Triple negative/ Treatment not working

Hello all,

Hopefully, my post finds folks having a sunny start to the day - Spring is definitely here or is it Summer?

I’ve posted a couple of times before and received some helpful replies and I also look at all the new daily comments as they appear as they’re often inspirational and help to lift my mood and spirits. 

As a tiny bit of background, I’m a normally healthy 54-year-old who enjoys playing sport (swim, cycle, squash, ski etc.) & who was diagnosed March 2020 at stage IV (metastatic lymph node in my thorax).  In the beginning, there was a little bit of progesterone receptor positivity (tamoxifen was started but quickly abandoned as there was progression on scans), although recent samples from thoracic surgery pre-Christmas would suggest that I’m fundamentally triple negative.  Last year, I went through pre-surgery chemotherapy, mastectomy, axillary node dissection (only 1/8 nodes had been positive & the one that was cancerous had “responded” to FEC-T) and reconstruction and latterly VATS (video-assisted thoracic surgery) to remove the lymph node (which had doubled in size during chemotherapy!) and also (unexpectedly) a small portion of lung which was cancerous.  Fast forward a few months and I had another scan, a couple of pleural effusions appeared which were causing problems with shortness of breath etc.  A bit of a saga with drains etc. but had an in-dwelling/semi-permanent one placed and things settled down and I was started on Eribulin.  I was told at that stage that I had some areas in the lungs/ pleura (don’t know number/aggressiveness - I didn’t ask my oncologist generally doesn’t share this detail and has always says he treats the clinical picture) and a larger plaque (3x5cm!) over my heart region which I find terrifying!  The area over the heart has had five treatments of radiotherapy.

I was mid-third cycle of Eribulin, had another scan and then a follow-up on Monday with my consultant - basically, not good news.  I was told that things had progressed (not sure how much as he didn’t show me the scans - he never does as I don’t think he’s great at reading the images and relies on the reports) including the area over the heart which had received radiotherapy.  His conclusion was that the tumours are both chemo-resistant and radio-resistant.  He then gave me two options - stop all treatment or look to another type of chemotherapy.  He made it very clear though that he thought that other types of chemo probably wouldn’t be any more successful and I know that he’s said this before, i.e. if the first type of chemo doesn’t work then it’s unlikely that others would work either.  (I’m not suitable for immunotherapy as I don’t have the right receptors). He strikes me as a very experienced consultant but in the 12+ months of meetings, I’ve always found him a bit doom & gloom & I’ve never come away with the feeling of we can help make this better somehow.  Anyway, I said I wanted to try a different agent (Eribulin is the first chemotherapy that I’ve had since pre-surgery so I thought it was a bit soon to give up - is this budgetary or is there something darker going on with my cancer?  I wonder as a skin lesion has appeared above my left breast region in the last couple of months (they’re assuming it’s a metastatic lesion) which has grown quite quickly; so maybe this is the same as what’s happening internally?

I’m being changed to capecitabine and I’ve queried (I sent him an e-mail on Monday later on after I’d managed to calm down & phoned his secretary to make sure she’d go it) if there are any other options for the area over the heart, e.g. thermoablation, cryosurgery, internal radiotherapy (yes, I’ve been googling options!), referral to the cancer centres in Edinburgh or Glasgow (I’m Dundee-based; a smaller city with a small unit - maybe other options in the bigger centres but I’m doubtful!).

Can I ask if others have come across this slightly negative approach, i.e. this treatment hasn’t worked and so now I’m sceptical that anything else will? I mean there may be good reasons for his thinking but he hasn’t shared the thought process with me and I’m now just left feeling I’ve got a death sentence.  The other thing that the team keep asking is if I want to know my prognosis/ how this all goes.  I’ve said no so many times now as I genuinely don’t feel I want a figure in my head which will only worry me (my will/POA etc. are all in place & I’m in the process of retiring on health grounds) but the very reason I’m constantly being asked this worries me now! 

Otherwise, has anyone ever looked at some of the private companies (Oncologica UK) that offer to “match” your tumour sample to a range of drugs to find the most optimal one?  I’m just looking but it may be the drugs haven’t gone through trial stage/ may be unavailable in the UK etc.  I’ve asked my consultant for his thoughts on this too and the company have offered a free chat to go through all.  Yes, I’m grasping at straws!

Anyway folks, all have a lovely day wherever you are and hope to see some posts on the forum soon.



Hello @JIF  

Goodness, Jennie! What a rational, eloquent and generous post from someone who clearly has so much on their plate. I am afraid I cannot offer any helpful or informed answers to your questions and observations, but neither could I pass by without acknowledging your predicament and offering a virtual galvanising hug. I do hope that others will soon be along who are able to give more helpful advice. 

Good luck with your treatment and stay the powerfully strong and positive individual that you so clearly are.

Love Pat x

JIF Do look up metupuk, they might know of other options on treatments available to you. Also MD Anderson in Texas worth keeping eye on and their treatments and asking your onc about them too You are amazing :two_hearts: :two_hearts: :sparkles: :sparkles: Shi xx

Hi Jennie, 

So sorry you are going through all this. 

I hope someone will be along soon who can help.

Angel Eyes x

What a horrible experience. I made a point of requesting a specific oncologist when I returned to the fold after only two year and he’s very much on the ball but thwarted by Covid-29. My MBC has been identified at the triple negative one, chiefly in my eye socket and in skin lesions on my neck and chin. My scans are ambivalent about my endometrium, some left-behind lymph nodes and maybe my sternum but little ever shows up on MRI and CT scans. Hopefully my next scan will be a PET scan.

Like you I failed the immunotherapy entrance exam so I’ve been put on Capecitabine (of which I’ve only had three doses so far, three more than I expected given the size of the tablets). However, my oncologist had been discussing me with a colleague who, they believe, has the perfect drug, It has finished the research phases so I can’t join and is simply waiting for its licence. Unfortunately all attention is focussing on covid, so my oncologist can’t be licensed to use it. His point is, there are several new drugs either waiting to be licensed or close to completing research, giving me greater optimism that he will adjust my treatments as new things come along.

Unlike you I steer clear of Google. What I learned from it last time would have been more sensitively put by a breast cancer practitioner who knew my circumstances. Like you, I don’t wish to know my prognosis - there’s nothing I can do about this cancer except comply as far as I can and trust my consultant, I’m fully aware that this treatment might not work for me. But I’m led to believe that there will be other treatments in the future which does rather make me optimistic.

Mentime, I’d love to know how you get on with capecitabine so please reply when you’ve something to report?


Hi Jenny

you are certainly going through the mill. Very briefly I had primary breast cancer in 2005 with pre and post chemo, double mastectomy and radiotherapy and then bladder cancer appeared in 2017 with surgery and immunotherapy. I then had secondary breast cancer on sternum. I had targeted therapy of aberciclib and Letrozole and also cyber radiation.  After two years they found eight further tumours in my chest. After research I went for a second opinion at Royal Marsden - an amazing oncologist who is very much involved in research - Professor Johnston. He decided to carry out a Garden 300 blood test which identified the cancer. His had to be sent to America and we were prepared to pay for it but got cover in the end. They found out that the cancer had mutated and he then changed meds. I will be having a PET scan in December. So fingers crossed but my friends daughter has triple negative and they have contacted Marsden as I think but don’t quote me they are doing trials at the moment. Might be worth a phone call. You can have a telephone consultation with him which does cost but I think worth every penny. After this treatment I am going to repeat the consultation. 

good luck and hope this helps in some way.