Stage 4 “no cure without surgery”

[ginabeewell]

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?

[roadrunner]

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 ), 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.”

[Rock_Robster]

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

[henny-crc]

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!

[stu]

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 !

[stu]

Ps I would slip back in and ring that bell .

[claudine]

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!

[claudine]

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.

[Gravelyguy]

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

[beach sunrise]

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.

[Nor Cal]

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.

[ginabeewell]

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?

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.

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."

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.

[ginabeewell]

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!

[Lee]

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

[stu]

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