Stage 4 for 4 years, looking for advice

Please feel free to read, share your thoughts, your stories and connect with others!
Posts: 5
Joined: Tue Feb 11, 2020 8:39 pm

Stage 4 for 4 years, looking for advice

Postby mhalpin1234 » Tue Feb 11, 2020 8:59 pm

Hello. I have lurked in these forums for years, but have never posted. I thank you for all the information shared here. It has helped me over the years, and I am grateful.

I was diagnosed with colon cancer in 2014 at the age of 38. One large tumor in sigmoid colon, removed surgically, stage 2, no treatment afterwards. CEA was 1.8 at time of surgery. Through 2015, CEA crept up to 12, ever so slowly, but nothing ever showed up on CT scans. Changed oncologists and he did a liver MRI and found 6 Liver mets in January 2016. I was told they were inoperable because of the number, and chemo was my only option. Did FOLFOX and Avastin for 15 months, tumors shrank. Took a chemo break because I just couldn't tolerate it anymore. 4 months into break, all liver mets resurged and CEA went up to 26. This time, hotshot liver surgeon wanted to try and remove the tumors, which he did, successfully. He removed half my liver (over both lobes) and CEA went back <1, NED for 2 years. Did NOT do chemo after liver resection. LIver grew back perfectly, no problems after surgery.

In January of this year, routine CT scan found lung nodule. CEA just barely moved, to 1.8. (CEA is a good marker for me. When it's moving, cancer is growing, though this tiny move within the normal range wasn't much to go on.) PET confirmed one lung nodule and no other spots. We skipped biopsy and went straight to VATS to remove nodule last week. Pathology said it's colon cancer. They got a clean margin and no lymph nodes were affected.

Now to my question: oncologist wants me to do 3 months of chemo now. I do not want to do this. Chemo was hell. I had multiple Pulmonary Embolisms during treatment and nearly died, and even without the PEs, I could barely function. I have two kids still at home, one with serious special needs that requires my full energy and attention. I feel that we should save chemo for the time that will surely come, when there are no more surgical options. It doesn't make sense to me to do a preventative chemo and risk the cancer becoming resistant. And with no tumor to measure response, how will we even know this 'just-in-case' chemo is working? I know some people wouldn't be able to live with themselves if they didn't do the post-surgery chemo, but I am not one of those people. I need good quality of life right now in order to take care of my family. My thinking is that this lung met was seeded way back in 2014 when I had the primary colon tumor, and if 15 months of chemo in 2016-17 didn't kill those cells then, why would it kill any cancer seedlings now? I'm a very good surgical candidate, being relatively young and healthy, and my surgeons have said they can keep doing liver resections and VATs on lungs until it just isn't possible anymore.

Any opinions on my situation? Anyone with knowledge of protocols at major cancer centers like MSK or MDA for my situation, with a second recurrence after a long-ish NED period? Any studies you can point me toward, so I have something to take with me to oncologist, who is really going to push for more chemo? I'd be grateful for anything you can give me. Thank you so much and God bless.

Michelle in TN
(sorry, don't know how to do a long, informative signature like everyone seems to have, but my cancer history is all here)

Posts: 473
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Stage 4 for 4 years, looking for advice

Postby Rock_Robster » Wed Feb 12, 2020 6:01 am

Hi Michelle,

Thanks for the background, and well done getting to liver surgery! Huge achievement from clearly many years of effort.

I'll give a little background on my experience, then maybe a few more general thoughts. I did neoadjuvant chemo, had a liver resection, rectal resection, then adjuvant chemo (13 cycles in total). Shortly after this another liver met was detected and resected. I asked my oncologist about further chemo and he advised that I had already had "a lot of chemotherapy", that there was "absolutely no evidence" to support benefit from further ("adjuvant adjuvant") chemotherapy, and better to save it for if needed in future. Now the difference here is that I did do adjuvant chemo after the primary tumour resection, so this is not quite apples-for-apples. I do know several people here (Australia) who had late recurrences, had another resection and were basically given the choice of further chemotherapy - it was not a foregone conclusion. My anecdotal observation is that the US tends to be more aggressive with the standard "surgery+chemo" combo, compared to Australia and Europe.

I understand the original intent of "adjuvant" treatment was to attempt to prevent future metastatic spread of disease in high risk patients, e.g. stage III. There is actually only relatively modest evidence for the benefit of adjuvant chemotherapy at all in the stage IV setting, likely due to the fact that only a minority of s.IV patients achieve NED status in the first place (and I find it hard to imagine a trial which withholds adjuvant chemo getting ethics approval). So it is already an area with fairly thin evidence, and you are now asking about a very specific situation - the value of "significantly deferred" adjuvant chemotherapy. I wouldn't be surprised if there isn't any significant research data for this at all (though always happy to be proven wrong!).

Generally, I would usually advise erring on the side of caution, following your onc's advice and doing the chemotherapy. However given the significant complications you faced last time, and your stated priority to preserve quality of life in the short term, I can understand why you are considering both options. I know this isn't anything definitive, but perhaps will trigger some debate at least.

Good luck,
Male 38; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2
11/18- FOLFOX x6
3/19- Liver resection
5/19- 25 x pelvic VMAT radiation; complete metabolic response
07/19- ULAR (robot), temp ileo, 1/27 LN
08/19- Missed a liver spot
08-11/19- FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19- Liver resection #2
02/20- Ileostomy reversed
03/20- PET & MRI = NED!

Posts: 23
Joined: Sat Aug 24, 2019 2:44 pm
Facebook Username:

Re: Stage 4 for 4 years, looking for advice

Postby galee » Wed Feb 12, 2020 8:35 am

Hi, Michelle! I do not have a lot of knowledge or first hand experience as I was just diagnosed and had LAR in September 2019. However, I have a son with severe handicaps due to a hypoxic brain injury at birth. He is totally dependent on others for his care. Your concern resonates with me. Just wanted to say I will be sending you positive prayers for discernment for your decision in regard to treatment. (We lived in TN until 2014)

47 year old, Female
8/15/2019 Colonoscopy due to blood in bowels
8/20/2019 Pathology 3cm Adenocarcinoma
Recto-Sigmoid junction, 12 cm from anal verge
BRAF, KRAS, NRAS Not Detected
CEA 1.8
9/23/2019 sigmoid & rectum colectomy plus left salpingo-oophorectomy, small intestine resection & appendectomy
9/30/2019 Pathology: T2N0M0, moderately differentiated adenocarcinoma (2.8cm), margins uninvolved

Posts: 298
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Stage 4 for 4 years, looking for advice

Postby Claudine » Wed Feb 12, 2020 9:14 am

Welcome Michelle,
My husband did adjuvant chemo - 6 rounds of Xelox - which did absolutely nothing. At the times all he had was a lumbar met (no primary) and we were told this was to mop up anything that couldn’t be seen. But he developed a large adrenal met and multiple tiny lung mets while on it, and now has permanent neuropathy in his feet.
I understand the rationale behind it, and it is a tough decision to make. Now his oncologist said that he will only resume chemo (his adrenal met was removed yesterday) if his CEA rises (like you, it is an excellent marker for him) and we’re fine with this! I know there are others who opted out of adjuvant chemo and are happy with their decision (Stu’s mom if I remember correctly). I agree with RR, chemo seems to be pushed harder in the US than in Europe or Australia.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin since 03/19
6.7 cm left adrenal mass 03/19, 3.67 cm 12/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: 2 calcified granulomas, one 1mm stable nodule

Posts: 1299
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 4 for 4 years, looking for advice

Postby stu » Wed Feb 12, 2020 10:39 am

Hi ,

My mum has never actually been offered chemo after surgery . Her lung met was years after her liver resection and was removed surgically . That was four years ago and she has not had any treatment since then .

Chemo did a fabulous job at the time but she much prefers surgery where possibly . Good scanning has kept on top of it .

You actually sound as though you have thought it through and come to your own conclusion for valid reasons .

All the very best ,
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Posts: 182
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: Stage 4 for 4 years, looking for advice

Postby debb » Wed Feb 12, 2020 8:34 pm

Hi Michelle...I am a patient at MSKCC and when a lung met showed up a few years after my original Stage 3 diagnosis, my doc did not recommend chemo after VATS. And I was good with that. I've been dealing with cancer for almost 12 years now, and I am so glad that my doc only recommends chemo at times. When I had surgery to remove a singular met, he gave me the same reasons that you stated for not having chemo (can't tell if it works if there is nothing there to measure, let's use chemo when we really need it).

I've had recurrences since then but I do not for one day regret not having chemo then. Chemo is very hard for me and quality of life is very important to me. I have four children and I needed to be an active participant in their lives. And i'm still here 12 years later...
Good luck.
Stage 3C, Dx at 42, mom of 4
Colon resection 7/08
Folfox 9/08-2/09
Met to right ovary, both ovaries removed 7/10
HIPEC 8/10
VATS 7/12, 2 nodes, right lung
10/14 3 lung nodes, Stivarga clinical trial
3/15-7/15 Folfiri & avastin for lung things
Break! One+ year of freedom
8/16 Folfiri & avastin..lung things again
Break! 10 months of freedom
1/18 rib mets, radiation, folfiri & avastin
1/19 rib mets again, radiation, folfiri & avastin

Posts: 214
Joined: Tue Aug 16, 2016 9:02 pm

Re: Stage 4 for 4 years, looking for advice

Postby WarriorSpouse » Fri Feb 14, 2020 12:18 pm

Hey Michelle,

Great question and thread for conversation. My wife has CRC lymph node metastasis and initially followed the "Cairo Study" plan after a year of Chemo and Avastin treatments. She went on Zeloda (pills) and Avastin maintenance chemo for three years, but had recurrence and needed to return to her initial treatment schedule of 5FU / Oxyplatin / Avastin.

There have been some breaks in between, but not longer than a two week cycle or a month if there was a surgery involved. You may find that Zeloda and Avastin maintenance treatments are more bearable, while achieving the same goals of long term prevention of recurrence. The oncologist once suggested stopping 5FU/Zeloda and just doing Avastin treatments once. I know everyone's medicines are different and some cancers do not respond the same to biologics like Avastin. It may be worth the conversation with a major cancer center like MD Anderson, MSK or Dana Farber. It is most helpful if your initial tumor pathology provided specific characteristics and mutation profiles. There are different drugs and biologics for different circumstances and conditions, even for maintenance protocols.

My wife has received treatment her plans from Dana Farber / Boston, but uses a local oncologist for biweekly infusions, oncology visits and scans.

All the best and good wishes.
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

Posts: 491
Joined: Fri Apr 06, 2018 11:40 am

Re: Stage 4 for 4 years, looking for advice

Postby boxhill » Sun Feb 16, 2020 10:23 am

It's my personal theory that a lot of people are walking around thinking they are NED when in fact they have things that just don't show up on CT scans. MRIs can reveal a lot--if you can get one.

Given your extremely negative reaction to chemo in the past, watch (carefully!) and wait seems pretty reasonable. Except for one thing: were your PEs likely caused by Avastin? Could you consider Folfox alone?

Do you know the genetics of your tumor? Could immunotherapy be a choice for you?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
Neulasta 6/28
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: many fails before Celebrex helps
12/23/19 CT stable

Posts: 6
Joined: Thu May 08, 2014 11:16 pm

Re: Stage 4 for 4 years, looking for advice

Postby mhalpin12 » Mon Feb 24, 2020 9:23 pm

Many thanks to all of your for the thoughtful replies. You gave me much food for thought. I appreciate the time you took to share your experiences.

I am almost completely recovered from my VATS surgery. It was, by far, the easiest cancer surgery I've had (partial colectomy, major liver resection with open incision, and then VATS for lung tumor). I saw my oncologist today and he wants me to do 3 months of either FOLFOX or Xeloda (2 weeks on, 1 week off)+oxaliplatin infusion on day 1 of each cycle. He admitted that oncologists have a bias for recommending treatment rather than watch/wait, and that there are no studies for people like me, in year 6 of CRC and and year 4 of Stage 4 CRC, with previous liver mets and liver resection, and now a solitary lung nodule. He admitted that since I have a normal CEA and no radiological evidence of disease, it's a "just in case" situation. We won't know if the chemo is doing anything or just causing harm. It stands to reason that there are microscopic cancer cells floating around, since I'm a stage 4 patient. I haven't had any chemo since before my liver resection, spring of 2017. There is no way to predict when or where the cancer will recur in the future. He said he would accept my decision to forgo treatment, if that's what I want, but he urged me to do the 3 months.

I'm very ambivalent about this decision. As I said before, chemo was hell, and I don't want it. I also feel like we should save it until I'm no longer a surgical candidate. I know I'm not going to make it out of this alive, that I will die before my two youngest are grown. But I've always held that quality of life is more important to me than quantity. I'm not here long, but for the time that I AM here, I want it to be as functional as possible. It doesn't make sense to me to do chemo to extend my life, if half of that time that I've purchased with chemo is spent completely absent from my family (that's how it is for me on chemo...I'm essentially missing from my family during chemo week, then somewhat present on the off week). This is going to be a very difficult decision for me and my husband.

I'm inclined to forgo the chemo and focus on my health in other ways, try to create an environment that is hostile to cancer growth. After my liver resection, I got serious about diet and health and trying to lower inflammation in my body. I think that had a lot to do with the long NED I had after the liver mets. In the past 6 months, I got really lazy about all of that, as some other burdens found their way to my shoulders and I stopped taking care of myself. That this lung met appeared in that 6 month time frame is no coincidence, I think. If anyone would care to chime in on that line of thinking, please do.

If anyone cares to offer an answer to what he/she would do in this situation, I'd love to hear it. I'm open to all opinions and thoughts. Thanks so much for the support. I'm very grateful.

Michelle in Tn

Posts: 6
Joined: Thu May 08, 2014 11:16 pm

Re: Stage 4 for 4 years, looking for advice

Postby mhalpin12 » Mon Feb 24, 2020 9:36 pm


We seem to have a lot in common! I was diagnosed at a young age, have 4 children, and am really trying to do what you seem to have accomplished...just keep surviving long enough to raise my kids! It gives me a lot of hope that you've survived 12 years with numerous mets. My oldest two are grown, but I still have my 13 year old and my 7 year old at home, and I homeschool both of them. My lung surgeon was saying that colon cancer has become less of a death sentence and more of a 'chronic disease' type of illness, with the help of modern treatment and surgical techniques. I really, really want to believe him, but the practical side of me doesn't want to get my hopes up. I really just want to raise my two boys and get them launched into the world before I go. Has that been your experience with your cancer, that it's more of a chronic disease type of thing? You and I have both had long disease or treatment-free intervals, which I understand is unusual. How do you feel on a day-to-day basis now, after all those years of treatment and surgeries? Any advice for me? God bless you.

Michelle in Tn

Posts: 152
Joined: Sun May 07, 2017 11:01 am

Re: Stage 4 for 4 years, looking for advice

Postby Tdubz » Tue Feb 25, 2020 3:27 pm

My situation is similar to yours. I was diagnosed at 36 and had half my colon removed and 11 rounds of folfox. A few years later they found a liver met. I had already prepared myself mentally to be ready for the chemo, but my oncologist at MDA said I didn’t need it and surgery would be fine. At a follow up visit we found a small met on my lung. I thought this time for sure I’d have to do chemo, but again he just recommended cryoablation. I think I have been fairly lucky. With regular scanning, we have caught all of my Mets when they were only a few millimeters in size, and it’s only ever been one met at a time.

Posts: 28
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: Stage 4 for 4 years, looking for advice

Postby Vana3 » Wed Feb 26, 2020 12:03 am

Hi Michelle,

I am in the first year of diagnosis and so we have done lots of research but still just on the journey. There is quite a bit of evidence to support watch and wait. I have a similar view towards everything as you do.

Would you be willing to share what you did with diet when you said you got serious about it?
Thanks in advance


Posts: 290
Joined: Thu Jul 05, 2018 6:03 pm

Re: Stage 4 for 4 years, looking for advice

Postby Gravelyguy » Wed Feb 26, 2020 12:14 pm

Great discussion Everyone,

Captain Obvious but that is one of the sucky parts of this disease. We don't know enough to have all the answers on what causes what. I still have my youngest at home and had pre and post surgery chemo. Mayo was pretty strong on the adjuvant chemo. I am NED so far and it will have been worth it if the chemo helps me stay that way.

Having said that, the extra 6 months of chemo was tough on my son and well all of us. We are just now seeing how the stress, of seeing me not be who I am during this time, has impacted him. He hides it well but is WAY more concerned about my health than he needs to be at his age.

Tough call. Whatever you decide, I am praying it will be the right one and you will not only survive for a while but thrive for a long, long time.

6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!

Posts: 1
Joined: Tue Mar 03, 2020 9:42 am
Facebook Username: Rene Wooten Roach

Re: Stage 4 for 4 years, looking for advice

Postby ReneinMd » Thu Mar 05, 2020 9:13 am

Have you discussed doing a liquid biopsy? I know it isn't perfect but since you are trying to make a big decision it might help some. If it comes back positive for ctDNA I would do the chemo. Possibly try adjusting dosages or infusion times to help lessen side effects? If it comes back negative then maybe do the watch and wait approach that you are thinking of? Just a thought. ... -detection

Btw, I need to add a signature but haven't done it yet. Quick bio: Dx at age 46 stage 4 crc with primary at junction of rectal and sigmoid. One liver met. Chemo, surgery and ablation got me to NED Dec 2016. Brain lesion found June 2018 (still wonder if met or not) but had treated with one treatment of SBRT versus waiting to see if it changed (my one regret). Recurrence found Dec 2018 in lymph nodes in retroperiteneal and iliac chain. Chemo, then trial now chemo.
6/29/16 Dx at age 46 stage 4 crc w/ liver met.
2016-2017 Chemo, surgery & ablation
NED Dec 2016
5/2018 Brain lesion (still wonder if met or not)
12/2018 Recurrence in lymph nodes in retroperiteneal and iliac chain.
1/2019-4/2019 Folfiri + Avastin Chemo
6/2019-12/6/2019 trial @ Hopkins. Erbitux & monalizumab (25% shrinkage, then stable then slight progression)
2/2020 Capox + Avastin prescreened for CEACAM5 trial at Duke. Fingers crossed

Posts: 1146
Joined: Thu Jan 03, 2013 11:44 pm

Re: Stage 4 for 4 years, looking for advice

Postby kiwiinoz » Thu Mar 05, 2020 9:48 pm

Hi Michelle,
When I was diagnosed I already had a lung lesion but I read as much as I could and came to the conclusion that there was no evidence to suggest that chemo improved the outcomes post VATS. After my LAR I got some more scans and was a suitable candidate for VATS and talked to my oncologist about the issue. He is one of the top guys in Sydney where I live and is still very active in teaching and research so I did value his opinion. He was very much "no proof that there is benefit but equally no proof that there is no benefit" and was leaving it up to me. I was of the conclusion that as a stage IV and in the 1st line of treatment that I could not live with myself if I didn't do it.
I was 39 at the time and apart from having stage IV cancer I was fit, healthy and had no other comorbidities so I did the chemo.
If I was in your position I would be really tossing it up. Chemo is tough on you and there is no proven benefit to this. I guess can you live with yourself if you don't do chemo and it again comes back? If it did, you could possibly be playing whack the mole with it for a long time so long term quality of life for you perhaps seems to be more attractive than chemo.
Good luck with your decision.
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”

Who is online

Users browsing this forum: JJH and 20 guests