CSN Login
Members Online: 14

MIE over Thanksgiving- Recurrance ALREADY??

Ucsf_smile's picture
Ucsf_smile
Posts: 81
Joined: Sep 2011

Hi friends-
I've been MIA from this board mostly because we've been focusing on my mom's recovering from MIE. They had clean margins and all 22 lymph nodes came back clean. MIE was performed over Thanksgiving.

First post-op PET was 2/6/12, where the doctor noticed some "areas of concern" but thought it may be post-op inflammation. At the time her CEA (From blood test) was 9.0 (normal range is <3.8). This was very concerning, but the doctor said it's better to give it a few weeks and re-test.

Well, my mom has been complaining of abdominal and lower back pain. She's had 3 (THREE!!!) stretches since surgery and definitely been a trooper. During the last stretch (3/5/12), the doctor said to make an appt. to see him for the abdominal pain. We didn't hear anything, so today she went to the ER where they did an abdominal CT and saw "some spots."

They sent her home with an urgent request to her primary care doctor and oncologist. Now we are on pins and needles on we can call the office on Monday. I guess all signs point to recurrence. Have those that have been on this board for awhile seen recurrence occur so soon (<2 mos) after MIE?

Thanks for your input!

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

I'll give you the quick version of my journey. At the age of 42, I was diagnosed 2/28/11 at T3N1M0. Did nine weeks of ECF chemo with was incredibly effective. No hypermetabolic activity noted on my post chemo/pre op PET/CT. MIE was at the well regarded UPMC by the equally well regarded Dr. Luketich on 7/1/11 where everything went great. I had three out of 38 nodes come back positive so I had post-op chemo (ECF again) and October 27th, I had my first post-op PET. Sadly, I had some nodes come back hot. This was later confirmed by an EGD and EUS with FNA. I went through three rounds of Taxitare and sadly, the cancer continued to grow and spread into more nodes. In early Feb of this year, I was restaged at 4B. I just go to show, you can have the best of care and it can happen. I am now on FOLFOX chemo and doing well.

I am considered terminal but I was the minute I was born so not much has chanced in that respect. I feel great and enjoy every day. I truly hope it is nothing but I am hear to tell you, no matter what it is, you can make it together. One thing living with cancer has taught me, live every day and don't think to far ahead of today.

All my best,

JimboC

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Your attitude and spirit are refreshing! Glad you're taking every day at face value and living your life.

Keep the faith :)

Hugs & Prayers to you and the family!

Terry

Heeran's picture
Heeran
Posts: 173
Joined: Aug 2011

Jim, I was reading through your bio to see if you updated and I didn't see anything past Oct. I liked reading your post. It upset me that you had just awesome care and great response to the treatment plan and then it came back. But you have a positive spirit and I think we all need that on this board. Thank you for contrabuting

Ucsf_smile's picture
Ucsf_smile
Posts: 81
Joined: Sep 2011

Jimbo, you are such a ray of sunshine. Thanks for your words of encouragement. You have a golden spirit.

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

So sorry for what looks like an all too quick return of your mom's EC. I just wanted to add my support and prayers. Know that your family is in our thoughts.

Terry
wife to Nick, age 48
dx 05/19/11, T3N1M0
28 rads / 2 weeks inpatient Cisplatin / 5FU
THE 09/08/11
Clean Path 09/13/11

Ucsf_smile's picture
Ucsf_smile
Posts: 81
Joined: Sep 2011

All signs point to recurrence :(

Pet and CT scans 1month apart show the spots are brighter and bigger. Mom is in good spirits...
I'm so devastated. Getting mentally prepared to be a stage IV caregiver.

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

There aren't words enough to express my sorrow for your mom's circumstances.

Terry

annalan
Posts: 149
Joined: Jul 2011

My heart goes out to you and your mum and everyone else who is fighting EC. It wrecks havoc on all our lives. I pray for a cure for all cancers.

Ann
wife of Alan who lost his battle on January 31st.

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

I love your photo! Can you explain what was happening at the time it was taken? Very cute.

Jimbo - I love your comment - terminal from the time you were born. Ain't that the truth!

I'm so sorry for the possible recurrence. It's hard. We fought mom's original diagnosis but to no avail. Mom (84) was a trooper throughout her chemo and rads. Hospice began this past Saturday.

EC is truly a beast and at time seems unstoppable. Fight on!

Ucsf_smile's picture
Ucsf_smile
Posts: 81
Joined: Sep 2011

The photo is of my mom...she laughs at everything and something cracked her up at my wedding :)

Pain in her back is worsening.

She got a biopsy of the spots last week, so the results should be back soon.

Her port will be inserted on the 9th in anticipation of chemo.

Fingers still crossed and staying hopeful...

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

I can't remember if your Mom had a port the first time around. If not, they aren't too bad. I was using mine the week after for chemo and it stayed in continuous use for 9 weeks. I kept mine in because I wanted to have at least two clean scans before I had it taken out. (Unfortunately, I never even had the first one...) Your Mom will think this is nothing considering what she's already been through.

I'll be keeping you guys in my thoughts and prayers. I've been Stage IV since December and IVb since February and I am doing great. Went camping last night and cut some grass today. Tell your Mom to keep her spirits up. I honestly think that has been one of the keys to my success. The doctors tell me I'm atypical and I attribute it to God and positive attitude. This is as much a mental game as it is a physical game.

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

The picture of your Mother is beautiful. She looks like a happy person who loves life.

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

I know you are hurting for your mom. My prayers are with you.

Jimbo, We are born into the world to die. it's what we do with the time we're here that is important. Love your positive attitude. I think that's the best weapon in the war against the beast.

Hugs and prayers to you both,
Sandra

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network