Advice to a New IBC Sister

Here are my two cents for a newly diagnosed IBC sister:

1) Get the very best medical care possible
This isn't a disease your local community hospital oncologist is probably going to be able to handle. While going to a local physician is perfectly fine for most forms of breast cancer, IBC is rare, and so it is unlikely your doctors have seen many (if any) cases of IBC. The latest research doesn't necessarily propagate to all doctors, so they might not be aware of the latest research available and best practices for treatment.

If you can travel to one of the top cancer centers it might make the difference between you surviving or not. There are a lot of charities that help people that don't have the resources to travel to these centers. If you can't get to one of the top cancer centers, at a minimum go to an academic center that conducts research and will be up to date on the latest science. You need someone that knows what they are doing with this specific disease.


2) Get your head in the game

You can feel sorry for yourself, spend your days in bed, and cry all the time- or you can double down, and put your game face on, ready to battle this disease. Cancer, breast cancer, and especially inflammatory breast cancer is not for the faint of heart. Cancer is out of your control- there is nothing you can personally do to stop it (the sooner you come to terms with this, the better). The only thing in this situation that is under your control is your attitude. You can choose to have a pity party for yourself and feel miserable or you can choose to make the very best of your situation. Take it from me- you are going to be way happier and people are going to want to stick around longer if you do the latter.

Note #1: It is impossible to be positive all the time, and probably not good to live in a world of denial. Allow yourself space to be down, but try not to stay there for long.

Note #2: There is NO shame in getting on an anti-depressant while treatment. When I was diagnosed pregnant at age 29 with a toddler to take care of, the doctors practically forced me to get on them. Someone once told me they are like a chair- they won't lift you to the roof and make you super happy, they just keep your butt from hitting the floor.




3) Take care of your body
Your body is about to go through hell and back. Everyone's experience with treatment is different. I think a lot of it has to do with your health before cancer and your outlook. You can't change what you've done to your body before now, but you can change how you treat it through treatment. Obviously listen to your seasoned nurses and doctors first on this, but what helped me was:
a) Exercise
I know you are tired from chemo/sore from surgery/exhausted by radiation- I don't care. It is a cyclical thing- you work out --> you have more energy --> then you can go and walk again. You stay on the couch --> you don't have energy --> you stay on the couch. Get up! Walk just two houses down and back. Then just around the block. Then a mile. You'll be surprised what your body can do! 
b) Diet 
You need to fuel your body to fight your cancer with a well balanced diet. I'm not a dietitian, but there is probably one at your cancer center that can help you with a personalized plan. The short story is you need a lot of protein (like 50% more than normal), fruits and veggies (be careful of raw when your counts are low though!). IBC is typically associated with having a higher BMI so eating well might not be what you are used to. Make a change in your diet so you can feel your best to fight!

c) Hydrate 
This shirt is my daily uniform.
Drink water. It will make you feel better (with or without cancer!) :-) 
4) Get a support system
There is no way in the world you are going to get through this journey all by yourself. It will take an army of people to make it through. The sooner you realize you can't do this on your own, the better. When people offer to help (and mean it) take them up on it! I can't tell you the number of people that have done my dishes, laundry, watched my kids, driven me to chemo, made me dinner. It is all super humbling- but who doesn't need a little humbling now and again?

5) Join the IBC community
This is a tough disease with a tough road, but it can be easier getting support, education, and encouragement from women that have been there before. There are several active facebook groups online you can request to be a part of. We have IBC meet-ups in various cities across the US. There may even be someone in your area that is an IBC sister that you can connect with in person. Remember that you are never alone- the IBC sisters love you and want to support you.




I'm so sorry that you are going through this and that you've been dealt this crummy hand of cards. Remember though, you are not a statistic- you are an individual. Many women beat this disease- no reason YOU can't be one of them. <3

11 comments:

  1. I am so sorry you and your family are going through this. Y'all will be in my prayers!

    I found your blog as I was searching for information on IBC. Two weeks ago my daughter was diagnosed with Stage 3 IBC. That was until the full body scan came back. She was then put at Stage 4 Metastatic IBC. Because she is 36 they told her that she should go ahead with the treatments they had talked about at Stage 3, with chemo starting yesterday. They said they would keep her on chemo for 5 months and halfway through do another full body and head scan to see if there were any changes. At the end of 5 months they would do another full body scan and then do surgery unless the cancer had stayed the same or spread.

    Even though it is not curable, there is always hope! Hope for my daughter, her husband and two young boys. God is still in the miracle business! I pray that both my daughter and you and your family will receive the blessing of that miracle!!!

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    Replies
    1. praying for your daughter, too! God isn't intimidated by cancer. He is Sovereign & He is FAITHFUL! Keep believing, keep praying. Prayers put our hearts into motion in the heavenlies!

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    2. Beth, I was told I had liver and brain mets based on a PET scan. I went to MD Anderson who ruled out brain mets with MRI. However it still showed up a liver tumor on MRI. Then the liver biopsy was negative! I have invasive ducal carcinoma. Prayers for your daughter!
      I am praying for your daughter.

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  2. You are one of God's amazing gifts to us all!! Keep you head held high. I was just diagnosed with IBC stage 3, 34ys old, married with 3 kids (6yr old, 2.5 yr, 6 month old. God will help me beat this. I believe and give myself to him.You are inspirational!!! Xoxoxo

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  4. I would like to introduce myself, I am Sarah a french student in communication and i am writting to you to know if that is possible to ask you some questions by Skype or mail about your Cancer blog.
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  5. I was diagnosed with IBC in my left breast 3 years ago on 5 Sep 2012. I was so terrified by what I read online that I went full bore into the recommended treatment. Five months of chemo followed by modified radical mastectomy of the left breast and a mastectomy of the right breast. Took over 4 months to heal on the left breast, but eventually underwent radiation. Had a metastatic scare with a tumor on the T3 vertebrae, but it biopsied negative. My oncologist and radiation oncologist insisted it was cancer and obliterated it with SBRT, then monthly injections of Faslodex and took Ibrance for 5 months. My oncologist of 3 years was just gone in July with no notice to me, and the staff all say "she retired". Now the new oncologist is saying he doesn't think I actually had IBC. Breast cancer, but not IBC. I have had so many mixed up feelings through all of this, and no one I have told this to seems to think it's a big deal. The new oncologist just said something to the effect that he knows I've been through a lot, but I just have to move forward. I think oncologists should be required to have newly diagnosed cancer patients get a second opinion. I was so scared when diagnosed, I pushed for treatment right away and followed all the recommended treatment. Came through it all relatively well, but I have such mixed up feelings. Was it all for nothing? I have problems caused by the surgery, and I have scarring in my lungs from the radiation treatments. I think I need to speak with the patient navigator at the cancer center.

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  9. Hi could you personally email me. i have a few question?? Some like what made you be seen? also some regarding what my body is doing and doctor has set fourth. We are dealing with unanswered questions and concerned until Monday when i have a ultrasound done I am 34

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