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Update from Rikimaroo

Posted: Mon Sep 17, 2018 4:59 pm
by Rikimaroo
I have not been on for a little. I finished 6 rounds of FOLFOX on 8/15/2018. My neuropathy still there and its annoying but tolerable. I did a pet scan and a mri on Friday the 7th and got result last Wednesday. Dr. said PET SCAN looks good, nothing. MRI came back with 1.1 cm soft tissue implant in the right deep pelvis, consistent with recurrent/metastatic disease. He said since the PET scan didn't light up it probably isn't anything but he still wants me to do a biopsy. Dr. said that he thinks it Scar Tissue but is not 100% sure. They had a meeting (tumor board) and discussed it and said the next step would to do a biopsy to make sure its not recurrent cancer in the rectum.

As you all know my CRM was positive and I did Chemo hoping it would eliminate any chance of recurrence. I am not sure what this is but I am a little stressed, when I try to keep jovial and positive. Anyone else been in this predicament? Let me know your outcome/stories. One thing is if it comes back positive for cancer, I will need to undergo another resection which will possibly lead to a permanent ileostomy. I had Ileostomy reversal scheduled for October 17th but now if this is a recurrence I will not be able to do it.

I am praying and hoping its nothing. Please pray for me as well and let me know what you guys have experienced, I know everyone's different.

This is the MRI:

TUMOR
* There are new postsurgical changes of proctectomy with coloanal
anastomosis. No distal colonic wall thickening or abnormal enhancement.
* 1.1 x 0.9 cm enhancing soft tissue nodule in the right deep pelvis
(series 18 image 47; series 10 image 19) with mild focal FDG uptake on
PET performed earlier today.

Now I am wondering if this is the rectum or somewhere else. I am going to message my Doctor, I thought it was a possible recurrence in rectum but this might not be, not 100% sure now. ugh1!

Re: Update from Rikimaroo

Posted: Mon Sep 17, 2018 5:44 pm
by Cmac1275
Praying for good results, Rikimaroo.

I just had a biopsy on my left liver performed today. I am 2.5 months out from liver resection and MRI / PET scan show new spots on my liver. Pretty frustrating considering chemo worked well and allowed for resection in the first place. I thought I was on my way to possible NED once we were done with the second resection. But, now we wait and see if this is truly new metastatic tissue or something else.

Regardless, stay positive. I know it’s hard when there’s uncertainty and we don’t have absolute answers. But focus on the fact that the PET scan didn’t light up with metabolic activity. It really could be a false positive of some sort.

Re: Update from Rikimaroo

Posted: Mon Sep 17, 2018 6:13 pm
by mozart13
Hopefully is just dead /scar tissue as per PET scan, but one could never be for sure.
Last year I was talking to my onco about lymph nodes, she mentioned that very often after chemo nodes shrink, but remain visible, and don’t create problem as they are no longer source of cancer, basically dead.

My prayers and best wishes man.

Good luck!

Re: Update from Rikimaroo

Posted: Mon Sep 17, 2018 7:26 pm
by Lee
I too will be praying for you. This was a few years back, butt I was told PET scan was the gold standard for possible cancer activity.

All the best,

Lee

Re: Update from Rikimaroo

Posted: Mon Sep 17, 2018 11:33 pm
by AppleTree
I had a questionable CAT in July. DR ordered a PET in July...it did not light up! Interestingly enough, the PET shows where I get my monthly Sandostatin shot. Then the DR ordered another PET in October...just to be sure. AND said for me to keep my port for a year. Talk about worrisome actions. October can't get here fast enough. I think it is totally normal to worry about these scans. I get it, I really do. Is it good, questionable, not so Good? Well, at least they keep scanning regularly. Breathe deeply and try to relax. My body does not handle stress well. I am often accused of not doing stressful jobs. Yup. Trying to stay healthy!

Re: Update from Rikimaroo

Posted: Tue Sep 18, 2018 10:39 am
by Rikimaroo
Thanks for the replies everyone. It helps alot. I spoke to my Onc this morning and he said it is something in the rectum so that cleared things up about it being somewhere else int he pelvic region.

I really hope its nothing, but the Onc did say the pet didn't light up but it wasn't far from the numbers of being concerning. FDG uptake or something like that wasn't enough to make the pet show anything but it was mild fdg update.

Either way I am ready for whatever, just sucks. If it comes back positive I will have to do an APR which means permanent bag. I am OK with this, a bit annoyed but it is what it is.

Re: Update from Rikimaroo

Posted: Tue Sep 18, 2018 11:43 am
by DarknessEmbraced
I hope everything turns out well for all three of you!*hugs*

Re: Update from Rikimaroo

Posted: Tue Sep 18, 2018 1:57 pm
by Rikimaroo
It so crazy every time you speak to your doctor you have several questions then when he hangs up and you think about it more you think of more questions.
Now thinking about this the MRI I did in March 2018 was what they used to compare to the MRI I did in September 2018 which showed the soft tissue increase. My thing is I had surgery after this March 2018 MRI, LAR/Liver Resection and wondering if that left scar tissue.

I am hoping that's what it is, but would that have gone away or reduce since april to now? Just reaching and wondering if this is a local recurrence or nothing at all.

Waiting to schedule my biopsy have not heard back from them yet.

Re: Update from Rikimaroo

Posted: Mon Sep 24, 2018 9:08 am
by Rikimaroo
CT Guided Biospy scheduled for tomorrow. I am so nervous but I am ok. If the results come back to where it is cancer and I need an APR then I can live with a permanent bag. Will they transfer the ileostomy to a colostomy? I was wondering if that would stay, because why ignore the entire colon...

I really hope its nothing but scar tissue or something from the surgical site.

Re: Update from Rikimaroo

Posted: Mon Sep 24, 2018 10:08 am
by Atoq
Good luck for tomorrow! I had a colostomy and the ileostomy on the same site, so it is possible.

Hope it is not cancer.

Claudia

Re: Update from Rikimaroo

Posted: Mon Sep 24, 2018 6:21 pm
by Cmac1275
Checking in and sending positive vibes, prayers your way. Hope the news is good.

For what it’s worth, I had CT guided biopsy last week. I don’t know how different yours will be since it’s a different part of the body. But, I can tell you the procedure was virtually painless and quick. Didn’t really have much soreness afterwards either.

Good luck and let us know how it went.

Re: Update from Rikimaroo

Posted: Tue Oct 16, 2018 2:13 pm
by Rikimaroo
Biopsy went well not painful at all. Came back negative for cancer :o

Getting ileostomy reverse tomorrow. Looking forward to it but very nervous.

Re: Update from Rikimaroo

Posted: Tue Oct 16, 2018 2:53 pm
by Punky44
Great news! Good luck with tomorrow’s procedure!

Re: Update from Rikimaroo

Posted: Wed Oct 17, 2018 9:53 pm
by prs
Hope all is well and wishing you a speedy recovery!

Re: Update from Rikimaroo

Posted: Thu Oct 18, 2018 4:03 am
by Atoq
Good luck! Nice to get it done.

Best

Claudia