I was diagnosed this past June de novo, suspected pulmonary nodules, HER2 +++ I am 47, and to say this devastated me is understatement. It is now October and I still cannot cope. I am part of a Destiny trial with Enhertu and Pertuzumab, which after two scans, everything is shrinking, thought I would feel better mentally, but I don’t.
I took six months off from my career as an Executive Director, I could be off until February.
I cannot wrap my head around the diagnosis, my oncologist is very positive, I do trust him.
I can’t seem to move on to try to have a new normal. I told my husband, mentally I could not go back to work anytime soon, but I am very bored and overwhelmed being at home.
I’m really not looking for advice, maybe on how to cope.
Hi Debbie,
I was also diagnosed in June (the day before my birthday - great!). I felt as though I was living in a dream for a while even though when I found my lump I knew it was cancer. I have nodules in lymph nodes and lungs. I don’t know about you but although everyone was very kind I felt inundated with information, leaflets and organisations that could help. I have read some good advise on this forum though - give yourself more time it is still early days. One woman mentioned that she writes her appointments in her diary and just treats them as one part of her life not her whole life. It is not the first thing I think about each morning when I wake up now but it is the last - hopefully in time that will change. Do the things you love doing and don’t google - everyone is different. There will always be bad days but I wish you all the best - there are some fantastic treatments out there.
Thank you for this. I don’t know if it makes sense but I struggle with the mental part of it more than than physical with treatment.
I miss how I was before when I wouid just stress about my job. I look at people in a crowd and I envy them that they aren’t going through this.
How do you cope? What treatment are you on?
Looking back I too felt like that and now I’m okay but it took a while. I can see that I was grieving for my life and wanted it back to what it was. Only close friends and family knew. I was ashamed of being the “sick one” it was never who I was. I felt guilty for getting cancer so I was dealing with lots of emotions. And very much in my head and so worried all the time. Now I just try to live in the moment more and not get caught up with the what ifs of the future and the past is the past. I can’t change that. Worrying doesn’t help. I have to remind myself and have little talks to my self about this all the time. I’ve found meditation and spiritual interests are soothing for me.
I am on Letrozole and Ribociclib and so far apart from losing some hair have been very lucky with lack of side effects. I absolutely get that the mental side can be the most difficult - I often think back to when I used to moan about silly things and now think how lucky I was! If I had a secret way of dealing with it all I would spread the word, unfortunately it’s really basic; I like some routine to my day so walk each morning, try and eat well (cooking can be relaxing) do something I enjoy daily and try to get enough rest. I know there are counselling services available and groups set up online and in person if you feel like talking to other women in a similar position would help. I actually think we go through a grieving process for the person we were before the diagnosis and we all know that takes time. That said apart from this horrible disease you have the same qualities you had before cancer (good and bad like the rest of us :). It sounds as though you have a great job - see how you feel in February but be kind to yourself x.
I’m not sure if you meant to say you are NOT looking for advice or if it was a typo. Anyway, here goes. You are a 47 year old lady with what sounds like an important and responsible job. I don’t know your other circumstances but presume you have either family or friends. So what, you say?
Well, here’s the thing. You have a nasty disease but this is only a tiny part of the person you are. You can cope - because you have to. There is no choice. I had a grim time being diagnosed whilst the world was in lockdown and the NHS unconcerned with anything except Covid. I had to fight every step of the way to get treatment which would save my life but, looking back, perhaps having to be so strong helped me. Yes, I am bitter and twisted about our appalling health service, but I have come through because I never let it overwhelm me. As another poster said, put one foot infront of the other, establish a routine and just plod through the treatment step by step. I found that nothing was ever as bad as the expectation and by focusing on NOT being cancer focused, I was able to get through.
Personally I would go back to work - perhaps part-time - as this would keep you stimulated and help your general well-being. Unless of course you are physically too debilitate which is another ballgame. Do NOT think about cancer all day and every day. Stuff happens and some of us get sick. Its how we cope that makes us who we are. I was absolutely determined not to be a cancer bore and although it was nice that people cared, I only shared treatment steps with friends in a timetable sort of way. They planned in nice treats to coincide with the chemo cycles which helped but I really only had a complete meltdown on one day and that was soon over.
The chances are excellent that you will come through this physically. But please, get out of the house and combat the boredom. Boredom spawns hours of internalising and consulting Dr. Google. Help yourself, you will get through this.
Hi,
I agree with teddy271. I was devastated that my cancer had come back and i’d gone from Stage 1 you will be fine to Stage 4!
I’m a project manager former business analyst do i knew i’d do lots of “research” unless i continued to work. I’m also single so in a way i also needed to work to keep paying the bills.
Anyway roll on 1 year and i’m doing well on treatment Letrozole and Ribociclib, back at the gym but doing more yoga as it helps calm my mind, fostering a dog and managing a multi million dollar project.
Cancer gives you a different perspective and its helped me not get so stressed about the small stuff, even though i fo at times wish thats all i had to worry about.
Being sad, angry etc is normal as you adjust. If you like your job ask about a phased return, or the flexibility to work from home more. It will bring back some of your pre-cancer self and give you something to focus on.
We are all different and it may not be what you want to do, only you will know what will help you.
New drugs are being developed globally to fight this disease. Keep that in mind.
I’m totally looking for advice. I have a very supportive husband, he has seen me at my worst the past few months.
Like others have said, I grieve for my old life, almost pointless stressors.
I think about going back to work but I’m afraid I can’t give 100% right now.
I am so sorry you’re going through this.
I cannot really give any advice but I can say that I have seen a good few long-term survivors on that treatment from accounts I follow social media- they are about 7 years in on first line. If you wanted to have a look at their stories- there is limitlessem and it’s Kellycrump and baldbooblessandbeautiful on Instagram. I don’t know if these accounts will help but they may give you some positivity about treatment and how well it can work.
X
Hello there Debbie
I read your post yesterday and almost didn’t reply because unlike you I don’t have secondary BC . However something in your story resonated with me - about 5 months after diagnosis I found myself saying to my GP "I’m not ready to go back to work I’m sorry " . You are obviously a very capable strong person to be doing the job you do - I’m a Nurse and there was no way I could look after other people when I was such a mess myself . Please don’t feel bad that you don’t feel up to doing the things you normally do / behaving like the person you were before you were diagnosed .
What you are experiencing / feeling now is perfectly normal . When you are stuck in the BC whirlwind of tests and appointments and treatments and waiting then more tests and waiting and appointments and so on it’s exhausting and you don’t look much beyond the next stage or think too far ahead. I know that your treatment is ongoing but it sounds as if the immediate physical threat has passed for now and things should be settling into a slightly more stable routine. This is your time to process , get whatever help you can to do this - there’s some excellent advice in the posts above . Work out what you want and what is possible and don’t start comparing your journey to someone else’s - it isn’t helpful. Someone in another thread said that she doesn’t do “shoulds” anymore and I think that’s great advice.
With love
Joanne. X
I doubt very much that your work colleagues would expect 100% and anyway, how do you know what you are capable of till you try? Please don’t let cancer define you, it is just a small part of your life and an even smaller part of your personality. It is horrid that you are suffering from such a hideous disease BUT you still have choices and the biggest one is deciding to live the best life you can within the limitations of your treatment. Sitting at home being miserable will do you no good at all and I can tell you that even the closest friends, the most supportive husbands and the most loving family, eventually get fed up. Being the partner/friend/mother of a loved one with cancer is incredibly debilitating and I always had that in my mind. By all means have ‘lost’ days when you have a good wallow, but drifting into cancer victim mode as a lifestyle choice is a bad idea. Try my tip for bad days: Lie on couch cuddling dog whilst watching Say Yes to the Dress and eating bags of Haribos. If nothing else the sweets will make you feel so sick you’ll have to move about.
Best to you
Thank you for the responses and advice, I have asked my family dr for referrals to counselling. To me that is a start. Hopefully it can help me navigate getting back to work sooner and coping.
Easier said than done maybe.
I guess I should feel fortunate that I am tolerating my treatment with barely any side effects so I need to work on the emotional part now.
Hi Debbie
I am so sorry to hear of your diagnosis. I had a mastectomy on September 1,2022. When I was diagnosed, I was an emotional wreck; the denial, disbelief, anxiety, fear, my whole world turned upside down. How could this happen to me, I asked myself over and over. I always take good care of myself: I don’t drink; I don’t smoke; I don’t do drugs; I exercise and stay physically active; I eat healthy avoiding meats and processed foods and sweets. So when cancer hits, I was in total denial and shocked. like you I found it more difficult to cope mentally. I took 9 months off work because I couldn’t focus or concentrate. Fast forward, I am still dealing with emotional scars; I have lain awake at night my mind buzzing with the memory of the journey; sigh…… fast forward to one year later, I wouldn’t say I have recovered emotionally and mentally but it does get a bit easier. Now I have to deal with the after effects of my surgery. I had 28 lymph nodes removed and my operated arm feels tight and numb all the time. As a result I have to go for physiotherapy treatment regularly which is one constant reminder of my cancer diagnosis.
Hi Debbie,
It’s me again Siggi. It’s totally fine and normal not being able to cope emotionally. Just remember that it’s okay to not feel okay. We have to be kind to ourselves. I am back to work full time now but I think it is important to take as long as you need. Sending you strength.
Dear Debbie
I am so sorry you are going through this Sister.
I was diagnosed last September at 49. Stage 4 de nova. Pr and er positive her 2 negative. I had mets to my bones at first but unfortunately it progressed to my liver and left lung. I am on my 3rd line of treatment. Two clinical trials. I started on Riboclicib and Lextrozle but got progression, then i joined the Capture trial but again progression. So now i am on the INVA1021 trial. I have the pik3ca mutation so i finally got on a treatment for that, early days its very exhausting clinical trials, but well worth it. I read about Destiny and it sounds very promising and what you have said its shrinking the tumours which is great news. I hear how you are feeling, its the unknowns. But then i think well no one really knows healthy or not whats going to happen. I take one day at a time and treat it as a chronic illness and i have to take meds everyday. I have now after a year decided to start therapy, i think its good to talk to someone else that is not directly involved in my journey. It sounds like you have a good medical team, so please tell them how you are feeling. I am from the UK but live in Australia. I had no symptoms i was just going for my yearly mammogram as it runs in my family, i got a ultrasound and mammogram every year. This time they found something suspicious. My lymph were up as i had that horrible injection. Within 3 weeks after biopsies i am told stage 4 and it hit me like a ton of bricks. My children cried so much, it was beyond words really. But a year in and a couple of setbacks i feel stronger and my children make me fight on. I think its good to take time off from work, its hard, but do things for you. Even if its curling up with a book or watching a movie
Exercise when you feel up to it. I actually cook more even if i only nibble on food, i create dishes, before and i know this sounds awful cooking was such a chore for me but now i love it. Infact my whole life has changed for the better in away, i embrace things more and i dont rush. Not that i can now 
but i dont have to. You sound like you have a very supportive husband, its just adjusting to life being a little different. I let my medical team deal with what they have to do, they have my goals to see my children finish school and then i will set new ones in 3 years. I deal with what i can control. You are in my thoughts and prayers, here if you need to chat.
Take care xx🩷
A cancer diagnosis is a lot to take in. But we are so lucky to be living in a time where we do have options- we do have treatments that work! We do have medicines to help with side effects and there are new meds on the horizon. Ladies if this were 10-15 years ago, we’d be on hospice or gone! Thankfully our sisters before us endured treatments and trials so we may have a chance at living longer! Cancer is not the end, it’s a bump in the road! You had mentioned you were an Executive- that tells me you’re tough, hardworking and organized. You can use your skills and diagnosis as a platform for others! Just by you fighting you show strength. We may not be 100% of who we once were, but you can be so much more! I am thankful that you are alive and in treatment! Use your blessings - and you will find peace and happiness. I can’t change my diagnosis, but I can change how I look at it and how I react. It’s not an easy journey , but I believe in you!
Thank you for this
How did you transition back to work? I’m pretty sure I will have to start with 2-3 days a week.
I feel I have PTSD honestly from everything starting in June.
That is when I start to feel anxious and panic.
Much will depend on Company you work for and their policies. Mine were incredibly flexible and left it to me and medical team to give direction.
So i started back on half days. The hours i wanted and increased as i felt able. Any off days were treated like a normal sick day.
Regular call with HR to check i was ok etc. Counselling was also available
Hi Deb
I had a graduated return work schedule. I started with 4 hours a week the first week of return; then increased to 5 hours the week after, 6 hours the week after and then full time. This schedule helped immensely after the long absence. I lost interest in all my hobbies. I stopped watching movies or Television; I stopped playing my guitar because I could not focus. One thing I can say for sure is that cancer has changed my life. Hugs to you