i am hoping you lovely ladies could share your thoughts on the dilemma of to work or not to work following a mbc diagnosis? I was Dx Stage IV at the end of September this year. The Se of Afinitor/exemestane/Xgeva were awful and I have basically been on sick leave for the past three weeks bar a few days. I stopped Afinitor and am hoping to switch to Letrozole. I am now wondering whether I will ever be fully OK to return to work full time or indeed if I want to? Are the side effects of most treatment plans difficult to juggle with work? I'm not sure I want to work part time....I think I would feel that I was not truly productive. I am a personnel manager. I am fortunate to have insurance with my superannuation which I think would financially allow me to stop work, but if I do, will I find myself bored and too focussed on this disease? Then again, if my life span is limited, do I want to waste the time left to me working? Perhaps you have faced similar questions and perhaps you have been on the mbc journey longer than me? Is so, I would love to hear from you, thank you, cheers Judy

Hi there @maggie001, I too have been faced with this dilemma and it still rears it's ugly head every now and then. Your regime sounds similar to mine Everolimus (Afinitor)/Aromasin (exemestane)/XGeva. You stated that you received your diagnosis at the end of September - so, barely 5 weeks ago. With the taking of any medications, it sometimes takes a while for our system to adjust. However, you have had a huge shock with your diagnosis combined with the juggling of taking not 1 but 3 new medications. I am not surprised at all that you have felt so awful. When I was diagnosed with mbc in September last year, I commenced aromasin first. Under instructions from my oncologist, I took 1 or 2 cycles of this before starting the injection of Xgeva and then 2 months later the everolimus (Afinitor). This was 2 fold - in the case of any reaction, it narrows down the cocktail of meds that it might be that has caused the reaction plus to reduce the onslaught on your body physically. Each of these 3 meds, taken alone, are quite powerful and have a whole range of potential side effects (as the enclosed leaflet states !) I have been pretty fortunate in that I have not had a great deal of nausea however as I started radiotherapy around the same time it is difficult to state whether some of the nausea I had was due to the radiotherapy (along with many other issues) or new meds. After finishing radiotherapy in February, I had a 3 week stay in hospital. Lung infection (thought the cancer may have spread) and I was anaemic (7 x blood transfusions). I was away from work for around 8 weeks. One year from diagnosis, I take Afinitor/exemestane on a daily basis and Xgeva injections once every 3 months now due to a huge drop in calcium levels after only 3 x monthly injections. I have had the most wonderful support from my employer. We are a financial planning firm who understand when people are ill with a chronic disease or a diagnosis of terminal illness. We many long term clients who we have assisted with their claims. Generally I work 4 or 5 days per week because it keeps me grounded and sane. I do not want this disease to define me and whilst I am lucky enough to be well enough to work, it keeps my mind active and not so focussed on this beast, cancer. Don't ever think that being part time you won't "be productive". As you are a personnel manager, I am certain you have all the qualities of somebody who is an asset to your employer. Judy, my story is not dis-similar to yours but being 12 months along, I have worked out a balance. It has taken a while. There are some days where I have only been able to work 2 or 3 days per week. I hope you find the right balance for you. Very best wishes and light to you, Judy. Kind regardsSheryl

Hi Judy,I received my 'upgrade' in November 2015. I had 6 cycles of AC Chemo, worked full time right thru, Chemo in the morning work in the arvo. I was however, very lucky to tolerate it so well, I know other dont.I am now on daily arimidex & monthly Xgeva injections, my calcium levels are good on this possibly because I take Calcium/Vitamin D tablets on the Oncologists advise every day. My ovaries were removed in June but up until then I was also on monthly injections/implants of Xoladex to chemically shut them down.I remain active, I was & remain a runner, this I also kept up thru Chemo.I am currently training for City2Sea on 20/11. I couple this with healthy, organic where I can, eating.I still work full time, my employer has been wonderful & extremely supportive & remains to be so. I work for my own sanity, it occupies my mind so Im not sat at home with little else to think about but my diagnosis. It works for me but we are each different.Every one of us is different & tolerate treatments differently, you have to go with what you find works for you. I do have the odd Sunday whereby all I do is lay around watching television & napping.There is no right or wrong, you have to do what works for you, sometimes it just takes a while to work out what works.Cate

Hi Judy, I have not worked for 15 years after my first diagnosis of early breast cancer . At that time my employer gave me 12 months leave to recover and make up my mind if I wanted to return to work. I was working as a trained nurse and the job was stressful so I enjoyed my leave and didnt return. Soon after my grand children were born and I enjoyed being there looking after them whenever I could. Now I have metastatic B C which I have been living with for over 4 years . My husband is rretired and we make the most of every day. Visiting friends going out for lunch or just out for coffee. We live on the coast so walks along the beach are my favourite. I love craft work and keep productive.I know everyones interest is different but for me it is good to take time out for yourself. As they say stop and smell the flowers as long as you don't get hayfever. Love Wendy

As everyone says, there is no right or wrong, it's what works best for you. Like Cate, I worked through treatment, found it really beneficial but then again I was able to do so (no nausea, no fatigue). I did have other side effects but they did not stop me working. Staff and Director were all very supportive.I cut back one day after about a year, not because of cancer treatment but because cancer forced me to accept I wasn't getting any younger (I was 68) and my work/life balance was terrible. I do a busy 4 day week, find that works really well for me, and have more time for other pursuits ( have finally joined a local choir, and the gym). Good luck with whatever you decide.

Hello JudyI was diagnosed with MBC after emergency surgery to my C3/C4 in August 2015. I then had a lumpectomy with nodes removed and then radiation to my cervical spine. At the time my oncologist gave me of until the end of March 2016. I thought wow - that is a long time. I was then diagnosed with a melanoma in January and that was relatively easy to remove compared to what I had been through. It is now the start of November 2016 and I am still on sick leave. My oncology team have no problems giving me leave. I had accumulated over 300 plus days of paid sick leave which will run out in February/March 2017. I had worked for over 35 years full time in a government position. I am then fortunate enough to have an insurance plan attached to my superannuation which will pay be a temporary pension for at least 12 months. I then have over 180 long service leave days left if I want to use them. As I am 56 I was intending to retire at 60. This disease has certainly turned my world upside down. I try and keep busy all week which is pretty hard now that I am feeling reasonably well. I go to the pool, do lunch, go shopping, walk my puppy dog or go the movies. I am able to go and do some part time work when I run out of sick leave. I am so looking forward to this. I have too much time to think about me, me, me. I have applied for a couple of volunteering jobs but to no avail.I say take a little time out from work. I am on letrozole and xvega - the side effects of letrozole are pretty average. Working part time is a great option. Please do not think you would not be productive. I think it is a perception if you are now working you are "lazy". I know people think that about me because I look well on the outside. It's just crappy full stop Judy but please have some time to yourself to come to terms with everything that is happening to you. Kind Regards and Love to AllSandraxxxxx

To work or not to work? | BCNA Online Network

maggie001
Member
9 years ago

maggie001 said:

Hi Melinda and Miss M,
Mekibda - you do sound like a wonderfully strong woman with a very positive attitude. I thonk one of the hardest things to learn to do is to put yourself first and give yourself time to just be, to live life in the now and do the things you want to do with people you want to be with. I wish I was better at this and totally agree with all you said. I think my job is physically less taxing than yours working with autistic children or Miss M's as Director of a childcare centre. I am largely a desk jockey.
It is a very individual decision and depends hugely on how well you feel with treatment and the cancer. I'm lucky at the moment I fell well.
Thanks for sharing your thoughts and I hope you both can feel well enough and strong enough to return to work when you feel able
Hugs -
Judy
maggie001
Member
9 years ago
Hi Melinda and Miss M,
Mekibda - you do sound like a wonderfully strong woman with a very positive attitude. I thonk one of the hardest things to learn to do is to put yourself first and give yourself time to just be, to live life in the now and do the things you want to do with people you want to be with. I wish I was better at this and totally agree with all you said. I think my job is physically less taxing than yours working with autistic children or Miss M's as Director of a childcare centre. I am largely a desk jockey
Miss_M
Member
9 years ago
You sound like a incredible strong lady, I to am single so not working I know will be really tough, but I know it will all work out. To have no support during this time would be so hard, I'm luck I have a large support group within my grown children , boyfriend and my work community as I'm a director of a Childcare centre and the support from my employer and families is unbelievable.
i hope your recovery lets you get back to work as soon as your healthy enough to, because I know working with children help me to feel motivated and better about myself.
best wishes.
melclarity
Member
9 years ago
Maggie, whilst I dont have MBC, I've had BC twice in 5yrs. it is such an individual journey in terms of work, only you can decide if its right for you or not. I had aspirations and was very stubborn at the onset of treatment last August...seems the Universe had other ideas. I was extremely ill through Chemo 4.5 months and couldnt work for 3 months of it. Im 11 months post Chemo and still only able to work 3 days a week. I was upset at the time as I work with Autistic Children and I wanted to work. What I realised was it worked out exactly as it was meant to....I had to learn to STOP...Ive worked hard all my life and put others before me...what I learnt to do now is I PUT ME ABOVE EVERYONE. Work comes second now to my health and what I want to do in terms of my continued recovery. A huge life lesson for me but Im finally honoring myself. No job is worth running yourself into the ground for...and yes the flipside is for alot of people its a great distraction and they are well and enjoy it. ITs incredibly personal and depends on what your journey is and feels like for you...I learnt to let go of all expectation on how I think things should be and now I just live and life is much more enjoyable. Its been a tough 5yrs doing this twice and im a single parent with no support...but I did it, and will continue to recover and hopefully get back to full time in another year. Hugs Melinda xo
Miss_M
Member
9 years ago
To be able to keep working through my treatment has been one of my biggest questions, I work full time in a very busy position, an in my brain I'm telling myself nothing will change I'll have treatment either first in morning or last thing in day and work my way around appointments, I know time will tell and it a question that will be answered after the first of my treatment on Tuesday. I'm hoping my positive, stubborn attitude will prove me right.
thank you to everyone for their insights into this issues.
maggie001
Member
9 years ago
Hi Amanda, thanks for your advice. I am on my second week back at work now and so grateful for the support from my employer! It is good to have something to take my mind off all things cancer and have a few hours in this bubble where it is as though I had never got the mbc DX! I hope the clinical trial is going well and you are getting good results ? Apart from the Zolodex we are on very similar drug regimes. Cheers Judy
makebelievegirl
Member
9 years ago
Hi Judy, I've been on a clinical trial for most of this year - with trial medication/placebo, Letrozole / Zoladex / Xgeva. I swapped jobs - from 3/4 days part time (newish job and workload was 5 days worth) to returning to a retail job for 2 half days. I find that I have some memory fog and am very tired on my work days. If you have a supportive work environment, I would just move down one day at a time... give your body a chance to see how it feels about the drugs. I rushed to swap jobs after my diagnosis went from nothing to mbc in a few weeks. If you have a workplace that are willing to give you time to see what will work for you... go for it!! The emotional support alone will be worth holding on to! All the best. Amanda
maggie001
Member
9 years ago
Thanks Anne, I'm going to investigate the benefits of acupuncture. A friend at work said she knew of a good Chinese doctor who does this. I figure it can't hurt and will hopefully do some good!
cheers Judy
Anne94
Member
9 years ago
Hi maggie, I forgot to add that I'm having accupuncture as well. It's supposed to help with the menopause symptoms. And possibly helps my mood in general. My next zoladex injection is on the 22nd.
Hope you have a great weekend
anne
maggie001
Member
9 years ago
Hi Anne, so good to hear from you. We seem to be on the same time line and trajectory! I think the few weeks I was off work after the diagnosis were as much about getting my head around it as dealing with the side effects of the Afinitor. I went back to work this week and whilst I came home Wednesday afternoon feeling dizzy, sick and tired, the rest of the week has gone well and I'm enjoying having other things to think about.
I was interested to hear you say that the zoladex injection makes you feel like you have the flu. I'm not sure how Xgeva affects me as I was so sick with Afinitor side effects I wouldn't have known if any of it was the Xgeva. But I have my next Xgeva injection next Tuesday, so we will see.
I hope you stay well Anne and please keep me updated!
cheers Judy