Sharing my story and saying hi

Hi
I’m asking this question because for at least a year now, I’ve had this discomfort in the top side of my thigh going into hip and back area. It been ok walking and bending. But when I lie flat on the bed I get this sore discomfort feeling. Now I’m starting to feel it as I move too. I’ve been putting it down to maybe a hip problem like maybe a worn ligament or something. But now reading your about your bone cancer diagnosis I’ve really worried as I’ve just had breast cancer that was picked up on the 3 year mammogram screening. No lump was felt at all. So I wouldn’t have know about it. So my mind Coukd be doing overtime. But just worrying that coz my leg discomfort was there before my breast cancer was picked up, I’m concerned if maybe like your diagnosis. Really would appreciate some advice from yourself. [quote=“finkyflo82, post:1, topic:118337, full:true”]
Hi, I am new here and wanted to say hi to everyone and share my story. I was diagnosed with secondary breast cancer in october 2023. I have ER + and HER2- breast cancer which has spread into my bones. Before being diagnosed I spent over a year suffering with excruciating hip(left) and lower back pain. The doctor kept telling me it was muscalar and sent me on my way with anti-inflammatories and pain killers. On numerous occasions I called NHS 24 who again told me there was nothing they could do but give me anti-infammatories. I even made a trip to A&E as by this time I couldnt stand, sit or lie down due to the pain. I struggled with going to work as I could barely walk but somehow managed it for a while. I spent the whole of July and August stuck in bed. In August I found a small lump in my left breast. I went straight to the doctors with it and seen a nurse practitioner who was new to the surgery. She was amazing!! She booked me in for emergency xrays, CT scan, breast clinic and blood tests. The xray and bloods came back with abnormalities. I was taken into hopistal and put on immediate bed rest. After more scans and xrays when I got my diagnosis. I spent 5 weeks in hospital. The cancer had spread to my bones causing the hip joint to be completely worn away. The top of the femur on my left leg was hollow and due to snap and I had multiple fractures on my pelvis. I also had compression on my spine and wasnt allowed to sit up further than 35°. Ive had a full hip replacement and pelvis reconstruction since and spent 4 months in a back brace. I started treatment and take exemestane and ribociclib and get the Zolodex injection. I am now able to walk pain free (with crutches for now) but feel so much better!! Treatment is working well for now and everything seems positive. I will go through this with a positive attitude as much as I can.
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Wow, that’s quite a journey. You have been through a lot BEFORE a cancer diagnosis, let alone afterwards.
All the very best to you for your continued positivity and I hope you remain well.
Take care

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Im so sorry to hear this. I can only advise that you speak to your doctor about it. Express your concerns and ask to be referred for an xray or CT scan. Ligament or muscle damage is more likely to cause you bother when you are moving around and should feel better when you are lying down so i would definitely get it checked. It may be something different causing the pain but always better getting it checked for peace of mind. You know your body better than anybody else.

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Best wishes!! You are strong and positive, a good example!

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What a trial for you to have to go through and I’m so sorry that it took so long for anyone to send you for tests. I have learned that you have to push and question and challenge to get anywhere. Well done for persevering and for your positivity.

I was so lucky to have my cancer picked up early from a routine mammogram - it wasn’t detectable from routine examinations by me or at the breast clinic. Fortunately, it had not spread to the lymphatic system and thank goodness for that. I am sending you hugs and healing and hope your recovery continues positively for you. Well done. :pray:t2::heart:

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There seems to be a common thread in medical practice that tends to ‘diagnose’ only the most common reasons for medical issues. This goes for a lot of different kinds of medical issues. Its like just a quick ‘diagnosis’ of superficial symptoms without delving into real causes. This trend is so unfortunate for us patient.

In my case, i have developed post-mastectomy pain syndrome. This is my own diagnosis from researching symptoms i have & comparing to symptoms that may cause. Ive also educated myself about adhesions & neuromas. Ive been told by my breast surgeon that i do have excessive scar tissue. What happens is that severed nerve endings get caught up in this scar tissue, putting pressure on nerv(s) & causes the nerve pain that im experiencing. Only the doctor never connected the dots to this. Post-mastecomy Pain Syndrome goes underdiagnosed for many patients. I took it upon myself & became my own patient advocate & got a referral to a neurologist from my PCP. I now have an appointment this week. Hopefully, i can get a REAL diagnosis & subsequent treatment for the base cause of the nerve pain.

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Thank you for sharing this. I hadn’t heard of this syndrome and I’m sure your post will help many others.

I wish you well and hopefully you will get treatment and relief from the pain soon. :smiling_face_with_three_hearts:

Thank you for your reply & concefn. I am a proponent of researching things & educating my own self, especially about my own health. Google PMPS (Post-Mastectomy Pain Syndrome. Another one is called ‘Iron Bra’ syndrome, which i think is actually the same thing, by the way it is also described.)

I went to neurologist. I received no diagnostic testing appt, as i was hoping for. He explained that imaging wouldnt detect nerves. I had even asked him about possible presence of fibrosis, adhesion, neuroma due to the excessive scar tissue i have, as to reason for this nerve pain… STILL no diagnostic imaging ordered. And he said he couldnt do anything about the nerve pain & that i should ask tmy breast surgeon about it since they know about the specific nerves involved. Well, the reason i came to a neurologist specialist was because it was about NERVE pain!
I was only given another rx for more Gabapentin & got a followup appt by 4 months from now.

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@imchrisann I’m sorry the neurologist wasn’t much help. I think I heard that you can get pain management from the palliative care team, they don’t just deal with end of life. Might be worth speaking to your breast care nurse/team about a referral for pain.

Have you though about talking to a BCN nurse on 0808 800 6000 they may have some advice.

:smiling_face_with_three_hearts:

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@imchrisann I found this. I hope it helps.

Some people benefit from specialist advice on managing pain. You can ask your treatment team, breast care nurse or GP if a referral to an NHS pain clinic or pain management programmes is appropriate.

Thanks for the suggestion & info! I do know about pain management clinics but just hadnt thought of it. I live in U.S. (in Texas near Dallas) & there are those type medical places all over. I’ll just need to check with my insurance for coverage & see where to go. Ive only had 1 day of the new prescription dosage & as far as i can tell, the 900 mg per day dosage seems to help pretty good. I hadnt been taking enough before with the previous prescription. Now at least the dosage is at a better amount to relieve the pain. We’ll see whether or not that holds true. I will be following up with my breast surgeon in June & will be discussing it with her. I was diappointed that the neurologist hadnt been more thorough. I’ll keep positive & that’ll help things.

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