It keeps getting worse, I'm really struggling. (HER2+)

Diagnosed with breast cancer Recently diagnosed with breast cancer
1

How does everyone get to sound so positive?

In the space of 2.5 months I have gone from nothing - then a mammogram call back - then biopsies including from a lymph node  - then diagnosed DCIS from biopsies and lymph mode clear, but no tumours visible  - then full left mastectomy with lymph node taken - and now (yesterday) histology results appear to be full blown her2+ cancer cells in lymph node taken, so awaiting CT scan not even sure what for, I guess to see if I am riddled with the stuff.

I am no cancer warrior, because I am in bits. I am 59 in August, and it appears I can write off the next 12 months of my life to horrible treatments that I don’t want to have. (Having just written off 12 months to covid lockdown - which incidentally meant my mammogram was 5 months late!!! - so I can’t help think this would not be so devastating had it been on time)

I have so much I want to do this summer, including a one off promised holiday taking my daughter and grandkids away which was cancelled last year to covid.

I just want to go to my bedroom and not surface for 12 months. I am scared of my next visit for (CT) results because if it follows current pattern it will be more very bad  news.

The only people I have ever met with breast cancer, were brave, but they endured horrible treatment only for it to come back and take them within a couple of years of first diagnosis.

As you can see, I am feeling completely hopeless, and my immediate thought process is do I want 12 months of hellish treatment, (by which time I will be clocking on for 60) only for it to come back a few months later, or do I just sack it all and enjoy what time I have left. That is of course a decision for when I find out if I am riddled with cancer.

Fortunately my kids are grown up, so nobody ‘needs’ me as such.

Sorry for such a depressing post, am I the only cancer ‘wimp’ not warrior out there. Where do you find hope, is there anyone at all having had  a similar diagnosis - treatments mentioned to me, but not confirmed were Chemo, Radiotherapy and Herceptin, but to be decided after my CT scan and results.

I salute you brave ladies out there.

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I can sympathise with how you are feeling ! Its definitely OK not to be a cancer warrior !! 

I first had breast cancer 20 years ago left lumpectomy and full node clearance, with chemo for 8 months just in case there were any stray cells radiotherapy for same reason. Fast forward 20 years to August 2020

Had left mastectomy and removal of a grade two cancerous area on right breast, currently recovering from removal of a lung nodule for which I am awaiting the result! 

It is very easy to let all your thoughts run away with you and the thought of months of ill health I am currently going through a decision making process too. I am awaiting the result of the lung nodule next week and will then have to make treatment plan decisions,waiting for results is the worst time. all I can say is that you may be offered radiotherapy or chemo if there is just lymph node involvement they are probably doing the ct scan to check the rest of your body to make sure there hasn’t been a spread elsewhere.

Obviously no one can pre empt what the tests are going to show but all I can say it is YOUR decision not your treatment team or your family  you should never feel that you are pressured in to any treatment it is absolutely OK to say you don’t want treatment !!  But if it simply a case of a course of radiotherapy for instance then it maybe something you want to consider, also treatment can very often be fitted in around holidays etc, do what is right for you!! Hope this helps and good luck with the scan results 

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Hi Pam

First I’m so sorry this is happening to you. I am completely behind you with regard to feeling anything but a cancer warrior. Why the hell should we be. Every time I hear Stand Up To Cancer, I mutter “or flop like a jellyfish.”

I’m guilty of being relentlessly positive but I wasn’t at the time. I was a wreck. It wasn’t the cancer that terrified me but the thought of the treatments. And they wiped me out. But the fact is, a lot of women are not wiped out. They experience a few days, maybe a week in each cycle where they feel like sh** but recover and continue with their daily lives, even working. I envy these women but I don’t remonstrate with myself for being a wimp. It’s how the dice tumble. You won’t know till you try it.

Please don’t write off your life. But also, please don’t assume the horror stories you read in the media are necessarily applicable to you. People come to these forums because they need comfort and maybe help. It certainly helps to know you’re not alone as you navigate Cancerworld. But there are millions of women who have never needed to come on here, aren’t they? My mum had breast cancer twice (in her 40s and 60s). The first time, she only told me and my dad; my brother who was living with them at the time didn’t even know she had cancer, she just said she’d had a bit of surgery, Second time round, she needed help getting to radiotherapy but she was never ill. It is so unfair when I think that I was like a zombie most of the time!

The fact is, you have cancer and there’s nothing you can change about that. You haven’t got your full test results back yet, not do you have a treatment plan but, yes, not having treatment is an option. But my jaw dropped as I read you writing yourself off at 60. You may well have another 30+ years left, a third of your life. I think fear and desperation drive these thoughts. One thing I learned is that your emotional health is a huge factor in what’s to come so why not start working on that while you wait. People do all sorts - running, baking, meditation, yoga, wild swimming… whatever makes you feel in touch with good and positive emotions. Me, I turned to YouTube videos that got me sleeping, took the edge off my anxiety and eventually established a healthier pattern of mental health. There are online resources specifically for breast cancer too - Maggie’s, The Haven (till the end of June, sadly), I believe there are resources here and I can vouch for the nurses telephone service - so completely reassuring. In fact, I’d say start by ringing them, offload your frustrations to a completely understanding and sympathetic expert. It’s worth it.

I wish you all the best and hope you can look beyond the treatment phase, overcome those frustrations and join the positive group, none of whose were positive at your stage!!

Take care,

Jan x

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Hey I’m 54 a Foster parent to 13 and 15yr old girls long term. A daughter and 2 grandkids 13 and 16. Oct my nipple sunk in by Feb had right mastectomy  and 10 lymph nodes removed. Told had rare cancer lobular  and in my spine. Prob got 3 yr. I’ve read lots people not ill with chemo  etc and got to just hope trails. Every day I struggle with thoughts but I try to put aside. Do u live alone

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Hi Pam

I felt and can still feel exactly the same as you. My diagnosis caught me off guard as I went through several months of operations and meetings until it was diagnosed and I too went from DCIS to a mastectomy and am now half way through radiotherapy.

It is without doubt the scariest time and you are probably getting lots of information and lots of things being set up for you and for my part I watched it all almost from the sidelines not believing my life was going in this direction. I was also most definitely not positive and couldn’t see how that was manageable. I am changing that slowly and bad days still creep in but it’s perfectly understandable to feel like that. 

I had some lovely replies from this forum and firstly I would say take a big breath and be kind to yourself. You’ve had a huge shock. 
I took questions written down to the appointments so I could try and get the answers to the aspects that were really worrying my mind. 
Family and friends will want to support and I talked (and cried) a lot to them. Don’t keep it all in. It’s also ok to be really hacked off at the diagnosis and what it’s doing to your day to day and longer term plans! But they’re not lost, just paused.

I hope your next meeting and scan go really well and the news is better than you’re thinking (I had lots of very negative scenarios which weren’t the actual case)

I know it’s a rubbish time but you’re already making steps down the road and people in this forum are here for you.

As the mist clears a bit I hope you can access all the various support available to you which can help you feel supported.

Sending a big virtual hug and here for you. 
Take care x

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Good luck and hugs to you. I am HER 2 positive too. It came as a shock. I have also had a mastectomy. I am told that I won’t need further treatment unless it comes back as I am stage 2. I know that so far I am lucky and hope my luck lasts, but if it does come back I would have further treatment to hopefully increase my chances of seeing the Grandchildren grow up. Some people get very good results with treatment. Try not to panic, discuss it with your Consultant and breast care nurse, you can get help, advice and counselling from your treatment centre, Ring the Nurses on the Breast Cancer Now Help line, I did, I found talking to them really helpful and they certainly helped ease my panic by explaining everything to me. Coffee mornings/afternoons will be starting up again and you will be able to talk to other people with the same diagnosis. Lockdown has prevented the normal safety valve of being able to talk to other people about it. A problem shared is a problem halved, you will be surprised the number of people who have recovered and lived a full life after a breast cancer diagnosis. Don’t give up.

Best wishes to you

 Pam