microscopic peri mets

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jillbugs4110
Posts: 266
Joined: Thu Jul 31, 2014 3:36 pm

microscopic peri mets

Postby jillbugs4110 » Mon Jan 26, 2015 4:36 pm

Hi

I was side blinded last week as we often are while dealing with this disease. I went to get second opinion and this whole time I was led to beleive there was only lymph node and liver involvement. Im running around trying to see if anyone wants to bring to the brink of death so I may stay longer for kids, At this second opinion I was told for the first time in 6 months without knowing they found microscopIc cancer cells in my peri lining in my initial surgery they are not visible on scans punch me In the face. I was told localized tratment was out just blasting me with chemo. If anyone has feedback on things to explore I would appreciate it. I am in reality I know the outcome just desperately looking at all things due to young kids at home. If it was just me I'm sorry I would fly to europe backpack stop in Amsterdam and just wait it out.....but this is not my reality.
Live One Day At A Time
I Abandon myself to God
46 6 yo.....9yo...
stage 1V liver mets :-(
my one prayer to got to sustain me to raise my two babies this is my only wish then take me out if needed.

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: microscopic peri mets

Postby skypup » Tue Jan 27, 2015 4:18 am

I know very little about peritoneal mets except that is what HIPEC is for, and getting a surgeon on board when we have other mets would likely be nigh impossible, but perhaps worth asking? Have you read your pathology report? Seems like these peri mets should have been mentioned there. Also, you can get a copy of the surgeon's report and read for yourself what is what.

Hugs to you...

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: microscopic peri mets

Postby cathy123 » Tue Jan 27, 2015 8:36 am

Jillbugs - I am early in this fight so don't have good advice, but just want to say I hope the chemo can do its job and then the drs can give you hope. I have kids around the age of yours and it is really hard to imagine leaving them. Best wishes.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: microscopic peri mets

Postby cathy123 » Tue Jan 27, 2015 8:37 am

Oh, and I would be very angry info was held back from me. Some of my drs also seem to tell me what they think I need to know instead of the whole story.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

User avatar
Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: microscopic peri mets

Postby Bev G » Tue Jan 27, 2015 10:11 am

Hi Jillbugs,

I'm so sorry you got blindsided by the news of the peritoneal mets. That just seems so wrong. I'm hoping for you that the chemo can kill off your liver mets so that HIPEC may become possible. Are you going to an NCI cancer center? Where do you live. WIshing you a great plan and cooperative docs.

Best wishes,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

jillbugs4110
Posts: 266
Joined: Thu Jul 31, 2014 3:36 pm

Re: microscopic peri mets

Postby jillbugs4110 » Tue Jan 27, 2015 10:48 am

Bev....I live in portland OSHU

skypup.....have you had surgeries??

Both of you are very knowledgeable is the peri mets uncommon I guess theh are tiny microscopic and only visible in lab...chemo has wrked they are very skiddish about me doing y90 or hipec due to the cancer not just being in one place....

cathy....ty for kind words im so happy you caught it early no child should be without a mother.
Live One Day At A Time
I Abandon myself to God
46 6 yo.....9yo...
stage 1V liver mets :-(
my one prayer to got to sustain me to raise my two babies this is my only wish then take me out if needed.

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: microscopic peri mets

Postby skypup » Tue Jan 27, 2015 11:13 am

Good morning Jillbugs,

Peritoneal mets aren't uncommon -- not quite as common as some other sites, but not terribly unusual. I am just wondering how they know about them if they are microscopic. I don't think it is routine to biopsy the peritoneum when doing a resection. So what surgery have you had so far?

I have a "suspected" peri met from CT scan, but they can't tell definitively. Even if it is there, surgery is off the table for me due to other mets. A bit of encouragement: you can see that I am 6.5 years out and still feeling pretty good most of the time. You asked about my surgeries; I've had a colon resection and LN dissection (it first came back for me in lymph nodes.)

Now, a word of advice: get copies of ALL lab, CT and surgical reports, as well as CDs of your scans and keep them in a binder. There is no one who will pay as much attention to your case as you. Even the most caring of docs is pressed for time. (Perhaps you have already done this, but I found out the hard way that the oncs don't pay so much attention -- it isn't him/her whose life is on the line.)

Also, use this forum a lot. There are the most unbelievably knowledgable and caring people here. If you haven't had surgery yet, you'll want to search the forum for "cimetidine". Don't be shy about asking lots of questions. Also, be sure an make the subject something like "Question about peri mets", you'll probably get more replies. In fact, you might want to go back and edit your original post. Old-timers will often skip a topic unless they know there is a question inside...

Hugs!

User avatar
pollo65
Posts: 1564
Joined: Thu May 20, 2010 3:11 pm
Facebook Username: pollo2
Location: central valley, calif

Re: microscopic peri mets

Postby pollo65 » Wed Jan 28, 2015 11:44 am

The first scan to show anything after my first remission showed a cluster of Peri mets. Iwas put on folfox and avastin and they did not show up three months later. Never know for sure why it worked (was told it probably would not) but it did. This disease is very fickle, goes where it wants and it's often knocked out for reasons unknown. You just learn to be flexible and go with the flow.
Pollo 65
CC 1/6/09
r. hemi-colectomy 1/7/09
32Ln biopsied, 28 positive
met to aorta
chemo 12 rounds
done 9/09 3 scans clear
1/11 1 met to aorta
micro cluster to peritoneum
4/11 / 9/11 scan clear
4/12 scan clear
10/12 scan clear
Iri+avastin
chemo break

jillbugs4110
Posts: 266
Joined: Thu Jul 31, 2014 3:36 pm

Re: microscopic peri mets

Postby jillbugs4110 » Wed Jan 28, 2015 11:59 am

Thank you so much for your time ladies you have been such a gift to me here yes it is overwhelming and scarry at times....I have just started to take charge now amd ne my own advocate if not you are just a number and a dollar to the many docs ive seen. If I had it to do over knowing what I know now I would have studied to be a cancer doc would never marry or have kids and dedicate my every moment to helping each patisnt even in chemo there is not a person there that I dont pray for I have met ghe kindest most loving most real people with no bs because they are faced with this fn terrible disease,,,,,,, I hope we will see a day wo cancer......
Live One Day At A Time
I Abandon myself to God
46 6 yo.....9yo...
stage 1V liver mets :-(
my one prayer to got to sustain me to raise my two babies this is my only wish then take me out if needed.


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