On the dining table is a memory book that Sissel Hoddevik was given by one of her daughter’s friends. In the group photo on the cover, the girls are holding each other in summer dresses and smiling at the photographer. – I haven’t been able to see much in it yet. Sissel says her daughter had always imagined becoming a mother. When Sunniva Eline Hoddevik was diagnosed with ovarian cancer at the age of 24, she decided to retrieve eggs so that she could become a mother sometime in the future. After two operations at St. Olav’s hospital in Trondheim, where a cyst, one ovary and the appendix were removed, she was considered to have finished treatment for the cancer. She was told that chemotherapy was not necessary since the cancer was detected early. – Wasn’t told about risks After several examinations, Sunniva was allowed to start fertility-preserving treatment at the same hospital in May 2021. Hormone treatment causes a number of changes in the body, especially the abdomen. – But we were not told that this could camouflage the development of cancer, says mother Sissel Hoddevik. Mother Sissel Hoddevik thought her daughter was in safe hands at St. Olav’s hospital. Now she regrets not asking more questions. Photo: Remi Sagen / Remi Sagen Bomtur to Trondheim In June 2021, Sunniva finished her studies in Trondheim and moved home to Ålesund to start her first teaching job. She received follow-up from both the Section for gynecological cancer and the Fertility Section at St. Olavs. At the end of August, she was called in for another follow-up at the cancer section. After traveling on an errand from Ålesund, she was told that it was not possible to carry out a complete check-up at the same time as she received fertility treatment. – It is absolutely incredible that two departments in one hospital are unable to talk to each other. In the medical record it was written that the patient was in good shape, that there were no signs of relapse, and that a new check-up should be done within three months. Sissel Hoddevik took notes along the way while Sunniva was being treated. Photo: Remi Sagen / news Changed the diagnosis But Sunniva had a feeling that something was wrong and wanted to know if the other ovary should also be removed after the fertility treatment was over. St. Olav’s hospital then connected Radiumhospitalet, Norway’s leading cancer hospital. Their analysis of Sunniva’s five-month-old samples showed it was much more severe. Sunniva had a rare form of ovarian cancer. In the papers from Radiumhospitalet, it is stated that patients with this type of cancer have a poor prognosis, and that the recommended treatment is to operate on organs the cancer can spread to, and start chemotherapy immediately. Asked herself to be examined Only two weeks after Radiumhospitalet informed St. Olavs about the aggressive type of cancer, Sunniva was called in for an interview. Sissel went with her to Trondheim. – The doctor who was supposed to explain this to us struggled to put his words into words. The way she presented it made us not realize that this could be very serious, says Sissel. According to the mother, no investigations were planned. Since Sunniva had been unwell recently, she herself asked to be examined. In the journal it was written “relapse cannot be ruled out”. Samples were sent in for analysis and they went home. – When St. Olavs received word from Radiumhospitalet about what this was, the alarm bells should have rung at full blast, says Sissel. She wants to tell about what happened to Sunniva so that no one else has to experience the same. Photo: Remi Sagen / news – Hell In the days that followed, Sunniva only got worse and worse. She was so ill that she was unable to attend her grandmother’s funeral. The mother persuaded the hospital in Ålesund to accept Sunniva. After many examinations, they found out that she had an intestinal loop and she had to be operated on. When the doctors opened the abdomen, it was full of cancer. – There was nothing more they could do for her. She went from being healthy to the palliative care unit. Overnight everything was completely turned upside down. After a month in Ålesund hospital, she died, only 25 years old. In the last few weeks, she could neither eat nor drink because the cancer had destroyed her entire digestive system. – She was in great pain, but the doctors were unable to give her good enough pain relief. It can hardly be described, because it was true hell, says Sissel and emphasizes that the staff at the cancer ward did everything they could to help her daughter. The complaint The mother is very critical of the health care Sunniva received at St. Olav’s hospital. – What I react to the most is that they have not managed to assess her tests properly. If she had come to Radiumhospitalet instead of St. Olav’s, she might be sitting here today. It is an infinitely great sadness that I can hardly feel, says Sissel. She has complained about the treatment to the State Administrator in Trøndelag and Norwegian Patient Injury Compensation, and won with both bodies. Sunniva died on November 8, 2021. In order to create some form of justice for her daughter and get clarity on what went wrong, the mother complained about the treatment she received. Photo: Privat Didn’t get proper health care The state administrator is not supposed to assess the patient’s progress in the light of hindsight, and has therefore not used the diagnosis and treatment recommendations from Radiumhospitalet as a basis when assessing the case. Nevertheless, the State Administrator has concluded that Sunniva did not receive proper health care and that St. Olavs has breached the Specialist Health Services Act. The summary states that there has not been good enough interaction between the departments. The doctors are criticized for not being systematic enough when they did the examination and chose treatment for Sunniva. This is part of the criticism from the State Administrator. The State Administrator lacks documentation in the record that the doctors discussed what stage the cancer was at based on samples and other available information. The report states that the medical record does not show that a thorough enough assessment was made for several months after they received the test answers. discussed the treatment alternatives against national guidelines. Thus, the State Administrator believes that the decision that no further treatment was necessary after the operations was taken without sufficient factual basis. assessed the risks associated with the fertility treatment together – Takes the incident very seriously The state administrator also believes that a comprehensive professional assessment of Sunniva’s cancer was not carried out within an acceptable time. – We take the incident very seriously, and relate to the state administrator’s assessment. We have reviewed and changed our routines, with a focus on learning and to prevent similar things from happening again, writes Runa Heimstad, specialist director at St. Olav’s hospital, in an e-mail to news. Specialist director Runa Heimstad responds for St. Olav’s hospital in a general comment: “There are national guidelines for all gynecological cancer treatment, and we focus on following these. Fertility-preserving treatment is basically part of routine follow-up for this type of cancer, but individual, interdisciplinary assessments are made in each case. We understand that those affected seek answers after the incident. The follow-up of a patient is tailored to the individual in each individual case, depending on the issue at hand. To ensure that we provide the most appropriate and best treatment, we have several common meeting points where the treatment of all patients with gynecological cancer is discussed. We have X-ray demonstrations where new and previously referred patients are discussed, and we have pathology meetings where we discuss further treatment of patients with surgery with a pathologist and specialists in gynecological cancer. We also have multidisciplinary teams that are put together differently based on the nature of the disease, and these further assess therapy and treatment from an interdisciplinary point of view. This also applies to cancer and possible fertility treatment”. As part of the follow-up, the management at St. Olav’s hospital, the clinic management and the State Administrator in Trøndelag have held a meeting where they have reviewed and discussed the offence, measures and follow-up. Photo: Grete Thobroe / news Following the inspection case, the State Administrator has repeatedly asked St. Olav’s Hospital to explain how the routines should be changed so that this does not happen again. – Shortened lifespan Sunniva’s cancer course was unusual. In his final comments, the State Administrator writes that the patient had a rare and very aggressive cancer and that in such cases it is not always possible to make a reliable diagnosis and provide treatment in time. The decision of the State Administrator does not consider whether the offense led to the patient’s death. The state administrator emphasizes that it is uncertain whether the outcome for the patient could have been different. At the same time, Norwegian Patient Injury Compensation (NPE) writes in its decision that the failure in treatment has led to a shortened lifespan. NPE believes Sunniva was not informed about the risk of recurrence by keeping one of the ovaries and the uterus. – May have delayed the investigation In the statement from St. Olav’s hospital to the State Administrator, the hospital admits that the fertility treatment may have had an impact on the outcome: “During the treatment, she had signs of disease development (enlarged remaining ovary, signs of infection) which were thought to be due to hormone stimulation and egg retrieval. This may have led to a delayed investigation and the patient not having the opportunity to receive treatment that slows down the disease.” – How would things have gone if Sunniva had not taken the fertility treatment, do you think? – You cannot know that. St. Olavs still hadn’t seen what type of cancer it was, but it might have been detected earlier. Then she could have received treatment and suffered less, and her life would not have ended in such a bad way. Perhaps she could also have recovered, says mother Sissel. Sunniva was an active young woman. She wanted to become a teacher, like her mother, and was doing her master’s studies when she fell ill. – She had many friends, and was good at getting her friends together, says the mother. Photo: Remi Sagen / Remi Sagen Warns against blindly trusting the system Sunniva was Sissel’s only biological child. Now she only has the memories left. The mother wants to tell her daughter’s story so that others will not blindly trust that the system works. – I have thought in retrospect that I should have been more critical. We could ask for another assessment. Instead of being happy that she avoided chemotherapy after the operations, perhaps we should have followed suit. We chose to trust the doctors. It is important to be told that you must also take care of yourself. Such mistakes have fatal consequences. Sissel’s strategy for managing to live on is to get involved at work, in activities and to be with those who are close to her. – Keeping myself busy is my way of suppressing this. If I had been thinking about this all the time, I don’t know if I would have survived. Photo: Remi Sagen / Remi Sagen
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St. Olav’s did not discover a serious cancer diagnosis – Sunniva Eline Hoddevik died – news Møre og Romsdal – Local news, TV and radio
