New Diagnosis of stage IV colon cancer

cwork
cwork Member Posts: 37
edited March 2014 in Colorectal Cancer #1
Hi all, I am writing this for my sister as she is in shock from her diagnosis and needs help formulating a plan. She is 45 years old, in otherwise extremely good health. Exercises 3 or more days a week, petite and not overweight. Very healthy lifestyle making this all the more confusing. Anyway, she when in for what she thought was removal of cyst in an ovary only to come out of surgery with complete hysterectomy, 4 inches of colon removed, and diagnosis of stage IV colon cancer. She has not had PET scan yet, but is to have it this week. She lives in the south and the hospital closest to them with cancer reputation is Vanderbilt in Nashville so that is where they are planning on going. I am, however, not sure that is the best place for her. I think she needs to try to get into MD Anderson, Sloan, or at least one of the top 10 rated hospitals for cancer. They can afford the travel etc and I think they would be agreeable to it, but when the docs don't even bring that up I think they just don't think it is necessary. Her doc that did surgery was GYN guy as she originally thought it was a GYN problem, so he does recommend she see colon specialists, but he has not said anything about one of the leading hospitals. What are your thoughts on this? I know she needs to start treatment soon, but if no one impresses the need on her to to do anything differently I think she will just go with Vanderbilt. I looked them up and while they are an excellent hospital they are ranked #18 for cancer. Should she go for better than that? I think her age and otherwise excellent health is to her advantage and she should do all she can to fight this. I also know the final choice is hers and I will not try and force anything on her, however I would like for her to make an informed decision and not just go here or there because that is closesr to home and nothing else is suggested. Any help or advice is much appreciated.
«1

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Welcome
    You are a very special sister to be here trying to help her find out all you can.

    I guess I am a bit surprised with what happened to your sis in surgery. Seems like it was definately unusual for a doc to go in without other testing such as a CAT scan to know what was what.

    There is a member here, Buzzard, who is currently working with Vandy. He is also stage 4. I am sure he will be posting to help give you his assessment of docs and treatments there.

    Any additional treatments deemed necessary usually don't start until after healing from surgery, which could be 6 weeks or more.

    Sis does need additional docs on her team, regardless of from where, than her gyno. Craig (Sundanceh) here will also likely be on to help with types and how to pick. He is also stage 4.

    If you can, encourage your sis to join us here. There is a variety of experience in the fight against this disease and everyone is more than willing to share and give support.

    You come back too. We have many caregivers and family members, who like you, just want the best for their loved one.

    Marie who loves kitties
  • nudgie
    nudgie Member Posts: 1,478
    Welcome
    to our family and let your sister know we are hear for both of you 365; 24/7. Now on to your post.

    I was DX with Stage II Colon Cancer in 2006 (42 yrs old) and received my cancer care at a local hospital where I live. I had my surgeries at the local hospital as well. I was lucky enough to receive the care of an excellent surgeon and Onc. Dr. The Onc Dr. came aboard the Onc Unit at the local hospital in Feb 06 and I was DX in July 06.

    I too was very health aware and worked out regularly throughout my teen and young adult live. There area also vegans on this board that are survivors. Cancer does not discrimminate or care how healthy you are. It relates to you (cells) and your DNA.

    There are many terrific cancer hospitals, centers, etc., throughout the US. The "key" is finding the care team that your sister feels comfortable with and that cares about the patient. Keeping in mind, that the patient still needs to take charge of their own health and body.

    Just because the cancer hospital or center is ranked #18, doesn't mean she will receive lower than average care, but if she is NOT happy with the response, answers, team, etc., she needs to get 2nd, 3rd opinions, until she finds a team that suits her.

    She is starting a new path (journey) in her life that will forever change her. She will need support, guideance and help along the way. Friends and family are so important during this time.
  • abrub
    abrub Member Posts: 2,174 Member
    I, too, was diagnosed during "routine" gyn surgery
    My "cyst/fibroid" turned out to be a metastatic tumor originating from the Appendix - Appendix cancer, not colon cancer. Is it possible that her cancer is appendiceal in origin? That falls under the colorectal umbrella, but its treatment differs. It is quite rare, and not many oncologists are familiar with its peculiarities.

    Your sister must get another opinion, and have her slides sent to a major medical center such as Memorial Sloan Kettering in NYC or MD Anderson, where they can ascertain if the cancer is colon cancer or appendix cancer.

    In my situation, the tumor type was low-grade mucinous adenocarcinoma, and my drs had no problem with me taking time to find out what was best. I met with several experts, and ended at MSK, with my follow-up surgery and treatment begun 4 months after my diagnosis.

    I did have one consultation with an "expert" who wanted me to start chemo immediately, but the other experts felt that in my case, there was no hurry, and they wanted me to start with IntraPeritoneal chemo. Click on my name to see my blog and read my story. By the way, my dx was 3 1/2 years ago, and I'm doing great, with a great long-term prognosis despite the amount tumor spread.

    Good luck with all of this. We all know how your heads are spinning right now.

    Alice
  • Nana b
    Nana b Member Posts: 3,030
    abrub said:

    I, too, was diagnosed during "routine" gyn surgery
    My "cyst/fibroid" turned out to be a metastatic tumor originating from the Appendix - Appendix cancer, not colon cancer. Is it possible that her cancer is appendiceal in origin? That falls under the colorectal umbrella, but its treatment differs. It is quite rare, and not many oncologists are familiar with its peculiarities.

    Your sister must get another opinion, and have her slides sent to a major medical center such as Memorial Sloan Kettering in NYC or MD Anderson, where they can ascertain if the cancer is colon cancer or appendix cancer.

    In my situation, the tumor type was low-grade mucinous adenocarcinoma, and my drs had no problem with me taking time to find out what was best. I met with several experts, and ended at MSK, with my follow-up surgery and treatment begun 4 months after my diagnosis.

    I did have one consultation with an "expert" who wanted me to start chemo immediately, but the other experts felt that in my case, there was no hurry, and they wanted me to start with IntraPeritoneal chemo. Click on my name to see my blog and read my story. By the way, my dx was 3 1/2 years ago, and I'm doing great, with a great long-term prognosis despite the amount tumor spread.

    Good luck with all of this. We all know how your heads are spinning right now.

    Alice

    Welcome to the club no one wants to be a member of
    Welcome, so sorry to hear about your sister. Please let her know this is a great site to ask questions. I am sure she has a lot of them. For now she needs to recover. I also had surgery prior to Chemo.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252
    Not alone
    I was diagnosed at age 47, mostly vegetarian (some fish, seafood and white poultry), non-smoker, never overweight, plenty of exercise, with an organic garden most of my life.

    Unfortunately the education about colon cancer to the public is not good. It is NOT some steak gobbling, beer guzzling, pack-a-day smoking, fat old man's disease.

    You can get great care at many facilities. Unless a special procedure is needed that isn't done at her choice of closer hospital, there is nothing wrong with her going to Vanderbilt. It is a very good facility. You have to factor in the stress of traveling for treatment too. Most likely she will end up on bi-weekly chemo, and there is no need to be traveling for that. She's already had the surgery which is what some people might choose to travel for.

    She needs to meet with an oncologist. If she isn't comfortable with them, then try another. She'll have to recover from surgery before starting chemo, so that will give her plenty of time to research and find out about her treatments.

    The best thing you can do is support her, but keep in mind that SHE is the patient and needs to be the one in control of where she goes for treatment, and what treatments she chooses. She is very lucky to have you in her corner and helping get information and supporting her.

    I'd suggest sending her to this site, and also to www.ColonClub.com to post her questions and get support. The other site was started by young women with colon cancer and is geared to those diagnosed under age 50 (the usual age for screening to start).
  • AnneCan
    AnneCan Member Posts: 3,673
    Welcome cwork!
    You have found a good place to come + visit; there are a lot of very helpful people here. Your sister is lucky to have you as an advocate. I am Canadian, so I am not as familiar with all the US cancer centres.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Hi
    I just want to welcome you to the board and tell you that I'm very sorry about your sister's diagnosis. It's possible to get good care at smaller, more local hospitals, but it means a lot to feel very comfortable with the surgeon and the oncologist. And if your sister feels like she is not sure about what a local doctor is suggesting, she is certainly within her rights to request a second opinion.

    *hugs*
    Gail
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    tootsie1 said:

    Hi
    I just want to welcome you to the board and tell you that I'm very sorry about your sister's diagnosis. It's possible to get good care at smaller, more local hospitals, but it means a lot to feel very comfortable with the surgeon and the oncologist. And if your sister feels like she is not sure about what a local doctor is suggesting, she is certainly within her rights to request a second opinion.

    *hugs*
    Gail

    cwork...................CSN....excellent first choice .....
    Hi my name is Clift, they call me Buzzard, my wife calls me......well lets just say honey for now LOL......First things first, you have to make sure that you know things are going to be ok, then they will be. OK, get her and yourself ready for a year of whirlwind dr appts, scans, blood tests etc. It goes by fast, and all the Drs are very meticulous with their expertise. Some are secure with only the expertise they grew up surrounded with. Others are branching out, the cutting edge of medicines and routines. There are so many choices, so many hospitals that have a menagerie of this and that. I started in my hometown where cancer surgeries for colon cancer are mostly special surgeries done maybe 6 times a year with most surgeons here, In Nashville I am thinking that there are over 300,000 cancer patients that come through these doors. Nashville's Vanderbilt-Ingram Cancer Center is a teaching hospital, it is also a hospital that is not a single Dr but a team of 4-8 specialists that all conference on each situation to come up with the best scenario for that specific patient and what brings the most normal back into their live when returning into society. Although you will pick one surgeon to go with in any instance all of them decide as one what will most benefit the patient. Example, I had rectal cancer...I had my spincter removed, rectum removed, and my tail sewn shut, and have a permanent ostomy. But on my team with my colorectal specialist was a specialist that only dealt with spincter and anal cancer surgeries, another was a biomedical engineer (my Dr)I also had 2 others that dealt with intestinal, rectal reconstruction. So, what you get at Vandy is a Dr that has a team beside him/her and they always work as a team......Oncology, same deal. I just moved my Oncologist to Vandy and instaed of having one here, I now have 1 in Vandy but she also conferences with 3 others there for the best in care. If its bedside manner you like, it is there as well, but the expertise is top notch...I have bet my life on it.....so far so good......
    Don't get me wrong, if there ever happens to be brain lesions involved, its off to MD Anderson I go, for I think they are the best in the brain tumor field as of right now...
    I had a lung growth that was a met from CRC. I just had it removed at Vandy. All nodes clear and margins clear as well so Im back at it again....I call it my Vandy weight loss program, I lose about 1/2 pound each surgery but all is well and I am very very secure in good feelings about my team now....If you need anything at all PM me through our private messages or simply put it out here and I will help you in anyway I can. Especially about Nashvilles Vanderbilt Ingram Cancer Center.....Don't guess , just ask...Love and hope to all of you......Buzz (Clift)


    PS....I have names, numbers, and first hand knowledge of who to speak with and easy ways to get around there as well as tips,etc.....where in the south does she live....I am in Paducah Ky...about 2.5 hrs away from Nashville and it is positively the best move I have ever made, bar none........
  • lizdeli
    lizdeli Member Posts: 569
    Buzzard said:

    cwork...................CSN....excellent first choice .....
    Hi my name is Clift, they call me Buzzard, my wife calls me......well lets just say honey for now LOL......First things first, you have to make sure that you know things are going to be ok, then they will be. OK, get her and yourself ready for a year of whirlwind dr appts, scans, blood tests etc. It goes by fast, and all the Drs are very meticulous with their expertise. Some are secure with only the expertise they grew up surrounded with. Others are branching out, the cutting edge of medicines and routines. There are so many choices, so many hospitals that have a menagerie of this and that. I started in my hometown where cancer surgeries for colon cancer are mostly special surgeries done maybe 6 times a year with most surgeons here, In Nashville I am thinking that there are over 300,000 cancer patients that come through these doors. Nashville's Vanderbilt-Ingram Cancer Center is a teaching hospital, it is also a hospital that is not a single Dr but a team of 4-8 specialists that all conference on each situation to come up with the best scenario for that specific patient and what brings the most normal back into their live when returning into society. Although you will pick one surgeon to go with in any instance all of them decide as one what will most benefit the patient. Example, I had rectal cancer...I had my spincter removed, rectum removed, and my tail sewn shut, and have a permanent ostomy. But on my team with my colorectal specialist was a specialist that only dealt with spincter and anal cancer surgeries, another was a biomedical engineer (my Dr)I also had 2 others that dealt with intestinal, rectal reconstruction. So, what you get at Vandy is a Dr that has a team beside him/her and they always work as a team......Oncology, same deal. I just moved my Oncologist to Vandy and instaed of having one here, I now have 1 in Vandy but she also conferences with 3 others there for the best in care. If its bedside manner you like, it is there as well, but the expertise is top notch...I have bet my life on it.....so far so good......
    Don't get me wrong, if there ever happens to be brain lesions involved, its off to MD Anderson I go, for I think they are the best in the brain tumor field as of right now...
    I had a lung growth that was a met from CRC. I just had it removed at Vandy. All nodes clear and margins clear as well so Im back at it again....I call it my Vandy weight loss program, I lose about 1/2 pound each surgery but all is well and I am very very secure in good feelings about my team now....If you need anything at all PM me through our private messages or simply put it out here and I will help you in anyway I can. Especially about Nashvilles Vanderbilt Ingram Cancer Center.....Don't guess , just ask...Love and hope to all of you......Buzz (Clift)


    PS....I have names, numbers, and first hand knowledge of who to speak with and easy ways to get around there as well as tips,etc.....where in the south does she live....I am in Paducah Ky...about 2.5 hrs away from Nashville and it is positively the best move I have ever made, bar none........

    MD Anderson
    I was treated at MD Anderson. I have a lot of confidence in them and they work as a team as well. If you need any info about MDA please let me know.

    Liz
  • Lori-S
    Lori-S Member Posts: 1,277
    cwork
    Welcome to the forum. There are many otherwise healthy people with colon cancer. It really caught me off guard as I was always the healthy one and caregiver to the sick ones.

    I'm sure if your sister "shops" around she will find the team/center that feels right for her. Since she is a stage IV and may require more treatment, she might feel better being closer to home since it would ease some of the incovenience (there's a lot of that to consider). Or she might prefer or feel better with a team that is further away just because them might be a better fit for her. It is most important that she feels good with her team and trusts that they are the right fit for her. You are right, it is her decision. Remember she can change her mind if things don't seem to work for her either way.

    I am hoping for the best for your sister and sending out some good vibes to you too.
  • PhillieG
    PhillieG Member Posts: 4,866
    Greetings
    Sorry to hear of your sister's diagnosis. I was dx getting close to 7 years ago with stage IV colon cancer. Caught me off guard too. I was in good health (or so I thought) with no really nasty habits or anything.

    I would suggest that she gets to the best cancer care place she can. As Sloan Kettering says: "Where you are treated first makes all of the difference". I could not agree with that more.
    My oncologist there is Dr Nancy Kemeny. When I was first diagnosed, Sloan was not in my HMO. I went there to consult with Dr Kemeny and I found an oncologist at another hospital (that had a good reputation) and found a good oncologist (who did not graduate from Grenada - no offense to any Grenades out there...) who had good credentials from a leading medical institution who wasn't too old to be stuck in their ways or too young to still be shitting yellow and they also couldn't have a huge ego either. I found a great doctor who was willing to follow Dr K's treatment plan (which by the way was what he would have done if I had not gone to her for consultations)

    Now I am down to 1 small spot in my left lung after close to 7 years of treatment. A satisfied customer...

    I hope she can find some great care. Trust, and a competent doctor can get one very far.
    -phil
  • cwork
    cwork Member Posts: 37
    PhillieG said:

    Greetings
    Sorry to hear of your sister's diagnosis. I was dx getting close to 7 years ago with stage IV colon cancer. Caught me off guard too. I was in good health (or so I thought) with no really nasty habits or anything.

    I would suggest that she gets to the best cancer care place she can. As Sloan Kettering says: "Where you are treated first makes all of the difference". I could not agree with that more.
    My oncologist there is Dr Nancy Kemeny. When I was first diagnosed, Sloan was not in my HMO. I went there to consult with Dr Kemeny and I found an oncologist at another hospital (that had a good reputation) and found a good oncologist (who did not graduate from Grenada - no offense to any Grenades out there...) who had good credentials from a leading medical institution who wasn't too old to be stuck in their ways or too young to still be shitting yellow and they also couldn't have a huge ego either. I found a great doctor who was willing to follow Dr K's treatment plan (which by the way was what he would have done if I had not gone to her for consultations)

    Now I am down to 1 small spot in my left lung after close to 7 years of treatment. A satisfied customer...

    I hope she can find some great care. Trust, and a competent doctor can get one very far.
    -phil

    I am overwhelmed with the
    I am overwhelmed with the response and concern on this forum. This is good for me and I am not even the one with this illness. My sister is having her PET scan this morning, so I have been prayerful all night and day. This consumes my thoughts and it is not even me. I can only imagine how it must feel to her and those of you here that live with this. I suppose with time it gets easier. It has only been 2 weeks. My sister and I are pretty close. I am 4 years older so we didn't really run together growing up, but we have kids the same ages and have traveled together almost every summer as adults as her kids and mine are the same ages. We don't live close to each other, (about 5 hours drive.) My greatest fear right now is if she gets her PET scan results back and it shows mets to liver or lungs that she won't even fight it. I have heard her say things that make me fear that. After she gets the results in a day or so I will talk to her about this forum and ask her to come on here and read these post and see all the help and support that is there for her. The advice here is invaluable, and I think it makes on feel less "alone" in the battle. I think the biggest decision she must make soon is where to go for treatment. I was going to suggest MD Anderson or Sloan or at least one of the top 10 cancers centers in US. However, I see from reading here that there are other things to consider and she is only 2 hrs. away from Vanderbilt in Nashville. I really do appreciate the advice from Buzz about Vandy. Maybe that would be the best place for her after-all. I do think a lot of travel to strange cities would be hard on her. She is a small town girl, with strong ties to church and community, and loves being at HOME. She has a large support group in her hometown of friends and her husbands family lives there as well and they are very close to her. Thank you again for the words of wisdom, encouragement, and prayers. May God bless each of you here for your concern for others and your strength and determination to fight this illness. You are all a blessing and inspiration to me.
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    cwork said:

    I am overwhelmed with the
    I am overwhelmed with the response and concern on this forum. This is good for me and I am not even the one with this illness. My sister is having her PET scan this morning, so I have been prayerful all night and day. This consumes my thoughts and it is not even me. I can only imagine how it must feel to her and those of you here that live with this. I suppose with time it gets easier. It has only been 2 weeks. My sister and I are pretty close. I am 4 years older so we didn't really run together growing up, but we have kids the same ages and have traveled together almost every summer as adults as her kids and mine are the same ages. We don't live close to each other, (about 5 hours drive.) My greatest fear right now is if she gets her PET scan results back and it shows mets to liver or lungs that she won't even fight it. I have heard her say things that make me fear that. After she gets the results in a day or so I will talk to her about this forum and ask her to come on here and read these post and see all the help and support that is there for her. The advice here is invaluable, and I think it makes on feel less "alone" in the battle. I think the biggest decision she must make soon is where to go for treatment. I was going to suggest MD Anderson or Sloan or at least one of the top 10 cancers centers in US. However, I see from reading here that there are other things to consider and she is only 2 hrs. away from Vanderbilt in Nashville. I really do appreciate the advice from Buzz about Vandy. Maybe that would be the best place for her after-all. I do think a lot of travel to strange cities would be hard on her. She is a small town girl, with strong ties to church and community, and loves being at HOME. She has a large support group in her hometown of friends and her husbands family lives there as well and they are very close to her. Thank you again for the words of wisdom, encouragement, and prayers. May God bless each of you here for your concern for others and your strength and determination to fight this illness. You are all a blessing and inspiration to me.

    Take heart
    Yes the first few weeks after diagnosis are difficult for patient and for loved ones. I don't know that you ever get over the feelings, but you do come to recognize that what you have to do is take a deep breath, stand up straight and walk into this with the determination that you will give it your best shot.

    I hope that your sister will come here to talk about her fears, concerns, etc. There are some like myself who had surgery for tumor removal and nothing more. There are others who have had surgery and treatments with radiation and chemo. There are others who have come to the end of standard treatment options and are in clinical trials. There are others who feel that alternative options such as juicing or Traditional Chinese Medicine offer them their best solutions, with or without other Western treatments. Here she can explore all those things, at least from the perspective of asking questions, and at least getting an overview of what she might want to do.

    Here she can also find folks who have faced what she is, or worse, and who years later are still around to enjoy their family and their life. That is not to say they haven't worked their butts off to be able to do that, because in one way or another they have. The other thing they have in common is they didn't give up in the face of adversity. They all hope to come out a winner against cancer.

    Take care and take heart and take it day by day.

    Marie who loves kitties
  • Lori-S
    Lori-S Member Posts: 1,277
    cwork said:

    I am overwhelmed with the
    I am overwhelmed with the response and concern on this forum. This is good for me and I am not even the one with this illness. My sister is having her PET scan this morning, so I have been prayerful all night and day. This consumes my thoughts and it is not even me. I can only imagine how it must feel to her and those of you here that live with this. I suppose with time it gets easier. It has only been 2 weeks. My sister and I are pretty close. I am 4 years older so we didn't really run together growing up, but we have kids the same ages and have traveled together almost every summer as adults as her kids and mine are the same ages. We don't live close to each other, (about 5 hours drive.) My greatest fear right now is if she gets her PET scan results back and it shows mets to liver or lungs that she won't even fight it. I have heard her say things that make me fear that. After she gets the results in a day or so I will talk to her about this forum and ask her to come on here and read these post and see all the help and support that is there for her. The advice here is invaluable, and I think it makes on feel less "alone" in the battle. I think the biggest decision she must make soon is where to go for treatment. I was going to suggest MD Anderson or Sloan or at least one of the top 10 cancers centers in US. However, I see from reading here that there are other things to consider and she is only 2 hrs. away from Vanderbilt in Nashville. I really do appreciate the advice from Buzz about Vandy. Maybe that would be the best place for her after-all. I do think a lot of travel to strange cities would be hard on her. She is a small town girl, with strong ties to church and community, and loves being at HOME. She has a large support group in her hometown of friends and her husbands family lives there as well and they are very close to her. Thank you again for the words of wisdom, encouragement, and prayers. May God bless each of you here for your concern for others and your strength and determination to fight this illness. You are all a blessing and inspiration to me.

    cwork
    You may have to give her a little time to get used to the cancer diagnosis. It can really hit the patient hard and the first weeks or even months can be so surreal. I thought/said things when I was first diagnosed that I have since changed my mind about as I’ve learned more and become more in touch with what cancer means to me and my life. So give her a little time and allow her to work through some of this. It is a lot to take in and process.

    I know that you love her and want only the best for her. Just be supportive as best you can so she can feel safe and prepared to make tough decisions that are good for her. It must be so tough to watch when you feel powerless and on the sidelines. You seem like such a good sister. Be sure to take care of yourself too.
  • pepebcn
    pepebcn Member Posts: 6,331
    Lori-S said:

    cwork
    You may have to give her a little time to get used to the cancer diagnosis. It can really hit the patient hard and the first weeks or even months can be so surreal. I thought/said things when I was first diagnosed that I have since changed my mind about as I’ve learned more and become more in touch with what cancer means to me and my life. So give her a little time and allow her to work through some of this. It is a lot to take in and process.

    I know that you love her and want only the best for her. Just be supportive as best you can so she can feel safe and prepared to make tough decisions that are good for her. It must be so tough to watch when you feel powerless and on the sidelines. You seem like such a good sister. Be sure to take care of yourself too.

    Welcome Cwork,
    We are here to fore help you in any question just ask!
    Hugs.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    pepebcn said:

    Welcome Cwork,
    We are here to fore help you in any question just ask!
    Hugs.

    Cindy....one more thing
    Knowledge is the key to being proactive in your own treatment regimen. What to look out for and what to try and go for is all knowledge based. This is a great knowledge based forum with people that are brilliant with their ways of dealing with cancer and knowing that the Drs work for you, they will do as you wish if that is what you wish but you need to have a knowledge base so to be able to control your outcomes and treatments...That knowledge base is here, in CSN, and you as well as you sis need to start today asking a barrage of questions to advance your knowledge base on "UP TO DATE" treatments that are now out there that weren't 1 year ago. Its a fast pace disease with fast pace treatments coming in all the time. 10-15 years ago are now archaic due to what they have out now for us....Don't surf the net, its all old stuff...Its all here for you and sis, its all here.......Love to you both, Clift
  • hannahznana
    hannahznana Member Posts: 1

    Welcome
    You are a very special sister to be here trying to help her find out all you can.

    I guess I am a bit surprised with what happened to your sis in surgery. Seems like it was definately unusual for a doc to go in without other testing such as a CAT scan to know what was what.

    There is a member here, Buzzard, who is currently working with Vandy. He is also stage 4. I am sure he will be posting to help give you his assessment of docs and treatments there.

    Any additional treatments deemed necessary usually don't start until after healing from surgery, which could be 6 weeks or more.

    Sis does need additional docs on her team, regardless of from where, than her gyno. Craig (Sundanceh) here will also likely be on to help with types and how to pick. He is also stage 4.

    If you can, encourage your sis to join us here. There is a variety of experience in the fight against this disease and everyone is more than willing to share and give support.

    You come back too. We have many caregivers and family members, who like you, just want the best for their loved one.

    Marie who loves kitties

    colon cancer
    My husband was diagnosed with stage IV colon cancer in August 2007. He almost didn't survive the first surgery. It took months with multiple organ failures, MERSA, had to be trached and now on his 3rd chemo (5FU and CPT-11). This one has been so hard on all of us. I was his caregiver when the Doctors gave up and suggested hospice. I fought and prayed. I have spent the last 3 years crying, praying and worrying. I don't have anyone to talk to. I don't want to worry him or my mother. The steriods that they give him with each chemo is causing manic symptoms and keeping me upset. I don't know how to handle this anymore. I love him with all my heart but I can't keep on being screamed at or worrying if my children are safe with him. If there is anyone with help or advise... Please!
  • Lori-S
    Lori-S Member Posts: 1,277

    colon cancer
    My husband was diagnosed with stage IV colon cancer in August 2007. He almost didn't survive the first surgery. It took months with multiple organ failures, MERSA, had to be trached and now on his 3rd chemo (5FU and CPT-11). This one has been so hard on all of us. I was his caregiver when the Doctors gave up and suggested hospice. I fought and prayed. I have spent the last 3 years crying, praying and worrying. I don't have anyone to talk to. I don't want to worry him or my mother. The steriods that they give him with each chemo is causing manic symptoms and keeping me upset. I don't know how to handle this anymore. I love him with all my heart but I can't keep on being screamed at or worrying if my children are safe with him. If there is anyone with help or advise... Please!

    Hannahznana
    I first want to welcome you to the board and am so sorry that you have to be here and are having such a terrible time right now. I really would hope that you are discussing the problems he is having with the steroids with his doctors. They need to know these sort of things as there may be some relief for the symptoms. Also, does your center or oncologist offer some counseling as well? I would first speak with the doctors about the steroid side effects and then see about getting some outside counseling to get through this.

    I can really tell you are frustrated and worn down. You picked a great place to come for some support and information. I wish you had posted by starting a new thread. I'm hoping that your post doesn't get lost in this one as I'm sure there are a lot of people here that would want to welcome and support you.

    I will send out some very good vibes and prayers that you get some help with the situation soon and that you and your husband can find some relief.
  • geotina
    geotina Member Posts: 2,111
    cwork:
    A tad late but welcome to the board. My hubby was diagnosed Stage IV, mets to liver and lungs and the treatment we received out of the gate, colon resection followed by chemo, would have been the same no matter where we went. We have received excellent care. George is now 18 months out from diagnosis and doing very well, continuing to work full time and his quality of life is excellent. Now, should things take a serious turn for the worse and our docs are unsure of how to proceed, then we would seek the services of a more aggressive center, for us, that would probably be the University of Michigan or Karmanos Cancer Center (Michigan) or M. D. Anderson.

    I have heard good things about Vanderbuilt so don't count them out too soon. Take a deep breath for the next few weeks will be a whirlwind and come on here with any questions or concerns you may have.

    Take care - Tina
  • immbeloved
    immbeloved Member Posts: 37
    geotina said:

    cwork:
    A tad late but welcome to the board. My hubby was diagnosed Stage IV, mets to liver and lungs and the treatment we received out of the gate, colon resection followed by chemo, would have been the same no matter where we went. We have received excellent care. George is now 18 months out from diagnosis and doing very well, continuing to work full time and his quality of life is excellent. Now, should things take a serious turn for the worse and our docs are unsure of how to proceed, then we would seek the services of a more aggressive center, for us, that would probably be the University of Michigan or Karmanos Cancer Center (Michigan) or M. D. Anderson.

    I have heard good things about Vanderbuilt so don't count them out too soon. Take a deep breath for the next few weeks will be a whirlwind and come on here with any questions or concerns you may have.

    Take care - Tina

    i'm the sister
    hello everyone, i am quite the topic of conversation today, i have recently learned that my large ovarian cyst was secondary to colon cancer which had spread to lymph nodes. i had a pet scan yesterday and have failed the test, and as a historically good student this alone bothers me. the first words my doctor said were "i don't like it", then bottom line i have 4 large liver masses and a mass in my pelvis which the doctor thinks may be a false positive due to the colon resection. so i am off to Vanderbilt to see Emily Chan thursday. i'm sure i will be a frequent visitor with my soul sisters and brothers here. my sister has really taken care of me both at bedside and a across the internets.

    love to all,

    amber