Hi Everyone
I originally used the website after my primary dx in Aug 07. I finished active treatment a year ago and never thought that i would be back here this quick. I was DX on Thursday with Bone mets to L7 & 8. I am seeing the onc again on Wednesday and need to get my head a round a few issues, I wondered if some of you may be able to help.
The onc is proposing 5 blasts of radio therapy, a switch from tamoxifen to letrozole (continuing with zoladex until i get my ovaries out) Bonderat orally and calcichew.
Does this sound like a reasonable plan?
Should i be asking for a biopsy?
Is bonderat a good bisphosphonate or are others better and should they be oral or IV?
Is Letrozole a good AI or are others better?
Should i be pushing for chemo, or is it better to keep that option in reserve?
Are there other things i should be asking?
What is the range of life expectancy with bone mets?
Finally the biggy i have 2 children age 9 and 12 and was honest with them during my primary dx but i am now at a loss as to what to do. What do i tell them, when do i tell them what do i tell them? I really struggling with this at the moment as it has all came as a bit of a shock. I don’t really know where to start.
Thanks for listening
X
Hi fuzzyface
Many of our users find it difficult to find the right way of talking to their children about their diagnosis so you are not on your own with your concerns about the best way to approach the subject.
Breast Cancer Care publishes a book entitled ‘Mummys Lump’ which you might find helpful to read, it focuses on the subject of talking to your children about breast cancer.
The book can be ordered from the website following this link and many of our users have found it to be a useful resource, I hope you do too:
breastcancercare.org.uk/server/show/nav.715/changeTemplate/PublicationDisplay/publicationId/18
Kind regards.
Louise
Facilitator
Hi…and I’m so sorry you have to join us. I was diagnosed with bone mets in 2003…my story is on my profile if you want to click on my name. It sounds a good plan by your onc. My understanding is Letrozole is very similar to Arimidex, I had nearly 3 years remission due to a great response to Arimidex. I also take the oral Bondronat, it’s a good bisphosphonate…last snow falls I went crashing down on a pavement and was fine…thanks, I think, to Bondronat. I also take calcium tablets. As for life expectancy…well I just keep plodding on…I was diagnosed stage 4 from the start when my hip spontaneously fractured. I had a very succesful hip replacement and 6 years on I truly do feel great, no pain killers required. I had the first years on hormonal treatments and have been on my first chemo, Capecitabine (Xeloda) for nearly a year now. As for telling your children your diagnosis, I’m sure you’ll get lots of helpful and caring advice from others here with younger children, my daughter is now grown up. This is a very supportive forum, you will get much help, advice and friendship here. Pasted below are some words I’ve found really helpful over the years since my diagnosis. They are taken from the advancedbc.org website. Good Luck with your treatment…x
Many doctors are reluctant to quote mortality rates or statistics on survival time to patients, preferring to tell them, rightly, that no one can know for sure how long a particular patient will live, and that mortality statistics are based on large groups, and are to be used to weigh decisions about treatment, not as predictors of individual life expectancy. They will explain that since you are an individual, there is simply no way to predict, with any certainty, whether you will be in the larger group that will succumb to breast cancer within the predicted period of time, or the smaller group that lives for many years with it as a chronic disease, or even survives to die of other causes. While initially frustrated, many patients are ultimately able to transform this uncertainty into an opportunity for hope.
Hi
So sorry you have had to join us in the secondary forums.
I have secondary liver mets, and was diagnosed with primary and secondary at the same time. I am 41 now, and have a 5 year old daughter and 2 year old son.
I cannot help with bone mets but am sure you will get lots of answers to your questions from everyone on here in a similar position to you.
With regards to telling your children, this is a topic that bothers me too, as I think mine are too young, but obviously my eldest knows that I have hospital visits etc. Such a tricky thing to get your head around and know wot to do for the best.
I hope you get some answers on here and from your onc, and that your treatment works wonders for you.
Take care and lots of love
Dawn
xxx
Hi fuzzyface,
I can understand how much of a shock it must have been for you to get a secondary diagnoses such a short time since your primary. I am a bit puzzled by your reference to L7 & 8 as i think there is only L1-5. Do check this out with your consultant when you see him. I agree with Belinda in all that she says about stats and how long you have left!! We are all so individual and very few of us will be average. I was dx with breast cancer in 1990 and had several new tumours and recurrences and dx with bone mets in 2002. Mine is very wide spread throughout my skeleton. I am on IV bisphosphonates which have worked very well for me. At least with oral bisphos you dont have spend a few hours in hospital. If the pain gets particularly bad then radiotheraphy can help control the pain. I have had it to a couple of areas - hip and neck and it was very successful. More recently to the other hip and lower spine and did not have such a good response. But the damaged bones have responded very well to the bisphonates.
Do ask away here with anything you are not sure about. There are quite a few of us with bone mets.
Dawn
xxx
Hi Fuzzyface
so sorry to read of your diagnosis with bone mets. I would also agree with the advice given by Belinda. I was diagnosis with breast and bone mets, at the same time, in March 07. I have been on Letrozole and Zoladex since then. I have had no progression of my bone met(L hIP), I have no pain and continue to work ful-time. My children were similar ages to your two children when I was diagnosed.
I have not experienced any problems with Letrozole, apart from the hot flushes and slight joint stiffness first thing in the morning. I was on bisphophates IV but due to GI up-set I am current not taking any. I last took them in Oct and my Bone scan in JAN showed no evidence of active disease… so the Letrozole and zoladex must be doing something.
I know when I was first diagnosed I was in a very dark and scary place. I didnot find this site until 6 months later and let me tell you the advice and support offered has been a life line on many occassions…I will never be able to thank many of the ladies enough, especially Belinda.
It has taken me along time to adjust to what has happened but with the support of my family I have and I hope given time you will too.
Take care
Hi everyone
Thank you very much for your responses, its good to hear from others. Dawn you are right it’s L4 & 5 obviously my brain is affected lol.
At the moment i am really frightened and scared for my family. I realise that things could be stable for some time or progress rapidly, but irrespective of what happens i am unlikely to see my kids grow up and have a family. I worry about how my husband will cope when I’m not around and my poor parents are in a bit of a state at the moment.
I need to get my head round how to handle things with the kids. I was honest during my primary dx and said i would always be, so my inclination is to speak to them but my husbands not so sure. I think they are bound to pick something up, i don’t know how to go about it or what to say as the death question will definitely come up. It would be good to hear what others have done.
Thanks again, i hope to get to know you all a bit better, might even try live chat if i can get the kids out of the way long enough.
Love
F
X
Hi,
Your treatment sounds very similar to mine. I was dx with primary in Sept 06 and bone mets in October 08 after months of anti-inflamms from my GP for muscle strains etc in my right hip. Eventually it fractured whilst I was walking across my lounge and the dx was made after x-rays and a bone scan.
I am 40 and my children are 5 and 8. Like you I was very open and honest about my primary treatment - I think because I saw that it had and end to it. Everything that was done - surgery, chemo and radio- had a reason and a fixed time scale so it was easier for them to deal with. This time I have not been as honest with them. I told them that I had a bad leg because I had broken a bit of the bone and the pinning surgery was to mend it. They know I take tablets every day (Bondronat and Arimidex) and I have said they are to help my bones heal - which is true. I have regular physio appointments which are improving the mobility and strength in my leg so I am gradually able to do more with them, but of course I will never be the same as I was.
I think because we have no idea of the progression of this disease it is not right to tell them too much at this stage because they will just be frightened by too much information. Although they are remarkably resilient and handled my hair loss and my hickman line better than I did!
I too am having Zoladex - 3 monthly. Are you on monthly or 3 monthly? I would be interested to know how you get on with that. I have bad hot flushes at night, but otherwise it has been fine. My onc gave me the Bondronat tablets because I had such problems with my veins during chemo and needed the hickman line. My GP gave a sharp intake of breath when he saw on his computer system how expensive they were, but has not queried my prescription.
OOPS! Just had a power fluctuation because of a storm so I thought I would submit my post before it was lost!
I too had 5 blasts of radio on my hip after the repair surgery and although it made the pain very bad for a couple of weeks after that was quite normal and strong painkillers helped that. I now have no real pain from the actual cancer - just stiffness from the effects of all the bits of metal holding it together. I use a crutch when walking away from the house, but the physio says eventually my leg will be strong enough to do witout that.
I have my next check up next week when I will find out the results of some blood tests that have been done to measure the bone markers. Hopefully if the treatment is working they will have reduced. I will let you know.
One thing that children do (and I am sure you found this last time) is help to maintain normality at a very frightening time. I couldn’t have managed without them. I work 3 days a week at a job that I love and try to carry on with my life as normal.
I think it is impossible to predict a life expectancy in our situation, but my GP said it would not be unreasonable to still be around in 10 or more years - if the bm’s are kept under control. I don’t know if that is true, but it is what I hang on to.
I hope your treatment works well for you and Good Luck for your future. Sorry if I have gone on a bit - this is the first time I have done this!
T1nker67
Hi T1nker67
Thanks for the post its really useful to know what others have done about telling the kids. I saw the onc yesterday and he is going to arrange for my husband and i to speak to someone about talking to the kids. I think you summed up well the difference between telling them about a primary and a secondary diagnosis. I just worry that my eldest will pick up that somethings going on and i would hate for her to find out that way.
I am on the monthly zoladex, have been for just over a year. I have suffered for very bad hot flushes and terrible vaginal dryness, must admit sex drive has also gone on holiday. Onc yesterday made the referral to gynea to get my ovaries out as i can only be on zoladex for 2 years and he wants them shut of permanently.
Started the bonderat 2 days ago and felt really sick yesterday but i expect that will settle down. I was working full-time but i need to rethink that. As you say they can’t predict how mets will develop and i don’t want to have spent all my time away from the kids.
Good to speak to you, let me know how you are doing.
Take care
F X