I think NED is leaving me...
 

I am Stage 1V from the get go, 16 weeks of Abraxane and Herceptin took me to NED in Sept 2011. Scans yesterday showed all clear in bones, liver lungs, brain, but showed an enlarged auxillary node. I have not had surgery or radiation. My onc says a node over 10mm is considered abnormal, mine was 19mm. My onc wants to wait 3 weeks and have an ultrasound to see if it has grown. There is a very small possibility that it is due to something other than cancer, but is most likely cancer. Three weeks is going to be a long wait, and I do love Neddy so.
Anyone have any thoughts/suggestions? Thanks for listening

Dawn

Re: I think NED is leaving me...
 

Hi Dawn ! Sorry to hear about the bump! As you see NED comes and goes. Even it leaves us for a vacation, it does not mean NED won't come back. Many ladies here have experienced the same. I think the great news is that you are clear elsewhere except for the lymph nodes. I have also had a recurrence while on herceptin. I am currently on xeloda and tykerb. I agree 3 weeks are a long wait. You may wanna check with the doctor whether the treatment would change in case of cancer in the lymh nodes. If you will be on the same treatment, it does not matter. But maybe he is willing to try a new drug for you?

Re: I think NED is leaving me...
 

The waiting is the hardest part. Gods blessings to you sweet woman. I am praying for you and your family.

Re: I think NED is leaving me...
 

Waiting is hard but I also agree 3 weeks seems too long me. it can be biopsie now anyway why wait? That is my opinion. You are a stage 4 and therefore unfortunatly you have to think that you are so much more at risk that somone who never had cancer, why wait.

I would claim mental anguish go and say that you are unable to sleep until you know. They did that to me and I waited in 2010 a couple of week until another appear! why wait!! I was so annoyed with them after. What I wish I had done say that I would not leave the office and stay there until they see me. What I don't understand is that if you had a ultrasound to show that it is 19mm why did they not stick a needle there and then?

Re: I think NED is leaving me...
 

Perhaps you can ask the doctor to try to treat it with Herceptin if it's still inconclusive in three weeks? I remember one of the members once reported that because the 'enlarged node' responded to the treatment, thus was confirmed to be an affected node.

There are other causes for a lymph node to be enlarged - such as an infection.

I always experienced unexplained weight loss when I was having cancer. I'm sure your doctor had taken into consideration of other factors such as your blood/lab reports.

Re: I think NED is leaving me...
 

Thanks ladies for your replies.
Jackie I am on Herceptin anyway, wouldn't that mean that Herceptin has failed for me? Do people continue with it anyway in case it is controlling the size of the tumour? I am scared that it may spread in the three weeks my onc wants to wait. She also mentioned that my teatment may not change. If it more cancer, I would have to restart chemo, wouldnt I? If it has appeared whilst just on Herceptin, wouldn't I need to get straight it onto to contain spread?

Thank you all for listening and responding

Dawn xx

Re: I think NED is leaving me...
 

Dawny,

You and I are kind of like twins in terms of time of diagnosis and results.

If I were you I'd ask for a biopsy. I don't see any reason for a "wait and see" approach. And if it's just one little ol' lymph node (OK, a big one) I don't see why they don't zap it with something--cryoablation or RFA.

I haven't been through this yet, but I always kind of suspect that we Stage IV folks just don't inspire much sense of urgency. Since it's "incurable" and they only think in terms of "palliative" care for us, three weeks is no big deal. To them, maybe. But obviously not to you.

Lots of our sisters on this forum have had NED wander off and then come back. It's disappointing to have a setback, but it's "information." Maybe you do need to do chemo again. Maybe you can get into a TDM-1 or pertuzumab trial. Keep asking questions until you get the answers you need.