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
That's not what anyone wants to hear. Did they tell you the size or exact location? That would probably make a difference. So many people have bowel surgeries and add years to their lives. Would a few zaps of radiation be a possibility to bring it down? When do you meet with the doctor again to get more information?
I have talked to my onc again. She is looking into my original surgery and path report to see if it could have been appendix/colon related cancer all along. It often mimics ovca. I asked her about this months ago when screen name orangefuzzball brought this type of cancer to my attention. I go for a ct scan Wednesday. She said Blue Cross won't ok a PET unless the CT is tried first. Stupid policy, but nothing I can do. Then I see onc the following week to discuss CT and decide what to do. I freaked out a little this morning but I am fine now. I will just fight as long and hard as I can and in the meantime I will do as much as I can to prepare the family. I know for sure I would not be able to hold myself together if it were not for all of you. Much Love, Marie
Will keep you in my prayers and thoughts until Wed. and will check back with you, see how the testing went. Too bad you have to wait another week for some answers but that seems to be the way things are done - hurry up and wait. Hugs,
In a way I am glad for the delay. This way I have 2 weeks to do as much as I can before they start working on me again. I have wasted alot of time and haven't gotten things in order as well as I should have. I will let you know more as soon as I know something. Love, Marie
Marie, I am so sorry that you did not get the news we were all hoping for. I am glad that you have some peace about it now and I will be preaying for your CT scan on Wednesday. Just know that we are here for you anythime you need us. I will be praying for you. Love you, Kasie
I'm so sorry to hear your news. My thoughts and prayers are with you. I know that we have never met, but we live so close. If you need anything at all, please do not hesitate to get a hold of me.
My father had radiation for colo-rectal cancer. (He was desperate to reverse his colostomy and wouldn't allow a surgery.) So add radiation to the list of options to ask about. I'm so sorry you have to go through all this.
I could not get on this site last night for some reason. My computer was not able to access the forum. This is the first I have seen of this thread and I wanted to tell you that I felt a sting in my heart. Not sure how else to describe it.
Sending love, prayers, and positive thoughts your way.
I hate insurance companies. I know a PET cannot be done unless there has been a real diagnosis .. such as OVCA .. and the PET is used to monitor it. There are PET/CT's that show 2 different views at once. Oh, well, can't fight the ins. co., but it sure is frustrating. God's graces be with you. Judy
Have been ill with my ureteral stents so just now getting your news. To say I am sorry is an understatement. This year is not starting off on the right path. I hope you have confidence in your oncologist and that a treatment plan gets underway ASAP.
I am keeping you in my thoughts and saying a special prayer for you. I'm glad you have two weeks to prepare, but its never a good time to have to deal with this. I am wishing you lots of strength and peace as you start this journey again.
Marie ... I am so sorry to read that your cancer has returned. There might be light with all this bad news. If the dx was wrong and it is colon/appendix cancer there are many more treatments available now for that type of cancer. Ovarian Cancer usually follows FDA approval after colon. My insurance company won't cover a petct until I get a ct first. Just like your insurance company. Waste of money. I've hit so many walls because most of the research I've done and found to be great treatments for Ovarian have approval for Colon not Ovarian. My insurance company is a bear!!!!! So if they find out that you do have this type of cancer you may have many more options. I am currently paying out of pocket for Avastin. But it is FDA aprpoved for colon. Also the cybernife which is targeted therapy is approved for colon and many other chemotherapies. These treatments are not approved for Ovarian and could work!!! Not enough funding or research. I was told that by many doctors when I approached them about different treatments. The oncologists know these treatments have a great chance of a response to Ovarian but the FDA is dragging their feet. I hope they can operate or maybe target the tumor. God Bless you, Love, Cindy
You are all giving me what I need to do this. I am going to suggest to my onc to look into the chemo combo Julie told me about. In a journal of onc on-line I read shortly after my surgery that that combo is the best for mucinous cystadenocarcinoma. I just had a 3 hr visit from a friend and I feel fortunate to have her and all of you. Marie
I am sorry to hear your news. Now I am keeping you in my prayers that it will not be as bad as it sounds.
And you are right in bringing up different treatments to your Dr. He may come up on something he hadn't thought about. Everytime I hear of a new drug or combo, I mention it to my Dr.
Hang in there and know that we are all behind you.
Since you asking me about appendix cancer last year I've thought about you often and worried that your doctors hadn't pursued that angle enough - I've checked on here most days since my cyst was first found in July 2006 but have been internetless for the past 2 weeks until yesterday evening so only just seen your post.
Pseudomyxoma is very rare but there were so many of your 'stranger' symptoms that to me seemed very familiar. I would suggest you get in touch with one of the PMP specialist surgeons and maybe get your path results seen by them. As regards not getting a PET scan first off, that may be a small blessing in diguise. CT scans are the best scans to check for PMP, PET scan don't tend to be used because the tumour is deposited in very fine layers covering organs and have a very limited blood supply and don't tend to show up. Try to get your CT read by a radiographer or surgeon who specialises in PMP, I think it's a case of getting the CD copied and sent, it's different in the UK. The cancer markers my surgeons use are CA-125, CEA and CA-19, with CEA the main indicator for me, have you had them checked, you could possibly suggest them to your doctor. Have a look on http://www.pmpawareness.org/ and http://health.groups.yahoo.com/group/pmpbellybuttons/ both have excellent information and the belly button members will be able to give you help on what to do to get them checked out. By the way if it is appendix cancer, or before you know for sure, be very cautious of having radiation. Radiation basically fries the mucous and causes it to cement to organs and makes surgery almost impossible.
On the up side if it is appendix cancer the prognosis is reasonably good if it's treated correctly. I was initially suspected ovarian stage 3-4, my entire abdomen was coated with tumour and I had litres of mucin removed as well as a soccer ball sized cyst of mucus, I've since worked out that I'd had it for about 5-7 years, it's slow growing. After 30 hours of cytoreductive surgery over 14 months and 2 lots of HIPEC I had my 12 month clear scan in October. I've recovered completely, I still have my ileostomy but that is to a certain extent due to choice and not wanting to tempt fate too much! I was in touch with a woman in California who had had been diagnosed with ovca in her 20's, had surgery and chemo, was fine for 12 years and then it was discovered she had PMP all along. She's had the proper surgery and chemo now and is about 7 years out with no recurrance.
Unfortunately I've a developed a what appears to be completely unrelated heart condition that is again very rare, my cardiologist hasn't seen it before and I'm having a load more tests to try an establish what is causing it and what exactly it is, it's a bit like PMP groundhog day!
Good luck, be brave and insist that your results are looked by someone who knows what PMP is, any other speciality will just not do! If it's not appendix you've lost nothing but if it is you will be able to get the correct treatment.
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
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.
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
My prayers are with you. I am so sorry that you now have to deal with this, but you are obviously such a strong lady. I had a colonoscopy today, My dad had colon cancer so this was my second. Two polyps removed but otherwise good report. I pray that this tumor you are dealing with now will be resolved quickly.
Marie, I am so sorry. I don't know anything about where your cancer is, but I will be praying that there is a good solution to this. Good luck with your CT this morning. I am having one also to see if the 13 tumors in my liver have shrunk. I will be praying fervently for all of us.
Marie ... my prayers will be with you as you go through this difficult time. Once they find out what is going on and you have a plan, I bet you'll start feeling better. The unknown is an awful feeling. Chin up honey! Love, Cindy
Lisa...that was very interesting! I never knew anything about appendix cancer. My doctor removed mine after my first surgery. My second surgery was very similar to yours except they didn't do heated chemo afterwards. I'm glad things are going well for you. I am a pro-active patient too. My doctor appreciates that!! Love, Cindy
My whole family have been affected by colon cancer, even little ones. The success rate on this type of cancer is very good. I am very concerned that it has taken this long to work out where the cancer is. You need to be on the correct plan to get you through this wicked wicked desease. I really feel for you obviously & just hope to god above they get on the right track & do what has to be done. That said, 'thinking of you as always'...............
I am sending you very positive thoughts and thinking about you often.
Marie, I so appreciate all the help and education you provided me when my mother was diagnosed with Ovarian Cancer in September. You were the first one to respond to my posts. You educated and assisted me in understanding the disease and how to best assist my mother in fighting this.
I know you are a fighter and I will be sending all the positive energy I can to you to fight this reoccurance!
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