The Colon Club

SKB,

Glad we are both still alive and kicking. This stuff is tough to deal with and can really bring you down. Stay positive, I am very positive and try my best to stay strong. This is not easy.

My cancer is currently stable I am on a six week break from last chemo. I do Avastin and take the pump home for 3 days vs doing the pills.

Yeah I messed up on a few things during Watch and Wait. One of the key factors was to do chemo after, but I didn't and I am not sure if that made it come back. It is really tough making decisions regarding cancer treatment.

I hope your PET shares some results to make you more complacent, I know how much anxiety CEA is!!

Also to answer your question, yes CEA can jump from Jan to July. Were you getting any treatment during this time? I took a break for like 5 months and my CEA jumped and there was progression thus I have to be on chemo for life, or hopefully cancer just dies and go into remission.

I wish you all the best as well my friend!!
Riki

Hi Rikimaroo

No, I was not getting any treatment from Jan to July when the CEA jumped. I have not got any chemo since 2017 Dec and no treatment since solitary lung nodule surgery in August 2019.

I got some chemo after my wait and watch but I did not get any after the solitary lung nodule surgery in 2019. Now I am wondering if I should have. But the scans were clean for two years after that

My CEA was never elevated until last month. During diagnosis and the lung met, it was all < 0.5

The PET scan found a hypermetabolic lymph node in the pelvis measuring 1.6cmx1.2 cm (near obturator chain in pelvic region) that was ruled 'recurrence' unless proven otherwise. I am so bummed. Has this kind of met been treated for any of you? If yes, please share details. I have not met with my oncologist yet.

The PET did not find any other lesions or lymph mets

A biopsy confirmed metastasis to retroperitoneal obturator lymph node

I am back on the forum , 9 months after an abdominal surgery to remove retroperitoneal lymph node metastasis. This was followed by FOLFIRI (12 rounds- that is 6 months) during which I lost all hair
I suffered foot drop from the surgery due to nerve damage sustained during the surgery . I limp and use a walking stick. I have physiotherapy sessions. Also my bowel control is less than ideal, I often have to rush to the bathroom.

What is interesting is that the surgery took 10 hours and did not find any lymph node that had metastasis. Out of 6 samples taken, two tissue samples had cancer. I doubt if the procedure that made me kind of disabled was necessary at all. Here is the pathology report. I made complaints to the hospital about nerve damages but they say that I have no case and these are normal risks that manifested itself. i also tried getting some lawyer to represent me but no one out of 10 people I called was willing to take the case.

Are all these things common in pelvic surgery? (losing normal mobility, using a walking stick, reduced bowel control)
I felt very healthy before I went into surgery. Now I am a mess.


--------------Surgical pathology report- Oct 1st, 2021-----

A. RIGHT OBTURATORLYMPH NODES X5, EXCISION:
Negative for metastatic carcinoma (0 /5)

B. RIGHT OBTURATOR LYMPH NODE X1, EXCISION:
Negative for metastatic carcinoma (0 /1)

C. RIGHT OBTURATOR LYMPH NODES X2, EXCISION:
Negative for metastatic carcinoma (0 /2)

D. RIGHT OBTURATOR LYMPH NODE, EXCISION:
Fibroadipose and neural connective tissue:
-No lymph nodes identified; negative for carcinoma

E. PET POSITIVE RIGHT OBTURATOR LYMPH NODE, PART 1, EXCISION:
POSITIVE for carcinoma (intravascular):
-Fibroadipose and skeletal connective tissue only
-No lymph nodes identified (See Comment)

F. PET POSITIVE RIGHT OBTURATOR LYMPH NODE, PART 2, EXCISION:
POSITIVE for carcinoma (perineural and soft tissue):
-Fibroadipose, neural and skeletal connective tissue only
-No lymph nodes identified

Sorry to hear about this.