I got a second opinion-need advice

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rmblack
Posts: 27
Joined: Mon Oct 13, 2014 1:47 am

I got a second opinion-need advice

Postby rmblack » Sat Aug 13, 2016 9:06 pm

A little about my situation- Was diagnosed 2014 with stage 3 CRC. Did chemo radiation and then was cancer free until this April. Spot showed up on my abdominal wall in a port scar tissue sight from my first surgery. Said this is rare. It could have been a cancer cell that was placed there when removing the surgical tool after surgery. This bumped me to being stage 4. So I had surgery and went through radiation again. My oncologist put me on Erbitux and said I would need to be on it for at least a year. It's been AWFUL. I have the rash so bad I won't leave my house. My toenails and fingernails are busting on the sides and the bottom of my feet are cracking making it difficult to walk. So this week I went to MD Anderson for a second opinion. The oncologist there told me that from looking at my scans I am cancer free. NED anywhere. He said my CEA level is 0.4 and he sees no reason I should be taking Erbitux. He said if the cancer is going to return, there is nothing I can do to prevent it. The erbitux isn't doing anything for me but making me miserable. I couldn't be more excited to get this news. The difficult part is making sure I make the right decision. I want to be done with this Erbitux more than anything. I want to go with what the doctor at MD Anderson is suggesting and I just pray that it's the best course of action for me. Now, how do I tell my oncologist here where I live that I have decided to NOT go with his treatment plan and do the Erbitux for the next year?? I feel nervous telling him this because I don't want him to think I don't trust in him after all his had done for me the past 2 years. I will still be seeing him here for my scans and any problems I have so I don't want our relationship to be awkward because he thinks I should be still be taking the Erbitux. Help!
Rhonda- 41
Wife and mom of 2 (21 and 22)
Diagnosed 9/12/14
Stage 3 Colon Cancer
Surgery 10/6/14
30 radiation treatments
6 months chemo. Oxy and xeloda
NED 7/18/15
Reoccurrence 4/2016 in abdominal wall
Surgery 4/2016
Stage 4
KRAS wild
3 months of Erbitux (May-July 2016)
20 radiation treatments
NED 8/10/16
January 2017 CLEAR SCANS!!!

Philippians 3 14

SurvivorsSpouse
Posts: 84
Joined: Sun Nov 22, 2015 12:38 pm

Re: I got a second opinion-need advice

Postby SurvivorsSpouse » Sat Aug 13, 2016 10:07 pm

First, ignore your thought of what your onc's feelings might be. He/She is not the one who will have to endure chemo, don't endure chemo just to spare his feelings.

Second, you could not have received an opinion from a more reputable or more experienced cancer center than MD Anderson.

Did Anderson perform a scan, or did they just read the scan performed by the previous Radiologist?
Did the Onc at Anderson bump you back to stage 3, saying that there was never a "spot" identified?

Lee
Posts: 5724
Joined: Sun Apr 16, 2006 4:09 pm

Re: I got a second opinion-need advice

Postby Lee » Sat Aug 13, 2016 10:22 pm

Don't worry about Onc feelings, it your life that you need to worry about. And I agree MD Anderson is one of the top hospitals for this type of cancer. If your current Onc does not understand this, may be time to find a new Onc.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

rmblack
Posts: 27
Joined: Mon Oct 13, 2014 1:47 am

Re: I got a second opinion-need advice

Postby rmblack » Sat Aug 13, 2016 10:43 pm

Yes I had a scan at MD Anderson this week and he reviewed the scans and said NED. I'm still stage 4 due to the fact that there was a cancer cell found in the abdominal wall. I know that I'm going to have to get over the uncomfortable feeling of explaining my decision to him. It's just hard because I don't want him to feel as if I don't trust him. I just have to find the nicest way to say it. I'm glad that you guys think that MD Anderson is so reputable. It makes me feel better about my decision to go with the treatment plan there. It's scary because I feel like I'm not doing anything to fight cancer. And in my mind, I feel like I should be fighting. But apparently there is nothing to fight right now!
Rhonda- 41
Wife and mom of 2 (21 and 22)
Diagnosed 9/12/14
Stage 3 Colon Cancer
Surgery 10/6/14
30 radiation treatments
6 months chemo. Oxy and xeloda
NED 7/18/15
Reoccurrence 4/2016 in abdominal wall
Surgery 4/2016
Stage 4
KRAS wild
3 months of Erbitux (May-July 2016)
20 radiation treatments
NED 8/10/16
January 2017 CLEAR SCANS!!!

Philippians 3 14

Lee
Posts: 5724
Joined: Sun Apr 16, 2006 4:09 pm

Re: I got a second opinion-need advice

Postby Lee » Sat Aug 13, 2016 10:58 pm

rmblack wrote: I know that I'm going to have to get over the uncomfortable feeling of explaining my decision to him. It's just hard because I don't want him to feel as if I don't trust him. I


You don't need to explain anything, just give the facts from MD Anderson. It's a business, they do not take it personal. When I was diagnosed, I asked both my surgeon and Onc about getting a 2nd opinion. They both responded, if there were in my shoes, yes they would get a 2nd opinion.

If your Onc does not respect the opinion from MD Anderson, again it's time to find a new Onc.

Lee

P.S. I'm sure this Onc is used to people getting 2nd opinions. People do it all the time, it's not that uncommon. It's that "knowledge is power" thing.
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

SurvivorsSpouse
Posts: 84
Joined: Sun Nov 22, 2015 12:38 pm

Re: I got a second opinion-need advice

Postby SurvivorsSpouse » Sun Aug 14, 2016 6:38 am

rmblack wrote:Yes I had a scan at MD Anderson this week and he reviewed the scans and said NED. I'm still stage 4 due to the fact that there was a cancer cell found in the abdominal wall. I know that I'm going to have to get over the uncomfortable feeling of explaining my decision to him. It's just hard because I don't want him to feel as if I don't trust him. I just have to find the nicest way to say it. I'm glad that you guys think that MD Anderson is so reputable. It makes me feel better about my decision to go with the treatment plan there. It's scary because I feel like I'm not doing anything to fight cancer. And in my mind, I feel like I should be fighting. But apparently there is nothing to fight right now!

You are doing something, you are saving your strength in case this thing comes back. Sometimes the best move is saving the bullets for when you really need them.

Good luck!!

By the way, I'll bet a bunch of the studies and articles that your Onc reads in order to keep abreast of new protocols are written by docs at MD Anderson, so I am sure he will understand.

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WriterGirl1969
Posts: 493
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: I got a second opinion-need advice

Postby WriterGirl1969 » Sun Aug 14, 2016 7:34 am

rmblack wrote:Yes I had a scan at MD Anderson this week and he reviewed the scans and said NED. I'm still stage 4 due to the fact that there was a cancer cell found in the abdominal wall. I know that I'm going to have to get over the uncomfortable feeling of explaining my decision to him. It's just hard because I don't want him to feel as if I don't trust him. I just have to find the nicest way to say it. I'm glad that you guys think that MD Anderson is so reputable. It makes me feel better about my decision to go with the treatment plan there. It's scary because I feel like I'm not doing anything to fight cancer. And in my mind, I feel like I should be fighting. But apparently there is nothing to fight right now!


First, I wonder how MD Anderson can say NED, but the Stage 4 persists, unless they removed the cell and confirmed it after your initial scan.

That being said, there are plenty of instances of people working with more than one oncologist. They have a team. Especially if one is remote. It allows the site that is remote but with better experience to participate in your care, and help guide your local doc. If your current local oncologist is anything like many of the others I've heard about and experienced myself, they prefer to adhere to conventions laid down by others... such as the docs at MD Anderson. Chances are he or she will appreciate the added guidance and not be offended by it. If he/she *is* offended, then I would agree with the others and say it's time to change your primary care to someone else, but don't go down that road unless you actually get there.

In the meantime, get the results shared, revisit with oncologist, and see what he/she has to say.

And by the way, CONGRATS on finding our you are back to NED. :)

Hugs and Prayers,
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear; 4/17/18 CT clear;
NED 2 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

michelle c
Posts: 1864
Joined: Wed Dec 02, 2009 3:58 am

Re: I got a second opinion-need advice

Postby michelle c » Sun Aug 14, 2016 8:31 am

It's great news but I can understand your dilemma. Can your onc justify why you have to be on it for a year? It does seem like a long time. I'm glad that you got a second opinion, it's so important to do this. We have to look after ourselves. Can the onc who did your second opinion write his recommendations in a report for you? You could then show it to your onc and ask for their opinion. That way you are involving them in your decision process and showing your onc that you trust their opinion. Of course, it's your decision and your onc should support and respect your decision. They should always want what's best for their patient.
Best wishes.
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

DarknessEmbraced
Posts: 3155
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: I got a second opinion-need advice

Postby DarknessEmbraced » Sun Aug 14, 2016 10:59 am

Wonderful news! :) It's good that you're going to stop treatment since it's causing such horrible side effects. I agree that it would be good if the second oncologist could write his opinion in a report that your could give to your current oncologist.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

rmblack
Posts: 27
Joined: Mon Oct 13, 2014 1:47 am

Re: I got a second opinion-need advice

Postby rmblack » Sun Aug 14, 2016 1:13 pm

Thanks everyone for your guidance on this! It's a tough situation to be in but you guys are right, I have to do what's best for me. My oncologist has always been wonderful so I am probably worrying for no reason. The onc at MD Anderson is sending his findings and suggestions to my onc here. People get second opinions all the time so this is probably something they are very used to. My onc knows how miserable I've been on the Erbitux and I've asked to come off of it and he has said I really need it. So now I have another onc telling me I don't need it. It was exactly what I wanted to hear when I went to MD. I just have to approach it in a way that doesn't say, "you were wrong".

I've been on the Erbitux for 3 months and my onc told me I was looking at being on it at least a year or more. I've been so depressed with this treatment plan. Its the reason I wanted a second opinion.

I was told once stage 4, always stage 4. The chances of reoccurrence is very high so I need scans frequently to watch for anything that pops up. My tumors have all been removed and I've done radiation on the tumor spots. The unknown is hard. No idea if and when it will come back. Just have to live day by day and pray that I'm in the small percentage that lives to be a little old lady!

My CEA level as of Friday was 0.4. The MD oncologist said that was a really low number which supports his findings of NED.
Rhonda- 41
Wife and mom of 2 (21 and 22)
Diagnosed 9/12/14
Stage 3 Colon Cancer
Surgery 10/6/14
30 radiation treatments
6 months chemo. Oxy and xeloda
NED 7/18/15
Reoccurrence 4/2016 in abdominal wall
Surgery 4/2016
Stage 4
KRAS wild
3 months of Erbitux (May-July 2016)
20 radiation treatments
NED 8/10/16
January 2017 CLEAR SCANS!!!

Philippians 3 14

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mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: I got a second opinion-need advice

Postby mypinkheaven » Sun Aug 14, 2016 1:59 pm

rmblack wrote: I just have to approach it in a way that doesn't say, "you were wrong".

I've been on the Erbitux for 3 months and my onc told me I was looking at being on it at least a year or more. I've been so depressed with this treatment plan. Its the reason I wanted a second opinion.


Of course you wanted a second opinion!!! When my 2nd oncologist (after being with #1 oncologist for 3 1/2 yrs.) saw that I was going for a 3rd opinion with another oncologist, I said that I needed all the information and input I could get in order to make decisions that I felt the most comfortable with. I was being truthful and nobody should get offended by the truth.

You've been through plenty, you need a rest!
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: I got a second opinion-need advice

Postby Pita » Sun Aug 14, 2016 3:55 pm

Glad to hear you have a good second opinion.
My Onc put me on Cetuximab/Erbitux from 2/23-3/29. I couldn't tolerate the rash and told him I refuse to have it anymore, bad enough having cancer and then having a treatment that gave me no quality of life, didn't see my grandkids for a month and the absolute worst part was not being able to sleep due to the itching and burning.
One of the main things I've learned since being a member of this site is to take control of your life and your treatment. Sure I trust my Onc but if I'm not comfortable with a decision of his and there is an alternative, that's what I'll ask for and get.
Best wishes and prayers to you rmd...
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

rmblack
Posts: 27
Joined: Mon Oct 13, 2014 1:47 am

Re: I got a second opinion-need advice

Postby rmblack » Sun Aug 14, 2016 5:38 pm

Pita wrote:Glad to hear you have a good second opinion.
My Onc put me on Cetuximab/Erbitux from 2/23-3/29. I couldn't tolerate the rash and told him I refuse to have it anymore, bad enough having cancer and then having a treatment that gave me no quality of life, didn't see my grandkids for a month and the absolute worst part was not being able to sleep due to the itching and burning.
One of the main things I've learned since being a member of this site is to take control of your life and your treatment. Sure I trust my Onc but if I'm not comfortable with a decision of his and there is an alternative, that's what I'll ask for and get.
Best wishes and prayers to you rmd...


It's hard for anyone to understand just how hard this rash is to deal with until they have had to do it. It has really effected my quality of life and I am so happy to be done with it. It's been 2 and half weeks since my last infusion and the rash is still going strong. UGH. Also I have been on steroids pretty much from the time I started it to help with the rash and I have gained SO much weight. I don't even recognize myself in the mirror.
Rhonda- 41
Wife and mom of 2 (21 and 22)
Diagnosed 9/12/14
Stage 3 Colon Cancer
Surgery 10/6/14
30 radiation treatments
6 months chemo. Oxy and xeloda
NED 7/18/15
Reoccurrence 4/2016 in abdominal wall
Surgery 4/2016
Stage 4
KRAS wild
3 months of Erbitux (May-July 2016)
20 radiation treatments
NED 8/10/16
January 2017 CLEAR SCANS!!!

Philippians 3 14


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