Triple negative BC and a mastectomy

Hi all, 

I found a lump on 8th June 2021 and it was obvious that something wasn’t right.  I was referred and saw the breast clinic within 2 weeks.  The surgeon told me there and then that it was cancer. 

At the follow up appointment it was confirmed to be triple negative breast cancer, invasive ductal measuring 34mm. 

It was planned to be 3 cycles of EC to be followed by 6 cycles of paxlitacel and carboplatin.  I had my first cycle of EC but the breast seemed infected, so contacted the ward.  I was prescribed very strong antibiotics.  At my chemo check up appointment both the doctor and nurse were concerned and sent me to have an ultrasound.

I was scanned three times, by a more senior person each time.  They couldn’t find any sign of infection and told me they couldn’t determine where the tumour started and ended.  Looking at the ultrasound screen it looked like mush inside my breast.

They decided to switch chemo to paxlitacel and carboplatin.  I had a reaction to carboplatin, but it was decided to continue the treatment but slower with a saline drip.

Four days after the new chemo I was called in by the surgeon who informed me chemo had to be paused and that I now needed a mastectomy.  This was mid August, only two months after finding the lump.  I was told by the surgeon that he felt that about 40% of the breast involved.  As the breast looked inflamed and infected, he’d have to take quite wide margins.

I underwent a fully mastectomy of the left breast on 3rd September.  My lymph nodes were clear, but the tumour was 44mm (30% growth in 3 months).  It had not responded to either of the chemos.

I had staging scans, no matastis disease detected.  I had 15 session of radiotherapy.

My chemo team felt that given the nature of my tumour I still needed to have chemo. Thankfully it was oral chemo, capecitebine - usually used for aggressive cancers and metastasic cancer.  I am quite tall and we’ll built so was prescribed 5 X 250mg morning and night. Quite a heavy dise

I tolerated the capecitebine reasonably well until a couple of months ago.  I felt tired, weak and slightly breathless.  We continued on with another cycle.  Three weeks ago three breathlessness became too much, and my doctor ran tests: ECG, x-ray, CT and heart ultrasound.  This revealed a small blood clot on the lung and a single ground glass nodule measuring 6mm.  They suspected the nodule to be infection so I was given antibiotics. Some of my bloods were raised too.

I am still having daily injections of blood thinners in my tummy.  The antibiotics didn’t do anything. I was given prednisolone too deal any inflammation in my lungs.

Sadly there’s no improvement in my breathing.  I am breathless on little exertion.  My CA 15 3 count had gone from 29, to 33, to 36.  Although they didn’t find any metastasic disease in the scans.  My liver blood test has rocketed.

Chemo was paused to help relieve the breathlessness. I feel in limbo.  I’m worried about my bloods, the blood clot, and my liver.  I also worry about being off of chemo for so long. 

Hi Snookie

As someone with triple negative cancer too (unfortunately mine has metastasised so I’m now Stage 4), I can understand your frustration. I went through my primary treatment completely oblivious to the fact that one of my tumours was TN!

I’ve been led to believe by my oncologist that he would be reluctant for me to have a delay in chemo, that once capecitabine stops working for me, as it seems to be doing, I’ll be moved swiftly onto the next line of treatment. Like you I have breathlessness and, some days, overwhelming fatigue, as well as a few other inconveniences, but I can’t say I feel ILL. I just know my blood markers are stable but my tumour is still growing and my skin mets are changing. Something is amiss but the evidence is contradictory.

You however do have underlying health problems and they have to weigh up the impact of the chemo against the risks to your health and quality of life. Have you had a reduction in the dosage at all? I found just a small tweak made a significant improvement in most side effects and now it’s mainly fatigue. Your data and samples will be all over the country as your team explores trials and new treatments elsewhere, things that may work for you. But you need reassurance. I would advise you to ring your breast nurses service and ask if you can have a consultation with your oncologist as soon as possible. It may be a phone consultation, or Zoom, rather that in person. You have many questions your want answers to so write them out and stick to them. Get the answers you need, such as what is the risk of being off any kind of chemo for x weeks? What’s going on behind the scenes, if anything? 

I really do understand the fear that any delay will send those nasty little TN b**gers all over the body. You don’t have metastatic breast cancer though so you need to focus on your general health. If chemo is going to trigger bad responses in key body functions, then it’s the wrong chemo for you, even if it is the go-to one for oncologists. It may well be they are still consulting on what your next treatment will be and believe your curse of radiotherapy has things under sufficient control to isn a delay while yur body recuperates.

But that’s conjecture. You really need to ask your team. Wishing you all the best,

Jan x