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Medical Forum / Diseases and Disorders / Cancer / May 2004Chemo Now vs. Surgery and Chemo Later
Hi Folks, Recently my Mom completed a oxaliplatin folfox regimen for colon cancer and was given a remarkably clean bill of health after followup CAT and PET scans, as well as a colonoscopy. Unfortunately, the cancer appears to have metasticized in the last 2 months since chemo ended, and she now has as a very painful, hugely swollen lymph node. A new CT scan also reveals new liver tumors. Our question now is should we opt for surgery now to remove the lymph gland and possibly the liver tumors, realizing that recovery from surgery might push back the start of a new, aggressive chemo regimen by several weeks at least. Or, should we simply have the lymph gland drained via a much simpler procedure to relieve pain, so that the new chemo could begin immediately? Any wise sages want to weigh in on this subject? We need to make a decision in the next 24 hrs most likely. Thanks for any advice, or tips on where I could repost this question in hopes of getting some advice from even an oncologist. My Mom lives in a relatively small, isolated town, so we don't have another oncologist to take her to for a 2nd opinion. Thanks, John > Hi Folks, > [quoted text clipped - 12 lines] > drained via a much simpler procedure to relieve pain, so that the new > chemo could begin immediately? Where is the lymph gland? It is almost certain it could be controlled by some simple radiotherapy. > Any wise sages want to weigh in on this subject? We need to make a > decision in the next 24 hrs most likely. The question to ask is "What is the aim of treatment?" The situation you describe is not amenable to ure, and there is no evidence at all that "aggressive chemotherapy" will even extend survival time. The issue is quality of life, not quantity. Any treatment should be given with the aim of improving symptoms, and that certainly is not what invasive surgical procedures or aggressive chemo will do. The best advice would come from a palliative care specialist. Don't blindly go into nasty, side-effect laden treatments unless someone can convince you that there is evidence of some tangible benefit, otherwise you are just going backwards... > Thanks for any advice, or tips on where I could repost this question > in hopes of getting some advice from even an oncologist. My Mom lives [quoted text clipped - 3 lines] > Thanks, > John Just make sure you your oncologist an explain to you what the aim is of any proposed treatment, and how likely it is to be achieved. "Response rates" are not viable aims. Reductions in serum tumour markers are not viable aims. Improvements in CT scan appearances are not viable aims. Improvements in symptoms are.... > Hi Folks, > [quoted text clipped - 23 lines] > Thanks, > John Hello John, Welcome to alt.support.cancer. I'm sorry to hear of your mother's cancer. I see you posted to two newsgroups, slightly different post. Steph's a radiation oncologist (from Canada) who kindly offers time here to help us out. So you've got one opinion now. If we can be of help let us know. We've also got Mike R from AU who's a palliative care expert (symptoms etc). So do keep in touch and let us know how it's going. There's lots of caring support on this newsgroup. J > Hi Folks, > > Recently my Mom completed a oxaliplatin folfox regimen for colon > cancer and was given a remarkably clean bill of health after followup > CAT and PET scans, as well as a colonoscopy. <SNIP> Thanks for your input, Steph and J. Good food for thought. I'll post the same followup I did in the sci group, just so that it clarifies my question and may shed a little more light on the subject I'm trying to get someone to weigh in on. The lymph mass is in my Mom's abodmen. Our local oncologist has not suggested any radiation to my knowledge. But here's my more general question restated: Given the state of chemo today, are oncologists more likely to go after a fast-growing lymph mass (most likely cancerous), which is causing debilitating pain and lack of appetite in the patient, with surgery or drugs or radiation? Or is this situation still so individualized that there is no clear trend or prevailing opinion? Recent sonogram made the surgeon rule out any "simple" draining of the mass due to the irregular size and composition of the mass. So we have 2 choices: surgery to remove the lymph mass, followed by some period of recovery before chemo can begin, OR, start agressive chemo now and hope it brings down the mass and gets to work on any other cancer that is gaining a foothold. The oncologist and surgeon have virtually left this decision in our hands, not favoring one over the other. Due to the gravity of the decision, we have delayed implementing either option a few days so that we could try to find second opinions. Thanks for any suggestions or pointers! John > > Hi Folks, > > [quoted text clipped - 20 lines] > Recent sonogram made the surgeon rule out any "simple" draining of the > mass due to the irregular size and composition of the mass. Any mass which is causing local problems should be addressed by local treatment usually. That means radiation,or more rarely, surgery. > So we have 2 choices: surgery to remove the lymph mass, followed by > some period of recovery before chemo can begin, OR, start agressive > chemo now and hope it brings down the mass and gets to work on any > other cancer that is gaining a foothold. The oncologist and surgeon > have virtually left this decision in our hands, not favoring one over > the other. The only reason to consider surgery would be to alleviate symptoms, and radiotherapy can probably do that without an operation. What are you expecting "aggressive chemotherapy" to achieve apart from side-effects? > Due to the gravity of the decision, we have delayed implementing > either option a few days so that we could try to find second opinions. > > Thanks for any suggestions or pointers! > John > The only reason to consider surgery would be to alleviate symptoms, and > radiotherapy can probably do that without an operation. > What are you expecting "aggressive chemotherapy" to achieve apart from > side-effects? Our onc decided on "aggressive chemotherapy" to give us 5 or so more months. We've got Avastin now. Perhaps something better just down the road? Mary Wife to Darryl, diagnosed adenocarcinoma of the rectum stage III T3N1M0, March 2002. Resection on April 5, 2002. Began 5FU / Leucovorin May 2002. Began radiation June 2002. Tumor markers up March '04, CT shows dime size lesion on liver. April 23 '04 - PET imaging to check for other tumors. April 29 '04 - Peritoneal mets. Surgery not an option. 5FU and Camptosar to begin 05/11/04 via port. > > The only reason to consider surgery would be to alleviate symptoms, and > > radiotherapy can probably do that without an operation. [quoted text clipped - 15 lines] > Surgery not an option. > 5FU and Camptosar to begin 05/11/04 via port. But that is a hope, not based on evidence............. > > > The only reason to consider surgery would be to alleviate symptoms, and > > > radiotherapy can probably do that without an operation. [quoted text clipped - 17 lines] > > But that is a hope, not based on evidence............. Some don't want to hear, Steph. Try something different. I was just reading Bookbabe's post http://groups.google.com/groups?selm=h6fuivgbg686cer2kgfu8opqehp7um447n%404ax.co m&output=gplain Date: Tue, 05 Aug 2003 "I spent most of last summer in the bathroom with uncontrollable bouts of diarrhea. In one week I went through 90-odd immodium in one week, without any let up. The chemo I was taking caused the diarrhea. Did it also help me to live longer? There's no way of knowing. And during those six weeks I seldom left the house because I felt so lousy with the big D. Was taking the chemo the right choice? Did it give me more extra time than it took from me? (I mean quality time- time spent with my sister, for example)." (I assume that's the point that Michele quit chemo after summer 02 and she passed away Dec/03) Based on your knowledge/experience with Camptosar (then Avastin), and rectal cancer with peritoneal and liver mets (which I don't think Michelle had), how (do you predict) that it will it go for Marg's husband? J > Based on your knowledge/experience with aggressive 5-FU and Camptosar (then Avastin), and rectal > > cancer with peritoneal and liver mets (which I don't think Michelle had), how > (do you predict) that it will it go for Mary's husband? made several corrections (sorry Mary for calling you Marg) J > > > > The only reason to consider surgery would be to alleviate symptoms, and > > > > radiotherapy can probably do that without an operation. [quoted text clipped - 21 lines] > Try something different. > I was just reading Bookbabe's post http://groups.google.com/groups?selm=h6fuivgbg686cer2kgfu8opqehp7um447n%404ax.co m&output=gplain > Date: Tue, 05 Aug 2003 > "I spent most of last summer in the bathroom with uncontrollable bouts of [quoted text clipped - 13 lines] > (do you predict) that it will it go for Marg's husband? > J Predictions for an individual are impossible............. Predictions based on groups are........... The median survival in these circumstances is about 9 months. Chemotherapy does not significantly affect that. Note that is "median". 50% of people do better, and 50% do worse, and that is irrespective of treatment. I can tell you what my choices would be if I had metastasic colon cancer. If I was well, I would get on with life. If and when I became unwell, I would ask myself my "questions" <SNIP> > The median survival in these circumstances is about 9 months. Chemotherapy > does not significantly affect that. Note that is "median". 50% of people do [quoted text clipped - 3 lines] > I was well, I would get on with life. If and when I became unwell, I would > ask myself my "questions" Steph, I appreciate your view "from the trenches", but you seem to be saying that you would go straight for hospice with such a diagnosis? I was heartened last year to read reports on colon cancer that were starting to use the "c" word...as in cure...in light of recent treatments. I agree with you wholeheartedly that cancer seems to be quite a different beast in every patient, but recent developments seem to be watershed events, giving us a little hope. I was especially surprised by the notion that chemo does not significantly help "metastasic colon cancer" patients. I would expect that to be true 5 or 10 years ago, but do you feel this is still true in light of the latest chemo regimens? Thanks, John > <SNIP> > [quoted text clipped - 10 lines] > I appreciate your view "from the trenches", but you seem to be saying > that you would go straight for hospice with such a diagnosis? No, I would go straight to the golf course, or sailboat, or whatever I liked to do best. I might register with hospice too........ > I was heartened last year to read reports on colon cancer that were > starting to use the "c" word...as in cure...in light of recent [quoted text clipped - 9 lines] > Thanks, > John I didn't say that, John. Chemotherapy may "help" if it improves symptoms, and that depends on the symptoms. It does not significantly improve survival in the circumstances you described, and in a patient who has no symptoms, it can only make them feel worse........... Someday in the distant future, archeologists digging thru the ruins of alt.support.cancer will discover that "Steph" <steph@vancouver.island> had this to say on 17 May 2004: >> "Steph" <steph@vancouver.island> wrote in message > news:<8UAoc.459191$oR5.56659@pd7tw3no>... [quoted text clipped - 22 lines] > No, I would go straight to the golf course, or sailboat, or whatever I > liked to do best. I might register with hospice too........ It's amazing how many people have difficulties understanding that. My wife keeps wanting me to waste weekends with cancer support groups that sit around talking about our cancers. One guy there obsesses on his so much that he is still attending 20 yrs after being cancer free. Personally, I hope never to see the place again. Get me to the side of a stream with my newly discovered fly fishing rod and reel.  SignatureSturgeon's Law as applied to discussion lists Axiom #3: "Sturgeon's Law (90% of everything is crap) applies to discussion lists." Corollary #5: "In an unmoderated discussion, no one can agree on what constitutes the 10%." Corollary #6: "Nothing guarantees that the 10% isn't crap, too." > Someday in the distant future, archeologists digging thru the ruins of > alt.support.cancer will discover that "Steph" <steph@vancouver.island> [quoted text clipped - 33 lines] > Get me to the side of a stream with my newly discovered fly fishing rod > and reel. I see your point. Are you aiming for "cancer free", Socks? For some reason, I thought you were aiming for relief from pain? And you just posted that "pain is up, stamina is down".. J Someday in the distant future, archeologists digging thru the ruins of alt.support.cancer will discover that J <jackson@invalid.nul> had this to say on 18 May 2004: >> It's amazing how many people have difficulties understanding that. >> My wife keeps wanting me to waste weekends with cancer support groups [quoted text clipped - 10 lines] > And you just posted that "pain is up, stamina is down".. > J I'm just against fixating. I'll never be cancer free. I'll die sometime in the next year. I'm venting now because my wife keeps after me to attend these weekend "support groups" where everyone sits around feeling sorry for themselves instead of getting out and doing things. SignatureSturgeon's Law as applied to discussion lists Axiom #3: "Sturgeon's Law (90% of everything is crap) applies to discussion lists." Corollary #5: "In an unmoderated discussion, no one can agree on what constitutes the 10%." Corollary #6: "Nothing guarantees that the 10% isn't crap, too." I have only just begun my trip down the cancer path but I am a long time fly fisherman and I can tell you nothing gives me greater peace of mind than a day on the water. Depression is contagious so I have avoided group sessions as that is all I seem to come away with afterwards. Now a day whipping up the water with my fav. fly not only invigorates me it, I know it sounds ridiculous, but I actually feel healthier. Good Luck and tight lines and welcome to the sport my friend. SignatureGreg > Someday in the distant future, archeologists digging thru the ruins of > alt.support.cancer will discover that J <jackson@invalid.nul> had this [quoted text clipped - 19 lines] > attend these weekend "support groups" where everyone sits around feeling > sorry for themselves instead of getting out and doing things. > <snip>I'm just against fixating. Understood > I'll never be cancer free. I'll die sometime in the next year. I don't want to hear this. :( Let's keep talking fish. > I'm venting now because my wife keeps after me to > attend these weekend "support groups" where everyone sits around feeling > sorry for themselves instead of getting out and doing things. Maybe she should go instead...? or I would ask her "when you've got PMS, do you want to sit around with a bunch of women who also have it or do you want to get out and forget about it?" I can't say that I know exactly how you feel, but years ago I pursued counselling for depression. For years, different venues. The final straw for me was a group who moaned and groaned about everything. It was soooo depressing to listen to them week after week. I kept wanting to say "get to the point" or "do something different since this isn't working for you". After six months of listening to that (moans and groans), it was either suicide or quitting, so I quit. I cheer me up myself instead. <grin> J > > <snip>I'm just against fixating. > [quoted text clipped - 3 lines] > > I don't want to hear this. :( Let's keep talking fish. Maybe you don't want to hear it, but Socks needs to be able to say it. We need to be able to talk about it because that's what we're all afraid of. I bet that every one of the cancer patients in this group thinks about the possibility that they're going to die sooner rather than later. It's a terrifying thing for some of us, and it's wonderful to hear from somebody like Socks who seems to have come to grips with that - and who is living (or trying to live, when he's not being forced to sit around in depressding support groups) with the knowledge that he's not going to be around 10 years from now. I remember when I first came here. I talked about being petrified that I might have cancer. John, the Labrat replied to my post and had all these good things to say about all of the possible options. He was dying, but he could find something good in the life he still had. Now that was support. Come to think of it, Socks: You are attending a support group already. After all, this is alt.SUPPORT.cancer.... :-) > > I'm venting now because my wife keeps after me to > > attend these weekend "support groups" where everyone sits around feeling [quoted text clipped - 15 lines] > I cheer me up myself instead. <grin> > J Yup, that's it. It's not really a support group, if you're just sitting there feeling sorry for yourself. You can do that at home by yourself... A support group should allow you to moan, but moaning shouldn't be the main objective. Elsie > > > <snip>I'm just against fixating. > > [quoted text clipped - 5 lines] > > > Maybe you don't want to hear it, but Socks needs to be able to say it. Agreed Elsie. I think I was just "emoting" - I get attached to regular posters here and it pains me to consider the possibility of losing any of you. But that's my problem, so talk away. > We need to be able to talk about it because that's what we're all > afraid of. I bet that every one of the cancer patients in this group [quoted text clipped - 10 lines] > was dying, but he could find something good in the life he still had. > Now that was support. I also miss the exchanges that used to happen here. I guess it took one person to start a subject (like Lowkey or CAT) and from there, various exchanges and threads happened. I'ts not happening anymore and I'm not sure why. > Come to think of it, Socks: You are attending a support group already. > After all, this is alt.SUPPORT.cancer.... :-) I agree on that too, but I get the impression Socks is doing other things he'd rather do and is "blogging' his journey and thoughts elsewhere. Anyhow thanks for your post and thoughts. Maybe others will jump in here and share with you. Hugs Elsie J Someday in the distant future, archeologists digging thru the ruins of alt.support.cancer will discover that J <jiminy@example.org> had this to say on 21 May 2004: > I agree on that too, but I get the impression Socks is doing other > things he'd rather do and is "blogging' his journey and thoughts > elsewhere. http://oriez.org/blog/ for my blog, which includes a link to the recent fly fishing trip at the top. SignatureSturgeon's Law as applied to discussion lists Axiom #3: "Sturgeon's Law (90% of everything is crap) applies to discussion lists." Corollary #5: "In an unmoderated discussion, no one can agree on what constitutes the 10%." Corollary #6: "Nothing guarantees that the 10% isn't crap, too." > http://oriez.org/blog/ for my blog, which includes a link to the recent fly > fishing trip at the top. [quoted text clipped - 6 lines] > constitutes the 10%." > Corollary #6: "Nothing guarantees that the 10% isn't crap, too." Thanks Socks, so much good reading there. I got caught up in trying to save the pdf to find the math error, then a thunderstorm shut me down in the middle of that. (see I did go down to the beginning).. I note the importance of keeping posts short (for you). So thank you for sharing. I'll save and try to explore more later. J > > > > <snip>I'm just against fixating. > > > [quoted text clipped - 9 lines] > and it pains me to consider the possibility of losing any of you. But that's my > problem, so talk away. I know what you mean. I haven't even been here all that long and I find myself getting attached to the people in this group. I especially miss Bookbabe and Lowkey. Somehow they managed to strike a chord with me - and not only because they had a similar cancer to mine. The reason I jumped in by the way was because I'm having a hard time with this dying business right now. My CT scan is coming up and I have read enough about recurrent colon cancer to know that the odds of surviving that long term are pretty low. I know, I might never have any mets and I might be worrying for nothing, but unfortunately, I do have to think about this. What would I do, if they find mets in that scan - or in a scan in the future? I'd like to be able to just take time off from work, hang out with my kids and my family, travel - all that good jazz, but the reality is that that's probably not possible. I'm a single Mom, my kids still need to eat so I still need to work. I'm looking at wasting 1/3 of my remaining time at a job I am not cazry about. But I don't think I have any other choices... Then there is the question as to what is going to happen to them when I'm gone. What kind of life can my Ex give them? What kind of people are they going to be, if he is raising them? Oh well, ignore me, I'm whining... For right now I'm cancer free, healthy and feel good. I better get on with life for today - and worry about the mets if they ever find any... > > We need to be able to talk about it because that's what we're all > > afraid of. I bet that every one of the cancer patients in this group [quoted text clipped - 14 lines] > start a subject (like Lowkey or CAT) and from there, various exchanges and threads > happened. I'ts not happening anymore and I'm not sure why. Maybe it's that we lost some of the very central people in this group? I'm not really sure that I agree with the observation, though. I think there have been some very fruitful exchanges between caretakers recently. > > Come to think of it, Socks: You are attending a support group already. > > After all, this is alt.SUPPORT.cancer.... :-) > > I agree on that too, but I get the impression Socks is doing other things he'd rather > do and is "blogging' his journey and thoughts elsewhere. That could be the case > Anyhow thanks for your post and thoughts. Maybe others will jump in here and share > with you. > Hugs Elsie > J Thanks, J Elsie > > > > > <snip>I'm just against fixating. > > > > [quoted text clipped - 15 lines] > chord with me - and not only because they had a similar cancer to > mine. Memory lane http://tinyurl.com/3aqq2 toonies, loonies, dubloonies (were you here back then?) I think Lowkey was like my friend Ed. He'd start a subject from what I call "out of left field" and from there the funniest and most wonderful threads happened. Yes, I miss the "old crowd". J > The reason I jumped in by the way was because I'm having a hard time > with this dying business right now. My CT scan is coming up and I [quoted text clipped - 5 lines] > What would I do, if they find mets in that scan - or in a scan in the > future? Well coincidentally I started a thread about that and Steph clarified. > I'd like to be able to just take time off from work, hang out with my > kids and my family, travel - all that good jazz, but the reality is [quoted text clipped - 5 lines] > give them? What kind of people are they going to be, if he is raising > them? I see your point and understand. > Oh well, ignore me, I'm whining... For right now I'm cancer free, > healthy and feel good. I better get on with life for today - and > worry about the mets if they ever find any... No, why ignore you? These are exactly questions surely others wonder about. And I do remember a lady from Manitoba? who was contemplating same/similar issues/problems. So hopefully others will join you here in this thread. Hugs J > I'm just against fixating. I'll never be cancer free. I'll die sometime > in the next year. I'm venting now because my wife keeps after me to > attend these weekend "support groups" where everyone sits around feeling > sorry for themselves instead of getting out and doing things. You are right, support groups are not for everybody. Groups of supporting people around you (family, friends etc) are what really get you through. Having said that there are people who get a lot out of support groups. Maybe it's your wife that needs a support group. Many people don't seem to realise that it's the carers who suffer most, after all they have to carry on when you're gone! MIKE As a caregiver, I keep my sanity by listening and talking with groups such as this one, makes me feel not so alone. I think women are more apt to take this approach and find that this venue works. My husband finds some serenity and happiness in other places...work...and escpecially friends who aren't dealing with cancer. He has an upcoming reunion with some ex-Marine buddies and this will be the absolute best therapy for him right now. Take care, Mary > You are right, support groups are not for everybody. Groups of supporting > people around you (family, friends etc) are what really get you through. [quoted text clipped - 3 lines] > on when you're gone! > MIKE > Someday in the distant future, archeologists digging thru the ruins of > alt.support.cancer will discover that J <jackson@invalid.nul> had this [quoted text clipped - 19 lines] > attend these weekend "support groups" where everyone sits around feeling > sorry for themselves instead of getting out and doing things. Socks, you are one of the healthiest people on this NG................ > Someday in the distant future, archeologists digging thru the ruins of > alt.support.cancer will discover that J <jackson@invalid.nul> had this [quoted text clipped - 20 lines] > attend these weekend "support groups" where everyone sits around feeling > sorry for themselves instead of getting out and doing things. Does your wife know how you feel? Have you ever told her that you'd rather go fly fishing, or maybe do something fun with her(?) than sit around wasting precious time with strangers? Mike is right, maybe she needs a support group for caretakers. Chances are she's just trying to do what's best for you. Unfortunately, you're the only one who can figure that out. Elsie I am more familiar with lung. However, my understanding is that there are no chemo regimens showing significant success with solid tumors. It is the new gene therapies Iressa, erbitux, even Celebrex, which are showing success. Maybe its a question of terminology, since I look at chemo as a way of killing cells, when the gene therapies target particular receptors. >Subject: Re: Chemo Now vs. Surgery and Chemo Later >From: jwiljunk@yahoo.com (JWil) [quoted text clipped - 30 lines] >Thanks, >John > Predictions for an individual are impossible............. > Predictions based on groups are........... [quoted text clipped - 6 lines] > I was well, I would get on with life. If and when I became unwell, I would > ask myself my "questions" Short - concise and oh so smart..... That's what we love about you, Steph. I think I need to take this little snippet and put is somewhere together with your "questions" that J posted again recently. I hope that I'll never have to use it, but I know that if my rectal cancer ever turns into metastatic rectal cancer, I'll have some choices to make... The choice might be to leave well enough alone - or to fight tooth and nail for that next day (or that next breath) no matter how sick I am and how bad I feel, because being alive for one more day is worth the price I am having to pay. I don't think I can make those decisions now, and nobody can make them for me - but thanks for putting all that out there so I'll have a little mental aid to make that decision if (I hope that's not "when") it ever comes to that point. Elsie |
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