Results of MRI not good

I had bloodwork and an MRI with contrast of my abdomen last Thurs. at Mayo.  I returned today for results.  I learned that the cancer is back in a "remnant" of my right lobe.  I thought the entire right lobe was taken 4 yrs. ago when I had a huge tumor, but it could've regenerated a bit.  The tumor is 3.2 cm now.  My AFP (tumor marker) was elevated last time at 19, but nobody said anything about it.  I'm kicking myself now for not calling and having them follow up on this.  Perhaps they wanted to see if there would be a change this time.  And there was.  Both the AFP and the liver enzymes were higher than before.  I know I've been feeling a lot more tired than usual lately.

I had a doctor come in and speak with me about the possibilities for treatment.  First thing is for me to have an MRI of my brain, a CT of my chest, and a Nuclear scan of my skeleton.  (Of course, all with contrast so I'll have to get the IV inserted with imagining again on both Mon. and Fri.)  Two will be done next Mon. and the last on Fri.  I expected to be scheduled to return early the following week for results and a plan.  My hepatologist and Interventional Radiologist, who treated the previous cancer, will meet with other doctors to determine the best route to take based on scan results.  I trust them implicitly.  Transplant was also mentioned (in fact, emphasized.)   If they do try to treat the tumor alone (if there is no metastasis), they want my liver to be left in condition for transplant.  I don't quite understand this, but transplant would be to cure the cancer.  I'm a little nervous that it may have spread to my brain as I've been having some unusual things happen recently (a former medical transcriptionist, I'm typing words other than I have in my head.) 

Anyway, I wanted to share this with everyone and let you know I will not be online Mon. and probably not on Fri.  Say a prayer for me or send positive energy, if you are so inclined.  I will fight hard until/if there comes a time when I have to accept what is.

I'll try to keep everyone updated as I go along.

Hugs,

Connie

I have a few choice words I'd like to say but I will hold my tongue on the forum posting.    I'm sorry to hear it's back.  Did they talk about a full body PET scan?  That's what they did when my mom was first diagnosed with her lung cancer as it was stage 3a.  That's how they checked her for mets.  Would just be one full test instead of the 3 different scans they have for you.

You are one tough chick and I'm sure you'll fight an awesome fight and show it who's boss again!

My fully positive thoughts are with you. 

Connie,

I am so sorry to hear your news. I will focus all my positive thoughts so that you will have a better outcome next week and beyond, if necessary.

Keep up your spirit and grit.

Susie

Connie,

You listen and understand.

You check in on each of us, test by test, crisis by crisis.

You keep our stories straight.

It totally _____s (imagine a word) that your cancer is back. Especially since it has been quite some time and you were really looking forward to taking another shot at the Hep C this year! (ha ha)

All this time of clean living and eating right is going to stand on your side!!! I am sure that is why you have basically beeen so well for a long time.

We have moaned and groaned, shared our feelings. Feel free to share back...we can moderate ourselves for awhile if we need ! And there are wonderful folks who help you already!

Keep us posted.

Hugs,

Carol

Connie,

I am so sorry to hear the cancer is back! I can say that you are one amazing, strong woman! I will be praying for you, please keep us posted.

Mer

(((Connie))),

We have been through so much together on this forum. In fact it's because of you that this forum is so good. Your knowledge and wisdom concerning liver disease has helped countless of members and lurkers........Now we are here for you friend. If you need anything.....do not hesitate to ask. You are one tough cookie......lady....I have no doubts that you will give it all you got give a run for it's money.

And about that typing thing.......thinking one thing and typing another.......well I do it all the time so hopefully it's just old age that's causing it.

Take care.........Lot's and Lot's of thoughts and prayers.....

Hi Connie,
I know how resilient you are, both from HW and a couple of days in NYC, last spring. If the cancer hasn't metastasized, you should make every attempt to receive a transplant. I know you will be fine.

Thanks much, Rick.

Hugs,

Connie

Connie

Thinking of you as you face this all over again.  Stay strong and all the advice you give us, it is now your turn to listen to your own advice and take comfort knowing we are all thinking of you and praying for you.  There a so many inspiring stories on this forum and Connie you will fight through again.  Stay Stong and Take Care

Krista xxx

Hi Connie,
They gave me prednisone for 7 days after the transplant, but stopped after that. At MGH they try and stay away from steroids for liver transplants, though many hospitals use them. From what I've seen on a transplant forum, kidney, heart and especially lung transplants are more likely to need prednisone.

So sorry to hear that Connie! But we're all praying for you and thinking positive thoughts as well! Maybe you'll get the transplant and feel better.....I too will say lots of prayers for you in and out of church! You have always supported us, now it's time for all of us to return the favor!!!!

Take good care of you!!

Thanks for the info, David.  I'm sure Mayo will take my steroid reactions into consideration.  Since post-transplant patients don't tend to remember much of the first two weeks in the hospital, I may be in some private, silent hell if I have to take prednisone, but hopefully I won't remember it.

To all of you, I am deeply touched by your positive thoughts, prayers, and concern.  I never expected such an outpouring.  I am very grateful to be a part of this wonderful forum and intend to continue on here as long as possible.

Hugs,

Connie

Connie,

Entocort, still a steroid, has less side effects than pred does.  So maybe that could be an option.  I don't know if they use it for transplant.  The rest of the meds will be immunosuppressants.  I'm sure others too but if the 'roids are your biggest fear then hopefully knowing David only had them for a week will calm some fears.

Hoping for the best with your follow up tests.