No mans land

Hi am looking for some advice as my heads a bit of a mess at the moment please, 

I have underwent a mastectomy just under 2 weeks ago as the tumour was lobual 6.9 cm, HER2 negative estrogen positive and following a lumpectomy because of the size of the tumour following the pathology results it was recommended that I have the mastectomy. This was ok and am at present trying to build myself up following a bout of flu to boot. my consultant also compleated a full node removal and the results showed it was only on 1 1/2 nodes which he said was positive. He did say that following the lumpectomy that he did get clear margins. I am at present waiting for an appointment to see an oncologist to see what my treatment plan will be. I feel as though I am in no mans land at the moment as can’t seem to move forward until I see her. I don’t know if I am being paranoid but I have an ache where one of my overies is for the last two days and keep thinking it has spread. My husband said it won’t have Following the result of my lymph nodes but I have read that it can spread through the blood supply. I was just about getting my head around moving forward, but this is starting to put my anxiety levels up again. Any advice would be greatly appreciated xx

Hi Chris, it’s a very scary time when you’re diagnosed and discovering the outcome of various tests and scans.  I was diagnosed in March 2017 with a stage 3 90mm tumour with 9/12 nodes positive and here I am, almost 2 years on since finishing treatment. I know from experience that no matter what I say you may still convince yourself that it is spreading but remember the additional surgery was to get rid of it.  Have you had feedback yet on your additional surgery to confirm clear margins?  Here’s my story which you may find some comfort from:

Well done so far for getting through the surgery.  There are lots of us doing very well but not everyone stays around on here after finishing treatment.   Sending hugs. 

Hi Christine


I’m so sorry you find yourself in this horrible place. As Mai says, we’ve all been there. The fact is, there’s an awful lot of us, with steadily falling staffing levels, and waiting is something you will learn a lot about if you go through the NHS. However, you will get excellent treatment. NICE guidelines specify a maximum of 90 days between your surgery and the start of chemotherapy (if that’s part of your treatment plan, possible given the positive node(s) involved). Not bragging but 19 of my 21 lymph nodes removed were affected lol. Well, here I am, cancer-free, NED (No Evidence of Disease) and just had my first annual check. So please don’t fret about those nodes. They do a damn fine job. They catch the rogue cells and stop them going elsewhere. Mine obviously were hanging on for dear life - but a CT scan (Nov), a bone scan (Feb) and an MRI (Aug) confirmed no spread elsewhere in the body. I am eternally grateful to my nodes. 


You said “I have read…” and that set off the alarm bell in my head. Please don’t use Dr Google. If you need to know something, ring the number at the top. The nurses are wonderful and have helped me each time I’ve spoken to them. Google is impersonal, has no emotional intelligence and cannot adapt to individual circumstances. As such, it’s a dangerous tool at a time like this. I went through the whole thing in almost complete ignorance (I didn’t even know my official diagnosis) in order to cope but at the end, I googled something and oh how I wish I hadn’t. As my amazing breastcare nurse said, what’s read cannot be unread. That doesn’t make it right. 


While you’re waiting for an appointment, if it helps you feel better, you can still ring your hospital to find out how soon. Start with your breastcare nurse. They are used to our anxieties. I had a long wait as I transferred from private surgery to NHS for chemo etc - my first chemo was Christmas Eve, to make sure it was squeezed into NICE guidelines and that wait from mid-October felt interminable. But you will manage, Christine. You may feel your head’s in a bit of a mess - that’s because you are human and facing one of our biggest challenges. You’ll be amazed at what you achieve! And, if anxiety feels overwhelming, go talk to a sympathetic GP. Don’t suffer in silence.


Take good care of yourself and I hope you hear soon,

Jan x