When am I considered a survivor?

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LovesPrimes
LovesPrimes Member Posts: 101 Member
edited June 2023 in Breast Cancer #1

I think I didn't look into these boards before because my treatment has not officially begun. I was diagnosed with invasive ductal carcinoma March 22nd and plunged into countless appointments/consultations for a few weeks and now I am waiting for my bilateral mastectomy May 11th.

I lost my sister to ovarian cancer and my mom to breast cancer 18 months apart during my last two years of grad school. Before that, I had lost several, no exaggeration, several aunts to breast cancer as well as my paternal grandmother. Additionally, one of my cousins died from ovarian cancer at the age of 46, the same age my sister was when she died.

There is a BRCA mutation on my dad's side of the family but I did NOT inherit it. Yet, here I am. I call myself a future breast cancer survivor and I am determined to be the first woman in my family to survive cancer. But technically, when will I be considered a survivor?

Also, I have a couple post-mastectomy shirts, a pillow, and a shower lanyard. What else do I need for immediately post surgery and where are the best places to order them?

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  • Tamiann
    Tamiann Member Posts: 23 Member
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    LovesPrime, you're considered a survivor if you've been diagnosed with cancer and are still alive. So - you are a survivor now and it sounds like you are also a fighter which is a key ingredient for long term survival.

    You must be so scared - I'm so sorry you are going through this.

    I did not need a masectomy, so I can't tell you what you will need post-surgery, but it sounds like you have everything I needed after my lumpectomy, other than a very supportive bra. I know you won't need a bra, per se, but you will need something that can provide very strong yet comfortable compression. My hospital provided me with a velcro-close tube vest after one of my biopsies, which was great but didn't work as well as the surgical compression bra they gave me after the surgery, which I wore for about 4 weeks post surgery. I'm not sure where you can get something like that outside of the hospital, but you could search Amazon - they seem to have almost everything. Also, the hospital will probably send you home wrapped up in something that will work temporarily until you can find something more comfortable/suitable.

    I can also tell you to follow all of your surgeon's instructions. I'm sure a masectomy is far more painful than a lumpectomy, but I was very surprised to find out post surgery that I didn't need any pain meds, and therefore I wasn't as careful as I should have been (I didn't limit my lifting as I should have). I am now dealing with a persistent seroma (pocket of fluid in my armpit where my lymph nodes were removed) and lymphodema (lymph fluid build up in the arm/breast) that possibly could have been avoided if I had been more careful. I can also say that it is important to keep your arms moving (not lifting, just moving) as soon as you are able, so the tendons don't stiffen up and cause more pain after you're surgical site has healed.

    Please keep us posted on your progress. We are rooting for you and wishing you the very best. Hopefully they caught this early enough for you that you will, indeed, be the first long term survivor of cancer in your family. 🤞🙏

  • Mstuk7
    Mstuk7 Member Posts: 2 Member
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    Dear LovePrimes,

    I'm sorry that you've lost so many loved ones as well as now being apart of club that no one wants to sign up for.

    I did have a bilateral mastectomy and you're already on track with the things you've purchased. One thing that did help me was a wedge pillow. I have 3 regular pillows but I was worried about slouching, pillows going flat, etc. The wedge pillow helps you sit up which you will be doing constantly after surgery. I found mine on Costco. They sell them at Amazon as well.  Having a front close bra will also help. When I went home I was in one that was super tight and it was awhile before I could remove it. Once I was able to do that though; having a front close bra helped with the drains and getting undressed for when you're able to shower. You may also want wipes. You may not be able to shower fully for awhile and then you can graduate to showering but you can't get your front wet. Wipes will help you feel as close to clean as you can until you can shower regularly.

    Make sure you have plenty of pain medication; whether its what the doctor prescribes or even OTC (Tylenol, Advil, etc.) You'll need to take those before you start feeling any pain. You'll be in bed a lot so make sure you've got a comfortable area whether its in your bed or comfortable chair like a recliner since you're going to be immobile for awhile and then on limited movement. I hope some of this helps for when you're at that stage in your journey.

    GOOD LUCK🙏

  • LovesPrimes
    LovesPrimes Member Posts: 101 Member
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    Thank you, Mstuk7, for the tips. I have now purchased a wedge pillow. I wish I had thought about needing wipes and dry shampoo before the surgery but I got them delivered pretty quickly after and you were absolutely right: I needed that to help feel clean as possible.

    Yesterday, I used a shower head to wash from waist down and that was good but by the time I did all of that, got dressed, etc., I was worn out. Still haven't figured out how to really shampoo my hair and style it. The frizziness and lack of styling how I did before is making me sad. And I don't really want to go to a salon in my current state.

  • Basils
    Basils Member Posts: 14 Member
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    I too come from a family that it is positive for BRCA mutation on my father's side (3 cousins, 2 aunts, 2 uncles and my grandma) and I was NEG! And I've also been diagnosed with IDC at age 43. I find it so bizarre.

  • Widdershins3
    Widdershins3 Member Posts: 8 Member
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    One very simple basic thing made my post-double-mastectomy time much more bearable--a really soft, cuddly throw that my best friend gave me in lieu of hugs, since she lives far away. I got these weird chills that I had trouble warming up from, but that soft little blanket, wrapped tightly around my upper body, was amazing.

    And now that the cancer's back and in greater numbers, I got a cool thing called a towel warmer that the chemo nurses recommended, plus a simple cotton blanket. It's amazing the amount of comfort that warmed blanket provides. I still get cold much more easily than pre-cancer times, but it's not so much the chills anymore, it's just the sinking-into-comfort that the warm blanket provides. Plus, my cat absolutely LOVES it and I get serious snuggles when I curl up with my "blankie" :D

    Cancer sucks, but if you can find something that comforts you, go for it. Use it as often as needed.

  • jpallone
    jpallone Member Posts: 4 Member
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    I was fortunate enough to be able to shower the next day after my bilateral mastectomy 8 days ago. I suggest you to not worry about your hair appearance because you've been through enough that I'm sure your family and friends love you just as you are. After losing my hair, it's finally just growing in; gray, black and white! Someone might mistake me for a kitty! I wish you a speedy recovery : )