appendiceal mucinous neoplasm

Hi, I’ve just been diagnosed with appendiceal mucinous neoplasm, which puts me in a one in a million category apparently. 

It seem my best line of attack is to have my peritoneum removed.  Yes, I never knew I had one either ?? 

However, I’m not finding any info on the pro’s and cons of having this quite drastic operation, nor comparative survival rates, expected quality of life information etc etc. anywhere.

If anyone has any experience of this or can point me to a website, I would be much obliged. 

Thanks and best wishes 

Lee

  • Hello Lee,

    Thank you for your post.

    I am sorry to hear about your diagnosis and I can appreciate you want to know more about it.

    Appendiceal mucinous neoplasms are a rare type of type of tumour that depending on the level of abnormality (also referred to as the grade) can be low grade or high grade.  They account for 0.4% to 1% of all tumours found.

    Because they are rare there is little data collected about survival rates however, there have been a number of medical papers written by specialist doctors so there is a consensus about how to treat it. 

    If it is found in the peritoneum then surgery may be recommended to remove the peritoneum ( this lines the abdomen). 

    I am afraid that we cannot tell you exactly what will happen as this type of surgery will vary depending on the extent of surgery needed.  Only the surgeon planning your surgery can tell you more about this.

    I realise that this must be quite a shock for you, If you can you do need to talk to the hospital team again about your situation. And perhaps asking them what would happen if you did not have surgery. 

    Sometimes people ask for a second opinion but that does not always change a treatment plan but might give some reassurance about the treatment offered. 

    You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care,

    Caroline

  • Hi my daughter just been told she has this cancer but she had her appendix removed 19 years ago . Do you still have your appendix or has it already been removed 

  • clearly the source of the cancer is not her appendix, the next most likely source are her ovaries, but could be other places. 

  • I still have my appendix, it is enlarged and inflamed.  A biopsy was taken which showed no cancer cells, but the oncologist said that a biopsy taken by a colonoscopy tube can only take a surface sample, and the cancerous source is likely deeper inside. 

  • Hi thanks for replying my daughter has had previous very large cysts on ovary and so the ovary tube and cyst was removed then last year very large cyst was removed from within the void that surgery caused and now a year on another large mass has appeared and they now say peritoneal cancer I’m just hoping they got wrong diagnosis we waiting on biopsies at this time 

  • Hi, I am no expert on this, I am also a male so I haven’t been reading anything related to ovarian cancers.   I have been diagnosed with a weird kind of half cancer, where cancer from another location has entered the peritoneal cavity and is causing the peritoneum to produce a thick mucus.  Does your daughter have a bloated tummy due to a build up of mucus ? This seems to be a less aggressive type of cancer and is called PMP, (pseudomyxoma peritonei).  I have been reading a lot about this condition but I know very little about other similar conditions.  There are 2 main categories of peritoneal cancers, primary and secondary.  Primary being where the peritoneum itself produces cancer and secondary where cancer from elsewhere settles in the peritoneum.  I believe the secondary type has a better prognosis generally, but everything I read says there are no typical cases with these kinds of cancers and everyone is on a different path.  My best advice to you is to do what you are doing, don’t sit around waiting and hoping for a misdiagnosis, get active on these kind of forums and read as much as you can.    A good source of support, particularly if you are in the UK and end up referred to a specialist hospital in Hampshire or Manchester, is the PMP forum on Facebook.  They can give advice on anything from good questions to ask, to good places to stay nearby, to the best way to get out of bed after major abdominal surgery.  It’s very helpful just to have someone to talk to that understands what you are going through. I find that not that many people are active on this site but on the Facebook forum you will get lots of quick replies to anything you post.  I wish your daughter a good recovery and good luck with your research. 

  • Hello and thanks for posting,

    Despite the main body of the appendix itself being removed, there are rare cases of cancer occurring at the appendix 'stump' area. This is where the appendix tissue ends and becomes the bowel. So around the area of the original surgical site. This can happen many years later.

    Hopefully you will find out more soon, about a treatment plan for her. 

    I hope that this helps,

    Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Yours sincerely,

    Vanda

  • Hello Vanda, thank you for the extra information, it is interesting that an appendix that has been removed can still be the origin of the cancer.  As for my condition, do you have any information on the comparative efficacy of CRS + HIPEC versus CRS + CHPP  (continuous hyperthermic peritoneal perfusjon)? Thank you for any help or information. 

  • Hello happyboylee and thank you for your further post,

    When I searched for both HIPEC (hyperthermic intraperitoneal chemotherapy) and CHPP (continuous hyperthermic peritoneal perfusion), it looked like these were the same treatment which is given after cytoreductive surgery (CRS). However, I would check this with your specialist to clarify this. Some papers compare CRS/ chemotherapy with CRS / HIPEC but I cannot find any with HIPEC versus CHPP

    You may have read this already, on our web page about treatment for pseudomyxoma peritonei (PMP) there is a small section about HIPEC  and surgery.

    Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care, all the best 

    Jemma