I stand up to use the word cure(d)....

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janderson
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Re: I stand up to use the word cure(d)....

Postby janderson » Sat Jun 02, 2012 9:11 am

Cptmac. I agree that you are cured going nearly 8 years NED.

Vancouver eve i totally agree with your statement. Stage 4 is a totally different animal than stage 1,2,3. I cant evan relate to people who are not stage 4. Stage 4 is like a totally different disease. Dont get me wrong cancer sucks no matter what stage and i pray that all of the early stage cancer survivirs remain that way. It is a quantum leap from 3 to 4 and can be so incredibly complicated.
DX 10-05 stage IV
liver resection 12-05 Folfox1-05 to 7-06
Liver resection 8-07 Folfiri 9-07 to 3-08
Liver resection 12-11
Recurrence 2/7/2014, liver, chestwall mets, 16 rounds chemo
7/3/14, y90 radioembolization, steady shrinkage
12/8/14, cryoablation to liver and chest wall
6/1 to 6/26 SBRT radio surgery
7/2 more cryo ablation to right lung
7/16 lung infection drain tube installed
9/4 chest wall resection to remove 2 ribs

vancouver eve
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Re: I stand up to use the word cure(d)....

Postby vancouver eve » Sat Jun 02, 2012 12:38 pm

Daydays, you have read my posting incorrectly. I support stage 3 cancer people but what bothers me is that a stage 1 or2 that has never endured what the rest of us have gone through, can say they get how we feel. If someone has been a stage 1,2 and required little if any treatment, how can they understand what others who have received treatment for years are going through. Galen gets what it is like because she has been there. There are others on the site in the same situation and they know the difficulties. Most stage 3 or 4's have been in treatment on and off for years and must have a cat scan every three months to follow the cancer. It is emotional to most of us. I am not angry, but feel all have a right to their opinions.

susanh
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Re: I stand up to use the word cure(d)....

Postby susanh » Sat Jun 02, 2012 4:01 pm

Here is the 2007 article referring to a subset of Stage IV survivors as "cured":

http://jco.ascopubs.org/content/25/29/4575.full
SusanH
Dx on 7/19/2010 at 42 years old, Stage IV
Colon and Liver resection 8/11/2010, clean scan 9/27/2010
FOLFOX-6/Avastin started 9/28/2010, finished 12 cycles 3/2011
Vaccine Trial 5/2011- completed 8/2011
Clean scans 9/2010-8/2017, NED

Peloton

Re: I stand up to use the word cure(d)....

Postby Peloton » Sat Jun 02, 2012 5:04 pm

cptmac -

I have been a lurker here since August 2010 when I was diagnosed with stage 3c rectal cancer at the age of 30. I've always appreciated and looked forward to your posts. I hope you continue to participate.

I don't mean to weigh into this "cured" debate, but candidly, I'm not sure what the controversy is about. It's nothing more than a matter of semantics. If you like the word, use it. And vice versa. Regardless, learn to agree to disagree with those who have an opposing view.

vancouver eve wrote:I support stage 3 cancer people but what bothers me is that a stage 1 or2 that has never endured what the rest of us have gone through, can say they get how we feel. If someone has been a stage 1,2 and required little if any treatment, how can they understand what others who have received treatment for years are going through. Galen gets what it is like because she has been there. There are others on the site in the same situation and they know the difficulties.


I respectfully disagree. I've never shared this here because, frankly, it's never been relevant. But perhaps now is a good time. Colorectal cancer was not my first rodeo, so to speak, when it comes to cancer. When I was two (so thirty years ago now) I was diagnosed with a stage 4 rhabdomyo-sarcoma tumor on the left side of my face. Fortunately, I survived after radiation, surgery, and chemotherapy. However, I had major damage to my face (radiation back in the early 80s was not as precise as it is now) and have since undergone 20+ reconstructive surgeries to reconstruct that part of my face. While I think I look great, I still have a noticeable deformity.

In other words, I have been dealing with cancer and related medical procedures my entire life, save for the first two years. I don't know anyone else who has been diagnosed with two different primary tumors in different parts of the body by the age of 30; had to deal with a noticeable facial deformity while growing up as a result of childhood cancer; and now has to live without a rectum (and all the issues that creates).

With that said, I absolutely reject any form of stagism. We are all in this together. Whether you're stage 1 or stage 4, the fear and the human aspect of this disease are very real. I have learned an incredible amount - both here and other places - from people who have or had stage 1 cancer. On this board, I have learned a lot from Galean. But, if I correctly recall, BB was stage 2 when I first started lurking, and I have learned just as much from him before his recurrence. I've also learned a lot from weisssoccermom, who I believe is stage 1 (along with many others that are too numerous to mention).

While someone with stage 1 might not "get" exactly how I feel, there's probably not a person on this planet who would exactly "get" how I feel. However, every person I've met who had cancer understands how horrible this disease can be. Because of that, we share something unique in common and have a bond. As a result, I will give their opinions great consideration, even if I ultimately disagree.

We all come here to get support and, when possible, to offer support. Creating arbitrary divisions based what stage someone is (or was), or what particular word(s) people decide to use, is counterproductive. More important, its not healthy.

Just my 2 cents. Peace and love to all.

weisssoccermom
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Re: I stand up to use the word cure(d)....

Postby weisssoccermom » Sat Jun 02, 2012 5:20 pm

First of all Peloton, thank you for the compliment & no, technically I was a stage IIA - although my surgeon at a much later date (9 mo after dx) felt that I was 'potentially' a late stage I in reality. Neither here nor there. I don't think Eve meant anything by it.....and I do understand how she feels about it because NO, I can't understand totally what many of you are going through or have gone through. For me, it was a tad bit different as I CHOSE to go a less that 'the standard of care' route, so yes, I do understand 'somewhat' what it is like to be poked, prodded, undergo scans every 3 months, etc.

Personally, I don't think that Eve was trying to minimize what any of us have gone through. Just the initial hearing of those three words "YOU HAVE CANCER" is enough to scare the you know what out of ANYONE -a regardless of stage. I have many friends on this board.....friends who are ALL stages and no, I truly can't understand what they are going through and if anything, I am in awe of all of you that endure this constant 'what if' for so long.

This shouldn't turn into a misunderstanding about the minimization of any stage of CRC - no matter what stage....it sucks - particularly rectal cancer patients.
Just wanted to say that we can all learn from one another....learn about treatments, learn about side effects and, yes, we can 'learn' empathy from each other - just my opinion.
Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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PGLGreg
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Re: I stand up to use the word cure(d)....

Postby PGLGreg » Sat Jun 02, 2012 5:21 pm

In support of our illustrious member, though I'm but a lowly stage 2, I did change my signature -- see below.
Greg
stage 2a rectal cancer 11/05 at age 63
LAR 12/05 with adjuvant radiation+5FU,leucovorin 1-2/06
NED for 12 years, cured

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BrownBagger
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Re: I stand up to use the word cure(d)....

Postby BrownBagger » Sat Jun 02, 2012 5:52 pm

Nice see you again, Greg.

When I was originally (erroneously) dx as 2A, I tried to prepare myself for the possibility of being upgraded at some point to Stage 4, which was an interesting emotional and intellectual challenge. I won't say that I was prepared when I ultimately was officially re-staged, but at least I had some familiar ground to fall back on. It was still pretty scary and devastating, and it took some time to become 'comfortable' with my new status, but you have to get on with your life, regardless. I disagree however, with the idea that Stage 4 is somehow an unknowable experience for those who have never been there. For me, it was more a matter of shifting my expectations and thinking from "This may get me in the end" to "This will probably get me in the end." The "may" is a biggie--more of an intellectual exercise than being forced to face cold, hard reality--which is a big part of being Stage 4.

Do I hold out hope for an eventual cure? Of course. Any Stage 4 says they don't is either lying to you or to themselves. But the odds being what they are, it's more of fond hope than an expectation. I guess that's the main difference that I can see.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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Jack&KatiesMommy
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Re: I stand up to use the word cure(d)....

Postby Jack&KatiesMommy » Sat Jun 02, 2012 6:20 pm

I love you! You give us so much hope....and we need that. Thank you and please keep posting....you make such a difference in my life when things seem so bleak.
Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

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Jimswife
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Re: I stand up to use the word cure(d)....

Postby Jimswife » Sat Jun 02, 2012 6:21 pm

Good for you ... Im friends with you on fb and Anita and quite a few other stage 4rs who are now past 5 yrs ned / cured .... It can happen and it does happen , not as often as stage 1-3 but nonetheless it DOES happen x
Victoria , Wife to Jim age 43 dx oct 2011
Stage 3 cc with 2 out of 21 positive lymph nodes
Folfox starts nov 11-may 12
All scans and bloods since surgery confirm no evidence of disease
Hoping to stay ned forever .... Fingers crossed !!!!!!!

adina91
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Re: I stand up to use the word cure(d)....

Postby adina91 » Sat Jun 02, 2012 8:15 pm

I don't usually post often. I like to pop in now and then to show support and offer advice if I feel I can offer it. But, I had to tell you how much I love this post. Perfectly stated. And I think you should be able to use trepidatious till the cows come home!
Adina 42 yo, mom of 2 sons (5,9)
11/2009 - DX-2B CC-Sigmoid resect/colostomy
Lynch Synd MSH2
1/2010 - FLOX chemo
5/2010 - Subtotal colectomy/hyster/ileostomy
Stage 3A - 1/42 LN +
8/2010 - Chemo done
10/18/2010 - ileostomy takedown
2010 - 2015 - NED
5/1/15 - "suspicious" area in liver on CT
5/14/15 - follow up PET says no metastatic disease
6/19/15 - MRI - NED!

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Gaelen
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Re: I stand up to use the word cure(d)....

Postby Gaelen » Sat Jun 02, 2012 8:33 pm

SusanH, thanks for the link to that paper - it's been on my list awhile as a "where IS that?!?" Publication. Since a number of folks want to establish a "cure" timeframe, I think it's important to take a look at studies that attempt to nail it down, especially when the abstract admits that when contemplating "cure" for stage IV, there initially weren't enough survivors to count. I also thought it was interesting that 5 years was the first level of "cured" because until 2007, not enough people had hit 10 years to count.

Since lots of folks will just skip over a link without opening it, I thought it might add some perspective to this discussion to actually see the docs, institutions, different locations and countries who came to their conclusion that 10 years w/o recurrence after liver resection could safely be called "cured," while more than a third of the same types of patients recurred after 5 years. For many of us, the docs on this list are familiar names - and the starting patient pool was significant (600+).

= = =
Acual 10-Year Survival After Resection of Colorectal Liver Metastases Defines Cure
Authors: James S. Tomlinson, William R. Jarnagin, Ronald P. DeMatteo, Yuman Fong, Peter Kornprat, Mithat Gonen, Nancy Kemeny, Murray F. Brennan, Leslie H. Blumgart and Michael D'Angelica
From the Departments of Surgery, Epidemiology and Biostatistics, and Medical Oncology, Memorial Sloan-Kettering Cancer Center, New York, NY; Division of Surgical Oncology, University of California, Los Angeles, Greater Los Angeles Healthcare System, Los Angeles, CA; and Department of Surgery, Medical University of Graz, Graz, Austria

Abstract

Purpose: Resection of colorectal liver metastases (CLM) in selected patients has evolved as the standard of care during the last 20 years. In the absence of prospective randomized clinical trials, a survival benefit has been deduced relative to historical controls based on actuarial data. There is now sufficient follow-up on a significant number of patients to address the curative intent of resecting CLM.

Methods: Retrospective review of a prospectively maintained database was performed on patients who underwent resection of CLM from 1985 to 1994. Postoperative deaths were excluded. Disease-specific survival (DSS) was calculated from the time of hepatectomy using the Kaplan-Meier method.

Results: There were 612 consecutive patients identified with 10-year follow-up. Median DSS was 44 months. There were 102 actual 10-year survivors. Ninety-nine (97%) of the 102 were disease free at last follow-up. Only one patient experienced a disease-specific death after 10 years of survival. In contrast, 34% of the 5-year survivors suffered a cancer-related death. Previously identified poor prognostic factors found among the 102 actual 10-year survivors included 7% synchronous disease, 36% disease-free interval less than 12 months, 25% bilobar metastases, 50% node-positive primary, 39% more than one metastasis, and 35% tumor size more than 5 cm.

Conclusion: Patients who survive 10 years appear to be cured of their disease, whereas approximately one third of actual 5-year survivors succumb to a cancer-related death. In well-selected patients, there is at least a one in six chance (15%) of cure after hepatectomy for CLM. The presence of poor prognostic factors does not preclude the possibility of long-term survival and cure.
---

At some point I'm hoping these results will be reexamined to include patients resected after 1994...but for now, it is a starting point.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

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Ashlee H.
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Re: I stand up to use the word cure(d)....

Postby Ashlee H. » Sat Jun 02, 2012 10:28 pm

Always nice to see my liver surgeon's name on a study (Tomlinson). We were so hopeful I would be cured. I still stay in touch with him once a year to let him know how I'm doing. So far, the cancer hasn't returned to the liver, but does pop up in other places - the old Whack A Mole game! It would be interesting to see the stats after 1994. Overall, I'm doing well, so I can't complain. I know without the liver resection I wouldn't be here today.
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

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paula
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Re: I stand up to use the word cure(d)....

Postby paula » Sun Jun 03, 2012 10:31 am

Actually this report sites a 1999 study led by MSKCC's Fong finding that actuarial 5 year survival rates from liver resection alone totaled 37% and 10 year survival, 22%. No chemotherapy, just resection; the data came from 1001 patients undergoing resection only, from 1985 to 1998:

http://www.ncbi.nlm.nih.gov/pubmed/10493478?dopt=Abstract

CONCLUSION:

Resection of hepatic colorectal metastases may produce long-term survival and cure. Long-term outcome can be predicted from five criteria that are readily available for all patients considered for resection. Patients with up to two criteria can have a favorable outcome. Patients with three, four, or five criteria should be considered for experimental adjuvant trials. Studies of preoperative staging techniques or of adjuvant therapies should consider using such a score for stratification of patients


Like Gaelen I had lost the link to the abstract, so thanks Susanh.
3/08 Stage IIIa, colon resection, 12 rounds folfox
5/10 recurrence; right lobe liver metastasis
Hepatic resection 6/10; HAI pump and 6 months folfox/FUDR
Currently NED

The world is unfathomably beautiful today

chessamay
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Re: I stand up to use the word cure(d)....

Postby chessamay » Mon Jun 04, 2012 9:15 pm

Honestly I can respect anyone for using the word cured, but I would never use it.

The reason I would never use it is because I hear surgeon's say very misleading phrases to patients who are obviously very sick. They will say things like "we will get it all"-"you'll do fine"-"we'll take care of this, don't worry"........ Esp. when a woman has ovarian cancer with peritoneal carcinomatosis. Very inappropriate to say. Just better to say "we will take good care of you".

I just went to my friends memorial yesterday, all of 45 years old. She was diagnosed with adrenal cancer. 4 years ago the surgeon said he got it all and it was contained. She died on April 29th of that cancer.

I don't even say cure for my husband. When someone asks, I say he has colon cancer.
I hope it is gone, but we don't know. His cea's are up again.

We don't know wether or not he is cured we just take it day by day>
Earlier stages or late stages I personally don't think cure should be used

Catherine
Wife of husband 38yo with
St 2A CC
Laparoscopic LAR Sept.29, 2010
PET clear 1/11;
rigid sigmoid for stricture 2/11
CT clear 6/11
rigid sigmoid for "thought to be stricture" 11/11
CT clear 12/11; colonoscopy 2/12-2 polyps

Laurettas
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Re: I stand up to use the word cure(d)....

Postby Laurettas » Mon Jun 04, 2012 10:27 pm

The reason I would never use it is because I hear surgeon's say very misleading phrases to patients who are obviously very sick. They will say things like "we will get it all"-"you'll do fine"-"we'll take care of this, don't worry"........ Esp. when a woman has ovarian cancer with peritoneal carcinomatosis. Very inappropriate to say. Just better to say "we will take good care of you".

I just went to my friends memorial yesterday, all of 45 years old. She was diagnosed with adrenal cancer. 4 years ago the surgeon said he got it all and it was contained. She died on April 29th of that cancer.


I have had concerns about this as well. I worry that people who never face the fact that they are dying will neglect to do things that they would do if they accepted their mortality. Have talks with family members, especially children and spouses, not prepare their surviving family members how to function after they are gone, things like that.
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace


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