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?
I have also posted this in the Younger Women Forums as I’m only 32 but I was thinking I may get more opinions here.
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 time-wise. 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, of course! 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 there
I think Bahons has given a very clear and lucid reply and has summed it up really well - anything that is different and doesnt go away in two weeks -i would actually say 2-4 weeks should be looked at by a doctor. Unfortunaely it is entirely possible to develop secondary cancer with clear nodes- but not as likely. If you have invasive cancer (not cancer in situ) there is always a possibility even if it small. I would say try not to worry too much - what i always said to myself is just make the most of everything so if it comes back (which it did for me ) you will be glad you did that. I know that doesn’t sound incredibly reassuring but it is meant to be.
Cathy
Hi Julie
I would second what the other 2 ladies have said that you should try not to worry but it is difficult. You are probably feeling like this as you get to the end of your ‘safety net’ of treatment. My Mum has BC about 15 yrs ago and has not gone on to develop any further problems. Unfortunately I had BC 5 years ago, WLE, rads (no chemo), Zoladex as very hormone +ve, no node involvement and was diagnosed with bone mets last year. I had no symptoms other than a very occasional ache and was completely surprised (and gutted) when I found out. However I have always said that I have no regrets and lived my life in between the 2 dx’s as I wanted and had a ball! I fully intend to do that now I’ve come out the other side of chemo. Try not to worry about the ‘what ifs’ and get things checked out if anything persists for longer than 2 weeks that you can’t put down to anything else.
Nicky