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My moms cancer

joenlisa500
Posts: 23
Joined: May 2004

I will try to make this as short as possible but still explain my situation. A year ago this week my mom was found to have cancer in her abdomen and reproductive organs a surgery was performed and removed all the cancer the surgeon found. It was a mucinous adenocarcinoma which at the time just meant cancer to me. Pathology said colon or GI and the surgeon insisted since she had no elevated tumor markers and a clean colonoscopy he felt it was ovarian so he went on for seven months to treat ovarian. She became symptamatic with right side pain again in November, did a CAT scan and found tumor return in all the same areas. Started her on just xeloda and needless to say we left that hospital and went for a second opinion. The new onc. said it was definately not ovarian, so we started over, still on xeloda which must have been doing something because she feels great dispite the fact that there is a tumor in the area of the cecum in the colon. Our new oncologist ordered every test under the sun to find a primary, after the CAT and PET it appears that there is a tumor showning increased activity in the cecum so we went yeaterday for a surgery consult. The surgeon doesn't want to rush into surgery, last one was a disaster, blood clots, lung infection, you name it she had it. He said the scans currently are only showing one tumor he feels that it could be shrunk with chemo. The oncologist was afraisd of a perferation, he said from what he sees on the colonscopy report that is highly unlikely. He said there is always the risk of perferation ar obstruction when you are dealing with a colon cancer and after everything she has been through to be doing as good as she is is amazing. Now I am confused though. I don't know if the surgeon fells that there is nothing to gain by surgery or if he feels the results will be the same with or without it. He is going to present her case to the other surgeons and see if the majority agree with him. In the mean time I guess we just stay on xeloda and wait to hear. Clinically none of her doctors can even believe she has cancer, her blood work is better then mine even when she is on chemo, they say if they didn't see it on the scan they would never know, that just adds to the confusion of the who disease. The surgeon said there is no cure since it is already spread, we know that, I am just wondering can this be controlled if it isn't totally removed. I don't know if any of this even makes sense I know it doesn't to me, I just don't want to waste anymore time treating this the wrong way. There is also a growth in near the rectum but it came back cystic in nature on the PET, the surgeon never even mentioned it, doesn't cause mom any discompfort and has been there since NOV. is it possible this could be a cyst?? I know everybody has a different case when dealing with colon cancer and I guess even though we did go through chemo for the wrong tumor the surgeon wants to treat it more like a recurrence and see if the colon cancer treatments will help. He said surgery can be an option if the chemo doesn't shrink it..... I still feel after a year of fighting this disease we are no further then when we started....I guess we are a little further, mom can eat, and work with no pain, something that wasn't and option before the surgery. Sorry this is so long I am just confused, we will hear from the surgeon in the next two weeks in the mean time she feels great,except the sore feet from the xeloda, so I guess we just continue to wait and pray as we have been doing.. Thanks for listening.

Lisa

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hi Lisa....wow!another Lisa. Sorry to hear of your mum and welcome. She seems to have had a very hard time of it and you, rightfully so are very concerned. You have spent considerable time here trying to explain what your mother has been thru but from the way I see it you seem to suggest that the surgeons are unable to determine the primary cancer? Is that correct?
In her first surgery do you know exactly what was done? You say the surgeons removed all the cancer found in her abdomen and reproductive organs...did she have a colon resection?
Now it appears there is a tumour in her caecum and they are reluctant to operate due to her past complications. There are so many confusing issues in your post here Lisa it is any wonder you are confused and worried. After your mums trouble with the first surgery there is probably much concern from her surgeon to open her again.
"clinically none of her doctors can even believe she has cancer".........in a lot of cases that is not unusual as some of us do not produce obvious symptoms at all in the first instant. That is why particularly bowel cancer is so difficult to detect. Not being a female I can't speak for ovarian cancer but have heard that symptoms in that cancer sometimes do not show up.
Gals here, correct me if I am wrong!
For the time being Lisa you can only trust in her doctors evaluation. Possibly more detailed info on what they actually did remove in the first operation would assist others here to comment.
I discussed with my surgeon the possibility of a re-occurance of my cancer and what options would still be available surgery wise. He said they evaluate further surgery depending on location of cancer, the benefits of surgery and the ability of the patient to cope as well as whether a patient has already been operated previously. In some cases it is better to use chemo or radiotherapy than to re-open old wounds to avoid major scar tissue developement or adhesions. There are a lot of factors they use to evaluate surgery, these are only some of them.
Remember Lisa that comments here are only related to what we individually get told and are seldom the norm. Each cancer case is different just like everyone can have different reactions to chemo or rad. treatment. Take these comments as further information but never as a rule. We are not medical experts but can only relate by personal experience.
Our very best to your mum.....our love to you as a concerning daughter, kanga n Jen

joenlisa500
Posts: 23
Joined: May 2004

Hi thanks for your reply,

They were treating her as ovarian which she never had , then primary unknown when the ovarian treatments didn't work however out new Dr. think it was always a colon primary, just missed by the first surgeon. They now think the primary was always in the cecum area however never removed or delt with if that makes any sense, doesn't to me but I'm not the doctor. She never had a colon resection because there was no sign at the time of tumor in or around the colon, only pathology said so, now a year later there is, like I said real difficult to understand especially when you are trying to remember everything you may have already said. To the new doctor it was always a primary colon just mis diagnosed and mis treated. Don't exactly know the reasons this one don't want to resection, have to wait to see what our oncologist says and hope for the best. Thanks

Lisa

Shandle
Posts: 205
Joined: Apr 2005

Hi Lisa, I can just feel the stress in your post. My heart goes out to you and your mom. After reading Kanga reply, I have to say it was pretty well said. Keep us posted how your mom is doing. Hugs n prayers ~ Wanda

madu
Posts: 53
Joined: Mar 2005

Wow Lisa - it sounds like you need to have a clarifying discussion with someone where you can ask any and all questions! I know my onc spent about 1 1/2 hours with me just to go over all my questions - just write 'em down so you don't forget anything. I just want to address one thing in your post. You say ..."there is no cure since it's spread" . As a stage IV rectal sigmoid cancer survivor with a met to the liver who has survived 6 years and 8 months I beg to differ! I "knew" there was no cure for me but I just kept on going and here I am, in remission and no sign of disease. Keep plugging, ask lots of questions and if you don't get the answers, find someone else.

Heidi

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Now there you go Lisa. Heidi is proof that the fight can be won! Congatulations Heidi for reminding us all that the beast can be slayed.
Lisa. I have a male friend here who was dx'd 18 years ago, had a bowel resection with a colostomy(bag) and NO chemo--that was 18 years ago!!He lives a normal life yet still admits it still scares him when he has tests done. Lisa..the fear never really leaves us...that is the natyre of the disease but it sure as hell can be treated. It is a question of how, what treatment, the persons immediate health, the symptoms......heaps of factors. It is difficult to comment on your mum precisely..probably no-one here could but nonetheless there must be valid reasons why the doctors/oncologist/specialists are taking the course they have. Heidi's suggestion of getting all the information possible is your best way of seeing things in perspective. Do you have the information from your mum? How did you recieve the information you have spoken to us about so far?
You or your mother need to ask questions--right them down as you think of them. Also it is worth remembering that some answers/info etc. that we get told during discussions with the surgeons etc. is not always remembered or understood because there is always a lot of info getting relayed to us at any one time. I know this because there were appointments that Jen attended with me and she remembered a lot that was said--I remembered some things but not all. It became very confusing for me. A lot of the stuff I didn't totally devour because at the time I was too upset/dietressed/angry/afraid...all of those and more Lisa. The information was just too much for me.
So you see..it can all become very confusing.
I re-iterate as a "guess" that the surgeon may think it is better to use chemo to treat the caecum tumour than to invade your mum for the second time. You have already said that he would use surgery "as an option" if the tumour did not shrink. Maybe if they think they have cleared up any other cancer they are looking at the caecum tumour as the primary.
Hope it all goes well, Lisa. Keep us informed and look after yourself too!!!
luv n huggs, kanga n Jen

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Hi Lisa,

My heart goes out to you. I can't imagine being treated for the wrong type of cancer, but how blessed your mother is for having you as her advocate.

Heidi's post says it all. We can be well with this disease...regardless of our stage or age. I'm glad your mother is feeling well and pray that the right combination of drugs and/or surgery will soon be decided. Keep us posted on her progress.

Hugs,

Kay

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