Should I be worried about the time it’s taking?

Hi I completely understand your limbo state. I found a lump in Dec 22, after biopsy and ultrasound they informed me it was not cancer and looked benign. After results they informed me it was in fact cancer and a grade 2 IDC of around 37mm. Then after that they booked in mammogram and bloods for genetic screening being the first in my family. Followed by that an MRI with dye to check for any changes before what they said would be a lumpectomy. When I had my follow up appointment only last Tuesday I was told it was bigger 56mm and showed swelling in the lymph which they was not sure was from biopsy or metastasis and that due to size I would need a mastectomy. It’s March and I’m now waiting on yet another biopsy and US in my axilla and an appointment for reconstruction. Following this they hope to do surgery in May. 6months later 

I’m on tamoxifen and have been since my fertility decision as mine is oestrogen fed. I’m 35 and I’m terrified. 

Hi

I’m so sorry you find yourself in this position and, yes, it is a long time between initial tests and surgery. However, your team would not put your life at risk. Ductal cancer is slower moving and, according to my oncologist, most breast cancer cells are “relatively sluggish” so rid yourself of the image of cancer cells running rampant round your body.

Some tests are quite quick or even produce immediate results, but some take time and it’s essential they have all the data they need before proceeding.  Had they performed the lumpectomy and then node involvement was revealed, further surgery would have been required. You may too find that having a mastectomy and reconstruction is a reason for delay - it’s major surgery.

Obviously, just going by this so far, 6 months would be an outrageous delay but, although it’s only a tablet, tamoxifen IS your adjuvant cancer treatment and your tumour may already be shrinking. If the US and biopsy reveal node involvement, your treatment plan may be changed but for now, tamoxifen it is. You are already receiving treatment. Sometimes with hormone-receptive breast cancer, tamoxifen is the sole treatment, sometimes it’s alongside radiotherapy. The fact that you are on it suggests that they weren’t considering chemotherapy. This may change if the nodes are affected - but nodes can be enlarged for many reasons (I have some that are permanently enlarged but are not cancerous) so don’t assume your diagnosis is going to get worse.

There is a LOT of waiting now you’re in Cancerworld. Now’s the time to do something useful - work on building up your resilience as it’s a long time to be terrified. People find things like mindfulness, meditation, yoga, running, knitting - whatever suits you - can make a huge difference. There are NHS-endorsed apps like Calm and Headspace with lots of material to help you build up resilience. Personally, I’ve used Progressive Hypnosis’s free videos on YouTube for 4 years. The important thing is, whatever you do, you do it regularly (at “terrified” I’d say several times a day till it’s automatic - diaphragmatic breathing, soothing, escape, that kind of thing). It will stand you in good stead.

Meantime, steer clear of Google (I think everyone would say that - you don’t know enough about your specific cancer to filter the information and Google doesn’t care if it scares the wits out of you if you read something frightening but totally irrelevant to you). If you have questions, your breast care nurse or consultant should be able to help you (have you asked directly about the delay?) and the nurses’ helpline here (number top right) is a fantastic service.

Hope the upcoming tests reveal tamoxifen is working and your treatment plan stays on track, and remember to work on that anxiety/stress,

Jan