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Waiting is the worst….

This is my first post so I apologize If I’m doing this wrong. According to biopsy results I have both IDC and DCIS. Lucky me. 🙁


I met with surgeon, medical oncologist and radiation oncologist yesterday, but nothing can be decided until MRI is completed and HER2 results come back.

I’m a mess and don’t know what to do with myself. Any suggestions on how to cope with the anxiety or words of encouragement would be greatly appreciated.

Comments

  • annabelle2
    annabelle2 Member Posts: 27

    This is the worst part - the waiting in between diagnosis and treatment plan. Once things are in motion you will start to feel better. I promise.

    I wish I had been more proactive/productive during this phase - cooking or prepping freezer meals, cleaning, organizing, anything to keep my mind occupied, my hands busy and away from constant googling, anything to help me feel "in control" of the situation. I would also recommend interviewing therapists as a "stay-busy-activity". You might not feel like you need it right now, but down the road you will want to have someone that is already on your team that can help you work through feelings and emotions and mental health issues. (FYI it gets worse after treatment is over).

    My diagnosis is different from yours so I can't offer specifics, but I am 5 years out from my diagnosis, and while I am struggling beyond belief with mental health issues related to my cancer, I am alive, currently NEAD, and hopeful that tomorrow will bring new peace of mind, new opportunities, new resilience, new strengths, etc.

    Hang in there, sending hugs!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,630

    dsc,

    I’m sorry that you find yourself here. The thing I want you to remember is, Don’t borrow trouble! You are so early in the diagnostic process that you can’t know for certain what your treatments will be so try not to go to the worst possible scenarios. I will say what you might be thinking… has it spread? Am I terminal? In a nutshell, the answer is, highly unlikely! About 6% of new diagnoses are metastatic to begin with so that is why it’s unlikely. Please put that concern into a tiny corner of your mind because it’s not impossible but it’s not likely.

    DCIS and IDC occurring together is common. Since IDC is invasive, that will be significant in determining treatments and that will also take care of the non-invasive DCIS. In essence, you’ll be treated for the IDC but that will take care of the DCIS as well.
    I will say that many of us have experienced bc, especially in the beginning, as a lot of waiting. It is frustrating and anxiety provoking but by and large it won’t affect your cancer, i.e. bc is usually slow growing. The waiting will not be detrimental to you physically but it stinks on the mental/emotional end.
    So, focus on what you know, try not to speculate about what you don’t know and stay as much in the present as possible. Oh, stay away from Dr. Google. He seems to turn most things into medical catastrophes. None of this is easy but it is worth practicing. Take care

  • dsc
    dsc Member Posts: 50

    Thank you both so much for you help. It means a lot. ❤️❤️

  • salamandra
    salamandra Member Posts: 719

    I found the time period between the malignant verdict on the biopsy and the first meeting with the surgical oncologist to be the toughest. I had about a ten day wait, but it meant that going into the meeting I did already have my full biopsy pathology results.

    Things that helped were talking with friends/family; my brother came to visit; finally giving in and asking for some anti-anxiety meds that helped a lot; giving myself permission to be scared. I actually ended up buying a burial plot next to my mother (who died of breast cancer in her fifties) during that time. I rationalized that I'll be able to use it one day no matter what happened with the cancer. I also played a lot of my favorite video games and did not feel guilty about it.

    You will get through this one step at a time.

  • dsc
    dsc Member Posts: 50

    Thank you for your reply. It helps makes me feel like what I’m experiencing emotion-wise is to be expected.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 149

    I found waiting for my mastectomy - so from diagnosis to surgery was almost 6 weeks. I found that frustrating. I wanted this all to be rushed and to happen fast. But it didn’t. I was ultimately ok. But yes the waiting is the worst. It’s all hurry up and wait!

  • sarahmaude
    sarahmaude Member Posts: 324

    DSC, I'm about a year behind you and felt the exact same way about the waiting. I had to wait what felt like forever for my FISH test, and the MRI revealed images that the radiologist was certain were additional tumors. She was wrong, and I did get the FISH test back. It took me 6 weeks from diagnosis to surgery, and another 5 weeks before I started chemo. There was waiting that took longer than I expected after surgery to find out if I needed chemo.

    What I can say now that I'm 2 days from the one year anniversary of my first chemo treatment, is that waiting is a very distant memory, and none of that delay affected my outcome. Yes, I was an anxious wreck, but if I could talk to my past self, I'd reassure her that in time those weeks of delay would pass and that she would come out well.

    I did manage, during that time, to exercise daily (walks this time a year are great!) and enjoy myself as much as possible to prepare for treatment. I'm glad I did. I hope you get answers as soon as possible, and know that once you have the answers and a plan, you are going to move through the process, and a year from now, you'll be telling another person your story.

  • dsc
    dsc Member Posts: 50

    thank you for your reply. It is so helpful. I will definitely take your suggestions to heart. May I ask, why did you do chemo if you were HER2– ?

  • sarahmaude
    sarahmaude Member Posts: 324

    I did chemo after surgery due to my tumor having a high chance of recurrence. The OncoTypeDx test provides a genomic analysis of your tumor and a recurrence score. For post menopausal women, a score over 25 gives confidence that chemotherapy is beneficial to overall survival. My score was 49.
    I was fairly certain that I’d have a higher score as my tumor was Grade 3 and was PR- These tumors tend to be more aggressive. The great thing, though, is chemo is more effective on fast growing tumors since it targets the fastest growing cells.
    I was also fortunate to get a chemo regimen that was only 4 treatments over 12 weeks. I started chemo on 5/4 and last dose was 7/6. I finished radiation on 8/24. A year after starting chemo, I feel great most days. In fact, it’s easy to have long periods where cancer is not even on my mind, and I just enjoy life or I can even be miserable about something totally unrelated to cancer.

  • dsc
    dsc Member Posts: 50

    my goodness. At this point I can’t even imagine going days without thinking about cancer. Thank you for sharing. You definitely give me hope. ❤️