newly diagnosed

sw1500
sw1500 Member Posts: 9
in Liver Cancer #1
hi all, need a little help, i have been living with hcv and cirrhosis for years now i am a kaiser patient in fontana ca.in 2009 a mri spotted two legions on my liver dr said not to worry.In 2010 another mri showed no change one legion 6mm and the other 7 they were doin mri and ct every 6 months but in 2010 dr said to go a year to next mri.now here i am one year later 2011 one tumor is now 9cm. the dr that examined the mri said it was 6.7 but specialist says it is 9cm and that disqualifies me for transplant list.says all we can do is try and shrink tumor i feel like i got screwed my dr knew there were t shadows on my liver and watched them grow to this size should i feel cheated i am having a hard time staying positive waiting for an appointment with radiology dept

Comments

  • slg
    slg Member Posts: 200
    #2
    sw1500
    So sorry to hear your news. Keep a positive attitude and lose faith yet. There are options. Find a good hepatologist or oncologist. My hust was told in Oct 2009 that he have cancer of the liver from Hep C, Cirrhosis and that there was probably nothing that could be done. he was not in criteria for transplant either. After a CT scan the Hepatologist presented my husband's case to the team and their Interventional Radiologist felt confident that he could perform a TACE procedure to shrink the tumors; along with a cancer pill"Nexavar" and two TACE procedures he was in criteria in Sept. 2010! Dr. sent us to the University of Kansas since they have a much shorter wait list than in California where we live. Unfortunately after we were all set to leave for KC they called to tell us not to come out yet as they had bumped him down from #3 to #6 on the list there. Since then they found new tumors in January which put his status on hold. They recommended tht he have another procedure call Y-90 for the new tumors. This procedure is used to bridge the patient to transplant. Instead of chemo beads in the TACE they use Radiation beads in the Y-90. He just had this procedure done yesterday! All went well but we will have to wait 3 months before the next CT scan. If tumors are gone/shrunk then he's back on the list and will be transplanted quickly!!! That is our hope! I have found we have to be our own advocates. The internet helps to educate us regarding the different procedures and drugs out there. Websites like these are also very helpful and give support from other people fighting this disease. Best of luck to ou and don't give up!!!
  • insert clever name here
    insert clever name here Member Posts: 8
    #3
    slg said:

    sw1500
    So sorry to hear your news. Keep a positive attitude and lose faith yet. There are options. Find a good hepatologist or oncologist. My hust was told in Oct 2009 that he have cancer of the liver from Hep C, Cirrhosis and that there was probably nothing that could be done. he was not in criteria for transplant either. After a CT scan the Hepatologist presented my husband's case to the team and their Interventional Radiologist felt confident that he could perform a TACE procedure to shrink the tumors; along with a cancer pill"Nexavar" and two TACE procedures he was in criteria in Sept. 2010! Dr. sent us to the University of Kansas since they have a much shorter wait list than in California where we live. Unfortunately after we were all set to leave for KC they called to tell us not to come out yet as they had bumped him down from #3 to #6 on the list there. Since then they found new tumors in January which put his status on hold. They recommended tht he have another procedure call Y-90 for the new tumors. This procedure is used to bridge the patient to transplant. Instead of chemo beads in the TACE they use Radiation beads in the Y-90. He just had this procedure done yesterday! All went well but we will have to wait 3 months before the next CT scan. If tumors are gone/shrunk then he's back on the list and will be transplanted quickly!!! That is our hope! I have found we have to be our own advocates. The internet helps to educate us regarding the different procedures and drugs out there. Websites like these are also very helpful and give support from other people fighting this disease. Best of luck to ou and don't give up!!!

    im new to
    i just found out about my liver cancer and it comes from the same thing as you. i have met with an oc doc and got sent to see another doc about doing Radiofrequency ablation. with out ding it i am allso not good for the transplant, doing it makes me good for the transplant list, i meet with the tp doc end of this month and will have Radiofrequency ablation done begining of may. check in to it or have your doc check in to it, its not a cure but it kills the tumor, you can do a search on it and find the info, good luck and dont give up the ship just yet,
  • sw1500
    sw1500 Member Posts: 9
    #4
    insert clever name here said:

    im new to
    i just found out about my liver cancer and it comes from the same thing as you. i have met with an oc doc and got sent to see another doc about doing Radiofrequency ablation. with out ding it i am allso not good for the transplant, doing it makes me good for the transplant list, i meet with the tp doc end of this month and will have Radiofrequency ablation done begining of may. check in to it or have your doc check in to it, its not a cure but it kills the tumor, you can do a search on it and find the info, good luck and dont give up the ship just yet,

    newly diagnosed
    thanks for comments, i have a appointment with radiologist Thursday for a consultation.
  • tigerjack
    tigerjack Member Posts: 18
    #5
    sw1500 said:

    newly diagnosed
    thanks for comments, i have a appointment with radiologist Thursday for a consultation.

    Me, too
    Recently diagnosed w/ Liver cancer and waiting to meet with the tumor board on Apr. 25. I'm a recovering alcoholic and have had a long-running chronic Hep B so it would be my liver! Also been dealing with HIV for 30 years so I know keeping a positive attitude is half the battle. Let yourself go through whatever emotions come up -- fear, anxiety, etc... all come and go. let them pass and get on with living!

    You say you feel cheated. How old are you? At best this is an awful hassle, and at worst... well, it does clarify one's mind and push you to think about priorities, what you really want to do in this life.

    good luck and stay in touch!
  • sw1500
    sw1500 Member Posts: 9
    #6
    tigerjack said:

    Me, too
    Recently diagnosed w/ Liver cancer and waiting to meet with the tumor board on Apr. 25. I'm a recovering alcoholic and have had a long-running chronic Hep B so it would be my liver! Also been dealing with HIV for 30 years so I know keeping a positive attitude is half the battle. Let yourself go through whatever emotions come up -- fear, anxiety, etc... all come and go. let them pass and get on with living!

    You say you feel cheated. How old are you? At best this is an awful hassle, and at worst... well, it does clarify one's mind and push you to think about priorities, what you really want to do in this life.

    good luck and stay in touch!

    newly daignosed
    i am 46 years old, i feel i am getting screwed because my doctors have been watching these legions since 09 one 6mm the other 7mm.

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