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Lymph Nodes Tested?

Nazareth
Posts: 88
Joined: Nov 2017

My Onc said they tested 4 lymph nodes on me when htey removed my colon- I've read that anyhtign less than 12 nodes tested puts a person into the higher risk category for recurrence because they can't be moe sure that lymph noces were invovled because too few were tested-

Does onyone have any insight on this? I was told that peopel who had fewer lymph nodes tested were 'only about 5% more likely to have reucrrence' (And htought "It may just be 5% but it's MY 5% advantage had i had enough nodes tested")

Was also told that because i had neoadjuvent chemo/radiation, then surgery, then adjuvent chemo, that the % difference is small compared to those hwo just had surgery and enough nodes tested to declare them free rom cancer-

NewHere's picture
NewHere
Posts: 1292
Joined: Feb 2015

I thought I saw other tests where 20 was being used, but this 2009 test has

12 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2684729/

Here is another discussing 12

https://www.cancer.org/cancer/colon-rectal-cancer/treating/by-stage-colon.html

Other numbers (older info) 

http://www.cancernetwork.com/gastrointestinal-cancer/number-lymph-nodes-removed-determines-colon-cancer-survival-second-analysis-int-0089

One thing to check is if margins were clean on surgery, means enough area is taken out.  There may have been a reason why only 4 nodes were tested, you should ask your doctor.  Location, visualization and scans may have played a part (in addition to what you were told)  In terms of higher risk of reoccurance, it some cases chemo may have NOT been used if no cancer was found is a lesser number of lymph nodes where more lymph nodes being involved may have revealed chemo as being a course of treatment

 

THis is one more interesting link - talks about various factors and lymph node ratio being a factor (the number of cancerous lymph nodes compared to total lymph nodes removed)

http://www.scielo.br/scielo.php?pid=S0100-69912013000600008&script=sci_arttext&tlng=en

Try not to worry too much about it - the surgery is done.  I get the 5% advantage concept, but what your doctor mentioned may be the 5% - you had the treatment that would have been recommended regardless and what was seen during surgery was an influence.  You mentioned you had chemo and radiation beforehand and did not get into detail in your condition - such as location, staging before hand, why radiation and chemo beforehand (some people have it, some others don't etc.)  May be some more information there for the decision making.

Again, try not to worry too much at this point.  

Trubrit's picture
Trubrit
Posts: 5389
Joined: Jan 2013

But have read from many here, of having less removed and tested. 

I had 21 nodes removed, one was positive, and I did have the Cancer spread to the liver. 

I would not be too concerned. I believe their is no going back in to remove more, so its a mute point. 

The threat of recurrence will be with you regardless of how many lymph nodes were tested, and how many were or were not positive. Its a fear embedded in most of us with a Cancer diagnosis. Its just a matter of learning how to handle the thoughts, and not let them run away with you and spoil life. 

Just my thoughts. 

Tru

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

I think that the fear of recurrence is real. Once you get into the treatment, you read about people with recurrences on the board and so that's naturally the next thing to worry about though not completely. There's enough to worry about with each treatment stage so you may be able to push off the recurrence stuff. My salve is to keep an eye on clinical trials and other potential solutions for my mutation should I get a recurrence. So at least there's a plan or an outline of a plan should it happen. But I think that you have to live your life and deal with the problems as they come along.

Nazareth
Posts: 88
Joined: Nov 2017

thanks folks- My cancer was rectal cancer, (Developed i nthe rectal stump that was created back when i had iliostomy for Crohn's done)- the cancer was stage 2 T-3- I know the chance of sheddign cancer sells when operated on was less because everythign was contained alread,y and tumor hadn't gone htrough the wall- so that was in my favor- perhaps that was why they decided on just 4 nodes-

Trubrit- yup that's what my onc said too- that they don't usually go back in and remove more after the surgery is cimpleted- I'm the type personality that needs to know the odds, (I tend to worry more when i don't know all the variables- as long as i know the odds, I can rest easier- I'm not oen who overly worries though- what will be will be- an that's ok by me)

Mike- yeah you;re right, My battle right now is with hte folfox treatments- gotta just face that first- then think about other htigns later

Newhere- Thank you very much for hte links- will look into those later- Yup- i need to put more trust in the docs an their decisions- it's just hard for me to not know why- but it's somethign I'll just have otl ive with

 

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

"My battle right now is with hte folfox treatments- gotta just face that first- then think about other htigns later"

I maintain a list of things that are in Phase I trials for my kind of cancer and so far, there are two things on the list should I have a recurrence. I keep such things on my homepage and add to it when something promising turns up. We are in a great time for cancer therapy discovery when new things are getting tried all the time. Yes, an even greater time would be when these drugs are developed and on the market but we're not there yet.

I was diagnosed with rectal cancer so they removed most or all of it and so 0/15 or 16 lymph nodes. But there were three that were suspicious. No way to tell whether or not they were cancerous as the Neo-Adjuvant might have killed the cancer before the surgical pathology analysis was done. So they play it on the safe side with 4FU and Oxaliplatin.

Nazareth
Posts: 88
Joined: Nov 2017

good point about beign in good times for cancer discoveries- i keep readign about treatments that target just hte cancer, and leave the rest of body alone- but that is not available just yet- should be soon- also readign abotu pain meds that are beign discovered that 'aren't addictive' and are 'just as good as opioids' so that is a big improvement if htsoe come out soon too-

Hopefully i can tolerate the folfox sessions- first one hit pretty hard- they say it gets worse as the treatment progresses- They are goign to try a newer better anti-nausea med next time- most of the symptoms I got were bearable, but soem just barely- hopefully neuropathy doesn't hit too hard- got some- but again, not too unbearable- Gonna be a battle for sure-

We'll soon see which was the worst- the chemo or the surgery- (had complicatiosn with my surgery- took a long time to heal, and had to have secodn surgery to correct the problem- that took awhile too- but is better now- have spent the better part of the year recovering from oen procedure or treatment or another- but only 4 more months to go- hopefulyl i can tolerate the folfox- I almost decided not to go with it- but at last minute decided to- just incase- ) My bet si the chemo will be worse- I hate beign nauseus-

Anyways- thanks for replying- I'll check on trials- and keep an eye on advances- We certainly have it much better and easier these days than previous generations did

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

I asked the oncologist at Dana Farber and he said that their results weren't all that good with Immunotherapy so far. It's still early and I think that they'll need more practice and research on the drugs, dosages and procedures. There are people with spectacular results from Immunotherapy but I don't know if these people are typical. BUt it's an area of great hope and that's where a lot of new focus is at.

I was on a trial for a non-opiod painkiller after surgery. I don't know whether I got the painkiller or placebo. But there are six or seven of these in trials so we should have something  on the market within a few years.

I will be where you are now soon, starting chemo. I also found that surgery was hard. I didn't have complications but I'm not used to being debilitated and surgery took more out of me than anything that I can recall. Things are a lot better after five weeks but there's still a lot of my normal life that isn't possible yet. Losing functionality is depressing as there's so much to do but the body can't, at least for now.

I know about it feeling like treatment is endless and your life (and that of your family to some degree) is on hold for a year. I hate that I'm holding others back because of what I can't do. I do hope that you can finish up your treatment and then be done with all of this stuff, at least until the more frequent tests.

Nazareth
Posts: 88
Joined: Nov 2017

[[Losing functionality is depressing as there's so much to do but the body can't, at least for now]]

Yes it is- soemthign caused me to lose strength, stamina when i was in my 30's- until then i was almost hyperactive- not sure what caused the issue- docs gave me the wastebasket 'diagnosis' of fibromyalgia, even though i don't have any tender points- i went from working 14 or so hours per day to where i couldn't work for a 1/2 hour without pain and exhaustion setting in- It was very very hard for me to coem ot the realization it wasn't going to get better- Tough pill to swallow-

Thanks for the well wishes- I'l get htrough it- i always do (Then i forget how awful it was until the next time)

 

So you didn't know i you got the placebo or not? They didn't tell you afterwards?

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

No. I think that everything is hush-hush at that level.

airborne72's picture
airborne72
Posts: 281
Joined: Sep 2012

Nazareth:

Our cases are similar, at least regarding the number of lymph nodes tested and the subsequent recommended therapy.  I was diagnosed with a large tumor in my rectum in May of this year.  The size of the tumor triggered the approval of neoadjuvant chemo (Xeloda pills) and radiation for 25 sessions, which was conducted in July/August.  On October 10th I underwent the resection surgery.  The surgeon created a temporary ileostomy because he had some doubt about the quality of my rectal tissue (damaged from radiation) so he erred on the safe side and decided to allow my rectal resection to enjoy several months of recovery.

In the meantime my oncologist recommended 12 sessions (two weeks each) of FOLFOX6.  Based upon the dynamics of my tumor and its response to neoadjuvant chemo/radiation I agonized over whether I should even do adjuvant chemo.  The chemo/radiation shrunk it down so small that it did not appear on a CT scan.  Then the surgeon reported that he could not see any evidence of the tumor in my rectum.  Had it not been for the marking tatoo's injected during my initial colonoscopy then he would not have had a clue as to where it had been.  He only removed 4 lymph nodes, which all biopsied as normal.   

So, like you, I was left wondering why and what I should do.  Not good choices.  Undergo chemo and suffer from the temporary and perhaps permanent effects or do not undergo chemo and worry the rest of my life if I had missed the opportunity to totally and permanently (as best we currently can) eradicate this cancer from my body?  I decided to think long term instead of short.  I decided to endure the short term misery of chemo therapy in exchange for the long term "relative" peace of mind.  However, I placed some terms and conditions on the procedure and my oncologist agreed.

I am 66.  Since I was in my 20's I have suffered from the chronic advance of two hand ailments - Dupytrens Contractures and Raynald's Syndrome.  Basically, both involve restricted blood flow through the fingers.  One by the physical contraction of my fingers and the other by impaired nerve/circulation function.  I have undergone three surgeries to attempt to correct the issues, but to no avail.  Because of the current conditions of my hands, I remain cautious regarding anything that might further decrease my manual dexterity.  Therefore, I told my oncologist that I would undergo adjuvant chemo and instead of doing 12 sessions I am only going to do 6 and I reserve the right to stop all treatments at any time.  The threshold, barrier, limit, condition or whatever you want to label it, that will cause me to stop treatment is my hands.  As soon as I reach the point where I feel that my manual dexterity is being degraded then I will stop.

My first adjuvant chemo session began on 15 November.  The effects from that infusion were typical - slight nausea a few days after the disconnect, slight cold sensitivity that dissipated a week after the infusion, suppressed appetite that still has not rebounded, and significant fatigue that peaked during the 5-7 days after disconnect from the infusion.  Today I am half way through my second two-week cycle and the only difference between this one and the first one is a slight increase in the intensity/strength of all of the negative effects.

Perhaps my situation (and thought process) will give you some peace of mind since we have several similarities. 

Jim

Nazareth
Posts: 88
Joined: Nov 2017

@ Airborne-

yup my tomor wasn't seen after the radiation either- so that and hte neoadjuvent chemo really hleped tremendously-

I've got the raynald's too- Do you take magnesium for it? It helps soem folks, but doesn't seem to do much for me- I can't take too much because of the D that it causes

My onc ordered an expensive anti nausea drug to try for my next treatment- callede emet- or aprepitant- she also ordered dexamethasone- which is kinda lik steroid- hoping that it will help combat the exhaustion some, and help with healing and inflamation- it looksl iek they are really tryign to make thigns as comfortable as possible- I take compazxine and zofran for hte nausea- but they didn't help much on days 1-2-3-4-5 (I get the oxiplatin one day, then 5FU in pump at home for 2 days)-

I was able to tolorate the 5FU pretty well before, and nausea didn't hit until abotu 1 1/2 weeks into the neoadjuvent chemo- but this adjuvent therapy hit me hard this time- I did get dehydrated in the neoadjuvent chemo- had to be hospitlaized- got a little bit of kidney damaege as a result- which wasn';t too bad, but it's below what htey liek it to be- Gotta stay hydrated this time

I'm gonna go for as many treatments as I can- hopefulyl i can get all 12- but we'll see- you and i started the adjuvent right aroudn the same time- Hlopefully we both can get htrough it ok- Gonna be roguh, but worth it I think-

Annabelle41415's picture
Annabelle41415
Posts: 6691
Joined: Feb 2009

Mine was rectal cancer and had the mop up chemo after.  My radiologist/oncologist told me that people with mop up chemo have a better chance of survival after.  They had clear margins on my cancer after taking out my complete rectum and then making a new one out of the existing colon.  Just to let you know, I'm here 9 years later.  It's scary starting out and I'd never thought this was possible but I've seen many grand babies born in those 9 years and have had many happy memories.  I'm not sure how many nodes was tested it's been so long.  Wishing you the best going forward, but sounds like you are on a great treatment and some good doctors following your care.  Please keep us updated.  You will be in my thoughts and prayers.

Kim

Nazareth
Posts: 88
Joined: Nov 2017

Thank You Annabelle- prayers are much appreciated- (Had numerous churches praying for me when i had the surgery- and i know it helped- )

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