As of: February 5, 2024, 11:41 a.m
By: Natalie Hull-Deichsel
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Lung cancer is often inevitably associated with smokers.
There are tumors that particularly affect non-smokers - like Eva and Julia.
“Of course the first question is always whether I smoked.
Doctors also ask this question.
You should actually know that smokers are usually very old when they get lung cancer.
The question always implies: It's your own fault for your cancer.
Unfortunately, these prejudices prevent us from dealing with the disease without shame.” What Julia H. from Düsseldorf describes is something that many lung cancer patients experience when they become ill at a young age.
This makes it all the more important for her to talk about the illness - just like Eva L., who lives with her family in Krefeld.
Both talk exclusively in an interview with Ippen.Media about which symptoms led them to the doctor, how the diagnosis was made, which treatment option works for their tumor and how they live with the disease today.
Lung cancer at 38 and 46: Which symptoms led Julia H. and Eva L. to the doctor
Eva L. (left) and Julia H. (right) met through a common fate: lung cancer.
Both women use their illness as an opportunity to help others.
A joint book for parents and children is scheduled to be published in 2024.
© evaleroy/juliamittelstaedt/roche
Julia H. is 38 and in the middle of her wedding preparations when, in 2016, she suddenly felt a kind of pressure in her throat and noticed a noise when she breathed in and out.
After about a week and a half, she goes to the doctor because the symptoms seem “strange,” as she describes them.
In 2019, Eva L. noticed dizziness, which she initially attributed to the excitement of moving with her husband and her then seven-year-old daughter.
When it became even more difficult for her to breathe and felt like she was “being through a handkerchief,” she went to see her family doctor.
After the examination, it is initially assumed that there is a flu-like infection.
But her cough doesn't go away and is ultimately accompanied by bloody sputum - so she is referred to a pulmonologist.
I just had a strange feeling.
Eva L. after she went to the pulmonologist with her symptoms
With suspected atypical pneumonia, Eva L. is immediately treated at the Helios Hospital, where the doctors also carry out various examinations, including chest X-rays (computed tomography) and lungoscopy (bronchoscopy).
A tissue sample (biopsy) is taken as standard.
Examinations that Julia H. had already had to complete at that point.
And the results were already available – four days after their wedding.
The tissue sample not only showed the growth of a malignant tumor in Julia H., Eva L. also received the shocking diagnosis after her examination: lung cancer, so-called non-small cell adenocarcinoma, in an advanced stage.
The tumor had already spread or metastasized in both patients.
"A shock.
A feeling of powerlessness.
You can't believe it at first.
We cried a lot,” says Eva L., describing her first feelings after the diagnosis and the reactions within the family.
And Julia H. remembers that she felt “numb” for a few weeks after speaking to her doctor.
I went straight from this: The cancer has metastasized, brain metastases, now you only have a short time left.
Julia H. about the thoughts that came to mind when she was diagnosed with cancer
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What both appreciate and emphasize is that their treating pulmonary oncology specialists did not initiate chemotherapy directly, but rather had the tumor tissue examined for further analysis.
Because the classification of the type of lung cancer is crucial for the appropriate therapy.
In the case of Eva L. and Julia H., the result of the subsequent tumor tissue examination actually showed: ALK-positive (ALK+) bronchial carcinoma - a type of lung cancer that occurs especially in younger, non-smoking patients with good general health.
And thanks to new therapy, this type of cancer can be treated in a targeted manner - without chemotherapy.
Two tumor groups in lung cancer
According to
the German Cancer Research Center (DKFZ),
there are different forms of lung cancer.
Based on their characteristics, tumors and carcinomas are divided into small cell lung cancer (SCLC) and non-small cell lung cancer (NSCLC).
Around 80 percent of all lung tumors are NSCLC carcinomas, which have various subtypes - one of which is ALK-positive.
This form is characterized by genetic changes in the cells (so-called oncogenes), which then lead to cancer.
ALK-positive lung cancer occurs in approximately 5 percent of all lung cancer patients with non-small cell lung cancer.
It is not yet known what causes the change in the ALK gene.
With the help of research and targeted therapy, ALK-positive lung cancer could in the near future become a type of chronic disease that patients can live with relatively well.
ALK-positive lung cancer: What does targeted therapy mean?
Julia H. doesn't forget the moment when she was informed about the results of the tissue sample.
The ALK mutation “made targeted therapy possible.
The doctor at the Florence Nightingale Hospital in Düsseldorf was so happy.” Until now, Julia H. and Eva L. have been receiving therapy with targeted medication in tablet form.
“You then saw that parts of the lungs were free again and there were fewer parts of the tumor,” explains Eva L., explaining the positive effects of her therapy.
From her point of view, it is important to find out all about the disease after diagnosis and to contact a lung cancer center or the national network for genomic medicine for lung cancer (nNGM) so that patients can also know the treatment options.
Non-small cell lung cancer (NSCLC) – targeted therapy with kinase inhibitors
Targeted therapy is an option for patients with advanced non-small cell lung cancer (NSCLC) whose tumor cells have specific target structures.
For the treatment, groups of drugs such as so-called kinase inhibitors are used, which block relevant signals from the crucial enzymes (kinases) in tumor cells, for example anaplastic lymphoma kinase (ALK).
The enzyme anaplastic lymphoma kinase is rarely active in healthy cells.
However, there is above-average activity in lung tumors, which promotes uncontrolled growth of tumor cells.
According to the German Cancer Research Center (DKFZ),
these “ALK-positive” lung cancer cells can
be slowed in their growth by certain medications, such as ALK inhibitors.
Targeted therapy for non-small cell, ALK-positive lung cancer can even stop the formation and progression of brain metastases, as a study cited by the
German Cancer Society (DKG)
shows .
Scientists are developing more and more targets for targeted therapies, particularly in non-small cell lung cancer.
Medications such as vascular growth inhibitors are used.
On the one hand, these block signaling pathways that are important for the division and survival of cancer cells, and on the other hand, they prevent the supply of oxygen and nutrients to tumors.
Living with lung cancer: A common project of the heart emerges from one fate
Every therapy can also have side effects - for Eva L. and Julia H., the targeted cancer therapy shows, among other things, tiredness, fatigue, body aches, severe difficulty concentrating and increased cholesterol levels.
Nevertheless, both women, who met through the Facebook group “ALK Positiv Deutschland” and have now developed a good friendship, find the energy they need to dedicate themselves to special tasks such as the joint book project for children.
“We live in the moment, in the here and now.
“We are now doing what we can and what we enjoy,” says Julia H., describing her personal attitude since the diagnosis.
Both trained educators enjoy working on the children's book together, for which Eva L. had the idea.
She also designed the included picture illustrations and Julia H. wrote the texts.
Both have experienced in their environment how parents often lack the ideas and words to talk to their children about cancer and their new life situation.
How do those affected and their families cope?
What ideas are there about the future, about death, about dying?
And is there hope?
If yes, which?
These are the questions that our picture reading book revolves around.
Julia H. on the concept of picture books for children and parents to deal with cancer in the family
Julia H. and Eva L. deal openly with their illness and would like to encourage other sufferers to do the same.
The book is recommended for five to twelve year olds and will be available free of charge in 2024 through the Federal Association for Self-Help Lung Cancer.
V. be available.
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ALK mutation can also cause other types of cancer
In addition to lung cancer, the defect in the ALK gene can also cause pancreatic cancer or neuroblastoma in children.
Targeted therapy is also possible for pancreatic cancer and also shows positive results for children with cancer with ALK-positive tumors.
“Promising results were observed in some of the neuroblastomas, which belong to a prognostically unfavorable subgroup of this cancer type,” explains Univ.-Prof.
Dr.
Matthias Fischer, Head of the Department of Experimental Pediatric Oncology at the University Hospital of Cologne.
This article only contains general information on the respective health topic and is therefore not intended for self-diagnosis, treatment or medication. It in no way replaces a visit to the doctor. Our editorial team is not allowed to answer individual questions about medical conditions.