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Appendiceal Cancer

Sabradee's picture
Sabradee
Posts: 6
Joined: Apr 2013

I am 51 and after going to the ER for Appendicitis I found out I had a 10cm mass on rt ovary, and shadow or lesions on my liver. I had surgery with a gyn/oncologist at Duke yesterday who quickly found out it was a mucinous appendiceal cancer that had encapsulated my ovary. They removed both ovaries, tubes and appendix which was cancerous. They found pepper spots on my abdominal lining and a couple small burn like marks on my liver. They called in a GI oncologist who told them not to take anything else out at this point. He said they rather do chemo treatments first and then go back to take the margin of large intestine and do the perineal wash to get the cells left in the abdomen. They did how ever biopsy the liver. My appointment with GI oncologist and surgeon is wed Apr.24 to find out staging/path reports and treatment schedule. I can't find any info offering hope or a good prognosis for this type of cancer. I feel like i'm in a hole and not matter where I turn there is no rope to pull myself up. It is like a roller coaster ride. A little hope, bad news etc. Can anyone share personal knowledge or reports offering any good or uplifting information. I'm tired of just reading the negative. Thanks so much for any sharing!!!

SabraDee

Ruffy7
Posts: 126
Joined: Sep 2011

Sorry you are going through this...  my appendix cancer was caught very early (during my first screening colonoscopy).  So far, surgery was the only treatment though I'm seeing my oncologist every 6 months for checks.  You need to find a specialist who has dealt alot with appendix cancers.  A lot of other good oncologists treat it like colon cancer and the treatment for the 2 cancers is not the same.  There are several specialists in the country who you could at least ask for a second opinion.  Where are you located?  It is well worth it to do the travel to get someone who knows how to treat this cancer.  Some drs are Paty (Sloan/Kettering, NY), Mansfield (MD Anderson, Texas), Alexander (UM, Maryland), Lowey (California), etc..  Check out the list on the PMP cancer site.  Good luck..  There is always hope! :)  Ruffy

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

GI oncologists will group Appendix cancers with colon cancers, and treat them as such.  Appendix Cancer specialists (who are few and far between) recognize the difference, and treat appendix cancer as such.

Mine, too, was found as a tumor encapsulating my ovary (during a hysterectomy).  My gyn called in an onc surgeon at that point to help with the surgery, then closed me up after removing as much visible cancer as possible.  I then found Dr. Paty at Memorial Sloan Kettering in NYC.  You can read my story if you click on my name.  I am 6 years out from diagnosis and doing great.

Dr. Levine, at Wake Forest is another expert; if you are going to Duke, this might be a closer option than some of the others.

The one thing that I cannot emphasize enough is that you need to see an Appendix Cancer Expert.  No one else can give you the same results.

Alice

Sabradee's picture
Sabradee
Posts: 6
Joined: Apr 2013

Hi Ruffy and Alice,

Thanks for your response.  I don't really know where I stand at this point. Duke told me yesterday that the pathology is not back yet but they spoke to the pathologist and they believe I have Stage IV high grade appendiceal cancer and it is aggressive. My liver studies/labs and ca 125 were all normal and so was my white/red blood cells. Also liver biopsy *there are 6 lesions, came back negative. The doctor feels that the surgeon did not get the right spot and is sure it has metastisized so i had a needle biopsy done yesterday at Duke along with chest xray. There are 3 small nodes on lung so small you can barely see so they do not know what they are. I am waiting for pathology report from appendix,ovary along with new liver biopsy for a final determination. As of now they say threre is nothing they can do except systemic chemo and hope it keeps it at bay for 1+2 years. Unsatisfied I have forwarded all my info to Dr. Fourtnier at MD Anderson who has emailed me with a willingness to review my case to see what he can offer as far as treatment. The Duke Docs are sure he will agree with them but I have to see for myself. I also had records forward to Dr. Shen and Levine at Wake Forest. I pray that with the good liver lab results and blood work that the biopsy will be negative again and we can get a better prognosis. 1+2 year is not enough! I would love to hear about if anyone else with stage 4, hgh grade muscineal has had better results and what treatment they got/where. It is a roller coaster with all kinds of loops and turns knowing you have cancer. I am a positive person with the love of God in my heart. There has to be some positive hope somewhere!

SabraDee

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

Duke does not have appendix cancer experts.  Wait until you hear from MDA or Wake Forest and their experts.  I had a top-notch GI oncologist who did not know appendix cancer assure me that what the appendix cancer expert had said was wrong, and I was going to be dead in 2-5 years (tops - 5 years).  Much as he assured me that I'd hear the same from the Appendix specialists, he was 100% wrong.  I'm now 6 years out from a Stage 4 dx, and doing great. 

Your best chances are to put yourself in the hands of one of the experts.  (I go to Dr. Paty at Memorial Sloan Kettering.)  I know that this is an incredibly stressful time that you just have to get through.  I hope that you can have the outcome that I've had.

Hang in there.  We're pulling for you!

Alice

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I too have appendix cancer.  I am going to see Dr Alexander and his group on May 7th.  I was fortunate that my cancer did not cause my appendix to burst...but it is still an aggressive form.  I have been through the 6 months of chemo.  Wait and see what one of the experts has to say.  We are starting at the univ of MD ... But may also go to MDnAnderson or Dr Sardi in Baltimore.

alex

jrh1212
Posts: 6
Joined: Aug 2012

Hi SabraDee,

I, too, have Stage IV Appendiceal Cancer, it is poorly differentiated, signet ring cell -- basically a very aggressive form.  I am still in the middle of my journey... Mine was discovered July 2012 during a routine partial hysterecomy.  My GYN thought my ovary looked "funny" so she took it, pathology came back as a Krukenberg tumor (a secondary site)... so after several tests, primary was determined to be appendix.  Research suggested getting to a specialist, which I did.  They attempted CRS/HIPEC in Aug 2012, but when they opened me up, they found way more cancer then they anticipated.  They removed the apendix and did a right hemicolectomy, closed me up and recommended 12 weeks of Folfiri/Erbitux.  A CT Scan and a laproscopic surgery in Jan 2013 showed the chemo was working but not enough to reconsider CRS/HIPEC.  So I did 12 more weeks, this time with FOLFOX/Avastin.  Another CT Scan and laproscopic showed that this chemo was a bit better and am I now scheduled for CRS/HIPEC for May 21st.  If successful, it will be followed up with 12 more weeks of "mop up" chemo.

When I was diagnosed, I joined a facebook support group specifically for Appendix cancer, https://www.facebook.com/groups/PMPAppendixCancerSupportGroup it is a closed group, just request membership.  The members there have a ton information/experience.  I have heard of several cases of long-term survival of those with high grade appendiceal cancer.... those cases give me hope that I can be one of them.

It sounds as if you are on the right track, getting yourself to see a specialist.  Meanwhile, there is a web site www.appendix-cancer.com that is run by a women who is an 11 year survivor of appendix cancer (she also had an aggressive form).  There are some long term survivors out there, so stay strong!

Good luck with your journey, and if I can answer any questions, please let me know.

Jenn

Sabradee's picture
Sabradee
Posts: 6
Joined: Apr 2013

I appreciate everyone sharing their story about this awful disease. I have been through slot and failed to keep an update and I would love to hear back from all of you with your news. I chose Dr. Fournier at MD Anderson and he is absolutely wonderful. Last week I finished my 6 3day treatments of folfiri. No serious side effects. Just your normal fatigue,nausea, and diarrhea but even these aren't bad. I developed chemo arthritis too. Lost 3/4 of my hair but ponytail hides the balding. I went to Texas for all my scans last wk. The liver mets had shrunk tremendously so we were praising GOD. I have 7 in lower lobe and 1 in top. Dr. Forniers plan is 6 more treatments of folfiri and rescan. If scan shows as much shrinkage as the past one he will discuss resectioning my liver. He will take bottom lobe out and do direct infusion to single tumor in top lobe. Then maintenance chemo tobuy me more time. He won't give me statistics he says GOD only knows. This is why I chose him. I have no lung mets or lymph node mets thank you lord. Debunking and belly wash is not an option with liver mets. I feel good except the 5-6 days. Please send me more infoonhow all of you are doing!!!

jrh1212
Posts: 6
Joined: Aug 2012

Hi SabraDee,

I, too, have Stage IV Appendiceal Cancer, it is poorly differentiated, signet ring cell -- basically a very aggressive form.  I am still in the middle of my journey... Mine was discovered July 2012 during a routine partial hysterecomy.  My GYN thought my ovary looked "funny" so she took it, pathology came back as a Krukenberg tumor (a secondary site)... so after several tests, primary was determined to be appendix.  Research suggested getting to a specialist, which I did.  They attempted CRS/HIPEC in Aug 2012, but when they opened me up, they found way more cancer then they anticipated.  They removed the apendix and did a right hemicolectomy, closed me up and recommended 12 weeks of Folfiri/Erbitux.  A CT Scan and a laproscopic surgery in Jan 2013 showed the chemo was working but not enough to reconsider CRS/HIPEC.  So I did 12 more weeks, this time with FOLFOX/Avastin.  Another CT Scan and laproscopic showed that this chemo was a bit better and am I now scheduled for CRS/HIPEC for May 21st.  If successful, it will be followed up with 12 more weeks of "mop up" chemo.

When I was diagnosed, I joined a facebook support group specifically for Appendix cancer, https://www.facebook.com/groups/PMPAppendixCancerSupportGroup it is a closed group, just request membership.  The members there have a ton information/experience.  I have heard of several cases of long-term survival of those with high grade appendiceal cancer.... those cases give me hope that I can be one of them.

It sounds as if you are on the right track, getting yourself to see a specialist.  Meanwhile, there is a web site www.appendix-cancer.com that is run by a women who is an 11 year survivor of appendix cancer (she also had an aggressive form).  There are some long term survivors out there, so stay strong!

Good luck with your journey, and if I can answer any questions, please let me know.

Jenn

Sabradee's picture
Sabradee
Posts: 6
Joined: Apr 2013

I hope your surgery went well. Please let mecknow your updates! It is good to hear from others going through the same journey/:)

Sabradee's picture
Sabradee
Posts: 6
Joined: Apr 2013

I hope your surgery went well. Please let mecknow your updates! It is good to hear from others going through the same journey/:)

Misbetty
Posts: 3
Joined: May 2013

Hello,  My mom is 67 and she was diagnosed in 2008,  with her first surgery she had a complete hystorectomy,removed a tumer that was on the right ovary, the omentom was removed, and her appendix. The doctors thought at first it was ovarian cancer until the biopsy came back that it was appendical (aka. Jelly belly) She was stage 4. She tried chemo but for her nothing was helping and she said she didn't want try keep putting herself thru anymore chemo. 2010 she had another debulking surgery. The doctors scrapped out as much as they could and removed the gall bladder. This March was surgery #3. Again debulking, removed her colon, part of her stomach. The doctors routed things to where she didn't have to have a colostomy bag. Overall the surgery went well  its just her getting on track and getting her stools firmed back up. We would love to hear from anyone that has had their colon removed. We are from Kentucky and mom had her surgeries at University of Kentucky.  we heard about the  heat chemo but we and mom along with her doctors decided against it. 

I hope not to give you any negative vibes, I'm not the one with the cancer but I have been with mom every step and have some idea what emotional rolla coaster you have been on. After her first 2 surgeries she bounced back and you wouldn't even think she had cancer. This last surgery was more intense but we think she has done great. 

In our prayers

Melissa

doctorc
Posts: 12
Joined: Mar 2012

Hi Sabradee, my wife and I still at MDA in Houston.  Dr Kieth Fournier you mentioned...he is an angel from God.  surgery April 5, 13.  now out of hosp, still here.  she got out 5 days early. good labs, etc.  22 hour surgery. yeah, longest he had ever done.  but got 98% of tumor and HIPEC chemo gets the rest.  Praise God!  best of all to you. Note to your caregiver: become a nurse.ha. watch closely to draining, GJ tube flushing, draining, etc.  you will be doing this three wks after surgery!  Ive got it.  its a system.  and timing .  if she is nausaeated, drain IMMEDIATELY, even if 3 am !  she is doing pretty well, some issues are normal, diarreah, nausea.  be patient.  like dr F said this is a marathon not a sprint.  God Bless.  hope surgery goes as well as ours. His patients typical after HIPEC survival is over 10 years.  Our Best to you.

jrh1212
Posts: 6
Joined: Aug 2012

Hi Sabradee, sounds like you got yourself in great hands!  I've heard wonderful things about Dr. Fournier.  It also sounds like you and I are on similar (but different) pathes.  While I don't have liver mets, my cancer is sprinkled throughout my small intestine and on my small mesentery (2 very difficult areas to treat).  But I will be going the maintenance route too.

I had the CRS/HIPEC surgery in May, and it was a good news/bad news surgery.  Good news, they were able to do the heated chemo (HIPEC), bad news was they were not able to remove all the visible cancer.  My surgeon had to leave some "very small" spots on my small mesentery, but she was hopeful that the chemo I'm doing now would take care of it.  Right now I'm about to do #5 of 6 Folfiri/Avastin "mop up" chemo.  Once I finish, my oncologist has said that they will be moving me into a maintenance chemo indefinitely.  I'll know for sure what his plan is in a few weeks.

So I'm going with the attitude that this is a chronic condition that I have to treat, much like a diabetic (etc)... just instead of insulin, I need chemo.  I've heard of people being on the maintenance chemo for several years, keeping things stable and in some cases, killing it.  I'm hopeful that this route will give me several more years and that some thing better will come along and/or I'll be able to attempt the CRS/HIPEC again.

Let's keep in touch as we travel this "maintenance" road, and may we get a very long time out of it!

Jenn

 

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I am doing well... I had a laparoscopic surgery in July of 2013. ... A little over a hear after my hemicolectomy and 6 months if Folfox.  I have also had several scans...my last one was in December... I am currently NED.  My CEA is back within the normal range and my scans look good.  I do have abdominal and back pain every day... But there is no known cause.  It could be adhesions...the Drs are not sure.

 

I hope everyone else is doing well.

 

alex

jrh1212
Posts: 6
Joined: Aug 2012

Hi Alex,

 

So glad to hear things are going well!  Things with me are status quo.  I had my surgery last May and finished with the mop up chemo in Sept 2013.  My surgery was incomplete, so they placed me on maintenance chemo (5FU and Avastin)... I just finished my first 6 months on it, had a CT Scan (locally with my local oncologist) a couple weeks ago, that showed no changes.  I'm meeting with my appendix cancer specialists next week, so I'll be interested on their take too.  I can't say I'm NED since I know they left some in their, but I'll take no changes at this point.  If I find out anything different, I'll be sure to update.

 

Meanwhile, I hope everyone is doing well!

 

Jenn

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