Mom just diagnosed, need advice

krinla
krinla Member Posts: 4
edited March 2014 in Caregivers #1
My mother was just diagnosed. She had some polyps removed (which she has before because of her crohn's disease), but this time one of them (in her lower rectum) had cancer in it. They called it adenocarcinoma with probable angiolymphatic something. I don't even know because I'm getting this info from my dad.

Anyway, my way to deal with things like this is to do tons of research, which is difficult because I don't have much information. I left a message with her doctor, but it's an HMO and who knows when they will call me. She just found out last week and then saw a surgeon yesterday. He wanted to remove the rectum, which my parents didn't understand or agree with given that he told them they couldn't do any more tests. They then talked to the gastroenterologist again to get some other opinions scheduled. The earliest CT scan appointment is in two weeks, then she'll see another oncologist. Doesn't this seem like a long time? Should I be screaming about this? My dad said they told them there is no stage when I told him to ask. That seems weird. I mean, they didn't find it anywhere but the polyp, but they also called it invasive. I'm so confused.

Also my parents are very private and my mom is very depressed, so they don't like to talk about it. I really don't know what to do because I don't want to upset them more. Any advice or knowledge on this subject is greatly appreciated.

Comments

  • timmythefox
    timmythefox Member Posts: 5
    #2
    I think it's always a good idea to get a second opinion.

    When my mother had breast cancer in the 1980s she went from diagnosis to surgery in just a few days and I really did get the idea that they were in a big hurry to treat her, so I was a little shocked when the pulmonary specialist who gave her a preliminary diagnosis of lung cancer this week actually said with a chuckle that "it's not like this is a no time to lose type situation." He scheduled her for tests the following week, and then for a consultation with him to discuss the results a full week afterwards.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #3
    WOW! You are such a great help!!!!
    I am a rectal cancer survivor, lost my recum and sig colon....1 1/2 years ago.
    Make sure that someone goes with mom to every appointment who will take notes. Also, contact ACS (1-800-ACS-2345) and ask for a cancer dictionary... (usually for breast cancer "Reach for Recovery" patients, but still has MEGA terms that you will hear....).

    The colorectal cancer board at this site (we are known as the semi-colons) is VERY active...we have posters that are in every stage of treatment and recovery....some stage 4's that are maintaining No Evidence of Disease (the closest the medical community will get to 'cure') for years.....

    Happily, in most cases, rectal cancer is very slow moving. Invasive in mom's case probably just means that it has gone slightly into the colon wall....but 2 weeks is ok for a CT scan...unless she can't have a bowel movement. THEN, the docs should be called IMMEDIATELY!

    Second opinions are a VERY good idea...my slides from the tumor traveled the WORLD!!! Ended up being read by the guy who wrote the book on how to read path slides!!!

    And then I found a surgeon that specialized in low bowel resection...so I am without any exterior appliance...have a new 'rectum' inside made of part of my residual colon.

    Please feel free to e-mail me here, if you would like....you can read my story by clicking User Directory on your start page, and then typing my name in KathiM (caps are important) and then Web Page....

    Hugs from a 'been there/done that'
    Kathi
  • krinla
    krinla Member Posts: 4
    #4
    KathiM said:

    WOW! You are such a great help!!!!
    I am a rectal cancer survivor, lost my recum and sig colon....1 1/2 years ago.
    Make sure that someone goes with mom to every appointment who will take notes. Also, contact ACS (1-800-ACS-2345) and ask for a cancer dictionary... (usually for breast cancer "Reach for Recovery" patients, but still has MEGA terms that you will hear....).

    The colorectal cancer board at this site (we are known as the semi-colons) is VERY active...we have posters that are in every stage of treatment and recovery....some stage 4's that are maintaining No Evidence of Disease (the closest the medical community will get to 'cure') for years.....

    Happily, in most cases, rectal cancer is very slow moving. Invasive in mom's case probably just means that it has gone slightly into the colon wall....but 2 weeks is ok for a CT scan...unless she can't have a bowel movement. THEN, the docs should be called IMMEDIATELY!

    Second opinions are a VERY good idea...my slides from the tumor traveled the WORLD!!! Ended up being read by the guy who wrote the book on how to read path slides!!!

    And then I found a surgeon that specialized in low bowel resection...so I am without any exterior appliance...have a new 'rectum' inside made of part of my residual colon.

    Please feel free to e-mail me here, if you would like....you can read my story by clicking User Directory on your start page, and then typing my name in KathiM (caps are important) and then Web Page....

    Hugs from a 'been there/done that'
    Kathi

    You guys are very helpful, thank you! It helps just to know that there are so many survival stories.

    She is feeling okay considering, just has no appetite at all - which I don't think is abnormal right now.

    Apparently the "probably invasive" part came from the fact that they found a few strange looking cells in a blood vessel inside the polyp. The cancer area was also a very tiny area of the polyp - the gastroenterologist was actually surprised they even found it.

    I think my biggest concern now is that given the HMO she won't have the best opportunities for something like you were given, KathiM. She really does not want the colostomy, she's only 61 years old. I called City of Hope but they don't accept her HMO for anything other than bone marrow transplants.... I just want the best for her.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
    krinla said:

    You guys are very helpful, thank you! It helps just to know that there are so many survival stories.

    She is feeling okay considering, just has no appetite at all - which I don't think is abnormal right now.

    Apparently the "probably invasive" part came from the fact that they found a few strange looking cells in a blood vessel inside the polyp. The cancer area was also a very tiny area of the polyp - the gastroenterologist was actually surprised they even found it.

    I think my biggest concern now is that given the HMO she won't have the best opportunities for something like you were given, KathiM. She really does not want the colostomy, she's only 61 years old. I called City of Hope but they don't accept her HMO for anything other than bone marrow transplants.... I just want the best for her.

    I have an HMO....Health Net....just a little trickier...but, I got my surgery done "Out of network"....you just have to be more vocal....threaten with the Insurance commission, etc....ride tail on them....they WILL perform....get copies of everything, tho.....

    Yes, loss of appetite is, sadly, one of the side effects of the beast....even if it is just stress related....

    BUT if it is not outside the polyp, they may not need to do anything more than watch her more closely....this is actually GOOD NEWS!!!!

    Hugs, Kathi
  • krinla
    krinla Member Posts: 4
    #6
    KathiM said:

    I have an HMO....Health Net....just a little trickier...but, I got my surgery done "Out of network"....you just have to be more vocal....threaten with the Insurance commission, etc....ride tail on them....they WILL perform....get copies of everything, tho.....

    Yes, loss of appetite is, sadly, one of the side effects of the beast....even if it is just stress related....

    BUT if it is not outside the polyp, they may not need to do anything more than watch her more closely....this is actually GOOD NEWS!!!!

    Hugs, Kathi

    Thanks, Kathi. That's what we were thinking too. And why we were so suprised when the surgeon wanted to remove the rectum without doing any more tests! Thankfully, it looks like Kaiser is coming up to the plate now. They already did a blood test and she has a CT scan today, and will meet with a panel of oncologists next week. Whew! That makes me feel so much better.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #7
    krinla said:

    Thanks, Kathi. That's what we were thinking too. And why we were so suprised when the surgeon wanted to remove the rectum without doing any more tests! Thankfully, it looks like Kaiser is coming up to the plate now. They already did a blood test and she has a CT scan today, and will meet with a panel of oncologists next week. Whew! That makes me feel so much better.

    That sounds better. A friend of mine was in the hospital for what was thought to be food poisoning. Turned out to be colon cancer. BUT the surgeon wanted to cut first, ask questions later...luckily I put my 2 cents worth in, he went to City of Hope...told he needed pre-surgical treatment first...tumor reduction.

    Moral? Surgeons LOVE to cut, thinks it solves everything....second opinions are a GREAT thing, and questions, too....

    Please keep us posted!

    Hugs, Kathi
  • krinla
    krinla Member Posts: 4
    #8
    KathiM said:

    That sounds better. A friend of mine was in the hospital for what was thought to be food poisoning. Turned out to be colon cancer. BUT the surgeon wanted to cut first, ask questions later...luckily I put my 2 cents worth in, he went to City of Hope...told he needed pre-surgical treatment first...tumor reduction.

    Moral? Surgeons LOVE to cut, thinks it solves everything....second opinions are a GREAT thing, and questions, too....

    Please keep us posted!

    Hugs, Kathi

    She met with more doctors today after having more tests done. My dad was short so not sure exactly but he said they wanted to do surgery still. They are seeing another doctor in a few days.

    I guess the reasoning is that because they found some bad looking cells in a blood vessel in the polyp, they assume that it's in the blood and want to remove the area to be sure? I don't understand really, need to ask more questions.
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #9
    And I know as you to help! Do not think, I not the madman. I as well as you was sick of a cancer of lungs. I was long treated in dear clinics, but nothing helped. I have despaired and going to die. But the my dear daughter has learned about the person who treats a cancer, medicinal grasses. It has contacted it and has asked than it can help in the circumstances. To us have answered, that a cancer we shall cure and it is just necessary to carry out instructions. I at once have thought, that my daughter deceive what to receive money. There is a treatment of 110 000 dollars. And I have not given money of my daughter and would tell that it did not contact which people at all did not see. But my daughter has disobeyed me and has taken the loan in bank and has paid the necessary sum. In a week we have by mail received a small package. In it there was some kg of the dried plants, crystals of salts and the detailed instruction on preparation of medicines. I was malicious on the daughter, but understood, that it does it of love to me. And I have started to accept a medicine. Also there was my surprise - I have felt better! I have recovered in a month. My lungs became similar to lungs of the baby, and I smoked 35 years. Doctors who have told, that I shall die, have been surprised by my healing. They have told are a miracle. But since then has passed 6 years. And this miracle has occured to many people to whom I have advised to write the letter and to ask the help for the unusual doctor. On my eyes have been cured 28 person with various forms of a cancer. All of them have paid the various sums of money. From 40 000 up to 150 000 dollars. To one little girl, all was free-of-charge.
    I as know, that many very known people used these medicines. Many people do not trust me, but I have gone through all, and I approve, that miracles happen. And I give a guarantee to people who doubt of my words, that they will recover. Now I alive and healthy! Both I am happy! And I wish your of good luck and health, and please do not despair, simply strictly carry out instructions. I guarantee to you, that with you all will be good.
    I wish you healing and I ask - address for the help to this email- weter09@yahoo.com

    Forgive my bad English.

    Yours faithfully Dok Manomah.

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