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cablecargal
New Member


Date Joined Apr 2008
Total Posts : 7
   Posted 4/21/2008 12:54 AM (GMT -7)   
Hello,
You all are so supportive here that I thought I would ask: I was diagnosed w/ cirrhosis on 10/06 and have never drank again.  I'm taking Xifaxan but haven't taken the Lactulose yet that's sitting in my apartment (too scared of side effects).  Stopped most of the diuretics, too.
 
A month ago, I went for an ultrasound for pain due to what I guessed might be gall stones.  They found a huge "tumor" in my liver but couldn't tell me what it was after many, many tests and a week in the hospital.  They sent it to another's hosp's Board to review.  
 
So after waiting for a month in pain, one week in the hospital, and now waiting for two weeks, my doc, who has always seemed to dislike me due to the disease, writes this, "Board doesn't think it's cancer.  Great news.  Call me in July for another MRI."
 
I'm astounded.  Besides the blatant disregard for my feelings, he never says what it is!  Does anyone know anything about this in cirrhosis patients?  I've buried my head in the sand until now about my disease because I've been alone through all the hospital and doctor visits, and all the procedures.  I'm so glad I found this site; I hope this post is proper.  Thank you.

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 4/21/2008 3:34 AM (GMT -7)   
Hi Cablecar gal and Welcome to the forum

I also was diagnosised with cirrhosis in January of this year and have found in reading and doctors that we are at greater risk for developing liiver cancer, am so glad that you are not having to deal with that diagnosis too. I am unaware of the causes of non-cancerous tumors in people but are people here that have more experiences in that area than I do.

I do hear you saying though that you are having problems with your doctor. Have you ever considered seeking another opinion or another specialist in your area? I am a great believer in being active in my health care. This is my life and my choices and the medical people are there to assist me physically and communicate with me. It might be helpful to contact your doctor and ask for a consultation appointment then go armed with all your questions that you want answered. Write them down before hand so that you don't get overwhelmed and forget ones that you need answers too. I find it helpful to write down answers too. I have a tendency to "get stuck" on some of the answers and not hear the rest so I have found that helpful. If you doctor does not have consultation appointments them ny best suggestion would be to seek another. It is so important to be able to communicate with the people that are directing the course our lives are taking that if for ant reasib tget were unable to communicate with me I would find someone that could.

I hope this is helpful and please keep us posted.

Lucy

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/21/2008 5:35 PM (GMT -7)   
Hello Cable car gal, Welcome to HealingWell.
With that name do you happen to reside in San Francisco CA?
As far as the tumor. It is common for liver disease patients to develop liver cancer. I am not trying to scare you but you definitely need to get a second opinion on the cancer. Get a copy of the MRI or CT Scan ...what ever it was that showed the tumor and take it to another specialist in liver cancer.
They told us my husband's wasn't cancer either.... for 4 months........it was.........it wasn't taken care of soon enough and he ended dying about 17 months after it first appeared on on a MRI.
If in fact you live or are being treated in San Francisco please email me. I have lots of information about some San Francisco doctors and hospitals.

Take care........thoughts and prayers...........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


cablecargal
New Member


Date Joined Apr 2008
Total Posts : 7
   Posted 4/22/2008 1:13 AM (GMT -7)   

Hello Lucy,

I thought about your post at lunch today, and went and bought the book, "You The Smart Patient - An Insider's Handbook for GEtting The Best Treatment."  I haven't started it but a few pages but I will take your advice and make a list of questions.  I can never think of anything to ask when I'm there, nor can I remember a thing he's told me once I hit the concrete.

I'm so exhausted but I thanked Ms. Grandma and wanted to thank you too.  I will keep in touch.  I've learned so much already by reading through the older threads.

Thanks to all

Christina


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/22/2008 3:30 PM (GMT -7)   
Christina, hi and welcome to HealingWell. I agree with the others, get a second opinion. Take all your test results and radiology reports as well as all xrays, MRI, and CT Scans with you. Do not hesitate at all. My mom had liver cancer for 2 years before her Internal Medicine Dr told her. After reading all her test results (after the 2 years) I discovered that her Dr knew and never told her. She immediately went to Moffitt Cancer Center and they confirmed it after new MRI and biopsy was performed. She found out in March and passed away in December of 2007. How sad that it took 2 years of possible treatment away from her and that she died after only 8 months. Please get a second opinion from a specialist so you won't lose any time of treatment if it does turn out that you are positive for Ca. There are people here on this forum that have successfully beaten Ca so it can be done.

 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


cablecargal
New Member


Date Joined Apr 2008
Total Posts : 7
   Posted 4/22/2008 8:16 PM (GMT -7)   
Hi Shelly, and thank you. After today's phone doctor's visit, where he told me that I just had a tumor board at UC look at it, and they said to just wait. They don't "think" it's cancer. Wow. I can't believe that that's what I should do, but he sounds right. Even if I don't trust his judgment (he said it could be uneven blood flow), if UC looked at all the test pictures and told me to just wait until July to call back to schedule another MRI, then I guess I'm just worrying for nothing.

Just signed up for Mindfulness through Meditation - to help pain patients from Kaiser. I took it last spring, and it really helped. I guess I'll have to practice patience for three more months.

Any suggestions on reading material for me in the interim? Besides this new, wonderful place for me. Thanks All!

JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 4/22/2008 9:45 PM (GMT -7)   
Hi Christina,
Welcome to the forum. I trust that it will be as much of a blessing for you as it has been for me. It really helps to have others with whom you can relate while dealing with this disease.
I just wanted to toss my two cents in regarding tumors. I am not an expert by any means, but I have had Hep C for a lot of years, I am experiencing many symptoms, and am moving up the list for a liver transplant.
My Dr. does a MRI on me every 3 months checking for a tumor. His explanation to me is that with liver disease there is a high incidence of tumors occurring. Most do not become cancerous and most do not migrate beyond the liver. In my case, since I am on the transplant list and just a few MELD points below the transplant trigger number, a tumor would move me up the list immediately without too much increase in health danger.
I strongly agree that if you are not getting the answers that you need or do not have a satisfactory Dr. relationship, you should get a second opinion. I suggest that you try a different clinic to avoid any prejudice due to close ties within a single clinic.
I wish you well in your journey. Say hi to Tiberon for me if you get over there for lunch.
John (former SF resident and Russian River rat - Cazadero)
If I weren't having so much fun with you guys,
I'd love to be out sailing on Long Island Sound
Woodmont on the Sound, Connecticut


cablecargal
New Member


Date Joined Apr 2008
Total Posts : 7
   Posted 4/24/2008 12:11 AM (GMT -7)   
Hi John and thanks.

I've had an MRI every 3 months, too. One marijuana doctor thoughts that the Kaiser doctor was crazy for subjecting my body to the radiation.
How do I know about these transplant lists? You mentioned that you've had Hep C for a lot of years; have you been on for a long time? I need to do more research on that.
I am so worried about that prejudice of care if my doc finds out I tried to go over his head; esp. since there's no one over his head right now. I can't afford any medical care but my main Kaiser right now. Maybe there are free clinics w/ hepatologists or liver specialists?
I'll wave over at Tiburon for you (my ex-boss lives in his mansion over there!) hee
Thanks all and good night.

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 4/24/2008 3:14 AM (GMT -7)   
Christina

It is very possible in an area as large as yours (I am assuming somewhere new SF) that there could be specialist at a free clinic. Your local Health Department should be able to provide you with information on all the free clinics in that area. Also possibly you might be able to get some information from the agency in your state that gives medical cards to low income people. Here it is the Department of Health and Human Resources and in some states the Department of Families and Children. They have info regarding free medical services for their clients that due not qualify for state medical benefits. Just thought that this info might enable you to make a list to call for specialist care without a lot of leg work.

Have a wonderful day

Lucy

JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 4/24/2008 10:35 PM (GMT -7)   
Hi Christina,
Just a couple of things before I go to bed and perhaps to sleep (my time is upside down so I'm often up all night).
My understanding of the MRI, Magnetic Resonance Imaging, is that it is more like a magnetic-based sonar than the radiation of X-rays, which depend on radioactive isotopes. So while technically it is radiation, like radio transmission is radiation, repeated MRIs are not a fraction of the danger of repeated X-rays.
Regarding the transplant list, the official organization is "the United Network for Organ Sharing, or UNOS, which sets organ allocation rules under contract with the federal government." Their website is http://www.unos.org/.
In my experience, one is placed on the transplant list when blood test scores are calculated to a MELD score, a statistical score that estimates the chances of a patient surviving the next three months, and when the patient has been pre-screened for other health problems and addiction potential. Donated livers are offered to the patients on the list with the highest MELD scores. The liver is either accepted or passed on down the list, depending on the condition of the liver and blood type. It is a very expensive operation, over $400,000, so the process is very serious.
I have been on the list only a short time and am low in ranking since my MELD score is 13, and 16 is when they get serious (I think MELD scores run from 6 to 40).
You may want to find your local chapter of the American Liver Foundation and visit some support group meetings. Depending on the group, many are well-run and helpful like this forum, with much to share about local resources in your area. That might give you an idea of where to find helpful professionals in your area.
Regarding Lactulose, I have had no side-effects other than the twice daily trip to the head.
I'm sorry that you have to face this without much time to prepare. I've had plenty of time to think about it since I was first diagnosed in 1978 with Hep C, then called 'Non A, Non B Hep'.
Please make sure that you let the forum know how you're doing -- both emotionally and physically. There are many caring, experienced members who will help in any way possible in this trying time. If you need some guidance, let 'Pink Grandma' know, and you can depend on '1Shelly1' for direction on medical resources.
Keep in touch with the forum and keep the faith. There are many success stories from people who initially thought that their world was going dark.
Be well, John (missing Knob Hill)
If I weren't having so much fun with you guys,
I'd love to be out sailing on Long Island Sound
Woodmont on the Sound, Connecticut


cablecargal
New Member


Date Joined Apr 2008
Total Posts : 7
   Posted 4/24/2008 11:54 PM (GMT -7)   
Lucy,
What great information - I'm starting right away. I am in San Francisco; which should be a plus. Thank you so much. Every night this week, I couldn't wait to get home to hear all the new hope from this site and all of you. Thanks again. I have really felt so alone b/c I haven't told a single person for the last 18 months, that I'm sick. No one in my family or at work know - and it's so difficult sometimes. Most of the time, it's the best decision but sometimes it gets overwhelming not being able to talk about it.

I did go to my new class at Kaiser tonight - Mindfulness w/ yoga for people w/ chronic pain.
I tried to talk to Kaiser's social worker but that was just to tell me to forget about disability.
Well, thank you all so much again and an early "Happy Friday" to all! :)

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 4/25/2008 1:23 AM (GMT -7)   
Why were you told to forget about disability? I was told with all my medical problems. Ranging from encepalopathy-to -bunions and arthritis in between. Plus the ((((((disiese))))).
which people seem to believe is contagious (even over the phone) . They did'nt see any reason why I should not qualify. Check with someone else. june

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/25/2008 11:09 PM (GMT -7)   
Lucy, just wanted you to know that I have successfully beat liver cancer, thus far.  I had a HUGE tumor in the right lobe of my liver.  It had actually metastasized to the inferior vena cava and the Shands docs were treating it as a death sentence.  Since I thought I might need a transplant, I went to Mayo.  At Mayo, they take a team approach, so I have been seen and treated by a radiologist (chemoembolization and TheraSphere treatment), a hepatologist, and a liver surgeon and his P.A.  Last May, I had the entire right lobe of my liver removed, after the tumor was shrunk and killed (including the metastasized part.)  Unfortunately, I have developed 2 incisional hernias, and am getting ready to have the 2nd one repaired in May, but no signs of cancer recurrence.
 
It looks as though your tumor may be benign, but in case it isn't...I want you to know that with the right medical care, you CAN survive!
 
Hugs and positive thoughts,
Connie

cablecargal
New Member


Date Joined Apr 2008
Total Posts : 7
   Posted 4/26/2008 2:08 AM (GMT -7)   

Connie,

 

You have a great positive attitude  I wonder if they tell you how big "huge" is?  For some reason, I keep remembering the number "seven" being said but who knows!

 

Your message reminded me that they told me dozens of times which quadrant mine is in, and I can't remember.  I become braindead when I speak to him.  He told me it was probably just uneven blood flow.

 

Your message leaves me to "Google" all the terms, but that's why I am so incredulous of this site.  I only wish I knew sooner.  I've done more this week from ideas from here than I've been since diagnosed.

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