Sharing my story and saying hi

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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Hi @finkyflo82

I’m so sorry to hear your story but glad you have shared. Sharing with others can help with our own understanding.

Please correct me if I’m wrong in my understanding, you have just had a secondary diagnosis and never had a primary. If so it’s quite worrying that your symptoms have been dismissed as other things. So many of us with primary BC worry about secondary disease and that there is very little follow up or testing.

BCN have a forum area for those with secondary and a private chat area.

  • Secondary breast cancer is full of uncertainties. But you can count onLiving with Secondary Breast Cancer to be there for you, no matter what. You’ll be able to talk, listen and learn with people who understand the challenges that secondary breast cancer brings. Our groups are open to people with a secondary diagnosis. Monthly sessions, facilitated by a therapist, are held in a variety of locations across the UK and online. Find a group. And if you are 45 or under? Our Younger Women with Secondaries Together events provide information and support
  • LiveChat: Open to people with a secondary diagnosis. A private chat room where you can talk to others in a similar situation

I’m pleased treatment is working well :smiling_face_with_three_hearts:

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Yes thats correct. I’ve never had a primary diagnosis. All my symptoms were in my hip and lower back. There wasnt any visible signs in my breast until just before I got my diagnosis. I think thats why I wanted to share my story. Thank you for your kind words. I’ll definitely join the forum, thanks for letting me.know about it.

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You’re very welcome.

Your story will help so many others. :smiling_face_with_three_hearts:

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Welcome to the forum @finkyflo82

I am so sorry to hear what you have been through, thank you for sharing your story. The forum is a very kind place and I hope you find the support you are looking for.

As @naughty_boob mentioned, we have a private group for people with secondary breast cancer which you may find useful.

We’re thinking of you,
Lucy

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Hi @finkyflo82 - gosh what a story, you really have been through the mill but how good to see you are being so positive. Apart from a recent bc diagnosis I have also had two hips replaced (9 years ago and the other one 19 years ago). I can understand completely the frustration you must have felt when you were told it was muscular. Mine was similar (although for me due to osteoarthritis) - I was told my muscles must be weak (despite having done yoga for 30 years). I too was in awful pain and found eventually that my femur had worn into my hip socket, so no wonder. Just highlights how strong you need to be mentally to deal with it which is hard when you’re in pain. I do admire how you have got through this (I know you had no option!) and happy things are improving for you. Take care :two_hearts:

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Hi finkyflo82….what an awful time you’ve had and it should have been so much easier. When I hear stories like your, and there are plenty, I get so furious. A woman in excruciating pain being fobbed off with antiinflammatories is outrageous. Why does care vary so much in this country? I’m in the South West and after 3 weeks limping due to some pain in right hip finally went to see my doctor. I thought it may be sciatica but she didn’t agree and sent me for an X-ray. Then I went to Menorca for a week walking every day with a hip and femur that could have snapped easily! Got home, message to say call surgery, get to hospital asap. From then i was cared for so well ….scans, biopsy then hip replacement. My primary breast cancer was 11 years ago so it must have been an even worse shock for you. So glad you are feeling better. I was at my hospital today to collect Ribociclib and have my injection for my 19th cycle and life is good. Mini break coming up this eeekend and then holiday in Majorca.

You have been through the mill but you will do well.
X

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I think you are a star! I take my hat off to you for your positive attitude, and bravery - that’s one heck of a journey and some folk wouldn’t be able to handle it in the way you have. I truly wish you all the best.

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Hi @finkyflo82, i read your story and it just resonated so much with me that i decided to post my own story. I had been toying with posting for a while but always felt kind of embarrased about talking about myself. You gave me the courage to write it down and get it out of my system. I hope you get the care you deserve and the lovely peeps on here have always got plenty of advice and a sympathetic ear.

Hugs
LexiDreadful
X

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Hi Flinkyflo. At first I thought your story sounded much like my own as I was told it was sciatica but then was told after and X-ray that I had cancer in my bones - but that wasn’t causing my pain, in fact that was all forgotten in the panic that followed.

What an awful time you’ve had and glad that you’ve now been diagnosed, put back together, out of pain, your treatment is going well and your attitude is so positive. Thank goodness for that nurse practitioner.

Good luck. x

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Thank you all so much for your kind words. It has felt really good to share my story with people who understand. Everyone has an inspiring story to tell and its great to know that I’m not alone in this. I believe this forum is going to help me along in my journey and will make it a bit easier. I hope that you all get the care and treatment needed. Thank you :slight_smile:

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Wow :hushed:, what a journey! I admire how you have advocated for yourself and your positive attitude! Thanks for sharing your experience.

I didn’t know secondary breast cancer was the same as metastatic breast disease. Would that be stage 4 or how is then named? Sorry for my questions, which you don’t have to reply to is you don’t wish to.

After my chemos (EC + Taxol) and radiotherapies (5 high dosed) I did onco-rehabilitation (orientations and physical exercises). Immediately during the assessment session for the excel use sessions I had severe left hip and I felt it in my lower back. As I had a lowe back history issue I thought I had done a bad movement. I did have a bone density test before Zometa but bones came out fine, although I don’t know if that test can see for other issues other than the density.

Two and a half years have passed and I still have the hip pain which connects with my lower back. Dr keeps saying it’s my lower back reflecting there. Some years ago I had done some kinesitherapy so I should do those exercises and see if it improves and, if not, push for further check up. Next month I have my 6th and last Zometa. Half way through Letrozole.

Keep up your great positive attitude and best wishes with your treatments.

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Secondary and metastatic are the same thing. I was under the impression that it was stage 4 however when I got my official diagnosis I was told I had stage 2 so I’m not exactly sure how it works. I was just relived that it was a better outcome than we had thought even though it is secondary and my hip/spine were in a bad way. Im also on Zometa and get it every 3months. Thank you very much for your kind words. I would definitely push for the further examinations. Even if it is for piece of mind. I wish you well and hope your treatments work the way you hope.

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I am so happy that it was stage 2 and not stage 4!:pray:t3: Surely you get Zometa every 3 months due to the fact the secondary breast cancer had spread to your bones. I hope you are not feeling too many secondary effects from the Zometa. A friend had recommensed to take Paracetamol before the treatment, not sure if the day before or the day itself. My memory has been affected by Letrozole. Best wishes and keep us posted.:hugs:

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I too had secondaries discovered before my primary. The secondary was only discovered because I was receiving regular monitoring for spinal stenosis and, even then, only because I insisted on a biopsy. My consultant had reassured me the ‘hole’ in my vertebra was not cancer. He had been advised, by the radiologist, to monitor for 6 months. The biopsy results gave no indication as to the primary and, coincidentally, I had my regular mammogram, which was clear.
I had a CT/PET scan, full spine MRI, cystoscope to rule out bladder involvement and bloods. No other mets were found. Finally, a breast MRI and TOMO (3D mammogram) revealed a 1cm tumour in my right breast and subsequent biopsy confirmed grade 3 invasive ductal carcinoma (ER+ PR+ HER2-).
Radiotherapy to the spinal tumour has arrested its growth and the Ribocyclib/Leterozol is working: the size of my breast tumour, at my last CT, had shrunk from 1cm to 3mm.
After adjusting dosage of ribocyclib (initially wiping out my white cells) I now feel well and am able to maintain daily exercise and routine activities. I allow myself ‘long sits’ when I need them and eat as healthily as I can. By cutting out alcohol and ‘heavy carbs’ I have been able to lose a little weight and my overall outlook is very positive. Looking forward to holidays and gardening again.

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Hi @poppy6

Thank you for sharing, your story will help others.

I wish you well in your treatment. :smiling_face_with_three_hearts:

I am deeply impressed by your courage and confidence in sharing your experience, rather than feeling sad or sorry about your condition. Your story will undoubtedly inspire and empower others who may be facing similar situations. Please accept my heartfelt best wishes, and take good care of yourself.
Sincerely,
Vinod.

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This scares me
I was sent to oncology ward with back pain & had ECG then chest X-ray :woman_shrugging: Told back was just muscular- no back X-ray or other scans
It’s not getting better.

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I’m so sorry to hear this. Such a long recovery for you when it coukd of been so easier if they had listened to you.
Happy to hear you’re doing well. Can I ask you did they remove lymph nodes. All the best for the going forward. X

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No lymph nodes removed. I havent needed any surgery for the actual bc. Thank you

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