Treatment not currently being reviewed, I am now on letrozole which was always the plan to start this after chemo finished. Still having herceptin and perjeta every 3 weeks too. Onc wants me to have a scan before the usual 3 months to see if letrozole has got the rebel cancer under control, I assume if not then he will look at something else.😔
Thank you ems22, sorry you're feeling the same . . and sorry to hear of your phone call, are they going to review your treatment?
It's so hard just to function, as you mentioned your daughter's birthday, I think like this the whole time, and can't seem to get a grip on things.... Doesn't help the fact that I'm tired a lot of the time, went for my injections last week and told them about this fatigue, so they did a covid test. Negative thank God..
I feel very much as you describe some days, I was diagnosed with Mets in April and finished chemo in August, had first ct scan at end of August since treatment began, oncologist rang me with results to tell me some of my cancer was under control and some wasn't, so not the news I was hoping for. Mostly I'm trying to remain positive but it's hard isn't it? My daughter had a birthday last week and I keep wondering whether that's the last one I will see😔.
I keep having thoughts of the end. It's the uncertainty of it all. Lockdown hasn't helped as you are just stuck with your own thoughts. Just know that you are not alone. X
Thanks Vicj, nearly one year on my treatment, palbo and letrazole,I'm due another scan probably the end of this month...
I have been advised by my GP to see a psychiatrist, but can't get my head around that.. it's terribly hard to function, especially around my two young children.. . In the last few days I've started to think about what my final days will be like, ... I'm nowhere near that stage, but that is what is consuming me at the moment....
sorry to hear you are struggling lovely.
after my rousing speech a while back, I confess I am also very up and down now. Kids going back to school has had a big impact - oldest just started high school and makes me wonder if I’ll see the youngest there and can’t shake it.
where are you with your treatment? I am on month 5 of Palbo and letrazole and side effects have kicked in big time - this won’t help your emotions if I am anythjng to go by!
have you thought about counselling? I am told Maggies is excellent and am going to give it a try myself.
here if you want to chat.
Thank you everybody for your replies.... Some people are saying to me it gets easier, but not so sure I agree... Each day is a struggle for me, when I look at my kids, I get so emotional....
it’s an excellent motto!! I completely understand everyone is different and I am actually shocking myself at how calm I am given I turned into a complete nutcase last time!! But you are 100% right - you could get knocked over by a bus tomorrow and that’s it. It’s great to be able to chat with others on here going through the same and to hear such positive messages - you are a role model for us all!
The Covid is ironic - with all the walking I think I am actually fitter than I have been in years!
It takes a longtime to get to that acceptance stage, some people possibly never do but it does help as you can start to live in the moment. I think what brought things home to me was when there was a particular incident in the news (I can’t remember what exactly) and someone, or several people, had died in an accident and I thought how awful it was that they were there one minute and gone the next. At least I should have some warning!
Since then my motto has been Carpe Diem - seize the day. My 2 daughters, who were teenagers when I was diagnosed with secondaries but are now in their late 20’s/early 30’s, live by the motto as well. I certainly don’t sweat the small stuff any more and enjoy the simplest of things on an everyday basis especially when I’m out for a walk which was my chosen form of exercise way before COVID made us all into daily walkers!
hope you don’t mind me jumping into the convo but your post has struck a chord with me. I have been recently diagnosed with liver mets (3 months ago) almost 7 years after my primary diagnosis. I also have two young kids and completely understand and feel your concerns. I think Nicky’s advice is brilliant - my onco told me absolutely no googling stats, it’s all out of date and there are new treatments coming along all the time. When I was first diagnosed I lost my mind - that first year after treatment was a living hell for my husband. But have decided I will not spend whatever time I have left (be it a week, a year or thirty years!) letting it take over my life again. Don’t get me wrong - the demons raise there heads now and again and sometimes I look at the kids and weep openly - but I keep reminding myself I can’t go back to the dark place and it’s helping! I have also decided not to share my diagnosis with family and friends at this time - everyone has enough to deal with with Covid!! But not having people asking me about it all the time is also better. I suspect they are all suspicious as I (the Queen of Prosecco) have stopped drinking!! I am careful not to lie but just share the minimum - my onco changed my meds and advised not to drink. Last time I spent a lot of energy trying to convince everyone I was going to be okay. This time I choose not to do this and spend the energy on the kids and husband instead. It’s why places like this are important to unload!
here if you want to chat anytime. Stay strong lovely.
Thank you both for your replies...with young children, I just see my life flashing by, and thoughts of not being there for my kids is so heartbreaking for me. Thankfully my husband is quite strong and is helping me get through this and helping me focus on the 'now'.
Sorry to hear you now have secondaries but welcome to the forum.
Firstly don’t Google anything regarding prognosis. We are all different, as are our cancers, even though we maybe pigeonholed into our receptor status and therefore treatments.
I have had secondaries for over 12 years now, firstly in the bones and then about 6-7 years ago in my liver. There really have been developments in treatments since I started which have made huge strides in the survival statistics. Something that Googling does not show and why I said not to check!
None of us know how a treatment will work and for how long so it’s difficult to say. Having said that, from my observations of forum users since 2008 when I joined I’d say that people who have a long period of time between their primary and their secondary generally have a good response to treatments. However as I’m not an oncologist, or have a crystal ball that’s just my observation, and, as I’ve said every case is different. The only thing I would say is that, over time, you will learn about how your own cancer responds, it’s what I now know but had absolutely no idea about at the beginning of treatment, I was like a rabbit in the headlights!
Something I have found that is useful is to know about what treatments are currently available for your type of cancer , to keep one step ahead. However many people don’t want to know so it is up to you what you are happy to research (which is where I do say use the internet as you are looking at something specific). Also, if at any time you are unhappy with your treatment choice, made by your oncologist, you are entitled to a second opinion. This is often at a teaching or research hospital where they see far more cases of secondary BC and therefore have more experience than a lot of more local hospitals do.
Sorry you have secondaries/boney mets, I too have SBC which is in my spine, rib & pelvic areas. I was diagnosed with SBC from the beginning, had bilateral BC double mastectomy & straight onto hormone treatment, which has kept the disease stable since! My treatment hasn’t changed and I was initially told that if one of the drugs stopped working they would try something else. There’s new treatments being discovered and def since I was diagnosed. It’s scary when you have young children, but hopefully my experience will give you some hope😊
I’m on Letrozole, Ibandronic acid, adcal d3 & Zoladex injection.
Hope this helps..sending virtual hugs x
Hi everyone, new to forum, i had breast cancer 2003, and accidentally found out last aug I had stage 4 in bones, pelvis, small bit on vertrabe.. .had hip replacement, radiotherapy and am now on hormone therapy and Bone strengtheners . .
I'm just wondering, does anyone else have the same and what time scale are you at. I've 2 young kids and it's heartbreaking to think I won't be here for them... Had scan last week and was told it's stable.
I was told 5-8/10 yrs...