Waiting for staging results agony

Brand new to this. Noticed a swelling under my arm on Xmas Eve. Had core biopsy of 2 enlarged lymph nodes and 7mm nodule in right breast found on ultrasound and received diagnosis on 10/1. Surgeon said looks high grade. Had contrast CT & MRI last week and going for the results on Monday. Nurse called and said oestrogen receptor negative, awaiting HER results. Had a clear annual mammogram in September 2017 - this has come on so quick. Strong family history of breast and ovarian but my Mum actually tested negative for BRCA in 2006 hence didn’t pursue prophylactic mastectomy option - there’s something going on though with the genes somewhere… The waiting is awful - every ache and twinge anywhere translates to a secondary in my brain and it feels like it’s just merrily growing away and spreading day by day. Just want to crack on with fighting it - think they are thinking chemo first which terrifies me leaving the tumour there as how do they know it will work? Any advice on how to deal with the waiting appreciated…

Hi Woodie, 

I’m sorry you have had to join us, this is the worst part of a diagnosis when you are waiting for the full picture so you can get on with treatment. HER 2 results do tend to take longer but they need to know as there are targeted treatments if you are positive.

 

The way I coped and I know many other ladies here do is to take things one step at a time, your brain can only deal with so much and endless going over the what it’s will drive you mad! 

 

A lot of ladies have chemo first and it’s a great indicator of how well you are responding by how your tumour shrinks, some disappear altogether. 

 

It’s natural to Think that it has spread every where we all do at this stage but in reality only a small percentage are diagnosed with secondary cancer from the off. 

 

I understand this is a huge shock and so much to take in especially after a clear mammogram a few months before but you were on it the minute you had concerns and that is all we can do! 

Things will become calmer once you have all results and a treatment plan and you will surprise yourself by how well you will cope Xx Jo 

 

Thanks Jo really helpful just to hear back from someone who’s been there - eyes leaking again now - they’re doing that a lot these last few days! X

Thank you Jo - will take your advice, gather myself up & try and make the most of the day - another step nearer to Monday & finding out what’s what x

Hi woodlie. I was diagnosed on 29th August, had bone and ct scans and the waiting for those results was the worst time. I had convinced my self it had spread but it hadnt.

I was so terrified about chemo that i didnt think i would make it to the first session. Peole on the forum, like Jobey68, reassured me and this week i will have my 6th chemo.out of 7. it has been doable and manageable. There have been tough days but i have cooked tea most nights and life has been as normal as possible.

My small cancer has shrunk and my oncologist said this week that she cant feel anything so having treatment before surgery does show them how effective it is.

Good luck tomorrow. Once you have your results and have your treatment plan in place you will feel more in control xxx

Thank you Ali, so glad I posted in the early hours of yesterday when was feeling so lost & scared - can’t tell you how much better I feel for hearing from you both. How do they know the tumour has shrunk I can’t even feel the 7.5 mm tumour in my breast just the 2 lymph nodes in my armpit - do they repeat scans? Xx

I had a repeat ultrasound after my 3rd fec which showed shrinkage x

Thanks Ali - got my plan now. They’re going for mastectomy & axillary clearance followed by 18 weeks chemo & then radiotherapy. It’s triple negative & MRI showed one positive internal mammary node too as well as 2 axillary nodes. Let the scary journey begin…

I am glad you have your plan Woodlie. You will feel more in control and can now take things a step at a time.

You will be in go9d hands every step of the way and i know 18 weeks seems so daunting at the beginning but i have my last in just over 2 weeks and the time has gone quick. I concentrated on the months. Sometimes only one treatment in a month so i could cross that month off!!

Just take things 9ne step at a time. Take support from wherever you can and want to and stay on the forum where you will get lots of help, support and advise. Lots of love xxx

Can I ask how you are feeling? I think I will be at your stage the week of my daughter’s wedding on 18th July - not how I had anticipated it being mother of the bride at 50… Are the chemo team able to work round important dates at all in your experience to let you live a bit of your life or is it rigid? X

Hi Woodie
My chemo team dont like to have more rhan one day change each cycle. So if I had last cycle on Tuesday, the next could be Mon or Weds but if it was Monday, then Weds is too far apart:) If you have a bad cd or infection and then it can be delayed but thats because it needs to be
Also need to sort bloods etc b4 treatment and of bliids arent good that can cause delay. Good luck.xx

Hi Woodlie, i had a weeks delay due to a uti and then the next round we had a big family event so i asked if it was posdible to delay my treatment for a week so i could go. My onc said it was perfectly reasonable and let me delay. The party was a week ago but if it was this week i couldnt have gone.

Some people have had several delays due to infection, low bloods etc.

I am sure they will sort something for such a special occasion as your daughters wedding xx

Thanks both will get through my mastectomy on 1st Feb then when I see my Oncologist for first time let him/her know & hopefully they’ll plan round it. Wishing you both well xx