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Posted 7/4/2013 11:54 PM (GMT 0)
@ Hep93 and MamaLama...they didn't biopsy the HCC prior to transplant BUT of course after transplant, we got a pathology report that gave us a full view of the HCC as well as the cirrhotic liver. I guess I will review the pathology report again and see if it mentions the word "differentiated".

Is the pathology report a good way to to get a better idea if there is any spread beyond the liver? I guess my question is...if the HCC would of metastasized beyond the liver, would there be any evidence of it in the vessels, etc? Or can HCC spread without any type of evidence in the pathology report???

Post Edited By Moderator (hep93) : 7/4/2013 9:02:45 PM (GMT-6)

Posted 7/5/2013 3:06 AM (GMT 0)
Why so fixated on this? I've told you--they scanned her head to toe prior to transplant, and the tumor was too small to have metastasized. LET IT GO!

Hugs,
Connie
Posted 7/5/2013 12:22 PM (GMT 0)
My mom was due for a chest CT in April. Two days before she was due for her chest CT, she had her liver transplant. Prior, there were 2 suspicious nodules in her lungs that they were keeping their eyes on. She even had a Pet CT scan in February that did show one of the nodules lit up with an SVU of 2.3!!! I asked them after transplant to give her a Chest CT but they said she will have it at her next appointment in August. I can't help but worry what the chest CT will show. The lung nodules are what make me worry that the HCC spread. I am convinced that the size of the HCC doesn't make a difference...a small HCC tumor can metasize just as quickly as a larger HCC tumor. Am I wrong to assume so???

Post Edited (Worried daughter2) : 7/5/2013 6:25:36 AM (GMT-6)

Posted 7/5/2013 12:53 PM (GMT 0)
 While I understand your concern WD2 , I hope you aren't reacting this way around your mom . Your reaction can be seen as doom and that's not gonna promote good results for her medically . May be nothing more than gibberish but I firmly believe " Where goes the mind the body will follow " . Negativity intended or not has been the downfall of many patients and caregivers alike .

 Ziff 

Posted 7/5/2013 12:55 PM (GMT 0)
Hey Jane

I tuned in to read your fixation du jour. You don't disappoint.
i must say I am amazed that you have the time to agonize over your mom's every tiny deviation from "normal range". I didn't have that much time as a caregiver even when brother was hospitalized.

Take Connie's and others' advice and let it go. We can't give you the concrete answers you seek. Talk to the docs until you're satisfied.
Spend more time lifting mom's spirits. Read her a book, tell her a joke, write her a poem, go see a movie, get your nails done. Above all, put a smile on your face that she probably hasn't seen in a while.

Positivity goes a long way and will rub off on your mom.
Visit with her and stay off google! Put some quality in the time you do have left with her , however long. Trust me on this, you don't want to have the regrets that haunt some folks.

Best
Posted 7/5/2013 12:58 PM (GMT 0)
When your mother had her transplant the docs must have taken chest x rays. They did a chest x ray daily, after my transplant. They want to check for pneumonia. So your mother had to have been checked. Have you spoken to her docs, or are you just throwing this out for discussion?
Posted 7/5/2013 1:01 PM (GMT 0)
If there was any doubts or questions, she would not have received a transplant. You have to think of it that way. i agree with Ziff, stop focusing on the little stuff. The more you worry about the little things the more your mom will see it. Positive attitude and outlook on things are so important when it comes to health.
Posted 7/5/2013 2:36 PM (GMT 0)
@ David and Syxx...I mentioned the lung issue to the Coordinator in the hospital after transplant as well as the Post Transplant Coordinator. They both said she will be scanned in August.

Yes...she had a chest xray the day of transplant, she had a few chest xrays while in the hospital after transplant and had another chest xray when she was in ER last week. But...chest xray's typically will not show nodules unless they are a certain size (I think a minimum of 1 cm or bigger). So, there could definitely be something there, just not being picked up on xray. The best test for lungs is a CT scan.

No...I do not dare show my mom that I am worried. In front of my mom, I am calm, and never, ever let het see or know my concern.
Posted 7/5/2013 5:40 PM (GMT 0)
Maybe she doesn't see your concern, but in here you're just shy of freaking out. Your worrying won't help her, or you do better.
Posted 7/5/2013 6:10 PM (GMT 0)
I agree with you however, don't you see reason for my concern???
Posted 7/5/2013 7:20 PM (GMT 0)
I think what people are telling you is, we do not see a reason to be overly concerned because they do not just give out transplants. They are going to make sure there is nothing that would cause a problem, that is why a patient goes through so many tests.

If they had any questions she would not haev gotten approved for transplant. Do not over think it.
Posted 7/5/2013 7:40 PM (GMT 0)
I believe whole heartedly some concern is needed and I think we all know that proper oversight is needed . I think we are attempting to tell you you're getting a bit overboard . We care about you and your mom and it appears she is in competent hands . Yours and her doctors . Nothing is written in stone and things can go wrong at anytime . I'll try and put this into context with you leaving the hospital while visiting her . You walk out the door , Walk through the parking lot and suddenly the milk delivery vehicle for the cafeteria runs you over . You're dead . Now that was hypothetical but it COULD happen . Question is because it could happen are you no longer gonna go visit her? Silly isn't it? Your consuming time and energy on things that may or may not be a problem . Living in fear of losing someone will drive you mad . Death is inevitable and stuff happens . Living is celebrating life while we have the opportunity ( While we are alive ) .
Again look around you . Look at each person in this forum since you been here . See caretakers and patients alike who struggle desperately to get to where your mom and you are . Be thankful , Be happy . Take a moment and examine what life is like in some of our eyes and you'll look at things differently . Celebrate the positive and from what is being said you have a lot of positives in your life . Your mom isn't doing bad on the scale of life either .


Ziff

Post Edited By Moderator (hep93) : 7/5/2013 4:31:35 PM (GMT-6)

Posted 7/5/2013 8:23 PM (GMT 0)
To answer your question: NO!
Posted 7/5/2013 11:04 PM (GMT 0)
Hey WD! All of this worrying really is not good for you - or your mom. Even if you don't show it around her, believe me she can probably sense it. It is vitally important that she stay as positive as she can. Like others have said - enjoy this time with her - keep her spirits up, do things with her, make her laugh!

I had hoped that with more info, you might be able to lower your 'worry-level'. I know with me, the more educated I am about something, the less I stress about it. I just don't think anything we can say is going to ease your mind. I will try this again, however - between your mom's small tumor size (yes, the size does matter!) and the fact that it was located completely within her liver, the chances of it spreading are miniscule at best. Look at the members here at HW. One of Connie's tumors was huge - and it had invaded her inferior vena cava - still, no metastasis. In fact, I don't think anyone here has had their HCC spread.

WD, there is one thing that research has proven to be a fact - 'attitude' has an impact on healing and on survival rates. Not only should the patient strive for a positive attitude, they also need to be surrounded by it. I use The Serenity Prayer as my mantra. There will always be uncertainties with this disease - it's the reason most of us refer to the journey as a 'roller coaster', because it is. You need to learn to take things one day at a time, deal with each issue as it arises and try HARD not to seek out the 'what-ifs'!
Posted 7/6/2013 2:51 AM (GMT 0)
@ Syxx, Splashdancer, Mae, hep93 and Ziff...I appreciate your words of encouragement. I appreciate you all taking the time to post back to me. I understand that worrying is not healthy for both my mom and myself. I should look at all the positives...I should celebrate her new life...but I am scared. I am actually scared because I have experienced all the UPS and downs with my mom...and, there have been plenty of downs. Seeing her in pain, seeing her scared, seeing her cry, seeing her receive bad news...those images can't be erased from my eyes/mind. Trying to let go of the worry and fear is something I will work on, it will be a slow process, but a goal that I want to achieve one day.

I do thank God each day for the blessing he has given my mother. I highlight the positives and don't harp on the negatives or my fears when I am with her. Actually, my mother is MY strength...she is MY motivation...I could only hope & pray to be exactly like her. She has a strength and positive attitude, like I have never seen with anyone.

@ splashdancer...this is definitely a roller coaster journey :-)

@ David...I thought this is a forum where I was able to "freak out", express my feelings and ask questions??? I am sorry if I seem a little "obsessed/crazy" its just who I am.

@ Mae...I am glad you like reading/tuning into my posts. As a caregiver, like you, we experience different emotions based on what we witness and see our family member(s) go through. I know...I definitely need to stay far away from Google...it only makes things worse and adds a ton more stress and worry which, I don't need.

Post Edited (Worried daughter2) : 7/5/2013 8:54:44 PM (GMT-6)

Posted 7/6/2013 3:52 AM (GMT 0)
It's NOT who you are...it's who you've decided to be. It's your chosen identity, right down to your screen name.

I don't think you can change this on your own. You need some professional help. But you have to want the help. Do you think if you're not worrying it means you don't care? If so, that's just not true. You need to learn some coping mechanisms. I'm beginning to think that you just like the attention.

If you get an ACTUAL CURRENT concerning diagnosis, I'd like to hear about it. Otherwise, I'm done.

Hugs,
Connie
Posted 7/6/2013 4:08 AM (GMT 0)
@ hep93...although I appreciate your honesty, I think your comment above is very blunt and to be frank...very rude. Just my opinion. But again, we are all entitled to our opinions.

A forum is a place to seek advice, to vent, to ask for opinions and to share experiences, concerns and views. It's a place where we all bring different things to the table, a place where we can brainstorm and "help" each other, no matter the situation/question/concern.

Every person is unique, every person experiences things at different levels. Each of us has witnessed things at different extremes...those of us as patients and others at caregivers. I have been honest with my feelings of being worried and stressed. These are all emotions that are part of life.

Maybe my anxiety, my worrying, my fears may be too "extreme" in your opinion...and you are definitely entitled to YOUR opinion. However, to say that your "done" or that you feel "I like the attention"...those are comments from a forum moderator, that I don't appreciate.

BTW...why the heck would I seek any type of attention on a hepatitis forum? I think you need to seriously reconsider the words you choose bc those are some very harsh accusations. The only type of "attention" I seek here is help or opinions to my questions concerning my mother and her liver issues. Thank you!

Post Edited (Worried daughter2) : 7/5/2013 10:50:27 PM (GMT-6)

Posted 7/6/2013 6:00 AM (GMT 0)
I am not speaking for Connie of course, but I do want to say something. I think what might get some members frustrated is that no matter what advice or info is offered to you, you're still worrying about the same things. For example, the information and advice I gave you was solid, was based on actual experiences and in-depth research, and also from information that I've received from one of the best transplant teams in the country. And yet it did nothing to ease your apprehension. Others who have 'been there/done that' also offered very solid advice and info. We don't know everything, we're not doctors, and we don't guarantee that everything we say applies to your mom's case. However, there is a WHOLE LOT of real-life experience on this forum - and we've had all kinds of people come here, both patients and caregivers, with varied histories and all at various steps along this journey of liver disease - and your level of worrying is definitely extreme. So it gets a bit frustrating when we want to help, but all of our advice and information is for naught - because you keep insisting that you SHOULD be worrying about whatever it is. And it IS very unhealthy for you - if we didn't care, we wouldn't bother saying that. Connie doesn't need defending, but I have to say that she is a very caring and empathetic person - she was one of the members who helped me keep my sanity when things were really bad. And the reason for that is because I listened to what she (and others) told me - I took what they said to heart and trusted in their experience.

Try to have a peaceful day. :-)

Post Edited (Splashdancer) : 7/6/2013 2:15:06 AM (GMT-6)

Posted 7/6/2013 11:18 AM (GMT 0)
@ splashdancer...I appreciate all the advice, recommendations everyone here has given me, I truly do. This forum and many, many of the members have been EXTREMELY helpful in their advice and guidance. I have learned so much here...and am very happy to have found this forum.

In in last few posts, I mentioned that I am trying to let go of the worry and fear I have, and it is something I will work on. It will be a slow process, but a goal that I want to achieve.

Anyway...this is a forum for liver issues and I don't want to keep focusing on "he said/she said". I don't want to focus on negative comments. I just move forward to asking questions and continuing to get valuable advice from the members here.

Thanks :-)

Post Edited (Worried daughter2) : 7/6/2013 5:22:27 AM (GMT-6)

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