Just Diagnosed and So Confused; Feeling Lost

I agree that you are not whining! I also agree that the squeaky wheel gets the grease, I also find that for myself it helps to just call and talk to the scheduler or the nurse and just ask for clarification. If I express my anxiety and feeling like I don’t understand what is happening or what the plan is, they are usually very helpful!

hi - i am having problems too with doctor's office screwup - maybe even lying and sure know how you feel - call the Cancer Society - they may have advocacy available - i'm replying just to give a ray of hope as i just celebrated 10 years of being cancer free - i was lucky as it was found early in a routine mammogram - i urge everyone to get their mammograms as early detection can be a life-saver. Good luck to you - this too will pass.

With HER2+, you need chemo.....if oncotype test comes back low, maybe that will change. You need surgery first, then chemo if needed, then radiation then hormone therapy.....these are only standard answers. Every cancer is different Mine was IDC estrogen and progesterone same as yours, but my Her2 was negative so no chemo. Logotype was 9, low...I only did lumpectomy...easy surgery home same day, minimal discomfort. I could not tolerate hormone therapy. So nothing else. So far, almost 3 yrs. No recurrence.

Your oncologist advised against it!!??? That is the determining test to see if you really NEED chemo!!! If test score is low, no chemo needed........unless you had special case.

@cctoo
Due to the pathology of the first tumor, the chemo was standard treatment. Standard diagnostics is bone scan and body scan which both showed the first tumor. I asked my breast surgeon to order an MRI breast as I was worried about the unaffected breast and it was at that time the second tumor was noted in the first breast. The tumor pathology is quite rare for neuroendocrine differentiation, i.e. in less than 0.5% of the breast cancer population. My case has been discussed at 4 Tumor Boards at three different medical hospitals. I am satisfied with what has been done at this point. The Onco scores are used, yes, but are not always reliable as they do not test all gene types.

What are gene types? Should I get that test? Also is the home and body scan something everyone should get? I am not sure I have had best care, and my oncologist basically does nothing!! You are getting good care....best hope for the future!

cctoo - ask for an oncotype and mammoprint gene test.

@cctoo Bone and body scans are imaging studies. At the medical facility I go to, these are standard-of-care studies looking for metastatic disease elsewhere in the body. The breast MRI is not, but I had requested this for peace of mind and the surgeon approved. Had I not, my case would have been quite different. My suggestion is before you see your oncologist next, have a list of questions you would like answered and take a family member or friend in with you for support. My first oncologist was quite good, but I didn't get much feedback and so switched to another who responded more to questions. In our facility, we can also e-mail the doctor; if that is an option, you can email your questions prior to meeting doctor so that you both have time to think about what is concerning you. In my case of invasive breast cancer and neuroendocrine differentiation, one of the three cancerous nodes had eroded into the lymphatic system. For that reason, I required chemotherapy as well as 30 treatments of radiation therapy. Because of the nature of that one particular node, onco score for me was a moot point. Had I had cancerous lymph nodes that had not eroded, the onco and mammaprint may have been a valid option. All the best to you.

@treziesmom Good morning and welcome to MayoClinicConnect. I’m thrilled to hear that you are 10 years cancer free! Just great! Can you tell us a little more about the office screwup? Was it something serious? And why did they suggest calling the cancer society? Sure hope it was just a “pain-in-the-neck” sort of thing. Are you doing OK, otherwise?

Trixi, thank you somuch. .I will mention scans to onco.....sentinel more had microscopic amount of cancer cells...rest were clear.....three. I am almost three years out now and cancer antigen test 27/29 is now 10..started at 16....once says anything under 38 is normal....so feel well...have lung and mild heart issues so sorry more about them..am almost 83 now, but no one guesses!!! ...I waited three years before having mammogram for lump as was busy moving. And was on Premarin for over 20 years and taking it when found lump. Info says it is early stage!!!!?????