Hi everyone,
I’m just looking for some reassurance if you are able to help me.
I was diagnosed with grade 2, ER+, HER2+ BC nearly 2 years ago now and I am coming to the end of my treatment (chemo, rads & herceptin, still taking tamoxifen). My lump was small, only 1.7cm. I had a WLE with clear margins and no lymph nodes involved.
My auntie was also diagnosed with BC at the same time but she needed a mastectomy and had involved lymph nodes. She had rads and is now on tablets. Unfortunately there is a chance, although it has not been confirmed yet, that she may have developed secondary cancer, of the liver.
I am now really scared, and worrying myself about whether there are chances of me getting secondaries. Not necessarily cos my auntie may have it, just because I’ve had primary BC and it may progress into something more.
How do you know if other areas of the body have been affected? I was aware of the breast cancer as I found a lump, but how do you know if it has moved elsewhere? I just want to be aware, and know what to look out for so that if ever it does come back (which I hope to god it never does), then it can be dealt with sooner rather than later.
I briefly mentioned it to my mum, she had BC 15 years ago, similar situation, WLE, no lymph nodes involved, ER+ (although not HER2+) and she said she has never had any more problems and the fact that my lymph nodes were clear then I should be safe. Is this right?
Thanking you in advance for any responses.
Julie xx
Hi Julie
I’m no expert, but I think others who know more about this than me have posted here (and hopefully will add fuller, more knowledgeable, replies to your question shortly) that, generally, if you have no lymph node involvement, your chances of getting secondaries are much reduced.
Having said that, I understand that there are cases where those who have had no lymph node involvement have developed secondaries and those who have had node involement have not. It was once desribed to me as a ‘fickle’ disease and I feel that’s very true.
How do you know if it has spread? I was was told by my last onc to report at once anything that did not clear up in two weeks and an investigation would follow.
Policy in the UK seems to be not to scan unless a patient presents with symptoms. One reason given for this is that they are only a ‘snapshot’ of your body on a particular day and have limited validity. Another is that they do not pick up small anomalies very well. I don’t think I’m explaining this very lucidly and I know there others on here who can do it better, but I hope this clarifies things a little.
It’s easy to say ‘try not to worry’ - almost impossible to do! But constantly living in a state of heightened anxiety is exhausting and will really detract from your quality of life, so it’s worth a go.
I’m sure you’ll get some more detailed replies soon. In the meantime…
X
S
Hi,
I really wanted to reply although i dont have any really good advice. I went throught exactly the same anxietys and sometimes i still do. I used to call my BC nurse every day because i thought that my cancer had spread to a certain part of my body.
When 1st diagnosed i was 22, stage 1 9mm and no lymph node involvement and didnt need chemo just tamoxifen and zoladex.
I begged my onc for a full body scan ct scan mri and bone scan and she said that if i wanted the scans that badly then she would have reffered me, but scans can show things that arnt nessiseraly cancer and therefor she didnt want me to put myself under more strain of the anticipation of the results.
The chances of the cancer is so minimal and also sound like yours is too. All the advise that i can really offer is trust in your treatment and try not to think that every ache or slight pain is cancer, its hard, really hard.
I found myself going on the internet and looking at every secondary cancer and symptoms and at the end i thought i had liver, bone, brain and lung secondarys oh and also bowel cancer!!! looking back i wish that i hadnt have known as i just scared myself to the point that i was sick with worry!
My BC nurse and consultant had a word with me and gave me a good telling off and was going to go councelling but i pulled myself out of it before i needed to go!
Keep your chin up and try and stay posotive! It might never happen!
Emily
xxxx
Hi Julie
I was had breast cancer in 1999 aged 27 and was cancer free for 8 years I then got flu like symptons and a cough which didn’t go away after about 2 weeks went to the doc and to cut a long story short was told my breast cancer had spread to my lung.
I think that if you have not been feeling well for 2 weeks or more, whatever it is, you should get it checked out at the docs. I had no idea it was my cancer back just thought it was flu. You never know, better to be safe than sorry.