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Lynne48's avatar
Lynne48
Member
8 years ago

Liver mets & struggling

Two weeks ago I found out that my BC has metastasised to my liver, with multiple mets, the largest being 111mm in diameter.  I was initially diagnosed with Stage 3 BC cancer in February 2015 and had a bilateral mastectomy, followed by chemo, radiotherapy and hormone treatment.  I was fortunate in that I came through all treatments quite well, but this recent diagnosis has certainly thrown me!  I had been experiencing some pain for a month or so and had thought it was gall stones, as I had also been recently diagnosed with type 2 diabetes and gall stones was a common follow on.
I am a very pragmatic person, but am struggling with this recent diagnosis.  I just can't seem to get out of my own head at the moment.  I am struggling, because I feel that I have so much to organise and am losing control.  My first thought, was to try and organise our finances as best I can, as we are so reliant on my income at the moment, because we have such a large mortgage. Do I start to organise my funeral now, as I don't want to leave that burden on my family? I want to start organising things, but I haven't given up, I just don't want to leave it until the last minute when I'm too tired to care.
i start chemo in a week with Paclitaxel and like everything else I want to be organised.  My oncologist has said that the side effects should be minimal, but I want to be prepared.  I will be on weekly treatments for 3 weeks, followed by a week off and so on.  I need to work during treatment, so any information on what to expect would be greatly appreciated.
Sorry for the rather long discussion thread, but once I started, I just couldn't seem to stop.  I have so many questions, but will save the others for another time.
Cheers, Lynne
  • Lynne48's avatar
    Lynne48
    Member
    8 years ago
    Thanks so much everyone for your comments.  I have been off the grid for a while, just getting my head around everything.  I started on Paclitaxel last Monday and am feeling a bit blah at the moment, but I think some of that may be down to the pain meds I'm on at the moment.  Funeral plans are certainly on hold, as I'm going to be way too busy getting well!  <3
  • wendy_h67's avatar
    wendy_h67
    Member
    8 years ago
    Hi Lynne, I know how you feel when you are told you have metastatic breast cancer.  I was diagnosed with numerous bone mets. in 2012 and have been on different treatments to keep the cancer stable. I consider myself to have always been an organized person, so as soon as I was diagnosed, I wrote down what I wanted in regards to my funeral etc. for my family.  I think why I did this, was because I had organized my mothers funeral not long before my diagnosis.   I actually felt a weight off my shoulders when I had done this and then put the information away in a place the family know of and got on with living and enjoying time with my family and friends.  I guess that  I'm lucky to be retired, but for me it was good to take time and think about what you want.  I hope everything goes well for you with your treatment. 
  • angg66's avatar
    angg66
    Member
    8 years ago
    Hi Lynne. Sorry to meet you under such difficult circumstances. I am in a similar boat to you. I was diagnosed with mets in my liver & spine in 2015. My mets were stable up until last month when my oncologist told me the pain I'd been experiencing in my stomach was not gall stones but the liver mets which are increasing. I tried Paclitaxel & found it relatively free of major side effects. I could do my normal things. Unfortunately the Paclitaxel did not work for me so I am now on another chemo. 

    I am like you a very pragmatic & organised person. So I've made sure my will is up to date & I have powers of attorney in place. But it is too early to consider funerals etc. I know the news of mets is overwhelming at first, but just take it one step at a time & continue living life as best you can. 

    Ange xx
  • scientist's avatar
    scientist
    Member
    8 years ago
    Hi Lynne,

    Sorry to meet you here. I don't comment on here often because I normally just take a quick look at the conversations when I'm in the right frame of mind and then switch to something else when it gets too much. But I am happy to tell you that paclitaxel is good, well it was at least for me. I had 8 cycles (32 weeks) all up, because I was handling it so well. I had zero nausea, I felt completely fine. A few times I even went straight out for dinner with a friend after treatment!! I am only 38 though, so maybe that's the beauty of being "young". You do lose your hair, but it is slowly over time. It was much better than the FEC chemo that I had in 2009. 

    I totally understand you wanting to organise everything - but it is definitely too early to organise a funeral/will. Move that down your list of priorities right now. Way down!! Just focus on moving into your next phase of treatment. 

    I truly wish you all the best, and never give up hope. 
  • wendy55's avatar
    wendy55
    Member
    8 years ago
    Hi Lynne,
    I wont go into great detail here as the other ladies have given you some very good advice, its early days and yes you have a lot to get your head around, if you go to the living with metastatic breast cancer site here on bcna thats where you find me and a lot of other ladies who are unfortunately in the position of having metasteses{that does not look right!} myself I am 4 years post diagnosis and my initial diagnosis was simply advanced breast cancer, I had mets in my liver spine and of course 3 tumours in my left breast, I am currently on my 6thline of treatment, and living life as best I can, I havent made any funeral plans yet!!! best to make a list of what you need to look at and work through, there are support services out there you just have to find them,and yes I agree that feeling out of control is the worst type of emotion and all you want to do is be in control,that can, and will happen, one step at a time, easy to say and yet so hard to do,please ask away any questions you have and I am sure that we will try our hardest to answer them,be kind to yourself,big hugs,
    wendy55

  • Brenleigh's avatar
    Brenleigh
    Member
    8 years ago
    Hi Lynne48, Im so sorry to hear your news, my heart just breaks for you. I would love to think your oncologists could answer a lot of your questions re: your diagnosis and prognosis. If not you should be able to access a social worker who can not only help you through your diagnosis and adjustment to your news, but a lot of the financial concerns as well. I, myself live alone and wondered how I would cope if I have a recurrence, but I have to finish my first treatment first. (thinking to far ahead). It so unfair that you have to work, deal with your illness and have treatment....I have just returned to work, Ive had people say to me " you should be working" but hey, I am the only one that is going to pay my bills. Hope all goes well with your treatment, take care Brenda
  • Afraser's avatar
    Afraser
    Member
    8 years ago

    Hi Lynne48, what a difficult time this must be. But how brave and thoughtul of you to tackle it head on.  I too am the main income in my household, and while I seem to be OK (touch wood!), the thought that things might go sour again is never very far away form any of us.

    First thing is the good advice you have heard from others - there are many stories of women living with mets and making the most of their lives.

    Taxol is found to be easier that many other treatments by many women - it can have a few annoying side effects.  I lost my taste buds and got a susceptibility to nose bleeds - it's hard on the soft tissues - but it helped me lose weight, so a bit of a silver lining. I worked throughout A/C and Taxol.

    I started making my funeral plans etc about a year ago (4 years after diagnosis, I don't rush these things!). I am 72 and it's taken cancer to convince me I am not immortal! Both my parents kindly recorded what they wanted - saved no end of concern and uncertainty, so I think it's worth thinking about - well or not. But this is best done when you are not revolving in a state of sadness or loss. I found talking to a stranger (a counselor) for a  short time very helpful - not about having cancer, but having a changed notion of who I was with a few long term side effects. It helped immensely to accept the changes on a practical level but not feel that the essential me had to change.

    I hope you have some support at hand, but always reach out here. Very best wishes.

  • brightspace's avatar
    brightspace
    Member
    8 years ago
    Bi huggs Lynn
    sure is a scary time when given MBC diagnosis...learn to be kind to yourself..lots of time left

    Leave the will and funeral plan till later! 
    We cant do everything at once this will do your head in ......
    Please see a counsellor ring bcna for this 
    What type of cancer 
    Mine is mBC to Lungs its er positive  Her negative i been on AI drug for 16 MONTHS  all going ok still active 
    Post in met group
    All best Bright
  • iserbrown's avatar
    iserbrown
    Member
    8 years ago
    @Lynne48 I forgot to say, as I got side tracked (how unusual).............once you've made that funeral decision, put it away and be content in that you've visited that and it is a decision that is tucked away and hopefully not needed for a damn long time, 30, 40 50 years!  and look forward to a long happy life! 
    As @onemargie has suggested there are ladies on here living with metastatic cancer and some for a very long time.  Join the group and natter in private with others similar to your diagnosis 

    http://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer
  • primek's avatar
    primek
    Member
    8 years ago
    Hi @Lynne48 I'm sorry to hear of your new diagnosis and I myself are the main money earner in our family and we struggled during treatment so I would imagine I would be having a lot of the concerns you have.

    Things you could look at...accessing your super earlier if needed to provide an income. My life insurance had a trauma component which meant I could get half out and I paid out my morgtatge with it. Made a huge difference.

    As time goes on can you consider downsizing your home to reduce financial burden.

    Taxol does a fantastic job at shrinking tumours so I hope you respond quickly to it and have ninimal side effects. I had weekly and was miserable but many many women have less issues with it snd work and feel fine.  At least with 3 weekly you'll have a break which is good.

    I'm sure other ladies will reach out to you who have gone down this path. We are hear to listen and help anyway we can. Kath x