Hi all,
I’m really struggling with some new symptoms and hoped some of you guys might have had similar experiences or advice.
I was diagnosed Dec 2020, grade three, triple positive IDC, node neg, at 32yr old. Had therapeutic mammoplasty, some chemo, rads, herceptin and now on letrozole. I have brca 2 gene mutation so also had oophorectomy.
The last couple of months I’ve had pain in my arm on my cancer side. The pain has become a constant nag, and at night I often wake up in pain and with tingling, numb fingers, only on that side. I’m also covered (legs and arms) in bruises, with no obvious injury.
The pain in my arm feels very different to letrozole body aches, it’s more of a burning pins sensation.
My consultant thought lymphedema which has been ruled out following an ultrasound. And apparently my blood work isn’t showing anything obvious.
I’m obviously concerned it’s bone mets and wonder what the next steps should be.
Any help would be great
Pip xx
Hi Pip
Sometimes it’s very hard to let go of the fear that this pernicious disease will crop up again. You are wise to be alert to changes that don’t improve over time but if your consultant has looked into it and isn’t concerned, surely that should reassure you. A bone scan would have been the next step if your consultant was worried. You are entitled to ask for a second opinion of course.
Obviously none of us can diagnose but two things occur or me, based on my personal experience. Nerve damage is unavoidable in breast surgery. My surgery was more extensive as I had node involvement but what you describe is very similar to what I experience in my left arm, an intermittent burning pins and needles, often worse at night or on waking up, presumably because I’ve lain on it. I even get a tender elbow. These are the consequences of the surgery I had in 2018. I know they are not secondary breast cancer because I’m being treated for that and nothing has come up on any scans. The other thing I experience is neuropathic pain which exaggerates our response to pain. Mine was brought on by chemotherapy in 2019 and my GP controls it with medication.
So I’d suggest your next step would be to decide if you trust your team/oncologist and if you feel a bone scan is necessary to reassure you. If this is the case, you need to request a second opinion. If you decide you do trust your team, then see your GP to see if any medication can alleviate the pain. Amitriptyline is, I believe, most common, followed by gabapentin and then pregabalin (which is brilliant for anxiety too!). You might also find it very helpful to talk to a neutral professional - I strongly recommend a call to the number (Top right) above. The nurses are so reassuring, well informed and great listeners. They may have something else to suggest as they re breast cancer experts.
Meantime, please don’t ruin your peace of mind and your enjoyment of life. If it comes back, it comes back - anticipating it will keep you on constant high alert which really is not good for the body or the mind. Unless you have been warned that it’s likely to come back (as I was), try to let it go and trust those who specialise in the condition and all its nasty tricks.Take care
Jan x