Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 Welcome Karima,to our group. I wish you did not need to be here,but it is a great place to vent,share and gather information. In regards to the differing info you're getting from your docs....either get them together or better yet take yourself to a major cancer center where you will have a team(oncologist,surgeon,others)to organize your care and plan the best treatment plan for you. Ask lots of questions and keep asking until you understand the answers you are given.If you go to the links bar on this group site there is a multitude of information including a list of major cancer centers if you don't have one now. Let us know how you are doing. Hugs & Prayers to All, H S/O 'Hubby,52,diagnosed 7/31/03 inoperable stage IV cc Third-line chemo of Avastin/CPT-11/5FU/LV for 3 mo, 5/20/04 CT scans show significant progression of disease,CEA:1060 6/2/04 started " Plan D " ,Folfox 4 > Hi, > > My name is Karima and I live in Pennsylvania. I was diagnosed with > rectal cancer on May 27th. We are at the point where one doctor says > one thing and one says another. > > What do you do with that? > > Thank you, > Karima Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 Welcome Karima,to our group. I wish you did not need to be here,but it is a great place to vent,share and gather information. In regards to the differing info you're getting from your docs....either get them together or better yet take yourself to a major cancer center where you will have a team(oncologist,surgeon,others)to organize your care and plan the best treatment plan for you. Ask lots of questions and keep asking until you understand the answers you are given.If you go to the links bar on this group site there is a multitude of information including a list of major cancer centers if you don't have one now. Let us know how you are doing. Hugs & Prayers to All, H S/O 'Hubby,52,diagnosed 7/31/03 inoperable stage IV cc Third-line chemo of Avastin/CPT-11/5FU/LV for 3 mo, 5/20/04 CT scans show significant progression of disease,CEA:1060 6/2/04 started " Plan D " ,Folfox 4 > Hi, > > My name is Karima and I live in Pennsylvania. I was diagnosed with > rectal cancer on May 27th. We are at the point where one doctor says > one thing and one says another. > > What do you do with that? > > Thank you, > Karima Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 Welcome Karima,to our group. I wish you did not need to be here,but it is a great place to vent,share and gather information. In regards to the differing info you're getting from your docs....either get them together or better yet take yourself to a major cancer center where you will have a team(oncologist,surgeon,others)to organize your care and plan the best treatment plan for you. Ask lots of questions and keep asking until you understand the answers you are given.If you go to the links bar on this group site there is a multitude of information including a list of major cancer centers if you don't have one now. Let us know how you are doing. Hugs & Prayers to All, H S/O 'Hubby,52,diagnosed 7/31/03 inoperable stage IV cc Third-line chemo of Avastin/CPT-11/5FU/LV for 3 mo, 5/20/04 CT scans show significant progression of disease,CEA:1060 6/2/04 started " Plan D " ,Folfox 4 > Hi, > > My name is Karima and I live in Pennsylvania. I was diagnosed with > rectal cancer on May 27th. We are at the point where one doctor says > one thing and one says another. > > What do you do with that? > > Thank you, > Karima Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Where are you in PA? Are the Dr.s part of the same group or hospital? What is your impression of them in terms of bedside manner/ These things may be important down the line especially having someone you can talk openly with and will FIGHT for you- Hope all goes well for you Narice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Dear " Mark's wife " , Thanks for your quick comeback. I understand the team approach and with the HMO's, my primary care guy who has been my doc for about 18 years is the one who recommended the oncologist, surgeon and chemotherapist. Originally he recommended this Dr. Moscowicz from town, NJ but because it was so far away and I was in such denial, I said I'm not going to M-town so he gave me the name of a group and I was able to get a good recommendation from friends for one of their surgeons who again recommended the guy in town. So that was that. The tumor is very low in the rectum and has not penetrated the wall; I just had the ultra sound this week. Based on these results, the surgeon wants to go ahead and remove it. Also the cat scan was clean. The chemo doctor is not apprised of the results of the ultra sound but she had said you have a better chance of survival if you have the chemo and radiation first; the oncologists says we have one chance and one chance only to kill the cancer and that is through radiation and chemo together. But he doesn't know the results of the ultra sound either. I have an appointment with my primary care physician and the surgeon next week; I've ordered the chemo (pill form) and need to get this info to the oncologist. I have a great support system in my friends. My daughters are pretty much self-centered and useless and my sister is on the west coast. I believe we can beat this cancer, the thing is to get a consensus amongst doctors. I live alone with my three dogs. Thank you for listening. Karima. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Dear " Mark's wife " , Thanks for your quick comeback. I understand the team approach and with the HMO's, my primary care guy who has been my doc for about 18 years is the one who recommended the oncologist, surgeon and chemotherapist. Originally he recommended this Dr. Moscowicz from town, NJ but because it was so far away and I was in such denial, I said I'm not going to M-town so he gave me the name of a group and I was able to get a good recommendation from friends for one of their surgeons who again recommended the guy in town. So that was that. The tumor is very low in the rectum and has not penetrated the wall; I just had the ultra sound this week. Based on these results, the surgeon wants to go ahead and remove it. Also the cat scan was clean. The chemo doctor is not apprised of the results of the ultra sound but she had said you have a better chance of survival if you have the chemo and radiation first; the oncologists says we have one chance and one chance only to kill the cancer and that is through radiation and chemo together. But he doesn't know the results of the ultra sound either. I have an appointment with my primary care physician and the surgeon next week; I've ordered the chemo (pill form) and need to get this info to the oncologist. I have a great support system in my friends. My daughters are pretty much self-centered and useless and my sister is on the west coast. I believe we can beat this cancer, the thing is to get a consensus amongst doctors. I live alone with my three dogs. Thank you for listening. Karima. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Hi Karima It's the hardest thing trying to get these doctors to talk to each other and gain a consensus! I would tend to agree with your surgeon to remove the tumor. The idea behind the radiation/chemo before the surgery is that it may shrink the tumor and kill stray cells around the tumor and in the lymph nodes so the tumor is smaller when the surgery takes place. Sometimes this works great and sometimes there isn't much change. In my husband's case, the ultrasound showed possible lymph node involvement and penetration of the bowel wall, so he had the radiation/chemo before the surgery. The tumor didn't shrink much at all and they still found 4 of 6 lymph nodes with cancer. It's great news that the cancer was caught so early! Take care! P Karima wrote: I believe we can beat this cancer, the thing is to get a consensus amongst doctors. Karima. P Caregiver to husband, Dale, who is 73 and undergoing chemotherapy for Stage IV rectal cancer diagnosed in 2002 __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Karima, I agree with about the radiation. My husband had a 2cm tumor in the rectum. He had 6 weeks of chemo 24hrs a day 7days a week via pump. He also had at the same time radiation to shrink the tumor. We were never given the option of a ultrasound to see if it had invaded the wall. They told us at the time the only way to tell was to remove the tumor. They removed 24 lymph nodes and all were negative. We wanted follow up chemo and they said he was cured. Wrong, it came back exactly one year later. His tumor did penetrate the wall but did not go all the way thru. The radiation did some really bad damage and did not shrink the tumor a lot. He developed a fistula that bonded the bladder to the wall of the colon and caused permanent damage. If he were given the chance again he said he would go for the surgery and not wasted any more time. He still has problems with his bladder control and constantly has to monitor for infections. He was actually passing gas thru the penis. At the time we thought we were doing the right thing because it was even written in the medical magazines that this was the way to go. Hindsite is 20 20 and we just have to deal with our mistakes and go on. I agree with others, I just wish we had found this message group and I think we would have made wiser desicions. If they are 100% sure that your has not penetrated the wall I would jump at the surgery option first. Best Wishes, Joyce > I believe we can beat this cancer, the thing is to get a consensus > amongst doctors. > > > Karima. > > > > P > Caregiver to husband, Dale, who is 73 and undergoing chemotherapy for Stage IV rectal cancer diagnosed in 2002 > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Karima, Based on my experience (I have rectal cancer), I think there are two stages to your decision making process; as I always say, I am not a doctor - as such, there may be some things that I am not aware of. First and foremost, the rectal cancer (the primary site) has to be removed. More than likely, they will not be able to succinctly stage your cancer until it is removed and they can do exploratory surgery around it, and the staging predicates any other types of treatment, such as chemo. Any decision here is relatively straightforward. The only question will be whether you do radiation beforehand or not. The decision on radiation depends on two things - where it is in the rectum and how aminable you are to a colostomy. The goal of any radiation is to shrink the tumor such that the surgeon can preserve the anus and sphincter muscles - if they can do that, the rectum can be sewn back together instead of having a colostomy. My doctor told me that " usually " cancer in the top third of the rectum is removed without presurgery radiation; in the middle third, either way (I chose not to have it - my surgeon told me that he could connect without radiation); in the lower third, they usually radiate to shrink the tumor size. Now then, surgery - you probably need to choose a surgeon, who, at a minimum, is board certified in colorectal surgery. A general surgeon probably won't have the experience to do a good job. There are places on the web to check certification - if you cannot find them through a search and want a link, I can probably help. Colorectal surgeons at major cancer centers (fox chase in philly, sloan kettering in ny, roswell park in buffalo) probably have more experience than any, but I found a great guy here where I live in Albany, NY, so I don't think you have to be at one of these places to get a good result, as long as the surgeon is experienced. Once the surgery (assuming you get it) is when more questions arise, and they depend on stage. At this stage, I would definitely go to a major cancer center for a second opinion. You can probably get good care locally, but I found the team approach at these places, regardless of where you get treated, will significantly enhance your understanding of your options. Hope this helps - good luck - Joe > Hi, > > My name is Karima and I live in Pennsylvania. I was diagnosed with > rectal cancer on May 27th. We are at the point where one doctor says > one thing and one says another. > > What do you do with that? > > Thank you, > Karima Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 _support] Re: diagnosed May 27th. I'm glad I found you ... Thank you so much . I will know more this week. Karima Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Thank you . How did it work out for your husband? This tumor is also low - 8 cm. The first surgeon who was my choice said it was too close for him to calll and he recommended me to the surgeon my own doctor originally recommended. I am going to see the second surgeon this week to talk about the operation. I have already told him if it has to be a colostomy, well then so be it. Life is the trade off and I want to live. We haven't spoken in person since the ultrasound but I will see him hopefully on Tuesday. The toughest part of all of this is I live alone with my dogs. I have great friends and daughters who don't know how to give of themselves. I am trying to deal with that. This tumor has not invaded the wall. Thanks so much for your response. Karima Links To visit your group on the web, go to: http://groups.yahoo.com/group/colon_cancer_support/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Thank you . How did it work out for your husband? This tumor is also low - 8 cm. The first surgeon who was my choice said it was too close for him to calll and he recommended me to the surgeon my own doctor originally recommended. I am going to see the second surgeon this week to talk about the operation. I have already told him if it has to be a colostomy, well then so be it. Life is the trade off and I want to live. We haven't spoken in person since the ultrasound but I will see him hopefully on Tuesday. The toughest part of all of this is I live alone with my dogs. I have great friends and daughters who don't know how to give of themselves. I am trying to deal with that. This tumor has not invaded the wall. Thanks so much for your response. Karima Links To visit your group on the web, go to: http://groups.yahoo.com/group/colon_cancer_support/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Thank you . How did it work out for your husband? This tumor is also low - 8 cm. The first surgeon who was my choice said it was too close for him to calll and he recommended me to the surgeon my own doctor originally recommended. I am going to see the second surgeon this week to talk about the operation. I have already told him if it has to be a colostomy, well then so be it. Life is the trade off and I want to live. We haven't spoken in person since the ultrasound but I will see him hopefully on Tuesday. The toughest part of all of this is I live alone with my dogs. I have great friends and daughters who don't know how to give of themselves. I am trying to deal with that. This tumor has not invaded the wall. Thanks so much for your response. Karima Links To visit your group on the web, go to: http://groups.yahoo.com/group/colon_cancer_support/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Dear Joyce I am so glad I read your note. May I ask how your husband is now? I am definitely leaning towards jumping at the surgery and am seeing the doctor this week on Tuesday. Will let everyone know. Thank you, Karima -- Re: diagnosed May 27th. I'm glad I found you .... Karima, I agree with about the radiation. My husband had a 2cm tumor in the rectum. He had 6 weeks of chemo 24hrs a day 7days a week via pump. He also had at the same time radiation to shrink the tumor. We were never given the option of a ultrasound to see if it had invaded the wall. They told us at the time the only way to tell was to remove the tumor. They removed 24 lymph nodes and all were negative. We wanted follow up chemo and they said he was cured. Wrong, it came back exactly one year later. His tumor did penetrate the wall but did not go all the way thru. The radiation did some really bad damage and did not shrink the tumor a lot. He developed a fistula that bonded the bladder to the wall of the colon and caused permanent damage. If he were given the chance again he said he would go for the surgery and not wasted any more time. He still has problems with his bladder control and constantly has to monitor for infections. He was actually passing gas thru the penis. At the time we thought we were doing the right thing because it was even written in the medical magazines that this was the way to go. Hindsite is 20 20 and we just have to deal with our mistakes and go on. I agree with others, I just wish we had found this message group and I think we would have made wiser desicions. If they are 100% sure that your has not penetrated the wall I would jump at the surgery option first. Best Wishes, Joyce > I believe we can beat this cancer, the thing is to get a consensus > amongst doctors. > > > Karima. > > > > P > Caregiver to husband, Dale, who is 73 and undergoing chemotherapy for Stage IV rectal cancer diagnosed in 2002 > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Dear Joyce I am so glad I read your note. May I ask how your husband is now? I am definitely leaning towards jumping at the surgery and am seeing the doctor this week on Tuesday. Will let everyone know. Thank you, Karima -- Re: diagnosed May 27th. I'm glad I found you .... Karima, I agree with about the radiation. My husband had a 2cm tumor in the rectum. He had 6 weeks of chemo 24hrs a day 7days a week via pump. He also had at the same time radiation to shrink the tumor. We were never given the option of a ultrasound to see if it had invaded the wall. They told us at the time the only way to tell was to remove the tumor. They removed 24 lymph nodes and all were negative. We wanted follow up chemo and they said he was cured. Wrong, it came back exactly one year later. His tumor did penetrate the wall but did not go all the way thru. The radiation did some really bad damage and did not shrink the tumor a lot. He developed a fistula that bonded the bladder to the wall of the colon and caused permanent damage. If he were given the chance again he said he would go for the surgery and not wasted any more time. He still has problems with his bladder control and constantly has to monitor for infections. He was actually passing gas thru the penis. At the time we thought we were doing the right thing because it was even written in the medical magazines that this was the way to go. Hindsite is 20 20 and we just have to deal with our mistakes and go on. I agree with others, I just wish we had found this message group and I think we would have made wiser desicions. If they are 100% sure that your has not penetrated the wall I would jump at the surgery option first. Best Wishes, Joyce > I believe we can beat this cancer, the thing is to get a consensus > amongst doctors. > > > Karima. > > > > P > Caregiver to husband, Dale, who is 73 and undergoing chemotherapy for Stage IV rectal cancer diagnosed in 2002 > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Dear Joyce I am so glad I read your note. May I ask how your husband is now? I am definitely leaning towards jumping at the surgery and am seeing the doctor this week on Tuesday. Will let everyone know. Thank you, Karima -- Re: diagnosed May 27th. I'm glad I found you .... Karima, I agree with about the radiation. My husband had a 2cm tumor in the rectum. He had 6 weeks of chemo 24hrs a day 7days a week via pump. He also had at the same time radiation to shrink the tumor. We were never given the option of a ultrasound to see if it had invaded the wall. They told us at the time the only way to tell was to remove the tumor. They removed 24 lymph nodes and all were negative. We wanted follow up chemo and they said he was cured. Wrong, it came back exactly one year later. His tumor did penetrate the wall but did not go all the way thru. The radiation did some really bad damage and did not shrink the tumor a lot. He developed a fistula that bonded the bladder to the wall of the colon and caused permanent damage. If he were given the chance again he said he would go for the surgery and not wasted any more time. He still has problems with his bladder control and constantly has to monitor for infections. He was actually passing gas thru the penis. At the time we thought we were doing the right thing because it was even written in the medical magazines that this was the way to go. Hindsite is 20 20 and we just have to deal with our mistakes and go on. I agree with others, I just wish we had found this message group and I think we would have made wiser desicions. If they are 100% sure that your has not penetrated the wall I would jump at the surgery option first. Best Wishes, Joyce > I believe we can beat this cancer, the thing is to get a consensus > amongst doctors. > > > Karima. > > > > P > Caregiver to husband, Dale, who is 73 and undergoing chemotherapy for Stage IV rectal cancer diagnosed in 2002 > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Hi Karima, Sorry that your family isn't more supportive. It's a good thing you have your dogs, they can be a great comfort to you, I know. My husband's tumor was 7 cm above the anal verge. The first surgeon who did the colonoscopy was a general/vascular surgeon in a small rural community. He said there was no other way but my husband would have to have a colostomy. I contacted a board certified colorectal surgeon and he said that they could use sphincter sparing procedures and my husband would not have to have a permanent colostomy. We went with the board certified surgeon, who is an excellent surgeon - he put in the chest port (for the chemo) before the rectal surgery. My husband had bad complications - he was 71 at the time of the surgery and had HBP and diabetes. He had a stroke two or three days before his surgery and had a lot of trouble recovering from both the stroke and the surgery - added with the chemo on top of that, he nearly didn't make it the first year (this was in 2002). He had the temporary ileostomy reversed in September 2002 and has had trouble ever since regaining bowel control. I don't know how much is due to diabetes, stroke, age, the surgery, radiation, etc. etc. - any of these could have an effect on his bowel control. The colorectal surgeon said that he had to pull a lot of colon down to make a new rectum and that the colon tissue has to " learn " to act like a rectum, so sometimes " leakage " (as he puts it) occurs. Also, the months he had the ileostomy, he had to " retrain " his sphincter to have a little better " grip " . Since the stroke, my husband has very low motivation to do anything for himself. There are sphincter exercises and a regimen of taking psyllium to help retrain the bowels, but he refused to take the psyllium. He says he does the exercises, but he has refused to do other physical therapy stuff, so I don't know if he does it or not. He still has trouble controlling his bowels, which is really bad when he was on chemo that causes diarrhea. The bowel control issue is something you might want to discuss with your surgeon. It may be because my husband had so many other complications, that he is having an unusually bad time of it. Other than that, the surgery was very successful - he had no infection or adhesions, everything went very well. I do wish that the colorectal surgeon had discussed the possibility that his bowel control could be affected, but then the surgeon had no idea that he would have a stroke or anything like that before the surgery. Take care P Barbara Gari wrote: Thank you . How did it work out for your husband? This tumor is also low - 8 cm. The first surgeon who was my choice said it was too close for him to calll and he recommended me to the surgeon my own doctor originally recommended. I am going to see the second surgeon this week to talk about the operation. I have already told him if it has to be a colostomy, well then so be it. Life is the trade off and I want to live. We haven't spoken in person since the ultrasound but I will see him hopefully on Tuesday. The toughest part of all of this is I live alone with my dogs. I have great friends and daughters who don't know how to give of themselves. I am trying to deal with that. This tumor has not invaded the wall. Thanks so much for your response. Karima Links To visit your group on the web, go to: http://groups.yahoo.com/group/colon_cancer_support/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Hi Karima, Sorry that your family isn't more supportive. It's a good thing you have your dogs, they can be a great comfort to you, I know. My husband's tumor was 7 cm above the anal verge. The first surgeon who did the colonoscopy was a general/vascular surgeon in a small rural community. He said there was no other way but my husband would have to have a colostomy. I contacted a board certified colorectal surgeon and he said that they could use sphincter sparing procedures and my husband would not have to have a permanent colostomy. We went with the board certified surgeon, who is an excellent surgeon - he put in the chest port (for the chemo) before the rectal surgery. My husband had bad complications - he was 71 at the time of the surgery and had HBP and diabetes. He had a stroke two or three days before his surgery and had a lot of trouble recovering from both the stroke and the surgery - added with the chemo on top of that, he nearly didn't make it the first year (this was in 2002). He had the temporary ileostomy reversed in September 2002 and has had trouble ever since regaining bowel control. I don't know how much is due to diabetes, stroke, age, the surgery, radiation, etc. etc. - any of these could have an effect on his bowel control. The colorectal surgeon said that he had to pull a lot of colon down to make a new rectum and that the colon tissue has to " learn " to act like a rectum, so sometimes " leakage " (as he puts it) occurs. Also, the months he had the ileostomy, he had to " retrain " his sphincter to have a little better " grip " . Since the stroke, my husband has very low motivation to do anything for himself. There are sphincter exercises and a regimen of taking psyllium to help retrain the bowels, but he refused to take the psyllium. He says he does the exercises, but he has refused to do other physical therapy stuff, so I don't know if he does it or not. He still has trouble controlling his bowels, which is really bad when he was on chemo that causes diarrhea. The bowel control issue is something you might want to discuss with your surgeon. It may be because my husband had so many other complications, that he is having an unusually bad time of it. Other than that, the surgery was very successful - he had no infection or adhesions, everything went very well. I do wish that the colorectal surgeon had discussed the possibility that his bowel control could be affected, but then the surgeon had no idea that he would have a stroke or anything like that before the surgery. Take care P Barbara Gari wrote: Thank you . How did it work out for your husband? This tumor is also low - 8 cm. The first surgeon who was my choice said it was too close for him to calll and he recommended me to the surgeon my own doctor originally recommended. I am going to see the second surgeon this week to talk about the operation. I have already told him if it has to be a colostomy, well then so be it. Life is the trade off and I want to live. We haven't spoken in person since the ultrasound but I will see him hopefully on Tuesday. The toughest part of all of this is I live alone with my dogs. I have great friends and daughters who don't know how to give of themselves. I am trying to deal with that. This tumor has not invaded the wall. Thanks so much for your response. Karima Links To visit your group on the web, go to: http://groups.yahoo.com/group/colon_cancer_support/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 There are several places in Scranton as well as the Northeast Regional Cancer Institute over the line in NJ should you need more experienced Drs or major centers. As you are somewhat isolated from medical care if you like these Dr.s I would stay with them. Ask what contact they have with the more major centers. Surgery would depend on the stage of the cancer and the spread factor. As for chemo you should be hearing about 5FU or Camptosar with whatever other drugs they suggest the more common ones being oxilaplatin, and brand new drugs Erbitux and Avastin. They will tell you risks vs. benefits and probably give you a handout from the drug companies. ASK lots of questions of the Drs and of u. God Bless Narice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 There are several places in Scranton as well as the Northeast Regional Cancer Institute over the line in NJ should you need more experienced Drs or major centers. As you are somewhat isolated from medical care if you like these Dr.s I would stay with them. Ask what contact they have with the more major centers. Surgery would depend on the stage of the cancer and the spread factor. As for chemo you should be hearing about 5FU or Camptosar with whatever other drugs they suggest the more common ones being oxilaplatin, and brand new drugs Erbitux and Avastin. They will tell you risks vs. benefits and probably give you a handout from the drug companies. ASK lots of questions of the Drs and of u. God Bless Narice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 Karima, At the present time he is undergoing IMRT and taking Xeloda. He also gets the Avastin drip every two weeks. He has another met to the right lung and also one in the left lung. He has handled the Xeloda well before, but having the radiation and the chemo at the same time is really kicking his butt. He has started his passing out again today and I am worried he may have his blood clot back in his leg. It's very important to not lay around a lot, which he has been doing, to avoid DVT to the legs. has Asbestosis to the lungs due to his many years of being around asbestos. This alone is a dreadful disease and to be complicated with lung tumors makes it really hard to fight. This all started 4 years ago this month. He is a fighter and always seems to rebound one way or another. It's just a really tough fight. Best Wishes, Joyce-- In colon_cancer_support , " Barbara Gari " <Karima@w...> wrote: > Dear Joyce > > I am so glad I read your note. May I ask how your husband is now? > I am definitely leaning towards jumping at the surgery and am seeing the > doctor this week on Tuesday. > > Will let everyone know. > > Thank you, > Karima > > -- Re: diagnosed May 27th. I'm glad I found you > ... > > Karima, > I agree with about the radiation. My husband had a 2cm tumor > in the rectum. He had 6 weeks of chemo 24hrs a day 7days a week via > pump. He also had at the same time radiation to shrink the tumor. > We were never given the option of a ultrasound to see if it had > invaded the wall. They told us at the time the only way to tell was > to remove the tumor. > They removed 24 lymph nodes and all were negative. We wanted follow > up chemo and they said he was cured. Wrong, it came back exactly one > year later. His tumor did penetrate the wall but did not go all the > way thru. The radiation did some really bad damage and did not > shrink the tumor a lot. He developed a fistula that bonded the > bladder to the wall of the colon and caused permanent damage. If he > were given the chance again he said he would go for the surgery and > not wasted any more time. He still has problems with his bladder > control and constantly has to monitor for infections. He was > actually passing gas thru the penis. At the time we thought we were > doing the right thing because it was even written in the medical > magazines that this was the way to go. Hindsite is 20 20 and we > just have to deal with our mistakes and go on. > I agree with others, I just wish we had found this message group and > I think we would have made wiser desicions. If they are 100% sure > that your has not penetrated the wall I would jump at the surgery > option first. > Best Wishes, > Joyce > > I believe we can beat this cancer, the thing is to get a consensus > > amongst doctors. > > > > > > Karima. > > > > > > > > P > > Caregiver to husband, Dale, who is 73 and undergoing chemotherapy > for Stage IV rectal cancer diagnosed in 2002 > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 Karima, At the present time he is undergoing IMRT and taking Xeloda. He also gets the Avastin drip every two weeks. He has another met to the right lung and also one in the left lung. He has handled the Xeloda well before, but having the radiation and the chemo at the same time is really kicking his butt. He has started his passing out again today and I am worried he may have his blood clot back in his leg. It's very important to not lay around a lot, which he has been doing, to avoid DVT to the legs. has Asbestosis to the lungs due to his many years of being around asbestos. This alone is a dreadful disease and to be complicated with lung tumors makes it really hard to fight. This all started 4 years ago this month. He is a fighter and always seems to rebound one way or another. It's just a really tough fight. Best Wishes, Joyce-- In colon_cancer_support , " Barbara Gari " <Karima@w...> wrote: > Dear Joyce > > I am so glad I read your note. May I ask how your husband is now? > I am definitely leaning towards jumping at the surgery and am seeing the > doctor this week on Tuesday. > > Will let everyone know. > > Thank you, > Karima > > -- Re: diagnosed May 27th. I'm glad I found you > ... > > Karima, > I agree with about the radiation. My husband had a 2cm tumor > in the rectum. He had 6 weeks of chemo 24hrs a day 7days a week via > pump. He also had at the same time radiation to shrink the tumor. > We were never given the option of a ultrasound to see if it had > invaded the wall. They told us at the time the only way to tell was > to remove the tumor. > They removed 24 lymph nodes and all were negative. We wanted follow > up chemo and they said he was cured. Wrong, it came back exactly one > year later. His tumor did penetrate the wall but did not go all the > way thru. The radiation did some really bad damage and did not > shrink the tumor a lot. He developed a fistula that bonded the > bladder to the wall of the colon and caused permanent damage. If he > were given the chance again he said he would go for the surgery and > not wasted any more time. He still has problems with his bladder > control and constantly has to monitor for infections. He was > actually passing gas thru the penis. At the time we thought we were > doing the right thing because it was even written in the medical > magazines that this was the way to go. Hindsite is 20 20 and we > just have to deal with our mistakes and go on. > I agree with others, I just wish we had found this message group and > I think we would have made wiser desicions. If they are 100% sure > that your has not penetrated the wall I would jump at the surgery > option first. > Best Wishes, > Joyce > > I believe we can beat this cancer, the thing is to get a consensus > > amongst doctors. > > > > > > Karima. > > > > > > > > P > > Caregiver to husband, Dale, who is 73 and undergoing chemotherapy > for Stage IV rectal cancer diagnosed in 2002 > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 Karima, At the present time he is undergoing IMRT and taking Xeloda. He also gets the Avastin drip every two weeks. He has another met to the right lung and also one in the left lung. He has handled the Xeloda well before, but having the radiation and the chemo at the same time is really kicking his butt. He has started his passing out again today and I am worried he may have his blood clot back in his leg. It's very important to not lay around a lot, which he has been doing, to avoid DVT to the legs. has Asbestosis to the lungs due to his many years of being around asbestos. This alone is a dreadful disease and to be complicated with lung tumors makes it really hard to fight. This all started 4 years ago this month. He is a fighter and always seems to rebound one way or another. It's just a really tough fight. Best Wishes, Joyce-- In colon_cancer_support , " Barbara Gari " <Karima@w...> wrote: > Dear Joyce > > I am so glad I read your note. May I ask how your husband is now? > I am definitely leaning towards jumping at the surgery and am seeing the > doctor this week on Tuesday. > > Will let everyone know. > > Thank you, > Karima > > -- Re: diagnosed May 27th. I'm glad I found you > ... > > Karima, > I agree with about the radiation. My husband had a 2cm tumor > in the rectum. He had 6 weeks of chemo 24hrs a day 7days a week via > pump. He also had at the same time radiation to shrink the tumor. > We were never given the option of a ultrasound to see if it had > invaded the wall. They told us at the time the only way to tell was > to remove the tumor. > They removed 24 lymph nodes and all were negative. We wanted follow > up chemo and they said he was cured. Wrong, it came back exactly one > year later. His tumor did penetrate the wall but did not go all the > way thru. The radiation did some really bad damage and did not > shrink the tumor a lot. He developed a fistula that bonded the > bladder to the wall of the colon and caused permanent damage. If he > were given the chance again he said he would go for the surgery and > not wasted any more time. He still has problems with his bladder > control and constantly has to monitor for infections. He was > actually passing gas thru the penis. At the time we thought we were > doing the right thing because it was even written in the medical > magazines that this was the way to go. Hindsite is 20 20 and we > just have to deal with our mistakes and go on. > I agree with others, I just wish we had found this message group and > I think we would have made wiser desicions. If they are 100% sure > that your has not penetrated the wall I would jump at the surgery > option first. > Best Wishes, > Joyce > > I believe we can beat this cancer, the thing is to get a consensus > > amongst doctors. > > > > > > Karima. > > > > > > > > P > > Caregiver to husband, Dale, who is 73 and undergoing chemotherapy > for Stage IV rectal cancer diagnosed in 2002 > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 Hi Karima I think you're making a smart choice to go ahead with the surgery. Your surgeon has probably seen a number of cases where the radiation didn't make much difference in the size of the tumor. The oncologist will get over it. I think it's important to have chemo after the surgery though - even if the margins and the lymph nodes are clear, the chemo can clean up any stray cells that can't be detected with the methods available today. Take care! P Barbara Gari wrote: Hi Joyce Xeloda is the chemo the doc gave me a prescription for. I went to see the surgeon again today and have decided to go ahead with the surgery. We have set a date for July 27th which is 4 weeks; he wants me to have a cardiac workup just to make sure I won't have a problem during the operation. He doesn't know me so...I guess this is an okay thing. Tomorrow both the oncologist and chemotherapist have asked me to come in .. I think they want to plead their case; I am also seeing my regular physician so as to get the plan firmed up in my head. Afterall, he recommended all of them. I am so sorry for what your husband is going through. I guess we can second guess ourselves forever. In any event the plan is set. And I will definitely be corresponding on the list. Thanks again, Karima -- Re: diagnosed May 27th. I'm glad I found you > ... > > Karima, > I agree with about the radiation. My husband had a 2cm tumor > in the rectum. He had 6 weeks of chemo 24hrs a day 7days a week via > pump. He also had at the same time radiation to shrink the tumor. > We were never given the option of a ultrasound to see if it had > invaded the wall. They told us at the time the only way to tell was > to remove the tumor. > They removed 24 lymph nodes and all were negative. We wanted follow > up chemo and they said he was cured. Wrong, it came back exactly one > year later. His tumor did penetrate the wall but did not go all the > way thru. The radiation did some really bad damage and did not > shrink the tumor a lot. He developed a fistula that bonded the > bladder to the wall of the colon and caused permanent damage. If he > were given the chance again he said he would go for the surgery and > not wasted any more time. He still has problems with his bladder > control and constantly has to monitor for infections. He was > actually passing gas thru the penis. At the time we thought we were > doing the right thing because it was even written in the medical > magazines that this was the way to go. Hindsite is 20 20 and we > just have to deal with our mistakes and go on. > I agree with others, I just wish we had found this message group and > I think we would have made wiser desicions. If they are 100% sure > that your has not penetrated the wall I would jump at the surgery > option first. > Best Wishes, > Joyce > > I believe we can beat this cancer, the thing is to get a consensus > > amongst doctors. > > > > > > Karima. > > > > > > > > P > > Caregiver to husband, Dale, who is 73 and undergoing chemotherapy > for Stage IV rectal cancer diagnosed in 2002 > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 Hi Karima I think you're making a smart choice to go ahead with the surgery. Your surgeon has probably seen a number of cases where the radiation didn't make much difference in the size of the tumor. The oncologist will get over it. I think it's important to have chemo after the surgery though - even if the margins and the lymph nodes are clear, the chemo can clean up any stray cells that can't be detected with the methods available today. Take care! P Barbara Gari wrote: Hi Joyce Xeloda is the chemo the doc gave me a prescription for. I went to see the surgeon again today and have decided to go ahead with the surgery. We have set a date for July 27th which is 4 weeks; he wants me to have a cardiac workup just to make sure I won't have a problem during the operation. He doesn't know me so...I guess this is an okay thing. Tomorrow both the oncologist and chemotherapist have asked me to come in .. I think they want to plead their case; I am also seeing my regular physician so as to get the plan firmed up in my head. Afterall, he recommended all of them. I am so sorry for what your husband is going through. I guess we can second guess ourselves forever. In any event the plan is set. And I will definitely be corresponding on the list. Thanks again, Karima -- Re: diagnosed May 27th. I'm glad I found you > ... > > Karima, > I agree with about the radiation. My husband had a 2cm tumor > in the rectum. He had 6 weeks of chemo 24hrs a day 7days a week via > pump. He also had at the same time radiation to shrink the tumor. > We were never given the option of a ultrasound to see if it had > invaded the wall. They told us at the time the only way to tell was > to remove the tumor. > They removed 24 lymph nodes and all were negative. We wanted follow > up chemo and they said he was cured. Wrong, it came back exactly one > year later. His tumor did penetrate the wall but did not go all the > way thru. The radiation did some really bad damage and did not > shrink the tumor a lot. He developed a fistula that bonded the > bladder to the wall of the colon and caused permanent damage. If he > were given the chance again he said he would go for the surgery and > not wasted any more time. He still has problems with his bladder > control and constantly has to monitor for infections. He was > actually passing gas thru the penis. At the time we thought we were > doing the right thing because it was even written in the medical > magazines that this was the way to go. Hindsite is 20 20 and we > just have to deal with our mistakes and go on. > I agree with others, I just wish we had found this message group and > I think we would have made wiser desicions. If they are 100% sure > that your has not penetrated the wall I would jump at the surgery > option first. > Best Wishes, > Joyce > > I believe we can beat this cancer, the thing is to get a consensus > > amongst doctors. > > > > > > Karima. > > > > > > > > P > > Caregiver to husband, Dale, who is 73 and undergoing chemotherapy > for Stage IV rectal cancer diagnosed in 2002 > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.