Best Of
Re: Newly diagnosed metastatic cancer
thanks for the update @Rhubarb21. My regime if treatment which included some targeted radiation on the bone mets took about 6 mths to slow my bone mets to now no changes at each scan. Onc did say with my age and response to treatment it will probably be something else that takes me out. Gave me the average of possibility up to 20 years. Without any other health issues not related to the mets
best of luck with the treatment working.
best of luck with the treatment working.
Oh yeah I get the same comment re looking well. My smart ass answer is thanks I try my best. Just wish my insides looked the same.
Re: Newly diagnosed metastatic cancer
Thanks for your update @Rhubarb21. I get people saying to me i look good too. It's a common thing said when we have metastatic breast cancer. I guess people just don't really understand what it can be like for us. I say to those people, the real question to ask is ' Do you feel as good as you look?'
Mets is hard. I don't have as many bone mets as you but I have it in my liver too. One of the ladies in my support group has mets in so many of her bones and she has been metastatic now for 11 years. My oncologist says it doesn't matter where the mets are as long as treatment halts progression. That's what we want for as long as possible.
So pleased you have your kids support. None of us could manage without our nearest and dearest. One thing I did was to stop thinking I was dying. I started off like that when I was first diagnosed with mets. Then I thought that I am not dying (not yet). What I am doing is living with metastatic breast cancer and i am living well, as best I can and it makes life for me far more enjoyable. Keep enjoying life, keep doing everything you love and being with those you love.
Mets is hard. I don't have as many bone mets as you but I have it in my liver too. One of the ladies in my support group has mets in so many of her bones and she has been metastatic now for 11 years. My oncologist says it doesn't matter where the mets are as long as treatment halts progression. That's what we want for as long as possible.
So pleased you have your kids support. None of us could manage without our nearest and dearest. One thing I did was to stop thinking I was dying. I started off like that when I was first diagnosed with mets. Then I thought that I am not dying (not yet). What I am doing is living with metastatic breast cancer and i am living well, as best I can and it makes life for me far more enjoyable. Keep enjoying life, keep doing everything you love and being with those you love.
Cath62
4
Have you had withdrawal side effects after stopping Arimidex!
Hi everyone
It’s been a while since I’ve been here!
I saw my oncologist on Tuesday re stopping Arimidex. I was thinking of stopping anyway but Arimidex being discontinued gave me a little push.
It’s been a while since I’ve been here!
I saw my oncologist on Tuesday re stopping Arimidex. I was thinking of stopping anyway but Arimidex being discontinued gave me a little push.
When I had my mastectomy in August 2016 I was told I’d be taking Arimidex for 5-10 years although my oncologist told me on Tuesday that new studies show that 5 yrs is sufficient and the harm to the body (bones, heart, skin etc) outweighs the benefits of staying on it for more than 5 years.
Anyway, it’s been 8.5 years for me and I’ve taken my last pill. The specialists are happy with my cancer markers, scans etc.
Anyway, it’s been 8.5 years for me and I’ve taken my last pill. The specialists are happy with my cancer markers, scans etc.
I’ve been lucky that I’ve had minimal issues whilst taking Arimidex. Of course, bones aren’t great, there’s a few extra kilos but not the problems I’ve heard others have experienced.
But, a couple of days after stopping I’ve felt light headed and a bit nauseous.
But, a couple of days after stopping I’ve felt light headed and a bit nauseous.
I’m wondering if it is a withdrawal from the drug?
Has anyone else been on Arimidex for a while and suddenly stopped?
Did you feel normal or did you notice any unexpected withdrawal side effects?
I was told after stopping Arimidex that I should notice an improvement in my energy levels and general well-being in about 2-3 months. Let’s hope so!
Jane x
Has anyone else been on Arimidex for a while and suddenly stopped?
Did you feel normal or did you notice any unexpected withdrawal side effects?
I was told after stopping Arimidex that I should notice an improvement in my energy levels and general well-being in about 2-3 months. Let’s hope so!
Jane x
Re: 16 Weeks Pregnant and diagnosed with aggressive hormonal breast cancer
Oh @Emma1113 I wish I could give you the biggest hug. I’m so sorry this is happening to you at what should be an exciting time for you. I have nothing much to offer you in the way of comforting words, but I did meet someone going through a similar situation to you. I am 44 & have 2 older children & was feeling very hard done by when I was in the ward recovering from my second surgery to remove lymph nodes. Across from me was a lovely younger lady who was diagnosed during her pregnancy, she had a safer? chemo up till 36 weeks, then Bub was delivered. She had her husband & her Mum caring for Bub back at home & she was now having more aggressive chemo. I felt like I had nothing to complain about. All I can offer is to reach out to your support network & ask for the help & caring you need right now. The BCNA hotline is amazing, if you don’t have a McGrath nurse, look up the website & access one - public or private they will support you. Rest & be selfish.
Thinking of you xo
Re: 5 Years on...
Congrats @Harvey1903 on your 5 years clear xx Great news.
My diagnosis Anniversary is 7 years on 5th January 2025 .... still going strong xx
take care & all the best
My diagnosis Anniversary is 7 years on 5th January 2025 .... still going strong xx
take care & all the best
arpie
4
7 year diagnosis anniversary is today ..... how time flies!
7 years ago today, I learned that I had Invasive Lobular Cancer after a clear NSW Breast Screen just 6+ months before. My GP had found the 'lumps' back in Oct & it took until 'now' to get the results! ... (I'd had a 2nd 'failed' Mammogram and ultrasound in the mean time that didn't find the tumours ... and on the suggestion of the pathology report, finally arranged for the biopsy between Xmas and New Year.)
I was out yak fishing when my GP's office rang to arrange an appointment (as I had been diagnosed with cysts some 40 years earlier .. and I'd convinced myself that it was just cysts again!) How wrong was I?
And so ... the 'treadmill of discovery' began! That same week, I joined BCNA (on the advice of a buddy in Qld who was 4 years into her own diagnosis) and the journey began!
Over the last 7 years, I've received the most wonderful support and advice from members and Mods here - and I have made firm friends on the forum - even connecting with some, in the flesh, outside of the blog!
For those starting out - take plenty of deep breaths .... and definitely take a friend with you to all your early appointments (and record them as well ... I did!) Ask ANY question of us that pops into your head & we'll do our best to explain it all to you in 'plain English' .... and hopefully smooth the way for you.
I was lucky to get the first appointment with my surgeon after his return from Xmas Holidays - and had my surgery in Mid January ... arriving home again a week after and healed well.
Take care, and wishing you all the best
I was out yak fishing when my GP's office rang to arrange an appointment (as I had been diagnosed with cysts some 40 years earlier .. and I'd convinced myself that it was just cysts again!) How wrong was I?
And so ... the 'treadmill of discovery' began! That same week, I joined BCNA (on the advice of a buddy in Qld who was 4 years into her own diagnosis) and the journey began!
Over the last 7 years, I've received the most wonderful support and advice from members and Mods here - and I have made firm friends on the forum - even connecting with some, in the flesh, outside of the blog!
For those starting out - take plenty of deep breaths .... and definitely take a friend with you to all your early appointments (and record them as well ... I did!) Ask ANY question of us that pops into your head & we'll do our best to explain it all to you in 'plain English' .... and hopefully smooth the way for you.
I was lucky to get the first appointment with my surgeon after his return from Xmas Holidays - and had my surgery in Mid January ... arriving home again a week after and healed well.
Take care, and wishing you all the best
arpie
10
Re: Radiation
Hi @slonimski I was given sorbolene cream to use, a large tub and a tube. They told me to use it at least 3 times a day, the small tube was for immediately after treatment and when you are out and about if you feel like you need it, and for at least 2 weeks after. I slathered it on and had 15 radiation sessions. My skin had a slight blush when I had finished, and a tiny itchy patch on my chest which only lasted a few days. I finished 2 weeks ago and it all feels fine, just a slight skin colour change when you compare the pair. I'm using moogoo now for a change, and I think it helped the itchy patch.
Katie46
1