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Secondary Breast Cancer as a chronic illness? Any positive stories?

13 REPLIES 13
grose_c94
Member

Re: Secondary Breast Cancer as a chronic illness? Any positive stories?

Hi Louise 🙂 I hope you're doing well.

 

I've just finished docetaxol, it was really tough but definitely worth it. I'll now be moving to just having phesgo injections every 3 weeks and taking tamoxifen and having the zoladex injection monthly too.

 

If you can, talk to your team about using a cold cap? I used one during chemo and even though my hair has thinned I do still have a lot of it which has helped mentally through treatment.

 

Wishing you all the best x

Loulou1007
Member

Re: Secondary Breast Cancer as a chronic illness? Any positive stories?

Hi Gail500

Thank you for you story and so pleased that your cancer is contained in the bones and that you are only on first line treatment. Unfortunately when cancer moves to tissue it is a totally different story. My hope and wish is for my liver and lung cancer to reduce or stablise as no treatment has worked for me 100% to date. It definitely feels like a death sentence.

I wish you continued Success.

louise x

gail500
Member

Re: Secondary Breast Cancer as a chronic illness? Any positive stories?

Hi Louise, I was diagnosed with primary and secondary breast cancer in January 2012 so 9 yrs ago. My secondary cancer is confined to my bones but widespread in spin, ribs and pelvis. I'm still on my first line treatment of daily tamoxifen, 3 weekly herceptin and 12weekly denosumab. Still working full time as a teacher. Have had a few issues in the last few months with increased joint pain and stiffness so having a few scans done. I definitely think of the cancer as a chronic illness though and this mind set helps me. Hope you're doing ok. X

Mermaid007
Member

Re: Secondary Breast Cancer as a chronic illness? Any positive stories?

Hi Louise,

Hooe you don’t mind me butting in. I’m on Paclitaxel ( taxol)  3 weeks on then 1 week off. Just had my 5th infusion. Hair started to come out after 3rd one. I made sure I had a wig at the ready. It’s been a confidence thing going out but that’s grown. First time I made sure I had a jacket with a hood so I could throw that on if I felt unsure. Have to say it’s been ok so far and wearing it around the house I realise hours have gone by without thinking about it.

Hope that helps

take care

Debs x

Loulou1007
Member

Re: Secondary Breast Cancer as a chronic illness? Any positive stories?

Hi grose94

hope you’re coping and doing well. Could I ask you what chemo you are on? How how is gone, I’m due to start taxol next week and feel I won’t be able to go out due to lack of confidence with hair loss although I also had hair loss 5 years back. I have mets in lung and yesterday had some fluid drained so feeling better.

Thank you for any help louise x

angelam65
Member

Re: Secondary Breast Cancer as a chronic illness? Any positive stories?

Hi there,

Thank you so much for your reply. That’s a great way to move forward and try to think. I will be trying to look at my situation in the same way. It’s people like you that lift my spirits, so thank you. Doing my best to get on with life now. Back at work which helps a lot and makes me feel more normal!  Sending you love and hugs. xx

gem2090
Member

Re: Secondary Breast Cancer as a chronic illness? Any positive stories?

Hello! I live with the mantra that my cancer lives with me, not me living with cancer. I still do everything a normal 30 year old would do and i dont let it take over. When i was first diagnosed i hit rock bottom. Its completely normal to have bad days after the shock of the diagnosis. I have finished my main treatment and had extremely good results and on herceptin long term. So keep ur chin up it will get better ❤️

angelam65
Member

Re: Secondary Breast Cancer as a chronic illness? Any positive stories?

Hi there Karen,

I am in a very similar situation to you. Diagnosed with secondary breast cancer in April 21.

like you ,I looked at my children and grandchildren and just couldn’t believe what I had been told. Still now some days I wake and think I’ve been dreaming until I remember the horrid truth! I had just the same thoughts as you, and thought I was just going to die. My Oncologist said to treat as a chronic illness just as yours did. I find it does help to think that way. Still find myself in a very lonely place sometimes ,no matter how lovely family and friends are, I feel they can’t understand fully how I feel.

On similar medication to you, Letrazole and Abemocyclib. Aching a bit and struggling with weak nails and hair!

Sending love and hugs and lots of positive thoughts. Angela x

catokitty
Member

Re: Secondary Breast Cancer as a chronic illness? Any positive stories?

Hi, I have been living with secondary cancer in my bones for getting on for three years now.  It was a terrible shock and I seemed to be living at the hospital with endless appointments, scans, surgery, radiotherapy and starting drug treatments.  However I have been stable now since October 2019 and am living pretty well normally apart from four weekly hospital appointments and some minor disability  due to the mets causing a fracture in my spine for which I had to have surgery.  It just means I walk with a stick and have to be careful about sitting to support my back but I do get out walking everyday.   I remember at first I did spend a lot of time sitting on the sofa crying, feeling horribly low and depressed.  It took time but I have learned to live with it and the emphasis is very much on living with cancer as a chronic condition rather than thinking about it as a death sentence.  I plan treats for myself as far as possible and always have something in the future to look forward to.  I really don't think about cancer that much now and just get anxious when a scan is in the offing.  I guess we all learn to live with it. One thing that helped me was everyday writing down something I was grateful for in a notebook and that made me realise the many good things I have in my life.  Lots of love to you and everyone going through this.  

karen1965
Member

Re: Secondary Breast Cancer as a chronic illness? Any positive stories?

Hi I to was diagnosed with sbc in may 21 I just thought at first, for the first 3 months that’s it I’m going to die ,I kept looking at my husband an children an grandkids thinking this can’t be ,we have all got a lovely life they need me still I’m 56 an just can’t believe it’s happened again to me . My oncologist said exactly the same look at it as living with a chronic illness ( easier said then done ) .I do forget sometimes as I look fine, but my body is feeling the effects of treatment I’m on plab an letrozole to , my joints are painful but on the whole I can cope I feel like I’m constantly waiting for bad news thou every scan results or blood test I would love to hear of some positive stories Good luck to all you beautiful brave ladies let’s hope we can live long an happy lives 

teresaa71
Member

Re: Secondary Breast Cancer as a chronic illness? Any positive stories?

Hi

I was diagnosed with SBC in June 2021 and was also told to view the condition as a chronic illness. I've recently had a CT scan and my bone mets are stable and the tumour in my mastectomy breast has started to regress. 

Since the scan results, it is feeling more like a chronic illness. 

Life is settling into a routine. I'm coping well with Palbociclib and Letrozole. My oncologist says that I can move to bi-monthly appointments. I'm experiencing longer periods of time without thinking about the cancer. This has taken 6 months to get to feeling this way. 

I'm self employed and still working but at a reduced level. I'm walking a fair distance each day and feeling good.

I hope this helps.

lovethelakes
Member

Re: Secondary Breast Cancer as a chronic illness? Any positive stories?

Hi I was listening to a news item a few months ago on the radio and I heard it said that cancer was being thought of more in terms of a chronic disease nowadays. Hope this helps x

janeh29
Member

Re: Secondary Breast Cancer as a chronic illness? Any positive stories?

i also like to hear any positives. Its the fear of the unknown. Diagnosed last May, chemo finished. I have been on some of the Breast Cancer Now workshops which i do recommend - Look Good Feel Better. Also the zoom groups to talk to others in the same situation. Good luck x

grose_c94
Member

Secondary Breast Cancer as a chronic illness? Any positive stories?

Hello everyone,

 

I am newly diagnosed with secondary breast cancer, HER2 & ER positive with mets in my lungs. 

 

I've had three rounds of chemotherapy so far, with at least another three to go.

 

My oncologist told me recently to not google things (easier said than done) but also to look at this like a chronic illness in the same way that something like diabetes is. I just wondered whether anyone has been told something similar? Just trying to cling onto any good news that I can find. I read about a woman who lived with this for 30 years, I really hope that I (& you) can too.

 

It would be great to speak with someone who is down the line with their treatments and living their life and doing well, this diagnosis feels very isolating especially being so young. Someone who could shed some light when I'm having down days.

 

Sending love to whoever needs it ❤️