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Medical Forum / Diseases and Disorders / Cancer / January 2008colon cancer
Hi guys, it's been awhile since I posted or visited here. Tough to wade through all the spam. I have a dear friend who has recently been diagnosed with colon cancer. She met with her doc today to get the plan of action. Tumor has not broken through wall of colon or spread to the lymph nodes. It is in the wall of the colon though. She will receive chemo and rad for 4.5 weeks to shrink it before surgery. Chemo (5FU and possibly others, she couldn't remember) will be daily 5 days/week through a constant infusion through portacath. Radiation daily as well during that time. Surgery will follow after a brief resting phase. Then another course of chemo but it will be twice a week. I have a few questions. 1. They told her there were no mets. Her tumor is classified as a T3 M0 N0. They said it could be stage 2 or 3. If there were no mets and no nodes involved, how could it be stage 3? I know I shouldn't be concerned with stage but I just wonder if there is a difference in her survival rates. 2. Any guesses/guidelines on survival rates based on the above? Is it normal to give both chemo and rad together? I wonder if it will make her feel worse to get both together like that. 3. They mentioned colostomy. This has the family pretty freaked. Any good resources to describe the likelihood of this happening, and whether it is likely to be temporary or permanent? I assume they won't know until they see how the tumor responds to chemo/rad. If colostomy is permanent, are there ways to locate the outside apparatus so that it's the least obvious? I'm sure this is what she is most scared about, that people would see it through her clothes. Any guidance would be much appreciated. Thanks. Belle > Hi guys, it's been awhile since I posted or visited here. Tough to wade > through all the spam. [quoted text clipped - 27 lines] > > Any guidance would be much appreciated. Thanks. Belle Hello Belle, I'm sorry to hear about your friend. You can get statistics here http://patient.cancerconsultants.com/CancerTreatment_Colon_Cancer.aspx?LinkId=53892 by clicking on each stage. Stage II explains that "Despite undergoing complete surgical removal of the cancer, 25-40% of patients with stage II colon carcinoma experience recurrence of their cancer. Typically, cancer recurs because there are small amounts of cancer that had spread outside the colon and were not removed by surgery. These cancer cells cannot be detected with any of the currently available tests. Undetectable areas of cancer outside the colon are referred to as micrometastases. The presence of micrometastases causes the relapses that follow surgical treatment. An effective treatment is needed to cleanse the body of micrometastases in order to improve the cure rate achieved with surgical removal of the cancer." I think that's part of why they're now doing neoadjuvant chemotherapy. As far as I know, the final staging doesn't happen until after the surgery; on the pathology report. I've seen cancerous polyps, fingerlike projections and I've seen them after they've grown a lot and flattened and spread out along the bowel wall - thick and the size of a hand and I've seen some that are more what I would have thought tumor (roundish). So anyway, the surgeon determines, whether it's possible to reconnect the parts after removing the tumor (or tumors) leaving a wide enough margin (so no unseen microscopics are left behind). The keys to discretion for the ostomy is a pocket inside the underwear and higher waistline. You can find some by typing ostomy and underwear into a search engine. There are examples. A list of websites http://www.ostomates.org/links/access.html http://www.whiterosecollection.com/ Click on "ladies" and they' ll show a diagram and other underwear or sportswear examples. Miniskirt combined with underwear http://www.ostomycares.com/OstomySkirt.html Great for the beach ! More expensive - very pretty http://www.intimatemomentsapparel.com/women.html As far as I know, the final staging doesn't happen until after the surgery; on the pathology report. NCCN guidelines are here Patient: http://www.nccn.org/patients/patient_gls/_english/_colon/contents.asp Clinicians http://www.nccn.org/professionals/default.asp Is in a different format - show different (chemo) choices for various situations. On the right side, there's a notice : NCCN Clinical Practice Guidelines in Oncology Symposium Colon, Rectal, & Anal Cancers and 2008 Gastrointestinal Cancers Symposium Review Friday, February 15, 2008 (Chicago, Illinois) (so the guidelines might be updated soon) I thought they don't do radiation for colon cancer; but do for rectal, but there's tumors that can occur, for example: low anteroir, so maybe if he's lurking Steph will comment, or the reverse; if you find out where the tumor's located, and size, and post it, he'll tell you how it's handled in BC. Yes, RT to the rectum or lower colon does seem a tough go, for many, from the posts here and blogs I've read. Hopefully your friend has someone to go with her and ask questions of why they're doing things one way vs another and asks other questions as to what to expect? Sorry for the length of this. Have a look through the materials provided. If you have other questions, concerns, let us know, ok? Best of luck to your friend. Keep in touch. J >> Hi guys, it's been awhile since I posted or visited here. Tough to wade >> through all the spam. [quoted text clipped - 36 lines] > Best of luck to your friend. Keep in touch. > J Dear J Thank you SO very much for all of the links you provided, and the time you took to answer my questions. I am quickly learning about this. The tumor was described as marbel sized and low, so that may be why the radiation, as you mentioned. Thank you for the info about staging also and micrometastases. There is so much to learn about this. She (her name is Joanne) does have a husband and family in the area. Her husband has been going with her to her appointments, but I don't know if they're asking a lot of questions right now because I think they are still in shock. I don't think they are letting their adult children go to appointments or telling them everything, which is a source of frustration. There's nothing I can do or say about that. Every family is different in how they handle things like this. Our family was very open and shared all of the information from the doctors about Dad's condition, good and bad. I didn't have to guess whether I was getting the whole story or if people were being honest with my dad; I knew it or I was there to hear it myself. Mostly what I'm trying to do is provide support for the adult children since I've been there myself quite recently. It's tough to know what people want to know or hear. I hadn't realized how much I've learned from my dad's cancer battle. Thanks again, for all you do. And I'll keep you posted. Hugs, Belle > >> I have a dear friend who has recently been diagnosed with colon cancer. > >> She met with her doc today to get the plan of action. Tumor has [quoted text clipped - 43 lines] > Thanks again, for all you do. And I'll keep you posted. > Hugs, Belle You're welcome Belle, and thanks for the hugs. What I've just done is overwhelm you with general information, whereas your main goal (and her family) is to know what will happen with Joanne. I think I'd tell the adult children that it takes time, before the initial information comes in and unless a tumor is caught very early, due to screening or an accidental find, that there's almost always a lot of uncertainty as to what will happen; for at least the first few years. Stay positive, take notes (as bits of info filter down to the family), stay in touch but keep it short, help where possible, inject some humor. An example would be leaving this song on their parent's message machine http://f2.org/humour/songs/crs.html Click on the song, if it plays, turn it off (ie stop button). Then click on it again, there should be a Save possibility and save it to your computer, in a folder where you store songs and/or photos - not in email. They could play it out, from their speakers through the phone line to their parents. Helping: Mail/drop off contact (phone at home, work and cell) - Call me if you need anything - lawn mowing, laundry, ironing, pickup medicines, pickup dry-cleaning, vacuuming, backrub. Leave message on their phone: I've made a XXX casserole. And frozen it in small portions. Let me know when I can drop it by or which neighbor I can leave it with. Kids made some ginger cookies. Let me know (as above).. If they have kids (Sharon's grandkids), each one could call from time to time with short messages such as: Hi grandma and grandad. This is XXXX. I called to say I love you this big. (giggle) Bye now. or Hi grandma and grandad. This is XXX. I called to tell you I made you a valentines card. I'll mail it. ok? Bye, Bye. or Hi Grandma, It's XXX calling. Maybe we could have a picnic when school's out this summer at XXXX (park or location) I'll bring the blanket - you bring the food. OK? Bye for now (etc etc) Might be nice for them to have these messages to listen to, when they're wanting a break from cancer treatments or missing their old routine. As long as the kids don't overdo it daily and don't mention the cancer. How/s that for some staying in touch strategies? Hugs J >>>> I have a dear friend who has recently been diagnosed with colon cancer. >>>> She met with her doc today to get the plan of action. Tumor has [quoted text clipped - 84 lines] > Hugs > J That song is a hoot!!! Calls from the grandchildren are a great idea. They are mostly very young but I know one is old enough to call her on the phone and I'm sure she would love that. I'd already thought about taking food over but great idea about putting into small portions; I hadn't thought of that but it makes so much more sense. Joanne's cancer was found during a routine colonoscopy. So in a way that's good I think. It could have been found when it presented as symptoms and probably would be a much worse prognosis. Thanks again so much for all the great suggestions. Belle > >>>> I have a dear friend who has recently been diagnosed with colon cancer. > >>>> She met with her doc today to get the plan of action. Tumor has [quoted text clipped - 78 lines] > > Thanks again so much for all the great suggestions. Belle Hello Belle, It's very encouraging to hear that Joanne's was found on a routine colonoscopy. Looks like we're on the same page on the other issues; a way for you and adult children to stay involved and let her know she's cared about (ie not abandoned, as some people have complained about), without being imposed on, or plied with questions she may not want to answer (or have the answers at this time) or more privacy as she deals with the side effects of the RT. If you think of other ideas, please let us know - might help others reading, who have similar situations. She may even be keeping people out of the loop because she wants them to be able to continue on with their lives, without worrying too much about her. It's all conjecture. If you're not sure she'd appreciale that song, you could run it by the adult children. Perhaps they'd appreciate a little levity at this time. Yes, it is a hoot.. I think I found a better link for staging. It subdivides each stage - American Cancer Society. You may wish to save. I'll post it next post. I've managed to lock up my Mozilla and have to power down first. It must be such a reassurance for the adult children having you as a contact, as you know the ropes and I'm sure have broad shoulders to lean on (figuratively speaking) and a lot of common sense. I'll post later tonight or morning. I also want to explore pre-operative (neoadjuvant) chemo for colon and rectal cancer at the NCCN Guidelines to see what is said there, so it'll take me a bit of time. Hugs J > > >>>> I have a dear friend who has recently been diagnosed with colon cancer. > > >>>> She met with her doc today to get the plan of action. Tumor has [quoted text clipped - 9 lines] > You may wish to save. I'll post it next post. I've managed to lock up my Mozilla and have to > power down first. < http://www.cancer.org/docroot/CRI/content/CRI_2_8_After_Diagnosis_Staging_Colon_ and_Rectum_Cancer.asp After Diagnosis: Staging Colon and Rectum Cancer > I also want to explore pre-operative (neoadjuvant) chemo > for colon and rectal cancer at the NCCN Guidelines to see what is said there, so it'll take me > a bit of time. Hi Belle, No mention of neoadjuvant chemotherapy in the NCCN Guidelines (V.1.2008) for early stage colon cancer See Page, I think, 6 and 7 and 8 http://www.nccn.org/professionals/physician_gls/PDF/colon.pdf J > Hi guys, it's been awhile since I posted or visited here. Tough to wade > through all the spam. [quoted text clipped - 27 lines] > > Any guidance would be much appreciated. Thanks. Belle About the only guidance I can give is from personal experience---not very useful in a general sense, but I hope of some value. I'm sorry to hear of your friend's cancer, but happy to hear "no mets". Before my surgery, my surgeon thought the cancer was through the colon wall. After surgery and examination of the material removed, it was determined that it wasn't through the wall, but 4 of 15 removed lymph nodes were "involved", so I was classed as stage 3---no mets, but stray cells in the local nodes. Maybe this is why your friend may be stage 3, that they won't really know until examination of the local nodes removed during surgery whether it's in the lymphatic system. At 18 months from diagnosis, still no mets (another scan coming this month). Here's to hoping your friend stays free of mets or recurrence as well. At the time of my diagnosis, a colostomy was the least of my worries, but FWIW I didn't get one. With the system nice and clean before surgery, and plenty of good material to reconnect, they just reconnected the cut ends. My grandfather lived with a colostomy for years, and while he was somewhat embarrassed about it, it wasn't at all obvious. I hope your friend avoids this entirely, but if not, the nurses should be able to help minimize the inconvenience. Please don't let the recent flood of junk messages dissuade your from reading and posting here. We'll be interested to hear of your friend's progress, and support you and her through this. --- CSM >> Hi guys, it's been awhile since I posted or visited here. Tough to wade >> through all the spam. [quoted text clipped - 53 lines] > --- > CSM Dear CSM- Thank you for sharing your personal experience; it was indeed helpful to me. And it's interesting that one person's greatest fear (ostomy) is another's least of worries. I hope you get good news on your scan this month. Take care, Hugs, Belle > csm7...@hotmail.com wrote: > >> Hi guys, it's been awhile since I posted or visited here. Tough to wade [quoted text clipped - 61 lines] > month. Take care, > Hugs, Belle You're welcome. I'm glad to have been of help. Good luck, and thanks for the good wishes. Once I get the scan results (Feb), I'll post the results. --- CSM > > another's least of worries. I hope you get good news on your scan this > > month. Take care, [quoted text clipped - 3 lines] > for the good wishes. Once I get the scan results (Feb), I'll post the > results. Good wishes from me too, CSM J >Hi guys, it's been awhile since I posted or visited here. Tough to wade >through all the spam. FWIW, I don't bother munging my address; Usenet no longer seems to be a source for harvesting e-mail addresses. >3. They mentioned colostomy. This has the family pretty freaked. http://en.wikipedia.org/wiki/Colostomy is just a sketch on the topic, but is a start. Feedback on http://en.wikipedia.org/wiki/Talk:Colostomy would be appreciated. Una >> Hi guys, it's been awhile since I posted or visited here. Tough to wade >> through all the spam. [quoted text clipped - 9 lines] > > Una Una I will check that link out also. Thanks much. Belle > >Hi guys, it's been awhile since I posted or visited here. Tough to wade > >through all the spam. > > FWIW, I don't bother munging my address; Usenet no longer seems to be > a source for harvesting e-mail addresses. Archived posts are probably all munged, but can be picked up by the originals. I think she's talking about the garbage posts, which started mid-December. http://groups.google.com/group/alt.support.cancer/topics (which perhaps you don't see) J >>> Hi guys, it's been awhile since I posted or visited here. Tough to wade >>> through all the spam. [quoted text clipped - 7 lines] > (which perhaps you don't see) > J J, You are correct. I was shocked at all the garbage posts in here when I first opened the newsgroup in my thunderbird program. I thought y'all were gone for good! Glad that's not the case. Belle I am talking about Belle's "e-mail": nospam at leavemealone dot com Una > I am talking about Belle's "e-mail": nospam at leavemealone dot com > > Una That's right, I don't freely advertise my email address. > > I am talking about Belle's "e-mail": nospam at leavemealone dot com > > > > Una > > That's right, I don't freely advertise my email address. Hi Belle, It's best to put an X at the end of leavemealone because there's a domain by that name. So @leavemealoneX.com would be better. J >>> I am talking about Belle's "e-mail": nospam at leavemealone dot com >>> [quoted text clipped - 7 lines] > So @leavemealoneX.com would be better. > J done! thanx > Hi guys, it's been awhile since I posted or visited here. Tough to wade > through all the spam. [quoted text clipped - 17 lines] > 2. Any guesses/guidelines on survival rates based on the above? > Is it normal to give both chemo and rad together? In the US, yes. > I wonder if it will make her feel worse to get both together like that. The toxicity is certainly higher than rads alone. > 3. They mentioned colostomy. This has the family pretty freaked. Any > good resources to describe the likelihood of this happening, and whether [quoted text clipped - 3 lines] > least obvious? I'm sure this is what she is most scared about, that > people would see it through her clothes. Colostomy may be temporary or permanent. Temporary is not really a big long term issue. Permanent stoma is usually needed if the cancer is less than about 5-6cm from the anorectal junction. > Any guidance would be much appreciated. Thanks. Belle >> Hi guys, it's been awhile since I posted or visited here. Tough to wade >> through all the spam. [quoted text clipped - 38 lines] > >> Any guidance would be much appreciated. Thanks. Belle Thank you Steph. Is there a reason why they would give both together rather than one after the other? I know time is of the essence but I wonder if it's going to be too much for her to handle. I guess they wouldn't do it if they didn't think she could take it, but I'm very worried about how she's going to feel. Belle >>> Hi guys, it's been awhile since I posted or visited here. Tough to wade >>> through all the spam. [quoted text clipped - 44 lines] > wouldn't do it if they didn't think she could take it, but I'm very > worried about how she's going to feel. Belle Because they think the most treatment is the same as the best treatment. > >>> Hi guys, it's been awhile since I posted or visited here. Tough to wade > >>> through all the spam. [quoted text clipped - 46 lines] > > Because they think the most treatment is the same as the best treatment. It's sometimes done with rectal cancer ? http://www.bccancer.bc.ca/HPI/CancerManagementGuidelines/Gastrointestinal/06.Rec tum/Management/default.htm >> >>> Hi guys, it's been awhile since I posted or visited here. Tough to >> >>> wade [quoted text clipped - 66 lines] > It's sometimes done with rectal cancer ? > http://www.bccancer.bc.ca/HPI/CancerManagementGuidelines/Gastrointestinal/06.Rec tum/Management/default.htm Only for fixed, inoperable cancers > >> >>> Hi guys, it's been awhile since I posted or visited here. Tough to > >> >>> wade [quoted text clipped - 68 lines] > > Only for fixed, inoperable cancers Then surgery. "Unresectable rectal cancer patients may also be referred for consideration of "down-staging" with preoperative radical radiotherapy or chemoradiotherapy. Could you please explain "fixed" and "non-fixed"? J > >> Hi guys, it's been awhile since I posted or visited here. Tough to wade > >> through all the spam. [quoted text clipped - 44 lines] > wouldn't do it if they didn't think she could take it, but I'm very > worried about how she's going to feel. Belle Hi Belle, I checked Sloan Kettering and it's only done with rectal cancer. http://www.mskcc.org/mskcc/html/5789.cfm Can you name her hospital? I 'd go see what their webpage says. It's a worry. It's a tough go. Some of the "head and neckers" here had it, but they weren't also having surgery. I also followed along with some who had it done for vaginal cancer (exceptional situation where surgery was not possible), uterine cancer (preservation of the uterus - no surgery). Dale was here, May, 2007, (newly diagnosed with colon cancer) and he had chemo/rads and was in a lot of pain. You can read up on all the things that happened to his body, while on this treatment in his blog http://dalezjc.wordpress.com/category/uncategorized/page/4/ He was having exchanges with others here. All of them had chemo, after the surgery. CSM had laproscopic surgery. The others were open surgery. I wonder if they're doing that so she can have laproscopic surgery? (smaller scars, quicker out of hospital) That's what Dale was planning as well. I don't think it resulted in less hospitalization for Dale. He had a perforation. Possibly due to pain medications/constipation. (I'll have to go back and read it again to see if he says what the cause was thought to be). He also was hospitalized for an arythmia (sp?) . I think was a pre-existing problem. (I'll have to go back and read it again to see if he says whether the chemo worsened it). Chemo potentiates (heightens the effect of RT), but I don't understand why judicious RT can't suffice and not toxify her whole body with chemo. J > Chemo potentiates (heightens the effect of RT), but I don't understand why > judicious RT can't suffice and not toxify her whole body with chemo. Pardon me, for that last bit, because if called for from the post-surgery path report, she could be having chemo post-op. It's the doing both at the same time (neoadjuvant chemoradiotherapy) , that's unusual. J >> Chemo potentiates (heightens the effect of RT), but I don't understand why >> judicious RT can't suffice and not toxify her whole body with chemo. [quoted text clipped - 4 lines] > unusual. > J J, Thanks for that. I haven't found much myself, but don't want to ask too many questions if they don't want to consider a second opinion. I have to hope they trust the doctor. She is to be having chemo after surgery also, I'm told. I believe the surgery isn't going to be laproscopic either, or not that I've heard this far. I'm very worried about her. > >> Chemo potentiates (heightens the effect of RT), but I don't understand why > >> judicious RT can't suffice and not toxify her whole body with chemo. [quoted text clipped - 13 lines] > surgery isn't going to be laproscopic either, or not that I've heard > this far. I'm very worried about her. I'm sorry you're worried, Belle. I suppose the best way to think about it is that Dale got through it, so your friend probably will as well. Keep that positive thought. Hugs from me J |
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