Breast Cancer Care Forum

Hi Jan thanks for your reply.Sounds like you really suffered with your treatments.This pain in hands and feet doesn’t sound good at all if you get it.I already have Achilles problems in both  ankles that cause pain.Having already stayed in for 7+ weeks  apart from walking dog and getting food in once a week I suppose just the thought of even longer being cooped up upsets me.Last chemo was 3 weekly so 3rd week when feeling bit brighter I would meet up with my sisters and go into town to shop for myself.my 1 sister finishes radiotherapy for breast cancer tomorrow after having an awful time with wound infections and rare reaction to antibiotics that turned her yellow .She has been so ill and I haven’t been able to help her or visit so it’s been very hard to deal with.Now I have to tell them about me needing chemo again and cause more stress in their lives worrying about me.Could do without this happening in my life ! Take care dx ... View more

hi Thanks for your reply.Why do you need to paint your nails?sorry if that’s a silly question.I was told it could be next week even as the unit is quiet at the moment.i asked for time to take all the information in so will ring tomorrow to agree to it .Expected bad news as tumour markers had been rising after such a long time very low.But shocked how big some of the tumours had grown in 3 months.But must be brave and get on with it and hope it goes ok. Best wishes to you dx ... View more

Thanks Wendy glad to know others have had similar experience with this.Nurse I saw today said she hadn’t come across anyone else this had happened to .hope all going well for you Didi ... View more

Hi Kate thanks for your reply.Glad the radiotherapy helped your friend.I had mine done on Monday and within an hour I was vomiting and my pain has increased a lot sadly.Have had 3 and a half hours sleep in 2 nights as can’t find a position to lie/sit in that helps.A nurse has been to see me from hospice outreach team today and has suggested steroids and a pain patch to calm things.  down. so hopefully my gp will prescribe them and they will help.Hopefully my side effects will subside soon and the treatment will have worked.take care Didi ... View more

Hi Sorry you find yourself with this new diagnosis. I get travel insurance with Insure Pink.I ring them up and go through all the questions.I have secondary liver and 1 small bone met.I have paid £115 for a 2 week Mediterranean cruise later this year.I have Denosumab injections for bones every 28 days and on letrozole every day.I always say mine is life limiting and I think they ask if it is curable to which I say no.Im not sure how your iv treatments would affect a quote but worth ringing them to find out.Ihave used them a few times but never had to make a claim so can’t vouch for how well they deal with one.Maybe ask your oncologist and gp about plans to go abroad and if they advise it.and get their advice on how you should answer questions .Helps if you make a note of all dates and treatments since primary diagnosis before you ring up as I find it hard to remember when questions coming rapidly.Be prepared for lots of questions as they have to run through the text on their screen.Boots insurance is meant to be good too apparently.or any that advertise cancer cover probably. I was diagnosed with numerous secondaries in liver in July  2016  and had fec chemotherapy and I am well and still work full time.The letrozole gives me stiff ankles and aching feet but I feel  and look well.If they give you an average prognosis   survival time I wouldn’t be worried as I was given 2 to 3 years and I’m not likely to go anytime soon!! best wishes to you and it does get easier dealing with this devastating news.Didi ... View more

Hi VictoriaSponge, Holidays and sunshine are certainly important to us.I think it will depend on what continuous treatment you are having and how long after treatment you plan to travel . I use Insurepink and ring them up and talk to them so I know they get all the information I can give them about my health.they specialise in Breast cancer patients.I have paid £117 for a 2 weeks cruise later this year in the Mediterranean which I was pleased with.I am 2 and a half years on from a secondary diagnosis in liver and then a year later with 1 bone met.I only have monthly denosumab injections and on letrozole and am pretty well really.I have never had to make a claim with them so can’t vouch for how they deal with a claim . hope you can get yourself sorted and have a wonderful holiday somewhere soon. Didi  ... View more

Hi you need to speak to your oncologist to get a clear answer and put your mind at rest.But they have no way of knowing how the medications will work on you so any prognosis is just an average from probably outdated data. I was diagnosed with secondary cancer in my liver with multiple tumours in 2016 3 years after my primary which I was meant to have a good prognosis from.I had chemotherapy (didn’t need it 1st time round) and on letrozole.In 2017 was told I have 1 small bone lesion too so have monthly Denosumab injections too.Despite this very upsetting and worrying diagnosis and being told by the oncologist my prognosis was 2 to 3 years I am still well and working full time.My GP told me it was ridiculous to tell me a prognosis at my 1 st oncology meeting as how could they know how my body and tumours would react to the treatments which made real sense to me.He should know as his wife has had secondary breast cancer for many many years and she is still here. Although it is devastating to be given this news with the words palliative care being offered which fill your head with awful thoughts,I have learnt to just get on with life and live with it in the back of my mind not at the front which for many months I did.Because I was feeling well going into all this and pretty healthy I think that has helped a lot. Do you live near a Haven cancer centre which offer free help and support?Or any other support networks like that as they can help a lot.I had reflexology at my local hospice when having chemotherapy which helped me. I wish you well and you will find the strength to cope with this as we are all stronger than we know we can be when faced with this terrible disease.best wishes Didi ... View more

Angie so sorry how difficult this is for you but you can cope and life will settle down once the terrible shock of your new diagnosis passes a bit.It is terrible how unhelpful your hospital are at supporting you but sadly it’s common especially with secondary cancer. Could you ask your gp for any help and support in your area?Medication could help you to cope for now and you can stop it once life seems easier to bear. I struggled at first but working and normal routines helped as long as your work isn’t too stressful. We used to go on live chat together a few years ago where ladies always had helpful suggestions for worries/concerns. Take care Didi ... View more

Angie I can’t believe it’s 5 years since we ‘met’ on live chat when we had our primary and now we are both on the secondary site.The shock of this diagnosis will lessen once your treatment plan is given.This site will give you much support and advice.take care Didi  ... View more

Thanks it isn’t the 1st time I have been told things that turn out to be incorrect and I find it so stressful trying to sort these things out.But for this weekend I will just enjoy family time with a big get together for my Aunt and Uncles Diamond Wedding Anniversary and try to forget all the aches and pains and stress that goes with having secondary cancer.Hope you have a good weekend . ... View more

Thank you Margaret that is helpful.I don’t understand why different oncologists give different length of time to be off denosumab before treatment.you would think there would be a national protocol for it. I believe my dentist knows what she is talking about and my oncology unit (at quite a small hospital) maybe don’t come across this  very often so err on the side of caution.Hopefully I can get this sorted out soon. Didi ... View more

Thanks Bon that was very helpful..It is so difficult when oncology and dentist are telling me totally different opinions on what can be done.Hopefully someone will give me a decision soon!Didi ... View more

Thank you for your reply.I have my denosumab every 28day so don’t know what dose that makes it.My dentist and oncology nurse are telling me totally different things regarding any treatment I can have so am very stressed about it.Luckily I am not in pain from it.Didi ... View more

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  ... View more

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 ... View more

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 ... View more

I have used Insure Pink a few times and find them very helpful and got quotes I was happy to pay to go on a cruise.I have stage 4 secondary cancer .I only go in Europe and have luckily never had to put a claim in so  have no experience of how they deal with any claims.Hope you can sort some insurance out soon   Didi. ... View more