Delayed Start Of Chemo ?

Going through breast cancer treatment Chemotherapy
1

Hello

 

Can anyone ease my anxiety?

 

As it stands I am 50 years old, T2N1M0 - ER+ PR- HER2- 

 

I had a lumpectomy on 12 June

 

I was meant to start chemo last Tuesday (todays Friday) but over the weekend I woke up with a horrible virus. Its not a cold I just have a horrible headache, feel very weak and no energy. I called the chemo ward and told them and they set the chemo back until this Monday but I am still sick in fact I thought I was getting better but last night took a turn for the worst and slept 12 hours and today I have no energy at all and a constant low grade headache. (my sinus/teeth hurt for a little while but thats passed) I cannot delay it again! But the chemo nurse said if I am still sick Monday to call first thing and she will defer it for a few days. 

I asked if she could take my bloods and check to see if blood count was Ok and proceed if so but she said as my bloods had been done in the last 2 weeks and were good they would not do them again but I was not sick when they took my bloods. 

 

Im worried because I have a history of chronic sinusitis that goes on and on for weeks and I feel exactly like that. 

 

I spoke to Macmillan on the phone tonight and she said to go in on Monday and ask for bloods to be checked as I have been sick and run down for a week. 

 

Im stressed as I already feel its been so long between the surgery and I know at least one node is involved. 

 

The tumour was thought to be 24 mm was actually 42 mm - it was removed but they needed more margins 

My one sentinel node was needle biopsied and came back normal but when removed, pathologist reported it was positive for cells. So they needed to do full node clearance too. 

My grade went from 2 to 3 also. It upset me as I thought I was early detection and radiation only. I was told chemo needed

 

They booked me in for more surgery for 31 July but due to the shock of the follow up we panicked and tried to go private and in doing so was told I should have chemo before more surgery and this caused confusion as two teams advising two routes, so the long story short is the NHS team said I could have chemo if I wanted it, rather than surgery so I decided to do that. 

 

I’ve had the heart scan and as far as I am aware I’m ok for chemo - I’m to have CT scan this Sunday to torso to check for nodes in chest and under-arm and I am not sure if I am having bone scans. The oncologist wanted them done as I have not had my node clearance done yet so she needs to know what stage my cancer is for chemo treatement. I am so worried about that follow up too! 

 

Many thanks for reading 

 

 

2

Hi Liz

 

That’s a hell of a lot to have to take in so this will be a long reply to try to ease some anxiety or at least show you that you’re not alone. I confess that, when something similar happened to me, I switched off, stopped asking questions and just went with the flow. I went from ‘nothing to worry about’ at my first consultation to full mastectomy and axillary clearance, plus chemotherapy, radiotherapy and hormone therapy as a necessity not an option menu, all within 4 weeks of appointments last Autumn. So I do understand how confused and shocked you must be. Today I did the Moving Forward (after breast cancer) course so I got there!

 

The NICE guidelines advise a maximum delay between surgery and chemotherapy of 90 days so you have plenty of time yet and you can easily delay it if you aren’t feeling well enough BUT the emotional side of things is a powerful driver which may mean you feel you must get started.  You don’t have to be 100% fit either. I had a chemo straight after 4 days’ hospitalisation for neutropoenic sepsis and also one during a nasty cough/cold.

 

When they take your bloods, they are looking for different data compared to the usual blood tests so the nurse is correct that a test within the last 2 weeks is enough, regardless of your illness (she wasn’t being dismissive) BUT it’s not enough for you so ask for a blood test. It’s your body. I’d ring and ask before you go though. If you turn up and then ask, you might find yourself steam-rollered straight into treatment because they are so busy and short-staffed and they’ve everything ready for you. A further blood test will delay your treatment by at least 90 minutes and probably make no difference to the drugs you are given but it may reassure you.

 

I don’t know what treatment you are having but your diagnosis seems similar to my own so it may be the EC every three weeks. If this is the case, you get a good 4-5 days grace after chemo because of the steroids you need to take. That means you’ve time to get over whatever’s ailing you and actually you may feel better. You might also find that chronic things like sinusitis vanish - I haven’t had a headache or IBS since my chemo started (I’ve had loads of chemo problems but my usual health issues vanished and have yet to re-emerge, if they do at all).

 

As regards your tests, the bone scan is very simple though the idea of being injected with a radioactive tracer seems scary - it’s not at all - and it’s almost standard now for people diagnosed with invasive cancer that’s reached the lymph nodes. I had 19 out of 21 lymph nodes infected and the CT scan and bone scan showed no spread beyond them. The lymph system did its job. The oncologist needs these results to decide which is the best drug combination for your treatment and it gets adjusted according to blood results etc. 

 

Anxiety is normal and natural at this stage. There’s so much uncertainty about and you may feel so alone, no matter how many people surround you. There’s no point in anyone saying don’t worry (they probably will) but, as they said on today’s course, 90% of breast cancer patients today survive. That is wonderful! Good luck with the challenges ahead and remember you’re not alone. Take good care of yourself, don’t ever Google and make good use of your Breast Care Nurse. There’s probably nothing they haven’t encountered before.

 

Jan x