Preparing for Masectomy

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AvaG
AvaG Member Posts: 32

I was recently diagnosed with invasive poorly differentiated duct carcinoma, anaplastic, ER+/PR-/HER2-. Lymph nodes tested negative for carcinoma in a needle biopsy. I had a MRI today and provided that it doesn't show anything new, and it showed that the tumor is closer to 4cm (not the 2cm in the sonogram). They said that I could do lumpectomy followed by treatment, b.) single masectomy or c.) chemo and then lumpectomy. I opted for a MX because the surgeon said that is what she would do if it is her and it seems as though it provides the least amount of radiation and chemo. I am also doing complementary healing modalities- acupuncture, energy healing herbs from Dr. George Wong.

We will know more about the treatment after they analyze the tumor, but I am terrified of treatment. I am 43 years old and otherwise perfectly healthy. I am trying to take it one day at a time but my nerves are threadbare. I am terrified of the pain and the subsequent treatment after the recovery. Has anyone been in a similar situation and can provide stories of encouragement? Also, does anyone recommend cancer mediations that they found helpful?

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  • OnTarget
    OnTarget Member Posts: 447
    edited May 2021

    Hi,

    I was 42 and my ILC was found on my first ever mammogram! I opted for a double mastectomy since my tumor area looked pretty big and my boobs were not large enough to look normal after a lumpectomy. I also wanted those traitors off my chest! :)

    For me, the biggest issue was the stress associated with waiting. I couldn't stand that!

    Everything else was totally do-able for me. The BMX was a relief after all that waiting. The pain was not really too bad. It is only in short bursts- like getting out of bed. OMG! Burning lightning in my sternum for the frist week. I had figure out ways to avoid using my abs a little while! I tried to do as much as I could on my own. I could have woken my DH to help me out of bed, but I wanted to do it myself! It took gumption, but I felt achievement from it. That pain was strong at first, but again, only when I was doing something. Laughing, OUCH. Sneezing, Holy cow, don't do that!

    I think I stopped all narcotics after the first few days and then went on Tylenol/Ibuprofen, plus Gabapentin. I had no pain when I was sitting still, and I also had no energy at first, so laying around was great. It took me about a month to feel normal and energetic again. Gentle walks, and then gentle hikes helped me a lot.

    I opted for chemo after my BMX, and that was not a big deal. Chemo day was long because I cold capped, and I felt sick for a few days after Neulasta, but I basically lived my life. As chemo progressed, I got tired easily, and walking up hills and working in the sun were rough, but it was fine. I was able to do desk work and ride my horse all through chemo, although I sometimes had to ask for help with things when I got tired or too hot.

    The tissue expanders were very uncomfortable, and I blame that on them filling them too quickly. I wanted it slow and they rushed a bit, and it hurt a lot. I have had a subsequent infection, and my second TE was expanded much slower and there was no pain associated with it. If you get a TE, I recommend that as soon as it feels tight you ask them to stop filling. Dragging out the fills can really make it more comfortable.

    Since you are ER+ I assume you'll do either Tamoxifen or OS + AI. I am on OS + AI. It was a pain in the butt for the first 3-4 months. I felt like I was 200 years old. But as usual, I just kept living my life as always, and I feel good now. Don't get me wrong, I have about 10 things I could complain about, but in the overall balance I'm very happy!

    Each of us has a different lens for how we perceive the difficulties of cancer treatment. I sort of take things as they come and try to focus on the next steps. I also find great joy in thinking of how much worse things could be. That makes me o grateful for what I have. My cancer could have been much worse, I could have been hit by a car and be paralyzed, etc.

    Just remember that tons of women have gone through this and there is nothing you can't handle!


  • saltmarsh
    saltmarsh Member Posts: 227
    edited May 2021

    With the usual caveats that everyone's body and experience are different, etc.:

    Having just been diagnosed in March and had surgery in April (single MX), I am here to say that my whole process has been so much less-horrible than imagined it would be. The worst parts for me were the not-knowing, fearing I was going to have to say goodbye to my family, and the waiting for treatment. I did not use the narcotics they gave me after surgery. I used 1/3 the OTC painkiller they recommended and was fine except the times I accidentally moved "the wrong way" -- which takes some figuring out. In my case, they think they removed it all surgically, so I'm just on Tamoxifen, and my experience with that has been similarly good. Not only am I not experiencing negative side effects, but it seems to have stopped the night sweats I had for months.

    I hope you are similarly lucky, and it's not anywhere near as bad as you have imagined, either. Best wishes!

  • AvaG
    AvaG Member Posts: 32
    edited June 2021

    Thank you for all of the responses. The surgery went much easier than I anticipated. I have mild discomfort around the surgical area but otherwise feel fine. The surgeon said that she was conservative and took out 4-5 lymph nodes, which took in the dye. The needle biopsy last week on these nodes came back benign, but I am still nervous for the pathology report.

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