I Have Not One, But Two Scary #BreastCancer Diagnoses and Feel Like I’ve Been Diagnosed All Over Again…

20150213-20150213-DSC_6458

“The only courage that matters is the kind that gets you from one moment to the next.” 

~Mignon McLaughlin

It’s hard enough to be diagnosed with cancer at the age of 45 when no one in my family has had it and I get routine mammograms every year. Then on top of that to be told you have Triple Negative, a rare and aggressive type of cancer with a higher chance of recurrence. Then, as if those two things were not enough, you’re told that you also have Metaplastic Carcinoma.

I don’t know why it took me two-and-a-half weeks to process this information, but I just realized today that I have been diagnosed with not one scary thing, but TWO. I have Triple Negative, which is only found in 15-20% of women with breast cancer AND I also have Metaplastic Carcinoma which is only found in 1% of women with breast cancer. ONE percent.

Not even a nurse at one of the biggest cancer centers on the East Coast has heard of this. “You mean metastatic” she asked me when I called to speak with the doctor today after an emotional breakdown. “No, it’s called Metaplastic.  Metastatic is Stage 4. I only have Stage 1 but it is called Metaplastic and only found in 1% of women with breast cancer.” Yes, I was actually educating the nurse on this rare disease.

To say that I feel like I was kicked in the gut upon realization of this is putting it mildly. The reason it struck me now is because I found another lump, my third in less than a month, under my left arm today. I was Googling, which you should never do, while waiting for the doctor to call back and stumbled upon some disturbing information about Metaplastic Carcinoma. The doctor said the lump is probably a swollen lymph node like the last one they found last Wednesday, but my PET Scan was clear, so I “shouldn’t worry”…..easier said than done.

Triple Negative means that the cancerous tumor, which they cut out of me on Feb. 17,  is Estrogen, Progesterone and HER2 negative. Triple Negative can’t be treated with “normal” hormone suppressing medication because the cancer is not fueled by hormones. (Cancer.net)

Metaplastic Carcinoma is a type of cancer. There are women that have Metaplastic Carcinoma that are not Triple Negative but 90% of women with Metaplastic are Triple Negative as well. Metaplastic is not to be confused with Metastatic. Metastatic is Stage 4 cancer. Mine is only Stage 1. Metaplastic is a completely different type. No wonder my brain did not accept all of this information at once when I was told on Feb. 23. It is all a lot to take in and very overwhelming.

A woman in one of my support groups said that her oncologist told her the survival rate for Metaplastic Breast Cancer (MBC) is the same as for other types of breast cancers so that’s what I need to focus on.

I’ve been told I will have good days and bad days…today was definitely a very bad day. I don’t feel positive or strong or brave. I feel alone and frustrated because I don’t have a lot of information. I was also told I have every right to feel these feelings and so I won’t feel bad even though one person told me I am being “negative.” One out of 100 that said I am “positive, strong, brave and inspiring.”
 .
And also- Really? You try being diagnosed with a rare and aggressive life-threatening illness and tell me how positive you feel 100% of the time. You try staying calm and putting on a happy face in front of your kids. You try finding three lumps in less than a month and tell me how positive and calm you feel. You try thinking about being injected with a powerful poison, losing ALL of your hair for a year, feeling exhausted and sick and tell me how super-dee-duper you feel…..with 5 dental visits in one month, 6 cavities and once tooth extraction thrown in for good measure. You try dealing with the fact that you will lose three or more months of income because your medical leave doesn’t cover this long of a treatment period. I think one bad day out of 51 since finding the lump is pretty good. That means I have been positive 99% of the time….if my math is correct….but my brain huts now so I can’t think about it too much.
.
I asked my doctor is she has ever treated anyone with Triple Negative, she said yes, many. I asked her if she has ever treated anyone with Metaplastic Carcinoma. She said yes. She also told me that I should “try to relax and get off the internet for the weekend.”
 .
I am going to listen to my doctor’s advice. I am also going to focus on the good– that it was caught early and it has not spread.  I am going to go to church. I am going to binge-watch a bunch of Disney movies, spend time with my family and prepare for my next treatments…..
  • Port placement for chemo, one-day surgery, Monday, April 6
  • First chemotherapy, Thursday, April 9, every other week for 16 weeks
.
“The most important thing in illness is never to lose heart.” ~Nikolai Lenin
.
 .
Photo: Alan Barry Photography

8 Comments (+add yours?)

  1. Shari
    Apr 09, 2015 @ 08:43:29

    Hi Wendi, I just found out that I also have metaplastic tn. I’m terrified and trying not to dwell on the negative but it’s hard. I was first diagnosed jan. 2013 with tn. Had neoadjuvent chemo (Achieved PCR) lumpectomy with good margins and radiation. Two years later I found a local recurrence. Mastectomy with immediate diep March 10. Pathology back indicating invasive as well as metaplastic. I meet with my oncologist wed.
    Can I ask if in your research you have learned of current chemo protocols? Everything I’ve read seems to indicate a lack of protocol for metaplastic- I’m terrified.

    Reply

    • wendipoprockct
      Apr 09, 2015 @ 23:55:31

      Shari- I’m so sorry we have this horrible disease in common but glad you found my blog so I can direct you. First thing- try to focus on the positive. I know it is hard but stress is really bad for your health. Second- find a GOOD support group. If you’re on Facebook, search “Metaplastic Breast Cancer Research and Information.” There you will find 437 members from all over the USA who are fighting this battle together, armed with love, support, knowledge and encouragement. Here is the link: https://www.facebook.com/groups/metaplasticBCresearch/ Feel free to email me anytime if you have any questions or just need a pep talk. I’m here for you! 🙂 wendyannmitchell@live.com

      Reply

      • Shari Visser
        Apr 10, 2015 @ 08:10:45

        Good luck on your chemo Wendi! I did just join Facebook so I could join the site you recommended. I’m soaking up all the love and support! My oncologist called me yesterday and we had a good talk- feeling a bit better but still afraid of the battle ahead. Again.
        May I ask what chemo your on? I’m still not sure about doing platinum and would love to get an idea how other oncologists are treating this.
        Thinking positive thoughts for minimal side effects for you, thank you so much for your response- I was totally blindsided by this recurrence and then to find out it was metaplastic was more than I could handle. We will get through this!
        Hugs, Shari

        >

      • wendipoprockct
        Apr 10, 2015 @ 16:57:17

      • Shari Visser
        Apr 11, 2015 @ 08:46:12

        Morning Wendi, I hope your first chemo went well. I started following you on Instagram – my username is sharviss I have my setting to private but if you want to follow me I will definitely approve!
        I’m not sure if you are aware of taking Claritin to help offset the bone pain from neulasta? I believe your suppose to take it one day before and 2 after chemo. I tried it but it didn’t do anything for my pain but there are a lot of women who swear by it. I found I had bone pain starting exactly 2 days post chemo and lasted for 3. Morphine pills didn’t touch it, I truly hope you don’t experience it- I think my experience was severe and not indicative. Just a heads up to watch what you plan days 2-3.
        Don’t forget to drink lots of water to help your kidneys blush the chemo.
        Wondering if you have read any research by Valter Longo on fasting prior to chemo? Very interesting concept- I’m going to run it by my oncologist- anything I can do to wipe out this nasty I’ll try- plus apparently it has the added bonus of reducing side effects. Not sure she’ll let me do it but….!
        Wishing you well my sister warrior!
        Hugs, Shari

        >

      • wendipoprockct
        Apr 11, 2015 @ 18:50:17

        Thanks Shari! Yes, my doctor said something about Claritin but wanted to wait to see how I do with the first shot to see if I have any side effects. So far so good. Just pretty nauseous today because I slept past the time I was supposed to take the meds.

    • wendipoprockct
      Apr 09, 2015 @ 23:59:01

      P.S. Sorry for my delayed response- had my first chemo today. I also have Invasive plus Metaplastic. I got a second opinion at Sloan Kettering and they said they treat Metaplastic with chemo and check 3-6 months for 5-7 years after to make sure there is no recurrence. Here is some more information: http://www.metaplasticbc.com/chemotherapy/

      Reply

  2. wendipoprockct
    Apr 10, 2015 @ 00:18:43

    Here is another good site (Cancer.net) that states: “Adjuvant therapies for metaplastic cancer include chemotherapy and radiation therapy. Although adjuvant therapy lowers the risk of recurrence, it does not necessarily eliminate all risk.

    Treatment options and recommendations depend on several factors, including the stage of cancer, possible side effects, and the patient’s preferences and overall health.

    Metaplastic breast cancer is treated in the same way that other types of triple-negative breast cancers are treated. It has been suggested in multiple studies, however, that a woman’s prognosis is related to a combination of factors, including the size of the tumor, the number of positive lymph nodes under the arm, and the tumor biology as determined by molecular tests.”

    http://www.cancer.net/cancer-types/breast-cancer-metaplastic/treatment-options

    Reply

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: