The Colon Club

When I was first diagnosed in 2015 I had a CT scan and a “stable umbilical hernia was seen.” Jump ahead to July 2018..I start having pain around my belly button. Last month the pain had gotten bad enough so I went and saw my GP. She sent me for a CT, which took nearly 3 weeks to be scheduled. Keep in mind I just had my annual CT in May and everything was clear.

Today was my follow up. Below are some of the findings:

New subcentimeter pulmonary nodules, largest 6mm

1.8cm hypodensity in the dome of the liver which may represent a surface implant of carcinomatosis

Multiple soft tissue nodules in the abdomen suspicious for carcinomatosis

2.8cm nodule adjacent to the gastroheptic ligament
1.7cm nodule in left upper quadrant
1.9cm nodule adjacent to the right lobe of the liver

1.2cm nodule in the right lateral abdomen
1.8cm nodule anteriorly in the right abdomen

I’m waiting to get in with my oncologist. What’s next, PET scan? None of this sounds good to me, hope it’s not as bad as it sounds. Can’t believe all this could happen so fast. Oh, and they saw no evidence of a hernia...

I am sorry to read this fluff.

Reoccurrence is something nobody wants hear on this forum. Much like your initial diagnosis, buckle down and get ready to fight again. Your oncologist will dictate the plan and my recommendation would be to make sure you visit your closest major cancer center to make sure you have all of the data to make your best decisions going forward.

We are all here for you and our thoughts and prayers are heading in your direction.
All the best moving forward. Keep us posted.
WS

Standard treatment is chemo forever. Multimodal treatment is a careful, integration of advanced treatments, like optional chemistry(s) and surgery(s) for complete local cancer removals where possible, and more effective use of nicer metronomic (immuno)chemo closer in to surgery. With some luck, you'll do far better. Such advanced options require exploration, preparation and serious self advocacy.

We have been able to knock off mets in different locations, step by step, far beyond "standard" results, with a high quality of life, for more reasonable costs.

Most people let their doctors and insurers override them and fly more blinded, but I would make sure I got, at least, CA199, AFP, LDH, ESR, hsCRP, and maybe CA125 included in my bloodwork, at least once right now before any treatment. You'll be better positioned/prepared to evaluate, discuss (in many places, like here) and monitor the situation long term, beyond standard bloodwork, like CEA + CBC with differentials + CMP. This is an important moment in your story.

Geez. DH is in the same boat. Clear CT in May and we are now dealing with a brain met (removed 2 weeks ago), spinal mets (being radiated), femur mets (hip replaced 2 weeks ago) and pelvic mets. Get a good plan and start fighting!

Thank you all for your responses and support. I will be working on my plans ASAP!

That's just unbelievable that you were clear in May and have so many spots 3 1/2 months later! I honestly pray that they made an error and the next test will just show the hernia.

I'm so sorry for both of you.

Diane

Sorry to hear this. Similar boat here. Clear CT scan 08/09/18. “New” spots identified 08/28/18 after MRI. Later confirmed with PET scan. Biopsy scheduled for Monday because according to my onc, all my other markers are normal. So, they want to be 100% sure.

Mind you, my last chemo session was 05/16/18 to allow Avastin to exit my system before liver resection 07/02/2018. Still, a 3.5 month progression-free rate is dissapointing if indeed I have new metastasis. But, like others have stated, just gotta get ready to fight again.

Sending thoughts and prayers your way.