Hi. I suspect I have mets to bone

Anonymous

I should introduce myself as a new member before offloading to you all. I had my first diagnosis back in 2007 and I'm afraid I was a really bad patient. I live in Spain but am English and although I speak Spanish, during treatment I used the language barrier as an excuse to 'zone out' and pretend nothing was happening.

Consequently I wriggled out of chemotherapy which my surgeon though ridiculous but oncologist said was probably ok and just went to rads. on completion of that torture, my young female oncologist told me i was to have my menopause induced at the age of 42 after losing most of what made me feel female to the surgeon's scalpel already!

Anyhow, i am still waiting for the menopause despite just hitting 50, regular as clockwork and extremely heavy

I never went back for another consultation. I picked up my prescription for Tamoxifen and took it for 18 months before chucking them away because 'i didn't like the side effects'. absolutely hopeless! it would be so bad if not for the fact I have two children who were young then. They are now teenagers and live with their father in the UK

For the last couple of months, I have had increasing pain in my neck, back and left shoulder and arm. sometimes it feels like the pain is 'travelling' in that region of my body and although it's more of a constant dull ache which crescendo's when i put on a jacket or reach for something without thinking, it's definitely not the pulled muscle i've been kidding myself it is for this time.

For this reason, I have joined this forum as part of my mission to pull my head out of the sand. i had no idea breast cancer could return to the bone as i didn't listen to anything anyone told me! i was simply looking into frozen shoulder on dear old google and in all the results there was a mention of BC....that's what kinda freaked me out really.

My circumstances in Spain are so complicated and the medical system here is.......well, Spanish (bless them).

I guess I want to know if a simple x-ray can detect anything that would prompt further investigation if necessary or if i face being told it's everything else but the possibility of mets.

I also wouldn't mind knowing what kind of time commitment is involved in treatment generally...i know everyone is different..i need a reality check and a big kick up the butt here!

I really thought that if your mind didn't know it, you could somehow avoid getting cancer again....ridiculous for a woman of my age and education. i also had no idea stage four was incurable. i have learned much from this forum already.

great to be among cancer warriers!!

blainejennifer

A simple x-ray can pick up signs of bone shenanigans, but it can't really tell the difference between arthritis and bone mets. This I know from experience. I had a rib cage full of lesions, but the x-ray only picked up some lytic lesions in my vertebrae.

You do need to be fully imaged. The radioactive contrast used in a PET scan can tell what is going on in any bone "spots", and how intense that activity is. Once that is assessed, you can begin treatment, if you need to.

Treatment varies from patient to patient, but it usually starts with being put on an anti-hormonal in the case of ER+ disease, which I'll bet you had as you were offered Tamoxifen. And, they'll usually throw in infusions of a bone strengthening drug (Zometa or Xgeva). So, you'd need to go in for infusions once a month or so.

Look at it this way - you'd just might have wicked arthritis, but you need to find out. Mets are Very Treatable. Can you take a holiday in the UK for some medical oversight, and then go back to Spain?

springwatch

Hello roxi jay,

There is another forum for people like yourself that are concerned about a recurrence.

https://community.breastcancer.org/forum/105

However, the only way you are going to get an answer to any of your questions or find out if you do indeed have bone mets is to make an appointment to see your doctor.

I hope your concerns are unfounded.

ibcmets

Roxi,

You really need to keep on top of this. I see too many early stage cancer patients with recurrences. I had frozen shoulder after chemo. It was more painful than anything I went through. The pain radiates down your arm and you will not be able to raise your arm over your head or behind your back. The cartiledge is stuck from the shoulder. I went through a year of physical therapy to release it.

Get yourself checked and you may need an AI or be put back on tamoxafin. I'm the type who wants to know exactly what's going on. By checking you can may be able to prevent metastasizing to any other spots in your body.

Terri

SandyAust

Hello Roxy,

I am sorry you are going through this. Hopefully the moderators will move your post to the correct forum.

Speaking from personal experience and not as a medical practitioner, your symptoms sound like cervical radiculopathy. This benign but extremely painful condition is caused by a compressed nerve root in your neck. It can refer pain from your neck to your shoulder and down your arm. It can also cause pain in your back between your shoulder blade and spine (rhomboid muscle).

This condition is relatively common and your GP ( primary care doctor) should recognise the symptoms and refer you to a neurosurgeon for a steroid shot near the nerve and an MRI. In some cases surgery may be required if the symptoms don't resolve.

I obviously cannot say for sure this is what is causing your pain but the symptoms you are experiencing are classic indicators. I am a long way out from breast cancer now, and only visit here tocheck on a friend but I felt compelled to comment on your post.

Best wishes

Sandy

Moderators

Topic moved to the Not Diagnosed With a Recurrence or Metastases but Concerned forum! Thank you ladies for the heads up!

roxi_jay, welcome to Breastcancer.org! We're sorry for the worry that brings you here, but we're glad you found us. Besides the information and wise advise that members gave you here, the article Recurrent and Metastatic Breast Cancer may help you understand what a recurrence or metastasis means, how to diagnose it and what to do next, and also deal with those fears.

Please let us know how you're doing!

Best wishes,

The Mods

Anonymous

wow....thank you so much for your responses.

i am scheduling some tests in the UK for the beginning of next year as I have an old school friend who is now head of radiography at the Royal Marsden, one of Europe's finest cancer specialist hospitals (woo!!).

In the meantime, my shoulder pain has decreased significantly over the weekend although I still 'catch' it although that's the case for my entire skeleton these days!! oh the joys of getting old.......albeit a better option than the alternative.

There is one thing that has continued to bother me and I failed to mention in my first post....denial again I'm afraid. That is the very dry and persistent cough I've had for almost a year now. I always had a smoker's cough which was very chesty and congested sounding and this led to me almost giving up smoking entirely (I didn't want to switch to vaping and so just cut down the cigarettes to no more than 10 a day....which I know is still too much. However, despite being a smoker when I had BC surgery, I was told I had great lung capacity.

anyhow, the smoker's cough has gone but has been replaced with a cough that usually starts when I take a sharp breath...something catches in my throat and starts a coughing fit. Sometimes the fits can go on for hours and leave me feeling very unwell. They are particularly bad at night time which is probably due to not having my head raised which I try to do as much as possible. I've had neck and shoulder pain - at points chronic - which I've attributed to violent coughing fits.

I wondered if it may be something to do with the air-conditioning at work but unfortunately, the cough is there whether I'm in the office or not. I have at least one coughing fit a day and up until recently, just thought it would be one of those things.

i recognise that I must sound like a mess of paranoia but it really has only been recently that I've acknowledged breast cancer can even return...let alone to another part of the body.

give me some sand and I'll stick my head in it every time.

I have a consultation tomorrow and am hoping to sort out a chest x-ray while I'm in Spain and then I'll wait til the UK to get my bones looked at.

scarey thing secondary cancer.....lots of vocab to be fearful of....palliative care...incurable...

Thank you for your time everyone

WinningSoFar

Sounds like you have denial down to a science. But that's not all bad--denial helps us deal with our fear. If you just always have one doctor's appointment scheduled, you can go into denial in between appointments. I'm not being sarcastic, so please don't misunderstand. I'm a believer in using our faults to our advantage.

Anonymous

I completely agree in making positives out of negatives. when I was first diagnosed I firmly believed that if I ignored it, it would lose it's grip on me.

whereas i do believe strongly in mind over matter. ..denial is taking things a tad too far.

WinningSoFar

You and me both, roxi.