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Surgery, looking for hope

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Hi everyone. Yesterday was my day for surgery at Mayo Clinic. I was nervous some, but more excited than anything. All went well, the surgery consisted of sigmoid colon resection, liver left lobe resection, (one tumor remaining after Folfox and Avastin), and hopefully portal vein emolization. The surgeon has been very optomistic and said they were going for a cure. I was to go back in 6-8 weeks for the right lobe of the liver to be resected, some "mop up" chemo and if all went as hoped, it would be a miracle.

After going into the OR I woke up suddenly and was in the recovery room, no machines except standard computer w/BP, oxygen and heart rate. I immediately knew something had either gone wrong or I was still dreaming.. found a clock that showed a little over 1 hr from the time I was taken in.. then I knew for sure. Tried to find some bandaids on my abdomen or anyplace, there were none.

Shortly after I was wheeled to a regular patient room, my daughter and surgeon came in as soon as I did. As they began they saw scar tissue and on close examination found mole-size spots on the surface of my liver, at the top of my stomach and in my abdomen.. pathology confirmed the malignancy. The dr's closed me up right away, said they did not want me to go through the resection (both were going to be laparoscopic) in view of this new finding.

Later I asked how the PET, CAT and MRI that were done in the past 2-3 weeks did not show any of this, he said because they were just too small..

Thursday I go back to my oncologist here to begin chemo again. Surgeon said it is almost unlikely I will ever be a candidate for resection, but I choose to think anything can happen.

It was so sad when we pulled away from Mayo this morning.. it held my hope of being here for a few more years, enjoying my children, grandchildren and all that life has to offer. I can deal with chemo again, or so I think, but just need some positive thoughts, others experiences and hope... I feel guilty asking, you all have so much on your own plates; have been feeling wonderful for 9 mos after stopping chemo and have so very much to be thankful for.

If any of you have time to respond it would be wonderful. Thank you and love to you all, Joyce

Love2Cats's picture
Love2Cats
Posts: 127
Joined: Dec 2010

I send many positive thoughts and wishes for you and your family. It's understandable that you felt so disheartened after you awoke.

I wish I could share some positive experiences with you, but I am just a rookie on the cancer roster.

Take care,

Sandy

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

and will see how the things use to change suddenly very often! .
There are many examples here living and controlling their tumors with no surgery!
I pray for it!

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

i have had 2 liver resections....no one knows when they might become possible....

do NOT give up hope.....3 surgeons refused me....

hang on to hope and pepe is right.....even without surgery there is always hope

mags

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Thank you for the encouragement. And for reminding me there is always hope. Hugs, Joyce

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Hi Pepe, I pray for it too.. thank you for the reminder... just what I need this evening. Hugs, Joyce

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Sandy, thank you for your quick reply. Doesn't matter how long you have been here, you have made me smile and feel better. Hugs, Joyce

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I read your reply on my post and was touched by what you had written - then catching this post I'm sorry to hear of this latest development.

I missed liver resection as well and had to do RFA and CyberKnife to knock my liver tumor out...perhaps something like this would be something for the future.

Too many times, I've read here where the situation was dire and months later, the person got a resection and etc.etc.

I feel your disappointment and can only imagine how you felt as you drove off the parking lot at your facility.

Wishing you well and will be watching over you now as your journey continues.

-Craig

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Craig, thank you. With all you have you reach out to help others. That's what makes the people here so special. Thanks for your note, and for watching over me! Am feeling better already.. warmest regards, Joyce

mom_2_3
Posts: 965
Joined: Nov 2008

I am sorry that surgery didn't go as you expected. I am sure it was disheartening. Your request made me think of a particular blog that I have read. The young woman that writes the blog tells a very compelling story of the extensive nature of her disease and the path she took from diagnosis about 6 months ago to this past week when she had sutures removed resulting from an extensive surgery that she just had. She says in one post that:

"Despite feeling strong and healthy in all of the days leading up to my surgery date, there was an extensive amount of disease lingering in my body. A thousand baby tumors on my small intestines, cancer in my belly button and spleen and gall bladder and right ovary, and even a tumor in my rectum. In 11 hours of surgery, Dr. Sugarbaker performed 17 different procedures to get me cancer-free."

The young woman's doctors are Dr Lenz (oncologist) and Dr Sugarbaker (surgeon) and her story is amazing. I think that her story can give hope to all of us, regardless of our staging and present situations.

Check out her blog at http://www.wunderglo.com/.

I will keep you my thoughts Joyce,
Amy

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Hi Amy, I will read her blog. These are the things that help me so much. I know of Dr. Lenz.
My surgeon at Mayo Clinic was incredible. He was so compassionate to me and my daughter. 17 procedures and 1 thousand baby tumors are almost impossible to believe. But I do. :) Thank you for writing. You, too, have given me hope.Warmest regards, Joyce

Friendinpenn's picture
Friendinpenn
Posts: 70
Joined: Oct 2010

Joyce, I was once told I may only have up to a year to live and now it's been over three...

Yes, I've had some rocky roads to deal with, but I'm still here and I know I will be...and you will be too!...

I will pray for your health and longevity...

Your "friend-in-penn"

Jim

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

I'm glad they were wrong about you, too. Like so many of us. I have often read your posts and the remarkable fight you have fought. It was so nice of you to write to me tonight. I feel like a giant hot air balloon who had all the air let out. :) But thanks to everyone here am feeling brighter. Thank you for your prayers as well. That means so much. Thanks my "friend in Penn". Joyce

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

I am so sorry that your surgery didn't happen as expected and that the damn cancer has showed up like this. It must have been a real surprise in the OR for them. And you are so right ... anything can happen ... as we have all seen.

I am sending you some good and positive vibes that the chemo will do it's job and you can get back to the OR and have that surgery that was planned. Maybe this was just a practice run. Try to stay positive. HUGS

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

The surgeon said they had absolutely no clue this was going to be the case. He said everyone was surprised. Thank you for the good and positive vibes, I know after I see my onc Thurs. he will make me feel more secure in moving forward. He always does. You may be right, perhaps it will turn out to be a practice run... HUGS back Lori. Joyce

Lovekitties's picture
Lovekitties
Posts: 3341
Joined: Jan 2010

So very sorry for this disappointment and the fact that it has knocked you back emotionally.

Don't ever feel guilty for asking any of us here for what you need. While our own plates may be full, they are never too full to be able to offer help to one in need of it.

I know that the findings have to have you concerned, but you can be sure that anything is possible as long as you keep up your spirits and doing whatever you feel best as far as treatments.

This is a setback for sure, but it is just possible that a year or so from now you will be telling someone new here about how you have beaten it back.

Hugs,

Marie who loves kitties

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

I appreciate your encouragement Marie. Sometimes, as I'm sure you know, things are so overwhelming you forget the things that matter. All I could think of was negative things..rather than the important ones like keeping up your spirits.

Am so thankful for everyone's words tonight, for their love and friendship. And I love kitties, too!
Hugs, Joyce

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

So Sorry hang in there. I am praying for you.
Tom

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Tom thank you for taking the time to write to me.. :) So appreciate your prayers. Joyce

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Keep searching and do not give up! There is a surgeon out there that just may find you a candidate for resection and you know, after this round of chemo, you just may be eligible.
I also know some centers are more aggressive than others...some would take you and do the "debulking" surgery and HIPEC while others may want to do some systemic chemo and then see.
Do not let this set you back....keep on fighting.
Hugs,
Marie

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

First so sorry to hear you news. I can also feel your pain. Please try not to be discouraged, get your body strong and keep fighting for those grand kids!!

I am wondering, did your ONC say that mole size tumors can't be picked up on a pet or ct scan? That is kind of scary.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

First so sorry to hear you news. I can also feel your pain. Please try not to be discouraged, get your body strong and keep fighting for those grand kids!!

I am wondering, did your ONC say that mole size tumors can't be picked up on a pet or ct scan? That is kind of scary.

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Nana, this was the surgeon, and he did not say anything about what size can or cannot be picked up. However, he was careful to say these were malignant "spots", not tumors.

I asked him how long he thought they might have been there, he said probably about 3 mos. They had the path report so perhaps he felt comfortable saying that since he knew what they were.

When I asked about why the PET scan would not show them he looked at me, sort of shook his head and said "I really don't know". I also had the newest/latest MRI about 3 weeks ago, in fact Mayo had me sign a paper/consent saying that I would agree to them using it. It is supposed to be the most state of the art MRI there is. And it showed nothing. I do know he said there were quite a few of them in the abdomen. At first they thought it was scar tissue.

This is really all I remember. Joyce aka Nana

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Joyce,

I'm so sorry of the new findings and that you weren't able to go through with the surgery as planned. I can only imagine your disappointment in not getting the surgery and having to go back to the drawing board and start over again with chemo. Sending cyberhugs to you- I wish I could make it better for you.
I have been doing chemo nonstop for the past 2-1/2 years & I am still plugging on, blood counts are good, and I still have the "I can beat this thing" attitude.

You hang in there & I will be thinking of you-
Lisa

AnneCan
Posts: 3692
Joined: Oct 2009

Joyce,

I am so sorry for this. It must have been a huge disappointment for you. There are many roads to survival, + now it seems you are on a different road, but that doesn't mean you won't get back on that road that you just took a detour from. Warm hugs are headed to you now!

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I too am sorry for the disappointing news to you, I was told that 1 in 6 Stage 4 came out OK by my Dr......I don't figure that he has really been around me long enough to know that I don't go down that easily, and neither do you.....
OK, both of us know that someday we're gonna die, well, we're all going to someday. Now, what we have to do is see just how long we can circumvent that situation and how fast we can get the ball rolling on another plan for you.....
There is someone out there with hope for you...get on the internet and go to all cancer centers in your surrounding area or states, get numbers and start calling them...Tell your story in short and ask for options and don't take no for an answer....Lots of time Drs will take new patients on if they feel an enthusiastic person who is willing to "give it he!!" when fighting for their life.
Put it out in here and get people to pm you with phone numbers and short stories of why this number may help you in your search for treatment thats right for you....
You are in a particular situation that this forum could possible help you with in phone numbers and reasons why to call these Drs and Oncologists.....
Put it out in here on its own post and see what you get back...It most certainly will give you more options and in turn more hope....and thats all we really go on in....love to you young lady.....chin up......Caseys at Bat.........buzz

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Buzz, thank you again for the excellent advice and encouragement.. I will do just what you suggested. Tomorrow I see the oncologist and then can come up with a more solid plan, knowing that it cuold change any day.

Thanks for calling me a young lady too... that was the nicest thing, ha!! I am a grandmother of 5, feel young but that's thanks to makeup.. Love to you! Joyce

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

dear Joyce i'm so sorry to hear about all of this .i will be thinking about you and i just feel that you will be here for a long time to come lots of hugs for u Tina

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Tina, thank you so much.. how is Jorge? I think of you and keep you in my prayers all the time. xox Joyce

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

Your disappointment must be overwhelming about now. I'm so sorry the surgery did not go as planned. Get a game plan going with your doc and then do what was suggested here, start researching other docs that may be able to help you reach your goal.

A blog I follow of a guy out of Texas experienced something similar, went in for liver resection only to find tumors on the opposite lobe, surprise to the surgeon, open and close procedure. He restarted chemo and a year later is feeling quite well and working full time.

What I guess I am trying to say is all is not lost, a big disappointment yes, so have a good cry and get your game plan going.

Big hugs to you - Tina

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

to hear this news joyce. this brought me to tears.i to am just starting on this road and in my mind the resection is going to happen.i know you are devistated but just keep hangin in there,as i read the others posts in this thread there is still hope...Godbless...johnnybegood

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Johnny I am sorry if I made you sad, keep the attitude you have about the resection. My situation was unique, I found out this morning. Someone asked on the board last night how could I have these "apots" and the PET scan did not pick up on them. Found out.

The oncologist at Mayo Clinic called me today to see how I was. She sort of was not personally involved with me after I connected with the surgeon. She had the report and called to follow up. I asked her a ton of questions, one being how could they not have known... the "spots" are what she called nodules and there are many of them on the surface of the liver, stomach and in the abdomen. Evidently they are the size of "grain of rice", often blend in with the wall of organ - because they are so tiny they cannot absorb the sugar that would cause them to "light up"... she said everyone was shocked when they found them, at first they even thought it might be scar tissue.

So please, this is not your everyday situation by any means. If I had not had these nodules my surgeon would have gone perfectly and I would have been "cured" according to Mayo Clinic.. at least for a while if not for the rest of my life.

There are many people here who have had resections and more than one. There are people who have not had any and some of the posts today are talking about 5+ years and surviving. You are going to be one of them.. and so am I, if I have my way.

Thank you and bless you as well. Hugs, Joyce

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Tina, thank you.... my cry is over for now. :) Thanks to a group of wonderful, encouraging group of "family", including you. I'm ready to move forward and start the battle over. I'm going to be ok... hugs, Joyce

drmrgirl47's picture
drmrgirl47
Posts: 129
Joined: Mar 2004

Hi. Don't give up hope. I will say a prayer for you. Peace.

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

For your prayers... I am not giving up hope. Everyone here, including you have gotten me through once again. Love to all, Joyce

Erinb
Posts: 295
Joined: Apr 2010

Joyce, I'm so sorry. Your news is beyond disappointing. There is still hope! The cancer could go away with treatment. It has happened. I continue to read inspirational stories of people who have beat cancer. BELEIVE. It can be done.
Erin

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Hi Erin, thank you for your encouraging note. It means a great deal to me. Am not about to give up hope...thanks to all of you today (tonight) is much brighter. Hugs, Joyce

LindaJS
Posts: 20
Joined: Feb 2011

I cant imagine how awful it must have felt to drive away from hospital without your surgery - Im so sorry. Im only new to this journey but it seems like most people who are getting a surgery/treatment/good result have been told at least once that they probably wouldnt - yet there they are. I have no doubts that you will get back there.

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Hi Linda, nice to meet you. You are right, so many people that were "inoperable" are now candidates for resection or have had one. It is truly amazing. My situation has changed but not being able to have the surgery is not going to be a death sentence for me. I saw my oncologist yesterday and start chemo Monday.. Folfiri and Avastin added in a few weeks after my incisions have healed.

Take care and keep up the posting so we know how you are doing. Have a nice weekend! Hugs, Joyce

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