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Thread: Liver Cancer ? Why me ? Why so expensive ? What to do ????

  1. #1
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    Unhappy Liver Cancer ? Why me ? Why so expensive ? What to do ????

    In March 2018, I had delayed going to the doctor with a ‘blood in poo’ problem. Fortunately once seen, the GP sent me to have a colonoscopy with an orange sticker on the notes (be seen within 2 weeks). During the colonoscopy, it looked really messy and bloody as they took the camera up. They took a biopsy and they had me return to see the consultant who, after having another look, said I should go to see a surgeon. I had to come and visit my family in the Dominican Republic, because I don't have many resources and here medical studies are cheaper.



    The surgeon had another look and said although no cancer was shown on the various biopsies, he thought it looked cancerous. The best way forward was to chop a section of the colon, I was able to raise the money with my family and use my savings so we arranged for an operation as soon as possible, then I went in for the operation and was made ready. One of the most distressing things that happened was that two ladies came in with a pen and asked what side of my belt would I like to have the bag? No-one had told me of any possibility of a bag after the op. The evening before the operation I had a CT scan, and that showed unfortunately what was described to me as ‘two cricket ball and two golf ball size areas of cancer’ on my liver. My colon surgeon said the liver was inoperable in its present form. The colon surgery was cancelled, as I needed to start chemo as soon as possible to shrink the tumours. All this seemed to go over my head and I really felt that I was going to come through, plus I have accumulated so much medical debt that I am going crazy, unfortunately I do not come from a family with many resources and we have had to apply for loans from the bank to cover medical appointments, medicines, etc.


    After a few days we went for the first chemo treatment and came home a bit depressed – five people went through all the nasty things that chemo does to you, and no one said about the good results that we could expect. The chemo went to plan – and did not affect my immune system or my bloods, which amazed the oncologist and nurse. My CEA level came down dramatically and that seemed to please everyone. Near the end of the fourth session, I had another CT scan to compare with the original. Both the surgeon and the oncologist telephoned me the same day as they were excited that chemo was working. They gave me the sizes – in effect the tumours had reduced to 12.5% of their original size. I was still not suitable for operation, as one piece was still attached to a main blood vessel, but the chemo was still working.


    I went to the clinic for an MRI scan and saw my another doctor, who said, ‘Yes I can do it’. This was so good after the bad start we had to the chemo, when depression reigned. All the way through, my doctor has been so positive and confident. The day for the operation was set. Not having been in hospital and hardly ever going to the doctors, all this was very daunting. But somehow this confidence that my doctor had made it seem a normal thing.


    They took 70% of the liver away to remove the tumours and a good area surrounding them. The remaining liver was not in good condition as it had been damaged by the chemo. So after I came round I was weak and fragile – I could do nothing for myself, despite the day before being fit and, as I thought, well. The attention I had in the clinic was exceptional, after three weeks I thought I was well enough to go home. I lasted two days at home.


    I was then rushed back into the clinic I was just going downhill, so weak I could do nothing. We had no more money or resources, my mother and my uncles had given everything they could and I decided to write to some friends in NYC and Florida, and ask them to please help me with the expenses, some helped me with what they could and sent me some money through PayPal and I was able to use the money here in the Dominican Republic to continue to pay for the expenses (I am eternally grateful to them). The week in hospital recovered me enough to return home and stay there, being looked after by my mother who had to give up everything else she did to cope with me.


    It took four months until I was well enough, only just, for the colon operation – quite daunting after the liver resection operation. Another colonoscopy showed that the polyp had reduced so much that on the way in, it was not seen. Now I need another operation and I'm still paying off the old debt, I don't know where else to ask for help and this is crumbling my family, I sold everything I had in the U.S. to cover some debts and now I need at least USD5,000.00 more for the other surgery and it's eating me alive, since the hospitals in this country don't have a very good reputation, only the private clinics.

    Someone has gone through the same situation as me or similar? as they have endured? at some point everything gets better? because everything in this life costs money? because saving a person's life costs so much money?

  2. #2
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    First, I'm sorry no one has answered your post before; this section of the forum isn't very busy.

    Second, it sounds like your treatment has worked out much better than the doctors expected, which is great news. Surgery itself can cause depression afterward, and you may be experiencing that. And it sounds like your doctors maybe don't have the best bed-side manners, but that can happen anywhere.

    While your treatment has cost a fortune, it would have cost much more in the US, so returning to the Dominican Republic was a wise choice financially.

    But now you want the best care you can get, and it would be good if you could look abroad for that.

    You don't say where you lived before or for how long, but I'm going to guess maybe you lived in New York? Forgive me for guessing, but it makes a lot of difference to your situation.

    If you have legal status as a resident or citizen of the US, then if you can travel, it might be a good idea to return to the US if and when you can buy insurance. It really would depend on what state you'd be returning to; some states are terrible for insurance and others are pretty good. If you'd be returning to New York, which is pretty good, here's an information page:

    https://www1.nyc.gov/site/ochia/find...mmigrants.page

    (It says immigrants, but those programs are available if you're a native-born American as well; same links.)

    This would enable you to seek treatment at a top cancer center, such as Sloane-Kettering.

    But it's definitely a look-before-you-leap situation. You wouldn't want to come to the US without a certainty of having insurance in place, and a doctor who would see you. If you'd be returning to a state with bad insurance, such as Texas, you'd probably be better off remaining where you are, especially as you have family support there.
    Last edited by GBMsibling; 09-03-2018 at 03:17 AM.

  3. #3
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    Quote Originally Posted by GBMsibling View Post
    First, I'm sorry no one has answered your post before; this section of the forum isn't very busy.

    Second, it sounds like your treatment has worked out much better than the doctors expected, which is great news. Surgery itself can cause depression afterward, and you may be experiencing that. And it sounds like your doctors maybe don't have the best bed-side manners, but that can happen anywhere.

    While your treatment has cost a fortune, it would have cost much more in the US, so returning to the Dominican Republic was a wise choice financially.

    But now you want the best care you can get, and it would be good if you could look abroad for that.

    You don't say where you lived before or for how long, but I'm going to guess maybe you lived in New York? Forgive me for guessing, but it makes a lot of difference to your situation.

    If you have legal status as a resident or citizen of the US, then if you can travel, it might be a good idea to return to the US if and when you can buy insurance. It really would depend on what state you'd be returning to; some states are terrible for insurance and others are pretty good. If you'd be returning to New York, which is pretty good, here's an information page:

    https://www1.nyc.gov/site/ochia/find...mmigrants.page

    (It says immigrants, but those programs are available if you're a native-born American as well; same links.)

    This would enable you to seek treatment at a top cancer center, such as Sloane-Kettering.

    But it's definitely a look-before-you-leap situation. You wouldn't want to come to the US without a certainty of having insurance in place, and a doctor who would see you. If you'd be returning to a state with bad insurance, such as Texas, you'd probably be better off remaining where you are, especially as you have family support there.
    hello GBMsibling, thank you for responding, I am very sorry I did not receive more support from users, but you have encouraged me and I thank you very much for your words and your time.

    Yeah, I used to live in New York, you guessed right. My friends have asked me to come back to the US, but at the moment it is not possible for me to pay for the trip or purchase insurance (I don't know what the value is yet, but I am sure I can't afford it). The ticket alone costs around USD600 and I have to have some money as I would be staying at a friend's house but I have to contribute some money for household expenses, food, etc.

    This situation has been very difficult for me and my family, I am on the verge of despair, sometimes I think it is better to stop fighting, I have bankrupted my mother, my relatives have spent a lot of money and I can no longer ask for more, it is not fair to them and I feel like a burden for everyone.

    We have tried to seek financial help from the Dominican government to at least pay for the one-way ticket to the U.S. and keep some money for medical expenses, etc. But so far the government has not responded and I really think it would be better not to be here anymore, I feel that I am a burden to everyone and my situation does not help.

    Thank you for taking the time to write me GBMsibling.


    Sincerely,

    Albert

  4. #4
    Administrator Top User lisa1962's Avatar
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    Hello asenior and sorry to hear of your diagnosis and the financial impact it has had on you and your family.

    I apologize you have not had any other responses other than from GBMsibling. This part of the forum is not a very active one and members tend to not post unless they are knowledgeable about the specific type of cancer or share a similar experience.

    While I can not offer much as far as your diagnosis and possible treatments moving forward, GBMsibling has provided valuable information regarding insurance questions and suggestions on how to address some of the financial hardships. Treatment from any type of cancer, sadly, does have financial stress regardless of where you reside. You can have the best insurance and still, due to the extensive cost of treatment, there still is out of pocket expense that must be covered.

    The only advise I can think of is to speak with your doctor, explain the perplexity of your situation and perhaps they can at least reach out to the drug company to see if there is some financial relieve they can provide in regards to the cost of the drugs that may be used. We here on the forum can not provide financial support, it is not something we do here.

    We wish you luck in your situation and hope that you can find some financial support where you live to help with the expenses.

    Lisa

  5. #5
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    Quote Originally Posted by lisa1962 View Post
    Hello asenior and sorry to hear of your diagnosis and the financial impact it has had on you and your family.

    I apologize you have not had any other responses other than from GBMsibling. This part of the forum is not a very active one and members tend to not post unless they are knowledgeable about the specific type of cancer or share a similar experience.

    While I can not offer much as far as your diagnosis and possible treatments moving forward, GBMsibling has provided valuable information regarding insurance questions and suggestions on how to address some of the financial hardships. Treatment from any type of cancer, sadly, does have financial stress regardless of where you reside. You can have the best insurance and still, due to the extensive cost of treatment, there still is out of pocket expense that must be covered.

    The only advise I can think of is to speak with your doctor, explain the perplexity of your situation and perhaps they can at least reach out to the drug company to see if there is some financial relieve they can provide in regards to the cost of the drugs that may be used. We here on the forum can not provide financial support, it is not something we do here.

    We wish you luck in your situation and hope that you can find some financial support where you live to help with the expenses.

    Lisa
    Thank you all for taking the time to read and respond to me. I have made the decision to stop treatment and leave everything in God's hand, I can't keep sinking my family with me, they don't deserve it. Thank you all

  6. #6
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    Thank you all for taking the time to read and respond to me. I have made the decision to stop treatment and leave everything in God's hand, I can't keep sinking my family with me, they don't deserve it. Thank you all

  7. #7
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    Quote Originally Posted by lisa1962 View Post
    Hello asenior and sorry to hear of your diagnosis and the financial impact it has had on you and your family.

    I apologize you have not had any other responses other than from GBMsibling. This part of the forum is not a very active one and members tend to not post unless they are knowledgeable about the specific type of cancer or share a similar experience.

    While I can not offer much as far as your diagnosis and possible treatments moving forward, GBMsibling has provided valuable information regarding insurance questions and suggestions on how to address some of the financial hardships. Treatment from any type of cancer, sadly, does have financial stress regardless of where you reside. You can have the best insurance and still, due to the extensive cost of treatment, there still is out of pocket expense that must be covered.

    The only advise I can think of is to speak with your doctor, explain the perplexity of your situation and perhaps they can at least reach out to the drug company to see if there is some financial relieve they can provide in regards to the cost of the drugs that may be used. We here on the forum can not provide financial support, it is not something we do here.

    We wish you luck in your situation and hope that you can find some financial support where you live to help with the expenses.

    Lisa
    Thank you so much!

 

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