Secondary Breast Cancer in the time of Covid - a Rant

Hello Everyone,

Is anyone else finding this on going pandemic making our already bad situation even worse. How many of us I wonder are victims of Covid without ever having had the virus? I feel I am. I have atrial fibrillation and tended to get short of breath. During the pandemic during our daily walk I felt the breathlessness was getting worse. I told my cardiologist over the phone but was “reassured” that it was due to the medication. Then he took himself off to self isolate due to asthma with no one deputising for him. The hospitals pulled up the drawbridge and GPs closed their doors. I needed to see a dentist and once they started up I went to see mine. I can still see a dentist quicker than my GP! A small lump in my mouth turned out to be malignant so I was sent for a CT of my chest. My lungs were full of metastases and it took 8 weeks to get a biopsy which revealed it was secondary TNBC. My oncologist ( yet another phone consultation) prior to this hadn’t been worried about my increasing breathlessness either. This was after a recurrence 3 years earlier! When my cardiologist phoned (still no face to face) and I told him the diagnosis he couldn’t get off the phone fast enough! The next appointment with him was for 8 months later by phone, I think he hopes I’ll be dead by then.

Treatment eventually started in May 2021, with no sparkling results but all the side effects. With a much reduced immune system I know if I get Covid my days will be numbered so to all intents and purposes I am self isolating. I imagine other people in the same boat are having to do the same. So the rest of the world now thinks the pandemic is over and the young ones particularly are oblivious to those of in society who are still vulnerable. Why can’t they wear masks when in shops and is it so hard to keep social distancing? I love socialising and seeing my friends, it perks me up no end but now we can’t meet in the garden that happens less and less. I think my mental health is suffering as a result.

How does everyone else feel and how are you all coping in these strangest of times?

Lancashire Lass


I completely get it. I was in regular phone contact with oncology throughout the pandemic because we were trying to sort out long term side effects (primary chemo attacked my tendons so my joints were so painful and I couldn’t do simple things like pull up a weed or wring out a flannel). But could I get hold of a GP?? I dismissed my early symptoms as unimportant in the pandemic (never occurred to me that a red eyelid was a symptom of cancer) but, once they’d got noticeably worse, my GP showed no interest. It was ringing the nurse here about something else, about 4 months further along, that took me straight back to oncology, in person, the next day. It was still another three months before SBC was diagnosed and another month to establish hormone-receptive or TN. Unfortunately it was the latter. So, like you, secondary bc was spreading during the pandemic with no easy way to get a diagnosis, let alone treatment. In fact, it never occurred to me it was BC again!

I’ve found no consultant seems to want to interact with another in another field. My cancer is in my eye socket. It was left to Ophthalmology to sort that out. They found the cancer and passed it back to Oncology and, despite saying they needed to see me every 2 months, I’ve not heard from them because I’m under Oncology. Equally, Rheumatology doesn’t want to know, let alone Neurology which I was referred to 2 years ago!  Oncology RULES! That’s probably right because, without treatment, we wouldn’t survive, but other things do need attention and it’s bloody frustrating.

I’ve resolved my socialising by getting a summerhouse with folding front doors so there’s plenty of air-flow and a bit of shelter. I need to find out how to heat it now! But I’ve been shielded throughout, have been advised to continue shielding till I’ve had my third vaccination (and what a palaver that was. It’s now on Thursday) and my flu jab (impossible - all the pharmacies are booked till December and my GP practice has no further supplies!!). I’m so looking forward to being back to some semblance of a life but there are so many obstacles put in our way. I don’t think the emotional side of SBC is considered much at all by GPs and hospitals. We need to educate them!

Rant over. I hope you see you aren’t alone in your frustrations xx

I’m sorry to hear about your experience Lancashire Lass.  Mine has been completely different.  I had my first face to face diagnosis of incurable Stage 4 sbc in March 2020, right before lockdown, at the Christie.  After that it was monthly blood tests and 3 monthly CT scans in a very safe and almost empty Christie followed by thorough telephone consultations, with time to talk and ask questions, plus e mail and telephone contact with the consultants secretary and thé MacMillan staff when I was concerned about anything.  After a bad reaction to a bone strengthening infusion thé consultant saw me face to face once.  And I was invited to an Christie annual sbc presentation, on line for the first time in 2020, where 6 hours of presentations  were made by the consultant, MacMillan, dieticians, Maggie’s, and 6 women with sbc - and questions could be submitted and were answered.  So much information and an amazing effort from them, really helped me and my husband.  

 I am lucky in both my GP and dentist, they are both wonderful.  My GP responds quickly to any Ask My GP requests, and has seen me face to face once for a recurrent earache.  I  always make  sure that they  are thé practioner I see or contact when I need to.  I have also, in the past and during the pandemic, let them, their practices, and the Christie know how grateful I am for the NHS, the training they have done and the service the particular practioner gives.  I do know I am extremely fortunate, but I have also used what controls I have in my choices to make it the best for me.  I know that’s not possible for everyone,   My only difficulty was being unable to see the dentist for about 6 months before I could have a bone strengthening injection.

 It hasn’t been good not seeing practioners face to face but we should remember that they have also been at risk of covid, they have worked in hospitals during the pandemic, they have opened their surgeries for covid jabs, mine is doing weekend blood tests to help the local NHS hospital, they  have had increased workloads due to covid, and there is a huge shortage on NHS staff across the board.  

I am almost 2 years on, stable mets, cancers shrunk significantly, still incurable but very grateful.  If you can do anything to change your experience to a more positive one please try it.  One of the best pieces of advice on a forum was to take control of what you can, and that has served me well. 

Hi. It’s not just you for sure. I found a rash with small lumps a bit before Xmas. My gp wasn’t sure but since it was at the same site as my previous tumour referred me to the urgent breast clinic. Nothing. I followed up but nothing. They said they have a huge backlog. I’m lucky that I could pay to go privately. (Though that can’t last). Even with positive biopsy requiring surgery I couldn’t get into the nhs without a long wait!  This is disgraceful I think.