Hi all, I went for an MRI in April for back and numb painful leg which after so many scans, biopsies, etc I have finally been diagnosed (after 10 years free) with secondary breast cancer metasised to pelvis and spine so far, I had another full bone scan Monday and the results will be there when I meet with the oncologist on 8th Sept for them to give me the treatment plan. That will be 5 months since it was found, so much waiting!!! anyway, I am HER2 Negative so at least no chemo this time, I have been looking at treatment etc and a bit worried I won’t be able to continue working with the side effects, is anyone continuing to work with medication? I live on my own so I need to work. And I am so sorry that you are all having to go through this XX
Hi MB1965
I was diagnosed with secondary breast cancer straight from primary end of May 21. I have secondary in bones. The treatment I am on is letrozole and Palbociclib and I work 32 hours a week office based. I am given time off for appointments. Also I have so far only had minor side effects like tiredness, a bit achey and the odd hot flush. I am her negative as well.
Hi
I’m sorry you’ve found yourself in this situation. No one can tell you exactly what side effects you’ll have (if any) and how they’ll affect you, but I get the impression a lot of people experience overwhelming fatigue. Maybe you could make a start by contacting the MacMillan helpline and choosing the Work option. They are very knowledgeable and can help you plan effectively (as well as making sure you don’t miss out on any entitlements you may have as a disabled employee under the Equalities Act). That may ease your worries about not working - though you may well feel able to take on a part-time role, work flexible hours, work from home, even work full time. Like I said, there’s nothing to say you will be overwhelmed by side effects, especially if there’s no chemo!
Wishing you all the best,
Jan x
My mum was diagnosed a year ago with extensive bone mets. HER2 negative, Estrogen positive. She took early retirement as she is 59 and worked in a nursery with 4 year olds!!! Her sacrum actually fractured on first diagnosis.
However, my mum is full of beans! She can honestly not sit still … she came round to my house yesterday to do some “light” gardening (she promised she wouldn’t do much)… Well that was a fib!! She over hauled my garden , then she went home and started painting her internal doors!! Then she cooked dinner for my brother and stepdad! We tell her to slow down, but she won’t. She’s so stubborn! She was running off rocket fuel yesterday. Every day is different with regards to her stiffness, but she says it’s only minor and doesn’t take any pain killers.
As previously stated though, everyone reacts differently to different medications, so see how you get on after your first or second cycle.
Wishing you all the best! XXX
Hi MB1965
I think we are the same age. I was diagnosed with secondaries along with my primary diagnosis. After chemo I am now on letrozole and perjeta injection every 3 weeks. I am ER and HER positive. I returned to work when my chemo finished and work full time but flex my hours so I have one day off a fortnight. I get time off for treatment and appointments but also to manage my disability. I have just booked in time off after each treatment to help me manage the fatigue I feel then. The rest of the time I am able to manage my office job. I have been back at work for 18 months now.
I have learnt to recognise the signs of when I need to take it easy and allow myself to do that and not think I should do this today …things can wait. That investment in yourself is so important.
Do get some advice before you talk to your employer so you are clear about your rights and be prepared to adjust your plans as you go along as there will be times when you will be able to do so much and other times when you need to rest.
Do also look at your early retirement options so you understand what is available for you. It is true that the more I formed you are the better.
Sending you hugs
Hi, I was diagnosed in June, bone mets in vertebrae, sacrum and pelvis. I have just finished cycle 1 of palbociclib, faslodex and denosumab. Don’t feel too bad, bit tired occasionally, odd times bit nauseous but take an anti sickness tablet and it goes. Have been bit achy and bit itchy, but put this down to dry skin and lack of oestrogen as I am also on zoladex. I have managed to work 35 hours a week, office based. Like some of the others, I too have been able to freely go to appointments and there are a lot in the beginning as they like to check you regularly. I like you have to work, just pace yourself the best you can. My work have given me a laptop so that is useful if I don’t feel up to driving in and/or too many bugs around at work. Once you have your plan in place you will feel better and focused.
Claire xx
Hi, thought I would give an update, had my oncology appointment Wednesday, she was really stressed and somewhat rude, none of the breast care nurses were there due to annual leave and not being their work day. I felt like I spent my whole time apologising as everything I asked was a no or a very stressy answer. I had to go in on my own and asked if I could record it as I was on my own, that was a flat no. Anyway I am now on Letrozole and they need to do another CT scan as the last one was 4 months ago and because it has been so long to diagnoses they need to look at it again before I start the palbo. so a bit more waiting. I am hoping it was just a bad day with her because if it happens again I will ask to see someone else. Fingers crossed the tablets don’t give me too many problems. Hope everyone is ok xxx