Post Microwave ablation

KarenMG

I've been away from the boards awhile, dealing with the after effects of this surgery. I was told at first that I was going to have the Y90 procedure or possibly the TACE which is beads either laced with chemo or radiation inserted in the liver to get rid of liver tumors. I had six tumors.

I posted previously that the doctor kept changing things on me without asking or telling me. I was diligent and still it was all changed at the last minute to the microwave ablation without discussing it with me. I don't understand why... I begged for information about the procedure and after effects but hardly got anything and what info I did get was "prettied up", cannot at the moment think of what else to call what I was told.

I digress...so 2 weeks ago today I underwent the procedure/surgery. I was put to sleep under general anesthesia on a CT table...interesting enough. So the Dr took large needles and inserted them into the sites where the tumors were, guided by the CT imaging. SIX times!!! He evidently had to go through my ribs. I don't know how deep he went but from my pain that I've had, I would say it was fairly deep. All but one of the sites was right under my right breast and one was right at my stomach. That was the only one that he was not sure that he got it all. So evidently he thinks he got most of everything that was in my liver.

Fantastic right? I am to have a MRI I think in about 2-3 weeks.

So I have had some truly incredible pain. I still have pain and it hurts to take a deep breath. He in no way shape or form expressed that I would have this kind of pain. I am not taking too many oxycodones anymore but they didn't help that much anyway. I cannot sleep or get comfortable lying down in any position. Tuesday I went in to see the Physicians assistant because he was out of town because I was in so much pain. She did a CT and said everything looked good, so that is great. She said I need to do breathing exercises because my lungs are not fully expanded, yeah I cannot take deep breaths very easily.

For sure this has been a big deal, I am cautiously optimistic about it all. It's just that I feel so wretched, have not been able to get out of this house, walk outside or go grocery shopping because of pain and shortness of breath. That doctor certainly neglected to warn me that there could possibly be this much pain and debilation. Oh well, I guess it's the way it's going to be for awhile.

I'm not meaning to sound ungrateful and negative, I guess I do. I guess I'm just afraid that whatever the status of the cancer is, I'm going to feel crappy for a long time and I didn't want to spend months recovering from this. He said that this procedure would give me possibly another 1-2 years? That's pretty vague. I cannot wait to get to speak to him again.

I AM grateful, I'm just very frustrated with this doctor. It's like I thought I was going to have my appendix out and woke up and had open heart surgery. Make sense?

 

 

 

 

 

 

 

Trubrit

Breathe!

As you know, I also had an ablation. I was also not informed of what to expect after surgery (I really should have asked. I know better than to wait for them to explain).  I only had one tumour ablated, thus, my situation will be slightly different than yours. 

I had trouble breathing, and had to work at it gradually over the weeks. 

I remember thinking that the pain lasted longer than when I had my resection; though it was a different kind of pain. 

Because I didn't have any 'big' incisions, I think that led me to believe that I would heal quicker. I was wrong! The burning of the tumours is pretty intense and while the little incisoins (I had three because they also removed my appenddix at the same time) healed quickly, the damaged liver didn't. 

Next month I will be four years post ablatoin, and I still get liver pain - I call them twinges -

There are certain movements that irritate the liver scarring and cause the twinges to become more intense, like vacuuming, shovelling, the lifting of heavy objects. 

I was SO SCARED when I realized that the pain/twinges were not going away. I thought for sure that the Cancer was back. Even now, four years out, when it hurts allot, I am scared. For me at least, I do not think that fear will ever go away, and in a way, its a good thing, because I can easily get lax with my diet and exercise, things that I believe I need to keep up on if I am going to continue to be NED.

Be good to yourself.  Remember, you can't see your liver and the damage that has been inflicted on those it. The scarring is inside and will take time to heal. 

As for your surgeon not talking to you about procedures that are happening to YOUR body, that is truly disgusting and unprofessional. 

Don't worry about whining and you are not being ungrateful. 

Also, please don't listen to his predicted amount of 'years given'. You live as long as your body wants to. It could be six months, it could be twenty years. Only the Heavens know. 

Thinking of you 

Tru.  - Sorry about any spelling mistakes. It is so hard to type with a broken wrist. 

 

Joan M

Karen, I'm sorry to hear you're having so much pain.

I had microwave ablatin in January of 2017, and terrible pain after ablation too.  It got worse over the first week, and my doctor went in on the 5th day and was able to remove some of the gases that were trapped in my abdomen.  Fortunately, the pain in that area has cleared up.  However, I started having gall bladder pain in August, 2017 and learned that my cystic duct is blocked with scar tissue and my gallbladder was damaged from the microwave ablation and the Y90 treatment.  So I've been dealing with pain from that.  Fortunatley, I am undergoing procedure called ECRP at Mayo Clinic to open the cystic duct so the gall bladder can drain.  I had one procedure on March 9th and will have a 2nd one this Thursday, March 29th.  

I hope the pain goes away soon.  It is really difficult to deal with.

Joan

KarenMG

Wow!

Yeah, I did not find out from any source that the pain would never go away. I believe it! I get it, the liver does not like to be poked. He should have told me this however. No excuse. Like you say. I WILL be speaking to him about this. It should have been my decision but to not have had it done would be a difficult decision for sure.

I forgot to mention I have those twinges too but they are sometimes super strong. After the anesthesia that they put directly into your liver wore off and those started, they took my breath away. Today I finally went out again and got in the car. I had a very strong pain that made me sort of scream, scared my son to death!

Sometimes I don't know what to think about this whole situation and if I have made the right decisions regarding all my treatments. I know that they have caused a lot of damage.

Joan, I am so sorry that you are having such troubles, geez! Like the old saying goes, if it's not one thing, it's another! I sure hope things go smoothly with your ERCP. God speed.

Thanks Trubrit for your kind response. Love you guys...

 

 

Ruthmomto4

KarenMG said:

Wow!

Yeah, I did not find out from any source that the pain would never go away. I believe it! I get it, the liver does not like to be poked. He should have told me this however. No excuse. Like you say. I WILL be speaking to him about this. It should have been my decision but to not have had it done would be a difficult decision for sure.

I forgot to mention I have those twinges too but they are sometimes super strong. After the anesthesia that they put directly into your liver wore off and those started, they took my breath away. Today I finally went out again and got in the car. I had a very strong pain that made me sort of scream, scared my son to death!

Sometimes I don't know what to think about this whole situation and if I have made the right decisions regarding all my treatments. I know that they have caused a lot of damage.

Joan, I am so sorry that you are having such troubles, geez! Like the old saying goes, if it's not one thing, it's another! I sure hope things go smoothly with your ERCP. God speed.

Thanks Trubrit for your kind response. Love you guys...

 

 

Karen

I have no experience in this but I am sorry you are in so much pain. I hope it get better soon and I am glad they were able to help you!

Phil64

I have to report that I must

I have to report that I must have an AMAZING oncologist. He always knew exacrly what was going on in my case. He didn’t mince words in describing side effects. He was always optimistic, even in downturns. And I was impressed by his knowledge. It was easy for me to trust him with my life. 

One more thing. He was not the first oncologist I saw. He was a second opinion.

I share because I think it’s important to be comfortable with your doctor. And important to trust him/her. 

Wishing you much success with the upcoming MRI. May the evidence show major progress against our common enemy. 

Happy Easter to you.

Phil

Annabelle41415

Warnings

I'm sorry that you have gone through all of that and it has to be hard.  I've never been through that so I'm not able to give you advice on what to expect but can tell you doctor's don't tell you everything you need to know.  I've learned after my treatment, surgery, and emotional stability that they never give you the actual one on one that doctor's should.  I'm wishing you well and hope that you get some answers.

Kim