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Secondary Liver

13 REPLIES 13
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Re: Secondary Liver

Hi Sarah,

Im sorry you’ve had to join us but I’m glad you’re feeling a bit more positive since seeing your oncologist. I just wanted to say that like Nicky I’ve lived with liver secondaries for a long time (11 years in my case). At the time I didn’t think I would see my youngest go up to senior school let alone see any of them go to uni or get married. Now two are married and one is expecting my first grandchild, so I’m overjoyed at living long enough to see this day.

i just wanted to encourage you that a secondary diagnosis isn’t always ‘the end’, but you may have very many years of reasonably good health and see a lot more milestones than you could think possible.

There are other threads about RFA (radio frequency ablation) and liver surgery, if you are eligible for those.

i wish you all the very best for your treatment, and try to enjoy the rest of the summer before the uni term starts again. The house will become very quiet!

Jx

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Re: Secondary Liver

Hi sarah

no problem and I hope your children get off on their future journeys in life and enjoy themselves - I’m sure, like me, it’s what you’d want for them both.

I also just saw your earlier post about travel insurance. We used to have a travel insurance thread appear on the front page of the secondaries part of the forum as it is quite a different experience to get it for secondaries as opposed to primary BC. I’ll ‘bump’ it up the page (it used to be a ‘sticky’ thread which means it was always stuck to the first page) and it may be worth reading that. A lot of companies ask a huge amount of questions and it takes and age if you want to get a quote from several of them to compare. From what didi has said, and from what I know, only some companies will insure you for a cruise, understandably as you're not on dry land should a problem occur, however quite a few will give more reasonable quotes for Europe in general. USA and further abroad is a different ball game altogether and you really have to search hard for a comapnay that will insure you in the first place and at a reasonable price if they will insure you. I have used Eurotunnel for many years, no long winded medical questionnaire and very comprehensive insurance cover, including annual at a fair price, you don’t need to be travelling by Eurotunnel to use their insurance.

Nicky x 

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Re: Secondary Liver

Hi Nicky,

Thank you so much for this response it is lovely to here a good news story.

I am feeling much more positive having seen oncologist again yesterday.. my tumour markers are only very slightly raised and it appears that there is only one tumour in the liver less than 2cm so fingers crossed.. 

My eldest goes to S Africa on Friday and then starts her year of travelling after briefly returning home on the 1st October and my youngest goes to university in September.

I am so immensely proud of them both and all they have achieved to date and the way they are dealing with my diagnosis..

I did ask my oncologist about surgery but he explained that is rare people with secondary breast cancer are offered surgery due to the likely risk if further mets. I will bear it in mind should mine reduce or remain stable and I continue to have no further areas develop.

Thanks once again fir taking the time to reply x

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Re: Secondary Liver

Hi Sarah

I have seen your other post, and replied, but this post has some different questions to answer.

My bone mets were diagnosed in 2008 when my daughters were still at secondary school or college. I wanted them to do exactly what they wanted to do when it came to universities etc.  It did affect them both in ways I didnt appreciate at the time but I have been honest with them from the start.  My eldest delayed going to uni for 3 years, working in between until she was ready to go.  My youngest went straight from A levels to 3 years in Paris for a French degree.  I hated her going but wouldnt have held her back for the world.  She then got a job out there after her degree and was loving life.  When my liver mets were dx some 5 years ago I felt both physically and mentally I was going to die, I was in such poor health (mainly due to heart failure caused by previous FEC chem) and asked her to come home (mainy as I didnt want her to regret not being part of my life if I did die).  Luckily she is still reminding me, 5 years later, that I made her come home ha ha. I had extensive treatment for my heart condition which was the turning point and responded well to the cancer treatments I've had over the years.  As I have said on the other thread I have just had liver surgery a few months ago so techinically my liver mets are less than they were 5 years ago, bone mets have remained stable the whole time.  I have responded well when I have been on hormone treatments including letrozole and anastrozole although have not been able to have the newer accompanying drugs as I don't meet the criteria (having had too many treatments over the years).  Hormone trwatments do work well for many ladies and can be as effective as the harsh chemo regimes.  Surgery or targeted treatments such as RFA are only generally considered once your secondaries are stable or under control.  As to holistic medications I would suggest you run anything past your oncologist before starting anything as there can be contra indications.  A healthy diet is always a good idea (for everyone not just cancer patients) but all I can say is over the 10 or so years I've had secondaries I've not changed much at all or incorporated anything different and as we (and our cancers) are all different I have no idea if this has been the right approach or not.  Again, any drastic changes would be worth discussing first with your team and be aware certain foods, for example grapefruit juice, which appear to be healthy, can interfere with all sorts of medications. 

Nicky x

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Re: Secondary Liver

Hi Sarah,I get cruise travel insurance through Insure Pink.I ring and speak to them on phone.a 2week trip in 2016(before my tiny bone met dx )was £115 for 2 weeks to Mediterranean.this year a weeks cruise from Malta and a 2 night stay in Malta cost the same having declared the bone met.excess of about £250 for any claim.I have never had to make a claim thankfully. I will book next years insurance about Easter so I have more up to date health information.My gp recommendation is Boots insurance but I have not had a quote off them.

best wishes Didi 

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Re: Secondary Liver

Thanks Jill and I wish you well with any treatment you may need.

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Re: Secondary Liver

Thank you for the response Didi62... like you say I hope that because I am both physically and mentally strong that I cope well with the medication and am around for a long time.

Can I just ask you about insurance did you have any issues getting travel insurance due to your prognosis .

Sarah x

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Re: Secondary Liver

Hi Sarah sorry to hear you have been dx with secondaries  to your liver.It is very difficult at the start to cope with the news but you learn to live with it I have found.I had primary grade 1  stage 1.only had lumpectomy,radiotherapy and tamoxifen.excellent prognosis they said. 3 and a half years later i was dx with extensive liver tumours and told prognosis of 2-3 years. I had fec chemo and   been on letrozole ever since.It is working very well for me.Blood tumour markers were nearly 3,000 during chemo. now only 21 so oncologists very happy with how treatment is working.It is over 2 years since my prognosis and I still work full time and carry on mainly as normal.letrozole gives me bad leg and feet aches and pains but nothing I can’t cope with.I also have 1 bone met dx last year but that has shrunk so not visible on scan any more. I have a denosumab injection every28 days for that.I certainly don’t feel like I might only live another year.I was well when I went into the secondary dx so I think that has helped me to cope with the treatments too.

a prognosis is only based on an average figure which I imagine includes people a lot older and sicker who have less chance of surviving a long time.

I intend to be here for a while yet,in fact I recently booked to go on a cruise in September 2019!!When I was first dx I wouldn’t plan anything a month ahead so it shows how over time you learn to cope with the difficult situation you now find yourself in.

with very best wishes to you during your treatment,Didix

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Re: Secondary Liver

Hi Sarah,

My BC was 1999 when my children were small, my bone mets appeared Dec2014. My daughter had just started university and my son had moved to live and work in Brighton. So far I havent told either of them or my 82year old mother. 

I have a strong support group of ladies who I met when we were all first diagnosed in 1999 so I have all the help I need. I have been on Exemestane for 3 and a half years and have been living a normal life and so I didn’t want my children to have the burden of knowledge,worrying about me when this time in their lives is so lovely and special. I didn’t want them returning home to look after me. Some of my support group struggled to understand this and my oncologist and nurses also think I should tell them. I had a little counselling when I first had secondaries and he said “ what a gift you have given them “ and that I shouldn’t doubt my decision.

ive just had my first progression and waiting for scan results next week. If I need stronger drugs like chemo etc then of course they will have to know as it would be too difficult to hide but I will always be glad that I was able to let them be free of the knowledge for a few years.

with love

xxx

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Re: Secondary Liver

There certainly seem to have been some really positive stories re liver treatments.
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Re: Secondary Liver

That you Jill, reading about others gives me hope x

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Re: Secondary Liver

This thread may also be of interest to you Nicky08 is still very active on the forum .https://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/Ablation-vs-Liver-Resection/t...
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Re: Secondary Liver

Hello Sarah ,welcome and sorry you have found yourself here .I am not a secondary lady but I am currently awaiting scan results following suspicious areas on x Ray and doctors have indicated that I may well have bone mets( first cancer was 2015) .I have a son about to go into his third year at University and the last thing I want to do is spoil his experience there or stop him doing well - he has worked so hard so far .We have protected him from what is going on so far but will have to address this at some point I guess -I can imagine how difficult this must be for you particularly being a single parent - we just want to protect our children don't we even when they are young adults .The ladies here will tell you that there is really no point in thinking about timescales as everyone is so different in how they respond to treatment but certainly there are ladies on the forum who have lived for many years with secondaries and that is without the benefit of the new threatments now being offered one of which you are about to start.There is a thread for ladies who are on your treatment if you would like to ask questions https://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Kisqali-ribociclib/td-p/120348... There is also a very active thread - bone mets please join in where most secondary ladies ( whatever their diagnosis ) chat . All the best .Jill.
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Secondary Liver

Hi, I have been diagnosed with secondary bc to the liver and am looking to join this group for support.

i was initially dx in 2016 and had mastectomy and lymph node clearance followed by six rounds of Tac and radiotherapy and was also part of an aspirin trial.This year i have undergone reconstructive surgery and just felt to be getting on top of things and now this ,,,

It looks like my treatment programme is going to be letrozole and ribiciclib. I feel rather lost at the moment and as though I was almost written off timescales of 1-2 years being mentioned. I am a single parent with two daughters my eldest has just finished at university and is going travelling and my youngest is just about to start at university in September and I want to be around for a long time yet for them and don’t want this latest diagnosis to stop them following their dreams.

I wondered if any one had gone down the holistic approach in line with conventional medicine and also wondered about diet changes etc

I am trying to understand why surgery is not an option and wanted to hear about anyone’s experience on the above medication.