My Mum, 49yo in Australia
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- This topic has 124 replies, 14 voices, and was last updated 7 years, 7 months ago by chinesechick.
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August 5, 2016 at 4:39 am #89915marionsModerator
Tiah…..so sorry to hear the news, but happy that a treatment plan has been determined. I am wondering, should the biopsy reveal CCA, will it be sent for molecular testing as well?
Please give our love to your Mum and tell her that a tidal wave of good wishes are heading your way.
Hugs,
MarionAugust 5, 2016 at 2:11 am #89914lainySpectatorTiah, so sorry about your Mum’s new lesions. But what I hear is that they are still proceeding with the surgery so that is still the good news. Hang in and hang on this crazy roller coaster ride. Sending good thoughts and vibes to your family.
August 5, 2016 at 1:23 am #89913tiahMemberHey everyone..
Some not so great news. Mum went in to the hospital today and they found there was 2 lesions when they did an ultrasound, and they are both on the surface of the liver on different sides. As a result, they have postponed and she will be having the lesions biopsied and then ‘burnt off’ in a couple of weeks at the major hospital here in Adelaide.
I feel pretty gutted that it has spread. I’m hoping that they burn this off and there is no spreading to lymph nodes and she will still be able to have resection in a few months time. Luckily the lesions are on the sides where the tumor is and hence the side of the liver to be resected.
I feel awful for mum, she’s exhausted emotionally.
July 23, 2016 at 6:18 pm #89912gavinModeratorThanks for that Tiah and great news indeed! Not sure about the other new spot but hope that the surgeon can get to work on that asap. Please let us know how things go with everything.
My best to you and your mum,
Gavin
July 23, 2016 at 4:31 pm #89911debnorcalModeratorTiah, that’s great news that the surgeon feels comfortable performing surgery. I hope your mom continues to feel well and can enjoy her time with family as she waits to have her surgery.
July 23, 2016 at 1:21 pm #89910lainySpectatorTiah, HURRAH for the successes no matter how small they may be. I too am confused about the new little spot. Mmmmm…I do remember when Teddy had radiation and we had to wait 3 months for the next step while the radiation was working. I called it the Ever ready Bunny…….it kept on ticking. Wishing Mum the very best.
July 23, 2016 at 10:24 am #89909tiahMemberFirst results from the SIRT spheres are in. There has been some success so far; the portal hypertension and oesophageal varices have now resolved as the tumor is no longer putting pressure on the portal vein. This means her surgeon is now more comfortable with performing surgery! However he said he cannot operate until 6-‘month post SIRT due to the radiation. The SIRT will continue to work in the mean time.
However, while there is all good news, it appears that there is now another spot in the liver, sitting behind the primary tumor. The oncologist was not concerned however the surgeon was and said he wants to have it biopsied and potentially burnt off? I haven’t heard of this being done before. Apparently the spot is superficial in nature. I’m still confused on what that means but from what I understand it sounds like it’s on the surface of the primary tumor. It’s all so confusing, but I suppose we will find out more about it soon.
July 19, 2016 at 4:09 pm #89908debnorcalModeratorTiah,
Glad your mom is feeling relief from the pain. Try to relax and not worry about the interim ct. As you said, her doctor should have a much better understanding of your mom’s current status
Once the new CT is done for comparison. Praying for positive improvement evidenced in your mom’s upcoming scan!July 19, 2016 at 12:54 pm #89907lainySpectatorDear Tiah, sending out prayers, good vibes and a ton of great juju for a better Scan. Not sure why different places show different results in scans but I do know first hand that it does happen. Like, everyone needs more worry and frustration, right? Fighting CC is not for sissies which is why I marvel at the strong members on this Board and you are definitely one of them.
July 19, 2016 at 12:18 pm #89906tiahMemberHello wonderful CC family. Here is another update, however I will be able to elaborate much more later this week. I feel we are all having a case of scanxiety as mum will be having her first proper scan since receiving SIRT.
I feel I have lost a track of time a little bit, but approximately 1 month since she received SIRT, mum was experiencing severe pain, to the point she could not bear it (and mum has a very high pain tolerance and rarely will take pain relief), and so she was taken to the emergency. After receiving some Fentanyl which eased the pain, they went investigating in the ED for the cause. The pain originated from the liver/right upper abdominal area and radiate outwards. They ruled out any issues with the stomach and also ruled out clots, and she had a chest scan which was clear.
Her CT scan of her abdomen was what left us very confused and worried. Originally we were told that the scan had to wait at least 2 months post-SIRT, as otherwise if a scan is done too early, the scan will show negative results, a “it’ll look worse before it looks better” scenario. Anyway, mum received a PET scan before she received SIRT which showed no spreading of disease; still just the one tumor located in the liver (however, it is extremely large). This PET scan was done at a different hospital to the one where she was in the ED with pain. So when she had the CT done, all they could compare it to was a CT scan from January this year. The results of the scan said “advancement of disease” and apparently 2 new spots in the liver were identified. However, the radiologist was also unaware of the SIRT when the report was written. At this stage we were panicking. Mum was discharged the following day as the pain eased, and she was given pain relief to take home in tablet form.
She called her oncologist the following Monday and spoke to him over the phone, who reviewed the latest scan. He said he is unsure of what the cause of the pain was and said he was not concerned about the scan, as they were comparing it to a much older scan and there’s no issues with the new scan. Which brings us to the point where we are feeling confused and overwhelmed, however we have been trying to remain positive and trust in that the oncologist had no concerns.
She is having a CT this Thursday, at the 2 month mark post-SIRT. Here’s hoping for some positive results. Will keep you all posted.
June 13, 2016 at 11:50 pm #89905marionsModeratortiah…….thanks for keeping us in the loop. Continuous wishes for a fantastic response with the SIRT treatment are heading your way.
Hugs,
MarionJune 12, 2016 at 11:59 pm #89904middlesister1ModeratorHi Tiah-
Thanks for checking in. Interesting and sorry your Mom had nausea. My Mom was just extremely tired. Wishing the best that scan results will make what she is going through worthwhile.
Take care,
CatherineJune 11, 2016 at 3:46 am #89903tiahMemberHi everybody. I thought I would update you all on how mum is progressing post-SIRT.
It’s been a few weeks now, and as expected the side effects did settle in, most notably nausea, lethargy and loss of appetite. We were all very prepared for this. She’s finally starting to feel better however still experiencing some pain/discomfort in the upper abdominal area (near the liver). So far else nothing much to report. She will be having her first scan post-SIRT on July 21, so I will have more news for you all then.
Tiah
May 18, 2016 at 5:19 pm #89902gavinModeratorThanks for that Tiah and hope that all goes well with your mum and the SIRT treatment. Please let us know how it all goes and a happy birthday to your mum as well!
Hugs,
Gavin
May 18, 2016 at 6:58 am #89901marionsModeratorTiah…..count me in on the Birthday wishes. Your Mom deserves a great day and fantastic results from the SIRT treatment.
Hugs,
Marion -
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