Stage 4 “no cure without surgery”

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ginabeewell
Posts: 473
Joined: Wed Oct 24, 2018 10:30 am

Stage 4 “no cure without surgery”

Postby ginabeewell » Mon Dec 21, 2020 10:56 pm

Have you heard what my oncologist calls this “dogma?”

She used the word dogma, but seems to believe it. I’ve had three stable scans after a resection that left me NED and a recurrence about 6 months after.

I went in today all celebratory about my third clean scan earning me a chemo break - “maybe forever!” - and she seemed intent on making sure I knew that the most likely thing is that the cancer will come back, because we haven’t surgically removed the new mets.

I mean, I know the odds and statistics; but by their measure I should be dead already.

This reminds me of interviewing my first 3 oncologists, none of whom seemed to believe I had any hope. I left saying to myself, “You don’t know me.” And i had that deja vu today. I know my new onc is clinically strong, but she’s not the optimist my old NW doc was. And Dr K isn’t one to give pep talks...

Not that I need pep talks from my onc.

But I feel like I should not have to give my own medical team a pep talk, either!

I was all set to ring the bell and I asked the nurse, well do I ring it if it’s just a chemo break. She said I could if I wanted. My fav nurse wasn’t there, and I felt so deflated I just left.

Ugh. I want to hang onto my optimism, but am I being naive?
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

roadrunner
Posts: 90
Joined: Sun Jan 12, 2020 8:46 pm

Re: Stage 4 “no cure without surgery”

Postby roadrunner » Tue Dec 22, 2020 12:03 am

First let me say that you’ve been one of the people on this site who’ve inspired me in my own cancer fight with your courage, vitality, fight, and yes — your ability to beat tall odds. I should’ve thanked you before, but I will now. Thank you.

Now to your question. I have faced only Stage 3 disease thus far, so you may wish to take my comment with a grain of salt. I am, however, a voracious reader and reasonably able analyst (in my own opinion, of course :D), and I had occasion to look at the literature on disappearing liver mets post-chemo (“DLMs”) some time ago. My recollection is that there are many factors that go into evaluating the likelihood of recurrence (imaging modalities used, age, numbers of mets, treatment, time passed since disappearance, any visualization of sites in surgery, HAI therapy (a+), etc.) but overall there is a not insubstantial chance of a durable clinical response or complete pathological response for DLMs. I’m not close to being able to throw out a number even for all DLMs (regardless of individual circumstances), and that wouldn’t likely be useful anyhow, but the chance of remaining cancer-free is variable but not insubstantial from what I reviewed.

Obviously, if you’re the type who wants to ballpark the risk optimally, you’d have to dive deep into that info with your doctors, considering all relevant information. And certainly I would advise having all relevant information considered by open-minded, expert doctors (and by you!) before making material treatment or life decisions. But that’s pretty much always true.

That said, are you being naive? If I understand your situation right (and you have DLMs), and from my study of the literature, my answer would be “no.”
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

Rock_Robster
Posts: 529
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Stage 4 “no cure without surgery”

Postby Rock_Robster » Tue Dec 22, 2020 2:47 am

Hi Gina,

My $0.02, for what it is...

I always say, the best and worst part about cancer is that anything is possible.

Statistically speaking there are two ‘reliable’ pathways to a durable NED - (1) a ‘radical resection’ (ie complete surgical removal of all macroscopic disease), or (2) a systemic immune response to an immunological therapy (eg Keytruda, in the case of some MSI tumours).

However, there have certainly been numerous case reports of people who achieve/maintain NED with chemotherapy alone. And there is no reason why you couldn’t also be one of them. Doctors are taught to think probabilistically and communicate based on averages. To the doctor - is it *likely* that they are sitting opposite a complete chemo response? No. But to you - is it *possible* that you will have one? Of course.

Finally - whether you do or you don’t is ultimately out of your hands, to a large degree. But I know I’m a much happier person if I have hope, and preferably hope
that is backed up by data! I like my onc’s approach - “it’s good news until it isn’t. And there’s no reason to prematurely believe that it won’t be”.

Best of luck
Rob
38M Australia
10/2018 Dx RC, 12cm high
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, May-20=1.9, Jun-20=2.1, Sep-20: 2.1, Dec-20: 2.3
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (CT/PET/MRI) - latest Dec 2020
07/20 Clear scope

henny-crc
Posts: 11
Joined: Mon Sep 14, 2020 6:09 pm

Re: Stage 4 “no cure without surgery”

Postby henny-crc » Tue Dec 22, 2020 7:59 am

If there is no cancer noted on scans, it is possible. Not a common thing for sure, but i seen some similiar case studies about NEDs after chemo.
And its not like your cancer journey is a common one. Like you said, according to numbers on google, you should be already dead, but you are still alive and well in real life.
And even if things go bad, and mets return, you can probably still do the second surgery, right? So i dont really see a thing to be sad about.
Merry christmas, and wishing you a happy NED year!
Dx 06/20
23 yo
Stage 3A
T1N2a

stu
Posts: 1429
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 4 “no cure without surgery”

Postby stu » Tue Dec 22, 2020 9:13 am

To be honest I really don’t know but what I do know is my mum had years before she recurred in her lung . Diagnosed 2009 and it was around 2015 when it popped up . Her immune system must have been holding the micro-disease in check . How that occurred is a mystery to me but her thoracic surgeon insisted it was all part of the cells thrown out at the time of the original spread . Given her primary was removed in 2010 I agree .
My point is something was holding it in check ! Then it arrived but not before years of excellence living and it’s that part that matters ! Who knows what will be in the pipeline by then . I say that sincerely as I have watched that pipeline deliver over the last ten years .
So to enter into a period of no visible disease with a healthy attitude to living a good life is all anyone really has .
Enjoy today !
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 .

stu
Posts: 1429
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 4 “no cure without surgery”

Postby stu » Tue Dec 22, 2020 9:14 am

Ps I would slip back in and ring that bell .
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 .

Claudine
Posts: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Stage 4 “no cure without surgery”

Postby Claudine » Tue Dec 22, 2020 10:18 am

Stu’s right - find a bell and ring it!!

I find it very interesting how different oncs have different perspectives. I guess they’re humans and their own personalities probably influence how they communicate with their patients (along with their experience, of course). My husband’s onc appears to be an optimist, as in, “sure, CEA values are high and that is worrisome, but there’s no progression on the scan, so enjoy life and worry about things later, if/when something pops up”.

If I were you I’d treat myself to a splendid present this holiday season (not necessarily expensive, but something special!). You’ve earned it!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report

Claudine
Posts: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Stage 4 “no cure without surgery”

Postby Claudine » Tue Dec 22, 2020 10:43 am

Another thing that Stu also mentioned: there’s so much research going on right now, I wouldn’t be surprised if new treatments were available in the coming years, that would revolutionize CRC cancer treatment, like the discovery of immunotherapy for MSI folks.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report

Gravelyguy
Posts: 348
Joined: Thu Jul 05, 2018 6:03 pm

Re: Stage 4 “no cure without surgery”

Postby Gravelyguy » Tue Dec 22, 2020 12:41 pm

Hi Gina,

Different but maybe helpful. When I had my liver surgery. They took out where they thought one of the tumors was 3 times. They couldn’t find it. The liver surgeon put in his notes that he could not rule out a complete response to chemo.

You and I were both on the dreaded Vectabix. I really think that does a number on some peoples liver Mets. I think you and I are two of those people.

And go back and ring that bell long and loud!

Dave
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 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!

User avatar
beach sunrise
Posts: 354
Joined: Thu Mar 05, 2020 7:14 pm

Re: Stage 4 “no cure without surgery”

Postby beach sunrise » Tue Dec 22, 2020 1:04 pm

I am so proud of you! You have worked so hard to get to NED! Congrats!!!
Keep you immune system high and inflammation low during this time is my opinion.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug. Adding Everolimus soon.
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Nor Cal
Posts: 7
Joined: Sun Dec 06, 2020 8:18 pm

Re: Stage 4 “no cure without surgery”

Postby Nor Cal » Tue Dec 22, 2020 1:46 pm

To take the non-statistical approach, it sounds like you've had a good attitude and willingness to fight, which I truly believe can be a difference maker. One thing my onc told me is "everyone deserves an optimistic oncologist" but if you don't have one sometimes it may be best to just tune them out the same way we all need to tune out all the stuff we read on the internet about our prognosis. The most important part isn't their bedside manner, but whether you trust him/her to be good at their job.
Dx June 2020, stage IV, w liver mets. M, age 50. Left lobe near complete takeover by tumor. Multiple mets on right side. Right-sided colon tumor. BRAF mutation. CEA 39.5
7-11/20 8 cycles FOLFOXIRI (plus Avastin cycles 2-6)
CEA 2.9
12/20 radioembolization (right lobe)
12/20 1 cycle FOLFOXIRI
1/21 chemoembolization (left lobe)

User avatar
ginabeewell
Posts: 473
Joined: Wed Oct 24, 2018 10:30 am

Re: Stage 4 “no cure without surgery”

Postby ginabeewell » Tue Dec 22, 2020 3:26 pm

roadrunner wrote:That said, are you being naive? If I understand your situation right (and you have DLMs), and from my study of the literature, my answer would be “no.”


Thank you - I posted my question just before i went to meditate and do a distance reiki healing session. The meditation i did encouraged me to put out into the universe what I wanted, and when i considered what that was, one of the answers was, "I want to be able to trust my own instinct again."

And then I read your response, and literally laughed out loud at how on the nose your answer was - not JUST encouraging "hey girl, you can do it," but data-based, pragmatic analysis to support my desired belief.


My husband and I chatted, and he pointed out that the medical community has been wrong before:
1) They thought i would survive "one or two years" - they were wrong, and I was right
2) They felt good post-resection, and made a decision to not do mop-up chemo as a result; i felt in my gut like cancer was not done yet - they were wrong, and i was right
3) Now, they feel bad (ok fine realistic) and i feel good - why would i not trust my own instinct which has been righter than the medical community twice now already?


Rock_Robster wrote:Hi Gina,
But I know I’m a much happier person if I have hope, and preferably hope
that is backed up by data! I like my onc’s approach - “it’s good news until it isn’t. And there’s no reason to prematurely believe that it won’t be”.


Yes, me too - which is why I was so angry that it felt like my onc crushed my hope. As I was texting a cancer buddy (who also happens to be a therapist), she said something like, I understand what's behind the anger. Fear? I asked immediately, and knew it was true. I felt as angry as I was, because her reaction made me feel scared. Somehow knowing that made me feel better - I can better control my fear than my fate.

I quite like your onc's approach and may need to adopt that as a mantra.

henny-crc wrote:And even if things go bad, and mets return, you can probably still do the second surgery, right? So i dont really see a thing to be sad about.


That's true, and it is what made us feel OK about requesting the chemo break originally. Thanks for reminding myself this. Right now, they don't want to operate, both because the mets are not conveniently located, and because there is "nothing there."

stu wrote:Ps I would slip back in and ring that bell .


Stu, your mom's story is one I fall back on again and again, in part because i think it could be healthier / more productive for me to believe that there is still cancer in my system, and i need to support my immune system so that it can keep the disease in check. That's ultimately what i feel confident about. I read the book Law of Attraction, which talks about looking for "proof" in the world that what you want to happen can happen; and as i read the pages and thought about it, i was struck by what's become another mantra: You Are Your Own Best Proof.

My body has responded to my call again and again. I am proof that i can perform better than anyone expects.

I need to return in 3 weeks to get my pump flushed. If my favorite nurse is there, i will ring that bell.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

User avatar
ginabeewell
Posts: 473
Joined: Wed Oct 24, 2018 10:30 am

Re: Stage 4 “no cure without surgery”

Postby ginabeewell » Tue Dec 22, 2020 3:37 pm

Claudine wrote:Stu’s right - find a bell and ring it!!

I find it very interesting how different oncs have different perspectives. I guess they’re humans and their own personalities probably influence how they communicate with their patients (along with their experience, of course). My husband’s onc appears to be an optimist, as in, “sure, CEA values are high and that is worrisome, but there’s no progression on the scan, so enjoy life and worry about things later, if/when something pops up”.

If I were you I’d treat myself to a splendid present this holiday season (not necessarily expensive, but something special!). You’ve earned it!


I meant to comment on this, too. One of the pieces of literature I have read through my journey talked about ego - and how we adopt particular outlooks in part so we can satisfy our ego. So a doctor may play the odds or even play down the potential for success - because playing it up leaves too much chance for failure, bad for the ego. EVEN THOUGH research supports that outcomes are better when patients have hope. Some surgeons refuse to operate on patients who believe they will die on the table for this reason. Just sort of interesting to understand why some medical professionals may not be encouraging.

I like the idea of a present! I told my husband when we are through with this, I want to create a necklace with teeny diamonds that look like stars sprinkled at the base of my throat - stars having been my healing symbol. Maybe we should do sooner vs later!
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

Lee
Posts: 6200
Joined: Sun Apr 16, 2006 4:09 pm

Re: Stage 4 “no cure without surgery”

Postby Lee » Tue Dec 22, 2020 5:25 pm

So sorry you are going through this. The roller coaster ups & down are really tough sometimes.

When I was first diagnosed, I read of a few people who had a recurrence, most did have surgery, butt one person got to NED through chemo.

Stay positive,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

stu
Posts: 1429
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 4 “no cure without surgery”

Postby stu » Wed Dec 23, 2020 4:39 am

Hi ,
I shared this once on here about ten years ago and it created a big debate about my mum being in denial and needing a reality check .CRGuy had to come to my rescue back then ( different user name ) It was a bit of a shock for me at the time as I felt she was awash with reality checks . As soon as you walk through the front door of the cancer hospital for the first time is a check for sure . She also happens to be intelligent and I know what she would have said if someone else was in her position . I think she would have thought back then they would not have survived.
She has a faith so her defining line was oncologist treat but they can’t possibly predict the outcome or the time line so she never once asked for a prognosis.
The next part caused the debate . She has never once thought about cancer growing in her body . She embraced fully the oncologist care and treatment but never actually believed it was her time !

I know that sounds really odd . But that is just how it was . It defied all science , common sense and to be honest had me in a knot ! I was frantically trying to prepare a funeral that she would not participate in . I remember standing in the local shopping centre with tears steaming down my face as I felt she had left me with the reality of the situation!

To further put that into context it has not transferred to corona . She is terrified of it and practically in hiding . At one point making my dad wear a mask around the house . We had to temper that .
She also has a really odd reaction to scans . She totally embraces them as a lifeline . A safety net and feels secure when they are carried out regularly. She likes a wee coffee and cake after them . She also totally embraces surgery . She feels chemo is a necessary evil but is thankful it did a good job . Only this week did I even realise the significance of right side ascending location on chemo effectiveness and prognosis. She was against it there too but we had no idea . Not only did she respond but it cleared big tumours off the screen !
Only now do we understand fully why the oncologist sat shaking his head saying he does not get to see this too often .

So I gave up trying to apply the stats to her and slowly over a couple of years thought she was in a better place than I was and why on Earth was I wanting to drag her into my thought process .

She met many medics who continually tried to kindly inform her of her demise. But her GP always felt we should be open to seeing how she responds .

I have absolutely no idea why she was up against so many odds yet held onto life . Nor do I wish a debate on it . ( just saying I hate them ) . But I am comfortable in accepting this was how it levelled out and my firm belief is that some people go on to life a good life despite a difficult diagnosis and that gives me great hope ! So when new people join the forum with a difficult diagnosis I think in my head . They may do very well with treatment . We have to wait and see how that works out .
People spoke about the pipeline back in 2009 and saw it as a platitude. You know “ I don’t fancy your chances type but something might just pop out of there “ . But in the last five years it has been delivering options that has changed outcomes for some people .
Sadly not all people survive but as 2020 draws to a close I am still hopeful and open to developments in the world of Bowel cancer .
With that I will go and do my shopping!
Stu ( actually his mum he was 21 yesterday ) he was 9 when granny started this journey . Chemo on his birthday ! Up to our knees in snow .
Xx
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 .


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