Hi, I don't even know where to start or what to say because at this stage I don't really know anything - I had breast cancer 6 years ago mastectomy chemo and reconstruction. To me it was the past something that happened, I know in the back of my mind I always knew it would come back but know the reality is here... It's just too hard to cope. I feel fine but having had to find a new doctor he sent me for tests to get to know my health and tests started coming back abnormal now a CT scan shows extensive liver metastatic disease. I only know this so far because the report was in with the scans I need to take to the Oncologist on Monday ...I am numb scared... Thinking I won't even see Xmas... I have a 3 week holiday booked for next Friday with a girlfriend we have been planning it for a year I have had a really bad emotional and stressful couple of years... I was waiting to come back to do my yearly scans etc ... Does anyone have any advice on waiting 3 weeks to start treatment if that would be ok... I know this should be the last thing on my mind .. But I think if I only have months I should do everything I want to do while I feel good .. But then I think can I become really sick in a week or 2 ... I feel I am going insane!

I just wanted to reach out and say I'm so sorry that this is happening for you. I cannot say anything that will take away your shock and pain right now but I really hope that the oncologist will help to set your mind at rest over a few of your immediate concerns. I know that many of the people with secondaries have said that this type of diagnosis is not a death sentence. There are people who have treatment and their quality of life is pretty good for many years so don't think that you will be sick straight away because this is probably not the case. I really hope that you can get some answers, still go on your holiday and have some quality time with your friend. Wishing you all the best. Deanne xxx

like Deanne I just wanted to reach out to you, I do not have the answers thats something that you need to decide after consultation with your onc. I do hope for you though that you can have that holiday. I am so sorry what you are faced with and wish all the best for you. Sending you hugs Donna

Hi Tilly, About whether to go on a holiday now, or to leave it and start treatment straight away, first I would ask my oncologist about that. I would also make sure I see the oncologist asap, not just surgeons, before deciding on what to do re treatment and also holiday. Psychologically, a key point to consider is whether you would actually enjoy your holiday now, or whether you would be better to postpone it and get your money back through your travel insurance. I would ask you to also consider whether you would still choose to go on the holiday now not in a year's time if you knew for sure that this was only a hiccough, and that you would definitely be much better in a year's time, and could count of having another ten years at least to live. I would guess that you are making this choice out of the belief that you will die soon, when there may well be a very good chance that you actually have a year of treatment and then quite a while left to live. I do feel for you, and your dilemma: I had a two week wedding anniversary holiday in Tasmania booked for the day my chemo started, and I simply followed the oncologist's advice about when to start treatment. I felt terribly sad giving up our lovely holiday, but it seemed to me that going on the holiday would (for me) have been going with the hypothesis that I would die quite soon of this breast cancer. Choosing to start treatment was choosing to believe I would survive it and (probably) have a good long life. Also, while it must be terribly scary having extensive liver metastases, there really is reason to hope for a turnaround, particularly if you are HER2.pos. I have a dear friend who was clear of cancer in July last year, had a dozen golfball sized tumors in her liver and lungs and possibly one in her bones, by the end of the year. She is HER2pos and ERpos. Arlene put her straight onto Herceptin and Paclitaxel and also hormone treatment. After 3months, the biggest one was 70% smaller, after 6months, they were not growing or shrinking, after 9months, they had all vanished except for one half-centimetre one in her lungs, which is expected to vanish too. She was in the same place you are now: confused, sad, preparing to die soon. Now she is giving herself time to heal and planning what she will do next year. And another woman in the oncology ward had metastatic liver cancer plus primary breast cancer on first diagnosis 7 years ago, which all vanished with chemotherapy last time. She was clear for about 6 years and then the lump in her breast came back. It all shrank a lot with herceptin and chemo, and she has now had surgery and is looking good. She said the oncologist just admitted to her that when she first saw her with metastatic cancer as well as primary, she did not expect her to last out the year. Now 7years later, she has had a hiccough and will have her treatment and contine to make the most of her life. Do you know what sort of cancer you had from last time, ie if it is HER2pos or neg, ERpos or neg, PRpos or neg? Because it will affect the treatment they give you and the prognosis. Treatments have got so much better since you were first diagnosed, new techniques are transforming the course of the disease, which is now so often a chronic illness not a death sentence. But then there are even cures, even with extensive metastatic disease. The liver is one of the best sites to get it because it heals quickly as well as growing quickly. I hope you will find a way to accommodate this fear and horror and sadness, and to let hope and patience and joy back in. This is such a challenge, so hard, but I am sure you will get there, I wish you all the best Jessica.

Scared, confused and need advice | BCNA Online Network

Tilly14
Member
11 years ago
Hi I have been meaning to come back on and write an update .. But everytime i do I don't really know where to start .. I had my first visit with the physcolgist at the hospital yesterday and she said I was still in the grief stage which I guess I am .. It's really hard to understand where I'm at .. I am not so out of control as I was when I first found out .. Sometimes I think I am just numb just going day by day ... But I've been back at work for 2 weeks now .. And had my first 3 rounds of chemo .. And dso farexcept losing my hair .. Feel pretty good health wise ... Not sleeping much which makes me pretty tired by the end of the day though Though I have been doing a lot of thinking and planning and have been in touch with my insurance and have a meeting set up with the legal team with the cancer council to apply access it so I can give up work and spend the rest of my time with my daughter and grandson ... Would be great to hear from anyone that has any info on the process .. How long it's likely to take ? I think that's my main goal now is just to fix up all the financial things for my daughter and cut out all the stress so I can put everything into keep living as long as I can ... I'm not accepting a short time prognosis at this stage ( even though that might be denial :( I have to believe to keep going ... Thanks for keeping in touch ... And the support it does help soooo much ...
Believenat
Member
11 years ago
How are you coping? Thinking of you
Believenat
Member
11 years ago
How are you coping? Thinking of you
JessicaV
Member
11 years ago
Hi Tilly14,

First, we are here with you, your fellow travellers on this webpage.

You are not as alone as you feel you are, there is help and support for yourself and your daughter, including all of us on this website. And the cancer organisiations have counselling and other assistance for your daughter as well. If you tell me which city you live in, I will hunt out all the info I can.

Second, when you are tired, sick, scared and the rug has just been pulled out from under your feet, things always look bad and feel much worse than they really are. And this is also why you will naturally underestimate what you can cope with and survive at the moment.

i know you are dealing with really frightening stuff, but so you are currently more vulnerable and more emotionally reactive than you generally are, so you will find it easier to believe in yourself, and that you can get through your treatment once you start to get back on your feet again.

Third, sometimes knowing your family really needs you and that you cannot actually fit dying into the plans can be a powerful incentive to push through difficult times and to find the determination to persist and can help you survive better. To find the faith against all odds to know that you will get through this. I have a friend whose liver packed in when his wife had left him and he was raising two very young children on his own. His doctor told him to see his lawyer, but he knew he had to be there for his kids, and twenty years later he is still going strong.

When you get a little energy back, you will find it much more possible to grit your teeth and hold true, and easier to push the despair and hopelessness away. The fact that it is really hard to do now is not because things really are hopeless, just that you are so vulnerable and tired etc.

best wishes
Danielle_BCNA
Member
11 years ago
hi Tilly, I hope that the treatment goes well today. Once you get through the next few days you will hopefully have a little more confidence about what this chemo will be all about and you will settle into a routine. Starting the first dose is always very scary. Make sure you let your chemo nurses know that you are feeling really anxious. They can be a great support. Ask them about what resources are available to you at the hospital. There might be a counsellor that you could meet with and talk through some of the feelings you are experiencing, especially about your worries around your daughter.

Best wishes

Danielle
Tilly14
Member
11 years ago
We'll after a week and half of every test imaginable I am stating treatment today on abraxin ... I thought once I knew I would cope better but I feel all hope has gone and now I have to fight this with everything and I don't know if I. Strong enough to do it ... Now all I think about is my daughter and grandson it is only us 3 we have no other family I've always felt I need to be there for them and now I'm not going to be and if something happens to my daughter who will look after maxxy he is only 2 all it does it invade my thoughts ... How do you ever get through this .....
TonyaM
Member
11 years ago
You poor darling- am so sorry to hear you are stuck in hospital having tests and that your trip is postponed.Life can just smack you in the face- one minute you are fine, looking forward to a trip and then the next, you are in hospital dealing with bc mets.I would be in a dark place too.Do you have family support?I hope you are getting good care.Stay strong and know we are all thinking of you.Sending love and hugs, Tonya xx
KathleenT
Member
11 years ago
Hi Tilly I can't imagine how you're feeling now...suddenly my secondary in my lower back is indignificant! I am very lucky it hasnt changed or spread for 4 years. My father was diagnosed with multiple myeloma in 2007, & only lived till 2009. Till he was diagnosed, he was so well. It was devasting for all of us. He went with my younger sister to the top of Western Australia: a dream and bucket list he'd always had. His oncologist sorted his meds, & even though he wasn't the best...in a wheelchair (hard for my sis who's built like a stick!), but they had a ball, & the last few months were very peaceful and restful for him. Having said all this, I reckon you have much more time, & should do just exactly what you want, within the alliwances of your treatment. I find the breast care nurses who work with the oncologists have really valuable strategies for coping emotionally as well. Its great you are surrounded by wonderful family & friends. You are incredibly positive, strong and brave. Make some affirmation cards with phrases like that on them (they're fun to make & you csn forget your worries by being creative); & keep little piles of them in your handbags, round the house & next to your bed. My friend made me a little box of them. Love and hugs to you Kathleen xxxxxxxooooooo
KathleenT
Member
11 years ago
Hi Tilly I can't imagine how you're feeling now...suddenly my secondary in my lower back is indignificant! I am very lucky it hasnt changed or spread for 4 years. My father was diagnosed with multiple myeloma in 2007, & only lived till 2009. Till he was diagnosed, he was so well. It was devasting for all of us. He went with my younger sister to the top of Western Australia: a dream and bucket list he'd always had. His oncologist sorted his meds, & even though he wasn't the best...in a wheelchair (hard for my sis who's built like a stick!), but they had a ball, & the last few months were very peaceful and restful for him. Having said all this, I reckon you have much more time, & should do just exactly what you want, within the alliwances of your treatment. I find the breast care nurses who work with the oncologists have really valuable strategies for coping emotionally as well. Its great you are surrounded by wonderful family & friends. You are incredibly positive, strong and brave. Make some affirmation cards with phrases like that on them (they're fun to make & you csn forget your worries by being creative); & keep little piles of them in your handbags, round the house & next to your bed. My friend made me a little box of them. Love and hugs to you Kathleen xxxxxxxooooooo
Annette_joycie
Member
11 years ago
Letting you know I'm thinking of you & sending lots of love & positive vibes. Annette joycie xx