In 1 week, I’m having scalp surgery

CathySueH02
CathySueH02 Member Posts: 4 Member
in Skin Cancer #1

There is a tumor, a rare type of skin cancer close to the crown of my head. I believe they’re removing about 3” of my scalp.
Has anyone had similar surgery? I don’t know what to do … how to prepare … I’m afraid … of the unknown. I just know my head will be shaved. That’s it.

Comments

  • apetry
    apetry Member Posts: 3 *
    #2

    Hi Cathy Sue, I see it's been a couple weeks since you posted and I hope you're doing well. I've had a similar experience about 5 years ago and it can definitely be nerve racking and tough. When the surgeon first showed the area he was going to remove, I wanted nothing to do with that and was terrified. It definitely is scary and sucks while you're going through this process, but it will end and your life will get back to normal. Here are some things that I did that helped during my recovery:

    • Buy a few extra pillows as they will definitely help keep you comfortable in bed while recovering
    • Buy a couple random books about random topics that don't have any conflict. These can be good if you just need a distraction.
    • Buy a couple beanies to wear on your head. These helped me feel better as well as hold some of the bandages in place.
    • Make sure to have some sort of streaming service
    • If you are awake during the surgery, it helped me to just count in my head during it. I also had a coat that I wore like a blanket that helped calm my nerves some during surgery.
    • Make sure to tell people in your life that you are going through this experience. It's important to have some support even if it's just a couple people.
    • Buy a couple boxes of gauze pads. I went through a few because I had to change bandages daily.

    For me, the hardest part initially was seeing the scars. It's important to keep in mind they will not look great right after the surgery and take a few weeks to flatten out and it can take a couple months for them to heal.

    If you'd like to know about my specific experience, it can be found in my bio. It was tough at the time going through my experience and dealing with the pain and the scars, but I am extremely happy with my life today.

    Please give us an update if you need any help or have any other questions.

  • CathySueH02
    CathySueH02 Member Posts: 4 Member
    #3

    update: they removed over 3cm diameter section of my scalp and piput in Integra. Biopsy showed a few things. Pleomorphic Dermal Sarcoma. And they have to go back and remove more tissue. They will close with skin graft.
    im healing … for awhile. Pain isn’t too bad at all. It’s getting used to seeing myself with no hair … and making sure my dear friend can handle caring for my wound twice daily. I did invest in some soft cotton beanies. Now I’m going to get some scarfs made for women with cancer … It's an aggressive type of cancer

    Biggest problem now is my insurance … contract with medical group doing cancer treatment and the medical group of my Primary sis not renew. As of November 1st, my treatment for this Medical group providing treatment for my cancer is no longer covered. I’m at a loss …

  • CathySueH02
    CathySueH02 Member Posts: 4 Member
    #4

    Thank you very much. I didn’t think anyone really “heard” me. I did invest in a bunch of those beanies. They’ve been a big help! Now that it seems this will be a longer ordeal that I thought, Immgoingmto get some of those head scarves that fit and look more feminine.

    Thank you for your words and for sharing your experience!

  • apetry
    apetry Member Posts: 3 *
    #5

    I'm so happy you're handling your treatment well! You're going through the hard part now, but it will definitely get better. My treatment was longer than expected too and it can be difficult to have a normal life during this time.

    When dealing with medical expenses related to cancer, it's important to stay organized. Keep a notebook or folder and write down your questions and the information you receive from doctors and insurance representatives.


    For your insurance issue, if you haven't already I would call your insurance provider today and ask them about their "Transition-of-care" policy and also for guidance in this situation. Some insurance providers allow you to stay with your current medical providers at an in-network cost for a short period of time. Usually the transition of care has to be renewed every 2 to 3 months so you can continue seeing your medical provider at an in-network cost. Additionally, you may also have the option to continue seeing your current medical provider as an out-of-network provider though it will be more expensive. Keep in mind, your insurance probably has a max out of pocket amount that is the total amount you will pay for all of your medical expenses for the year, so even if you see an out of network provider, the most you will pay is the max out of pocket amount for that year. With all that being said, you must confirm this information with your insurance provider!


    If this insurance situation seems too overwhelming, you can also request to see a social worker or medical billing specialist at your medical provider's office or the hospital you are being treated at. Not every medical provider has social workers, but they may be able to point you to someone who can help in this situation as this is a common scenario.

    Additionally, if you are employed, your company might have a health advocate program. These programs offer services to you to help navigate insurance issues like this. They usually have a phone number you can call and talk directly to someone.

    You can also call the American Cancer Society and they may be able to help you with this situation too:

    https://www.cancer.org/support-programs-and-services.html

    In my experience, my health insurance company was helpful when I had questions about my treatment. If you ever get a bill you didn't expect or are unsure about the cost of treatment, call your insurance provider. They once sent me a large bill for my surgery, and I called and they informed me they sent the bill on accident and I didn't have to pay anything. Stuff happens

    Let me know if you have any other questions!

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