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Sobering discussion

impactzone's picture
impactzone
Posts: 538
Joined: Aug 2006

Interesting discussion after my consultation.
Background for those new. Stage 4 colon surgery 9/06, chemo (folfox w/ erbitux) liver resection 2/07, follow up chemo (folfox w/ avastin )until 6/07. 2 lung mets showed up in 11 / 07 and those were resected. Clean scans until 3/09 with a new lung met, resection 4/09. I have now met with the surgeon and onc at Stanford (CA) and a NCIS facility to discuss what to do next.

I realize there has been much discussion about followup chemo after stage 4 with NED and for what it is worth here is this opinion:

They want to do a CT scan in 2 months as follow up with no chemo.

Essentially, when asked about follow - up chemo which for me would or could be folfiri ( my last one left) would show no way of tracking. How long should we do this for would be an unknown as well. 3 months, 6 months, until something shows up? Basically, I was told in sobering terms that where you are right now is a watch and wait but that if something does shows up, this probably means it is systemic and you have to go to a plan that is more focused on maintenance and quality of life issues not on potential "cure" ( 5 year disease free interval). They really want to have something available if some spots show up again to either treat them, shrink them, prepare for surgery or see what happens. He said think long term chronic not "mad shot" short term. This was depressing for me as I was hoping that perhaps I was one of the very lucky ones who surgery might "cure". This second recurrance after 15 months was a setback and caused him to believe that the disease is more widespread and will show up again based only on percentages and his experiences. He gave me the "no one knows and there are always exceptions" speech but he said prepare yourself to enjoy the next two months, see what happens, but realize that you can not keep cutting parts of your lungs out, that perhaps you might have to develop a way to try to live with this as well as you can and target when to do chemo and when to do surgery.
Thanks all
Chip

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

Hi Chip: yes this a a sobbering discussion. I had the same one in Dec after the colonoscopy in 05. After the first liver re-section I thought"yehhhh this is a cure " but is wasn't and another spot apppeared on the liver in Sept. so then my onc gave me the systemic speech, and the saving drugs for "LATER"////I must say it bummed me out too. My husband was with me and when discussed it later he hadn't heard it all as such a negative as I had.

It been 4 mos since my chat but I have been on chemo and you know Chip you always get that false sort of at least I'm doing something.

On the bright side there are surviving fours here CHIP....we know that.

Give it a few days hon and let these new thoughts percolate. Maybe a completely new reality is a poosibility. Lots of us here in the boat with with you.

Sobering there;s the prob////It's friday after all, maybe a nice beer...lol

hugs, take care
mags

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Chip,

I'm so sorry you had to have 'that' conversation. It was a pivotal time when I had to shift my way of thinking of my disease from curative to chronic. Although it doesn't seem so now, it will most likely free you from the pressure of that elusive cure. Cure is the dream; the gold standard. Chronic is most often the reality for those of us stage IV.

There is certainly something to be said for keeping folfiri in the arsenal for later. Using up your options is scary at best. The studies I've seen with adjunct chemo post lung resection are ambiguous at best. There doesn't seem to be a clear consensus, so I'd say your onc certainly has a point there. It is such a tough decision, but I would probably opt for the 'wait and see' approach. Frustrating. That also puts you back to the 'whack a mole' position. (I love that expression and have stolen it from you - LOL)

Handling this crazy thing as a chronic illness isn't such a bad place to be. It isn't cure, but I'm still working for that. Will your docs still use that as the goal? My team has agreed that cure is still the goal, with maintenance (no disease progression) is my current reality. As long as they aren't giving up on MY dream, I'm ok with that. You need to decide what you can live with. What you have to deal with in your head is real, too.

Best wishes and hugs,

Kimby

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I just had this discussion with my favorite patient partner. As you know, I am one of the 'gold standard'. She coveted my 'cure' status, and said she went to the 'dark place' after being told that hers may be a chronic condition. I'll share what I said to her and take it for what it's worth....

No one knows whether 'dust bunnies' remain flowing through my system. I have had 2 lymph-involved cancers, and am, as you know, at 4 years clean on the CRC, and 3 years clean on the BC. BUT, that could change in a New York minute. I choose to live my life as if today is my last day. Not depressed (well, not often), and being thankful for each day. I know, it's harder for you, BUT take this time of no chemo to heal...it's amazing what a body can do when left to its own devices!!!! Obviously, we cancer patients have our immune system involved...that is what gets watched and guarded during chemo thru white cell counts.

So, take it for what it's worth, as she shared, at least we are all being more closely guarded, with CT's and PET's and such, than Joe Everyday...and things will be found sooner for us!!!

BIG hugs, dearheart, Kathi

shoppergal
Posts: 118
Joined: Mar 2009

I'm stage 3 cc and when I had my first pet/ct scan,which was when I first started chemo, it was to put my mind at ease. Well it did the complete opposite. Some nodes near my left kidney lit up and I was told they coouldn't be sure what it was, and it couldn't be biopsied because it was to close to my aorta.They just hoped the chemo I was on would take care of it. I was on Folfox/ oxali for 6 months, and my first scan which was 2 months after finishing chemo, was NED. Recently, about 5 wks ago I had another pet/ct scan, and once again the nodes near my kidney lit up. Again I was told that it couldn't be biopsied, so I have no idea if it's cancer or not, and there is nothing I can do but wait. In 3 months I'll have a cat scan and see if anything has changed, if not we just keep testing every 3 months. I'm trying to be positive about it, I was also told it's possible that it's scar tissue. But who knows for sure. Every once in awhile I think, if it's cancer, I don't know if it will spread to other nodes, or spread to other organs. It sucks not being able to know, and my onc told me even if we knew it was cancer they wouldn't give me chemo just now. I'm not sure if it's better knowing it's cancer and not being able to treat it, or not knowing what it is at all. Unfortunately, this whole cancer thing is partly a waiting game, never knowing if it will come back or what will change. The only thing that we can really do is try to live as normally as we can, whatever normal is! LOL Try to enjoy everything there is in life. Good luck to you Chip.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Thanks for bringing this discussion up, Chip. It is definitely a part of the reality everyone of us who has cancer has to live with, even if some of us are better than others at going into denial and putting the reality into the background.

As I was reading your post, it dawned on me that I am actually in a similar situation as yourself... the difference being, I know I have 11 nodules in my lungs, I just don't know how many of them are cancer mets and how many are scar tissue or benign cysts. If I understand your situation correctly, you had the known 2 mets removed back in 2007 and now, just recently had a single met removed that showed up 2 years later, but currently you have no mets so were hoping this is the start of being NED.

Your doctor gave you a kick in the gut by saying that the "disease is more widespread and will show up again based only on percentages and his experiences". It's the key words that put our mind into a funk... "widespread" and "percentages". It seems we (and I think we all are guilty of this) focus on a couple of negative words and build our prognosis around them, to the point we may be thinking we are in a situation that the oncologist never indicated and would be surprised to think we are thinking that way.

I find it interesting that all our oncologists, no matter where we are, seem to use the same words and same descriptions of prognosis's. There is no way every single one of us can be described in the same way... yet they all seem to use those same words. So, I think we have to just read between the lines and take our own individual experiences into account.

Once you get over that kick in the gut feeling, ask yourself how are you feeling right now? If the answer is good, then I think we can take that as the measurement of a "good quality life". If a cure is not in the immediate future, but maintaining a "good quality life" is... then are there really any complaints about how you are feeling these days and working on making sure you stay that way?

When I first heard the terms "maintenance chemo" and "maintaining a good quality life" I immediately thought that maintenance chemo means just slowing down the obvious progression towards death... and "maintaining a good quality life" meant trying to keep us feeling as little discomfort as possible while we near the end. That's what I mean about the mind playing tricks on us, or our imaginations taking us to deep, dark places.

Neither means that! Maintenance chemo means let's stop the growth of existing cancer in the body, or stop chemo cells from growing into tumours and maintaining a "remission" or "stable" state. Maintaining a good quality of life is not a short term project... it means that, other than knowing you have cancer, you don't have to feel like you have cancer. Let's keep that quality of life that we all want, to go on indefinitely.

As long as we can keep stable, we can keep living and enjoying life and then one day they will find the key to stopping cancer in it's tracks. Maybe not curing it, but stopping it from taking over. Until then, we use "maintenance chemo" or "maintenance radiation" and are thankful that we have that option.

Another thing to keep in mind to put things into perspective. EVERYONE has cancer cells in their bodies. Every single human being. For the most part, our human immune system kills off those cancer cells. So no one knows when that one or ten or thirty cancer cells are going to take root and grow. Some people will be lucky and it doesn't happen... or doesn't happen until so late in life, by then they have other life-threatening illnesses that will probably get them before the cancer would. Those of us who get cancer earlier in life because, for whatever reason, our immune systems couldn't kill off the cells, then we need "maintenance" help... which is just an assistant to our immune system to do the job our system is not able to.

So words are just that... words. Try not to dwell on what your imagination is going to stir up... but be thankful that you aren't one of the millions who dies before they ever have a chance to see a doctor because they don't have the coverage or the money to even get them to be checked out.

Huggggggggggs,

Cheryl

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

Hi Chip,
I'm possibly in a similar situation as you are. I think one thing that is very frustrating when dealing with cancer is that no one can give you straight answer to questions we all have about it. What's that spot? Am I cured? Can you cure me? how many more treatments, and the list goes on.

I've been at this basically non-stop since Feb of 2004. The breaks that I've had have mostly been chemo breaks in preparation for surgery. Once or twice I've looked where I could possibly be clear, but there have always been these suspect spots in my lungs. I did work in a print shop for over 20 years, plus I was a cigarette smoker so I never knew if the spots could have been residual stuff from "those days" or not. At any rate, both times I managed to get a 2 month break in the chemo, when I went back for a CT scan the spots had gotten bigger, not by much but any growth is not good. Luckily nothing has taken off like wildfire.

So, meanwhile I had 2 major surgeries to deal with the colon issue and my liver mets. They removed about 60% of the liver or so, then installed a hepatic pump which kept the liver clean after the surgery. That was in the Fall of 2004. Since then I've had those spots in my lungs grow. I went on Erbitux in around Spring of 05(?) and am still on it but in the Spring of 06 & 07 I had a lung operation each time. Then last summer I had my 3rd and final lung operation. They've been in there so often that there is too much scar tissue and I was told that if things started up in there, major surgery was not an option. They also told me after each operation "that we got it all out". So since last summer I went back on Erbitux for cleanup or whatever you want to call it and when I got my first post op CT scan guess what...spots in the lung(s). See spot, See Spot grow, Get the hell out of here Spot!

So for my last 2 CT scans (4 months) my scans show something but whatever it is it's stable. I had a scan last week and get my results on Monday. Last time we thought that if it is stable we may try a 2 month break. I hope I get it because the Erbitux is starting to make my scalp have those scabby pimply things on it and it hurts. At least I have a decent head of hair but it still hurts.

Now I'm (finally) getting to the part we have in common. So far the Erbitux has been effective with control/containing the cancer. I'm at a place however where surgery is not an option if it remains in my lungs. If things look stable, do I take a chance and have a break knowing that I can not have surgery if things get bad but I still have the "ace up my sleeve" which is Erbitux. I feel I need a break, I also figured out after my 1st or 2nd lung operation that I doubt that I will ever be NED. Who knows, maybe I will but the odds do not look the best. I want to have some time off so I can enjoy myself, my wife and kids, music, nature, all that is out there for me. I remember being bummed out that I likely would not be cured and that it would be chronic. Some people are not as fortunate as I have been. I've made it past 5 years and while the surgeries really sucked and chemo has been less than a treat, my overall quality of life isn't half bad at all. In some ways I've probably "lived" my life better than before I knew I had cancer. One of those crazy mixed blessing kind of things. I feel that the knock on the door that told me I won't live forever woke me up to things. Face it, we are all going to die some day, that's part of life. It may be cancer or maybe not but there's no getting out of here alive.

One other thing we all have to keep in mind, they are always developing new drugs to target cancer cells. I've been fortunate to be able to take Avastin (right after it was approved and I was part of phase II of a clinical trial for it) and also Erbitux came out and helped me too. So while we get a break with few aces up our sleeves, someone may be on the brink of developing something new that we may be able to use to stay ahead of the game and possibly (gulp) be cured.

Life's what we all make of it, sometimes it's a short one, sometimes a long one but make it a good one.

I'm sorry I babbled on a bit here but I think in some ways we share some similar situations Chip. It seems that you are in good hands with your doctors. I hope things turn out well for you (and me too). Please keep us posted.
-phil

califsue
Posts: 80
Joined: Oct 2007

Hi Chip,

You wrote:
He gave me the "no one knows and there are always exceptions" speech but he said prepare yourself to enjoy the next two months, see what happens, but realize that you can not keep cutting parts of your lungs out, that perhaps you might have to develop a way to try to live with this as well as you can and target when to do chemo and when to do surgery.

My oncologist gave me the exact same speech. The toughest thing for me to accept is to NOT do chemo after my lung met surgery. Not only does it make me feel insecure, as if the beast is getting the upper hand, but also, that now I'm dealing with a "different" disease. When I was stage III we threw the most aggressive chemo at the beast to go for the "cure". Now, that I am dealing with stage IV disease, I'm being told that chemo or surgery will be used if and when another met appears down the road. It's a different mindset and has been a difficult transition for me to make. I still have questions about treating stage IV disease and will continue to pursue a second opinion. Now, however, my expectations of a "different approach" are not as high as when I first started down this path.

I'm working on accepting the treatment plans for Stage IV disease and how to enjoy my time when I am not recovering from surgery or when I'm not on chemo. My scientific background makes it more difficult for me to let go and trust in the experience of my doctors. However, I think that the best we can do at this point is to remain extremely vigilant in the timing and reading of our scans, and doing the very best we can at boosting our immune system so that our bodies can fight off those systemic microscopic cells.

I've learned a lot from the courageous members of this board. Thank you for telling me about this site.

Together in hope,
Susan

taraHK
Posts: 1961
Joined: Aug 2003

Hi Chip,

Thanks for your post. As you may be aware, I am in a somewhat situation to you (diagnosed Stage III rectal cancer 6 years ago. I've had three recurrences in my lung -- each treated surgically with follow-up chemo).

Just for your information, I am on "maintenance chemo" (Xeloda pills) now -- indefinitely. The theory is to prolong the interval till the next recurrence -- although miracles can happen! (And I'm ready for one!).

I am certainly not trying to persuade you to go this route. And I understand and respect the views of your doc -- particularly about reserving some chemo options in case of a further recurrence (hope that won't be necessary!). It is very controversial -- my oncologist went back and forth and actually presented my case to colleagues at cancer conferences last summer. The jury was about 50:50! I would be happy to discuss the issue further with you, if you are interested. For me, I am more comfortable Doing Something than sitting and waiting for a probably recurrence. But, that's me. And the issues are certainly complex.

I wish you all the best and sending "no more recurrences" thoughts your way!

Tara

jenben59
Posts: 144
Joined: Jan 2009

I am not stage 4, but stage 3c. I've not had to experience all the surgeries and chemo changes you've gone through. However, I do think about "Will I be NED when my chemo is complete?" However,I appreciate your honest "sobering discussion". The more posts I read I'm finding that there's truly no gaurantee. Some people with stage 4 have been NED for 5 years now and other have never been NED. I will be thinking of you often and wishing you the best of everything. Do something for yourself that is deep within your heart...I'm already know what I'm going to do once this 6 months of chemo is finished in July. I don't know what is going to happen to me afterwards, but I'm hoping it does not return. Please, remember what you do for us "newbies"...you matter, your posts matter. I'm wishing you the strength to make decsions that are right for you and the courage to see it through.

dmdwins
Posts: 453
Joined: Aug 2008

Hi Chip

Short history- I was initially diagnosed in 10/07 with Stage IV with met to one ovary(unknown until final pathology so other ovary not removed at the time)6 months of Folfoox and Avastin.
Other ovary removed 11/08 because of SLIGHT uptake on Pet and my urging that I wanted it removed.It was also positive for metastatic colon. My oncologist believes that it was probably there initially just not able to detect yet. Well,I wasn't to0 glad to hear that because then it made me feel as if my chemo was ineffective.
Then came the decision about chemo or no chemo because there was NED anywhere else.
His opinion and he consulted others was no chemo since NED. I also consulted with Mayo and they agreed that they too would just wait and watch.I have to believe that they know what is best or I will drive myself crazy. My scan is coming up at the end of May. It is so very hard to just wait and watch but the chemo also takes such a toll on our bodies. I have decided to use "my chemo" while waiting which is major diet change, supplements,exercize and enjoying each day.

I Hope you are able to come to a decision that you are at peace with and would love to hear what you decide. You are in my thoughts and prayers.

Dawn

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