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Devastated

Laurs
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Hi

It has taken me a lot to write this 

My daughter is 34 with three young children and has been diagnosed with secondary liver cancer from an unknown source.. the liver biopsy indicated upper GI cells but they are not sure .  She has a lump in her chest three years ago that they thought was cancer but because it shrunk they said it was hormonal so I'm wondering if this has stemmed from that thou they are being very evasive with ant answers when we have asked . 

I've googled and it looks grim as it says as it's unknown it will be difficult to treat as they will have to guess the chemo type she receives . I'm so devastated I don't know what to do..has anyone had anything like this. Help me feel better please.

Thank you .

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    HI Laurs,

    A very warm welcome to our forum.

    I couldn't pass by without saying how very sorry I am to hear about your daughter's diagnosis. Has her care team exhausted all the options for finding the primary source? You may well be right about her chest being the primary source. I have  had 2 bouts of breast  cancer, within a  year of one another. My first diagnosis stated that it was a mucinous cancer, stage one and that this was one of the less invasive cancers. After surgery, I was told that the pathology report showed that the surgeon had not achieved clear margins. My surgeon advised me that he was aware of this at the time and had taken more tissue away. He assured me that there was no need for further surgery. When I discovered a second lump in the same breast, less than a year later, it was diagnosed as a new primary cancer of the same type and grade. I too wondered at the time, if this was as a result of not taking all the cancer away on the first occasion, but  was faced with some very evasive answers.

    The first piece of advice I'd give you is to stop googling. The information here is based on the more spectacular cases, won't apply to your daughter, won't give you any answers and will only serve to scare you further. If you must investigate, try to stick to well respected sites like this. If you go to the cancer research site and pop liver cancer into the search engine, you will find some information on this.

    I sincerely hope that your daughter can start her treatment soon and that her care team can find the right chemo to target her symptoms. All you can do is to be there for her. I expect that she may feel very tired throughout treatment and I'm sure that your emotional support will be what means most to her. I expect that your grandchildren are still quite young and possibly involved in various sporting or special interest groups, and, I'm  sure that it would be a great help if you could supervise these, or escort them to their various activities. It will be important for the children to try and keep daily routines as normal as possible. Help with general housekeeping - shopping, ironing, cooking, etc, would also be invaluable. Do you have someone that you can turn to for support? It is important that you can talk to someone, besides your daughter, about how you actually feel. 

    Please remember that we are always here for you, and keep us informed as she travels her cancer journey.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Hi Jolamine thank you so much for your reply it has helped me a great deal. .I will keep you informed about her journey and I hope and  pray she has many yeate left 

    I hope you have been treated and are well 

    Kind regards..Laura 

  • Offline in reply to Laurs

    Hi Laura,

    I am glad to hear that my reply has helped a little, although I sincerely wish that it could help more. I have accepted your friend request. I nursed my mother when she had secondary breast cancer, which had spread to her brain, bones, liver and lungs. It wasn't the easiest of journeys, although she was considerably older and, I expect, less fit than your daughter. It is a strange thing, but when life throws us challenges like these, we do find the strength to see them through.

    Fortunately, it is now 14 years since my diagnosis and, although life is not the same as it was prior to cancer, I still lead a busy and fulfilling life.

    Like you, I do hope and pray that your daughter has many years still to come.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Hi Jolamine

    I hope you are well..Happy new year to you .

    I just wanted to let you know that my daughter starts her chemo in Monday next week .

    I'm really worried about it I hope she's ok and not very poorly as I can't help ATM as I have a fractured knee and it's going to take 4 to 6 weeks to heal .

    I hope and pray they can shrunk it .

    Laurs xx

  • Offline in reply to Laurs

    HI Laura,

    You will naturally be worried about your daughter starting chemo, but the sooner she starts this, the sooner it can begin to impact on the cancer cells. How she'll feel will, to some extent, depend on what chemo she gets. Do you know what type of chemo she'll be having, or how many sessions are scheduled? I sincerely hope that it does what it is supposed to do for her.

    How unfortunate that you have fractured your knee at this time. Did you have a fall? I have two replacement knees and know how limiting a sore knee can be. I hope that you recover soon.

    Please keep in touch and let us know how your daughter gets on.

    You are both in my thoughts and prayers and I am always here for you.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Hi Jolamine

    Thank you so much for your reply. 'm not sure which chemo as yet as she's seeing her oncologist on Thursday. She did say they it's every three weeks and tablets every day .I hope and pray it works.im set for a difficult year thus year but if the outcome is that she has many more years it will be worth the pain .

    I unfortunately was knocked down by a car in a supermarket car park the guy reversed into me and claims he didn't see me...I ended up in A&e I'm so upset as I feel everything is closing in on me at that moment .

    I feel your pain with the two knee replacements ..I have osteoarthritis in both knees  which can be limiting.K

    Thank you for your support I really appreciate it .

    Kind regards 

    Laura 

  • Offline in reply to Laurs

    Hi Laura,

    Whatever it is, I sincerely hope that it works for her.

    Knocked down in a car park? That is most unfortunate, just when your daughter needs you most. I had osteoarthritis too, but my cancer treatment exacerbated the pain so much, that I had to have them replaced. You are bound to be feeling low at present and there may be some tough times ahead. You will need to be the positive support that your daughter can lean on. Sometimes, when our back is up against the wall, we find hidden strengths, that we never knew we had before.

    Please keep in touch and remember, that I am always here for you.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Hi Jolamine 

    I hope you are ok.

    We didn't have very good news today they have told Emma that they are not doing the chemo on Monday as they are not sure what chemo to give her.  They originally said the primary came from the upper GI but now that are saying it may not be the upper GI and they want to do more scans I don't feel they know what they are doing  they then said a liver transplant but they not sure they want to do that either ...  they are still stating 12 months survival ..I can't get my head round it ..she is not showing  symptoms and seems ok ..

    I feel we should get a second opinion from a specialist hospital in London or Manchester...we live in Surrey.  I just don't know what to do 

    Laura xx

  • Offline in reply to Laurs

    Hi Laura,

    What a disappointment. Looking at the bigger picture, it is probably makes sense to try and find the primary first of all, because they would then know what to target the cancer with. A liver transplant seems a big operation If they are only giving your daughter 12 months to live - how much longer do they expect her to survive for with a new liver and did they tell you the survival rate for a liver transplant operation? It must be so hard for you to take this all in, especially when she is not showing any symptoms. How is your daughter feeling about all of this?

    Living in Surrey, you are in the right location to access a number of specialist hospitals. Everyone is entitled to a second opinion within the NHS and, in your daughter's case, I would expect that this could well be from a specialist hospital. It might be worth doing this before you look at bankrolling private treatment, possibly from the same specialists.

    I really feel for you all tonight and I sincerely hope that you can get some definite answers soon.

    Please let me know where you go from here and remember, that I am always here.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Hi Jolamine

    I hope all is well with you 

    I'm.sorry I have not replied sooner but I am having a really bad few days whereby I have stayed in bed and not coping at all.

    My daughter still does not have a treatment plan and they have done another scan and she has another MRI on Sunday and now they are saying they want to do another biopsy as they have run out of cells from thr previous biopsy...we are so confused with everything and she is not in s good place atm either .I'm scared that they are not treating her quickly enough and then they can't treat her. 

    Kind regards

    Laura 

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