I am feeling pretty low right now. I was diagnosed in April 2014 with a grade 3 invasive ductal carcinoma, triple negative. Had chemo (FEC T) mastectomy to remove the 7cm tumor, then radiotherapy. No lymph nodes involved.
About 3 months after mastectomy, I was getting pain along the scar, which i had checked out and it was thought to be scar tissue.
Around 6 weeks ago, the pain was getting more severe, my consultant thought still that it is scar tissue, but just to make sure, I was sent for a bone scan - all clear.
The pain is much worse now, and I feel a pressure building up, and where the pain is, I have a burning sensation too. I dont know what to do. Is this ‘normal’? I dont want to be crying wolf or folk thinking I’m just imagining it. The pain is so severe, it wakens me up at night
There is no redness, or dimpling or any other outward sign of anything untoward, I just dont know what to do.
Hi Christina…didn’t want to read and run, as can resonate with those ‘scary’ feelings from time to time. You have done the right thing in getting your pain checked out…is it worth going back again, phoning the helpline here or your BCN for reassurance?
All I can offer is that 3.5 years post end of treatment (G3, WLE, FEC-T, 23 rads and now Anastrozole as very weakly ER+) I have a painful ‘sensation’ around scars and radiation area which can take my breath away. Lots of chunky scar tissue too which is becoming more apparent as radiated breast gets smaller and softer! Team says it is radiation damage to tissues, rib (costo something - not coffee!!) and nerve damage from op. No treatment except painkillers, warm bath and one of those microwaveable heat pads when I need it.
Hi, I had horrendous nerve pain from having 15 lymph nodes removed plus the mastectomy…surgery was in September. I was prescribed Amitriptyline which made me feel anxious and out of control so I stopped taking it and tried aromatherapy. I’m am qualified therapist and have a lot of faith in the therapy. I did a load of research and made up some oil, the base oil is St Johns Wort and is readily available on line, it is a herb that is known for its healing properties and is especially useful for nerve pain. I use a combination of essential oils that work for me. Within a week I went from the constant sickly pain and shooting pains to mild tingling. I massage my arm, shoulder and armpit twice a day. I also use another base oil, calendula which is fantastic for scar tissue. I haven’t started radiotherapy yet but will soon. I will carry on using essential oils throughout my treatment…it definately works for me. I would advise consulting a qualified therapist though as essential oils are very potent and we all react differently to them. But saying that carrier oils can be used undiluted massaged straight onto the skin (st johns sort and calendula). I understand that therapies are offered as part of on-going treatment, its worth investigating speak to your MacMillan nurse or breast surgery nurse, I’m in the north east and luckily the resources are fantastic. Good luck and I hope you find a treatment that works for you. X
Don’t know if you’ve managed to resolve your scar prob yet ? With scar tissue you can sometimes get what are called “adhesions” where the scar tissues sticks to the underlying structures. Could be your prob. Can often be helped (loosened) and alleviated by regularly massaging the immediate area, say twice a day - perhaps after waking and before bed whilst you’re already in an undressed state and can sit on the side of your bed or in the shower. Either try Bev-ann’s oil suggestions or try BIO OIL - can get it in Boots, bit expensive but you don’t need an awful lot on such a small area.
Hope you have some joy with it or whatever else your team says.
Texas - Yeeeeehaaa!! sounds great. Plus you’re going to be a bionic woman after all your replacements !
I was diagnosed with stage three breast cancer last December and positive lymph nodes. I’ve had lumpectomy, mastectomy, chemo and radiotherapy.
I reported to consultant at that time pain in right shoulder blade and pain like a pressure under right rib cage… At the time had bone scan and ct scan that were clear a year on I still have the pain. I mention it every time I see consultant as its scaring and worrying me.
Just had another scan that’s clear… Thank god but like you I still worry… What causes this pain??
It’s really hard trying to move on when your still worrying about a pain.
I went to see my doctor today and feel loved like I’m being neurotic but she understood and after a good cry and lots of reassurance I left feeling much better.
Don’t be scared or worried about crying wolf… Only you know how you feel and I’ve found the GPs and consultants do listen to your fears.
I don’t think I’m imagining my pain which is constant but am going to try my best to move on in a positive way but please if your still worried tell someone never be scared of crying wolf… This is your life x
Things not any better. Had bone scan in October, which was clear. Pain continued to get worse, the plastic surgeon on my MDT so happens to allows me to graze my ponies at his house (long before I was diagnosed with BC), he had a look about 6 weeks ago, he thinks the pain may be caused by nerve damage.
Since he saw it 6 weeks ago, the pain has gotten worse. I feel lije I’m going out of my mind, convinced I have a local recurrence, and specialists telling me nothing to worry about.
The pain is so bad that it stops me doing day to day activities, there is no let up, it is constant has anyone else experienced this? Feeling quite worried
My worst fears have become realised. I have been complaining of pain in mastectomy site since last August. Both breast care team and gp put it down to nerve damage. I felt this was a wrong diagnosis - but accepted it.
On 17th Feb 2016, I was in hospital for a left hip total replacement due to osteoarthritis. On the evening of my op, I was flat on my back and vomited. Chest xray was ordered for next morning incase I had inhaled vomit.
Nothing could prepare me for what I was told. Large shadow on left lung, turned out to be fluid. I had pnumonia. The fluid was drained from my chest - 2.5 litres!!!
Respiratory consultant wasn’t happy and sent me for a CT scan. My breast cancer has recurred locally, AND spread to both lungs. My left lung only inflating 70% and it’s leaning on my heart. I can’t believe I had been at hospital and hp AT LEAST a dozen times since August and thus hadn’t been picked up.
To say I am gutted is a massive understatement!!! I am to see my oncologist this afternoon to see if my life can be prolonged with chemotherapy. I can’t have hormone treatment (triple negative), and I can’t have radiotherapy either.
I am really frightened what will transpire. I am hiding my feelings well from my loved ones to protect them. I just feel totally numb.
I’ve been catching up on how you’re doing. Jeepers Darlin’, I can’t believe it, what a horror for you. HOW ARE YOU NOW?? WHAT’S THE LATEST WITH YOU??
I know we often want to protect the ones we love, but I hope that you are now talking and sharing with all of them how you are feeling. You need all the help and support you can get.
Hi Catokitty, good to see/hear you. How are you doing? I’m seconding your heartfelt love sent to Christina.
Wishing you strength Christina, and sending you a huge, massive, long, warm and loving hug. Can you feel it ?
