Hi, I haven’t been on the forum before. I had breast cancer diagnosed in 2004 (mastectomy, lymph nodes, one had burst, chemo, radio, tamoxifen)
I’ve just found out this week that what I thought was backache is secondary cancer in my lungs, a rib and possibly on my head.
I’ve only had x rays so far, the scans are next week, the hormones have been changed and i’m on zoladex.
Enough technical stuff what I really want to know is, is any one else in this sort of situation and how do you cope? The doctor said it’s short to mid term treatment.
I have a wonderful husband, we only got married last June after meeting 7 months before. I have gorgeous 7 year old twin girls from a previous dreadful relationship. My life has only been fantastic since I met my husband and we feel desperately cheated by this news.
Sorry if I’m too long winded, I’m looking forward to hearing who’s out there.
So sorry to hear of your secondary dx and that you have to join us in this “very exclusive group”. I have had tremendous support though from this forum and hope that you will find similar support and encouragement.
I have liver mets (picked up last May/June nearly 5 years after my primary dx) and have had chemo since then. They originally thought it might be operable but then discovered there were too many mets scattered throughout the liver. Currently on Megace alone, another hormonal therapy and am feeling pretty well - back at work again and doing most things I was doing before (have dropped some of the ones I didn’t like doing!!).
Initially I found it very difficult to cope and to have hope for the future but things do settle down to what can be described as a “new normal”. Although there are obviously no guarantees as to how any one person is going to react to any one particular treatment, there are many ladies on this forum who have been living with their mets for quite a few years (hopefully some of them will post on this thread) and for whom certain treatments have been extremely effective. That gives me hope certainly that I can do the same. I still have bad days but they are out-numbered hugely by the good days - I also plan lots of days that are going to be fun!
Think you will feel better when you know exactly what the treatment plan is following the scans - you are currently in what is often called a “limbo land”. Which scans are you having?
Do let us know how you are doing and ask questions - as well as there being a lot of support, there are also some really knowledgeable ladies! And meanwhile, just be kind to yourself.
Hi So sorry to hear your news. It is always very frightening to be diagnosed with secondaries.
I have lung, liver, bone and other ones in my lymph system. These were diagnosed in sept 06, having previously been primary diagnosed in april 05. I have twins who are nearly 11 and another son who is nearly 8 and for me, my children give me a reason for fighting for every available treatment available.
I have 2 types of lung tumours - one called lymphangitis which means it is wide spread throughout all my lungs and now have a huge solid tumour.
It sounds as if you are hormone positive so that means it gives you other options of changes of hormonal treatment as well as chemo. Are you herceptin positive or not? They may not have tested for that when your original diagnosis was made so you need to find out about that too as herceptin would be another option.
When you say ‘in your head’ do you mean in your brain or in the skull - bones?
It is awful waiting for test results - in the end you don’t know what is the worst - the results or the waiting!!!
There are lots of brilliant people on the site who will be able to give you good advice especially when you know the result of your scans and the treatment plan.
I have found being as honest as possible for the children’s age with regard to my treatment and how I am feeling.
The ask the nurse service here is brilliant as well.
Presumably, they will start you on bone strengthening drugs (biphosphonates) to help stop the growth and make the bones stronger.
Really thinking of you and hope I can be of help to you in the future.
Kate
Just echoing Kates and Kay’s words. You will find enormous support here from some very knowledgable women who are all living with different secondaries. I have lung mets-diagnosed a year ago and stable. Thinking of you in that horrible waiting time-I always feel better when I know exactly what the next treatment’s going to be.
Nicky xx
HI Kara,
So sorry you had to join us too! There is tremendous support on this site from people in similar but different situations with similar fears to share experiences.
I was only diagnosed with secondaries in my lungs and lymphatic system 4 weeks ago following a routine scan with no symptoms so am still getting my head round it.
I have started on weekly taxol with fortnightly Avastin now and once a treatment plan was in place I have found it easier to cope with and just try and face one day at a time without panicking too much of what maybe ahead.
Waiting for results and treatment plans is the worst time I feel so I do wish you the best for the scans next week.
Hi,
Thank you so much for your replies. It is quite overwhelmingly fabulous to know there are other people with this getting on with their lives.
I was herceptin negative so that’s not an option, and kind of halfway oestrogen receptor positive so that’s why I’ve been told try hormone treatment for a few months keeping chemo for if that fails.
I’m really interested to know what anyone is doing with their diet. I half heartedly tried the Jane Plant thing first time round but only kept up the bits I like! I’ve been recommended barley grass powder and the boiled juice of linseeds. I understand making your body more alkali to be inhospitable to the cancer can be really helpful.
I’m having a bone scan on Tuesday and CT scan on Friday.
I’ve been prescribed painkillers which seem to really help but I’m a bit worried about taking them all the time, though it does really help.
In the meantime my husband has bought a gorgeous VW camper to keep us all out and about for picnics and fresh air with the dogs!
Hello Kara, and welcome to the forums. I am sorry to hear your news, especially as you are so recently into your lovely second-chance relationship with your lovely man. at least you have a good man beside you for support and to help you with your children when you need practical help.
I was diagnosed last march with primary bc and very soon after found i have liver secondaries. It’s all responded well to chemo (all the rest of last year), and now I’m back at work and just having Herceptin every 3 weeks, and tamoxifen by mouth. I feel very well in myself, and intend to keep receiving successful treatment for many years from now! I have 3 children.
Feel free to come on here and ask any question (there are no stupid questions) and have a rant if you need to. There is always someone to give you some support,
Good luck for the scans, and be sure to let us know your results,
Jacquie x
I have secondaries in my bones and lungs (diagnosed last June), had taxotere last year and now on zoladex and tamoxifen. Due to have my ovaries removed soon. As everyone else has already said you will find great help and support on here. It is invaluable. No matter how good family and friends are (and mine are fantastic) no one can really understand like someone else in the same predicament.
Good luck for you scans. I have another one due on 26th March. Waiting for results is always an anxious time.
Hi, thanks for the messages, each one is helping loads as we keep feeling really panicy and tearful but this is helping.
I’m 34 and didn’t expect to find many other young women in this section.
Kara
I am always sorry to see new names on this forum. Welcome, and I hope you will find this site as helpful, friendly and supportive as I do. There is almost always someone who will know some answers to your questions, we rant loud and often, and long-winded is good! I look forward to getting to ‘know’ you. Take care.
Hi, How are you doing? I wanted to ask are you quite breathless. I spoke to you on another thread about my Mum she also has lung mets and Lymphangitis. I am very worried as her breathing doesn’t seem to be getting any better with chemo. She had plerodesis 12months ago and we all thought her breathing would be easier. She is ok when she’s sat down but if she has to go upstairs to the toilet she is out of breath.
I am so worried about her I can’t stand anything happening to her
Hi Kara
Just wanted to add my post, as just back from holiday. i had lung mets diagnosed 18 months ago and have had hormone treatment, FEC and lately Vinorelbine. I have also just had a pleural effusion drained and Pleurodsis done. Having said which I have just been skiing , somewhat breathlessly !! i am also back at work. I see my oncologist on Tuesday so I am hoping that he will have some encouragement about my breathing. Hope all is well with you
Kathryn
Hi everyone,
I’m feeling pretty low this week. I have quite a lot of pain in my side and sometimes get headaches with fuzzy vision. I had bone and CT scans last week but my next consultant appo isn’t till 15th april. I just feel I can’t do anything, I feel so uncomfortable. I feel sad that my girls have had all their fun times with other people this holiday.
It seems to me that the hospital dumped this news on me then leave me to get on with it. The breast care nurse just sits and looks at me when I see her, nobody is forth coming with any help. I don’t really know what help I need or what is available. I just feel tearful and uncomfortable.
Kathryn, you sound amazingly strong, how did you manage skiing? I couldn’t even manage shoe shopping with the girls yesterday.
Kara
Dear Kara
I think the reality is that everyone has their down times, although I was ski ing last week I spent much of one day in tears as I had so much pain in my affected lung and I was so breathless. I also ended up losing it wth the kids as their is an impression that mum will just get on with it, part of me thinks that they should show more concern, although I know full well how worried they really are , and the other part thinks that they should be concentrating on their normal self centred teenage lives!!
Have you any more info from your oncologist about the extent of your lung involvement or treatment options. I think that the not knowing and waiting in limbo are the worst. At least once you know what exactly you are dealing with then you can plan.
I don’t know whereabouts you live but you may have seen from another thread that some of us with secondaries are meeting in Guildford.
Again I think that one of the worst parts is the isolation as family and friends however loving and well meaning haven’t really got much idea of what it is like in your shoes. I am looking forward to meeting others
Hope all goes well for you
Kathryn