Feeling confused & Sad today

new to this support page, this is my 1st post....

My mom was diagnosed on 6/9/09 - stage 4 (b/c the tumors are so large); HER2 + not sure of the other technical data, but we are always told that it is "locally aggressive."

In June via the Pet scan we found that it had not spread anywhere else- no lymph node involvement, etc either. But then in August it spread from the left to rt breast so is now considered "metastatic." Dr says there is no need to do any further CAT or PET scans at this time b/c even if it has spread, they would be treating it the same way.....

She has a port and is doing Herceptin every 3wks; was doing 2 other chemo drugs via the port but those quit working in Aug when it spread and now she is on Xeloda - on 7 days, off 7 days, that seems to have stopped it spreading so far; the info I have read on Xeloda online says it "delays progression for avg of 8.9 months," so that is scary too.. what happens after the 8 months????

Today, mom says she is itching again and had pain shooting through left breast - has not happened since June, so I am not thinking that is a good sign. Trying to stay positive but feeling sad. would really like some support and to connect/talk to someone who has been through this and is doing well! My mom's is rare too b/c it is on the OUTSIDE - looks like cauliflower and the tumors are large - anywhere from raisin size, to grape size, to golf ball sized. Dr. says they cannot be cut off at this point either.

any feedback is welcome, really would like someone to talk to...

[Mary Anne in TX]

I think you would be helped by being told more clearly what is happening. I of course do not know, but you should. Is there someone else in that office that you know that would give you some time to tell you exactly what is happening to your mom. You might begin by telling her that you are extremely stressed and need a little help understanding what is going on with your mom.
ma

they always say she is doing great & that all of her bloodwork is great. The Dr and nurse practioner are happy with the current results... she has not called them yet to update them that there are a few more new growths. I think she is so afraid that she is pretending nothing is wrong - it infuriates me, I have asked her to call the doctor and update them since yesterday but I can't make her do anything and I am trying to work right now too

[schoolteacher]

Hope your day has been better, and some of your anxiety has been reduced today.

I found talking to someone who has gone through this to be of help.

Amelia

[Jackie07]

Benne0505,

There is a thread (or 2) entitled "Long-time surviors" that you might want to look up (use the 'Search' button on the yellow bar.)

Her2 is usually very fast growing. But once it's caught, it can be treated quite successfully with Herceptin and chemo. Most statistics are old, pre-Herceptin era numbers. Things have been looking 'up' ever since Herceptin has become the standard (2005? 2007?) Yet everyday we are seeing new treatment schedules being tested.

Oncology staff tend to be 'tough' and sometimes don't act like normal human beings. They are facing life and death every day. So they sometimes forget how we as patient or loved ones are feeling. I had a big fall-out with my oncologist because he just wouldn't believe that I had 'mets'. Well, he's right, but not after I had a consult with a G/I doctor and several scans that finally gave me some 'peace of mind'. I think in this case, after you read the 'long-time' survivor threads, you will feel much better about the situation.

I'll be praying for your mom.

[Jackie07]

Benne0505,

How's your Mom been doing?

[Adriana Mangus]

Hi;


Please update us on your mom.

I'm sorry, you must feel scared and lonely. Although we can't be there physically, you can always talk to us here, on the web. Stay positive, your Mom needs you, am sure she's in good hands, with your help she'll be just fine.

Love,

Adriana

[Adriana Mangus]

Hi: I have been out of the country for awhile and away from the group.

How's your Mom?

I hope to hear good news...

Love,

Adriana