A Haze Hovering Over Me

Options
Kaso
Kaso Member Posts: 61
edited August 2017 in Waiting for Test Results

Tomorrow starts week 7 of my unplanned "journey". I will be honest and admit that I didn't know how I'd make it through when told on June 13th that the 8mm spiculated mass is likely cancer. I typically take control of where I go and what I do. This diagnosis has been something I do not have in my control. A cancer diagnosis I quickly learned wrecks all plans and ruins any semblance of "normalcy". It is an ever present nemesis to any routine. Here, as I began a journey of unknowns, I knew I had no choice but to embrace every moment and to trust not only in G-d but in people who I never knew before, but I am having difficulty remaining upbeat.

Is it normal/wrong to not feel upbeat? Surgery- partial mastectomy and sentinel node biopsy followed 2 weeks after the mass was spotted. Test results came in in bits and pieces over the next 4 weeks- BRCA 1&2 negative, 32 genomes negative. ER 100% positive +3, Progesterone 5% positive +2, HER & fish both negative. Tumor size 1.5 CM, Grade 1- well differentiated.5 SN clear.Margins clear. Diagnosis: Invasive Ductal Carcinoma.
Last week I met the radiologist oncologist who set me up for an August 23rd simulation and CT scan. The plan I was told is hypo-fractionated radiotherapy- 4 weeks, 5 days a week. The RO said AI will follow radiatiotherapy. I embraced this plan for 1 week. Yesterday I met with the medical oncologist and now I am told I have to wait until August 21 for results of the oncotype dx. Why couldn't or wasn't this ordered at surgery? Results can change everything. The MO doesn't believe in treating with chemo any intermediate onco scores, unlike other hospitals as she informed me. If chemo is needed the MO believes the stronger the better. The MO won't talk about AI (inhibitor) effects or possible interventions. She suggests that when I start radiotherapy that I start AI at the same time. (I told her quickly not and that I need to handle any side effects of each separately.) She wants to slow down my anxious mind that wants to know everything NOW. The MO is taking away any of my power and control, and without I am struggling with a happily ever after being all the more challenging. Advice please. I am feeling like there is a huge boulder in the way of my recovery and a haze hovering over me.

Am I alone in feeling sad and confused, and in losing trust?

· Share on FacebookShare on Twitter

Comments

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2017

    Kaso, I'm sorry you're having a rough time.

    You might get more help if you copied and pasted this post in the IDC forum. This forum is primarily for people who have NOT been diagnosed who are waiting on imaging results, biopsy results etc., so most of them don't have any experience with what you are asking and the ladies who can help you probably are not reading this forum..

    · Share on FacebookShare on Twitter
  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited August 2017

    Hi Kaso, going through all these cancer procedures is really a struggle isn't it? It's so hard to find a goal and work towards it when things keep changing. This "haze" you describe is absolutely normal. I know I was freaked over the loss of control and the constant feeling of doom going on in my head. Trust me, with time it gets better.

    Your diagnosis is very similar to mine - strongly ER positive and weakly PR positive. (Except mine was grade 2). My Oncotype came back at 18 (MO said because my PR was weak it likely skewed my numbers) and no chemo was recommended. Yay! I'd be surprised if your number was any higher.

    Have you thought about what you'll do if your numbers are in the gray area? Will you go with your dr's recommendation or ask for a mammaprint?

    I learned there was no way to figure this thing out or have much control over the course of treatment. I just had to keep marking days off on the calendar until it was over. You'll be fine - just keep hanging in there

    · Share on FacebookShare on Twitter
  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2017

    Hello, Kaso. I can relate to your feelings, been there. There is no requirement for you to be upbeat. This is a difficult time for you and pretending it isn't can just add more stress. I will tell you what helped me. First, I found a cancer support group where the other women and the facilitator (psychologist) gave me comfort and a sense of normalcy in the crisis. Because my feelings and experiences were normal there. Second, a wise nurse told me that to deal with the loss of control and the agony of waiting, I could turn my attention to the things I could control that would promote my health. So I researched, planned, and took action in the areas of nutrition, sleep, exercise, support, and de-stressing. (Let me know if you want more details.) Also, to help deal with the stress of not knowing my possible path, I read the NCCN guidelines online, the professional ones not just the patient ones, so I could follow along on the flow charts and confirm that my docs were doing the right thing and see what might be next. (Whether this will be helpful depends on your tolerance for heavy reading about medical stuff.) Have you tried explaining to your onc that you are a person who feels better knowing more not less, and that you want to talk about what may be coming? You do have a right to get your questions answered. I have found that oncs seem to prefer sticking with just the current step, but some of us need to mentally prepare for different possibilities. If your onc can't handle that, maybe a second opinion is in order.

    · Share on FacebookShare on Twitter
  • marijen
    marijen Member Posts: 3,731
    edited August 2017

    Well said Shetland Pony!

    · Share on FacebookShare on Twitter
  • Kaso
    Kaso Member Posts: 61
    edited August 2017

    Thank you Shetland Pony

    Your words were perfect. Each expressed my inner needs. I will print from the NCCN guidelines- that knowledge is my power. May I ask you determined that your cancer returned? Was the return site different in location from the original site? And, how did you find such a support group as you mentioned? The cancer center near my home has a group run by social workers and with set discussion vs open discussion that I am seeking.

    · Share on FacebookShare on Twitter
  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2017

    You're welcome, Kaso. I found the support group at a hospital. You might call and ask all the hospitals in your area. In my experience these groups welcome everyone, whether they are patients at that hospital or not. Also contact Cancer Wellness Community (aka Gilda's Club) to find their cancer support groups that are not hospital-based. And I think the American Cancer Society has a list of groups.

    http://gildasclubwestchester.org/

    I don't mind answering your question, but please understand that everyone's story is different, and don't let me scare you. Your "stats" look pretty good. In my case, recurrences were found at the same time in the same breast (different quadrant), and in the liver. My annual mammogram followed by ultrasound had found something but they told me to wait six months and re-check. It was palpable. Six months later my annual breast MRI followed by ultrasound saw it and I had a biopsy. Physical symptoms followed by a liver ultrasound then PET/CT scan led to that diagnosis.

    Good luck, and come back and let us know how you get on, if you like.

    · Share on FacebookShare on Twitter

Categories