So confused - Stage 2b T4aN0M0

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Kobe
Posts: 27
Joined: Wed Mar 01, 2017 10:29 am

So confused - Stage 2b T4aN0M0

Postby Kobe » Wed Mar 29, 2017 6:17 pm

I really am confused - I'm Stage 2b T4N0M0, 57 years old and otherwise healthy. Emotionally not so great - our daughter died just a year ago from cancer after 5 difficult years.

I saw three oncologists for opinions and all suggested chemo, 5-FU but were okay with doing nothing. These two thought Oxi wasn't necessary and were a little mixed on oral vs IV. They thought the side effects were sometimes worse with oral. One said they have no idea how many people are taking chemo unnecessarily. One also said that many people don't make it through all 6 months or treatment for various reasons and that there are studies questioning whether 3 months is enough.

The third doctor had one opinion FOLFOX with Oxi (maybe FOLFOX already includes that?). He said his recommendation was based on the T4. They took 45 lymph nodes and they were all negative. It was moderately differentiated and there was LVI. He said the side effects were manageable and that there were no studies that showed risk of additional cancers due to this chemo and no long tern side effects. To me those are big words and I have trouble believing them. He also wasn't a fan or oral chemo. He did suggest getting the Oncotype DX and we decided to wait for those results before making a decision.

So if you asked me yesterday I likely would have said no chemo. Today I'm just confused. I'm fully aware that my past five years clouds everything.

I have no idea how to make this decision. Any thoughts, suggestions? Anyone have experience with the Oncotype DX?

weisssoccermom
Posts: 5988
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Location: Pacific NW

Re: So confused - Stage 2b T4aN0M0

Postby weisssoccermom » Wed Mar 29, 2017 7:53 pm

IDK...for me, I would definitely DO THE CHEMO. I was a stage IIA....not negative prognostic factors and I did the chemo
Now, my onc was NOT in favor of the oxi but I insisted. Got through one round, had a very bad reaction and my onc said NO MORE of that BUT....I continued with the Xeloda.

IMO, the Xeloda is easier to tolerate than the infused 5FU. No port needed, no trips to the onc's infusion room...no repeat trips for disconnect, etc. All the studies have shown the efficacy to be just as effective so not sure why the problems. The side effects with Xeloda overall are better BUT....the hand/foot problems can be worse with Xeloda.
Many docs aren't fans of oral for a plethora of reasons. IF they believe the patient won't take the pills, have issue with taking pills, etc. then no, Xeloda is not a good choice for that patient. Keep in mind (and I am not a conspiracy theorist) that oncs make $$$ when using the infused form.....and don't when using Xeloda.....and many oncs don't recommend oral for that very reason.

You have to feel comfortable with your decision. If it were me, I would definitely do Xeloda and if my onc didn't recommend it, unless he/she had a very good reason, I would demand it. I can only speak for myself but I felt better when I was on Xeloda than when I tried to 5FU. My side effects were much less on Xeloda than on 5FU. As for the oxi....you can always try it and decide for yourself whether or not you want to continue. Keep in mind that the neuropathy from the oxi tends to last for a long time and/or is permanent and there really is no way ahead of time to know when is too much.

I don't believe that there are long term risks of other cancers from chemo so don't let that concern force your decision. You do have some negative prognostic factors...namely the T4 tumor and the LVI. With those two, if I were you, I would most definitely take some form of chemo. You have to make the decision and weigh all the factors. Do you want to try the oxi? Think about if you want a port and want to have a pump. You could always try some oxi without a port..at least for a few rounds. We have a couple of members who have done it without the port. If you do nothing and it recurs....particularly if it recurs somewhere else (lungs, liver, etc.) how will you feel about it? Will you be able to handle that particularly if you do NO chemo? You can't have regrets....you can't second guess yourself.

Take some time to think it all out. You DO have options and you have to be an advocate for yourself. This is YOUR life and YOUR decision. YOU are the one that knows best what you can handle and what you are willing to do. Find an onc who will respect your decision and work with you to get the treatment(s) that you are willing to take on.
Good luck.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

Re: So confused - Stage 2b T4aN0M0

Postby Swirdfish » Wed Mar 29, 2017 9:46 pm

I think everywhere I've read, that T4 is one associated with a high risk factor. I would do the Chemo.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: So confused - Stage 2b T4aN0M0

Postby CRguy » Wed Mar 29, 2017 11:28 pm

Kobe wrote:I really am confused -
I have no idea how to make this decision. Any thoughts, suggestions? Anyone have experience with the Oncotype DX?


Are you an Oncologist ?
If not, then at some point we all need to trust our experts .... BUTT ....
WE ARE NEVER just a number in a case file ... SO :

They took 45 lymph nodes and they were all negative. It was moderately differentiated and there was LVI.


nodes negative = GOOD
MOD differentiated = ok
LVI = heads up .. we be on the OFFENSIVE !

all this is just IMO

me ... being you = I be doing chemo = WORD !

Cheers and Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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SEWHAPPY
Posts: 86
Joined: Tue Nov 15, 2016 4:25 pm

Re: So confused - Stage 2b T4aN0M0

Postby SEWHAPPY » Wed Mar 29, 2017 11:54 pm

Welcome! I am stage 2c T4N0M0 - similar to you. I had resection surgery and am halfway through 12 rounds of FOLFOX. Not fun, but doable. My choice for chemo was based on advice from surgeon and oncologist. I am glad knowing that i have done everything possible to beat this. Feel free to ask anything!

So sorry for your loss and this current struggle. Prayers and hugs for courage! Laurie
Female age 51.
CC diagnosed 10/13/16 at first colonoscopy.
Lap colon resection 11/21/16, removed ovary & fallopian tube.
T4N0M0, stage IIC.
Lynch negative.
Power port installed 12/19/16.
12 rounds FOLFOX done 6/16/17.

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: So confused - Stage 2b T4aN0M0

Postby Beckster » Thu Mar 30, 2017 4:50 am

I am stage 2A and on Xeloda. I have LVI with a grade 3 tumor. Started with Oxi, but had a reaction on my first infusion. I am going to MD Anderson, a top cancer center. As far as the Oncotype DX, my surgeon said there is not enough research for colon cancer. It is great for breast cancer, but colon cancer is still questionable. If you decide to take chemo, I would go with Xeloda. I have been on it since Jan 2nd and have doable side effects, which will occur no matter what you take.

Good Luck
Beckster
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: So confused - Stage 2b T4aN0M0

Postby Deb m » Thu Mar 30, 2017 8:09 am

My husband was a stage IIbt4a as well. We went to MDA and they HIGHLY recommended 12 rounds of folfox. He made it thru 10 with oxi, last few without. It wasn't easy, but did pretty well over all. He was also mod, differentiated , 24 nodes removed that were all neg and also positive for LVI. It was because of the t4 status that our oncologist at MDA cancer center highly recommended folfox. He , at the time was 52 years old and very healthy otherwise. He is now 6 years NED and just has a little bit of numbness on the bottom of his feet, but nothing debilitating by any means, does everything and anything he wants to! I'm not a doctor, but from all that I've learned about colon cancer over the past 6 years in regards to risk factors, I would not think twice about doing the chemo. If the chemo gets to be to much, you can always cut back on it perhaps. Maybe you should seek a second opinion from a major cancer center if you not already at one. It may help in your decision making.

Best of luck to you,

deb

Kobe
Posts: 27
Joined: Wed Mar 01, 2017 10:29 am

Re: So confused - Stage 2b T4aN0M0

Postby Kobe » Thu Mar 30, 2017 8:56 am

My rating was T4a - I'm hoping that is enough to eliminate the Oxi. How much variance is there in the T rating?

The first two oncologists we saw (including one from Dana Faber Cancer Institute) suggested just 5FU. Neither thought FOLFOX was necessary and said at best it added a 1-2% possible improvement. To me that's not a high enough number to do it given the possible neuropathy. I run an art school so the thought of dealing with neuropathy is scary. Both of these doctors said Stage 2 is the hardest to treat because it truly is a gray area - it's the discussion stage.

The third oncologist from Smilow Cancer Center at Yale was very direct and his information was different. He wanted FOLFOX and said that Oxi increases 5FU's ability to work by about 50%. He was very set in his opinion. He felt like advanced Stage 2 was more likely to have a recurrence than Stage 3 - maybe because Stage 3 is chemo.

I could go see someone else but I don't know how much it would add. I need to do more research about the value of adding Oxi. Please feel free to share your thoughts, experiences or links to research.

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: So confused - Stage 2b T4aN0M0

Postby weisssoccermom » Thu Mar 30, 2017 9:06 am

There are negative prognostic factors which need to be(IMO) taken into consideration and the T4 staging of your tumor is one of those. I am not a doctor BUT....I don't necessarily agree that the 5FU for someone with a T4 tumor only adds 1 - 2%, nor do I agree that adding the drug improves your chances by 50%. I don't know of any study which shows ACTUAL improvement of 50% by adding oxi...regardless of the overall stage.

That being said, have you talked to your onc about your concerns regarding your livelihood and the oxi? If not, you should. I've known of a few people who, for various reasons have opted OUT of the oxi BUT have instead been given FOLFIRI/XELIRI which is 5FU + irinotecan (or Xeloda + irinotencan). There are people who have diabetes who can't take the oxi because of the neuropathy side effects and I have a friend whose job entails her to work with her hands so she talked with her onc, told him her situation and she has never taken the oxi....instead went straight to the XELIRI cocktail. It is a very viable option and adds another drug as opposed to only taking the 5FU/Xeloda. Talk to your onc about this. IF you find that he/she isn't willing to take into consideration your very real concerns, find a different onc.

You DO have options but you need to be open with your doctors and explain your situation.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Kobe
Posts: 27
Joined: Wed Mar 01, 2017 10:29 am

Re: So confused - Stage 2b T4aN0M0

Postby Kobe » Thu Mar 30, 2017 9:39 am

I did tell them all what I do for a living and my concerns about the Oxi and neuropathy. Our daughter suffered with severe neuropathy so I'm familiar with it. The Yale doctor said they would make adjustments as needed and that maybe the plan would be only 6 cycles of Oxi. That sounds reasonable but as weisssoccermom said - sometimes damage happens before you have a chance to prevent it. I'm trying to figure out if Oxi adds enough of a benefit to consider it.

FOLFIRI/XELIRI ((5FU + irinotecan or Xeloda + irinotencan) was mentioned in passing (I think that was the first oncologist) but no one gave me details or suggested it as a alternative.

I've lived in the cancer world for the past 5 years. I'm not afraid to ask questions and question everything - at this point I'm feeling overwhelmed and confused.

If FOLFOX is necessary it's frustrating to me that only one oncologist suggested it. I feel like I'm back to square one trying to figure this out.

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: So confused - Stage 2b T4aN0M0

Postby Beckster » Thu Mar 30, 2017 10:50 am

Kobe wrote:I did tell them all what I do for a living and my concerns about the Oxi and neuropathy. Our daughter suffered with severe neuropathy so I'm familiar with it. The Yale doctor said they would make adjustments as needed and that maybe the plan would be only 6 cycles of Oxi. That sounds reasonable but as weisssoccermom said - sometimes damage happens before you have a chance to prevent it. I'm trying to figure out if Oxi adds enough of a benefit to consider it.

FOLFIRI/XELIRI ((5FU + irinotecan or Xeloda + irinotencan) was mentioned in passing (I think that was the first oncologist) but no one gave me details or suggested it as a alternative.

I've lived in the cancer world for the past 5 years. I'm not afraid to ask questions and question everything - at this point I'm feeling overwhelmed and confused.

If FOLFOX is necessary it's frustrating to me that only one oncologist suggested it. I feel like I'm back to square one trying to figure this out.


MD Anderson does not use irinotecan + Xeloda for stage 2. When I could not take the oxi, my oncologist said that they normally do this for more advanced colon cancer and I would be fine with just the Xeloda. Considering one oncologist wanted to do nothing, Xeloda monotherapy sounds like a plan. My oncologist said that it is an "insurance policy." I am sure that you will make a decision that is best for you.
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: So confused - Stage 2b T4aN0M0

Postby Deb m » Thu Mar 30, 2017 2:05 pm

I have read that stage IIbt4a's have a higher risk of re-occurrence that stage IIIa t2 or t3. Most IIIa's are not a T4. Our oncologist said that A t4 , whether t4a or t4b means that there has been microscopic bowl wall perforation and cancer cells COULD of spread outside of the colon wall. He said that's sometimes more concerning than having just one or two nodes come back positive. We were told that doing folfox (with Oxi) instead of without Oxi would increase his survival chance greatly.
If you choose to do folfox, you can always drop the Oxi if it starts to cause to many problems.

I wish you the best in you decision making and your outcome.

deb

Kobe
Posts: 27
Joined: Wed Mar 01, 2017 10:29 am

Re: So confused - Stage 2b T4aN0M0

Postby Kobe » Thu Mar 30, 2017 3:29 pm

Deb m - if you don't mind sharing, where were you treated? Did you get other opinions?

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: So confused - Stage 2b T4aN0M0

Postby weisssoccermom » Thu Mar 30, 2017 4:45 pm

A stage IIIa, by definition, cannot have a T4 tumor
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Hey Daddy
Posts: 37
Joined: Wed Nov 30, 2016 8:42 am

Re: So confused - Stage 2b T4aN0M0

Postby Hey Daddy » Thu Mar 30, 2017 7:33 pm

My son was also 2b T4aN0M0 along with lymphovascular invasion, perineural invasion and grade 3 (poorly differentiated). Both oncologists that we talked to felt that FOLFOX was the best course of action. He did 12 rounds and today got the results of his first post-chemo CT scan (NED!). His experience with FOLFOX was not that bad (easy for me to say right?) aside from feeling worn out for a couple of days after each treatment and some slight but temporary neuropathy. Of course he has youth on his side. Also, for what it is worth, with the Sloan Kettering prediction tool, adjuvant chemo increases disease free survival from 46% to 57% for someone with a path report similar to my son's. Of course each case is unique but a renown cancer institution thinking adjuvant chemo might be worth 11% definitely caught my attention. Best wishes to you in whatever course you choose. --Hey Daddy
DS dx CC Stage IIB (T4N0M0) 3Aug16, 21 yr old
poorly differentiated, lymphovascular and perineural invasion
CEA 29
Colon resection 4Aug16
CEA 2.5
Genetics testing negative
6 mo FOLFOX Sep16 - Mar17
CT Scan Mar17 clear
Colonoscopy Apr17 clear
CEA 1.8
NED
Emergency appendectomy Jun17
Adhesion surgery to clear small bowel obstruction Dec 17


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