Scared, confused and need advice
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!
Comments
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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 xxx0 -
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 xxx0 -
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
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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
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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.
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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.
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I am so sorry to hear your news.Monday must seem ages away to see your oncologist.I wonder if you rang now whether you could get an appointment tomorrow?They often have cancellations or will make space for special circumstances.Please don't sit and let those dark thoughts encompass you for the next 3 days.We know how bad the waiting can be. I think the fact that you feel fine is a good sign and whether you can wait for treatment or not will be up to your oncologist.My dear 80 yr old mum was diagnosed with liver cancer at the point where it had destroyed a third of her liver.She opted for no chemo and lived for a further 14 months.I have friends who have been living with liver(bc type)cancer for many,many years and manage it with medication.I hope you get to have that well planned holiday - thinking of you and sending hugs, Tonya xx
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Dear Tilly,
As a fellow liver metster, I remember how confronting the diagnosis can be, but can only repeat what some of the other women have said - it is not a death sentence. We are all different and there are many treatment options available now. It is over 2 years since I finished some chemo which shrank the liver nasties almost completely, and I am currently living well. Treatment continues, but minimal side-effects for me.
You will get a better idea of what is going on once you see your oncologist and work out a treatment plan. Talk to him/her about your proposed holiday too; personally, i doubt 3 weeks would make a difference and am always in favour of seizing the day! Just make sure you are comfortable with what is proposed.
Best wishes.... Pam
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Dear Tilly,
As a fellow liver metster, I remember how confronting the diagnosis can be, but can only repeat what some of the other women have said - it is not a death sentence. We are all different and there are many treatment options available now. It is over 2 years since I finished some chemo which shrank the liver nasties almost completely, and I am currently living well. Treatment continues, but minimal side-effects for me.
You will get a better idea of what is going on once you see your oncologist and work out a treatment plan. Talk to him/her about your proposed holiday too; personally, i doubt 3 weeks would make a difference and am always in favour of seizing the day! Just make sure you are comfortable with what is proposed.
Best wishes.... Pam
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Hi
Thanks for all the info and support .. Yesterday was a blur .. Most of the afternoon I couldn't even talk I was just a heap on my bed with my 2 little dogs .. I think they know again what is happening ... Since yesterday luckily I've got to speak to the nurses at the hospital and they have rushed me in tomorrow to have a bone scan .. And I will have blood tests and a heart test on Monday so the onc will everything he needs to make a prognosis .... I am still really scared .. As I'm thinking it's going to be really really bad ,.. But they now know I plan to fly out next Friday .. And the nurse told me it is a 3-4 week to start chemo normally .. So she can't imagine the doctor saying don't go ... But I know this is all circumstantial still at the moment .. I can't make a decision till I see the doctor .... Today I didn't go to work and went and sat on the beach ( my happy place ) and looked out the blue sky the sound of the waves and decided this IS NOT going to get me this time either ...
My cancer was oestrogen positive I think before ...0 -
Sounds like you've got some action and will have all the reports for your oncologist on Monday.It would also seem that it will take 3 weeks to organize chemo for you anyway.In 2010 my husband and I were going on a cruise ship/holiday and I made the mistake of having my mammogram a week before.I had breast cancer 7 years before and didn't think I had anything to worry about. So my report came back suspicious area,and a core biopsy showed breast cancer again.
My surgeon said to go have my holiday and I could have scans and surgery on my return. I had bc again but I still managed to enjoy my holiday.I guess I knew what I'd be in for and that it would be some time before I could go away again.I can only imagine your fears- it's what we all dread to hear.It's normal to feel sick to the core when you get that awful cancer news.But we all know it gets better with a plan in place.Glad you didn't go to work and went to your'happy place' the beach instead.I hope the weather stays nice for the weekend so you can spend more time there.I think nature helps to calm us.Tonya xx0 -
Sounds like you've got some action and will have all the reports for your oncologist on Monday.It would also seem that it will take 3 weeks to organize chemo for you anyway.In 2010 my husband and I were going on a cruise ship/holiday and I made the mistake of having my mammogram a week before.I had breast cancer 7 years before and didn't think I had anything to worry about. So my report came back suspicious area,and a core biopsy showed breast cancer again.
My surgeon said to go have my holiday and I could have scans and surgery on my return. I had bc again but I still managed to enjoy my holiday.I guess I knew what I'd be in for and that it would be some time before I could go away again.I can only imagine your fears- it's what we all dread to hear.It's normal to feel sick to the core when you get that awful cancer news.But we all know it gets better with a plan in place.Glad you didn't go to work and went to your'happy place' the beach instead.I hope the weather stays nice for the weekend so you can spend more time there.I think nature helps to calm us.Tonya xx0 -
Tonya, you have such a wonderful caring nature....just love reading your posts of support to others! Truly a reassurance to all the ladies on this site!
Big hug, Jen x
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It will be great for you to get away with your friend Tilly....different environment will recharge your energy for your next bout of treatment!
I met a lovely lady a few months ago who had found out about her secondary liver cancer 2 years ago following breast cancer diagnosis. She looked fabulous....and said she felt fine! As the others have said on here, it is more a chronic condition that can be treated.
Sending you cyber hugs and keep enjoying the beautiful ocean!
Jenny x
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Letting you know I'm thinking of you & sending lots of love & positive vibes.
Annette joycie xx0
