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Still unsure about ablation, Radiologist keeps changing plan

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

So I am still scheduled for the ablation of liver tumors on March 12th. Since my last post, I spoke with the Radiologist that I've been dealing with regarding this, he called after I cancelled my appointment with him for a 15 minute consultation. It was going to be between patients for him but I was sick that day and had not slept. Anyways, he said he planned to do the ablation and then Debtase? which is similar to Y90 with the radiactive beads inserted in the liver. He had never mentioned doing the debtase, or whatever it is until that day on the phone. So this is the third time he has changed the whole plan on me. I don't really get it. He says he spoke to my oncologist or they consulted via email.

This all seems strange to me, I haven't spoken to my oncologist for a while and still feel in the dark. I know that I am very scared of the radioactive beads! It can make you very sick. I do plan to try to see this radiologist to discuss this all, it is a very big deal. He says they will put me to sleep, under general anesthesia and an overnight stay in the hospital and a PCA pump. Either he is not explaining what is going to happen during and after or I am missing something.

Unless I can feel like I understand what I am getting into, I don't think I am going to go through with this. I worked in a hospital as a RN for 20 years and I don't understand why I am not seemingly included in all the plans. Is it just me and my anxiety about it all? Or does this sound normal for oncology treatment? Whatever it is I don't like it for sure.

I don't want to give up or chicken out. I definitely want to do what is best for the future. For some reason I'm afraid that after having all that done that I will be really sick for a long time or from now on. Not meaning to be negative at all, I've just seen a lot during my nursing career.

So I still cannot decide definitely to do this, it's all up in the air as far as I am concerned.

Any thoughts?

Trubrit's picture
Trubrit
Posts: 5225
Joined: Jan 2013

I am sorry to hear your story.  I also believe that the patient should be included in the discussion about treatment. At the end of the day, it is our bodies they are messing with.

I have never even heard of Debtase.  I am sure you have researched it, now that you have been told. 

I would be tempted to take one of those mini (micro) cassette recorders in to your next visit. Tell them you are recording, as I believe that is law. That way, if you miss something amongst the plethora of information, you can play it back, over and over again. 

I have done this a few times, with various appointments. 

I have had very little experience with patients who are dying, but the little experience I have had, is quite shocking. I am sure you have seen more than your share, and that would be rather frightening, knowing what the future may lay ahead. Try not to dwell on that. The future is to come. 

I wish you the best as you make this big decision. 

Tru

OzarkGal's picture
OzarkGal
Posts: 41
Joined: Oct 2017

I am supposed to get ablation on a tumor near a blood vessel toward the end of March.  There are very limited procedures they can do on tumors near blood vessels.  If the tumor is small enough, ablation is a possibility.  It can be frustrating dealing with the doctors.  I don't have a team like they do at the large cancer centers.  My oncologist is in my home town and then I have to travel out of town to meet with surgeons.  There have been times when I wished that my care was more coordinated.  This is our bodies though.  Going through this, you must stay on top of things and ask questions...Why is this changing?  What about what you said before?  etc.  It is important that we understand what is going on.

Ruthmomto4's picture
Ruthmomto4
Posts: 663
Joined: May 2013

they are consulting you when they tell you what they plan to do, but it’s always your right to say no or ask more questions. The doctors  are not going sit down and brainstorm with you in the room, they will review your case decide what they think is best and then tell you. It’s ok to ask questions, and it’s ok to say no. Unfortunately with any cancer treatment that’s going to effective and prolong your life, or cure you, there are going to times where it makes you sick or causes you pain. 

I hope that you are able to talk to your radiologist or oncologist  or even both and they are  able to answer your questions and put your mind at ease. 

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I had an ablation in the left lobe of my liver, and Y90 in the right lobe.  The procedures killed off the cancer in my liver, and I was able to have a cryoablation in a lung tumor.  I think it was worth it.  even though my oncologist wants me on some type of chemo for the rest of my life.  I got ill from Folfiri, which was what he wanted me to take basically forever, so now we  need a new plan.

I'm on a waitlist for a clinical trial of immunotherapy at MD Anderson, so am praying that will be my cure.  Many people have gone into remission or have been completely cured with immunotherapy.

I'd to the procedures again. But of course, everyone is different.  You need to do what's best for you. 

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Thanks all for the input!

Joan, so glad the procedures worked well for you, that's awesome! I'm sorry that the doc wants you to do chemo forever, that's rough. That Folfiri sounded awful. That sounds promising with the immunotherapy, that is what I was hoping to get but genetic testing showed that I am not a good candidate for that somehow unfortunately. 

Take care Joan, I wish you the best!

Karen

 

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

Thank you Karen! 

FYI: The newer immunotherapies are able to work on cancer types that they previously didn't help at all.  I am KRAS and MS stable.  The previous immunotherapy worked on cancer with Microsatetlite instability, so I wasn't eligible for those.   Of course, I'm still on the waitlist and was told December 2017 the trial wold be ready in 2 or 3 months, so will see if/when it actually becomes available.  

Good luck to you in reaching a decision about ablation and Y90.  

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