Lower stage cancers and less aggressive treatments
It seems to me like I'm seeing a trend on here where people who are initially diagnosed with lower staged cancer, say stage two, are not surviving as long as people with higher stages or are having more severe relapses. Am I correct? This has me wondering if the professionals aren't treating them as aggressively as they ought to. When I spoke to the oncologist last time she mentioned that if I'd been at stage two instead of three they might not be doing mop up chemo for me now. I've been thinking about this and worrying that maybe some people aren't getting what they really need and are paying for it later.
Am I understanding things wrong or is this a concern? I'm a big advocate of early detection and keep encouraging people to get their colonoscopies done and stay on top of things. If this is something that should be addressed then I want to be an advocate for that as well. But is it that many stage two people on here just get better and disappear so the numbers I think I'm seeing aren't accurate?
Thanks for any advice, information or thoughts on this.
Jan
Comments
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You can really loose it
Trying to second guess cancer. I was stage 3 c into six nodes. I was treated at a time when treatment very nearly killed the patient. In fact one of the drugs I was on was banned in 2001 for sometimes fatal side effects and (the escape clause) the availability of better treatments. The drug was levamisole and it was administerred in a weight critical dose . Too little and it did nothing,, Too much and it could kill you . Just right well I have been ca free for nearly sixteen years but I suffer from a host of auto-immune diseases. Levamisole was a drug in the family of immuno modulators. Sounds scary and probably was. I have known quite a few stage oners and two ers who are still alive and cancer fee and no longer feel the need to visit here. In general terms most recurrance seems to occur in the first 18 mos after the original surgery. Cheers Ron one of the old timers.
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Maybe maybe not
I think the reason you are seeing allot of people who have had lower stage cancer recure and become stage IV is because a vast number of our lower stage survivors do not come back to the forum once they are NED.
Even the short time I have been a member of this site, I have known many who were Stage III who no longer join us, or join us occasionally for an update. I think because of this, the number of recurrances is sqewed.
Just my opinion.
Sue - Trubrit
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So maybe it is just how I'mTrubrit said:Maybe maybe not
I think the reason you are seeing allot of people who have had lower stage cancer recure and become stage IV is because a vast number of our lower stage survivors do not come back to the forum once they are NED.
Even the short time I have been a member of this site, I have known many who were Stage III who no longer join us, or join us occasionally for an update. I think because of this, the number of recurrances is sqewed.
Just my opinion.
Sue - Trubrit
So maybe it is just how I'm reading it then. Thank you. I was getting a bit panicky for people with lower stages and worried about them. I just don't want anybody to ever have this diagnosis again ever and I know I can't fix the world but if someone can be helped I want to help them. I couldn't have imagined how hard this would all be and I've had it pretty easy. So much easier than many of you, so far at least.
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Tend to agree
There may be a high rate of NED/cure with the lower level stagings that do not metastisize; I've seen no research either way. Yet, once the initial shock of the diagnosis is past and treatment starts to be productive I, for one, can see were a forum like this could become less appealing. JMHO though...respectfully, Art
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simple biology ignored
The most successful published stage II results I've seen are with targeted cimetidine with low dose oral UFT (or 5FU, ugh) for 12-24 months. Inexpensive UFT-CIM-PSK with few side effects, if you are above average CA19-9 (and CSLEX1/CEA) levels, could massively shift the stage II survival results. Excluding small minorities, like the signet ring cell and mucinous cases, the stage II people with CA19-9 and CSLEX1, are predictable - the ones vastly likely to recur, and die. Stage II recurs are a massive story of misery and wasted lives.
The problem is FDA and medical inertia. Without tumor masses, I am not so sure that capecitabine, generic xeloda, is a fully adequate substitute for UFT. Capecitabine certainly has more pronounced side effects. Generic UFT, with several $1-2 pills, isn't available in North America. Even getting CA19-9 tissue stains is a local political nightmare. The US situation, unavailability of UFT and the lack of CA19-9/CSLEX1 tissue stains on demand, makes me sick.
A massively hot rodded UFT-CIM-PSK formula has worked wonderfully well for my stage IV wife, who like the mCRC majority, is positive for CA19-9 and CSLEX. She's been on chemo for over 4 years, and can play the piano while on treatment. WTF.
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I was diagnosed stage II fivetanstaafl said:simple biology ignored
The most successful published stage II results I've seen are with targeted cimetidine with low dose oral UFT (or 5FU, ugh) for 12-24 months. Inexpensive UFT-CIM-PSK with few side effects, if you are above average CA19-9 (and CSLEX1/CEA) levels, could massively shift the stage II survival results. Excluding small minorities, like the signet ring cell and mucinous cases, the stage II people with CA19-9 and CSLEX1, are predictable - the ones vastly likely to recur, and die. Stage II recurs are a massive story of misery and wasted lives.
The problem is FDA and medical inertia. Without tumor masses, I am not so sure that capecitabine, generic xeloda, is a fully adequate substitute for UFT. Capecitabine certainly has more pronounced side effects. Generic UFT, with several $1-2 pills, isn't available in North America. Even getting CA19-9 tissue stains is a local political nightmare. The US situation, unavailability of UFT and the lack of CA19-9/CSLEX1 tissue stains on demand, makes me sick.
A massively hot rodded UFT-CIM-PSK formula has worked wonderfully well for my stage IV wife, who like the mCRC majority, is positive for CA19-9 and CSLEX. She's been on chemo for over 4 years, and can play the piano while on treatment. WTF.
I was diagnosed stage II five years ago. NED since...no chemo after much back and forth with onc, surgeon, and tumor board. Close follow up. Recovery complicated by bad infection ( 3 mos), 3 hospitalizations and a flare up of autoimmune hepatitis. Nothing compared to what every one here has gone through. Eight people in my family have had colon cancer...4 on my mother's side, 4 on my Dad's, including my father. Six have died from it. Genetic testing has found no link!
I stay on the board to give back, to learn, and I suspect because a piece of me still thinks it will recur or a new cancer will show its face. The women and men on this forum inspire me every day. I pray for them, learn from them, and receive courage to live each day to the fullest.
Thanks to each of you.
CM
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Thank you so much for theCathleen Mary said:I was diagnosed stage II five
I was diagnosed stage II five years ago. NED since...no chemo after much back and forth with onc, surgeon, and tumor board. Close follow up. Recovery complicated by bad infection ( 3 mos), 3 hospitalizations and a flare up of autoimmune hepatitis. Nothing compared to what every one here has gone through. Eight people in my family have had colon cancer...4 on my mother's side, 4 on my Dad's, including my father. Six have died from it. Genetic testing has found no link!
I stay on the board to give back, to learn, and I suspect because a piece of me still thinks it will recur or a new cancer will show its face. The women and men on this forum inspire me every day. I pray for them, learn from them, and receive courage to live each day to the fullest.
Thanks to each of you.
CM
Thank you so much for the responses everyone. I so appreciate it.
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I am a stage 2a that has hungJanJan63 said:Thank you so much for the
Thank you so much for the responses everyone. I so appreciate it.
I am a stage 2a that has hung around. I don't post much, but I've learned so much here, and continue to hope for the best for everyone. I received 6 rounds of xeloda. It's been 2 years since my surgery and so far so good. My cancer is signet ring cell. Oncologist seem to know very little about signet ring at stage 2a. Mine says because they know so little about it that it's just treated like any other kind. So, this week my onc moved my next appt to 6 months away and says no mote ct scans unless I have symptoms. I should be happy, but somehow I feel abandoned--silly I know, especially when voiced to so many brave people. You're all amazing!
Cathy
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What is the signet ring cell?chp said:I am a stage 2a that has hung
I am a stage 2a that has hung around. I don't post much, but I've learned so much here, and continue to hope for the best for everyone. I received 6 rounds of xeloda. It's been 2 years since my surgery and so far so good. My cancer is signet ring cell. Oncologist seem to know very little about signet ring at stage 2a. Mine says because they know so little about it that it's just treated like any other kind. So, this week my onc moved my next appt to 6 months away and says no mote ct scans unless I have symptoms. I should be happy, but somehow I feel abandoned--silly I know, especially when voiced to so many brave people. You're all amazing!
Cathy
What is the signet ring cell? Would they have told me if I had that? I feel like you guys know so much more about your situations than I do.
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Signet ring cell is a rareJanJan63 said:What is the signet ring cell?
What is the signet ring cell? Would they have told me if I had that? I feel like you guys know so much more about your situations than I do.
Signet ring cell is a rare type of colon cancer. i believe it occurs in about 1% of colon cancers. It is a very agressive cancer. Not often caught until late stage. I didn't have any symptoms really. The only reason mine was caught early was because my mom was diagnosed with colon cancer 3 months before me. Her surgeon urged me to get a colonoscopy even though it had only been 8 years since my last one. My mom feels like her cancer was worth it because it saved my life. I'm happy to add that she is doing very well!
I'm sure they would have mentioned it if you had this type.
cathy
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Okay, thanks. I liketanstaafl said:src
It's rare, like 1%. It's different, they would tell you.
Okay, thanks. I like information. It makes me feel like I have some sort of control over a situation where I have very little. It drives me crazy that there's so little information about cancer in general and the cancer that we deal with on here that is absolute. I want a spreadsheet and real information, not all the crap that's all over the internet. Don't eat sugar! Starve your cancer! Right. I realize that the reality is that there's so much they don't know but it's so freaking frustrating!
And if doctors are saying that several family members have the same cancer and it's not genetic then I'd have to say that they just haven't found the link with their science yet to prove it, not that it's isn't genetic. I remember when my daughter was teething and she'd get a runny nose. Most children do. I read that they haven't found proof that there's a link. They just hadn't found proof yet, that's all, there has to be a link because it happens so often. Closed minded thinking will hold back the scientific community.
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i had stage 2 back in 2010 drJanJan63 said:Okay, thanks. I like
Okay, thanks. I like information. It makes me feel like I have some sort of control over a situation where I have very little. It drives me crazy that there's so little information about cancer in general and the cancer that we deal with on here that is absolute. I want a spreadsheet and real information, not all the crap that's all over the internet. Don't eat sugar! Starve your cancer! Right. I realize that the reality is that there's so much they don't know but it's so freaking frustrating!
And if doctors are saying that several family members have the same cancer and it's not genetic then I'd have to say that they just haven't found the link with their science yet to prove it, not that it's isn't genetic. I remember when my daughter was teething and she'd get a runny nose. Most children do. I read that they haven't found proof that there's a link. They just hadn't found proof yet, that's all, there has to be a link because it happens so often. Closed minded thinking will hold back the scientific community.
i had stage 2 back in 2010 dr didn't seem to think i needed anything so 4 yrs later, in between i went for blood tests every 6 mths all good, i had pains in abdomen found i had cancer in 1 lympth node around my colon had 12 treatments of folfox with avastin done oct 1st had 2 scans one in july one after i finished came back clear. happy on that just wished i could of had some treatment 4 years ago
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So .. what do you do....tanstaafl said:simple biology ignored
The most successful published stage II results I've seen are with targeted cimetidine with low dose oral UFT (or 5FU, ugh) for 12-24 months. Inexpensive UFT-CIM-PSK with few side effects, if you are above average CA19-9 (and CSLEX1/CEA) levels, could massively shift the stage II survival results. Excluding small minorities, like the signet ring cell and mucinous cases, the stage II people with CA19-9 and CSLEX1, are predictable - the ones vastly likely to recur, and die. Stage II recurs are a massive story of misery and wasted lives.
The problem is FDA and medical inertia. Without tumor masses, I am not so sure that capecitabine, generic xeloda, is a fully adequate substitute for UFT. Capecitabine certainly has more pronounced side effects. Generic UFT, with several $1-2 pills, isn't available in North America. Even getting CA19-9 tissue stains is a local political nightmare. The US situation, unavailability of UFT and the lack of CA19-9/CSLEX1 tissue stains on demand, makes me sick.
A massively hot rodded UFT-CIM-PSK formula has worked wonderfully well for my stage IV wife, who like the mCRC majority, is positive for CA19-9 and CSLEX. She's been on chemo for over 4 years, and can play the piano while on treatment. WTF.
Tanstaafl... You've gotten a couple of e-mails from me over the last 4+ years. I started following (lurking if you will) this CSN area when a close friend was diagnosed with colon cancer. Then my brother was diagnosed with pancreatic cancer. So I looked into other CSN blog areas and found THE discussion was here, in the colorectal blog. You guys and gals are the real deal....
I have observed the dynamic ebbs and flows of this amazing space... and shared tears with you for the losses...
Now I am diagnosed with breast cancer. And I am struggling with the balance of how aggressive to treat an early stage... really what this thread is all about.....
Maggie
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I'm sorry to hear thatMaggieCat said:So .. what do you do....
Tanstaafl... You've gotten a couple of e-mails from me over the last 4+ years. I started following (lurking if you will) this CSN area when a close friend was diagnosed with colon cancer. Then my brother was diagnosed with pancreatic cancer. So I looked into other CSN blog areas and found THE discussion was here, in the colorectal blog. You guys and gals are the real deal....
I have observed the dynamic ebbs and flows of this amazing space... and shared tears with you for the losses...
Now I am diagnosed with breast cancer. And I am struggling with the balance of how aggressive to treat an early stage... really what this thread is all about.....
Maggie
I'm sorry to hear that Maggie. Damn cancer. A friend of mine finished breast cancer treatments last year and now she's being checked for another cancer, I'm not sure what. It seems like she should get a pass after the breast cancer, you know? I wish I knew more about it but I don't.
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Just can't agree
Like others have said, people with lower grades that have recurrence can have doctors that don't follow up as well as others, or don't do "mop up" or don't have follow up colonoscopies within a good time frame. It can be a lot of different things. There are some doctors that only rely on CEA markers which are not good indicators for me or others. There is a friend of mine that he quit seeing her after 2 years of treating her. And many on this board have left because they don't want to be reminded of what they went through and only come here for support and help when they were going through things but now feel they don't want the interaction. I'm always wanting to help no matter what I've been through. Anytime I'm able to help - I'm here. Lower stage people still have an advantage if treated correctly, but stages above have a great history of recovery if they have the right treatment. There are a lot of 3-4 stages that have survived here and are active on this board. Stay positive.
Kim
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Stage 2
MY husband was dx'd in Dec of 2012 and passed away 1week ago. He followed every recommendation and treatment from the day of diagnosis until 9/22 when they said no more chemo. He had had 4 colonoscopies from age 50 to 59 with some polyps but nothing cancerous or pre-cancerous.
Poor treatment and misread ct scan last December lead to 2 months of being treated for constipation when another large tumor was growing. 21 miserable days in the hospital in Jan. Switched to new cancer center in March but outcome coud not be changed. His original tumor was in colon, 2nd tumor in sm intestines and then spread to 2 distant lymph nodes, which ultimately caused his death. I am still kind of numb about it and try not to dwell on the "what ifs" but the poor man suffered so and I can't get certain images out of my mind when I close my eyes. I feel he wasted a whole year with poor medical management and it saddens me that he was treated like 'just another patient'
It just seems like such a waste. I did not find too many others on this board that were stage 2 so I can't say how others fared. All cancer makes me sad
Linda
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Cyber hugs, LindaLindaK. said:Stage 2
MY husband was dx'd in Dec of 2012 and passed away 1week ago. He followed every recommendation and treatment from the day of diagnosis until 9/22 when they said no more chemo. He had had 4 colonoscopies from age 50 to 59 with some polyps but nothing cancerous or pre-cancerous.
Poor treatment and misread ct scan last December lead to 2 months of being treated for constipation when another large tumor was growing. 21 miserable days in the hospital in Jan. Switched to new cancer center in March but outcome coud not be changed. His original tumor was in colon, 2nd tumor in sm intestines and then spread to 2 distant lymph nodes, which ultimately caused his death. I am still kind of numb about it and try not to dwell on the "what ifs" but the poor man suffered so and I can't get certain images out of my mind when I close my eyes. I feel he wasted a whole year with poor medical management and it saddens me that he was treated like 'just another patient'
It just seems like such a waste. I did not find too many others on this board that were stage 2 so I can't say how others fared. All cancer makes me sad
Linda
You are in my thougts. Be good to yourself. We care!
Sue - Trubrit
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I can only speak to my ownron50 said:You can really loose it
Trying to second guess cancer. I was stage 3 c into six nodes. I was treated at a time when treatment very nearly killed the patient. In fact one of the drugs I was on was banned in 2001 for sometimes fatal side effects and (the escape clause) the availability of better treatments. The drug was levamisole and it was administerred in a weight critical dose . Too little and it did nothing,, Too much and it could kill you . Just right well I have been ca free for nearly sixteen years but I suffer from a host of auto-immune diseases. Levamisole was a drug in the family of immuno modulators. Sounds scary and probably was. I have known quite a few stage oners and two ers who are still alive and cancer fee and no longer feel the need to visit here. In general terms most recurrance seems to occur in the first 18 mos after the original surgery. Cheers Ron one of the old timers.
I can only speak to my own experiences. Also, my cancer was in the small intestine (which is incredibly rare), but I'm told the treatment is pretty much the same.
I was stage 2b and had surgery in August 2013. The tumor itself was fairly large and had caused a near blockage and was nearly through the wall of the intestine. Cells were moderately differentiated, nothing in the lymph nodes, no vascular invasion.
My surgeon gave me the option of chemo/no chemo. He said for a lot of stage 2s, it's not necessarily standard, but given my young age (I was in my 30s) and the size of the original tumor and the impression that small intestine cancer can be somewhat more aggressive, I was given the option. FOLFOX sucked hard (12 sessions total), but I was committed to doing everything I could to prevent recurrence.
So far, I'm NED. I've had blood work and two CTs (with another CT scheduled in December). God willing, the cancer will never recur and I will recover my strength and from the neuropathy. I'm still scared at every scan and labs though. And I'm not sure I'll ever have the energy and health I once imagined. Still, I'm glad I did everything I knew to do, and I hope others will have that opportunity.
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If Only...LindaK. said:Stage 2
MY husband was dx'd in Dec of 2012 and passed away 1week ago. He followed every recommendation and treatment from the day of diagnosis until 9/22 when they said no more chemo. He had had 4 colonoscopies from age 50 to 59 with some polyps but nothing cancerous or pre-cancerous.
Poor treatment and misread ct scan last December lead to 2 months of being treated for constipation when another large tumor was growing. 21 miserable days in the hospital in Jan. Switched to new cancer center in March but outcome coud not be changed. His original tumor was in colon, 2nd tumor in sm intestines and then spread to 2 distant lymph nodes, which ultimately caused his death. I am still kind of numb about it and try not to dwell on the "what ifs" but the poor man suffered so and I can't get certain images out of my mind when I close my eyes. I feel he wasted a whole year with poor medical management and it saddens me that he was treated like 'just another patient'
It just seems like such a waste. I did not find too many others on this board that were stage 2 so I can't say how others fared. All cancer makes me sad
Linda
LindaK... My brother passed away in December, pancreatic cancer. He was first diagnosed with prostate cancer and given treatment for that. Did the cancer treatment professionals miss an earlier opportunity to focus on the real issue? Maybe. Sharing his daughter's words to me, arrived two days ago in the mail. She was his right hand through the fight. 11 months on these are her words to me... and my words to you...
"you are going to be Okay.. Life is a walk that you take every day to learn all sorts of lessons along the way... the best thing to remember, come what may.....you are going to be okay"
Blessings to you Linda....
Maggie
0
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