Ablation, Cementopathy, and Scans

[Judy M.]

Okay guys I'm finally going to try to update. Have been putting it off because I know it will be long and wanted final results on the procedure. Ablation/Cementopathy was not a good experience. At the last moment after I'd been prepped and was being wheeled into procedure room was told a different doctor whom I'd never heard of was going to do it because the doctor I knew wasn't there. This was after having waited 3 weeks to have it done. I wasn't pleased and said so which may not have been the smartest thing I've ever done. It was done under what's called conscious sedation. Told two drugs were used for this. I was in pain during the procedure and in horrible pain after the procedure. Having read the possible ways this can be done I think it was the choices the Interventional Radiologist made that caused this. He ordered a shot of morphine for me after. This didn't seem to help the pain at all but did  cause me nausea and vomiting for the next 12 hours to go with it. I was released immediately afterward with no pain meds. My husband said doc ask me if I wanted a prescription for pain and I replied, "Well, if morphine hasn't helped I don't know what you could possibly give me." I don't remember that, but sounds like me. I can be sarcastic at times. So home I went with no pain meds. Called him the next day to ask if this level of pain was normal and would get better. He replied that he didn't know because they only do one or two of these procedures a year and he'd only done one this year. Still no offer to try to help with it. On my couch for a week then on a walker for a few more weeks. Now using a walker and a cane though I can limp around without them. Pain is under control thanks to my medical Oncologist. Just had C. T. scans and got results yesterday. The tumor on my hip bone that still showed after radiation is now gone. So, though it certainly didn't help my pain or ability to walk the procedure appears to have knocked out that tumor. Mixed results on other tumors. Radiologist sees progression. Medical Oncologist says maybe/maybe  not because the appearance of what he saw in my lungs is round rather than the ugly spider shape of cancer. He believes what he's seeing is scar tissue from the SBRT rather than progression. So he decided to continue Opdivo and schedule PET and bone scans to further investigate. He's talking of possibly Opdivo combined with a other immunotherapy drug if there has been progression. But he's leaving, so now I'm going to be changing Oncologists in midstream. Don't know what the next one will think. I don't think my experience with the oblation is typical and dreaded sharing it. I know no one else who has had this so have nothing to compare it to. I do know he had a choice of burning or freezing the tumor to kill it and freezing the tumor is not painful. He chose to burn it. I also know that various forms of aneasthetic are used and that patients are generally kept 24 hours because of pain and I was sent home. All this sounds terribly negative I know and I don't feel that way at all. I continue to pray for the doctor who did the procedure and have forgiven him. I'm glad that tumor at least is gone. And I feel fairly optimistic about scan results. I know there aren't many out there with bone mets and haven't heard of any who had an ablation, but I'd love to hear from you if you've been hiding. I now wonder because of some other things I've learned if the pain and disability in my leg could be some form of inflammatory arthritis  caused by the Opdivo. Oncologist says that's a possibility he's considered and has referred me to a Palliative Care doctor. This is so long! If you made it all the way through would love to hear your thoughts. 

Judy M. 

[Tom Galli]

Judy,

My thoughts, no post from a survivor on this forum is ever too long.  I'll read every word and so will most others.  This is the distinguishing characteristic of this forum and from say social media.  Everyone's opinion counts and everything survivors or caregivers experience is relevant.

No I don't know much about ablation but what I read when you first mentioned the procedure.  The bait and switch surgeons is a strike against medical professionalism.  We pay for these procedures and we therefore purchased the right to know what is going on and who is doing what to whom.  So I agree with you.  Then you faced the very poor post surgical care.  Surgeons ought to know about post anesthesia hangovers! You will be blessed for forgiving him, but not reporting his poor practice to hospital and state authorities will allow it to happen again.

How did the medical oncology switch happen?  I recall mine describing my tumor residuals as round scar tissue lacking spiculation normally seen in metastatic tumors.  So, I am hopeful you are out of the metastatic woods.  I also consider Opdivo continuance to be a good thing and hope your PET and bone scan confirm the CT result.

I wouldn't have a clue about Opdivo causing inflammatory arthritis.  Their literature reports pain in muscles, bones and joints as a common side effect.  I had joint pain as my principal side effect from Taxol and Carboplatin. But my joints were not inflamed, just painful.  There was no swelling or discoloration.  I do know how uncomfortable joint pain is, and indeed for about 4 days in each infusion cycle, I was in intense pain.  There wasn't a lot I could do about it either.  

I'm hopeful the Palliative Care doc has some ideas.  That medical discipline was scarce when I was in treatment.

Stay the course.

Tom

[LexieCat]

Hi, Judy,

I have nothing helpful I can say to you--everything you experienced is stuff I'm not familiar with--but I'm sorry it was such a difficult and painful experience.  It sounds pretty miserable.  I agree with Tom that it's worthwhile to complain about your treatment, if only to maybe spare someone else a similar experience.  Don't worry about it this minute, but when you're feeling stronger it seems like it's worth doing.

I hope the treatment was successful--keeping my fingers crossed!

Teri

[BridgetO]

Wow, you've been through a really hard time with the ablation! I don't know anyone  who's had this. I would certainly complain about the switch of doctors at the last minute and the lack of effective pain control.  I hope your palliative care doc can help prevent these pain issues in future. Hang in there

Bridget O

[LexieCat]

One question, Judy--I wasn't familiar with the term "cementopathy" and I googled it and came up with nothing (apart from your posts).  What does that refer to, to your understanding?

[Judy M.]

Tom

Thanks for your answer and encouragement. 

If by how did the bait and switch with the Oncologist happen you mean why am I having to change Oncologists it's because my present Oncologist has taken a job in another city.

I don't know how to report the IR who did the procedure to the hospital, but I did talk to my Med. Oncologist who referred me to the other doctor and Pulmonologist about it afterward. 

What has gone on in my leg is odd. Initially radiation got me walking normally with almost no pain. Then my hip began to hurt again and gradually got worse and worse with eventually quite a bit of swelling. Then my knee also began to hurt and swell. The pain travels from my butt all the way to my ankle, but not always in the same spot and not consistent. Have had mornings when I wake up and the leg is still stiff and weak but no pain. So, I'd happily take no pain meds. Then about 11 a. m. or so it would return with a vengeance. For some time I only had pain if I tried to lay on my side or put pressure on it by walking or sitting. Now I may have it any time though those things still make it worse. Resting it helps. That's why I thought maybe trochanter bursitis. Those are the symptoms. The MRI on my hip and thigh showed the tumor that was still in my bone plus inflammatory edema. Radiologist thought possibly an infection but that has been ruled out and tumor is gone according to latest scans. It was literally fried and I felt it. Doc's APN insisted I try a heavy duty narcotic for pain which I really didn't want to do but tried it. Did nothing at all for my pain. Since this is also one of the narcotics they gave me for the conscious anesthetic this may be one reason I had some pain. I made the decision after trying it for over a week and her doubling the dose on that and another narcotic with little relief that I just wasn't doing that any more. So called a pharmacist to find out if I could safely take Gabapentin rather than the narcotics and start cutting them down and I did. During that time I was so desperate for relief that I prayed and ask for wisdom in what to do. I put a Lidocaine patch on my hip and heat on my knee and got some pretty good relief. That's what made me think of some sort of inflammatory arthritis caused by the Opdivo. I know I don't have Rheumatoid because it's only in that leg. But read immunotherapy may cause other types of inflammatory arthritis. I didn't even know there were other types. Gabapentin supposedly only helps nerve pain. But it's what works. So, now it's Gabapentin and a moderate pain killer, keep a Lidocaine patch on my hip and warm up my knee. Maybe someone here or the Palliative care doc will have some ideas. Glad I don't have to use narcotics at least. But I cannot sit for any length of time without bad pain, so can no longer drive any distance. And that's a problem because my treatment is 45 minutes one way. 

Judy M

[Judy M.]

Lexie

Maybe I got the term wrong. It's what I remembered as being on my paper work. After he burned the tumor he injected something called bone cement into my thigh bone until it exited the bone according to him on the report. The nurse handed me a piece of the stuff to look at before the procedure. He assured me that wouldn't break if a car ran over my hip, but I don't want to try that. I know 2 holes were bored into my hip bone to do the ablation, so this would have filled those in and I suppose whatever other weak places I have in there. Bone cement is also used to help those with osteoporosis and I've heard it works quite well for that. When you have bone mets they weaken your bones and put you in danger of them breaking. This is one thing they can use to strengthen them. 

Judy M

[LexieCat]

OK, I think I figured it out.  The term is "cementoplasty"--so you were pretty close!

Thanks, it's good to learn stuff like this.  My mom experienced a stress fracture in her femur when her breast cancer metastasized--she had a bad reaction to the anesthesia when they were going to operate to try to fix it, and she never recovered from that.  I love all these medical advances that keep happening.

 

[Judy M.]

Lexie

Looked back on paper work. I did get it wrong. It's called cementoplasty. Which makes sense because the stuff feels like a rock hard plastic. Hopefully, whoever reads this will forgive my ignorance and read far enough to get the right term. Thanks for asking. 

Judy M

[LexieCat]

Great Minds Think Alike!