Neo Adjuvant Chemo - Care to Share?

I'm not sure if I should be posting an update to the topic/thread I started on 4/20/17 or if I should be starting a new topic. I recall reading a response from a community member to a newbie that she should stick to one topic so that all her background info was available. Well, sisters and brothers, I'm counting on you to tell me if I'm doing this incorrectly!

To recap a little, I saw my BS for the first time on 4/19. She recommended that I have neo adjuvant chemo to shrink the tumor and hopefully clear the lymph prior to surgery and set up an appt for me to see an MO. She also scheduled a blood test, a Total Body Bone Scan and a CT Chest/Abdomen/Pelvic with contrast. The blood test came back fine with the exception of a high glucose reading, which I had been told to expect because I didn't fast.

The wait until my scans on 4/24 seemed to go on forever. The wait for the results of the scans was tortuous. Already knowing that my BC was not caught early, with a large palpable lump, and biopsies of 2 lesions in my left breast and 1 abnormal looking lymph on my left coming back positive for IDC, I have been a wreck. My anxiety actually made me physically ill - with tightening across my upper chest and abdomen that was not only uncomfortable, but made it difficult to eat and easy to imagine all sorts of things.

This morning my PCP called with the results. (She was also the one who called me with the results of my biopsies). Outside of things I already knew about (fatty liver, osteoarthritis), both the bone scan and CT came back with no evidence of metastatic disease. Hallelujah! Almost immediately, the heaviness in my chest and abdomen started to ease up a little.

One thing I am curious about - my biopsies on the left side axilla lymph and 2 left breast lesions all came back positive with similar histologies. The CT scan comments note the clips that were inserted during biopsy but the CT doesn't seem to have picked up anything in the left lymph area, where I know I have at least 1 positive node. I guess I don't know enough about how CT scans work and what they can/can't pickup. Another question for my MO, who I meet for the first time tomorrow afternoon.

And because I know that there will be many more uneasy, nerve racking waits, I asked my PCP for something to take the edge off my anxiety. She's prescribing buspirone. Anyone familiar with it?

Kicks, Blue Koala and Elastogelgirl (sorry for earlier misspelling of your handle!) - thank you, thank you for being there for me when I was at my most anxious and fearful. I know there will be more days and nights like that for all of us, and I hope that I can be a support to you too. Be well! Lots of Hugs and Thanks!

Hi All, It's me back to report what I learned at my first MO visit yesterday afternoon. My doc is one of a group within an Oncology Clinic with its own lab, chemo treatment room and the ability to do some testing on site. I had an EKG and additional blood work done while I was there. Everyone going in and out seemed so normal. No one looked sad or fearful. I was nervous when I arrived but settled down the longer I was there.

I will be receiving neo adjuvant chemo over a span of 20 weeks. First, Adriamycin® (Doxorubicin) and Cytoxan® (Cyclophosamide) for 4 treatments, one every other week for a total 8 weeks. Followed by Taxol® (Paclitaxel), 12 treatments, one a week for 12 weeks. He explained that there is really no difference in recurrence rates between chemo before or after surgery, but that neo adjuvant chemo is done to benefit surgery. In my case, my surgeon would like to see the tumor shrink and give me the option for a lumpectomy.

After surgery, he expects I will do radiation therapy and then go on an anti-estrogen therapy (probably an aromatase inhibitor because I am post menopausal) for at least 5 years. My surgeon had mentioned 10 years, but the MO hesitated and said something to the affect of there being no survival data...I was busily taking notes but stopped and looked at him. He very kindly said not to worry, that 5 years down the road there will be new and better options. Oh PLEASE, I hope so!

I asked him if it was possible to stage and grade my BC. He checked my biopsy results and was surprised that it wasn't done, but do you think that maybe the radiologist realized that the 2 lesions that had been biopsied might actually be a single large tumor? After a physical exam, during which the MO measured the lump at 4cm or slightly larger, noted that I had 1 positive lymph node and that my Total Body Bone Scan and CT Chest/Abdomen/Pelvis came back with no evidence of metastatic disease elsewhere, he gave me a Stage of IIb and Grade 2. While that was better news than I had expected, I don't know if it was reached very scientifically, if you know what I mean. But maybe Stage and Grade are always something of a guessing game?

I brought up my concern regarding the CT, which did not show any inflammation in the area of the positive lymph node. Why not? His answer was that mammograms, ultrasounds, CT scans and MRIs are helpful diagnostic tools but don't tell us everything. My elation over the clean scans somewhat dampened, I could feel the anxiety building up from the pit of my stomach. After all my treatments, how would I be monitored for recurrence since my dense breast tissue makes it so difficult to detect? He said I could do MRIs but that the problem with that is the high percentage of false positives. He felt the best option for me was to make sure I always receive 3-D mammograms (as I haven't always in the past).

Now that I know more about my treatment plan it's time to break the news to my daughter and siblings. I also have a trip to cancel in June - by then I will probably be on my weekly chemo treatments.

On 5/5 I go back to the clinic to meet with the Nurse Practitioner for chemo counseling, make sure all my vaccinations are up to date and ask all the questions that I have about preparing myself for 20 weeks of chemo treatments. That same afternoon I'm scheduled for an Echocardiogram at the hospital next door. On 5/10 I'm back at the hospital for single lumen port insertion. After that my start day will be set and I'll see the MO again before chemo begins. (MO has already told me I will lose my hair and NP said it would start around treatment 3)

In the meantime, I've asked the MO what I can do to stop feeding this cancer. (My ER+ is 100% and PR+ is 70%.) Afterall, I had a total hysterectomy in 1996 (fibroids) so I thought I wasn't producing estrogen anymore. He said that my body still produces both "female" and "male" hormones and has the ability to change testosterone to estrogen! He suggested that one thing I can do is to cut my fat intake by half and bring down my BMI. That reminded me that my BS had also told me that after treatment, it would be important that I not gain weight to help ward off recurrence.

I picked up the prescription for buspirone (5 mg, 2X a day), called in by my PCP, on my way home. I was doing pretty well anxiety-wise, so I didn't start taking it. Still, I didn't get more than 4 hours of sleep and woke up feeling a bit anxious. Now I'm sitting here reading the "How to Use" and "Side Effects," and really weighing the benefit to risk. "When this medication is started symptoms of anxiety may sometimes get worse before they improve. Dizziness, drowsiness, headache, nausea, nervousness, lightheadedness, restlessness, blurred vision, tiredness, and trouble sleeping may occur. Rarely, patients may develop movement disorders...in some cases, these conditions may be permanent." Yikes! Plus, it requires taking at the same times every day, under the same conditions (with or w/o food), takes a month or more to feel the full effects and reacts with a number of OTC meds. I just don't know if I should risk it.

Well, that's my long story, long. I'd love to hear your thoughts and experiences if any of this is familiar. You've taught me so much already and I do appreciate your help and support.

I hope you are all doing well and enjoying your weekend. Lots of Hugs and Thanks