diagnosed with secondary breast cancer in liver before the primary was found all found by chance. In the space of a week had all the scans, a diagnosis and a treatment plan. So much to take in and my head is spinning I still can’t believe this is happening to me as it’s still all sinking in. The ladies in one the the other forums suggested I try this forum. Just need to chat with people who have been through a similar thing and who understand that I just want to try and keep things as normal as I can
Hello Lily
Looks like u r stuck with me again as the first person to read your posting .
Welcome …you will find support here which does help a bit …what we need is a magic bullet treatment for the cancer but until it happens we deal with our worries and side effects as a family.
The threads are a bit quiet but its the festive time still and a lot of our ladies are busy.
I think u will find the bone Mets …please join in thread the better option as its one of the busier ones but once u know the treatment plan you will find other threads to help you through it all.
If u do feel a bit social now …ask to join the private forum …as behind there is other threads to help you …
Anyway …sorry it’s me again …come on other ladies where are you to welcome our new recruit into the rollercoaster land of secondaries.
Carolyn xxx
That’s not good, my liver is a mess on the scans but primary is tiny. It was only in two lymph nodes.
Agree don’t know if will fully come to terms with it certainly haven’t after 6 weeks. I’m just trying to carry on like normal and live my life the way I normally would not made easy by still doing rehab for ortho surgery (unrelated). As I said to everyone it is what it is and need to just get on with it.
Hope you are doing ok though
Hiya Lily
You haven’t mentioned the drugs you are taking …we have threads for most of them which will be very helpful for any ( hopefully none) side effects …I’m thinking if you have liver Mets its going to be a chemo treatment like cape tablets maybe ? If so under " treatments " there are some excellant threads for help and support.
Carolyn xxxx
Drugs they are giving me are zoladex (to induce menopause) and letrozole all hormone Therapy I think - so far all issue I have is sore muscles and joints. Oh and putting on weight none of which are great but hoping they settle down soon.
Ortho issue wasn’t related to bone damaged tendons from running and thankfully they never picked anything up and have had X-rays and MRIs of hip, oncology checked them as well when all this was discovered.
They gave me option to get ovaries removed after scan to see if letrozole is working - think I would rather do that than keep getting the injections.
It’s great to hear positive things about letrozole on here, thankfully have not experienced hot flushes yet just aching joints and weight gain round middle - which I’m hoping will settle down.
Consultant tells me they have patients who have been treated for over 20 years - so hears hoping.
Just trying to live life as normally as I can, friends have been fab and work has been great as well. They are even appreciating my dark sense of humour now.
It is really good to talk to ladies affected by the same disease, unless you have something like this you don’t understand,
Hello Lily
Welcome to the letrozole club …I have been on it for 15 months for my extensive bone Mets too. I also have denosumab injections for my bones too.
Julie is having a very long run and success with it and I take inspiration from her that it will work a long time for me.
There are side effects but its a bit of mind over matter really …I take daily cod liver oil to help with the creaky joints . I did find my hair thinned lot at the beginning so stopped having highlights ( grey bag lady now) and avoided washing it too often and also hair straigtners.
Also the brand of leyrozole varies a lot so you might have to try a few different ones that suit you better.
Hopefully …that is enough info for you to take in …it’s all scary at first but you find as time goes on …it all becones the normal daily lingo !!
Carolyn xxxxx
Thanks for this it is my joints that are the biggest issue and a bit of abdominal bloating.
It’s great hearing good news stories about how long it can work for. Take cod liver oil and evening primrose oil - heard they may help so fingers crossed. Nurse recommended hot bath with alka seltzer salts - but be great if my hip let me go in bath yet so will try that when I’m able
Hiya Lily
I’m not sure about evening primrose oil with leyrozole though? Thought epo boosted oestrogen and so will work against letrozole?
Maybe Julie will be reading and be able to clarify that as she has so much experience.
I might have got it wrong though.
I have a walk in shower too …miss my luxury bath soaks but would struggle too getting in the bath now.
Xxxx