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Stage III, what now?

MandiePandie's picture
MandiePandie
Posts: 84
Joined: Dec 2020

Dad just called and said they told him "T2 stage 3, it was in 1 lymph node". I don't know how many lymph nodes they took. Does it matter? I'm so shocked and scared now, we hoped so much it was stage 2. He is devastated. 

He didn't do the Nagourney (functional profile assay) testing like I begged him to, manly because the oncologist told him that he would not pay attention to the results but instead follow their own protocol. They wouldn't even order a Ca 19-9 test before his surgery because his CEA was low. 

This feels like a nightmare. 

abita's picture
abita
Posts: 1066
Joined: Dec 2017

It kind of is a nightmare, can't sugarcoat that. BUT, the anxiety is worse while you wait for the "plan". For me, the fear of the unknown is the worst. Once the oncologist gives your Father a treatment plan, he will know what he needs to do, and the "fight", should give him strength. 

I was stage 4 from my diagnosis, so I don't have any idea what his stage means. So many on this forum got through it, and are now NED. EVen though I had a recurrence, and sure the chemo makes me so tired, I am enjoying my life even though I have to get infusion every 2 weeks.

Once he gets his plan, many on here can help give tips for the various side effects. And give support. I suggest for now, make sure he talks to the nutritionist. it is good to be proactive in the nutrient department. 

Tumor markers don't work for everyone. When I was first diagnosed, they were a good indicator for me. But with the recurrence to the lung, my CEA level didn't show it. Also, insurance doesn't automatically pay for those tests. My oncologist wanted to do every chemo, but the insurance would only pay once a month, so to save me that added cost, once a month was his choice. 

It will be important if he is on chemo or whatever, that he trusts and feels comfortable with the oncologist. 

Trubrit's picture
Trubrit
Posts: 5487
Joined: Jan 2013

I HATE insurance companies. How dare they say they would only pay for chemo once a month when your Oncologist wanted it every two weeks. 

I just got notification that my insurace will pay for my next CT Scan. When I think of how much money is taken out of our pay check every month, and they get to decided wether to or not to pay for medical necessities.  They play with lives and don't give a .....

Anyway, I had to say something.  Venting, I guess. 

Tru

abita's picture
abita
Posts: 1066
Joined: Dec 2017

Not chemo, the CEA test. I meant he wanted to do a CEA test at every infusions. I actually have very good insurance as far as paying for chemo goes. I am very fortunate in that regard. I am not always completely clear after infusion.

worriedson714's picture
worriedson714
Posts: 311
Joined: Dec 2019

         My dad started out stage 3 and we ignored the nutrition department of things cause his oncologist acted like it was no big deal . Even now my dad's new oncologist acts like nutrition is no big deal and it drives me nuts I wish from the start we would have been more focused on nutrition cause I believe it makes a huge difference . Even now my dad won't lower the amount of sugar he eats cause his oncologist tells him there is no need for a special diet . That would be what I would focus on while you wait for a plan . Talk to your dad see if he is willing to eat healthy more then his normal hopefully yours will cause mine won't less the oncologist tells him to . I know stage 3 feels like the end of the world it's not the important thing is it hasn't spread to other organs . That is what I always pray for my dad is that we keep the cancer contained . 

Tueffel's picture
Tueffel
Posts: 300
Joined: Feb 2020

My dad was stage 4 and I need to say that stage 3 is still better than 4. I would have been happy if my dad was stage 3. Most studies I read were always with patient with 3. My dad would be done by now with treatment for sure. 

They do have a certain amount of lymphnodes they resect during surgery. The gastroenterologist said to us then at least 12 lymph nodes. How many they did resect you will see when you will ask for the path report. Surgeons dont know how many they resect because they are not easy to find. 

Tumor markers are not always a good indicator. Sometimes they are pretty useless. I read somewhere that there are some indications that are required but I dont remember...

I dont know what they Nagorney profile is. But I would recommend that they check for KRAS and BRAF. So you know if he can have additional monoclonal antibodies as a treatment or not. Your dad is very young. Maybe ask in his family if any other relatives had colon cancer diagnosed. It does not have to be genetic, many young people here were also diagnosed early bit no one had it in their family. But what is important: your dads age minus 10 years and in this age you will have yoir first colonoscopy. This is not to scare you but with colonoscopies they can remove lesions that might become cancer and then you wont have to worry. It is simple prevention like the vaccine against HPV. 

I dont know what they mean with their own protocoll? At home and in my university they are following the guidelines which are I believe European and nationwide. 

RudiTuesday
Posts: 15
Joined: Jan 2021

Mandie, don't let the numbers scare you, it's more important to focus on how your dad is feeling and what the treatment plan is for him. I was diagnosed in 2018 at age 51. I've been fighting for 3 years. I've also been living for three years. I've been to graduation ceremonies, weddings, baby showers, and family vacations. I have two sets of doctors, one in my hometown and another team 90 minutes away at the state University Medical Center. Some of my paperwork shows a Stage 3 diagnosis, some of it shows Stage 4 because my bladder was involved. It's the treatment plan that matters, not the number. CEA has never been a good indicator for me so my oncologist mostly ignores it. Pay attention to how your dad is feeling, that's what is important. I've been praying for you and your dad and I will continue to pray. 

SandiaBuddy's picture
SandiaBuddy
Posts: 1184
Joined: Apr 2017

Not to downplay the shock, but it sounds like what I would have called a 3a.  One lymph node is still a pretty positive result.  I was 3b, and almost four years out I am leading a relatively normal life.  There is hope.

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

I was at 3C based my surgery, but only because they did not ID the mets officially at the time.  But it was pretty clear.  There was the suspect spot in my lungs.  Plus I had 11 out of 20 lymph nodes that were cancerous.  That is a pretty high number.  

The cancer grew a ton within a couple of weeks, my surgeon was actually surprised when he did the surgery about how extensive it was compared to the scan done 12 days earlier.  \

Based on the description, it looks like what Sandia mentioned - 3A for your Dad.  

As to testing, get the tests you want.  Yale, MSK, Dana Farber etc.  do genetic testing.  In fact Yale mentioned something in my genetic testing that I had done which opens up another possible chemotherapy.  That being said, some tests and "alternatives" out there may or may not be real.  There are various places that do testing about which chemotherapy may be the most beneficial by testing cancer cells.  I am not condoning blind adherence to protocol. 

One of the most difficult things in cancer is the inordinate number of claims that something works, but it is not really accepted.  "Am I cutting off my nose despite my face and dismissing something that can save me?"  I have been dealing with that for 6 years now as I go through this. 

I am a strong believer in asking questions and we are our own best advocates.  That doctors are overwhelmed and may miss something.  Not as a conspiracy.  Not malevolent.  Just because we are all human.  So get answers that make sense.  Press the protocol question if you want.  That being said, if something sounds too good to be true, I have a tendency to be a bit suspect. take a quick look at the link below.  If your oncologist just broadly said "well protocol" that is one thing.  If they have concern that it is of no probative value, different story.  Get an answer as to why so you can feel better.  

https://www.survivornet.com/articles/an-amazing-new-cancer-treatment-what-you-need-to-ask-your-doctor-to-see-if-its-real/

AnneO1965's picture
AnneO1965
Posts: 181
Joined: May 2019

I was 3b at diagnosis and managed to go a year and a half after surgery with no problems. I did get diagnosed with cancer again, but it was a lung cancer and not a metastatic colon cancer, for which I am eternally grateful for.  Stage 3 isn't a walk through the park, but it CAN be overcome.

RobinSchwalbach
Posts: 1
Joined: Jan 2021

I had 3 out of 7 lymphnodes involved. My oncologists words were "two would have been better but three's not awful". My treatment involved chemo and radiation. Anne is right, it's no walk in the park but it isn't hopeless. My last chemo was April, 2003. Thankfully, I've had no further encounters with cancer. Prayers said for your dad and family.

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

Not all numbers on results give the true story as my CEA didn't even register.  If your dad insists for specific tests, they have to do it.  Unfortunately, he might have to pay an additional charge for a test, but once they find out that it is a good indicator some insurance picks up the cost.   It's a hard situation to be in when you are in one stage and get upgraded, but it doesn't mean that he can't be living a long normal life.  Just keep being the best daughter you can to him, and he will appreciate that more than you know.

Kim

danker
Posts: 1282
Joined: Apr 2012

I was stage 2 bordering on 3. At the time I was  77 years old. It was a bumpy year to say the least.  However. I am now 88 soon to be 89. And NED(no evedence of Disease) ever since resection.

Thus I am living proof that Cancer can be beat!!  Just hope for the best, taking it one day at a time.  Don't anticipate anything.  Best of luck to you all.

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