Hi everyone,
I am hopeful for some advice please? I was diagnosed in June 2024 with an early stage (2cm) Grade 3 Triple Negative Ductal Carcinoma, which was successfully treated with chemo (EC first, then Paclitaxil and Carboplatin), wide local exsision and a few lymph nodes to be sure, and finally radiotherapy (10 days).
I had a complete pathological response with no evidence the cancer ever reached my lymph nodes.I know this means the chances of it spreading are very slim, but I have developed some worrying symptoms that have been steadily increasing over the last few months I'm particular. For further context, I am also diagnosed with Fibromyalgia, so I had been putting it down to that initially.
However, I'm at the point now where it's becoming concerning. It started with the back of my shoulder feeling like it's kind of cramping/aching but I can't stretch it out at all, but that's developed into a nagging achey feeling. Then my pelvis and right hip in particular are becoming increasingly painful with that similar aching. Luckily I mentioned the pain in my shoulder to the breast care nurse at my first annual review/appointment, it just wasn't as uncomfortable as it now. Thankfully they have referred me for a full body bone scan, which is coming up in a couple of weeks. In addition to this I have been having gastrointestinal type pain up under my ribs mainly on the right, but also left side recently. Again, this isn't out of the ordinary as I have IBS, but it is worse than normal.
However, then reason I have reached out is because in the last couple of weeks I've had 3 episodes of very painful muscle spasms which start on the right side of my chest and then move to my left, when I tried to breath in. Then during the most recent episode while I was holding my side in pain, I felt a small palpable lump on my right flank/side.
So the next day I went to my GP to explain what has been happening and showed them the lump. They weren't concerned and just said it's a fatty lump or small cyst, and that my pain and fatigue/jelly legs is just my fibromyalgia, and finally that the upcoming bone scan will cover everything anyway.
I fully understand that the risk is very low, and I have never questioned my GP before, but understandably I am concerned that waiting might not be the right thing to do. So, would it be appropriate to reach out to the oncologists secretary, or should I contact the Breast Care team, or would the bone scan be the place to start anyway. Unfortunately, fatigue wasn't as bad and the jelly legs feeling I keep getting wasn't happening like this at the time and I hadn't found the lump on my side either, when I had the last appointment with the Breast care nurse.
I am so sorry for how long this essay turned into, thank you to anyone who has taken the time to read it, I would be extremely grateful for anyone's input. To anyone who may be at the very beginning of their journey, you are and will be stronger than you ever could have imagined!!
Stay positive,
Pomples
Hi Pomples and welcome to Macmillan and the general chat forum.
I think it’s very natural to fear a recurrence after a cancer diagnosis, and our minds can rush to all sorts of unwelcome thoughts when we have any sort of new pain that worries us.
You've mentioned this to your beast care nurse, so it’s good that you have a bone scan coming up soon. However, as you didn’t have the lump at the time this was arranged, I would suggest that you contact your breast care nurse to let them know.
We have specific cancer forums for support and I’d like to recommend you take a look at these and post there to introduce yourself if you’d like to. These are links to two groups which should be helpful for you
Triple Negative Breast Cancer Forum
You can join both of these and be able to connect with others who have a breast cancer diagnosis, to widen the number of members who will see your post and be able to reply if they’ve had similar experiences.
Take care and let us know how you get on.
Sarah xx
Thank you so much for this, I will call them tomorrow. I will also join the groups you've shared now and when I'm able to, I will come over and say hi.
I'm really thankful I mentioned it them at the time because I have just been putting stuff down to the fibromyalgia, which it almost certainly is... But I suppose one of my biggest fears is it just being attributed to that, when I I should've been more vigilant.
This past few weeks, it has kind of dawned on me that I will always be anxious about any new thing. But it definitely helps to know that this is a completely normal response...I just need to learn how to find the balance between vigilance and over worrying...I will get there eventually, I'm sure!
Thanks again for your reply Sarah, I really appreciate it.
Rachel 
️
Hi Pomples
Yes, join the groups and have a look around until you feel comfortable enough to introduce yourself-it’s fine if you don’t feel quite ready to do that yet.
It must be difficult living with fibromyalgia-I have a couple of friends who struggle daily with it and both have quite a significant amount of pain. But don’t blame yourself for not being vigilant enough when you have this condition which already causes you pain.
I’ve had a couple of times over the years when I’ve feared my cancer may have returned, so I really do understand the fear it gives. My cancer recurred 9 months after treatment finished so it heightened my fear it could have happened again.
One time I had to be persuaded to go to hospital, and it turned out it wasn’t my cancer back, but gallstones blocking my bile duct, which was sorted out by a couple of procedures and eventually surgery to get my gallbladder out. No sign of cancer when it was removed.
Then I had constant very bad pain in my hip and feared it had spread to my bones, but multiple ex rays showed it was severe osteoarthritis and again no sign of cancer.
I’m more than 7 years from my original cancer diagnosis and 6 years beyond massive cancer surgery when it came back, and it gets easier as time goes on not to imagine everything is cancer. It can be hard to control that fear sometimes!
But I’ve learned to live with it not being at the front of my mind, and to appreciate that I am still here and feeling well. I have a generally positive mindset, and doctors have told me that’s important in treatment and recovery-positive patients tend to do better so I’ve tried always to remember that.
You’re going to get checked out, so that’s the first step-try not to worry too much for now if you can.
Sarah xx
I have metastatic TNBC that spread through the blood rather than lymph nodes, so I fully understand your anxiety. It’s always worth getting things checked out. You are back in the system with your bone scan and it could be worth pressing them for a CT scan to check your organs too, even if the bone scan throws up nothing of note. From what I understand, spread to the bones is less likely with TNBC than it is with an oestrogen fed cancer, so there’s every likelihood that what’s going on is related to your other health issues combined with the anxiety this must be causing.
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Hi there,
Thank you so much for responding, I'm so sorry to hear that yours has spread, I hope that your treatment is going as well, and that it is responding!
I have my next appointment with my oncologist in April, so I will discuss it with them then.
Fingers crossed its just me putting 2 and 2 together and ending up with 100!! Lol
Thank you again for taking the time to reply!
Best wishes,
Pomples
Thank you. I have been in remission for the last couple of years or so thanks to my earlier treatment with immunotherapy. I am regularly scanned but don’t currently need treatment.
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I’ve had anxiety for a few years and counselling definitely helped although it wasn’t health anxiety. I continue with medication to help, and it does.
Hope it will help you too when you can see someone.
Sarah xx
