Hi everybody,
I am new to this forum and a little unsure how to use it, so I hope I don't make any bloomers!
I will give a little background on how I came to be in this position with secondary breast cancer. I had TNBC in 2019, treated with surgery, chemo and radiotherapy. The take home at the end of the treatment was that they never expected me to darken their doors again as it was caught early and treated aggressively.
In 2021 a lump was found at one of my check ups in the right breast. Diagnosed as HER2 positive and oestrogen positive. Treated with surgery, radiotherapy and chemo but different drugs to the first to avoid giving me further peripheral neuropathy. I was also give letrozole to take for 5 years.
In February this year 2 metastatic lesions were found in my sternum. Because the oncologist was unable to get anybody to do a bone biopsy on the sternum he decide to presume as it seemed the most likely to him, that the secondaries were from the second cancer. Apparently TNBC secondaries do not often go to bone and if they metastasize do so within 3 years. Anyway at the last moment before treatment was about to start he referred me to an oncologist at Addenbrookes for a second opinion. Turned out it was the oncologist I was treated by in 2019 and 2021, happy days as I already had a good relationship with her. She got me a bone biopsy and guess what the secondaries are from the 2019 breast lump which was triple negative. Sadly all other tests that were done on the bone biopsy and stored lump showed the PDL-1 test was negative, so no immunotherapy for me. The secondaries are low HER2 positive but the possible additional treatment, enhertu, is not funded by the NHS for HER2 low breast cancer.
My treatment for the sternal secondaries has been radiotherapy and I am currently on tablet form chemo, capecitabine.
I wanted to reach out to anybody else with secondaries in their sternum as my oncologist as not treated anybody else with this and we are both struggling to know what is normal pain to expect. I get a lot of pain in my jaw enough to make the muscle tight and then it is difficult to open my mouth without clunking. I get pain in my thoracic spine and pain in the sternum but this is in the form of very sharp stabbing pains. I am on maximum pain relief with oramorph if the pain becomes uncontrollable.
Sorry for such a long post.
Dibdobs
Hi Dibdobs
I have secondary TNBC. Mine spread to my liver, which is I think typical of TNBC. Like you I had always understood bone metastasis from TNBC was rare. I was perhaps luckier in that mine is PD-L1 positive so I was able to have pembrolizumab immunotherapy alongside yet more Paclitaxel. It was a rough ride but it has so far given me a remission. Trodelvy has been touted as my next line of treatment if and when I need it.
I am sorry you have what sounds like very bad pain from your secondaries. I am one of the community champions on the site and I have seen several women managing pain from bone secondaries. Whilst these women usually have ER+ cancer and therefore have more treatments available to them than you have, the issues in managing pain will be the same. I hope someone will come along and share their experience.
I know consultants can sometimes make special cases for drugs and I wondered if that was an option regarding Enhurtu. It’s so annoying given it’s approved in Scotland. I think Breast Cancer Now have been / are running a campaign to try to get this changed. You might want to add your signature to their campaign.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I am a Macmillan volunteer.
I have metastatic Triple Negative Breast Cancer, in remission
Hi,
Thank you for responding to me. Lovely to hear that you are in remission long may it last for you.
My oncologist is referring me to a pain specialist. Hopefully he can help. Just to add insult to injury I have one sided skull pain. Nothing to do with the cancer. It was diagnosed as a type of migr
ne by one neurologist. It doesn't feel like any kind of migraine I have ever had. I went to a special headache clinic in London and it has been diagnosed as hemicrania continua. I am on a course of indomethacin at the moment which if the diagnosis is correct should abolish the pain. 8 days in on a gradual increasing dose it is no better. The other alternative is occipital nerve pain for which thwill do a nerve block. I am just a rattling (from the all the medication) bag of pain at the moment.
I am about to start the third cycle of Capecitabine.
Our daughter is expecting a little boy in two weeks so that will be a happy distraction. Sadly the live a 100 miles away and travel aggravated my pain. It will be a grin and bear it job with regular doses of oramorph.
Dibdobs
I was delighted that both my daughter and daughter in law gave birth last autumn, 2 months apart. I had been fearing I wouldn’t live to see any grandchildren and suddenly I had 2 grandsons. Both 2 hours away but lovely. I hope yours arrives safely.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I am a Macmillan volunteer.
I have metastatic Triple Negative Breast Cancer, in remission
