That one thing you wish you’d known before surgery that you found out later

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  • Sunny5
    Sunny5 Member Posts: 147 Member
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    A list is the best thing to do! That way you won't forget anything. Also my oncology team told me to always call them if I thought of anything when I got home to ask. Does your cancer center have MyChart? It's a great way to communicate with your team. All the hospitals around here have it. I'm in western KY.

  • ldebauch55
    ldebauch55 Member Posts: 9 Member
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    Yes they do. I've been so overwhelmed trying to process everything that is being offered,I can't think at times I just stop and breathe and take a break. My biggest concern is taking hormones for 5 years. I'm looking into homeopathic and other remidies. I praying for a complete healing and believing I'm cancer free. I hope to be back here in Oct with a praise report. Regardless,I'm going to do my best to take each day as it comes.🌿🙏🔥🌿🙏🔥

  • Truckincrazy1
    Truckincrazy1 Member Posts: 95 Member
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    You are more then welcome. To be honest I didn't know if I should answer you. Then I remembered back in March of this year when I went for a PET scan for a nodule on my lung the doctors were like, hey great, lung is fine but guess what we found? The bottom of my world fell out from underneath me. I was terrified, I have cried gallons of tears. I researched, joined FB groups, many I left as they scared me. DR google, spoke to doctors, friends, Cancer Society, therapists and more google. I am now cancer free and I am glad I made the decisions I made. I am so happy that I can now help someone. I know exactly what you are going through. Please do NOT LET FAMILY OR DOCTORS or anyone tell you what you should do. I'm a wimp and I do let people boss me around, not this time. This is something you have to live with and only you, I can't stress that enough. Prayers for strength to you.

  • Sunny5
    Sunny5 Member Posts: 147 Member
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    I will pray for God to lead you to the right decision for you!

  • ldebauch55
    ldebauch55 Member Posts: 9 Member
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    Thank you . I sincerely appreciate your support. Stay well and God bless🙏🔥🙏🔥

  • Truckincrazy1
    Truckincrazy1 Member Posts: 95 Member
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    @Idebauch55 I am with you on the homeopathic approach, please look into Zero Balance, and see if you can find a practitioner in your area. Google the founder and the history of this amazing therapy, I was a changed person after my session.

  • ldebauch55
    ldebauch55 Member Posts: 9 Member
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  • Truckincrazy1
    Truckincrazy1 Member Posts: 95 Member
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    No thanks needed!

  • jlk301
    jlk301 Member Posts: 5 Member
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    In hindsight, I wish I would have had the results of the genetic testing I had opted to do prior to my lumpectomy. The oncologist would not see me before having surgery and the surgeon said the oncologist would do the genetic testing. Having never gone through this before, I listened to the docs and didn't insist on genetic testing pre-surgery. Had I insisted, I would have found out I have the BRCA2 gene and would have had a bi-lateral mastectomy instead of a lumpectomy. I wish you all the best!

  • Truckincrazy1
    Truckincrazy1 Member Posts: 95 Member
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    I don't understand. Why would having the gene make a difference? My insurance wouldn't cover it, and I am out of work. I had a lumpectomy, Tumor was in situ, did no spread, margins were clear and so was the one lymph node. I had a PET scan and no node lit up on scan on the tumor did.

  • jlk301
    jlk301 Member Posts: 5 Member
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    For me, knowing about my BRCA2 mutation prior to surgery would have resulted in my choosing a risk-reducing mastectomy instead of a lumpectomy.

  • Truckincrazy1
    Truckincrazy1 Member Posts: 95 Member
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    Well I don't know if I have the BRCA2 mutation. I do know when the doctor said INVASIVE TRIPLE NEGATIVE, I thought omg that is a death sentence. I had a lumpectomy, margins are clear and no lymph node involvement, tumor was insitu, did not spread. The doctors scared me into thinking I needed chemotherapy since my cancer would not respond to hormonal treatment and radiation would not be enough. I refused chemo. I have now learned that hormone treatment is very hard to cope with and my family health provider told me that is a good that I was triple negative an that it was not a bad diagnosis. I am pleased with my decisions. I can't stress enough that we the person with cancer must do what WE feel is best for us. Go with your gut, research, learn, ask questions!

  • jlk301
    jlk301 Member Posts: 5 Member
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    There is no one answer for treatment of cancer. Advocating for oneself is a must. All the best to you!

  • jajmom
    jajmom Member Posts: 33 Member
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    Although I believe my care team was very informative prior to surgery, I was completely taken off guard by phantom nerve pain in my arm pits and on my breast area. I had a bilateral mastectomy, sentinel lymph node biopsy and immediate start to reconstruction (skin expanders). The burning and pain was pretty bad, but when you look at the skin there is nothing really irritated. I was also surprised by the amount of numbness post surgery. Good news is, the nerve pain diminished after about a month post surgery but the numbness has remained (July surgery).

    Research and asking questions, anything, is the best way to get informed. I wish you the best with your surgery and treatment plan.

  • Sunny5
    Sunny5 Member Posts: 147 Member
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    I also have pain in my arm pit and my breast is still sore and a little swollen. I finished chemo April 1st, surgery May 16th, and radiation August 1st. But the dr. assured me this is normal, so I guess it just takes a long time to heal. Of course, I had a lumpectomy and not a mastectomy. The back of my arm is still numb, too and I still have neuropathy in my fingers and thumbs. I hope it all goes away for both of us. Prayers!

  • Denial45
    Denial45 Member Posts: 2 Member
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    How much I had to change out my drains and watch them . You have to really take good care with cleaning. Everything turned out fine. Good thing my son was very helpful.