Aa
Path is back
GI doc just called. Lesion in colon is mucinous cystadenocarcinoma just like before. She said it is on the outside of my rectum working its way in. Has anyone had any recurrence like that? I hope it is operable because chemo didn't shrink my cancer. Thanks for "listening". I love you all. Marie
Hoping you are ok...just want u to know you are in my thoughts and prayers always..good luck tomorrow...love, Gia xoxo
Marie.. Just sending good thoughts to you for tomorrow morning especially !! I hope it goes well and they can decide on the perfect treatment for you !
Take care and have good rest tonight,
Love,
Sandy
Take care and have good rest tonight,
Love,
Sandy
Thanks for asking. Right now I am full of mixed berry flavored barium stuff for my CT tomorrow morning. I am feeling okay. I can now feel the tumor when I sit down, but it is just a vague feeling. No severe pain or anything. I am hopeful that some kind of treatment can be found for me. I have a weird cse. Some things are like what orangefuzzball describes. Some symptoms are like colon cancer and some are like ovca. I hope soon I will be on a treatment plan that will buy me more time here with my family. Love, Marie
Hi Cindy,
Be warned never ask anyone with appendix cancer about it, we rattle on for ages!
Appendix cancer is very much one on it's own. It's rare, about 1 in a million, and doesn't behave like 'normal' cancers. It's usually very slow growing and usually stage 4 when diagnosed. Incidence is equal male/female, youngest I know is 21, oldest 80-odd - Audrey Hepburn died of appendix cancer although it's often stated as bowel cancer - would require too much explanation in biographies! There are only 2 hospitals in the UK that are licenced to do the operation, there are about 15 or so surgeons in the US that do it. It is often mis-diagnosed as ovarian cancer or bowel cancer - my pre-op scans were read as having ascites and wide spread and extensive tumour, so much so that I had bowel and gynae surgeons at first op as they couldn't decide where the primary was, I was told to expect an 'open and shut'. Luckily I was operated on in one of the best cancer centres in Europe and where they treat PMP so it was recognised, otherwise I doubt that it would have been treated as PMP. Symptoms are usually identical to ovca, very large mucinous ovarian cysts are found in ovulating women.
A cancerous polyp develops in the appendix, it eventually blocks the lumen. The lining of the appendix produces mucous like the bowel lining, this literally blows the appendix up like a balloon which eventually bursts. The mucous in the appendix, mucous producing cells and cancer cells enter the peritoneal cavity and join the flow of peritoneal fluid that is moving around the abdominal cavity, cells can seed on all abdominal organs (only in the later stages the small bowel as it's movement seems to prevent seeding) - hence stage 4 very quickly. The tumour that develops is very fine, like a coating or plaque rather than a tennis ball, the tumour produces mucous like the lining of the appendix. When this happens it is called pseudomyxoma peritonei, or PMP. This can also happen with mucinous ovarian cancers when the cyst burst, there's also a type that starts in the bladder area. You know when you hear someone relatively young has gone to theatre and they are found to be 'riddled' with cancer, the majority of them would proberbly have PMP, it looks like organs are completely cancerous rather than having a coating.
Tumour tend to be mostly on the outside of the ascending colon and over the right diaphragm (following the flow of peritoneal fluid) and in the pelvis (gravity). I had large deposits on my diaphragm and in my pelvis with a very fine covering over most of the rest of my abdomen, it was described by my surgeon as looking as if i had been spray painted white, the mucous is often orange. The tumour doesn't tend to invade organs or spread through lymph or blood and is usually confined to the abdomen. The mucous is a major problem because it over time starts to fill the abdomen and has nowhere to escape - just like ascites but it can't be drained because it's too thick - which then starts to compress organs and stop them functioning and eventually causes death if untreated. The mucous can also 'cement' and sets hard - this is made worse by radiation, unlike bowel cancer. Hardened mucous is very hard to surgically remove and obviously causes problems if around organs.
The gold standard treatment is the Sugarbaker Procedure, named after the surgeon that invented it, who practices in Washington. The surgery involves complete cytoreduction, all visible tumour is removed and all non-essential abdominal organs. The surgery varies from being found in an unburst appendix to extensive tumour and mucous many years after it's burst, surgery is between 6 hours and upwards.The operation usually lasts between 10-12 hours, I had mine in two parts because it was pretty advanced, not all ops are this big by far. One for upper abdomen (13.5 hours) and six months later lower abdomen (9.5 hours), involving removal of spleen, gall bladder, total omentectomy, all affected connective membranes and peritoneal lining, small bowel resection, large bowel resection with ileostomy, hysterectomy and oophrectomy, stomach, liver and diaphragm surfaces stripped and belly button removed. Before the parts are joined together heated intraperitoneal chemo (Mytomycin C) is put into the abdomen and swirled around for 90 minutes, I had this after both ops usually it's just the once. The surgery is the most extensive elective surgery there is and is often known as MOAS, Mother of all Surgery.
A proportion of (ignorant)surgeons say it's barbaric and affects quality of life and advise against it. I haven't found it has overly affected my quality of life and I can assure you if they had PMP they would go for the best treatment available. I didn't find that the operations were too bad, not much worse than my initial surgery which would be equivilent to what I would have had for ovca (8.5 hours) although repeated surgery was hard going with each one making it a bit more difficult to recover from. If all visible tumour is removed and HIPEC is given then there is an 80% chance of no reccurance at 10 years.
If it's inoperable (vital organs badly affected or cemented mucous) then systemic Mytomycin C often can keep it at bay for several years and occassionally enable it to be operated on. Systemic chemo is not used otherwise as the tumour has a very poor blood supply (so doesn't get to the tumour effectively) and is too slow growing (has to catch cells in dividing phase). There's a lot of research going on around the world and there has been a good few developments since I've known about it and treatments are moving on all the time.
I did warn you!
Lisa.
Be warned never ask anyone with appendix cancer about it, we rattle on for ages!
Appendix cancer is very much one on it's own. It's rare, about 1 in a million, and doesn't behave like 'normal' cancers. It's usually very slow growing and usually stage 4 when diagnosed. Incidence is equal male/female, youngest I know is 21, oldest 80-odd - Audrey Hepburn died of appendix cancer although it's often stated as bowel cancer - would require too much explanation in biographies! There are only 2 hospitals in the UK that are licenced to do the operation, there are about 15 or so surgeons in the US that do it. It is often mis-diagnosed as ovarian cancer or bowel cancer - my pre-op scans were read as having ascites and wide spread and extensive tumour, so much so that I had bowel and gynae surgeons at first op as they couldn't decide where the primary was, I was told to expect an 'open and shut'. Luckily I was operated on in one of the best cancer centres in Europe and where they treat PMP so it was recognised, otherwise I doubt that it would have been treated as PMP. Symptoms are usually identical to ovca, very large mucinous ovarian cysts are found in ovulating women.
A cancerous polyp develops in the appendix, it eventually blocks the lumen. The lining of the appendix produces mucous like the bowel lining, this literally blows the appendix up like a balloon which eventually bursts. The mucous in the appendix, mucous producing cells and cancer cells enter the peritoneal cavity and join the flow of peritoneal fluid that is moving around the abdominal cavity, cells can seed on all abdominal organs (only in the later stages the small bowel as it's movement seems to prevent seeding) - hence stage 4 very quickly. The tumour that develops is very fine, like a coating or plaque rather than a tennis ball, the tumour produces mucous like the lining of the appendix. When this happens it is called pseudomyxoma peritonei, or PMP. This can also happen with mucinous ovarian cancers when the cyst burst, there's also a type that starts in the bladder area. You know when you hear someone relatively young has gone to theatre and they are found to be 'riddled' with cancer, the majority of them would proberbly have PMP, it looks like organs are completely cancerous rather than having a coating.
Tumour tend to be mostly on the outside of the ascending colon and over the right diaphragm (following the flow of peritoneal fluid) and in the pelvis (gravity). I had large deposits on my diaphragm and in my pelvis with a very fine covering over most of the rest of my abdomen, it was described by my surgeon as looking as if i had been spray painted white, the mucous is often orange. The tumour doesn't tend to invade organs or spread through lymph or blood and is usually confined to the abdomen. The mucous is a major problem because it over time starts to fill the abdomen and has nowhere to escape - just like ascites but it can't be drained because it's too thick - which then starts to compress organs and stop them functioning and eventually causes death if untreated. The mucous can also 'cement' and sets hard - this is made worse by radiation, unlike bowel cancer. Hardened mucous is very hard to surgically remove and obviously causes problems if around organs.
The gold standard treatment is the Sugarbaker Procedure, named after the surgeon that invented it, who practices in Washington. The surgery involves complete cytoreduction, all visible tumour is removed and all non-essential abdominal organs. The surgery varies from being found in an unburst appendix to extensive tumour and mucous many years after it's burst, surgery is between 6 hours and upwards.The operation usually lasts between 10-12 hours, I had mine in two parts because it was pretty advanced, not all ops are this big by far. One for upper abdomen (13.5 hours) and six months later lower abdomen (9.5 hours), involving removal of spleen, gall bladder, total omentectomy, all affected connective membranes and peritoneal lining, small bowel resection, large bowel resection with ileostomy, hysterectomy and oophrectomy, stomach, liver and diaphragm surfaces stripped and belly button removed. Before the parts are joined together heated intraperitoneal chemo (Mytomycin C) is put into the abdomen and swirled around for 90 minutes, I had this after both ops usually it's just the once. The surgery is the most extensive elective surgery there is and is often known as MOAS, Mother of all Surgery.
A proportion of (ignorant)surgeons say it's barbaric and affects quality of life and advise against it. I haven't found it has overly affected my quality of life and I can assure you if they had PMP they would go for the best treatment available. I didn't find that the operations were too bad, not much worse than my initial surgery which would be equivilent to what I would have had for ovca (8.5 hours) although repeated surgery was hard going with each one making it a bit more difficult to recover from. If all visible tumour is removed and HIPEC is given then there is an 80% chance of no reccurance at 10 years.
If it's inoperable (vital organs badly affected or cemented mucous) then systemic Mytomycin C often can keep it at bay for several years and occassionally enable it to be operated on. Systemic chemo is not used otherwise as the tumour has a very poor blood supply (so doesn't get to the tumour effectively) and is too slow growing (has to catch cells in dividing phase). There's a lot of research going on around the world and there has been a good few developments since I've known about it and treatments are moving on all the time.
I did warn you!
Lisa.
Your information was so valuable. I learned so much. Is appendix cancer different from appendix/colon cancer? Does that mean either or? Or does it mean they are the same disease? Marie mentioned that so I was wondering if they were different. I also didn't know that radiation with this type of cancer could cause problems. I'm glad to hear that you have recovered and doing well.
Marie...How are you feeling? .....Cindy
Marie...How are you feeling? .....Cindy
Have an Answer?
You are reading content posted in the Ovarian Cancer Community
Learn how to spot the warning signs of this “silent killer.”
Diet and digestion have more to do with cancer prevention than you may realize
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
