Topic: Damnit. Not sure where to post

Apr 19, 2012 11:07 PM msmouse wrote:

I've been scrambling for my records to take to UCLA. What should appear in my hands but the brain MRI disk and report. Not a doc but to me it says all clear. So not to worry about the brain. YEAH! I have everything BUT 1 pathology lab that will not give me the slides directly (unless I cross their palm w/ $15/slide & there are like 30 of them!) so I will be @ their office in the AM w/ a prepaid overnight fedex box so they get there on monday. Otherwise they would have been there "sometime tues" and my appointment is at 9a Tues. Need files from my primary doc (ready in the am) and the MO (i have an appointment & they promised I could have it all then) Everything else I have brought home, scanned & copied & filed. LOTS of duplicates. Except the path slides & the mammo films. Those have to be brought back with me. I think most everything will fit on an 8gig usb stick. 1 for me & 1 for the doc back east.

Today was a very good day. Everyone was SO nice. I will have a lot of chocolate deliveries when I get back! Skipped the Xanax even. Made it to the gym and did my routine. Feeling almost normal.

Hope all is well with you & yours. May the night bring us all rest & renewal.

Debbie

Apr 19, 2012 11:47 PM camillegal wrote:

Oh Debbie u sound like u have more control over this disgusting disease  Good Luck

Apr 20, 2012 12:14 AM Bon wrote:

Brain MRI that's great news.  You're so organized, love it. Hoping your Tuesday visit goes well.  

Apr 20, 2012 03:07 AM Naniam wrote:

Just dropping by to say I am sorry that you are dealing with this but when you sit back and think about it you become almost grateful you had the terrible pain - otherwise it could have gone on for a bit longer and that would not have been good.  

Wishing you all the best on Tuesday.  Hope you come back to us with a very good report.

Apr 24, 2012 11:07 PM Bon wrote:

Debbie, love your HOWEVER...  :)

May 5, 2012 04:04 PM msmouse wrote:

Back again to UCLA for the liver biopsy. This time no pain. They biopsied the smaller lesions and left the big one alone. Procedure was done at the Ronald Reagan UCLA hospital. What a beautiful building. Everyone was so nice! Because it is a teaching hospital the fellow did the procedure w/ the specialist in charge monitoring him but had great sedation (versid) but was awake & alert. Talked at length the the Doctor in charge about the possibility of ablating the smaller masses and potentially doing some interventive prodedures to the large one along w/ systemic chemo. Gave me his card & email address & told me it was ok to follow up after the pathology  was back so we'll know what can be done. Pathology hopefully back by Wed. All in all a really postive experience. My daughter is coming down from Portland OR for Mother's day & going to stay a few days. Best gift ever!

Hope all is well w/ you& yours.

Debbie

May 5, 2012 07:11 PM CoolBreeze wrote:

Did you ever ask why they thought it was unusual to have breast go to liver?  Liver is one of THE places that breast cancer spreads to so I am curious what they saw that was different? Maybe because it's only in the liver and nowhere else?

If they ever talk about liver resection with you, let me know.  I had my left lobe removed and a spot on the right lobe ablated.  I went to UCSF to have that done.  Not an easy operation at all but maybe it will pay off.  I don't know yet.  

May 5, 2012 10:21 PM, edited May 5, 2012 10:24 PM by msmouse

Thank you rosasmommy. It's such a HUGE place I was not expecting how organized and how lovely it was.

Coolbreeze, I know the liver is a place for it to go but my friend back east said generally they see progression to bones & lungs before liver. No one expected it to be there. I had a clean PET in June and the Pet only showed the tumor & the cyst capsule in my breast. Nothing else llt up. My nodes were clear on biopsy. I had almost a complete repsonse to TAC (from almost 9CM down to less than 1mm) Good margins on lumpectomy. Clear MRI before surgery. 28 whole breast rads & 5 boosts. Every exam they checked for lumps, bumps and tenderness & NOTHING. To find this big thing in liver & its little friends was a big shock to everyone. I asked the UCLA guy about ablation & lobe resection. I'll be making an appointment after the pathology comes back & see what everone says. Am curious if it has the same make up as the 1st one or this is something different. I told the UCLA Dr. I am favoring a "scorched earth" approach. Ablate it, poison it, nuke it, remove the left lobe. Be agressive while I have the physical ability to handle it. Other than having this dark passenger in my body I feel so good. Even with the AI I don't feel bad. I am going to check with the UCSF folks for another opinion too. But I want to get something started. Its been a month since they found it & 3 weeks since I found out it has malignant cells.

 Apologies in advance for the following food "porn" I love to cook and I love to eat!

Bon, the cake was a "tuxedo" cake. Chocolate & white chocolate layers w/ ganache of both types of chocolate. Vanilla bean ice cream. The bakery i use sells cake by the slice so we split it. Dinner was snow crab legs (no king crab) and some nice lobster tails. Followed a u tube demo on how the resturants get them loose from the shell & have the meat cooked on the outside. Then grilled them & basted w/ seasoned butter. Rice pilaf style orzo, asparagus & a nice sav. blanc. Let hubby have all the crab; seems like lately I feel full with only a little food. It was a lovely evening and romantic. Which you all know is so much more difficult after what we have been thru.

I really appreciate when I've read accounts from everyone on how they feel they were treated by Drs, hospitals, imaging centers etc. Good and bad. I also thing its important that if they don't give is surveys to fill out that we ask for them! We do have choices and we are the consumers. They might be the "experts" but are we not the experts of our own bodies?

keep looking for zebras my friends. I appreciate all of you and your honesty.

Debbie

May 11, 2012 05:42 PM PJB wrote:

That just goes to show what a weirdly mixed bag we are in all this Stage 4 stuff. I'm glad you're getting the ansewrs nailed down, and I hope the new regimen obliterates the cancer. Please let us know how it goes. Etopiside is one of my potential future chemos, so I'm really interested in how you do with it! Paula

May 16, 2012 07:37 PM msmouse wrote:

Saw the MO yesterday and today started chemo. No port yet because they were in such a hurry. 2nd stick was the charm and they have it set up to re-use over the net few days until  after the 10 days labs when they can schedule the port. Never thought I would miss that ugly thing! Chemo is carboplatin & etoposide. Today had both; thurs & fri the etoposide & friday I get my old nemesis neulasta.

PJB; its much easier so far than TAC. Started the generic compazine last night with generic prilosec. Compazine this am with the vitamins. Green tea & lemon loaf for breakfast after the gym.  Then IV, premeds then chemo. It took maybe 3 hrs and most of that was getting the IV settled. A hour to run the carboplatin & 45 minutes to run the etoposide. Tomorrow may be an hr or a little more w/ the premeds. I'll let you know when/(if) it starts raining hair.

The appointment with the MO was good. I didn't get to see the path report until today but its WEIRD.

The biopsy shows sheets of tumor cells with round, ovoid or short-spindled nuclei, fine chromatin,

inconspicuous nuclei, and modest amount of cytoplasm. Nuclear crowding and overlapping are

prominent. There are frequent mitotic figures and brisk apoptotic activity, with large areas of tumor

necrosis. There are only occasional glandular structures with luminal formation. No bile or mucin

production is noted.

Immunohistochemical stains demonstrate the tumor cells to be positive for pancytokeratin (AE1/AE3) with

occasional paranuclear dots; positive for cytokeratin 7; and negative for cytokeratin 20, chromogranin,

synaptophysin, TTF-1, CDX2, ER, mammoglobin and GCDFP-15. Greater than 95% of the tumor cells

are positive for Ki-67.

The above.findings are consistent with a diagnosis of poorly differentiated carcinoma with features of

small cell neuroendocrine carcinoma (or small cell carcinoma). Re-review of the breast specimens (R12-

11259) shows two

foci of tumor cells in left breast lumpectomy specimen (SZ:S11-7058 slides B4 and B8;

11/15/2011) that exhibit similar neuroendocrine features, in addition to the presence of typical high grade

ductal carcinoma (slide B3). This finding thus suggests that the liver tumor seen in this biopsy represents

metastatic small cell carcinoma of breast primary. However, the possibility cannot be completely excluded

that both breast and liver tumors represent metastasis from other anatomic sites, particularly the lungs.

A zebra; or the "dark passenger" as I have decided to call it.  In my MO's opinion its breast mets and makes me stage IV. UGH.

Monday I see the local small cell "expert".  I think i'm going to ask what happens if the current plan A doesn't pan out what's on plan B,C,D etc. If it shrinks can they ablate it or cut it out. Do they need to look for a possible "other" primary? Do they need to sample chest & abdominal nodes? Do I even want them to? I know cure isn't a real goal but I'd like some time with NED to get my life in order. Oh, also forgot to ask if they checked for hormone markers. Will see if possible. Will still be on arimidex for for another 4 years & 11 months.

Coolbreeze, how are you doing?

hope you all are doing well and enjoying spring in your part of the world. In Las Vegas it has been WARM. It is not not HOT until its over 105. but is a DRY heat! LOL

Best of everything to you & yours.

May 22, 2012 05:42 PM msmouse wrote:

I clicked the "SEARCH" field on the left panel & see that the topic "FASLODEX GIRLS" seems to have a wealth of info regarding bone mets. Mine seem to be in the liver only so not dealing with bone issues. Best wishes to you and I know you will find info and sisterhood to help you on this life journey. I know I've learned to question everything & be a better advocate for myself by participating here and don't forget to click the breastcancer.org link to the official site information about all stages and treatments.

Debbie