“I woke up on a pillow covered in my hair.” The husband shaved her head

The diagnosis of “it’s cancer” is shocking not only for the sick person. The disease affects the whole environment: parents, children, relatives, friends, colleagues and colleagues from work. The news that “she has cancer” breeds fear, a sense of powerlessness, and injustice. In this context, the diagnosis of “ovarian cancer” sounds particularly ominous.

1. This is the most insidious of female cancers. It is most often detected in the advanced stage
2. More than half of the cases of ovarian cancer occur in women aged 50–70, approx. 15%. it occurs in women before the age of 50. Even small girls are ill
3. Every year, this alarming diagnosis is heard by 3. 500 Polish women and this number is constantly growing
4. More information can be found on the Onet homepage.

Why is ovarian cancer so often fatal?

The high mortality rate from ovarian cancer is due to its insidious development.

– He does not cause any ailments for a long time – he says in the book «Like a butterfly. Disenchant the myths »dr hab. n. med. Anita Chudecka-Głaz, professor of the Pomeranian Medical University, gynecologist, oncologist. – If we look at three basic, key gynecological cancers: cancer of the cervix, endometrium and ovary, cancer of the cervix makes itself felt, cancer of the body also – there are vaginal discharge, bleeding – and this one [ovarian cancer – ed. Ed.] nothing, sits quietly, ravages and waits. If it led to bleeding, he would have forced the patient to see a doctor. Honestly, even when it starts to make itself felt, women ignore these signs anyway.

Hair on the pillow

The stories described in the book confirm the doctor’s words. Edyta was “healthy as a fish”, strong, she climbed several mountain peaks: Kilimanjaro, Mont Blanc … Pains in the stomach? “It must be from sleeping in a tent,” she thought.

Katarzyna was warned by a conscious gynecologist: “You are doing something on the ovary, please check it”. She went through a hard time with her husband, started a new business, did not return to the office. When the results of anti-cancer markers came back, she did not believe it – she accused the doctors of the failure of diagnostic equipment.

With the realization that “this is really happening” comes the shock: – My mind and body are paralyzed. For me, cancer was death at that point. Judgment. I was just thinking about it – recalls Beata. Today, nine years after diagnosis, she has seven recurrences of cancer behind her. Seven battles with cancer.

– We used to operate all the patients first, and then we gave them homogeneous chemotherapy – explains prof. dr hab. n. med. Radosław Mądry, who heads the Gynecological Oncology Department at the Hospital of the Transfiguration of Jesus in Poznań – We now know that (…) the purpose of the operation is to remove all neoplastic lesions. If we know that it is not possible, (…) we first use a short chemotherapy and only then perform the surgery. (…) If it is possible to completely remove all the disseminated neoplasms – at the same time the ovaries, fallopian tubes and uterus are removed – then the patient who then receives chemotherapy has the best prognosis.

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Cancer cells grow imperceptibly in the ovaries, in the surrounding tissues, or in the fallopian tubes. Then they massively colonize nearby tissues and organs. Therefore, operations take a long time. The surgeon meticulously removes the “scattered like grains of sand” nodules, centimeter by centimeter. If the cancer is “grubbed” surgically and “poisoned” with chemistry, and the markers normalize, a shadow of hope appears. From that moment on, a lot depends on the patient herself and not only on her. Also – as evidenced by the accounts in the book – from the support of the loved ones, from the love of the husband.

– I woke up on a pillow full of hair – remembers Magdalena, who was undergoing chemotherapy – I showed it to my husband and I cried. We went to the bathroom, we tuned Sinéad O’Connor Nothing Compares 2 You. My husband shaved my head and his jointly and severally.

Living with ovarian cancer is measured by the rhythm of regular check-ups. A year of silence, two, three … (for many it’s a “wonderful time”) And then it begins again. Chemistry nightmare, when vomiting lasts for weeks (“I used to go to the bathroom on all fours”, Beata recalls), sometimes you have to “undergo surgery”, cut out more lesions. From relapse to relapse. However, a few decades ago such scenarios were very rare …

– Twenty-five years ago, women lived about twenty-four months after diagnosis. Currently, fifty or sixty months is no longer anything extraordinary, and there are people who live ten, fifteen, twenty years – argues prof. Radosław the Wise.

– Although it is still a very difficult cancer to treat, 15-20 percent of women survive ten years without any signs of disease. This is mainly due to the increasing number of drugs that extend life very effectively.

Prof. Paweł Blecharz, however, does not hide the difficult truth: – Unfortunately, recurrence occurs in practically all patients with advanced stage of ovarian cancer. In all my practice, I remember maybe ten patients who did not develop it.

The latest therapies, however, give reasons for optimism. The oncologist argues that drugs that delay relapse are invaluable. – A tremendous progress, which I have not seen in twenty-one years of my medical practice, has occurred in the last five years. It is associated with the introduction of new molecules, so-called PARP inhibitors – adds prof. dr hab. n. med. Paweł Blecharz, head of the Gynecological Oncology Clinic of the National Institute of Oncology, Krakow Branch.

Inheriting cancer

– We know (…) that women who carry mutations in the BRCA1 or BRCA2 genes and patients whose families have had breast and ovarian cancer in their families have a significantly higher risk of developing the disease – adds Prof. Blecharz. – In Poland, we supervise families from risk groups, thanks to tests, including MRI, we are able to detect breast cancer early. However, we cannot detect ovarian cancer at an early stage. Therefore, in this group, the risk-reducing procedure is surgery to remove the ovaries and fallopian tubes.

Beata, the heroine of the book, admits: – Seven years after my diagnosis, I finally found out that I have a mutant BRCA1 gene. This is the same gene that is responsible for breast cancer. It was because of him that Angelina Jolie had to remove her breasts and ovaries. I immediately persuaded my two sisters and their two daughters to undergo genetic tests in Szczecin. Their results turned out to be positive as well, although one of my sisters delayed the examination and ignored the risk a bit. In 2018, she was diagnosed with third degree ovarian cancer. I know what he is going through now …

– I would urge all women to look around the family, check if any aunt, grandmother or cousin suffered from ovarian or breast cancer.. And if there are any suspicions, they should be genetically tested – argues Dr. Anita Chudecka-Głaz. The finding of a mutation means that the woman has 60 percent. risk of developing breast or ovarian cancer. Then a prophylactic surgery is recommended, which reduces the risk of the disease to 5%.

About 1 percent are found in carriers of the BRCA40 gene mutation. the risk of developing ovarian cancer and 50-80 percent. risk of developing breast cancer in the course of life. Among patients who contracted ovarian cancer, these mutations occur in 15-24%. Each woman qualified for the test may be tested for the presence of the mutation. Qualification for the examination is made by the general practitioner, who conducts a family interview with relatives of 50st-100rd degree. The presence of cancer in the family before the age of 1 or the diagnosis of the mother or grandmother is particularly worrying. The test result allows to classify a healthy woman to the risk group, and the sick people can receive optimal, targeted therapy thanks to it. It is estimated that there are approx. 2011 in Poland. carriers of the BRCA6 mutation. Meanwhile, in XNUMX, over XNUMX were performed. tests for the presence of this mutation, newer data are missing.

Hope and Medicine

Where there is a purpose and meaning in life, as well as effective treatment, it is easier to function in conditions of uncertainty and severe therapy. Women are still driven by passions, but “corrected” passions: mountains, but lower. Own business, but not at any cost. Only love remains unconditional: for the husband, children, grandchildren. To be with them as long as possible.

So is it possible to draw any positives from this tragic situation? From the perspective of a healthy person, the same question may arouse a protest. However, the protagonists of the book argue that ovarian cancer can be a turning point. Now they can do what they have always dreamed of, change the value system, heal their relationships with loved ones, abandon the superfluous and focus on what is most important. According to the carpe diem motto – “seize the day”. – My life has changed for the better – says Edyta, two years after the diagnosis. – Everything we experience builds us up in some way. I wish everyone affected by such a disease to find something positive in it. I am convinced that many women also think: “A lot of good has happened thanks to the disease”.

You might think that an ovarian cancer book would be a history of getting sick. On the contrary: it is a story about “celebrating a wonderful everyday life”, as Ewelina puts it (eight years from the diagnosis), appreciating closeness with the family, about altruism towards those who find themselves in a similar situation. However, this is not a Hollywood happy ending story. “Everything will be fine – you will come out of it” – such a sentence does not appear in this book. The next months and years of life are passed by the patients during check-ups, fights with relapses and… funerals of friends. They also met with ovarian cancer, met in the hospital, in the waiting room, at the meeting of the Blue Butterfly Association, whose president is Barbara, one of the heroes of the book, nine years after the diagnosis.

Warriors of life

The book argues that bravery in the face of disease alone is not enough in the fight against cancer. The life force of seven women, strong and fragile at the same time, is constantly supported by medical supervision and the latest molecularly designed drugs. It is the PARP inhibitors that inhibit cancer growth. – While chemotherapy destroys cells non-selectively, new drugs target specific changes in specific cancers. The great advantage of these drugs is that the patient can take them at home and orally. Another advantage is the favorable safety profile – explains prof. Paweł Blecharz. The specialist emphasizes that the use of PARP inhibitors benefits both women with BRCA1 / 2 mutations and those who do not have these mutations, which is important in the absence of genetic tests in Poland. – We give them to patients after the end of chemotherapy, which resulted in regression of the disease, i.e. remission. They hold her up. You need to take them all the time until the disease comes back. (…) Without this treatment, relapse occurs within six to twenty-four months of surgery. Thanks to new drugs, a woman gains life time, priceless time – emphasizes the professor.

The effectiveness of four PARP inhibitors has been confirmed worldwide, both in BRCA1 / 2 mutation carriers and in a much larger group of patients who are not BRCA1 / 2 mutation carriers. However, in Poland, only one is reimbursed, used in a narrow group of patients with a mutation in the BRCA XNUMX/XNUMX genes, available under a strictly regulated drug program. Unfortunately, in order to receive them, the patient often has to “stand on her head” and reach a good oncologist in a specialized center. – Many hospitals and departments decide not to participate in these programs due to organizational difficulties – reveals prof. Blecharz.

The problem is also that Polish women are not sufficiently genetically tested. At the same time, access to the latest therapies depends on the results of tests for the presence of mutations. As a result, effective treatment with PARP inhibitors is available in Poland only for some patients, despite clinical trials showing that the therapy allows for more than two times the progression-free time in all patients compared to placebo. Therefore, in many European countries, all patients with ovarian cancer are treated with PARP inhibitors, regardless of the mutation of the BRCA genes.

– It was only when I got sick that I did genetic tests and it turned out that I had a damaged BRCA1 gene responsible for ovarian cancer. I suspect my sister also had that gene damaged. Her children got tested and one of her daughters has one. My other siblings, there were five of us in total, also got tested. It is healthy – says Krystyna. Eight years ago she was “put to death”. He lives in a small town where everyone knows each other. People heard about cancer and surgery. They began to express their condolences on Facebook. And she is still alive and infecting with the power of optimism, against all odds – I’m not crying. And I give an example. I say that I live with it, you can. I always tell with a smile, even when something hurts me a lot – says Krystyna.

Unfortunately, in Poland it is still important how much the patient “gets enough”. Ewelina herself, with medical records under her arm, was looking for therapy between Bydgoszcz, Warsaw and Gdańsk. After three treatments, she had had enough. In the end, she “got” an operation in Bydgoszcz. After a nine-hour operation to remove all neoplastic lesions plus excision of the cysts on the liver and the last, fourth chemotherapy, she received 4 years of peace. She only went to the hospital for checkups. In 2018, the cancer returned. The next chemotherapy took place in Poznań. – I have goose bumps when I think how many people are beyond seeking help on their own – says Ewelina. He has tenacity in his blood, he is a sales representative by profession – I live thanks to the fact that I took matters into my own hands – he agrees.

The book «Like a Butterfly. Disenchant the myths. Doctors and patients about living with ovarian cancer »read in the same breath, like a confession of a good friend. A friend who has been hard hit by fate. Nevertheless, she lives life to the full, often discovering its previously unknown tastes, celebrating every moment of everyday life. Lasting thanks to inner strength, love of loved ones, and – most importantly – thanks to oncological medicine and genetics, which offer patients more and more chances for many years of life and activity.

Press material prepared by the Journalists for Health Association as part of the series of expert debates «Live with ovarian cancer. Like a butterfly. True stories », under the patronage of the Polish Society of Oncological Gynecology and the Blue Butterfly Association.