Hi Deb great to hear from you.I don’t seem to write much on the site now but look in at posts sometimes.
sorry to read you are still having problems and hope the oncologist appointment goes ok tomorrow.this disease really causes us so much worry and stress that we don’t need.
I am doing ok thankfully.just on letrozole which seems to be keeping tumours stable.they didn’t really shrink much on chemotherapy but haven’t grown since which doctors are happy with.They finally decided I did have bone mets in August so started on denosumab injections every 28 days.I am not convinced if I do have them and don’t have any symptoms apart from lots of aching bone from hips down which I put down to the letrozole.My tumour markers are now 23 from 3,000 when I was on chemo so that’s amazing.
.I am still working full time and have a holiday booked for June to the Adriatic where I’ve never been before.Insurance cost the same as last years
.I had a liver mri in April and get the results 31st May.My oncologist wanted one done as I have been stable for a while and she wanted to send results to Liver Unit in Birmingham to see if they can offer any treatments for me.she didn’t explain what that might involve so I shall see when I go to my appointment.
Take care Deb best wishes Didi x
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What a coincidence, seeing this thread come back up the page - I was about to search for it to post an update about my liver surgery to help anyone else being offered it or considering it.
Last year RFA was discussed to deal with one liver met in particular that responds to chemo etc but over the years has remained fairly consistent, whereas other much smaller lesions have shrunk or disappeared completely. It turned out I couldnt have RFA as the lesion was too big and surgery was also ruled out as it was decided I should go back onto a systemic treatment, in this case Eribulin. I was on that for 8 cycles as the second opinion I had from one of the oncologists at The Marsden was that it might compromise my bone marrow if I had more cycles, probably because I'd been on fairly constant chemo for quite a long time (initially Cape, then docetaxel, then kadcyla). I had responded well to Eribulin and my CT only showed this larger lesion. A subsequent MRI showed two much smaler lesions as well but too small for a CT to pick up. My oncologist then mentioned surgery again - which I was surprised about as it had been over a year since it was first mentioned. I decided to explore this because, as she pointed out, it would take a big response from either chemo or hormone treatment for the large lesion to 'disappear'. We have a well reknowned liver cancer surgeon at my local hosptial so I had a consultation and it was agreed they could operate and not only remove the large lesion but the two smaller ones as well.
So 3 and a half weeks ago I had my surgery. It is fairly major, more so than I thought, but I was confident that I was physically and mentally in a good place to cope. All went smoothly and I'm now on the recovery path. I have continued to be on hormone treatment whilst I had the op so there has been no break in treatment, it will just be up to the next set of scans to show how effective that has been. As the surgeon said it has wiped the slate clean regarding the liver lesions, although I'm fully aware that they are likely to come back again but at least the largest one (which was causing me concern as it had continued to grow over time) has now gone.
If anyone is in a similar position and wants to find out more about the actual operation and recovery please PM me, I''l be happy to help if I can.
Hi Nicky well nurse rang and said doctors decided whatever showed on my spine is so small can't tell exactly what it is but not saying it is bone mets.so just have routine ct scans and keep an eye out for any changes.so I rang insure pink to get travel insurance quote.got 14 night cruise cover to Europe for £115.21.i was pleasantly surprised at the cost so took it out without trying any others.then I booked my cruise for June.so I am very happy today.just need to work out how to lose weight before then or I could be needing a new holiday wardrobe!!didi x
its interesting regarding scans because any insurer for what ever the health problem almost always insists there's no cover if you are awaiting the results of an investigation. As us SBC ladies are always being scanned, well, every 3 months or so, I suppose this could be an issue. However if you haven't had the appointment for your scan, ie your oncologist hasn't requested it, then you are not awaiting any results at that point or in fact know when you will be having a particular scan. I have gone away between a scan and the results so I suppose I might not have been covered should a problem have arisen whilst away but as I've only ever gone into Eurpoe in these circumstances I know I would still be covered by my EHIC card which I always carry. Any extra insurance is to make sure I can claim should a problem occur whilst away with my mets - which it never has done in 9 years. If you get an annual policy you have to let them know of any changes in your condition during the term of the policy. And I think the typical wording regarding being covered is any changes in say stability of your disease happens when the policy is taken out or on booking a holiday in the period of annual cover, whichever is the later. All very complicated but it's never stopped me or my OH having as many short (and long!) holidays away in between scans. Once you are feeling like going away you should try to do it as long as you are feeling like going. Sometimes a short break in the Uk can also help with a change of scenery and no day to day reminders of SBC/hospitals/oncologists etc.
BTW I currently have an annual worldwide policy which I needed last year as I went to New York when my brother got remarried and have used it for several other trips into Europe. It is due for renewal around mid March so depending on the outcome of some scans due early March I will either take out another annual policy or just pay for a single trip policy once we know if we are going away or not. The travel insurance thread should help you decide what's best for you as there is input from quite a few ladies using different companies.
Hi Nicky thanks.hopefully it won't be bone mets and I can get a holiday booked.have you got travel insurance when you have a 3 monthly scan booked.i am due one early April but worry I won't be able to get insurance until that result is in.?At this rate I will never be able to go away!take care Didi
HHope your next scan results don't show anything extra to add to the mix and that it is 'just' wear and tear on the bones. If you get to a stage where the disease is stable (or responding to treatment as your liver mets obviously are) check out the travel insurance thread. There's lots of up to date info that us ladies have added about companies that will insure us - and plenty that won't! It also doesn't have to cost a fortune, especially travelling into Europe so let's hope you can get out and get some normality back into your life - it's something we all crave!
Hi Deb I am not too bad.after 6 chemo I started on letrozole.this is giving me bad aches and pains and stiffness in bones and joints but no hot flushes thankfully.had ct scan 2 nd January.it showed liver tumours reduced in size a bit.but also showed 3 possible lesions on lower spine.had bone scan and nurse I spoke to on phone Friday told me report doesn't say any definite bone mets .but they will discuss it at team meeting on Tuesday and let me know.it said lots of degenerative wear and tear and arthritis.my tumour markers have come down from nearly 3,000 in September,1,500+ in November but now 168.so much better.
So hopefully everything is going ok at the moment even though I feel about 90 not 54!!!
I really want to go on holiday but can't even get a quote for travel insurance as I'm waiting for scan results.it is all so frustrating as I don't even know if the quotes will be too high to go abroad or if it will be possible.my oncologist and gp said I could go away but not to an under developed country or more than 4 hours flying time away.neither of which I was planning anyway.i like a working bathroom and solid walls to my hotel!!
i hope that things are going smoothly for you and your treatments have helped. Best wishes Didi x
Hi yes we are both getting through this journey we didn't expect. I have 'numerous 'tumours in 4 different parts of liver.i assume that means too many to count!! One is large.i just hope that at the end of this chemo it will have shrunk some of them.i will be pretty annoyed if it hasn't!!!!take care dx
Hi debs how are you doing?is the chemo going ok?i have number 5 on Wednesday.am coping ok with the reduced dose after first dose put me in hospital.had bad results it seems to me last week as no reduction in tumours on liver but no new ones at least.also ca 15-3 markers have gone up from 8 in August to nearly 3,000!!!no one can explain why this is but worries me a lot.having MRI of liver tomorrow and see oncologist 3november.trying to keep calm and carry on but it's hard didi x
My liver met was picked up by a chance X-ray, then a biopsy to confirm it.
I had a liver resection in December at the QE in Birmingham - they only offered it as it was one met and it had been stable for over 12 months. Not the easiest op but back at work after 12 weeks, and my two subsequent MRI scans have been clear. Still on Letrozole and zoladex, see my doc every 3 months at the mo.
Oh no, that's such sad news about Tomboy. That seemed to happen quickly. Thinking of all her friends and family.
Mateface, I think a CT scan shows there is a lesion, but an MRI shows more detail of the lesion so they can see what they're dealing with
May I just ask how your liver mets were found? I was treated for primary BC nearly 5 years ago now. a couple of weeks ago I had a CT scan for a suspected appendicitis. Nothing wrong with the appendix as it turned out but they found a 1cm lesion and now want me to have an MRI to find out what kind of lesion it is. I was wondering why they can't determine that from a CT scan. I would welcome any thoughts and send best wishes to all,
I have been refused surgery/keyhole/microwave by Aintree hospital today. I have one lesion on the liver 2.9cm, and all other lesions on the liver have disappeared following a course of docetaxel. The cancer in my bones is stable (left arm,ribs,hip and spine). Which hospital did you have your treatment? I don't know why they've refused me yet but I'll find out on Monday. I know that referrals for liver treatment for secondary BC patients is not common and would like to find out which hospitals will consider me before I start researching this. Very grateful for any advice you can give me. I am ER+, primary dx Oct 13, secondary dx (liver, bones) May 15, just finished docetaxel, taking zolandronic acid and calcium tablets.
have you been for the surgery?
i had a resection 3 years ago today - that was an unusual Christmas!
i had open surgery and it took a lot longer to recover than keyhole would, but in terms of the liver I've been fine for 3 years. I haven't felt any different or had to change my diet ( I had my gall bladder removed as part of the surgery). Did you know the liver is the only organ that can regenerate? They took a quarter to a third of my liver and it had grown back all shiny and new after six months.
all the very best
Thanks for the reassurance Tomboy! I'm on Letrozole and have Zoladex injections every 3 months (stronger dose but can have it less often), so these would continue after the op. Planning to cram as many nice treats in as I can in the next few weeks before the surgery! x
Thanks Tomboy, your experience sounds positive. My situation sounds similar - my lesion is next to a vein so ruling out radio frequency ablation. My hospital does open surgery as standard, but have gone into a clinical trial so it's 50/50 whether I'll get open or keyhole surgery. Am booked to have it in December. How have you got on since - do you still have hormone treatment / scans?
Has anyone had or been offered surgery for liver mets? I have one small isolated liver met that's been stable for a year and currently no mets elsewhere, and I've now been offered a liver resection. I understand this is very rarely offered/suitable, so wondered if anyone else has had this surgery and how you got on with it?