Bone Mets with NO lymph node involvelment on BC diagnosis

Hi All,

I was dx with grade 3 ductal carcinoma in January 07 at the ripe old age of 28.
I had NO lymph nodes infected, had a lumpectomy, rads and am now on Tamoxifen.

I am a tad worried as over the last 4 - 6 weeks I have had quite a bad sore spot at the base of my spine. I have had a bone scan on this part of my spine as to which hot spots showed up so I had another scan but no cancer was found. The onc basically said I had a slight curve in my spine and as i was quite slim that part didn’t have much protection from every day wear and tear.
The pain I have now is almost constant and I have started taking pain killers when its really bad. It really hurts when I stand up from sitting in cars at tables etc and it takes me a while to get going not forgetting I look like a duck when I try and walk ( after sitting ).

Is it possible to get bone mets even if your lymph nodes were clear ?

The thing is I don’t know what to do. I am trying so hard to move on and to not think every ache and pain is cancer but am struggling to decide if its me being paronoid of if I should see a doc.

Advice would be much appreciated,

Love to you all,

mandy :heart:

Hi Mandy

I’m sorry to hear that you’ve been having pain in your spine – you didn’t say when you had your bone scan, so it might be time for another one. I was diagnosed with bone (and liver) mets over 5 years ago, and do contact my onc team when/if I have any new pain that lasts for more than a couple of weeks. Do you have a local breast care nurse that you could speak to about your current worries? Or you might want to ring BCC’s helpline for some information & support. As I had some node involvement at my primary BC dx in 1997, I don’t know enough about BC mets and node status, but I hope your pain turns out to be (a) temporary, and (b) not mets.
Marilyn x

Hi Mandy

It is possible to get mets without initial lymph node involvement although it is obviously much less likely than if you have had substantial spread to the lymph nodes.

I have liver mets not bone mets so don’t know at all whether what you are describing sounds like (or not like) bone mets. Think whatever, it is worth getting it checked out further otherwise you are just going to go on worrying. Do you still have contact with your BC nurse? If so could you give her a ring? Think it might be worth contacting the oncology team direct so that they can advise whether you should have a scan etc.

Really hope that it isn’t mets and that the pain also is sorted quickly.

Kay x

Hi Mandy

I was first diagnosed with BC in 2003 with a small, grade 3 tumour and no node involvement. Three years later I had a local recurrence and then had a bone scan which showed I had a large bone secondary on my pelvis. My Oncologist at the time said that this ‘would have been there since day one’, although my current Oncologist said that it was impossible to know that for sure as I didn’t have a bone scan in 2003.

I remember that after my initial diagnosis I was so paranoid about getting secondaries that I had all manner of aches and pains which I would worry myself silly about until I would ring my Breast Cancer Nurse in a panic, she would then re-assure me by saying things like “you can’t get bone cancer in your knees” and then the mystery pain would disappear overnight, proving that it was all in my mind. I am not saying that this is all in your mind, but I suspect it is unlikely (although not impossible) that you have bone mets given the results of your scan, and that hopefully this pain will subside soon. Perhaps you have pulled a muscle or something, but you will probably focus on it because of your fears.

Best wishes
Linda

Hi Mandy,

I’m not sure if this is helpful or not, but anyway, I had DCIS prior to my wle and radiotherapy I was scanned to ensure there were no signs of cancer anywhere else - there was none.

Two years later I had a local recurrence and spread to my spine, at the time they did not think the spine needed immediate treatment other that chemotherapy. I had only had my first chemo when I experienced spinal chord compression which needed an immediate operation. This manifested itself initally in permanent coldness in my right foot, not knowing what on earth that was, I did feel a little ‘odd’ phoning the Dr. to report this especially so soon after a scan. If I hadn’t I would have almost certainly been in deep trouble.

Why not consult your Dr. again if you are still experiencing symptoms or you are not reassured - after all what have you got to lose.

I hope it all works out.

I suppose what I am trying to say is , with this disease, anything seems to be possible. So I would advise that instead of continueing to worry get it checked out

Hi Mandy
I have developed bone mets after no node involvement so, yes, it is possible. If you are in as much pain as you say I would get it checked out or even the bone scan re-read - things have been known to be missed. If it is nothing then that’s great and you can stop worrying, however if it is BC related then the sooner the better it’s dealt with. I had no pain whatsoever from my (hip) bone mets so was gobsmacked when a bone scan showed them up (following on from a local recurrence).
Nicky x

I have read on more than one occasion that ‘no node involvement’ actually only means what they tell us it means for two out of three cases. And yes I was one of the unlucky one in three too.

Don’t want to worry you, but I have another yes for you, though it wasn’t for me, but my friend. She had the ‘best possible prognosis’ with a small lump found early and no nodes.

Sadly it spread to her bones and lungs, we lost her last summer.

So get it checked out asap.

Irene