19 March 2018

One more night like this one and I gonna jump out of the window…. Leo is fine during the day, but cries and screams during the night coughing away. My poor baby …. and poor me!!

I am on my way to Prof. Dr. Breidenbach’s practice to get a referral to Haus LebensWert and look forward to seeing Claudia there! I really want my results now!

Despite the fact that it is nearly impossible to get an appointment with Prof. Dr. Breidenbach this week, she actually has time to see me, but does not look happy. She says that the tissue, which was removed around the tumor spots, is cancer free, but the 4mm tumor, which was left, is unfortunately still active – only minimal, but she cannot give me a “Total Remission”. What does that mean? She says that sometimes there are quite large tumors left, but they are pathologically declared as ‘dead’ and that the size of the remaining tumor after chemo does not indicate anything….She is waiting for the last pathological results regarding hormonal status and “then we need to make a decision”. Immediately I am thinking “removal of a breast”, “new chemo therapy”, but she says “how do you feel about doing another chemo … with pills?”…. whatever it takes. She says that this would follow the radiation and that she normally does it with her triple-negative patients (which I almost am, since my tumor was only minimal hormone receptive).

Triple-negative breast cancer (sometimes abbreviated TNBC) refers to any breast cancer that does not express the genes for estrogen receptor (ER), progesterone receptor (PR) and Her2/neu.

Well, I am not happy chappy about it and rather would have liked to have a “Total Remisson”, but it is not the end of the world and compared to other cancer stories, I still consider myself quite lucky. The tumor has been removed and even though it is still active, it is in some petri dish and no longer in my body. The difficult thing is to know that there were still active cells and not to get scared that they might have moved around my body, but then again, there will not be a guarantee for the rest of my life that I won’t face a reoccurrance. The rest of my life will contain close monitoring and cancer hanging over me like a sword of Damocles.

My case will be discussed in next Monday’s tumor conference (I just learned that they are meeting weekly) and I will see Prof. Dr. Breidenbach next Tuesday for a post operation check and to discuss the next steps.

“You do not seem too surprised” she says as we discuss the results and yes, I explain that I had always been a bit disappointed with my results after starting the second kind of chemo – the Paclitaxel (Taxol aka “T”). My tumor shrank after three Epirubicin + Cyclophosphamide chemos (aka “EC”s) from 2cms to 6mm and a few weeks and another EC and some Ts later, it only shrank to 4mm. Everyone said that chemo results are neither calculable nor logical in mathematical terms, but I had the feeling that my tumor did not respond to the Ts that well. Later Prof. Dr. Breidenbach said that there was no longer anything visible on the ultrasound, but the MRI a week prior to my last chemo, stated that there was a 4mm tumor left and Prof. Dr. Warm located it on the ultrasound a few days prior to the operation …. it is all guessing and nothing scientific and does not change the results, but I had these thoughts that my tumor did not respond well and possibly even grew.

I have a coffee with Claudia and her twin sister and make appointments for radiation and Haus LebensWert and go to physio, pick up the kids with Anja and spend the afternoon at the playground meeting some Mummy friends…. and I do not feel like yoga tonight, but will answer all the messages I received today! Thank you so much for all your concerns and support and going on this journey with me! It really helps and means so much to me!!

Onwards and upwards now – I will go to Legoland and skiing (the insurance company called today to inform me that there is no issue with me going to Austria!) and take one step at a time along the cancer road!

4 thoughts on “19 March 2018

Add yours

  1. Dear Alex,

    I know i might be one of the last persons you expert this, but I sincerely would like you to receive my wishes and thoughts of strength and prayers to accompany you along this very hard Road!

    All my positive thoughts sent your way!
    You will make it!

    Liked by 1 person

  2. Liebe Alex,
    auch wenn das Ergebnis leider nicht ganz wie erhofft ist, so hast du bereits so tapfer gekämpft, den Widrigkeiten die Stirn geboten und dich nicht unterkriegen lassen – du wirst auch die nächsten Schritte mit Bravour und uneingeschränkter, seelischer und moralischer Unterstützung deiner Lieben, meistern!
    hug you

    Liked by 1 person

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