new... have a few questions

joenlisa500
joenlisa500 Member Posts: 23
edited March 2014 in Colorectal Cancer #1
My mom was diagnosed with cancer in March 2004, had surgery and thought to be ovarian cancer. Pathology said colon but her colonostipy (sp?) was clear and blood work seemed good so they treated ovarian cancer. She went through months of treatments for ovarian, at first it seemed to respond then it stopped. I got her post op report yesterday and pathology report. The cancer seemed comtained to the reproductive system and abdomen, no signs of cancer in colon or stomach none in lymph nodes either. She had a cat scan and the dr said it has all returned to the same places, no fluid in abdomen, just a mass near the rectum so now we are trying colon cancer treatments. They are putting her on Xeloda to try to shrink the tumors I guess. Anybody on that treatment? I am concidering taking her to a different hospital, I am totally lost at this point,had a lot of info when I thought it was ovarian, so now I am starting over. She has a mucinous adenocarcinoma primary unknown. Tried treating ovarian, didn't work. now on to colon which was the origional pathology, has anybody ever heard of having colon cancer with no cancer in the colon. I feel like the oncologist is grasping for straws, he tells us not to give up we will keep fighting, but I don't know how long she will fight, she is only 60 and in great health otherwise, so I don't want her to quit. she said if this drug don't work she might just give up, but htat was yesterday after finding out that 6 month of being sick, tired and bald did absolutely nothing, I think I would have felt the same way. Anyway any suggestions of Dr, treatments, ect... would be appreciated. Our Dr. said we need to try this for atleast three series. She has an appt in six weeks to see if the tumor is shrinking, I hope she makes it that long and it doesnt hit any other organs while we are waiting to see if it works. He is a gyn/oncologist. He said we tried ovarian and it didn't work so now we are going to treat the mucinous part of the cancer, I wonder why we weren'ttreating that from the start. We were totally new as most are to cancer when this happened, we trust his decisions, he is the Dr. Just pray we didn't trust him for too long. Well please add me and my mom to your pray list, as I pray for everybody fighting cancer and their caretakers daily in my prayers. Thanks for any help you can give. I appreciate it.

Lisa

Comments

  • scouty
    scouty Member Posts: 1,965 Member
    #2
    Welcome Lisa!!!!

    Another Lisa, we have several on this board. I think I am the senior one. Where are you located? If you are questioning your ocn. get a second opinion. I am asking where you are because you may live near one of us that have someone we could recommend. They should have something (biopsy or surgery pathology reports that tell them what kind of cancer cells your Mom has).

    Again welcome and ask all the questions you need to. This is a great place with many many wonderful people.

    Lisa P.
  • joenlisa500
    joenlisa500 Member Posts: 23
    #3
    scouty said:

    Welcome Lisa!!!!

    Another Lisa, we have several on this board. I think I am the senior one. Where are you located? If you are questioning your ocn. get a second opinion. I am asking where you are because you may live near one of us that have someone we could recommend. They should have something (biopsy or surgery pathology reports that tell them what kind of cancer cells your Mom has).

    Again welcome and ask all the questions you need to. This is a great place with many many wonderful people.

    Lisa P.

    Hi Lisa,

    Thanks for the reply, we are in Pennsylvania, thinking of calling Philidelphia, a few of my moms friends were treated by an oncologist there, also I read about a Dr in DC that treats mucinous cancers. I don't think our dr and pathologist could come to the same conclusion so we are a primary unknown, you would think with all the research they do thay would know where it comes from anyway. well thanks for listening, I am back to square one, in April we thought we would be taking a break by now, but still fighting. I just hope she don't give up from this set back.

    Lisa
  • juliababy
    juliababy Member Posts: 130
    #4
    Hi Lisa, I'm sorry you had to find us, but you will find that this is a wonderful place. I know how you feel right now, my dad is currently being treated for stage 3 colon ca and he's very young too (63).

    I live in Southern New Jersey but work in Center City Philadelphia, in the Pathology Department at Thomas Jefferson University Hospital.

    I've been working here many many years and I know that the pathologists here normally order immunopathology stains on the specimen to tell what the primary cancer may be. I'm surprised that your mom's pathologists didn't order any special stains (as they also call them) to determine in fact what kind of cancer they are/were dealing with. If you want a good oncologist, just let me know. My fathers's oncologist, who i've also known for many many years is excellent.

    Again, welcome to our wonderful group, stay strong for you mom and encourage her to fight on - NEVER GIVE UP. Hope this helps a bit.

    Susana
  • johnom
    johnom Member Posts: 86 Member
    #5
    Dear Lisa,
    Welcome. You are a brave and supportive daughter for your mom, and I am sure she knows that.

    I strongly urge you, like the others, to get another opinion and/or another oncologist. Don't wait for six weeks, something sounds strange, so keep pursuing until you get an answer that you can at least understand.

    Good luck to both of you.
  • taunya
    taunya Member Posts: 390 Member
    #6
    Hi Lisa,
    I had my surgery in Philadelphia at Temple U Hospital. Dr. Dempsey, head of surgery, did my resection. He is so knowledgeable and so kind, I really trust him. If you can, go see him, he is the best. Please get a second opinion right away. If you have questions the Dr's are not answering, you MUST go to another Dr.and get the answers you need. I am praying for you and your Mom.
    Love and Hugs,
    Taunya
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #7
    I feel that you should seek out a second opinion at a major cancer center. Do not wait around. Maybe you could seek out Dr.Demsey (recommended above), since he is in your area. I have not heard of someone having colon cancer appear somewhere else first and then return to the rectum, but if the pathology said it was CC and now it has been found in the rectum, that is probably what it is. Strange that they didn't treat her for that in the first place. Since this is such an unusual situation she needs to be in the hands of serious specialists, not a gyn onc.....IMO. Anyway, I took Xeloda. It is a first line of defense drug, so to speak. It is an oral form of a drug that has been given for years called 5-FU. It is normally given in conjunction with other more potent and newer drugs. This does not sound like a very agressive treatment to me. Certainly you and your mother need to seek a second opinion!
    Let us know what happens, Susan
  • gabor
    gabor Member Posts: 25 Member
    #8
    shmurciakova said:

    I feel that you should seek out a second opinion at a major cancer center. Do not wait around. Maybe you could seek out Dr.Demsey (recommended above), since he is in your area. I have not heard of someone having colon cancer appear somewhere else first and then return to the rectum, but if the pathology said it was CC and now it has been found in the rectum, that is probably what it is. Strange that they didn't treat her for that in the first place. Since this is such an unusual situation she needs to be in the hands of serious specialists, not a gyn onc.....IMO. Anyway, I took Xeloda. It is a first line of defense drug, so to speak. It is an oral form of a drug that has been given for years called 5-FU. It is normally given in conjunction with other more potent and newer drugs. This does not sound like a very agressive treatment to me. Certainly you and your mother need to seek a second opinion!
    Let us know what happens, Susan

    Hi Lisa. So sorry to hear about your mom. Obviously, your not comfortable with the doctor's recommendation or you wouldn't be questioning it. Trust your instincts and seek out another opinion (or two). You may want to consider going to one of the teaching hospitals in the city (Temple). Dr. Rombeau at Univ of Penn performed my husband's surgery and he was very pleased with the results. No matter which doctor you choose, a consultation with another surgeon and onc may put your mind at ease. Good luck to you and your mom.
    Linda
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #9
    gabor said:

    Hi Lisa. So sorry to hear about your mom. Obviously, your not comfortable with the doctor's recommendation or you wouldn't be questioning it. Trust your instincts and seek out another opinion (or two). You may want to consider going to one of the teaching hospitals in the city (Temple). Dr. Rombeau at Univ of Penn performed my husband's surgery and he was very pleased with the results. No matter which doctor you choose, a consultation with another surgeon and onc may put your mind at ease. Good luck to you and your mom.
    Linda

    Hiya Lisa from OZ. Phew, another Lisa!!!!Anyway, welcome to our great group here. Ditto to the above advice. You are obviously a very loving daughter--just seeking us out says that. Hopefully you can get the information you need here and also better answers from the doctors. Knowing exactly what/where the cancer is--that is something your mum must be told, and truthfully. We hope you can return with more info--our prayers to both of you and give your mom a hugg from the guys in OZ. kanga n Jen
  • steved
    steved Member Posts: 834 Member
    #10
    Lots of good advise above and would add my support to you seeking a second opinion- it is very common to do so and docs don't get insulted by it these days.
    With respect to the confusion, it is an uncommon situation that you are in but not unheard of. Adenocarcinoma simply refers to the cell type of the cancer and unfortunately a lot of cancers are adenocarcinomas so the primary could be a range of places. Usually the site of the cancer gives clues to it hence your onc thinking it may be ovarian or bowel but being unable to be certain which. In truth it may not be possible to be sure either way and they have done the right thing in treating it as one then the other but it does lead to a lot of doubt and confusion for you. The doctors are undoubtably confused too as it is not te usual situation- they aren't gods though and will happily admit (if they are half decent) they don't always have the answer so have to deal with situations where the specific origin of the cancer is unknown.

    This is probably of little reassurance to you but I hope getting a second opinion will help yo feel more sure taht they are doing the right thing.
    Let us know how things go,
    Steve.

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