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worst news ever please help

Ruthmomto4's picture
Ruthmomto4
Posts: 636
Joined: May 2013

I have been watching this omentum nodule since it suddenly appeared in a ct scan in April of 2017 they said a 6mm anterior abdomen nodule is stable.  Like it’s been there but no mention of it. they don’t mention it in January of 2017. So in decrmber it says a 4mm nodule is unchanged, same thing on scan in February saying it is stable. I asked about it, they said it was nothing, but the liver surgeon wanted to look into it before he agreed to anything. 

The oncologist said in december she did not think it was a deal breaker but if it was a tumor the liver surgery would not be a cure. Honestly I don’t even care about cure anymore I just know if they don’t cut that tumor out of his liver it will grow back and he will die. He said he won’t do chemo again. 

Anyone have any experiences with one single omentum nodule? We have an appointment with the surgeon on the 22nd but I think he is going to tell us he can’t help us. My husband he would just say no through the oncologist. I am so tired of waiting and worrying.

 

****

surgeon called and said because of that nodule he won’t do the surgery, they don’t even know if it’s cancer 

so i am trying to get his records together to go to Sloan I am devasted I feel like he just got a death sentence and we were lied to 

Sloan said once they get the records 24 hr review to decide who to see and and appointment with 4-5 days 

does anyone know if a dr will resect the liver even if it’s someolace else to give him more time?

airborne72's picture
airborne72
Posts: 276
Joined: Sep 2012

Ruth:

I can't comment on the technicalities but I can comment on the emotions.  My heart aches for you and your husband.  You are in my thoughts and prayers.

Jim

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Ruth, so sorry to hear this. You and your husband have been through so much. Please don't give up hope. It's so important to treat this as yet another big ugly obstacle. There must be some options. Praying someone can help with these new developments. Never stop believing! -Beth

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I hope you get some answers that are positive and hopeful. I'm not familiar with this at all, I'm sorry. I don't know what to say other than I'm hoping for good news or another option or something that will help.

Hugs,

Jan

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I just realized that your husband was on Folfox for chemo and they had to cut the oxy towards the end. Is that the only chemo he's been on? Because it's the worst one in my opinion. The toughest to get through. I can't go on it anymore because of what it did to me. Maybe he'd be willing to try one that's less harsh? I've been on three others and none were like that, just some fatigue. If Folfox were my only option I'm not sure I'd agree to chemo, either. 

Jan

plsletitrain
Posts: 253
Joined: Jul 2017

right? So there's still a possibility that its not cancer.  And I don't know why the surgeon won't operate, probably because of the location of the tumor? I don't have any valuable input on this but all I can say is, cancer is very unpredictable.  Have faith.  The doctors may be our guide in surviving this but at the end of the day, its the patient's call.  I trust your husband knows his position, he knows his body, he knows what's best for him.  Trust him, don't let the uncertainty that the doctors tell you ever get to you.  I personally believe that the patient (myself) is the second doctor (first being God).  

 

I hope you get better answers soon.

Ruthmomto4's picture
Ruthmomto4
Posts: 636
Joined: May 2013

that the 4mm nodule is cancer. He said he didn’t think he could get to it, so he was not willing to do the resection because of it. At 4mm I doubt it would show on a pet scan it’s too small. It has not changed in a year and there is no mention of seeding or omental thickening.

Annabelle41415's picture
Annabelle41415
Posts: 6185
Joined: Feb 2009

Right now it would be very wise of you to get a second opinion like you are talking about.  Let another set of doctors evaluate his situation and see what they say.  I'm praying that all goes well and you can get him in soon.

Kim

Kazenmax's picture
Kazenmax
Posts: 350
Joined: Feb 2016

I agree with Kim. Get a second opinion.

One foot in front of the other.

K

Ruthmomto4's picture
Ruthmomto4
Posts: 636
Joined: May 2013

of my life, I am actually so stressed I am having chest pain. These doctors just don’t get how they play with your life. He isn’t a cancer patient, he is a father of 4 and a husband. They just ripped the rug out from under us and left us hanging with no answers and no options except more of that chemo. That’s not a solution and it’s unacceptable to treat people this way. His oncologist didn’t even have the decency to talk to him or tell him, she had her nurse practitioner let him think the surgeon might do the surgery. Since I knew from here and all my research chemo has to stop before surgery I knew the second she said maintence chemo she was lying. There is one thing for some readon as a human I find despicable is lying. I am still trying to figure out how chemo every two weeks is any different then what he is already doing in the first place.  He did amazing but honestly that’s not a life he wants. I am sorry to be venting, I am so sad and so incredibly scared. I feel like we had hope and a plan and now we are going to lose him. I have no idea how I will ever be able to raise our disabled son all by myself. My heart is broken.

Annabelle41415's picture
Annabelle41415
Posts: 6185
Joined: Feb 2009

Please don't give up hope.  Get that second opinion with someone outside of your network.  You need someone to go over those results and analyze the situation.  I'm with you and not liking lying.  If they are lying to you now and not being upfront with you, plus not even discussing the situation with you personally then that doesn't sound like the doctor I'd want to continue with my treatment.  Call for that second opinion ASAP.  I'd also call the doctor's office and discuss your disappointment on how they handled everything. 

Kim

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Everything that you want to achieve, might be and has been done.  A mixed sequence of treatments, say immune neoadjuvant, cut, chemo+CAM, cut, immunochemo etc is called multimodal therapy.  That's one magic phrase for what you are hunting for, to attempt to convert a normally inoperable patient to NED, or long term stable.  It mostly occurs in the hospitals of regional and national standing with more recognized drs including department heads.

Not all the important steps are in regular US medicine either.  We borrowed heavily from orthomolecular and naturopathic medicine and went some steps further.  We borrowed from Japanese medical literature to overcome US style obstacles and obstructed thinking.  We largely ditched conventionality and went with wider angle answers for immune chemo and cheap targeting. We mixed and matched answers from conventional drs and unconventional medical sources. Carefully aggressive integrative medicine has consistently paid off for us. 

We happened to deal with metastasis including the omentum first.   My wife loaded up with as much immune, molecular and off label anticancer drug as we dared, carefully, and it worked with some good localized immune responses in most or all the resected areas. 

As for surgery and chemo, it is a major problem that conventional surgeons do not have a meaningful anti-metastatic routine up to the day of surgery;  we had to arrange most of this ourselves.  Some papers do describe perioperative chemo, and it sounds like some HIPEC doctors have been willing too.  We tapered some things across my wife's final week e.g. aspirin, day by day, last IV vitamin C and oral 5FU chemo dose 24 hrs before her 2nd surgery (for para-aortic lymph nodes, not liver surgery).  So far we have dissolved, petrified or shrunk liver lesions with mild chemo and heavy duty off label adjuncts (high potency supplements and mild generic drugs).   

We use extra lab tests and mild but high potency integrative treatments to co-opt or push past regular medical answers and decisions. Much higher quality of life, actually fewer pains than the years before.

This approach is, or can be, a very hands on situation, rather than a passive subject. You have to be prepared to overcome or end run obstacles in the medical system.

Canadian Sandy's picture
Canadian Sandy
Posts: 493
Joined: Jul 2016

I’m so sorry Ruth. My heart goes out to you and your hubby. 

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Praying you will dig down deep to find a shred of strength. We just can't give up hope. There has to be an alternative, a second or third opinion! For my case I keep researching and seeing new docs as needed. I feel that God led me to my current, amazing anthroposophic MD. There are docs out there who can provide a path of hope and increased quality of life. Praying you find time to do this. Have faith. --Beth

PamRav's picture
PamRav
Posts: 246
Joined: Jan 2017

To hear that your family is going through such a stressful uncertain time. Hoping that the second opinion gives you more and better options  

Please take good care of yourself and best wishes for your husbands recovery 

pam

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