New - Husband diagnosed

Kathleen808
Kathleen808 Member Posts: 2,342 Member
edited March 2014 in Colorectal Cancer #1
Hi,
Here we are, new to this board. Didn't think we'd be here but my healthy, 51 year old husband had a routine colonostomy last Monday and is now scheduled for surgery next Tuesday. We have left our home in Hawaii and traveled out to California to be with my family and have ****'s surgery in Los Angeles. He has a 4cm tumor in his colon. His CEA is 1.2. We don't know much but are trying to read everything we can. I have read many posts on this board already and appreciate all that you have shared.
We will be in touch. Thank you already for all that you have shared.
Aloha,
Kathleen
«1

Comments

  • msccolon
    msccolon Member Posts: 1,917 Member
    welcome
    Sorry to hear about your husband's dx but I am glad to see you are being proactive and getting information and support; you will find that the support is one of the most important aspects of this battle! As you have read in other threads, try to limit what you search out on the internet, it will scare the bejeesus out of you! Come here and remind yourself of all the people currently battling and battling successfully! Hopefully his tumor has been found early and his prognosis after surgery will be very good! Make sure the pathology department at the hospital tests the tumor for tolerance/intolerance to the different kinds of chemo; it will help if he needs to be given chemo at a later time, making it more efficient for all! Discuss it with your husband's surgeon.
    mary
  • tiny one
    tiny one Member Posts: 465 Member
    newly diagnosed
    Saying prayers for you and your husband. I was diagnosed in 07 with colon cancer. I had a resection and a temporary ileostomy. The bag was reversed. I am cancer free doing well with some side effects from radiation. I am feeling well I'm strong. My journey was a long one, I pray his tumor will be benign. I was in good physical shape before my surgery, that's why I went thru treatment so easy. I recovered from my surgery very well also. I was also determined to get back on the riding tractor and work in my yard as soon as possible. The bag didn't slow me down much.
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    tiny one said:

    newly diagnosed
    Saying prayers for you and your husband. I was diagnosed in 07 with colon cancer. I had a resection and a temporary ileostomy. The bag was reversed. I am cancer free doing well with some side effects from radiation. I am feeling well I'm strong. My journey was a long one, I pray his tumor will be benign. I was in good physical shape before my surgery, that's why I went thru treatment so easy. I recovered from my surgery very well also. I was also determined to get back on the riding tractor and work in my yard as soon as possible. The bag didn't slow me down much.

    thanks for welcome
    Hi,
    Thanks for the welcome. This waiting period before surgery and "staging" is a bit difficult. The gastro who did the colonoscopy on 1/12/09 threw out the terms Stage 2 or 3. The surgeon we spoke to on 1/19/09 said we don't know anything until they get in there and take out some lymph nodes. My husband's CAT scan mentioned multiply enlarged lymph nodes... that sounds more than scary to us.
    Thank you to everyone who has posted so much information.
    Aloha,
    Kathleen
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    tiny one said:

    newly diagnosed
    Saying prayers for you and your husband. I was diagnosed in 07 with colon cancer. I had a resection and a temporary ileostomy. The bag was reversed. I am cancer free doing well with some side effects from radiation. I am feeling well I'm strong. My journey was a long one, I pray his tumor will be benign. I was in good physical shape before my surgery, that's why I went thru treatment so easy. I recovered from my surgery very well also. I was also determined to get back on the riding tractor and work in my yard as soon as possible. The bag didn't slow me down much.

    thanks for welcome
    Hi,
    Thanks for the welcome. This waiting period before surgery and "staging" is a bit difficult. The gastro who did the colonoscopy on 1/12/09 threw out the terms Stage 2 or 3. The surgeon we spoke to on 1/19/09 said we don't know anything until they get in there and take out some lymph nodes. My husband's CAT scan mentioned multiply enlarged lymph nodes... that sounds more than scary to us.
    Thank you to everyone who has posted so much information.
    Aloha,
    Kathleen
  • VickiCO
    VickiCO Member Posts: 917
    Welcome to the best site ever
    Kathleen,

    We are sorry for the reason you had to find us, but happy you are here. You will get the best help here...as was said, stay OFF the internet. Anything there is old info, and based on statistics. None of us are a statistic.

    You mentioned staging. There are differing views on this. My oncologist and gastroenterologist both told me their tests indicate I am Stage 3 - but the surgeon says we won't know until he actually goes in and the pathologies are done on the tumors and maybe, just maybe, I'll be a stage 2. Who cares? Just cut the beast out!

    There is so much to learn and understand. Keep coming here with questions - ANY questions, nothing is forbidden here.

    God Bless you both,

    Vicki
  • kmygil
    kmygil Member Posts: 876 Member
    Welcome
    Hi Kathleen,

    Welcome to the semi-colons. I'm sure we're all so sorry why you are here, but this is the place to come. It saved my sanity!

    On the good side, I had a 4-5 cm tumor in my colon, but it had not broken through the wall and there were no positive nodes, so I was only Stage II-b. Did the surgery and took 9 of 12 scheduled "insurance" chemo treatments. So keep the faith and never, ever despair! We are all here for you and you will find some very, very smart people very willing to help in any way. Like I said, they held me up so many times and answered so many questions.

    Hang in there.

    Praying for you both,
    Kirsten
  • Mike49
    Mike49 Member Posts: 261
    similar story
    I was diagnosed in September after colonoscopy and had a hemi-colectomy in October. I had seven of seventeen lymph nodes removed that came back positive. Stage 3c, but I feel good and even though I am on a 6 month chemo regimen with FOLFOX, it has changed my life in some good ways. This is a great place to find answers. I hope your husband's tumor is small and nothing more needs to be done. Even if it needs some Chemo, we are here it help you guys, just like the people on this site have helped me. Your a very important person, I would be lost without my wife's support, she is the most important person in my life and a good partner is an essential thing.

    Ask questions, be part of this community and know this. There are people on this message board that (many) who have whipped this, we will too. Best of everything.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Welcome
    Hi, Kathleen.

    I know that both of y'all must be very scared right now, but it WILL get better. I prommise! Please keep us posted and feel free to post questions, vent feelings, whatever you need to do.

    *hugs*
    Gail
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    questions
    Hi,
    Well here come some questions. We spoke to the surgeon today and he said he just got the report from the GI doc and my husbands 4cnm tumor is right in the center of his tranverse colon. He said that he would have to take the entire transverse colon and a little bit of both sides. I think he said 3 ft. This sounds like a lot, we thought it would be 1 ft. He also mentioned something about the transverse colon being something unique because of the blood source. Does that make any sense? My husband is 5 days from surgery. Life seems so normal right now but it feels like we are ready to enter Mars. A bit scary.
    Aloha,
    Kathleen
  • questions
    Hi,
    Well here come some questions. We spoke to the surgeon today and he said he just got the report from the GI doc and my husbands 4cnm tumor is right in the center of his tranverse colon. He said that he would have to take the entire transverse colon and a little bit of both sides. I think he said 3 ft. This sounds like a lot, we thought it would be 1 ft. He also mentioned something about the transverse colon being something unique because of the blood source. Does that make any sense? My husband is 5 days from surgery. Life seems so normal right now but it feels like we are ready to enter Mars. A bit scary.
    Aloha,
    Kathleen

    This comment has been removed by the Moderator
  • Mike49
    Mike49 Member Posts: 261
    You can get by quite well with half a colon or less
    I know it is scary but they took half of my colon and I get by pretty good. The most important thing is that they take enough to get good cancer free margins on each side. I thought they were only going to take a few inches until I talked to the surgeon too. They need to get past the cancer on each side and also take a good number of lymph nodes ( usually at least twelve) with the colon. I have never heard about the blood supply and transverse colon. I get by with half a colon pretty well, sometimes the stool is a little loose, but I am never out of control. The surgery will be over soon and you can begin to get conclusive evidence about what that lesion is for sure. Try to be as positive as you can, make plans and remember after this surgery to keep living your lives, make some plans for about six months from now and look past the immediate, life will continue and still be rich and full.

    Mike
  • KathiM
    KathiM Member Posts: 8,028 Member
    I'm in California....if there is anything you need....
    I'm half way between L.A. and P.S. (Palm Springs...lol!)

    I'm sorry for the reason that you are here, but welcome!

    I lost the lower part....rectum and sigmoid colon, and descending colon was fashioned into a new rectum...I would ask the surgeon to explain more....

    Hugs, Kathi
  • tootsie1
    tootsie1 Member Posts: 5,044 Member

    questions
    Hi,
    Well here come some questions. We spoke to the surgeon today and he said he just got the report from the GI doc and my husbands 4cnm tumor is right in the center of his tranverse colon. He said that he would have to take the entire transverse colon and a little bit of both sides. I think he said 3 ft. This sounds like a lot, we thought it would be 1 ft. He also mentioned something about the transverse colon being something unique because of the blood source. Does that make any sense? My husband is 5 days from surgery. Life seems so normal right now but it feels like we are ready to enter Mars. A bit scary.
    Aloha,
    Kathleen

    I don't know
    Kathleen, I don't know what to tell you about the blood source for the transverse colon. My tumor was in my sigmoid colon, and they took about 2 ft. Talk to the doctor more, so you understand exactly what's going to happen.

    *hugs*
    Gail
  • pamalama
    pamalama Member Posts: 27

    questions
    Hi,
    Well here come some questions. We spoke to the surgeon today and he said he just got the report from the GI doc and my husbands 4cnm tumor is right in the center of his tranverse colon. He said that he would have to take the entire transverse colon and a little bit of both sides. I think he said 3 ft. This sounds like a lot, we thought it would be 1 ft. He also mentioned something about the transverse colon being something unique because of the blood source. Does that make any sense? My husband is 5 days from surgery. Life seems so normal right now but it feels like we are ready to enter Mars. A bit scary.
    Aloha,
    Kathleen

    Hang in there!

    Kathleen,
    Best of luck in your husbands surgery. I know it's scary. My hubby 41 year old seemingly healthy marathon runner had colonoscopy 11/10/08 surgery 12/2/08. His GI said stage 1 came back stage 3 2 of 11 nodes showed mico involvemnent after surgery still his
    prognosis is good. He's on Folfox plus a trial for Erbitux for 6 months. Have you gone to the colon club board for info and support I have found both this site and the colon club extremely helpful in our unfortunate journey.
    Pam
  • trainer
    trainer Member Posts: 241
    This list of terms may help.
    This all sucks, as we all know, but this discussion board is great. You might also find The Colon Club to be of interest. Just Google it. On its list of posts, I found a terminology list of many of the abbreviations that are so confusing to new Semicolons. I've copied it for you. It's on the list of this board somewhere, but buried.

    I've been to Hawaii a number of times, three when I was in the Navy. Beautiful area. So, here's your list. Hope it's of use to you.-Mike

    Many people new to this disease and new to this board can get lost in the alphabet soup of the terminology. It's almost impossible to read an abstract of a clinical trial without some of these terms and abbreviations.
    So here's a start for translation. Hopefully others will augment and amend as necessary:

    CRC - colorectal cancer
    mCRC - metastatic colorectal cancer
    DX - diagnosis
    TX - treatment
    PX - prognosis
    OS - overall survival
    PFS - progression free survival - used to describe the time that a patient is stable, or showing no worsening/progression of the disease
    DFS - disease free survival - used to describe the time that a patient is NED
    NED - no evidence of disease
    MRD - minimal residual disease
    LN - Lymph node
    PSD - peritoneal surface disease - means that the cancer has spread to the abdominal cavity and is on the surface of the organs rather than within the organs
    HIPEC - heated chemotherapy used to wash out the peritoneal/abdominal cavity
    Met - metastasis
    Lesion - something fishy, usually a tumor
    Neoplastic process - potentially cancerous activity
    Imaging - generally some type of scan or X-ray
    PS - Performance Status - a term used to describe your overall ability to function, dressing yourself, eating, physical activity, etc.

    FOLFOX - chemo regimen using 5-FU, Leucovorin, and Oxaliplatin (Eloxatin)
    Oxi - shorthand for Oxaliplatin
    FOLFIRI - chemo regimen using 5-FU, Leucovorin and Irinotecan (Camptosar)
    Xeloda (Capecitabine) - Oral 5-FU (pill form)
    XELOX - Xeloda and Oxaliplatin - also called CAPOX for CAPecitabine and OXaliplatin
    XELIRI - Xeloda and Irinotecan
    Bevacizumab (Avastin) - a drug used to stop new blood vessels from forming
    Anti-angiogenesis - the process of stopping new blood vessels from forming
    VEGF - Vascular endothelial growth factor - the part of the cancer cell dealing with new blood vessel formation
    Cetuximab (Erbitux) - HELP!
    Panitumibab (Vectibix) - HELP!
    EGFR - Epithelial Growth Factor Receptor - the key to Erbitux and Vectibix's actions
    KRAS - a part of the DNA of the cancer cell which they now know has a connection to whether the EGFR class of drugs will be effective on your cancer.
    KRASwt - Wild Type - means that the cancer's KRAS gene has not mutated and will respond to the EGFR drugs
    KRASmt - Mutant Type - means that the cancer's KRAS gene HAS mutated, and thus is unlikely to respond to the EGFR drugs

    Peripheral Neuropathy - a side effect of Oxaliplatin in which the nerves in your extremities are damaged and you experience numbness and some loss of use of your hands and feet

    Hand and Foot syndrome - a side effect of 5-FU in which your hands and feet become tender and the skin can crack and peel. Can be more common with oral 5-FU (Xeloda)

    Anti-emetic - any kind of drug that is used to combat nausea and vomiting

    Blood work - I'm punting on that one!

    Adjuvant - chemo treatment that follows surgical removal of all the cancer they can find -- it generally refers to treatment done when the patient is presumably cancer free
    Neo-adjuvant - chemo that is done prior to surgery both to potentially shrink any known lesions and also to offer some systemic treatment to prevent new lesions from cropping up

    Resection - surgically removing a big chunk of something - like your colon or your liver. It offers the best potential for a curative surgery because they can usually take out the cancer, and also some buffer zone tissue which is referred to as the "margin."

    Margins - the amount of cancer free tissue surrounding the tumor - they determine this when the resected tissue is sent to the pathology lab
    Radial margin - the amount of colon wall that was left cancer free
    Longitudinal margin - the amount of colon - lengthwise - that was left cancer free in the chunk that was removed surgically

    RFA - Radio Frequency Ablation - this is a localized treatment for tumors where a probe is inserted into the tumor and heated with radio waves to cook the cancer to death. It is often done when the lesions in question cannot be resected for some reason.
    Cryoablation - same idea as RFA, but they freeze the tumor instead of cooking it

    I'm pasting in stuff from others' posts

    ADL = activities of daily life (eating, dressing, showering, etc.)
    RCa = rectal cancer
    MRC = metastatic rectal cancer
    TNM = an attempt at universal staging evaluation that attempts to unify across countries analysis tumors and extent of spread of disease. T refers to tumor and can be modified X-4, N refers to node involvement and is modified X-2 and M refers to metastasis to distant organs, modified X, 1 or 0. The number that follows T or N indicates severity; X indicates it can't be assessed yet, and the number that follows M indicates presence (X for not assessed, 1 for present, 0 for not present.). It will be types out as TnNnMn.
    T4N2M1 means tumor spread to distant organs, node involvement to 4 or more regional lymph nodes, mets-yes and is equal to a Stage IV diagnosis. More explanation of the TNM system: http://cancerstaging.blogspot.com/2005/ ... ectum.html

    Bloodwork:
    CBC: Complete blood count, including both hematology and serum chemistry analysis. Hematology can usually be run quickly, and checks things like white counts and red blood cell counts. Serum chem analysis takes longer (the machine runs more slowly.)

    CEA - Carcino-embryonic Antigen - this is a tumor marker for Colon Cancer. Not all colon cancers emit this marker, so it is not useful for every patient. It if is a good indicator for your cancer, they can monitor the trends in your bloodwork. If it starts to trend up then they generally will go on a hunt to figure out what's up.

    APR = anterior perineal resection
    TPE or CPE = total (or complete) pelvic exenteration (used to be called pelvic evisceration). It's complete removal of all remaining organs in the pelvis, including the bladder, and usually requires double ostomies.
    LAR = low anterior resection

    TPN = total parenteral nutrition, or nutrient liquid delivered via IV or PICC line.

    CR = Complete response to chemotherapy
    PR = Partial response to chemotherapy
    PD = Progressive disease while on chemotherapy

    Refractory - resistant or unresponsive to various chemotherapy treatments

    onc = our little term to mean oncologist

    palliative = treatments necessary to make patient more comfortable or have less pain
  • ron50
    ron50 Member Posts: 1,723 Member

    questions
    Hi,
    Well here come some questions. We spoke to the surgeon today and he said he just got the report from the GI doc and my husbands 4cnm tumor is right in the center of his tranverse colon. He said that he would have to take the entire transverse colon and a little bit of both sides. I think he said 3 ft. This sounds like a lot, we thought it would be 1 ft. He also mentioned something about the transverse colon being something unique because of the blood source. Does that make any sense? My husband is 5 days from surgery. Life seems so normal right now but it feels like we are ready to enter Mars. A bit scary.
    Aloha,
    Kathleen

    blood supply
    Hi,
    Sorry you have joined the club but you are very welcome here. I had st 3 cc of the descending colon with 6 lymph nodes involved. I was discussing rad with my surgeon but he said it was not appropriate because the colon shifts and is difficult to target. I asked how they removed the colon and the lymph nodes. He described the descending colon as a tube connected to the body by a flange of tissue which contained the blood supply and the regional lymph nodes. When they remove the colon it is taken in a field with clear margins on each side of the cancer. The field includes the colon and the connective flange including blood supply and lymph nodes . It is hard to imagine what the flange is like for the transverse colon and it may well be a little more complicated but I imagine it will contain the the blood supply and regional nodes as well... Best of luck with the op . I believe you chances of a full recovery are excellent. Ron ..st3 6 nodes 11 years ca free.
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    trainer said:

    This list of terms may help.
    This all sucks, as we all know, but this discussion board is great. You might also find The Colon Club to be of interest. Just Google it. On its list of posts, I found a terminology list of many of the abbreviations that are so confusing to new Semicolons. I've copied it for you. It's on the list of this board somewhere, but buried.

    I've been to Hawaii a number of times, three when I was in the Navy. Beautiful area. So, here's your list. Hope it's of use to you.-Mike

    Many people new to this disease and new to this board can get lost in the alphabet soup of the terminology. It's almost impossible to read an abstract of a clinical trial without some of these terms and abbreviations.
    So here's a start for translation. Hopefully others will augment and amend as necessary:

    CRC - colorectal cancer
    mCRC - metastatic colorectal cancer
    DX - diagnosis
    TX - treatment
    PX - prognosis
    OS - overall survival
    PFS - progression free survival - used to describe the time that a patient is stable, or showing no worsening/progression of the disease
    DFS - disease free survival - used to describe the time that a patient is NED
    NED - no evidence of disease
    MRD - minimal residual disease
    LN - Lymph node
    PSD - peritoneal surface disease - means that the cancer has spread to the abdominal cavity and is on the surface of the organs rather than within the organs
    HIPEC - heated chemotherapy used to wash out the peritoneal/abdominal cavity
    Met - metastasis
    Lesion - something fishy, usually a tumor
    Neoplastic process - potentially cancerous activity
    Imaging - generally some type of scan or X-ray
    PS - Performance Status - a term used to describe your overall ability to function, dressing yourself, eating, physical activity, etc.

    FOLFOX - chemo regimen using 5-FU, Leucovorin, and Oxaliplatin (Eloxatin)
    Oxi - shorthand for Oxaliplatin
    FOLFIRI - chemo regimen using 5-FU, Leucovorin and Irinotecan (Camptosar)
    Xeloda (Capecitabine) - Oral 5-FU (pill form)
    XELOX - Xeloda and Oxaliplatin - also called CAPOX for CAPecitabine and OXaliplatin
    XELIRI - Xeloda and Irinotecan
    Bevacizumab (Avastin) - a drug used to stop new blood vessels from forming
    Anti-angiogenesis - the process of stopping new blood vessels from forming
    VEGF - Vascular endothelial growth factor - the part of the cancer cell dealing with new blood vessel formation
    Cetuximab (Erbitux) - HELP!
    Panitumibab (Vectibix) - HELP!
    EGFR - Epithelial Growth Factor Receptor - the key to Erbitux and Vectibix's actions
    KRAS - a part of the DNA of the cancer cell which they now know has a connection to whether the EGFR class of drugs will be effective on your cancer.
    KRASwt - Wild Type - means that the cancer's KRAS gene has not mutated and will respond to the EGFR drugs
    KRASmt - Mutant Type - means that the cancer's KRAS gene HAS mutated, and thus is unlikely to respond to the EGFR drugs

    Peripheral Neuropathy - a side effect of Oxaliplatin in which the nerves in your extremities are damaged and you experience numbness and some loss of use of your hands and feet

    Hand and Foot syndrome - a side effect of 5-FU in which your hands and feet become tender and the skin can crack and peel. Can be more common with oral 5-FU (Xeloda)

    Anti-emetic - any kind of drug that is used to combat nausea and vomiting

    Blood work - I'm punting on that one!

    Adjuvant - chemo treatment that follows surgical removal of all the cancer they can find -- it generally refers to treatment done when the patient is presumably cancer free
    Neo-adjuvant - chemo that is done prior to surgery both to potentially shrink any known lesions and also to offer some systemic treatment to prevent new lesions from cropping up

    Resection - surgically removing a big chunk of something - like your colon or your liver. It offers the best potential for a curative surgery because they can usually take out the cancer, and also some buffer zone tissue which is referred to as the "margin."

    Margins - the amount of cancer free tissue surrounding the tumor - they determine this when the resected tissue is sent to the pathology lab
    Radial margin - the amount of colon wall that was left cancer free
    Longitudinal margin - the amount of colon - lengthwise - that was left cancer free in the chunk that was removed surgically

    RFA - Radio Frequency Ablation - this is a localized treatment for tumors where a probe is inserted into the tumor and heated with radio waves to cook the cancer to death. It is often done when the lesions in question cannot be resected for some reason.
    Cryoablation - same idea as RFA, but they freeze the tumor instead of cooking it

    I'm pasting in stuff from others' posts

    ADL = activities of daily life (eating, dressing, showering, etc.)
    RCa = rectal cancer
    MRC = metastatic rectal cancer
    TNM = an attempt at universal staging evaluation that attempts to unify across countries analysis tumors and extent of spread of disease. T refers to tumor and can be modified X-4, N refers to node involvement and is modified X-2 and M refers to metastasis to distant organs, modified X, 1 or 0. The number that follows T or N indicates severity; X indicates it can't be assessed yet, and the number that follows M indicates presence (X for not assessed, 1 for present, 0 for not present.). It will be types out as TnNnMn.
    T4N2M1 means tumor spread to distant organs, node involvement to 4 or more regional lymph nodes, mets-yes and is equal to a Stage IV diagnosis. More explanation of the TNM system: http://cancerstaging.blogspot.com/2005/ ... ectum.html

    Bloodwork:
    CBC: Complete blood count, including both hematology and serum chemistry analysis. Hematology can usually be run quickly, and checks things like white counts and red blood cell counts. Serum chem analysis takes longer (the machine runs more slowly.)

    CEA - Carcino-embryonic Antigen - this is a tumor marker for Colon Cancer. Not all colon cancers emit this marker, so it is not useful for every patient. It if is a good indicator for your cancer, they can monitor the trends in your bloodwork. If it starts to trend up then they generally will go on a hunt to figure out what's up.

    APR = anterior perineal resection
    TPE or CPE = total (or complete) pelvic exenteration (used to be called pelvic evisceration). It's complete removal of all remaining organs in the pelvis, including the bladder, and usually requires double ostomies.
    LAR = low anterior resection

    TPN = total parenteral nutrition, or nutrient liquid delivered via IV or PICC line.

    CR = Complete response to chemotherapy
    PR = Partial response to chemotherapy
    PD = Progressive disease while on chemotherapy

    Refractory - resistant or unresponsive to various chemotherapy treatments

    onc = our little term to mean oncologist

    palliative = treatments necessary to make patient more comfortable or have less pain

    thanks
    Hi,
    We are 2 days from surgery and getting a bit anxious. Just trying to take it easy and relax. We have decided to have **** on a pretty strict diet. Lots of green leafy vegetables, green tea, cottage cheese and flaxseed oil, carrot juice, etc... We're thinking of a combo western medicine, naturopathic approach to his cancer. We're just in the beginning so we'll see how it goes.
    Mike thanks for the terms. It is truly incredible how many words and abbreviations are out there. We will keep this list.
    Aloha,
    Kathleen and ****
  • MoonDragon
    MoonDragon Member Posts: 183
    KathiM said:

    I'm in California....if there is anything you need....
    I'm half way between L.A. and P.S. (Palm Springs...lol!)

    I'm sorry for the reason that you are here, but welcome!

    I lost the lower part....rectum and sigmoid colon, and descending colon was fashioned into a new rectum...I would ask the surgeon to explain more....

    Hugs, Kathi

    We're close
    Hey Kathi, I didn't realize we were so close in location. I'm in Brea in Orange County!
  • MoonDragon
    MoonDragon Member Posts: 183
    trainer said:

    This list of terms may help.
    This all sucks, as we all know, but this discussion board is great. You might also find The Colon Club to be of interest. Just Google it. On its list of posts, I found a terminology list of many of the abbreviations that are so confusing to new Semicolons. I've copied it for you. It's on the list of this board somewhere, but buried.

    I've been to Hawaii a number of times, three when I was in the Navy. Beautiful area. So, here's your list. Hope it's of use to you.-Mike

    Many people new to this disease and new to this board can get lost in the alphabet soup of the terminology. It's almost impossible to read an abstract of a clinical trial without some of these terms and abbreviations.
    So here's a start for translation. Hopefully others will augment and amend as necessary:

    CRC - colorectal cancer
    mCRC - metastatic colorectal cancer
    DX - diagnosis
    TX - treatment
    PX - prognosis
    OS - overall survival
    PFS - progression free survival - used to describe the time that a patient is stable, or showing no worsening/progression of the disease
    DFS - disease free survival - used to describe the time that a patient is NED
    NED - no evidence of disease
    MRD - minimal residual disease
    LN - Lymph node
    PSD - peritoneal surface disease - means that the cancer has spread to the abdominal cavity and is on the surface of the organs rather than within the organs
    HIPEC - heated chemotherapy used to wash out the peritoneal/abdominal cavity
    Met - metastasis
    Lesion - something fishy, usually a tumor
    Neoplastic process - potentially cancerous activity
    Imaging - generally some type of scan or X-ray
    PS - Performance Status - a term used to describe your overall ability to function, dressing yourself, eating, physical activity, etc.

    FOLFOX - chemo regimen using 5-FU, Leucovorin, and Oxaliplatin (Eloxatin)
    Oxi - shorthand for Oxaliplatin
    FOLFIRI - chemo regimen using 5-FU, Leucovorin and Irinotecan (Camptosar)
    Xeloda (Capecitabine) - Oral 5-FU (pill form)
    XELOX - Xeloda and Oxaliplatin - also called CAPOX for CAPecitabine and OXaliplatin
    XELIRI - Xeloda and Irinotecan
    Bevacizumab (Avastin) - a drug used to stop new blood vessels from forming
    Anti-angiogenesis - the process of stopping new blood vessels from forming
    VEGF - Vascular endothelial growth factor - the part of the cancer cell dealing with new blood vessel formation
    Cetuximab (Erbitux) - HELP!
    Panitumibab (Vectibix) - HELP!
    EGFR - Epithelial Growth Factor Receptor - the key to Erbitux and Vectibix's actions
    KRAS - a part of the DNA of the cancer cell which they now know has a connection to whether the EGFR class of drugs will be effective on your cancer.
    KRASwt - Wild Type - means that the cancer's KRAS gene has not mutated and will respond to the EGFR drugs
    KRASmt - Mutant Type - means that the cancer's KRAS gene HAS mutated, and thus is unlikely to respond to the EGFR drugs

    Peripheral Neuropathy - a side effect of Oxaliplatin in which the nerves in your extremities are damaged and you experience numbness and some loss of use of your hands and feet

    Hand and Foot syndrome - a side effect of 5-FU in which your hands and feet become tender and the skin can crack and peel. Can be more common with oral 5-FU (Xeloda)

    Anti-emetic - any kind of drug that is used to combat nausea and vomiting

    Blood work - I'm punting on that one!

    Adjuvant - chemo treatment that follows surgical removal of all the cancer they can find -- it generally refers to treatment done when the patient is presumably cancer free
    Neo-adjuvant - chemo that is done prior to surgery both to potentially shrink any known lesions and also to offer some systemic treatment to prevent new lesions from cropping up

    Resection - surgically removing a big chunk of something - like your colon or your liver. It offers the best potential for a curative surgery because they can usually take out the cancer, and also some buffer zone tissue which is referred to as the "margin."

    Margins - the amount of cancer free tissue surrounding the tumor - they determine this when the resected tissue is sent to the pathology lab
    Radial margin - the amount of colon wall that was left cancer free
    Longitudinal margin - the amount of colon - lengthwise - that was left cancer free in the chunk that was removed surgically

    RFA - Radio Frequency Ablation - this is a localized treatment for tumors where a probe is inserted into the tumor and heated with radio waves to cook the cancer to death. It is often done when the lesions in question cannot be resected for some reason.
    Cryoablation - same idea as RFA, but they freeze the tumor instead of cooking it

    I'm pasting in stuff from others' posts

    ADL = activities of daily life (eating, dressing, showering, etc.)
    RCa = rectal cancer
    MRC = metastatic rectal cancer
    TNM = an attempt at universal staging evaluation that attempts to unify across countries analysis tumors and extent of spread of disease. T refers to tumor and can be modified X-4, N refers to node involvement and is modified X-2 and M refers to metastasis to distant organs, modified X, 1 or 0. The number that follows T or N indicates severity; X indicates it can't be assessed yet, and the number that follows M indicates presence (X for not assessed, 1 for present, 0 for not present.). It will be types out as TnNnMn.
    T4N2M1 means tumor spread to distant organs, node involvement to 4 or more regional lymph nodes, mets-yes and is equal to a Stage IV diagnosis. More explanation of the TNM system: http://cancerstaging.blogspot.com/2005/ ... ectum.html

    Bloodwork:
    CBC: Complete blood count, including both hematology and serum chemistry analysis. Hematology can usually be run quickly, and checks things like white counts and red blood cell counts. Serum chem analysis takes longer (the machine runs more slowly.)

    CEA - Carcino-embryonic Antigen - this is a tumor marker for Colon Cancer. Not all colon cancers emit this marker, so it is not useful for every patient. It if is a good indicator for your cancer, they can monitor the trends in your bloodwork. If it starts to trend up then they generally will go on a hunt to figure out what's up.

    APR = anterior perineal resection
    TPE or CPE = total (or complete) pelvic exenteration (used to be called pelvic evisceration). It's complete removal of all remaining organs in the pelvis, including the bladder, and usually requires double ostomies.
    LAR = low anterior resection

    TPN = total parenteral nutrition, or nutrient liquid delivered via IV or PICC line.

    CR = Complete response to chemotherapy
    PR = Partial response to chemotherapy
    PD = Progressive disease while on chemotherapy

    Refractory - resistant or unresponsive to various chemotherapy treatments

    onc = our little term to mean oncologist

    palliative = treatments necessary to make patient more comfortable or have less pain

    That was very thoughtful of
    That was very thoughtful of you to post that for Kathleen! I wish I'd had that when I first started this er....adventure! :)
  • MoonDragon
    MoonDragon Member Posts: 183
    Kathleen, you've definately
    Kathleen, you've definately come to the right place and we welcome you and your husband with open arms and hearts (shorter colon = bigger heart! hehehe)! I'm sorry it's under these circumstances but I'm glad you've reached out! My heart goes out to you! I personally think it's so much harder on the caregiver or loved one of the cancer patient than it is on the patient. I watched my husband struggle with feeling helpless as to my prognosis and what I was going through during treatment.

    I second Kathy's note, I'm in California too in Orange County, about a half an hour from LA. If there's anything you need, let us know. If you need to get away from it all for awhile, come for dinner with someone who's been through it and is on the other side. There is hope!! We can help you with where to find things in LA too. My hubby has a GPS unit (he's a limo driver) and can help you with directions if you need to go anywhere. Just give a hollar. mmurray2@csulb.edu or lukotheirish325@yahoo.com If any of the rest of you would like my email, please feel free to write it down. I don't see the option of sending emails like we did on the old system.

    Just remember cancer isn't an automatic death sentence. I love to read Ron's posts as he's 11 years cancer free. He gives us all hope! Stages will give you the basic idea of where you're at but they aren't the end all be all. I'm inbetween two stages. My cancer perforated my colon but it didn't enter any other organs or lymphnodes so I'm more than a II but not quite a III. It wasn't contained in the colon but it hadn't moved on yet either. I call myself a stage II and a half which goes hand in hand with my half of a colon! Hey you gotta laugh where you can!

    Please keep us posted with your husbands prognosis and know that we'll all be thinking of the two of you and praying for you!!

    Hugs!

    Jorie