Ned?

Missyw · 03-14-2007, 09:33 AM

Hi everyone,

I have been "lurking" since my diagnosis in January of 06. I am amazed and comforted by your courage. I am hoping you can provide just a bit more.

I could use your wisdom and insight about my situation. After my initial diagnosis 1/06, I was sent for the usual set of scans. All allegedly came back "clean". Later in trying to qualify for a bone metastasis prevention trial I was sent for another routine abdominal CT. This led to an abdominal MRI in March 06. (I had just finished A/C.) The oncologist explained I had a "spot" on my liver. It was apparently seen on the original CT scan, but no one raised it as an issue. The "spot" was allegedly too small to biopsy. The "spot" remained on a follow-up MRI in May of 06. (I was now three weeks into Herceptin and Taxol) No change was ever seen to the "spot". My oncologist explained it was nothing to worry about as long as it remained and there was no change.

In my August 06 scan the "spot" had disappeared. The oncologist explained I was now stage IV and I would have to be on Herceptin for life. She is sure the "spot" was a metastasis and although I was now NED, my time is limited. I can't seem to get my footing. I am in the U of W vaccine study, but I am feeling very hopeless. Has anyone ever heard of a liver "spot" that wasn't a metastasis? How long will the Herceptin keep my going if it was a metastasis? I draw so much hope from reading positive stories. Is there a story similar to mine with a better outcome? Just hoping.

question that I wanted to share with you, the real cancer experts.

Mary Anne in TX · 03-14-2007, 11:00 AM

Hi Missy!

Your answers will come soon! This group is filled with those with all kinds of circumstances and successes. Take one deep breath and believe for just a bit more. God bless and much love, mary anne

StephN · 03-14-2007, 11:54 AM

Missy -

A quick reply. My "story" is at the end of my post. I had too many spots to count plus large ones in my liver. That was 5 years ago. I have been NED and my liver has completely regenerated itself to where there is not even a bit of scar showing on the scans.

Herceptin has been a good drug at keeping my cancer from flaring up into active disease.

Please take heart. You had one little spot and it is GONE!

saleboat · 03-14-2007, 12:32 PM

Hi Missy,

I imagine this must be very stressful, and I wish I had specific advice for you. However, I can only say that it seems very strange that a Doctor would declare you Stage IV, all based on a spot that is no longer there. I would look for another opinion on your situation.

Good luck with everything,
Jen

DEBBIE S · 03-14-2007, 01:54 PM

Missy, Hi.... I too was originally diag. stage 4 ... my bc had spread to my liver... the spot on my liver was very small.. something like 1cm but it was biopsied and confirmed .. without knowing this my onc would not have been able to decide if my treatment regiment was to be surgery first then chemo or chemo first... Normally in stage 4 you start chemo immediately... my spot did disappear during my first regiment.. but as you can see from the info below I did have a reoccurrence in the same breast within 3 months ... But after many treatments I am happy to say I am only on Hercp and responding, whereas before it appeared I could ony do Hercp with chemo to keep my scans clear... Gather all the info you can and then sit down with your onc and go over each and every question and make sure you are given an answer you understand... Once you digest this info continue to ask questions if you feel you have not been given sufficent answers... It helps to have someone else accompany you to these appts who also understands your situation and can also have input...There are many of us who are stage 4 and living productive lives and try not to get caught up in the amount of time one has left.... Even doctors cannot know this answer and it is best they continue to treat any stage 4 BC person as someone with a chronic condition ... Take a deep breath and know you are not alone in this battle....

God Bless,

Debbie S.

suzan w · 03-14-2007, 03:27 PM

my first CT scan revealed a liver 'spot'...further tests showed the liver 'spot' was a hemangioma (sp?) or a cluster of blood vessels on my liver...nothing to worry about (ha!) doesn't sound like that is what your liver showed, but I guess not all spots are mets??!?