What questions should I be asking

Chelee · 09-23-2009, 12:49 AM

now that I've had a local and regional recurrance? I am so over whelmed with all the appts they have thrown at me today. I have labs, port accessment, brain MRI, ECHO this Saturday, Herceptin starts Monday, 2nd opinions to get set up asap. I had so many slips for appts today my head was spinning. Plus I need to see a dentist...so I need some help here please.

What tests, scans or whatever should I be asking for. How about the Her2 serum test now that I'm stage IV. Shouldn't I have a baseline. What about BRCA testing...I've asked before and was denied. Any and all help would be appreciated....I'm on over load right now. Tonight I don't even feel like I can do all this again...what should I be asking my onc & the 2nd opinions onc's I end up seeing? I will ask about the best choice of chemo options, and of course this chest wall recurrance & how we can best handle it if at all? I have lots of questions here already just from my PET/CT...but I don't want to forget anything. Plus the mets to my femur is causing me pain & lots of swelling in my right foot...how do they treat that...rads? Does it get rid of the pain. My head is spinning.

Chelee

Believe51 · 09-23-2009, 01:11 AM

Sending you more love. You are on overload, and yes Sweetheart, you will be able to do this. One step at a time, for now you breathe. I'd say get some sleep but then I should talk. Breathe with me right now.>>Believe51

Pam P · 09-23-2009, 04:55 AM

Chelee - First of all I am sorry to hear your news of reccurance.
Marie said it all ---- you are on overload right now; you will do this - you are doing this.... one step at a time. Try try try to breathe and relax and know that the right questions and answers will come to you. You are smart and thorough and informed. It always helps me to write a list of questions I want to ask the doctor ahead of time so when I'm there I can refer to the list and not forget anything. There are so many excellent treatment options you and your onc. will decide on the best for you. Keeping you in my thoughts.

Joan M · 09-23-2009, 08:28 PM

Chelee,

I'm sorry you're having to go through this, and also that your onc has not been cooperative in looking after your symptoms.

I would agree with Pam about making a list of questions. Try to break it down between general chemo treatments (systemic) and other treatments (local) directly targeting your chest wall and bone recurrences.

You have a lot of options, such as Tykerb and Xeloda, to start. Also, I noticed that your signature shows you are slightly ER+ and had an oophorectomy, so you may benefit from an estrogen blocker or an AI. It seems your onc recommended a hysterectomy but not a biological agent, which seems inconsistent. Also ER+ bc tends to spread to the bones.

I'm sending you a lot of hugs for comfort.

Joan

Joe · 09-23-2009, 08:44 PM

Chelee,

I would recommend the Serum HER2 test as it may indicate if your treatments are working.

Ask about entering the T-DM1 trial.
It is promising drug. Here are active trials in California
I see Dr. Link is doing one "Breastlink"

Regards
Joe

sarah · 09-24-2009, 10:34 AM

Hello Chelee,
I'd like to add to what they others advise: ask to go back on Herceptin
I would also agree that an aromatase inhibitor to block estrogen might be in order - ask about that.
I had swollen feet all through chemo and slept with my feet up on several pillows and word larger shoes. If you're heart's ok, check your salt intake.
Stay strong and take deep breaths and get lots of hugs.
hugs and love
sarah

Rich66 · 09-24-2009, 10:52 AM

Although a tad controversial, Circulating tumor cell test (CTC), (maybe DTC as well) could be useful:

1: Am J Clin Pathol. 2009 Aug;132(2):237-45.

Links

Circulating and disseminated tumor cells in the management of breast cancer.

Ross JS, Slodkowska EA.
Department of Pathology and Laboratory Medicine, Mail Code 81, Albany Medical College, 47 New Scotland Ave, Albany, NY 12208, USA.
Despite the advances in early detection and treatment of cancer, patients continue to die of the disease even when they seek care at an early stage. For patients with breast cancer, it is now possible to detect circulating tumor cells (CTCs) in the bloodstream and disseminated tumor cells (DTCs) in the bone marrow by using immunocytochemical and molecular methods. CTCs and DTCs have been found to share similar genotypic and phenotypic characteristics with so-called breast cancer stem cells, a finding that could potentially explain the eventual relapse of disease in a patient previously considered to have been cured by primary therapy. In some studies, the presence of CTCs or DTCs at the time of diagnosis of breast cancer is an independent adverse prognostic variable. However, before CTC/DTC testing can achieve standard-of-care status, there must be improvement in the sensitivity, precision, and reproducibility of the detection methods.
PMID: 19605818 [PubMed - indexed for MEDLINE]
1: Ann Oncol. 2008 Mar;19(3):496-500. Epub 2008 Jan 10.

Links

Prognosis of women with stage IV breast cancer depends on detection of circulating tumor cells rather than disseminated tumor cells.

Bidard FC, Vincent-Salomon A, Sigal-Zafrani B, Diéras V, Mathiot C, Mignot L, Thiery JP, Sastre-Garau X, Pierga JY.
Department of Medical Oncology, Institut Curie, Paris, France.
BACKGROUND: At metastatic relapse, detection of circulating tumor cells (CTC) in peripheral blood is predictive of poor survival of breast cancer patients. Detection of disseminated tumor cells (DTC) in bone marrow (BM) is an independent prognostic factor in early breast cancer. We evaluated the prognostic value of DTC detection in the BM of metastatic breast cancer patients. MATERIALS AND METHODS: BM aspirates from 138 patients were screened for DTC with the pancytokeratin mAb A45-B/B3, according to the ISHAGE classification. One hundred and ten patients (80%) were enrolled before first-line treatment. Thirty-seven patients were simultaneously screened for CTC in the blood. RESULTS: DTC detection rate in the BM was 59%. DTC were associated with bone metastasis (P = 0.0001), but not with a poorer overall survival. Adverse significant prognostic factors were hormone receptor negativity (P = 0.0004) and more than one line of chemotherapy (P = 0.002). CTC detection in the subgroup of 37 metastatic patients was associated with shorter survival (P = 0.01). CONCLUSIONS: Detection of CTC but not BM DTC had a prognostic significance in stage IV breast cancer patients. CTC in blood are a more reliable and a less invasive tool to evaluate prognostic and monitor tumor response in this metastatic setting.
PMID: 18187488 [PubMed - indexed for MEDLINE]
Anti-epithelial cell adhesion molecule antibodies and the detection of circulating normal-like breast tumor cells.

Sieuwerts AM, Kraan J, Bolt J, van der Spoel P, Elstrodt F, Schutte M, Martens JW, Gratama JW, Sleijfer S, Foekens JA.
Department of Medical Oncology, Josephine Nefkens Institute, Cancer Genomics Centre, Rotterdam, the Netherlands. a.sieuwerts@erasmusmc.nl
Identification of specific subtypes of circulating tumor cells in peripheral blood of cancer patients can provide information about the biology of metastasis and improve patient management. However, to be effective, the method used to identify circulating tumor cells must detect all tumor cell types. We investigated whether the five subtypes of human breast cancer cells that have been defined by global gene expression profiling-normal-like, basal, HER2-positive, and luminal A and B-were identified by CellSearch, a US Food and Drug Administration-approved test that uses antibodies against the cell surface-expressed epithelial cell adhesion molecule (EpCAM) to isolate circulating tumor cells. We used global gene expression profiling to determine the subtypes of a well-defined panel of 34 human breast cancer cell lines (15 luminal, nine normal-like, five basal-like, and five Her2-positive). We mixed 50-150 cells from 10 of these cell lines with 7.5 mL of blood from a single healthy human donor, and the mixtures were subjected to the CellSearch test to isolate the breast cancer cells. We found that the CellSearch isolation method, which uses EpCAM on the surface of circulating tumor cells for cell isolation, did not recognize, in particular, normal-like breast cancer cells, which in general have aggressive features. New tests that include antibodies that specifically recognize normal-like breast tumor cells but not cells of hematopoietic origin are needed.