We are Macmillan. Cancer Support
I was wondering if anybody has been in a similar situation to my mom and perhaps could give us any advice or reassuring words/positivity.
My mom is nearly 63 and had a small grade 2 breast cancer removed in late 2003. She had radiotherapy, tamoxifen/arimidex and recovered well and was subsequently discharged from the breast clinic in January this year.
However, for some time she had been experiencing a nagging back pain which none of the doctors thought would be anything serious but they sent her for MRI anyway. To our horror it turned out that she had tumours in T8 and T11 of her vertebrae secondary to her previous breast cancer. She immediately had 5 sessions of radiotherapy and was put on Exemestane and will now have IV bisphosphonates monthly. Thankfully a recent CT scan has revealed no problems in her liver or lungs but we are still awaiting the results of the bone scan. The MRI showed that one of her vetebrae has collapsed/fractured slightly.
We found all this out about a month ago. Prior to all this mom seemed fit and well (apart from the back pain) and had more energy than me (I'm 24) doing all the household chores, caring for 3 boisterous dogs and holding down a busy job. We have all taken it really hard psychologically as it was such a shock. Mom, understandably, has lost confidence with day to day tasks through fear of damaging her back further. She is really shaken up and has become very nervous. The consultant has said she can return to normal now along as she is not doing anything too strenuous. I hate it that she having to go through all this again, it has cast a real shadow of uncertainty over our lives. Over night life has become very hard and mom, myself and my father are all very depressed and finding it hard to get things into perspective.
How can I best provide comfort and reassurance to my mom? I am at university at the moment and hope to graduate as a doctor in 3 years time. Mom wants me to continue with the course as normal but I feel guilty being away from home and am finding it hard to enjoy life as I did before. I lie awake at night and fear how the future will turn out. We are so close I couldn't bear to loose her this soon or see her suffer.
Can people still live a long time with this sort of secondary breast cancer? I read somewhere that life expectancy after diagnosis is 2 years which freaked me out. One of the consultants said people can live up to 15 years with bone cancer bit we seem to have had varying opinions which is disconcerting. I know it probably depends on the individual.
Any advice or support would be much appreciated,
Firstly, sorry to hear about the secondaries that your Mum has. Have hope though as it sounds as though they've put her on the right treatment pretty quickly. My wife Vicky was diagnosed with Stage IV nearly 5 years ago and although she has some issues due to the late diagnosis, she's still getting around and doing things.
With regards to your studies, although I'm sure your Mum would like you around a bit more she'd probably feel guilty if she thought that you weren't going to continue because of her. It is difficult to carry on as before but that doesn't mean that you can't to a certain degree. The worries you are having are quite normal but I would suggest talking to a counsellor if it's causing you to lose too much sleep or is affecting your daily life. (I did and it has helped me immensely at a time when I was losing the ability to cope on my own).
All the best,
Thank for your reply stuart it was very helpful. It is encouraging to hear that your wife is still doing ok after 5 years. Things seem a little better now that we know there is no liver or lung involvement and mom is feeling generally ok apart from a few niggling pains which are probably the backlash from the radiotherapy which will hopefully wear off. Best wishes to yourself and your wife and thanks again xx
sorry I didn't spot your post last week. I just wanted to post and offer some encouragement to you and your mum. I know it is shocking when you are first told the cancer has spread. My first diagnosis was back in 1990 - a lot of history over the years but in 2002 I was diagnosed with extensive spread to my bones. It went to my skull, ribs, collarbone, all areas of spine, hips and pelvis. I really thought I had little time left, and what there was would probably be in a wheelchair!!! But life has gone on pretty well as normal for me :). I had some radiotherapy initially to the worst bits, then went on bisphosphonates every 3 weeks and it has kept my disease stable. I hope your mum is more comfortable soon- but it is true initially the radiotherapy can make things worse before they feel better and that can take a few weeks. I am sure your mum wants you to keep up your studies and not worry too much - easier said than done I know but honestly with bone mets no-one can say how long we have but with the treatments we have available these days it is becoming more and more regarded as a chronic disease and people can live many years with it. Is your mum aware of the benefits she can claim. It is possible for her to still put in a claim for Disability Living Allowance (DLA) - this claim has to be made before you reach 65 but then continues as long as your condition remains. It is best to claim it under DS1500 Special Rules and her oncologist, macmillan nurse, or GP can sign that. Don't be alarmed because they will be stating on the form that she may have less than 6mths - that is normal and even the DWP recognise many of us live longer than that because they review after 3 years!! If I can help any more please do ask, or private message me.
I have just been diagnosed with secondary mets along my spine with large collection on my sacrum. I have had the radiotherapy and although it really made my pain worse for a while with the help of the McMillan pain nurse it is now alot better.
My daughter is just starting her GCSE exams and is also very worried but I try to put her mind at ease the best I can but that's like saying stop breathing while it gets sorted. My advice is for you to follow your mums lead, she will feel better if she isn't worrying about you worrying. Just do the best you can and if there is one available go and talk to a counsellor at Uni, it may help just to tell a stranger what's happening and how you are feeling.
I don't know what treatment I'll be on or the answer to the big question, but I take every new day as it comes and count the many blessings I have in my life.
I wish you well and am very happy to talk to you again even by private message if you want.
Love Vee. xx
Sorry for the late reply have been busy with uni work etc. I was very grateful that you had taken the time to reply-it is very kind of you, although sorry to hear that you have experienced similar things to my mom.
It was very encouraging to hear that despite your setbacks you are still living a relatively normal life with the treatments. I told mom about you and she was encouraged by what you said. She is starting to get back to normal a little now, although I think because she is not working and has alot of time to herself she is noticing aches and pains she did not have before. We have the macmillan nurse visiting soon so hopefully they will be able to give her further advice on pain management etc. Thank you also for making us aware of the disability allowance.
If we need any more advice I will certainly message you. Thanks again for your kind support.
Thank you very much for your response, it was kind of you to take the time to reply. I was very sorry to hear of your recent diagnosis. It is encouraging to hear that your pain has now settled with the help of the macmillan nurse.
I sympathise greatly with your daughter but I am sure with your positive attitude you will both continue to do very well. I have taken what you have said into account and appreciate it very much. I think you are right when you suggest taking each day as it comes and being grateful for everything that we do have.
Thanks again for the supportive message and I wish you and your family well also. Feel free to message me anytime also.
I have been in receipt of DLA for a few years now under DS1500 .You can either claim the usual route which involves a lot of form filling or by asking your Consultant, GP or macmillan nurse if they will fill in a DS1500 form for you and help with the other forms. I think I explained further up in this thread about it but the advantage of doing it this way is a lot less form filling, and usually the claim comes thru much faster although with the cutbacks I do know that quite a few people have had problems. It is best to ask help in completing any of the forms and usually the macmillan nurses are best at this. Sometimes the DWP grant both parts of DLA at the highest rate when it is done with a DS1500 - the Care element and the motability element. You can also apply for the Blue Badge. Have a go and reading up a bit more by googling.
I've had breast cancer now since 1990 and bone secondaries dx in 2002. Goodness knows how long it had been there because when it was found it was in so many places. I am now on zometa and herceptin plus rather a lot of pain meds because my spine gives me grief now!
If you have any questions about Macmillan we would love to hear from you
You can also follow us on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2014
what are these?