New to forum

Living with secondary breast cancer Supporting each other and sharing experiences
1

Hi,

I am new to this forum, but have been enjoying reading all of the positive stories, thank you. My story is as follows. I am a 52 year old married mum of 5 boys all of whom I breast fed for at least a year. I was diagnosed with primary breast cancer in June 2017, after almost a year of going backwards and forwards to the doctors and a negative mammogram, I finally got a MRI which showed up the cancer. Following numerous biopsies etc etc. I finally ended up having a lumpectomy followed by 15 sessions of radiotherapy and tamoxifen. There was no lymph node involvement. I was thankful as I thought I had got off lightly!

I continued to  religiously checked my breasts, always expecting to find another area of concern, always had constant pain in the lumpectomy sight and under my armpit, but was always assured that the cancer was very unlikely to come back. Fast forward to January 2020, I started to get a few pains in my shoulders but dismissed it as muscular. By March, I was in a lot of pain in my neck, but was assured by the doctors and physios that it was all muscular and to carry on doing the exercises. I kept mentioning the cancer worried that it may be connected. This was always dismissed. I had my annual mammogram again negative. By August, several trips to the doctors and basically being in so much pain that most of my time was spent lying down on my bed in tears, my husband and I went to A&E. I had an x-ray, they thought I had osteoporosis in my cervical spine. The next few weeks were a bit of of a blur but to cut a long story short, I have secondary cancer in my cervical spine, a few other spots on my spine, liver and various other places in my body. What a shock, not only was I broken, I was also very angry that I had not been listened too.

I am on Palbociclb, Letrozole, Zoladex and a myriad of pain killers. I have now just finished my third cycle of Palbo but unfortunately keep having to take an extra week off due to low neutrophils. I have had to give up my job as a sailing instructor an give up my hobbies of sailing and running. ;(  I had my first three month scan just before Christmas and it showed a good reduction in the size of my tumours, especially the one on the liver which my oncologist was most pleased about. 

I am back cycling, using the turbo trainer in the garage. Sport was a big part of my life. so it is nice to be able to do something again. My main issue is that I have to permanently wear a neck brace. My neck is extremely unstable. Unfortunately, they are unable to operate at all because there is nowhere left that is solid enough to fix anything to   The main thing I worry about is my neck as the thought of becoming paraplegic fills me with horror. I have been told that it quite rare to have the cancer where it is in my neck and I can’t find anyone on the forum with a similar story? 

I do feel incredibly blessed with having such a wonderful family who have been so amazing. Anyway, thank you for reading this post. I must confess I was quite nervous about writing it. 

Sending love and virtual hugs to everyone who is out there not only with breast cancer but any type of cancer that has been made that much more difficult due to the Covid crisis.

Amanda xx

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Hi Amanda,

I’m so sorry that you find yourself here, but at the same time it is a very welcoming forum. Some of the ladies on here are so full of knowledge and experience. It’s a great place to connect with others who know exactly how you feel and people who are on the same type of treatment plan as yourself. I have found great comfort here since my mum was diagnosed with extensive bone mets back in September.

Please don’t feel nervous, as it is very brave and courageous to share your story and reach out for support. It sounds as though you’ve been through a lot lately. In terms of being fobbed off from your doctors, that is very bad. I don’t feel there is enough awareness of secondary breast cancer at all. With GP’s/ doctors and patients alike. The spotlight is always on primary breast cancer… feeling for lumps in the breast etc. My mum thought she had sciatica and after four months discovered it was cancer. We was totally unaware of secondary symptoms. We would never have linked lower back pain to breast cancer!!! It seems obvious now! But we wasn’t told. I really don’t know why they continue to do mammograms either after primary, because it seems most secondaries are in the bones, liver and lungs. It makes no sense!!! 

My mum is on a different treatment plan to yourself and although she has extensive mets they are not in her neck, so I cannot offer you any advise on this, but if you have any questions at all or need any support, this is the place to reach out. Don’t be afraid to ask! 

Wishing you all the very best xxx

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Hi Amanda,

Hello and a warm welcome to you. 

It sounds like you unfortunately had quite a battle to get heard and I am truly sorry to hear this. I am adopted and don’t know any family medical history and spent a couple of years or so prior to my eventual diagnosis, via Haematology, convinced that I just had worsening arthritis as my joints were getting more and more stiff and achey. As I understand it, I have microscopic cancer in the bones dotted all around.

For me, it was the onset of worsening and crippling fatigue that had me for the best part of 7 months boomeranging to the GP and back having various blood tests. However, your situation sounds horrendous.

I am on the same treatment plan as you and in common with you, sometimes have an extra week’s break due to low neutrophils too. Some of us just seem more prone to this than others. 

I am sorry to hear about your neck, I don’t have experience of this but hopefully others may be able to give you feedback on their own experience.

It’s great to hear that you have returned to cycling. I am sure it gives you a lot of enjoyment.

Sending you my very best wishes.

xxxxxxxxxxx

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Hi Amanda, 

Thank you for sharing your experience. It is very frustrating to read of your difficulty in getting yourself heard, particularly after a breast cancer diagnosis and one very recent, you would hope that you would be dealt with bearing in mind of this history you have. 

I had my primary diagnosis in 2015, grade 3 stage 2 triple positive, had the book thrown at me so far as treatment. Last April diagnosed with mets to liver, lung and a rib and top of femur. Only symptoms I had of this was an on/off niggle on my left side so it was only the rib that gave the game away, I asked my onc when would the other sites have started complaining, he just said sometimes it’s how it is!

I’m sorry to hear of the extent of this disease on your spine and having to give up what you previously loved to do although your determination has lead you to the cycling, good for you. I always used to be a gym goer which obviously isn’t feasible with the pandemic anyway, but after chemo last year my energy was zapped for ages even afterwards, it ended in august. Lately I have taken up doing pilates, stretches and weights as I’ve lost muscle tone, it always makes me feel better mentally too so I’m a great enthusiast of exercise. 

Great to hear you have fantastic support, definitely makes all the difference. Take care.

Caroline x

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Hi Amanda,

I am so sorry to read of your experience and that you not only find yourself here but also that you are now in the position of having to wear a permanent neck brace.  I wished I could give you a huge hug xxx

Well done for being brave and posting too!  No need to be nervous here, though I know it can seem like a daunting prospect at first.  No need to feel nervous about posting as its a lovely community with lots of warmth, love and support 

My story is very strikingly similar to yours (pain started in neck and shoulders 3 months after finishing primary treatment, GP and Physio also ignored my symptoms for months and told me it was just stress/effects of treatment.  Pain continued to escalate and I landed up in hospital with a collapsed cervical vertebra due to secondary cancer).  I was very lucky they could do surgery to repair/replace what had collapsed.

Have you considered asking for a second opinion about your neck?  I say this because I have come to learn the hard way that some hospitals won’t always offer you what they should, or they try and fob you off.  I ended up lodging a formal complaint to my local hospital trust and suggested that I would report them to the Health Ombudsman if they didn’t do a full and complete investigation into why I was ignored for so long, amongst other things.

I am so glad to hear that you have managed to get back into some physical activity.  I was never an exercise fan before but I really am now!  I recently read a clinical research paper which looked at the benefits of exercise on neutrophils.  The results were very positive, suggesting that neutrophils double and triple within 30 minutes and up to three hours after exercise.  So now I walk everywhere as much as possible and it does seem to be having a great impact as my neuts are almost at “normal” levels despite being on oral chemo.

I am glad to read that you had some positive results after your three monthly scan and a wonderful family who are supporting you.  Its these little wins that really help with adjusting to living life this way! xxx

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Hi Amanda,

I too am sorry that you find yourself here, but this is definitely the best place for help, information and kindness in listening to your situation. I’m on similar drugs to you, just ribociclib is different but the same family and like you a myriad of painkillers. 

I wasn’t listened to either early on when in massive pain, and a negative mammogram,  I had no idea that pain is an indication of cancer. So very sorry about all you’ve been through, but very pleased that you’re back to cycling now.

As you’ve read, these ladies here on this forum are truly remarkable, and their stories heartbreaking, but they’re always ready to give you wise advice, I’ll learning loads from them.

Sending virtual hugs to you too xxxxxx

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Hi Amanda.

sending a huge hug.

I too have recently been diagnosed with secondary breast cancer in my right hip and very worryingly I too struggled to get diagnosed and be taken seriously about the pain I was in! This is a real problem it seems. It appears if blood tests come back ok (as mine did) and X-ray is ok as mine did , pain is put down to age (I’m 54) working from home, poor posture or Arthritis.  I too was sobbing in pain, unable to walk and begging for help and  I too did more damage and caused myself more pain by doing physio ( not to the extent you have) and had to go privately to see orthopaedic consultant (as I was told it was probably 6months waiting time on NHS) when consultant saw me he told me immediately I didn’t have arthritis and needed urgent MRI scan (again paid for privately due to long wait on NHS) This scan showed tumour on my right hip, orthopaedic consultant advised me to get back in touch with my original NHS cancer team as I need CT scan and bone scan. Bone scan was done on NHS but again I couldn’t be offered a CT scan before New Year on NHS (this was 9th December ) so I paid again for CT scan. The delays have been impossible to bear, I felt like I was being left to die with no treatment! 
I had a bone biopsy on 12th January and only this week saw my oncologist, will be getting radiotherapy next week and fulvestrant week after with zometa. I have been told I may be eligible for hip replacement, to get me out of pain, but again this is likely to be private procedure.

I had a long chat with my BCN yesterday and she agreed things hadn’t gone well for me and it was disappointing I had to get scans done privately but said ultimately it would have been same outcome if I had been seen sooner.

I know the NHS is under pressure and I have nothing but admiration for them but everything seems to have taken a back place against Covid and there is simply not enough awareness of secondary breast cancer symptoms !

There seem to be far too many of us on here who struggled to get diagnosed.

x