The median age for women (n=24) was 36.5 years, 54% were married or in a long-term relationship, 50% unemployed and 46% had completed high school. Seventy five percent of women (18/24) reported using a contraceptive method, of these 18 women half (9/18) were using the copper T380A IUD, other methods included sterilisation and condoms. More than half of the women (62%) at the time of the interview did not plan to have more children. No women at the time of the interview were known to be pregnant.
Five broad themes were identified linked to the contraceptive and fertility counseling pathways during breast cancer treatment and recovery. These included; i) contraceptive use pre diagnosis; ii) contraception and counseling needs during treatment iii) future fertility intentions iv) fertility preservation options and v) optimal time for contraceptive and fertility counseling.
Contraceptive use pre diagnosis
We explored patients contraceptive use pre diagnosis as this might have influenced future contraceptive use especially if women were required to change their current contraceptive method. Prior to their breast cancer diagnosis, some women discussed having received limited information about contraceptive method choices from healthcare providers. A breast cancer patient explained:
Nobody… gave me any advice on contraception they [healthcare providers] just said that you have to take a contraceptive and you have to use that one [3 monthly injectable] [Age range 41- 45, 3 children]
Similarly, another patient recalled limited post-partum contraceptive counseling and method choice which influenced subsequent contraceptive uptake.
When my daughter was born, they [nurses] told me you must go on something before you leave the hospital. So, it wasn’t my choice, it was them who decided for me. … so I went with the injection it was not a good choice, I didn’t know all the pros and cons …I really didn’t want to because I mean why would I want to put something in me that I don’t know what is going inside of me you. [ Age range 30-35, 2 children]
Contraception and counseling during treatment
At diagnosis and during treatment most women reported limited fertility and contraceptive counseling apart from information around changing current hormonal contraception to a non-hormonal method (IUD); the importance of avoiding pregnancy during treatment, and the possible impact of their cancer treatment on future fertility.
Contraception (non-hormonal methods)
Contraceptive counseling tended to focus on ensuring that patients who were using hormonal methods (injectable and subdermal implant) were provided with the copper T380A IUD prior to treatment highlighted in the excerpts below:
I was on the 3 months injection [DMPA] …they stopped that and then I had to change to the loop [IUD]…it prevents the hormones from developing… I can’t use the injection now because of the cancer. [Age range 46-49, 4 children]
The doctor [oncologist] did discuss contraception because when I was having my next visit for Petogen [ DMPA] … I was already diagnosed with breast cancer… the doctor said I must stop it because it’s not good for me… they gave me a pamphlet to read at home, they did tell me everything about the IUD. [Age range 36-40, 2 children]
However, contraceptive counseling and provision at diagnosis and during treatment was not consistent and some women were concerned about the associated risks of an unintended pregnancy. A patient reported receiving limited contraceptive counseling prior to treatment and was concerned about contraceptive safety while undergoing treatment.
No, I didn’t get advice about family planning… I would have liked to know if I need a family planning, is it safe for me? … I didn’t think about the family planning yet. But I’m going to ask if it’s safe for me to use it. [Age range 41-45, 1 child]
Related to possible risk, a woman who desired another child considered her options and was fearful of the teratogenic effects of chemotherapy on a pregnancy.
… Before I got diagnosed, we were going to try again to have another child. … But then the doctor also told me that if I fall pregnant while on treatment, they will stop the treatment and obviously I want to have the baby … if I get pregnant even when I’m on treatment it can be that maybe my child can die inside of me if I didn’t know I was pregnant, that’s why you have to be on the loop [IUD] or a condom … [Age range 36-40, 2 children]
Contraception and counseling: Providers
Whilst providers recognised the importance of contraceptive counseling, they noted that their focus as clinicians was on pregnancy prevention during treatment rather than on providing comprehensive contraceptive and fertility counseling during a patient’s treatment trajectory.
A provider concurred with women’s accounts around inconsistent reproductive health counseling, which sometimes resulted in an unintended pregnancy.
There is a discussion about not falling pregnant with patients, usually, but obviously then things fall through the cracks, … it depends on how it goes on the day, who sees you, whether it’s brought up or not. Sometimes this has consequences – we have had a few cases of patients who fell pregnant in between treatments.
Oncologists main concern was on pregnancy prevention as chemotherapy (especially tamoxifen) was contraindicated in pregnancy. A provider explained that the focus tended to be on preventing a pregnancy during chemotherapy and less on future fertility intentions.
But fertility is not brought into it so much, it is being mentioned that for the period of your chemotherapy, do not fall pregnant. Not taking it any further than fertility... do you want to have more children in the future, do we have facilities to do banking… that’s not part of the discussion.
Future fertility intentions
Women’s future fertility intentions were influenced by numerous factors including their perceived health status, reaching their family size, partner’s desire for more children, suitable time interval before a pregnancy and understandings around the safety of childbearing post cancer treatment.
However, whilst many women did receive information about avoiding pregnancy during treatment and the need to change to a non- hormonal contraceptive method, most women did not receive adequate information on future fertility possibilities nor a suitable time in their treatment trajectory to consider childbearing.
An older married woman reflected on her continued desire to have children and sought medical confirmation as to a suitable time to have another child.
I want to get information [about childbearing] from the doctor again because I want to know now after I’m finished with the chemo and I want to find out if I’m healthy now to have more children? My hopes were always to have another child… Before I found out I had cancer…my husband and I were planning to get pregnant, but I must first hear what the doctor says… (Age range 41-45, 3 children)
Health was an overriding concern and informed decisions about future childbearing.
I am going to have more children …when I see that I am well…. and when I see that my health has completely improved then I will resume with that [having children]. (Age range 25-29, 1 child).
However, many women did not want more children having reached their family size or were faced with the reality of a cancer diagnosis and were unsure of their future wellbeing.
No, I do not want any more children I already have my blessings.” (Age range 36-40, 4 children).
A woman explained that despite wanting another child she and her partner had come to accept that childbearing was not possible due to her breast cancer diagnosis.
When I mentioned it [fertility options] to him [partner]... He was also very shocked and disappointed] … we didn’t get that chance to discuss it because I just got sick and went for tests and then it’s the cancer and … so we didn’t really have that chance to sit and talk with each other about having another baby… I would have loved another one, but unfortunately, I can’t … so for me I’ve got my pigeon pair already, the boy and a girl so for me it’s fine. (Age range 36-40, 2 children).
We explored whether patients had received any information about fertility preservation procedures prior to treatment. Most patients had not received any information about fertility preservation options, and few were familiar with the concept.
Almost all woman had “never heard about fertility preservation”. However, a woman who desired more children explained how she sought information on the internet.
No they did not discuss fertility options I actually googled it… apparently…you can have kids after you had all this radiation and chemo…I actually read up about that [fertility preservation]… and then I thought to myself wasn’t I supposed to do that ? (Age range 36-40, 2 children and would like 2 more children).
Fertility preservation: providers
Providers concurred that fertility preservation options were not discussed and highlighted the difficulties of discussing fertility preservation as it was not easily available in the public sector.
Despite there being limited fertility preservation options, especially for younger women, oncologists suggested the possibility of treatment with the gonadotropin-releasing hormone (GnRH) agonist to reduce the risk of chemotherapy induced premature ovarian insufficiency, but cost was an inhibiting factor.
One of the resources that would help is to have access to ovarian preservation, like your GnRH agonist and then we can give that to younger childbearing women… but there would have to be some sort of subsidy because of the cost.
Optimal time for contraceptive and fertility counseling
Providers explored the optimal time in a patient’s treatment trajectory where contraceptive and fertility counseling should occur, suggesting that sexual and reproductive health (SRH) counseling should be integrated into treatment and care. All providers stressed the importance of a “holistic and multidisciplinary” approach to contraceptive and fertility counseling.
I think contraceptive and fertility counseling needs to be along the continuum of care. I think it’s something that needs to be brought up again and again … and part of a multidisciplinary medical team.
Whilst women did not directly discuss their sexual health needs, some providers noted that contraceptive and fertility counseling needed to include broader SRH discussions including altered body image and impact of treatment on femininity and motherhood.
It’s also very important that a person understands that when you do get breast cancer and you’ve gone through all of this stuff, your role as a woman has changed … your femininity …So there’s the sense of I am still a woman, I can still have children, I haven’t changed. I think that sense of who I am as a woman needs to be very clearly discussed with patients, now that they have gone through this kind of treatment.
A health care provider noted that contraception needs to be part of a broader conversation around sexuality and recognised the difficulties as they were not trained in having conversations about more intimate issues.
It’s not just a conversation about contraception it’s a wider conversation ... it’s sexuality as well…I don’t think you can only just look at contraception. It is the easy, tangible thing, … sexuality is much more complex to deal with… and I don’t think we have trained our health care providers enough in having a sexuality conversation.
A nurse provider who was involved in counseling patients prior to treatment explained that they did not discuss family planning or contraception in depth nor was it included in the information booklet provided to breast cancer patients.
The information booklet that I give women with breast cancer doesn’t include contraception and family planning just sexual dysfunction.