Needing some support

Bondgirl

I've been lurking on these boards since my initial diagnosis in June, 2010. You all have provided lots of support and answered many questions even though I never post.  I was diagnosed at 32 and my daughter was 20 months old. No family history. I was clinically diagnosed IIIA, ER+/PR- and HER2+.  I did 6 rounds of TCH followed by Herceptin for the remainder of the year. After chemo, I did a double mastectomy. My pathology showed 1 cm tumor and 2 micro mets in 2 out of 9 nodes (after chemo). I followed up with radiation. Then began my reconstruction journey. I was all set to finally have my nipples done this October. However, several weeks ago I came down with acute pain in my sholder and ribs with a swollen supraclavicular node.  A chest x-ray showed nothing and they scheduled me for a CT scan. I ended up in the ER prior to that CT scan because of the extreme pain.  Turns out I was diagnosed with walking pneumonia. Put on a 10 day round of antibiotics.  At my 3 month follow up with oncologist tumor markers were ran and mine were extremly elevated at 129.  We all hoped and prayed it was the pneumonia.  No one seemed concerned about the swollen lymph node. They immediatetly got me in for another CT (the prior did not scan the node...ER service at it's greatest).  Nothing lit up in the scan. However, something was noted on the liver. My oncologist actually mentioned it in passing.  Last week tumor markers ran again and they are up to 185. I know the gradual increases are bad news. My oncologist recommended PET Scan in 3-4 weeks (I think to allow time for whatever it is to show up on the scan) and is concerned about liver or organ involvement.  In the meantime, I think it's time to get my butt to a big hospital. I'm in Atlanta and I have received great care to date. However, I am trying to get an appointment at MD Anderson.  I don't know what I am seeking from you all. Just support....experiences....any chance I am not moving to Stage 4? Other than the effects of the pneumonia (or at least what has been diagnosed as pneumonia) I feel good. I was ready to put all of this crap behind me and move on with my life.

Thanks,

Tera 

itsjustme10

While I haven't been to them, have you checked out Emory Univerisity?  Usually teaching hospitals are on top of the most current treatments.  And if you can find a top notch medical team close to home, wouldn't that be easier than having to travel?  (If it's actually hours of driving away from you, I apologize - I'm not great with geography). 

 Good luck -hope you get your appointment soon, and that everything works out for you.

ali68

Hi Tera, really sorry your going through this what a horrible time for you. At least they do TM bloods, I live in England and they don't. If I were you I would get all the tests possible because the quicker they find things the better the out come. I'm not saying you anything wrong but better safe than sorry.

My BS told me I have fast growing Cancer and it takes 3 months to show that's why we are seen every 3 months.



Good luck Hun



Alison

Bondgirl

Thank you for the kind words. I ended up back at ER on Thursday where they admitted and are treating me for pulmonary embolism. The CT scan still not showing mets but they won't rule it out either since tumor markers up. Off the tamoxifen since blood clot known side effect. What the heck is going on with me? Anyone have something similar? I have had a terrible migraine upon admission but ruled out brain tumor or other brain clot last night with CAT scan. I'm HER-2+ so they are always concerned about brain mets.

Grateful they caught the embolism quickly but still really scared about mets. They are going to do a PET scan in about three weeks. Does that sound reasonable?