– I was pregnant with the third child and I breastfed the middle one. While I was on a trip to Oslo, I noticed that I had blocked the milk duct.
This is what Silje Morild Helland (37), who lives in Arendal, tells Dagbladet.
When the son stopped breastfeeding at the beginning of July 2015, the lump had not disappeared.
At a regular routine check-up for pregnant women, Helland told her GP that she had a lump in her breast. The doctor felt after and thought that she should be examined.
– Then I was pregnant in week 36. They thought that the lump was so pronounced that they thought I should get an hour quickly.
The case was first mentioned by Grimstad Adressetidende.
– Did not look promising
In Kristiansand, Helland met a surgeon. They took ultrasound, mammography and biopsies of the bullet.
– It was absolutely cruel. On the way there, it felt like I was going to get sick. I was prepared for an answer that was not so positive, says Helland.
The surgeon and a contact nurse sat down with Helland and said that they did not think it looked promising.
– I remember thinking that now life can be different. I also saw in the expression of the contact nurse who was there that it seemed very bad. She had a very caring expression.
SUMMER: Silje Morild Helland (37) on the beach. Photo: private
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– Blackened for me
Two days later, while Helland was shopping at Coop OBS with his family, it rang from the hospital.
– I remember exactly where I stood. I remember just talking to my sister and wanting to sit down because I was so tired. The phone rang and I got up. It was the surgeon himself who called and said that it was not good news and that I had cancer. I tried to ask what kind of cancer it was, but he only said that it was a common type of breast cancer, she says and continues:
– I told my husband that we had to leave. When we got to the checkout it turned black for me. I had to squat. I did not cry, but I felt like I was attending my own funeral. First out in the car I was told what the doctor had said.
“I should have listened to you, Mom”
At the hospital four days later, they started the birth. After a subsequent examination, she was told that the breast cancer had not spread, but they had found cancer in a lymph in the armpit as well.
Helland was only allowed to breastfeed her daughter for a week, before she had to stop to start chemotherapy. Then the baby was nine days old.
She later underwent surgery to remove the tumor and thirteen lymph nodes under her arm. After this, she received radiation for about a month.
– I had a baby and two small children at the same time, the oldest was three and a half, so it was difficult, but at the same time very safe and good to have them there. The family is the security of it all.
Helland lives in Sørlandet with her husband and three children. She was born and raised in Kragerø. Photo: Private
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Started the dream studio
Helland, who was originally trained as a hairdresser, struggled to use his arm after the operation. When she recovered after a year and regained some of her energy, she began to study again. She first started on a preliminary course for engineering education.
Three years ago, the same day she started her dream studies, she received another disappointing message.
Helland had struggled with back pain for over half a year. When she had returned home from her first day at the University of Grimstad, it rang from the hospital. They said they had found cancer in her skeleton.
The 37-year-old has metastatic breast cancer. This means that cells from a breast cancer tumor have spread to organs outside the breast in question and nearby lymph nodes.
– I die while arguing
– I asked them if you ever get well from it. They said no, says the 37-year-old and breathes heavily.
– It was a hard message to get. You know that life will change and may never be the same again.
Helland met her husband in the driveway outside their house, when he came driving with the two youngest home from kindergarten. She met his gaze through the window of the car and shook her head.
– I think I started by saying sorry, it’s cancer, I can not get well, says Helland.
Helland’s husband gave her a long hug and they cried together.
STUDY: – I have always wanted to be an architect, says Helland, pictured here with his youngest daughter. Photo: private
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Stain on the liver
Helland started a new round of radiation to get pain relief.
– At the hospital, they said that I could not get well, but I could live longer with the treatments we have today.
Since then, Silje has changed medication and had periods of some pain.
She has spent a lot of time searching for solutions and new treatments.
– The treatment I am going on now does not work optimally. I notice that I am in more pain, she says.
After a six-week wait, Helland recently received a response to an MRI examination.
– The answer showed that I also have a spot on the liver, which is possibly spread there. In that case, I have to change medicine now, if new MRI images confirm the suspicion.
She is worried that she will no longer be eligible for a new study if she starts chemotherapy now.
The last conversation: Revealed everything
Hoping for new medicine
The mother of three hopes, among other things, that the two medicines, Tukysa and Enhertu, will be approved. In the new year, a study with Enhertu will start.
Enhertu has been under assessment at the Decision Forum since last year, while Tukysa is still being assessed by the Norwegian Medicines Agency.
– Even though the doctors have said that it is not possible to get well, I do not believe in it, as the development in cancer research is today. If I manage to live long enough, I also manage to get well, because development is so fast. Others have recovered, so I should be able to do the same. The only difference is that they live in another country, Helland claims.
Therefore, she created a Spleis a few weeks ago, where she asks for help to afford treatment that has not been approved in Norway yet.
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The hope is that she can buy Enhertu privately, while saving up for cell therapy abroad.
– My children should have a little more mum here! I want to live for my kids first and foremost. There are so many things I want to do.
Helland also wants to fight for “fellow sisters”, who also suffer from metastatic breast cancer.
– I think it is untenable that we have to wait so long for approval of new treatment, when we have such a diagnosis hanging over us, which threatens our lives. I have seen several sisters who have lost the battle while waiting for new treatment, she says.
Approves “the world’s most expensive medicine”
Three years
Ellen Harris Utne, chair of the board of the Breast Cancer Association, tells Dagbladet that those with metastatic breast cancer are close to her heart.
– It is the most difficult cancer group we have.
She says that those who get metastatic breast cancer are mostly relatively young ladies with young families to take into account. Utne further says that the Breast Cancer Association has been working to try to get an efficiency in the Decision Forum.
– Two years ago, I held an appeal at Eidsvoll place in relation to the evaluation of the Decision Forum before it was enacted. We had meetings in the Storting, but got nowhere.
At the same time, she believes the forum is necessary to “separate the chaff from the wheat”.
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It took three years to get Enhertus’ predecessor, Kadcyla, approved in the decision-making forum, she says.
– I think it is far away in the night that it will take so long. We lost many beautiful ladies while waiting. Enhertu is several times better than Kadcyla, says Utne.
– Are there many who choose treatment outside Norway and pay for it themselves?
– As I see it, there are far too many who do it. Not because they are not going to do it, but I think it is something we must be able to contribute in our rich country.
The chairman of the board says that she is concerned that those who seek treatment abroad do not have a good enough basis on whether the treatment is serious or not.
– Then they get a hope that becomes false. That’s my fear.
Helland emphasizes that she would not risk leaving Norway and her family for a medicine “that would only prolong her life a little”.
– I would travel for a medicine that seems to be able to make me healthy and that has results. I would not consider going to a hospital that is not recognized, says Helland, who adds that she has done careful research in connection with this.
The disease, the hope and the struggle
Said no to Enhertu
– We have a great understanding that this is a difficult situation for patients and their relatives. We all have a desire to introduce new treatment, which is good and safe, quickly. We also think that it is unfortunate that the processes sometimes drag out, says director of Health West, Baard-Christian Schem, to Dagbladet.
On Monday, the Decision Forum said no to introducing treatment with Enhertu.
– The treatment can not be introduced because with available documentation it is not possible to carry out an assessment of relative effect in relation to the current treatment alternatives, and the price is too high, said CEO Inger Cathrine Bryne in Helse vest RHF to Today’s Medicine.
According to subject director Schem, the information basis from the present phase 2 study was too thin, but there will be more data in 2022. Then they will reconsider the case.
– Unacceptable price requirements
Schem explains to Dagbladet that Kadcyla, ie the predecessor to Enhertu, was first discussed three times in the Decision Forum: In October 2014, March 2016 and June 2017.
– The three times it was decided not to introduce it, because the price the company demanded was too high in relation to the documented effect. The prioritization criteria could therefore unfortunately not be met. But the case was considered again at an extraordinary meeting in August 2017, because the company had submitted a new price offer. The new price offer meant that the Decision Forum could then introduce Trastuzumabemtansin (Kadcyla).
The fact that it takes a long time to introduce new methods is not due to “slow case processing” before an approval, says Schem.
– This is because a monopolist sets unacceptable price requirements, which means that the prioritization criteria, which are set by the Storting, cannot be met – and that the monopolist is not willing to reduce the price, says Schem.
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