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post surgery chemo-yes or no??

traci43's picture
traci43
Posts: 427
Joined: Jul 2007

Hi all - I've been battling colon cancer for over 5 years now, had my first surgery in 2005 to remove tumors which had metastized to my ovaries and omentum followed by 12 rounds of FOLFOX. After a year, some tumors showed up in a bit of omentum that was not removed originally and I had HIPEC surgery to remove them along with 14 rounds of FOLFOX, 8 before and 6 after HIPEC. Then a year later, I had a tumor show up near my rectum and the surgical oncologist would not do surgery due to lymph node involvement. 18 rounds of XELIRI, everything was gone on CT scan but CEA was 2.5. The tumor eventually grew back and I've had 6 rounds of XELIRI while waiting to see the surgeon. I could not believe him when he agreed to surgery and I just has surgery 2 weeks ago to remove it.

The big question is to do follow-up chemo or just relax. The surgeon believes that this is an old tumor, like maybe 5 years old, which gives me a better prognosis. The surgeon is the chief of the surgical oncology department and really conservative, so the fact that he is pleased with my prognosis is good. It does appear that my body is fighting new tumors, but traditionally they like to do chemo after, just in case. I've had 50 rounds of chemo in the last 5 years and am leaning towards wait and see, but am scared that I'll regret it if it comes back. My medical oncologist thinks we could just wait and see and is leaving the decision up to me. Any thoughts?

thxmiker's picture
thxmiker
Posts: 1213
Joined: Oct 2010

Trust your instincts!

I am going the through the similar debate. I have surgery Thursday and the Onc wants me to do Chemo again immediately. I am undecided. I will wait until after the surgery to decide.

I will also trust my instincts.

Best Always, mike

PS Sending thoughts and Prayers for you to have a speedy recovery!

sdp's picture
sdp
Posts: 142
Joined: Jan 2012

Hi,

What surgery is planned for you ? What is the chemo proposed?

Maybe you should also see the TNM classification of the tumor removed and pathology results before you take a call
Not to do follow up chemo.

traci43's picture
traci43
Posts: 427
Joined: Jul 2007

Mike - thanks! The first couple of times it was a no brainer--do the chemo, but then the cancer kept returning. It gets harder, knowing past history. I hate to go through chemo for nothing for fear the side effects will stop me using it if I do need it in the future.

Wishing you the best for your surgery and recovery. let me know how it goes. Traci

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

good luck with your surgery! praying for you
hugs
judy

thxmiker's picture
thxmiker
Posts: 1213
Joined: Oct 2010

I will let everyone know Friday what has happened. I know I have Signet Ring Cell back at the surgical site. I have 3 mets in my chest and one has been biopsied negative. They will biopsy the other two and diagnose before I get closed up and decide to continue surgery.

I have a possible met in my left hip. The Surgeon said he will feel, then possibly biopsy the cyst or tumor. If it is a tumor. I will have a second surgery in a couple days to go after the Hip met.

After the surgery and the Surgeon's input and the Oncologists input, we (My wife and I) will decide to do Chemo or no Chemo. FolFox put me in the hospital twice for 12 days in total in the hospital. It is a difficult choice. This is also the third occurrence. I have started alt therapies with diet and supplements. I figure battle Cancer on several battle fronts, just stay consistent to let something work or not work.

Best Always, mike

PS At least it is expected to be cooling down in Phoenix by Thursday.

tanstaafl's picture
tanstaafl
Posts: 956
Joined: Oct 2010

Have you thought about stepped options from outside a limited national pharm that might avoid a hard binary choice, like all or nothing? The Japanese have done prodrug 5FU daily, with cimetidine and PSK for a year (III) or more (IV/recur).

Stepped options for us were, largely accumulating combinations of: cimetidine and part of the Life Extension recommendations, IV vitamin C with oral K vitamins, oral 5FU prodrug, PSK (a la Japan), and then Wellmune WGP. The nice things about these were: improved wound healing, reduced sepsis, reduced inflammation, target seeking, improved blood values, much improved QoL including no chemo sick days, and the ability to reverse a CEA jump (temporarily unavailable ingredient) with titrated treatments. We do not do surgery without cimetidine.

traci43's picture
traci43
Posts: 427
Joined: Jul 2007

Interesting thoughts. I've been trying to evaluate the many supplements I've tried and which to continue and which could be let go. I do like how the IV vitamin C helps me through chemo but the cost, yikes! I'm going to have to look into these a bit more. Don't see my medical onc for a couple of weeks so I have time to decide. Thanks!

tanstaafl's picture
tanstaafl
Posts: 956
Joined: Oct 2010

The cost of IV vitamin C drops greatly if you work the supply and administration issues for the long term. A friendly nurse nearby could do the infusions on a schedule. Also getting supplies in bulk is important. Hardcore, some of the ex-military types have learned to plug themselves in for infusions. In terms of conventional care, even retail is far cheaper than most chemo etc, although perhaps not covered by insurance.

I daresay if 5FU were economically displaced by oral tegafur (FDA fubar on UFT) and xeloda, the oncologists would be a lot less obstructive about (IV) vitamin C.

steved
Posts: 836
Joined: Apr 2004

Am similarly considering the value of chemo post surgery for recurrence. Once you are down the track of several ops and chemo courses you are off the standard protocols and so there is no evidence base in studies to tell you what value chemo may have. Hence it is a call for the patient to balance the down sides of chemo against an unknown amount of value. The real value I see is what you have voiced- at least feeling you have done everything you could to fight it and not leaving room for regrets down the path.

I think I will do it mainly on the basis that it is a small hassle compared to all the operations I have had and if the cancer comes back I won't have those 'what if' regrets.

It's a hard one that only you can weigh up.

Steve

traci43's picture
traci43
Posts: 427
Joined: Jul 2007

Steve - It's that "what if" stuff that really messes with you. So far I've kept away from it. It's a tough decision. If I do XELIRI, at least it's manageable the side effects and my QOL is pretty darn good. Thanks for your thoughts on this.

John23
Posts: 1832
Joined: Jan 2007

Re:
"I've had 50 rounds of chemo in the last 5 years and am leaning
towards wait and see, but am scared that I'll regret it if it comes back.
"

You pretty much said it all, didn't you?

5 years, 50 rounds, with no regrets after each recurrence,
and you're doing it again......only now, for some reason, you're
frightened about it...

Maybe it's time to check out the alternatives? Just for "ha-ha's"?

My hopes are with you, whatever your choice.

John

traci43's picture
traci43
Posts: 427
Joined: Jul 2007

John - I know. I've tried lots of supplementation, diet changes, meditation, etc. It's hard making that decision to go totally that way. I'm seriously considering it though. Not sure I want to subject my body to more drugs when it's not certain there's any cancer there.

Chelsea71
Posts: 1170
Joined: Sep 2012

Big decision! If it were me I'd lean towards wait & see. Especially if this is what your onc is suggesting. QOL is an important factor to consider but it's also wise to consider your future need for chemo and the overall toll it takes on your body. It's great that your cancer has responded so well to chemo. You've had a rough 5 hrs. My husband had hipec too. Unfortunately, his first 3mos. scan after hipec showed a recurrence. Anyways, there is an argument to be made for either option. I'm glad your surgery went well.

Good luck,

Chelsea

PhillieG's picture
PhillieG
Posts: 4666
Joined: May 2005

Given the pattern that you seem to be in, the cancer likes to come back.
I'd do the treatments again if it were me. It seems to be working.
You could also try something different that may or may not work
then you might not have to make the decision again...

It's always a crap shoot IMO
-phil

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

If I were in your position and knew what i know now, I would be on a plane to germany for the most advanced therapies available. I would not sit aruond and grow another little met! i would super charge my immune system, but its a huge financial and personal commitment and the results are not guaranteed.

hugs,
Pete

traci43's picture
traci43
Posts: 427
Joined: Jul 2007

Pete - You are always at the forefront and I read your posts with interest about the alternative treatments. Unfortunately, flying to Germany is out of the question for me. But I will do what I can at home to get the best outcome possible.
Thanks! Traci

janderson1964's picture
janderson1964
Posts: 1562
Joined: Oct 2011

You are very similar to me. I have done 4 surgeries over 7 years withe chemo after each time. My medical oncologist left it up to me this last time as well.

traci43's picture
traci43
Posts: 427
Joined: Jul 2007

Hope you are doing well, 7 years is great! I aspire to that and everyone else that's hanging in there with 5+ years. Thanks.

Lovekitties's picture
Lovekitties
Posts: 2926
Joined: Jan 2010

There are obviously no guarantees regardless of which option you choose.

For me the deciding factor would be what is the time line for "wait and see"...that is how often and what tools would be used to monitor me. If I felt comfortable with what is proposed, I would choose this option and save further chemo for if/when something shows up.

As you have experienced, doing chemo does not mean there won't be a recurrance. But if you feel that doing it gives you better "odds" then do it.

At this point I see this more as an emotional decision rather than a medical one. Unfortunately, we just can't tell the future about will/won't cancer return, no matter what we do.

Wishing you best outcome no matter what you choose, and no regrets about that decision.

Hugs,

Marie who loves kitties

traci43's picture
traci43
Posts: 427
Joined: Jul 2007

Marie - My onc is really good and will monitor me as often as I want- monthly, every other month, quarterly for CEA, 4-6 months for CT/PET scan. It's really up to me and how often I want to go in. In the beginning I wanted CEA tests monthly, but over time I've gone to every other month or even quarterly as I don't want the stress of another test. I do CT/PET scans every 6 months.

the more I think about it, the more I'm leaning towards wait and see. Thanks Marie.

danker
Posts: 735
Joined: Apr 2012

I had chemo and radiation before tumor surgery. Onc wanted chemo after resection, surgeon said not necessary since no lymph nodes involved. Thus no more chemo. One year colonoscopy showed NED. It's now 18 months since colonoscopy (30 since resection) and probably still NED. Due to see onc next month. Just trust your doctor. Good Luck

traci43's picture
traci43
Posts: 427
Joined: Jul 2007

I do trust my onc, she's great! hated my first onc and so very glad I switched! I am leaning towards wait and see. Just a difficult decision, thanks for the input.

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

Did you get clear margins, Traci?

If you didn't...there's your answer.

If you did, then it's six one way - half a dozen the other.

When the response to chemo stops, we never know...holding onto it and keeping that gun in your holster is never a bad decision...because it leaves you a decision.

Always the hardest question on the board...because, it's one of the hardest questions on the board.

And we always take the easy way out when talking to folks about this one, because that eases the potential for guilt that we would have to live with by suggesting a course of action that might not go the way that any of us suggested...and we would feel terrible if what was said was not right.

You're smart though...you've already answered your own question...I would say the percentages would lay with the opinion of your oncologist...you then base that information on what you feel on the inside...and roll the dice.

I wish we all knew what was the absolute right way to go...but the truth is, that many of us don't even know that for ourselves.

Our response to cancer and treatments are all so individual, that's it hard to know which way to lean.

Watching and waiting is not the worst strategy either...

I've tried it like this...surgery got clear did the chemo and rad...recurred
surgery got clear did the chemo...recurred
surgery bad margins did the chemo and rads...watching and waiting.

Good luck with your decision. Congrats on the 5!

-Craig

traci43's picture
traci43
Posts: 427
Joined: Jul 2007

Craig - Yes I got clear margins, makes me feel better. I'm more worried about something they might have missed. Seems like they miss something in my peritoneum every time. But then even with post-surgery chemo it comes back. I agree it's 6 of 1, half dozen of the other situation. Might be nice for a change to try wait and see. Seriously considering it.

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