New and overwhelmed

Hello everyone,

I was diagnosed with breast cancer in June and have been on a proper rollercoaster of good news/bad news ever since. So, having floated around reading all the posts on here and seeing how lovely everyone is I thought it’s about time to join in.

My story so far…

  1. Mid June I discovered the dreaded lump and after ultrasound and biopsy was assured it was small (18mm), early (Grade 1) and no sign of lymph nodes involved. Easily treatable. Phew!

  2. Two weeks later lumpectomy and SNB which revealed the lump was a bit bigger (24mm) Grade 2 and two lymph nodes affected. Oh. I was given the option of radiotherapy or a lymph node clearance and when my surgeon appeared to be pushing me to the clearance I decided on that.

  3. The lump was sent off for the Oncotype DX test and came back with a very low score of 14 and I was told chemo now unlikely. Yay!

  4. ANC op went ahead 2 weeks ago and this week was told 29 lymph nodes were removed and 4 more positive. Apparently after much discussion at the MDT meeting it was decided to override the Oncotype score and discuss chemo after all. Sh*t!

I now have a CT scan booked for next week followed by my first online appt with the oncologist.

I feel like I’ve been on the world’s most evil rollercoaster of good news/bad news/good news/bad news. And now feeling utterly overwhelmed and terrified by what’s coming my way next. Terrified that in this short space of time I’ll be hurtling from the ‘early and curative’ stage to being told I’m Stage 4 and it’s game over.

Not to mention the fears over chemo treatment, work (self employed breadwinner), lymphoedema…oh, and dying.

I’m usually someone who copes well in a crisis and tackle things with a (sometimes dark) sense of humour but I’m so overwhelmed trying to navigate this I’m feeling lost. Also dealing with seromas after my op - one drained this week but has popped up again and have had conflicting advice on how to deal with that too.

I’m wondering if anyone has had any similar experiences (particularly with the dismissal of the low Oncotype score- is it meaningful at all now?) Anything to help me get some hope (and my mojo) back.

Love and best wishes to all and looking forward to meeting you.

Deep Joyx

Hi Deep Joy

Welcome to the forum although we would all rather not be here! I have had some similarities with your experience.

Went to the GP in May, had the screening done in June and it was thought I had a 2cm lump, cancer suspected; the biopsy results 2 weeks later showed a grade 1 cancer, 3cm lump. I had the lumpectomy and SNB in July. The plan was to then have radiotherapy & tamoxifen. There was no lymph node involvement nor lymphovascular invasion but the pathology results showed a grade 2 cancer, so they sent a sample off for Oncotype DX testing. For three weeks I was convinced I might need chemo after all. 

I got my score back this week; 13 so was told that there would be no benefit to chemo and the likelihood of recurrence or distant recurrence is low. For now I am breathing a sigh of relief (or trying to) before I start on the tamoxifen which I have now been prescribed to run alongside radiotherapy.

Unfortunately I think it is the nature of the cancer experience to have a yo-yo of good news/bad news as they keep discovering more about your cancer the more procedures are done and the more tests are done. I am even finding it hard to accept news when it is more positive as you always have the nagging doubts about what else could be going on.

I too was thinking how to manage the practicalities of chemo alongside having secondary school age children, a day job (in an office) an evening job (teaching piano), home life etc. I don’t know the answer to that now but hopefully you will be able to discuss the schedule with the oncologist and make some plans. There is a wealth of support on here so hopefully others can suggest some practical tips re chemo.

All I can suggest is to take a day at a time and be easy on yourself. Not only are we facing cancer but we are doing it in the midst of a pandemic! It’s all quite surreal and I don’t think even now, 9 weeks on from diagnosis I have fully taken it all in yet! I have found writing poems to be of some help. Others might suggest yoga or mindfulness; whatever you find helps you.

Good luck with the next appointment,

AnnieV xx

Hi Joy

I can truly empathise. In four weeks in 2018, I went from “I don’t think there’ anything to worry about” to requiring the full works, with two tumours and 19/21 nodes affected. I’d even had a clear mammogram and ultrasound!! So I’m guessing it’s not that unusual for a diagnosis to be changed as they discover more to your particular diagnosis. At least they aren’t missing something. It may take time but trusting your team really helps.

If it helps, I am a lifelong phobic, especially about vomiting, and was terrified. Things are so different now. It’s unpleasant but it’s all manageable and you get through it, inspired by someone telling you you are now NED (no evidence of disease) at some stage in the treatment.

It doesn’t matter if you’re a coper or a wuss, everyone is equal in the world of breast cancer and most people go through every emotion in the handbook (if there is one). You have good reason to feel emotional and every emotion from terror to fury is ok. Painful but ok. It’s also ok to ask your GP for help with this if it feels unbearable. And don’t be fobbed off. Some GPs seem to think, once you’re under hospital care, you’re not their responsibility!! There’s also emotional support here,. Just a few wise words from someone who can empathise can untangle those feelings. At least, that’s been my experience.

In terms of coping financially as self-employed, it might be worth ringing the Macmillan Helpline (work option). They can held you plan ahead and even apply for the support you’re entitled to.

I wish you all the best. I promise, it’s not all doom and gloom (though you can feel hard put to identify a cause for joy at times) - and on a personal note, but also for your worries, please don’t assume that Stage 4 is game over. I’ve recently had my secondary diagnosis and have found there are loads of people who have been living with the diagnosis for many years. Leave me a little hope please lol.

Take care,

Jan x PS. Avoid Google for the sake of sanity x

Hello hun

Your journey has been very much like mine, which started on 15 June. I have not had Oncotype test done but just had axillary clearance and waiting to hear if they were positive. The first steps, very much, small lump and will just cut away. I am so pleased I went with mastectomy, it went from an 11mm tumour to when they removed it actually being 40mm and high-grade DCIS too. Chemo and radiation were mentioned just before the axillary clearance so waiting to see if that will go ahead. 

I am stunned by how my life has flipped in just a few short weeks. After each surgery, I have been very wobbly but found this forum a godsend. As I get physically stronger so my mind starts to be stronger and I can see further than one day at a time, and start to make plans - always with the thought they may all need to change after seeing the doc. It really is a roller coaster and I am slowly learning to ride the ups and downs. I also enjoy mindfulness, journaling, yoga and getting out with the dog. Friends have been great and I have adopted the policy of those closest sharing everything, good/bad and all the scenarios, this helps me talk through it, rationalise and I know they are there to remind me and keep me strong. 

Please keep us updated with your progress, I think you are a few weeks ahead of me. Be strong.


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