Be aware: some recommendations to be included in our final documents #diagnosis
Updated: Apr 4
1.1 Be aware that many of the early red flags to potential cancer diagnosis can often be dismissed due to their similarity or disguise during varying body changes in pregnancy.
For example, breast changes, abdominal discomfort, vaginal bleeds/discharge can on occasion be early signs of Breast, Bowel and Gynaecological cancers.
1.2 Continue breast examination in women during pregnancy
Palpable and painless mass, bloody nipple discharge, skin changes (retraction/redness), abnormalities of nipple and areola can be the earliest presenting symptom of breast cancer. In addition to the breast examination, (for initial evaluation) it’s possible to perform a breast ultrasound and a core needle biopsy. With adequate precautions (appropriate shielding of the abdomen) it’s possible to subject the woman to radiographs (chest x-ray and mammography). Gadolinium-based non-contrast MRI is prescribed only if needed after the first trimester of pregnancy. Instead, CT, PET and bone scan are contraindicated.
1.3 Encourage women to maintain regular body check during pregnancy as well.
Regular body checks for early potential signs of cancer drop away during pregnancy so it should be reminded during appointments to maintain these.
1.4 It’s important to make a holistic cancer assessment including family cancer history.
In case of a family history of breast cancer, it is important to perform a breast ultrasound enabling a faster diagnosis of breast cancer.
1.5 Doctors should clarify and reassure the patient about the treatment possibilities and the safety for both mother and foetus.
1.6 Give enough time and all the consultations they need to let sink in their diagnosis and the complexity of their condition, before taking a decision.
Due to a new limited ability to process information, due to the high level of emotional activation (Zanetti Dällenbach et al., 2006), provide the information gradually respecting the time needed for a necessary adaptation.
1.7 Ensure that the final decision is based on clear, current and accurate information in line with the “Standards for improving quality of maternal and new-born care in health facilities” (Who 2021).
1.8 Adopting a participatory stance may help women restore a sense of control by feeling actively engaged in the healthcare process.
A study from Kozu and colleagues (2020) revealed that women can experience feelings of regret after deciding, because they did not feel engaged in the health care process or because they did not have the time or power to ask health care providers for more adequate information. Therefore, it is important that care providers should have an open attitude towards women to improve the autonomy of the women and to engage them actively in the health care process.
1.9 Use adequate and appropriate language towards the woman, so she can understand the health care provider.
It is important to communicate with the women in an understandable way and to avoid use of jargon. Medical staff often communicate information about diagnosis, treatments, surgery, etc., without verifying the patient’s understanding, sometimes the language employed to communicate is not clear and it’s full of medical terms, so very hard to understand for the patient (Alder & Bitzer,2008.).
1.10 As long as the decision is made, fully informed by the medical team, this decision must ultimately be respected, irrespective of the prognosis or treatment options.
Alder and Bitzer (op. cit) state in their study two types of clinical decisions: evidence-based and preference-sensitive decisions. The first type contains decisions suggested by physicians, based on scientific evidence, while the other type comprise decisions based on one’s values and internal wishes. Shared-decision-making takes account of both categories.
Women have the right to make the informed decision whether they will continue their pregnancy. Such decisions will not be made easily and can be for reasons linked to faith, nationality, culture, previous birth history and indeed a combination of these factors.
No matter what the prognosis or options, it is paramount that patient choice is always respected. Despite the reassurances that can be provided about the safe parameters for giving treatment during pregnancy (2nd trimester to early third) this will not alleviate the fears in every mother and some will not be willing to ‘risk’ having treatment during their pregnancy. If the team around them have adequately informed of the risks involved in not proceeding with treatment, her decision ultimately must be respected.
Some families will rather proceed with a pregnancy, in the full knowledge that forgoing timely treatment may lead to a poorer prognosis, than having treatment whilst pregnant.
Equally there will be some for whom, despite knowing that termination of pregnancy does not have to be considered due to their diagnosis grading or the treatment options that are available, will still not be comfortable with advancing with their pregnancy whilst undergoing treatment and may wish to end the pregnancy early so she can the strongest treatment options possible offered to them.
Whilst we may not personally or as a collective team always agree with the patient’s choice, it is at the end of the day, their choice. We can simply ensure they have informed choice
1.11 In consideration of the rarity of these types of cancer during pregnancy, recognise/promote the right of the woman and duty of the staff to ask for a second opinion, in centres with high expertise in the field of cancer during pregnancy.
We suggest a platform, developed and run by ABCIP (Advisory Board on Cancer, Infertility and Pregnancy) at https://www.ab-cip.org, where physicians from all over the world can request recommendations regarding the medical care of pregnant women diagnosed with cancer or regarding fertility preservation to the national advisory board.
1.12 Make use of The Rare Cancers Network, when possible.
‘La Rete dei Tumori Rari’ is a permanent collaboration between cancer centers throughout Italy, aimed at improving care for patients with rare cancers, through the remote sharing of clinical cases, the assimilation of diagnosis and treatment according to common criteria, the rational access of patients to diagnostic and treatment resources.