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Appendix cancer/ovarian cancer?

Ruffy7
Posts: 126
Joined: Sep 2011

I was diagnosed with appendix cancer in June 2011. Had surgery only. The thought was that it was caught early and hadn't spread. Been getting tumor markers and CT scans every 6 months. Last one was early Feb. 2012 - everything clear. I'm 52, had been having regular periods until the surgery in June when they all stopped completely. Then the end of Feb. 2012, started up again. Saw gyno who had ultrasound done, results: 4 cm mass in uterus, endometrial thickness at 7.23mm, and cysts on the ovaries. She scheduled me for a D&C and diagnostic laparoscopy on April 19. Anyone else here with appendix cancer who maybe had early signs of spread to ovaries/uterus? Trying to think positive, I know gyno is just being careful - which I appreciate - but this is still unnerving! Anyone else gone through this? Thanks, Ruffy

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Susan53
Posts: 178
Joined: Jun 2011

I was diagnosed with ovarian and uterine cancer 8-9-10, my gyn. did a D&C and laproscopic surgery. I had a tumor encasing my right ovary and it was removed laproscopicly. They also did a biopsy of my uterus at the same time. The path. report came back as cancer of both the uterus and ovary. I was sent to a gyn. / onc. to have a major debulking surgery done. The surgery was done on 9-8-10 and they removed my appendix along with my omentum and about 60 lymph nodes. That path report showed ovarian, uterine and appendix cancer. I was treated for the ovarian cancer with chemo . I was treated for the uterine cancer with brachy therapy which is internal radiation. I had another tumor board review my case and they decided that it would be best to just watch and see with the appendix cancer. My little appendix had 2 different cancers in it. It has now been over 1 year since my last chemo treatment and as far as I know I am NED. Ruffy if I might ask what type of cancer was found in the appendix . Wishing you the best and hugs to you. Sharon

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abrub
Posts: 1591
Joined: Mar 2010

Exactly (almost to the day - March 26) I had a D&C for similar symptoms, only my appendix cancer hadn't been found yet. My report from an abdominal MRI came to my dr's office during my D&C, so that's what made him decide to schedule me for a hysterectomy. Had the result come in an hour sooner, I could have skipped the D&C.I was then scheduled for a hysterectomy, and found during surgery that my ovary looked odd because it was encompassed by a metastatic appendix tumor. By the way, my appendix looked normal during my hysterectomy, but was removed because the frozen sections on my ovary showed a tumor of appendiceal origin. My appendix was half filled with tumor. It had probably ruptured at some time and fully healed.

Yesterday, I was speaking with a woman who had her hysterectomy for ovarian cysts, only to find appendix cancer.

Unfortunately, I have to say, yes, this is a common place of spread.

In your place, I'd get myself to an appendix cancer specialist, and see about them overseeing your next step. I'd lean towards a hysterectomy with an appendix cancer surgeon. (I'm in love with mine- Dr. Paty at Memorial Sloan Kettering.) Do not leave diagnosis of this cancer to a gyn.

PM me if you want further contact/more info. Been there, done that. 5 years post-dx, I'm doing great, despite the extensive abdominal/peritoneal spread of my cancer. Click on my name to see my story.

Alice

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abrub
Posts: 1591
Joined: Mar 2010

A thought I had while driving to work is that you want to avoid any additional surgery, even laparascopic, as every abdominal surgery makes the next one more difficult. You've had an appendectomy. At this point, you want to avoid adding new adhesions which would complicate matters should you need a major debulking.

I've had 3 abdominal surgeries. The 3rd (an incisional hernia repair) was very difficult for the dr as he had to work his way around and through a spiderweb of adhesions. My belly was "clean" in terms of scar tissue for the first 2 surgeries (hysterectomy and cancer debulking.)

Just an extra thought.
Alice

Ruffy7
Posts: 126
Joined: Sep 2011

Hi Alice and Sharon, thanks for your replies/concerns. I requested a copy of the ultrasound and (from what I can make out as a layperson), the mass is on the right ovary not in the uterus as I originally thought. Alice, I do see a surgical oncologist who took over the appendix cancer cases at UC when Dr. Lowy went to Calif. I emailed him what is going on as well as a copy of the ultrasound report to see what he thinks. I would rather not do too many surgeries either since I don't have that much sick time accumulated but you do what you have to. I'm still hoping that this is not at all connected to the appendix stuff! Thanks so much for your concern and, because of your replies, Alice, I did contact the onc. Guess I just needed a push in that direction. We'll see what he says. Thanks again, Ruffy

angelina127
Posts: 4
Joined: Mar 2012

I had an emergency appendectomy at age 13. I am now 36 and for the last six years I have had repeated gynecological problems such as uterine fibroids, uterin polyps, ovarian cysts, a non-functioning fallopian tube, and have recently been diagnosed with polycystic ovary syndrome all of which have resulted in problems with conceiving. I had my last laparascopy/d&c/cystoscopy on December 30, 2011. My gynecologist noticed a mass where my appendix used to be which wasn't there two years ago during a previous laparoscopy. It seemed to growing on the appendix stump which remained. She took pictures and referred me to my internist since she had no idea what the mass was. I saw my internist who also didn't know what the mass was so she referred me to a general surgeon. She recommended to have it removed and biopsied. I saw the surgeon this week who has scheduled me for surgery April 13th. He's not quite sure what the mass is but says it's probably a carcinoid tumor. I am scheduled to have the tumor removed as well as a portion of my right colon. Has anyone else on this site been diagnosed with cancer of the appendix and had a previous appendectomy? He also suspects some of my previous gynecological issues could be associated with this tumor. Have other females with cancer of the appendix have similiar problems like myself? Any insight would be much appreciated. I have no one who has gone through this to talk to. I feel very much alone. Thanks, Angela

abrub's picture
abrub
Posts: 1591
Joined: Mar 2010

Angelina,
I'd recommend having the surgery done by a specialist in Appendix cancer, if at all possible. They know what to look for, and will also have the frozen section pathology looking for the right stuff.

There is a FB group: PMP/Appendix Cancer Support, and I believe that some of the members had appendix cancer show long after having had an appendectomy. You might get some good advise there.

Where are you located? I am an appendix cancer survivor, and go to Memorial Sloan Kettering.

Appendix cancer experts are few and far between. You may have to travel to get appropriate care, but it is well worth it.

Alice

Ruffy7
Posts: 126
Joined: Sep 2011

Well my onc doesn't think the ovarian mass and appendix cancer are related. Not sure what to do now

abrub's picture
abrub
Posts: 1591
Joined: Mar 2010

Is your onc an appendix cancer specialist? Ovarian masses are common with appendix cancer.

Ruffy7
Posts: 126
Joined: Sep 2011

He's listed on the specialist board on pmp, I think. He took over when Lowy went to calif. So did you go out of network and how did that work with insurance?

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abrub
Posts: 1591
Joined: Mar 2010

My insurance plan (one of the United HealthCare plans) has a program "Cancer Resource Services" whereby they will actually pay your travel expenses to go to one of their designated Cancer Specialty Centers, of which Sloan Kettering is one. So although I travel, they pay for me and a caregiver to go, and cover everything completely. It's been amazing.

Ruffy7
Posts: 126
Joined: Sep 2011

How did you find out about it - the insurance piece, I mean? Do you live near MSK?

Ruffy7
Posts: 126
Joined: Sep 2011

How did you find out about it - the insurance piece, I mean? Do you live near MSK?

abrub's picture
abrub
Posts: 1591
Joined: Mar 2010

I travel 170 miles to MSK. I think when I made my appointment at MSK, they might have told me to check with my insurer about the program; to call United HealthCare regarding the Cancer Resource Services Centers of Excellence. Note that while Oxford Health Insurance is part of United HealthCare now, Oxford does not (yet) have the Cancer Resource Services program. It is certainly worth checking with your insurance.

The program is such that if I had chosen one of the specialty centers in California, insurance would have paid my airfare and expenses (me and my caregiver). See whether your insurance has a similar program.

angelina127
Posts: 4
Joined: Mar 2012

Thanks for the information. I live in Peoria, IL. I haven't found a specialist in my area. I have BlueCross Blueshield which are terrible when it comes to out of network coverage. I was told to contact Creighton University and Dr. Sugarbaker in Washington, D.C. by other appendix cancer patients.

Ruffy7
Posts: 126
Joined: Sep 2011

I also have blue cross and my contact with them yesterday confirmed that drs alexander, bartlett, and mansfield are considered in network. I think its called blue card or blue access. She did say to check with the specific dr though when I call.

angelina127
Posts: 4
Joined: Mar 2012

Thanks for the information. I'll look into them.

angelina127
Posts: 4
Joined: Mar 2012

Thanks for the information. I'll look into them.

Ruffy7
Posts: 126
Joined: Sep 2011

So had the d&c, hysteroscopy, and laparascopy last Thursday. She also took out the right ovary. Good news, everything came back normal/benign! The mass on ovary turned out to be a hemorrhagic corpus luteal cyst - dr. says everything is looking and acting like it's 25 years old. Would rather have something else looking 25 yr old than my uterus and ovaries! I mean really, who sees those! :0

abrub's picture
abrub
Posts: 1591
Joined: Mar 2010

Great news! So glad everything came out clean! And at least WE know about your inner youth!

Alice

Maxiecat's picture
Maxiecat
Posts: 544
Joined: Jul 2012

I also have united healthcare...but my DH's company did not get the optional travel coverage for travel to one of the cancer centers of excellence.  When we called hr they told us to look into a supplemental policy like Aflac.  Who the hell is going to insure me now!  So, we have had to make the decision for now to just seek out an appendix cancer specialist that we can get to fairly locally.  We are in VA...so we are going to try dr Alexander in Baltimore.  I would also like to get to dr Sardi in Baltimore...but he is not part of their center off excellence.  And the closest dr...dr Sugarbaker is of course out of network...I don't know if we can do a single service contract.

We just don't have several thousands of dollars lying around to travel across the country to get other opinions.

alex

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Maxiecat
Posts: 544
Joined: Jul 2012

Forgot to add...check with your insurance co to verify that the travel portion is covered.  Don't just assume that because they covered it for one person that they will cover it for you.  Once we get the opinion from dr Alexander we are going to probably see one of the other specialists.  We will check to see what is and is not covered so that there are no surprises when the bills start rolling in.   With the UHC cancer centers of excellence...if you use one...everything is covered (except for the travel portion for me) if we use another facility some things like the actual surgery might not be covered or might be covered as out of network...which would mean that we would be responsible for part of the bill.

 

be sure to not only check out your specialist ...but also the impact that it will have on your family's finances.

 

alex

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

I am glad to know all turned out well for you Ruffy. 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 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

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