Surgery, looking for hope

Nana b said:

Joyce
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.

What the surgeon said
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

Buzzard said:

OK.JOYCE ......
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

Thank you again
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

johnnybegood said:

so sorry
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

There is hope
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

tina dasilva said:

I'm so sorry
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

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

Erinb said:

Joyce, I'm so sorry. Your
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

Erin
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 said:

I cant imagine how awful it
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.

Linda thank you
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