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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peanut_8
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Location: Capital of Texas

Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby peanut_8 » Thu Oct 26, 2017 5:38 pm

Wow, that really sucks. Don't really know what else to say. Stupid Drs.

Hope they're able to come up with a plan.

hugs
Terri
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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Robino1
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Re: O/T...Sort Of...Things Come In 4's - Appendiceal (Appendix) Cancer - Not Me

Postby Robino1 » Thu Oct 26, 2017 6:31 pm

Oh god!

That poor family! Prayers for all. I can see why you are rattled {{Hugs}}
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(


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