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[Julie42]

Hi, just joined today, wanted to talk to people who maybe in the same situation as me. I have Appendix cancer only found out a couple of months ago, I'm still trying to get my head around all of this as it is a rare type of cancer, and not a lot is known about it. Is any one up for a chat to discuss anything about this type of cancer.

[gn21]

I don't know anything at all about your cancer but just wanted to write and say I have read your blog, and hope that someone responds. Gail

[Rosey1045]

Hi Julie I have appendix cancer. I had surgery in September 2012 for suspected ovarian cancer, when this was discovered. I was then referred on to P.A.Hospital Brisbane, (one of only 2 hospitals in Australia specialising in this cancer) and have been on a waiting list there since January, for further surgery. I live in North Queensland. There is a lot of information on the Internet (no Australian sites!)but if you Google Appendix Cancer, you will find some English ones and many American ones. I understand that it is a rare cancer - my own GP had never heard of it. I am happy to chat to you about it. How was this diagnosed for you? Rosey

[Julie42]

Thank You Gail, someone did respond to my blog. Julie

[Julie42]

Hi Rosey, It's nice to meet someone who has the same type of cancer and knows a little about our unique type of cancer. I haven't spoke to anyone else who has Appendix cancer, have you? On Monday April the 15th I had been at home all day with pain in my abdomen. On Tuesday morning the pain had not gone, so I went to the doctors, he sent me to the Geelong Emergency department with suspected appendicitis or a cyst had burst in my ovaries, after an ultrasound, the thought it to be a twisted ovary. Wednesday morning when into theatre for key hole surgery which was supposed to take an hour, Six hours I woke from surgery to be told that they had removed my appendix also half my large intestine and given me a hysterectomy because the tumor when it had burst, had left deposits of tumor cells in my abdomen. I was referred to the Peter Mac Cancer Centre in Melbourne, they did not know a lot about the cancer, they did some blood tests and a PET scan they then tested the tumour and found out that it was a slow growing cancer. I do not need chemo as they think they got it all in the surgery. So now I have been referred back to the Geelong Hospital to the Andrew Love Cancer Centre to have regular blood test and scans to keep an eye on me. What are they going to do in the surgery, that they didn't before, and are you going to have chemo at some stage? I am 42 years old, married with an 18 year boy and a 20 year old girl, may I asked how old you are Rosie, I'm interest in knowing what is the average age of people are who get appendix cancer. Regards Julie

[Rosey1045]

Hi Julie I am 67 years old, with grown up children and grandchildren. I know of two other people through this website who had Appendiceal cancer, who are several years younger, but that's all. I don't think there is any particular age, for this cancer, and I expect you already know that it can affect men as well as women. I also have been told that it is slow growing. After my previous surgery, at the Mater when they found it not to be of ovarian origin, they informed me that they thought they had "got it all ". They had removed appendix, ovaries, phallopian tubes, right hemi-colectomy and something else that I have forgotten! I had already had a hysterectomy some years ago. However, when the pathology reported it as being of appendix origin, they referred me on to the P A Hospital's colorectal department as this was 'beyond their (the Mater) expertise '. Further scans then did reveal residual pockets of cancer cells, which is the reason for me waiting for further surgery. I have not had any chemo to date, as I understand that intravenous chemo is not beneficial for this cancer. However, when I eventually do have another operation I am expecting that whilst I am still under the anaesthetic I will have heated chemo put directly into my pelvic area. (Look up Sugarbaker technique). Which sounds delightful, but seems to be the way to go with this (and other) cancers.!!! I am glad they will be continuing to monitor your situation - did you manage to find more information on the 'net'? Yes it is very difficult not being able to discuss this with others in a similar position, being as it is unusual. Even my daughter - who is a nurse - had never heard of this. We are all much more knowledgable now!!! Best Regards - Rosemary

[Starcee]

Hi Julie, I was diagnosed with Appendix cancer in February this year. I am 44 years old and I have a 20 yo daughter and a 14 yo son. They thought that in December 2012 I had appendicitis (so they thought). They removed my appendix, but they cut it in half before they removed it and said that some jelly like substance had oozed out of it. Two months later they contacted me and advised that I had Appendiceal Mucinous Neoplasm. My GP and Local Hospital have never had a case before. So you are not alone. There just isn't many of us ad the information on this cancer is limited. Please feel free to message me. Don't know if I can give you any information but here for a chat anyway. Take Care Starcee

[Julie42]

Hi Starcee, It is a very strange feeling to have a cancer that is rare. It is nice to hear from someone else that is in the same situation as me. Did any of the jelly get in contact with any other part of you body? What are they doing for your treatment? I'm waiting to hear from the Andrew Love cancer centre in Geelong so I can meet with them to find out what they are going to do with me. All I know is that they a just going to monitor me, I don't how frequently yet. Hope to talk again soon Regards Julie

[Julie42]

Hi Rosemary, I did go online, found few web sites that gave me a little more information. I still feel very unsure about the future of the cancer. I was told that if they do go back in for surgery that I will have the chemo from the inside, my doctor called it HIPEC, I looked them both up they seem similar. I'm still waiting to hear from the Andrew Love Cancer Centre to get an appointment with them. Take care of yourself Regards Julie

[Julie42]

Hi Rosemary, I did go online, found few web sites that gave me a little more information. I still feel very unsure about the future of the cancer. I was told that if they do go back in for surgery that I will have the chemo from the inside, my doctor called it HIPEC, I looked them both up they seem similar. I'm still waiting to hear from the Andrew Love Cancer Centre to get an appointment with them. Take care of yourself Regards Julie