iowagirl
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Brigitte,
First diagnosed late Jan 2014, followed by resection of part of my left lobe…stage T2b…5 cm intrahepatic tumor 2.2 cm clear margin late Feb 2014
Gem/Cis for 6 rounds post resection…kidney damage, hearing damage, neuropathy and memory/function problems (May-August)
First recurrence Nov 2015 …1.5 cm tumor along the first resection line of left lobe…followed by wedge resection of tumor with 1/2 cm clear margin Dec 2015
Second recurrence July 2016…1.1 cm tumor in right lobe followed by ablation August 31.
This last recurrence, there was a lot of pressure for me to do chemo again…a different kind. I pushed back and found out that they had not consulted a surgeon or IR…..and after talking with those people, there was no question with either of them that the ablation was the route to go.
I recovered very well and quickly from the ablation…..and have had two months of feeling pretty good (except for the residuals of some virus crud that caused ear infections and now dizziness…unrelated to the cancer or ablation obviously…..and….also a kidney stone that decided to cause me some trouble).
In general, though, I have had two very good months …far easier than recovering even from laproscopic surgery….and waaaaay easier than dealing with chemo. I do not know WHAT the problem was with the oncologists involved, but I sure wasn’t happy that they had not consulted the surgeon. My mantra that I have adopted from another board member here is….”It is surgical, until it isn’t.”Yes, the point of the ablation is to destroy the tumor completely. I would not hesitate for a moment doing it again if It was necessary and I had the choice/chance.
I go back this next Wed-Thurs for scans which is making me nervous. I’m getting a little gunshy at this point about the possibility of another recurrence. So far, I’ve been lucky enough to have recurrences be in places that could either be resected or ablated. Keeping my fingers crossed that if it shows up again…..I can continue with this local method of treatment instead of systemic treatments like chemo. I did have a biopsy done first of the tumor…..before it was ablated….and had them send it to Foundation ONe for mutation analysis. Again, I had to press for this, but I want that info in my hip pocket in case the situation arises that it comes back where it is not operable.
Julie
Brigitte,
I just had the procedure you mentioned….or very similar. He is likely referring to an ablation procedure. The is RFA (radio frequency ablation) and Microwave Ablation.. both which would be described as zapping or burning the tumors. It is “usually” done by an IR (interventional radiologist), though some surgeons also do it.
It can be done laproscopically, though the way I had it done just recently for a 1.1 cm tumor was by the IR guy. They used CT and MRI to guide a needle device through the skin to the liver and into the tumor. When the needle is in place, they then turn on the device and ablate the tumor which essentially vaporizes it. They usually try to ablate a margin around the tumor, similar to what they would do if operating to resect the tumor to get a clean margin. So, the ablated area is slightly larger than the tumor itself.
I think there are some reasons for doing it laproscopically, but I don’t remember now from the reading I did prior to mine being done. I would ask why it would be done laproscopically instead of percutaneously.
If they had not put a bandaid over the place where the needle went in, I would not have probably been able to find it. There is a possibility of some flu like symptoms 3-5 days after the ablation, which I had, but relatively minor. I didn’t vomit…just felt like of yucky and had a temp for about 3 evenings (only in the evening). After the first 36 hours, I had some ache just below my rib cage area….which hurt some when I coughed, sneezed or moved too much. That only lasted about 24 hours though . I had to stay overnight in the hospital for observation, though some hospitals do not require that. I was also sent home with a 10 day prescription for a strong antibiotic to try to ward off the possibility of an abscess in the liver. It is a complication of the ablation, but has a pretty low complication rate. The smaller the tumor, I think the less chance for complications. The flu like symptoms for several days is probably the most common complication I found. They will fully inform you of any risks/complications though.
I can say, after having two laproscopic resections, this ablation was absolutely simple and once I was past the flu like stuff (which about 20% have), I have felt just fine, like nothing ever happened. Recovery time was really pretty nil.
In my case, I had a tumor appear in the oppositie lobe from the original tumor and the first recurrence. The surgeon said he could resect it, but in this particular case, it made more sense to ablate it because of its size (small…less than 3 cm) and and location. It was toward the center of the left lobe and to resect it, would cause him to have to cut away more good liver tissue to get to it. The ablation would preserve more of the good liver.
If you have any other questions, just ask. I can’t think of anything more to tell you right now.
Thanks for the new, additional info on the biopsy. Maria. I’ll keep that info in my folder for future reference. It’s good to know that the liquid biopsy was close to the same test results.
Julie
Gavin….have my finger crossed…..scans are about 2 weeks away or so…..end of the month….and I’m starting to not only get scanxiety….but something similar about discussing all this with the oncologist. I’m hoping that he just changes his tune, but it would have to be a 100% turn around….because he not only didn’t like the local treatment vs systemic approach, but also pretty much put down any other types of treatment other than chemo. And….this guy is supposed to be an expert with CC. I’m going ahead and talking to him…..because I think it needs to be addressed…out front and in the open. We danced around things a lot the last time we met…..though I was very sure he knew why we’d asked to see him….there had been consultations between doctors without us. Wish us luck!!!
Catherine, I a over the moon happy about your mom’s latest news. So many things to celebrate. Give her a big hug from me. Love hearing this!!!
This is good info for me right now before going to see my oncologist. Thank you for finding and posting this Gavin. I liked especially the last line…”Re-resection should be performed if reasonable.”
Jullie T
Marion….is this the same study that had started back in 2014 at Mayo and other locations. Or, is it a new one?
Juie
Maria….thank you for posting this. I have heard of Guardant360 and liquid biopsies, but will be interested to see how this works. Please post more if your mom does the liquid biopsy. Also the financial info is very good info for us to have here. I just read info on Foundation One financial billing info and it sounds very similar. It was hard to find on the website, …under info for physicians , I think. I guess the idea was for the Dr. to pass along the billing info to the patient…but I can’t imagine many doctors taking the time to find out costs.
Just curious, ….did they happen to mention what the “retail” cost billed to Medicare or Insurance was ? I think for a solid tumor sample through Foundation ONe the website now says something like $5800 plus or minus. I don’t have the exact amount right here to quote.
Julie
I was not aware either of the work of the Foundation in helping our patient population gain their SS disability benefits. Thank you CC Foundation for the work you do in our behalf.
Julie T.
Anne, I did 6 rounds of Gem/Cis chemo after the first resection and it did take its toll on my body. My toes rubbing together feel like there is sandpaper there between them…but only on the left foot. The other foot seemed to improve and lost that feeling. I don’t have pain in my legs or feet, but plenty of numbness…not all over…but in ‘areas” It’s very weird. What chemo did your husband do? Every night when I go to sleep….I have to find a comfortable position for my feet…as my heels are overly sensitive since doing the chemo and they start hurting within a half hour if my toes are straight up. Otherwise, my side effects from the chemo include kidney damage, chemo brain and some hearing impairment.
Unless ICC comes back in somewhere truely inoperable or ablateable, then I’m sticking with no chemo for now. I agree….chemo does have awful after effects.
Julie
Anne,
RFA and MWA (microwave ablation) are very similar. I just had microwave ablation Aug 31st and it was very, very simple. My side effects were a temp for about 3-4 evenings (with chills) that started about day 3, and a slight tenderness at the needle site, just under the skin that lasted about two days, but didn’t bother unless I pressed on it.
I think that RFA is generally now used for larger tumors and MWA for smaller than 3 cm. I have heard of larger ones than you mentioned being ablated, but it has to be done in more than one…or even more passes with the ablation process. The smaller the tumor, the more likely it is completely ablated in one session and a redo isn’t necessary. There have been a lot of improvements in ablation in the past 4-5 years.
I am totally sold on ablation wherever it can be used. Recovery was simple. Some doctors keep patients overnight in the hospital (mine for one) and some dismiss the same day.
Ablation can usually spare more “good” liver tissue than resection, though there are times that ablation can not be used, or it is riskier to use than resection, such as when it is too close to an artery or vein….or another organ. There are techniques they can use, even so, to make even some of the more difficult situations possible. I asked my IR guy how many tumors in the liver they would attempt to ablate….and his response was about 3…..but I think it depended on size and location.
My tumor this time was 1.1 cm….fairly small. I’ve previously had a resection for a 5 cm tumor in 2014 and another resection for a 1.5 cm tumor in 2015.
I healed quickly from the resections (laproscopic), but the ablation was simple and fast. I’m fine now…no after effects. I had two trips to the ER after getting home that were unrelated to the ablation and CC. Go figure!!!
Julie T.
The main problem I’m having is finding an oncologist who will continue with this line of treatment if possible. They seem to only want to do chemo past two recurrences.
Last update on the recent ablation and ER visits:
1. The only side effects from the ablation itself appear to have been 3-4 nights when my temp rose. Only one night (day 5) did it rise over the 100.4 cut off for contacting the doctors and even then, they wanted to wait and see another 24 hours. And….the other side effect was something fairly obvious, …..the area was slightly tender for several days and I couldn’t lie on my side without some discomfort (not really pain). One night it was uncomfortable…and the next morning it was fine…about day 5.
2. The cough and dry heaving was definitely asthma , secondary to a respiratory infection I caught almost 6 weeks ago.
3. The pain in the abdomen has not come back…and likely due to one, small kidney stone.
Neither 2 or 3 were related to #1, but they muddied up the waters on diagnosis for each other.
Still coughing some, and using inhalers to try to get the bronchial tubes to settle down and not spasm. It’s better, but not great yet. Had a pretty sizeable asthma attack last Friday night, but am back to where I was before it happened.Julie
Yup….I understand totally. My old insurance didn’t require pre-authorizations for much of anything that I remember. This new one is kind of vague which bothers me that it could get screwed up, but I’m just hoping it stays fairly simple until next April when I can switch to something more normal. Right now….I have bills from July that haven’t been paid yet because of the screwups in billing…..and now more that are screwed up. I’m going to deal with it on Monday after I make a full accounting of everything in a ledger to see just where we are with things, so when I have my chat with the provider…..I can be organized and know what I’m talking about. It’s a lot to keep up with.
