Gosh that sounds so similar to my experience (including matching onco score) and I can really empathise!
I decided to go with chemo in the end as my oncologist was so reassuring that they would do everything possible to minimise the effects on my life (and work). I think given that I had 6 nodes positive (out of 32) it tipped me over into chemo being 'beneficial'. I'm seeing it as a 'belt & braces' approach! And I start tomorrow - yikes!
How did you finding recovery from the clearance? That's been quite a slow recovery for me but I'm getting there and really glad I had it now having been given the choice between that and radiotherapy on the nodes. It's awful when they put the decision into our hands isn't it?
Given I'd had such a rollercoaster of good/not so good results I just decided to throw everything at it in the end. And also try and face the whole chemo thing head on. Had my hair cropped, have an amazing wig (paid for by the good old NHS!) along with numerous scarves and even had my eyebrows microbladed. All helps me feel like I'm in a little control! Visiting the chemo suite and meeting the team also helped hugely.
I know that head spinning feeling and wish I could give you more guidance but I'm here if you want to ask about my chemo once I get going - when do you have to make the decision?
Sending you huge hugs and strength.
I have discovered today I am in a very similar position to you and just do not know what to do.
disgnosed with grade 1 BC in June. Very scary but all pretty positive as was small and did not look to have spread to lymph nodes. No need for chemo
results from initial surgery then showed 1 of the 2 lymph nodes was cancerous so needed to have full clearance.
onca score 14 so was unlikely to need chemo but needed the results of clearance to be sure. Further 12 removed and 1 was cancerous so in total 2/14
i has totally got my head around having chemo as was sure that is what they would recommend
had appt today with oncologist who said that the income code meant that the likelihood of survival at 8 years was 99 percent which felt amazing. He then said based on the onca score of only 1 node was cancerous then he would not recommend chemo and if 3 were cancerous then he would advise chemo but given for me it was 2 it was my decision and he would support either way!!
I just do not know what to do and how I can make the decision. I was of the mindset that I would throw everything at it so I felt I had done everything possible I could have done and just accept that I was going to have an awful few months but now I am just not so sure as there does not appear to be a statistical benefit of me having it - or maybe I just did not ask the right questions! My head is spinning right now xx
so glad ur CT is clear xxx
i am like you was terrified of chemo for obvious reasons
decided to go for the trials where a test is done to decide if you need Chemo or not ?
it will take 2 weeks to get results after your histology is sent to the trials people .
i had surgery last month to remove lump and had 19 nodes taken out.
trying to stay positive 😊
Good luck with oncology or MDT
Just a quick update on my progress.
Got the results of my CT scan which was thankfully clear. My oncologist actually called me from her mobile at 8.30pm with the result as she wanted me to 'get a good night's sleep'. It was the first time I'd even spoken to her - amazing lady. I now have a Teams virtual appointment with her for an hour on Thursday to discuss next steps.
Currently enjoying the feeling of not waiting for any results for the first time in 2 months!
Having initially been terrified of chemo I'm starting to feel a little more brave about it - just need to hear the case for it from the oncologist I think.
Hope everyone is doing OK.
Love and hugs
Thanks so much everyone for your replies, it really helps to hear other's stories and I'm so sorry you're all going through this, but hearing how you all cope is giving me hope and strength.
@Jaybro I must apologise for sounding so fatalistic about Stage 4 - that was my demons getting the better of me - reading some of your posts has helped me smack those little b*ggers down a bit. I truly wish you continued strength and positivity. Funnily enough I also suffer from a life long fear of vomiting, as does my sister and niece.
I had a really good chat with one of the helpline nurses here on Saturday. She was incredibly helpful, not only with the humungous seroma that's taken up residence in my armpit (getting it drained tomorrow thank goodness), but with my overwhelming collection of fears.
Had my CT scan this morning and I think my first appt (via Zoom) with my oncologist is due at the end of the week - so will keep you updated. Just want to get on with things now!
Thanks again for all the support and hugs - hugging you all right back.
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.
I haven’t started radiotherapy yet. I believe I will get an appointment in the next couple of weeks for planning it & then the treatment will start within four weeks from then.
I will start on the tamoxifen on Monday; just wanted to pause for breath before starting the next thing & try to make the most of bank holiday weekend.
A creative project sounds like a great idea; helpful both as a distraction & a way of processing all that you are going through while retaining your sense of identity.
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.
Jan x PS. Avoid Google for the sake of sanity x
Thanks for replying, Annie. I’m quickly learning that yo-yo effect is part and parcel of the whole cancer thing. It’s all so individual.
Trying to take one step at a time - just feeling overwhelmed at the mo.
Really glad to hear you’re moving on to radiotherapy and Tamoxifen. I totally relate to that feeling of not wanting to accept positive news without those nagging doubts! But it sounds like you’re in a good place 😊
I’m a designer and writer by trade so seriously thinking of channelling all this into a creative project. I love that you’re writing poetry!
All the best for radiotherapy - have you started yet?
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,
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.