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Way worse than I thought

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I've been way too busy getting through life, getting prepared for chemo again, new port, lung puncture, thyroid troubles and appointments... life has been crazy. So I hadn't done much research about my current situation yet.

Another colon cancer patient sent me a link to a procedure that can be done for paraaortic lymph node metastisis. As I started reading the stats I realized how bad things are for me. I've been researching and have found that it is rare to have recurrance to paraortal nodes, and the survival rates and time till death are not good. Damn! These nodes are close to heart and spine - dangerous places.

I have isolated paraaortic lymph-node recurrence after the curative resection of colorectal carcinoma, known as IPLR. The rate for this happening is 1%. Does that surprise anyone? Not me.

"IPLR after curative surgery for colorectal carcinoma is rare. Although it is generally associated with poor prognosis, better survival might be achieved through curative resection in selected cases."

The median survival for those without resection is 12 months. The median with resection is 34 months. The chances of me being around to see my youngest graduate from high school are slim.

Why didn't my oncologist explain more to me? Why didn't he tell me this is so rare? He did tell me to go home and hug my kids and spend time with my family. I just didn't quite "get it." Because I know one of his patients had just one abdominal lymph node recurrance, and had it resected, and had chemo, I didn't realize my situation was so rare. I don't know the location of B's node - just that it was abdominal. I thought I was better off with it only in lymph nodes, rather than my liver or lungs. I was very wrong. This is the worst case scenerio.

I HATE CANCER!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

What about radio or RFA! they toldme both very apropiate in treating lynph nodes!
Don t get in panic so soon!

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

Oh Kathryn....are you sure ????? Call your oncologist and have him talk you through this. You know how scary and raw internet research and statistics can be. Please don't fall down the abyss.....you can do this, you can do this you can do this

((hugs))

Peggy

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

I would schedule a sit down with your Onc and tell him you have a lot of questions and need the straight truth from him. I will keep praying for you Kahtryn, something has to go right here, maybe this is it!

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Kathyrn

Alot of times, I believe the doctors do not tell us everything outright - for reasons that are their own, apparently. It took me 3 doctors to get a diagnosis on my recent condition.

My tumor was not fully excised because it is sitting right by the spine in a very bad area - thus the radiation treatments that are coming. I'm in a scary spot too, thought I can't compare mine to yours - safe to say, we are in it up to our elbows, no doubt.

You told me in a post earler today, that you would "fight as long" as you can. And I'm gonna' hold you to that one.

Maybe the docs don't tell us everything because they don't want us to "mail it in" and just give up, so they shade or color the truth, until we bring it back around to their attention.

Don't give up yet - we'll get you to the graudation!

-Craig

AnneCan
Posts: 3692
Joined: Oct 2009

I am sorry it looks worse than you thought. I hope you are wrong. I also know that whatever the odds, someone will beat them + that someone would be you; you are one strong, smart lady. I am hoping th chemo will do its job + more. Best wishes, Kathryn.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

"better survival can be achieve trhough curative resection in selected cases"" so is not the first time l hear this, in my case I had 3 small mets and one 10 cm. not very easy to be one of those ,selected cases, well, after chemo I was one of those operated successfully !
Cheer up, Amiga!

sheri22
Posts: 278
Joined: Jan 2009

Dont pay attention to the stats. We all know how wrong they are a lot of times

I know it is scary They told me I had a spot on my thorasic spine I made the mistake of looking things up and read the stats too bad idea on my part but then again if we can get cancer we can beat it too stay positive

prayers hugs and good vibes your way you can do this

Sheri22

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tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Oh, Kathryn.

I know it looks and sounds scary, and I would be completely devastated in your shoes. However, it may not be exactly like what you're reading, or you could once again be the exception to the rule. Everything for you so far has been a bit different.

Talk to your oncologist. Bring printouts of what you've been reading, and see if things are as you think they are.

*hugs*
Gail

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Abstract:
"The aim of this study was to investigate whether stereotactic
body radiotherapy (SBRT) can salvage gastric cancer patients with
para-aortic lymph node (PALN) recurrence. From January 2003 to
December 2006, 7 patients were treated for isolated PALN
recurrence from gastric cancer after curative resection. Follow
up durations ranged from 19 to 33 months (median; 26 months), and
SBRT doses from 45 Gy to 51 Gy (median 48 Gy) in 3 fractions.
Disease progression-free and overall survivals and toxicities
were recorded. Response to treatment was assessed by computed
tomography. Final patient outcomes were as follows: 2 were alive
without evidence of disease, 3 remained alive with disease, and 2
patients died of disease. Five of 7 patients showed complete
response and 2 patients partial response between 3 and 11 months
after SBRT. Three-year overall and disease progression-free
survival rates post-SBRT were 43% and 29%, respectively. No
severe complication was detected during follow-up. Selected
patients with isolated PALN recurrence can be salvaged by SBRT
without severe complications."

From: J Korean Med Sci. 2009

And that's old news.

coolvdub's picture
coolvdub
Posts: 410
Joined: Aug 2009

Kathryn,

I hope that you are wrong about only having a short time left. I agree with the others, you really need to have a face to face sit down with your Onc. It's the only way to know for sure what it is you will be dealing with. Please don't let the statistics get to you. You are one tough lady who is also smart, learn what you need to and then get ready to do what you have to.

Don

p.s. will be praying for you and your family

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Kathryn - I agree with the others. You need some straight talk from your doctor.

I was so happy to read your earlier post. I was bracing myself for news that you went into some sort of Folrori induced shock and had to be hospitalized, where, of course, you would end up with some sort of infection. But No!! Your reaction to folfori is completely normal!!

I don't know what to say about your situation. I do know that thinking about all the things we might miss - graduations, birthdays, holidays, marriages, babies and on and on - sucks. It's an emotional slippery slope that leads to doom and depression. I don't want to see you go there. Stay strong Kathryn. You're not done.

Roger

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Thanks everyone!

I am in no way giving up. I have a lot of fight in me - I exasperate my family most of the time because I am so stubborn. I was just blindsided - surprised that when I thought I was in much better shape with just a few lymph nodes involved, rather than liver or lungs, it turned out to be that this is worse.

This is rare enough that the studies I can find all have patients older than me. My main organs are all healthy and I am younger, so that gives me a better chance right there. I am going for a second (or even third) opinion. I totally agree with oncologists do chemo, surgeons cut, radiologists radiate. My oncologist is good - everyone in our area loves him and says he is one of the most aggressive. Others in the medical profession say he would be their personal choice for an oncologist if they needed one. But his "thing," what he knows best, is chemo. He says it is his job to treat me as chronic to keep me around till there is something good that will work for me. But he hasn't pushed hard to find if maybe there is something available now. Because once again, I'm in that little 1% group that not much is known about.

And with studies showing a better chance with resection (although there really isn't a lot of data), I'm leaning towards pushing hard for it. Overall I've healed very well from several surgeries in my lifetime, right on up to my colon resection. I never had bad luck with surgery until the ports - 3 strikes and you're out! But this third port should be my final one. I'll be keeping this one the rest of my life. I think I'm young enough and healthy enough to get through most any surgery that could give me a chance at cure or at least a few more years of quality life.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

As per l understand you have not spoken to your docs yet isn't ? Just what you have seen in the Internet ? Isn't? l will appreciate you clarify this point due some times my english is playing me some misunderstandings!
Cheers!

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Annabelle41415's picture
Annabelle41415
Posts: 6715
Joined: Feb 2009

You surely have had a terrible journey through all of this ordeal. Nothing seems to go your way but you always seem to deal with everything with such dignity and hope that you go through this better than last time, but sorry that you looked at stats. Don't do that as they are so outdated and you will get through this. You are a fighter.

Kim

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

But, I agree with others....you MUST get some straight talk from your doctor!!!!

I had a patient partner with positive in (I think) aortal nodes...he had it removed with great care (Had a FAB surgeon), and then did chemo...served him well...

You always amaze me at your strength and outlook on all of this battle. Give yourself some 'pity room'...you deserve it...but then go back to your 'normal' fighting like heck!!!

I am sending my biggest hugs,

Kathi

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