Sample characteristics
The average age of participants was 46 years and 36% (n = 9) had completed treatment in the 6-month period, 72% (n = 18) of respondents had cervical cancer and only 40% (n = 10) of this sample completed chemotherapy, radiotherapy, and brachytherapy or simple or radical surgery. Most of the 80% (n = 20) had early menopause as a result of treatment, seriously affecting their hormonal and reproductive health, particularly in women under the age of 45 (44% - n = 11). All participants indicated active sexual activity, however, only 60% (n = 15) reported having regular sexual intercourse once per week, as shown in Table 2.
Table 2
Patient Characteristics (n = 25)
ID Patient | Age | Status | Type tumor | Treatment | Hysterectomy | Early menopause | Time completion of treatment | Atividade sexual ativa |
| | | | Braquiterapia | Radioterapia | Quimioterapia | Cirurgia | Radical | Simples | | | |
1 | 50 | Single | Cervical | Yes | Yes | Yes | No | | | Yes | 5 anos | Yes |
2 | 50 | Married | Cervical | Yes | Yes | Yes | No | | | Yes | 5 anos | Yes |
3 | 52 | Married | Cervical | Yes | Yes | Yes | No | | | Yes | 5 anos | Yes |
4 | 34 | Married | Ovário | No | No | No | Yes | Yes | | Yes | 6 meses | Yes |
5 | 54 | Married | Endométrio | Yes | Yes | Yes | No | | | No | 3 anos | Yes |
6 | 47 | Married | Cervical | Yes | Yes | Yes | No | | | Yes | 3 anos | Yes |
7 | 25 | Married | Cervical | Yes | Yes | Yes | No | | | Yes | 2 anos | Yes |
8 | 43 | Married | Cervical | Yes | Yes | Yes | No | | | Yes | 2 anos | Yes |
9 | 43 | Married | Cervical | Yes | Yes | Yes | No | | | Yes | 6 meses | Yes |
10 | 42 | Married | Cervical | Yes | Yes | Yes | Yes | | Yes | Yes | 6 meses | Yes |
11 | 40 | Married | Cervical | Yes | Yes | Yes | No | | | Yes | 6 meses | Yes |
12 | 42 | Married | Cervical | Yes | Yes | Yes | No | | | Yes | 6 meses | Yes |
13 | 52 | Married | Cervical | Yes | Yes | Yes | No | | | Yes | 2 anos | Yes |
14 | 62 | Married | Endométrio | Yes | Yes | Yes | No | | | No | 1 ano | Yes |
15 | 51 | Married | Endométrio | Yes | Yes | Yes | Yes | Yes | | No | 4 anos | Yes |
16 | 56 | Married | Endométrio | No | No | No | Yes | Yes | | No | 4 anos | Yes |
17 | 50 | Married | Ovário | No | No | No | Yes | Yes | | Yes | 6 meses | Yes |
18 | 43 | Married | Cervical | Yes | Yes | Yes | Yes | | Yes | Yes | 6 meses | Yes |
19 | 48 | Married | Cervical | Yes | Yes | Yes | Yes | Yes | | Yes | 2 anos | Yes |
20 | 60 | Single | Endométrio | Yes | Yes | Yes | Yes | Yes | | No | 5 anos | Yes |
21 | 40 | Married | Cervical | Yes | Yes | Yes | No | | | Yes | 5 anos | Yes |
22 | 39 | Solteira | Cervical | Yes | Yes | Yes | No | | | Yes | 3 anos | Yes |
23 | 37 | Married | Cervical | Yes | Yes | Yes | No | | | Yes | 2 anos | Yes |
24 | 59 | Married | Cervical | Yes | Yes | Yes | Yes | Yes | | Yes | 6 meses | Yes |
25 | 32 | Married | Cervical | Yes | Yes | Yes | Yes | | Yes | Yes | 6 meses | Yes |
Participants provided detailed accounts of their post-treatment experiences and related events. After analyzing the interviews, three types of categories were derived from the guide of the interview questionnaire: (1) difficulties of the post-treatment survivor, it is the health adversities that are found by the patients, and the means they have been able to face them; [2] health care, that is, the support of medical or multidisciplinary assistance in dealing with adverse symptoms resulting from subsequent treatment; (3) psychosocial aspects, effects on emotional, psychological, social, familial and marriage relationship (Table 3).
Table 3
Categories, sub-categories, and some citations from participants
Main categories | Sub-categories | Citations from participants |
Survivorship difficulties after treatment. | Pain in the body | "After the radiotherapy sessions, I started having bowel problems that I hadn't had before... sometimes I bleed and I'm terrified." (patient 10) 'Articular pain is terrible... I have insomnia and I sleep badly because I cannot relax because the pain in my legs is unbearable." (patient 11) "I feel a lot of pain in the bottom of my body, some days I can't get out of bed." (patient 7) "I had swelling and pain in the abdomen, it got really big... it made it hard even to move." (patient 19) |
Complaints in sexuality | "After the treatment, everything worsened, I began to feel a lot of pain during intercourse, I have vaginal dryness and shortening and no desire to have sex with my husband." (patient 2) "I avoid sleeping with my husband just because I don't have a libido anymore, my libido is completely over." (patient 3) "I had vaginal dryness and stenosis; and did not want to have sexual intercourse... I finally got into a serious conversation with my husband and told him he could find another woman to satisfy him.” (patient 4) |
Demotivated and unhealthy | "I still can't do my daily activities and I feel very tired, which prevents me from doing small housework." (patient 12) 'After treatment, I have moments that fit me in one day and in others, I just want to sleep and not do anything else... I only get up because I have a little kid who's counting on me." (patient 25) |
Healthcare | Multiprofessional medical support | I went to the cancer hospital for my treatment and I also saw a psychologist and Psychiatrist because my anxiety was very high and I also had a compulsion for food... I really had to get medical help". (patient 22) "I got help from the outpatient sexuality clinic because there is a nurse who explains, advises and makes me better... the conversations I have had with this nurse have made me understand that the disease can best be dealt with when we receive assistance." (patient 20) "I used integrative medicine to reduce anxiety... when I'm very anxious, I do a self sabotage like not taking medication properly, I feed myself badly and do not do the physical exercises that are important to me." (patient 17) "I do physiotherapy with exercises for vaginal dilation, because I feel that I am "closed" and the vaginal pain and discomfort are strong." (patient 15) |
Doctor-patient communication | At the cancer hospital, I had all the support I needed, as well the nurses also gave me all the necessary instructions about the symptoms that we could have and how to minimize them." (patient 19) The medical team was very communication and helpful and immediately after the treatment, I had a medical consult that told me what symptoms I might have, including some that might persist for years." (patient 24) "I got the support of the medical team and they also directed me to physiotherapy... But I think a professional is necessary to support couples, that we might share this pain that my husband and I'm going through this because our relationship has been affected in a very negative way." (patient 9) 'I didn't have the communication and support I needed.. for the treatment of the illness I had all the support, but in the psychological and sexual part had a lot of faults... and it directly interferes with my personal life because those are issues that affect my quality of life." (patient 21) |
Psychosocial aspects | Emotional and mental reactions | " I had a post-treatment counselling, but I was so disgusted with the suffering that the disease brought me that I don't want to do any more treatment!" (Patient 24) "After so much suffering I have endured, I have had many psychological scars... you are suffering pain in your body which also affects your soul... I didn't want people to feel sorry for me, but to have access to meaningful counselling to end so much suffering." (patient 4) "I always sought to have a positive thought, I spoke to myself that the disease would not abate me and I would not lose to this disease... from diagnosis to the end of treatment I had this optimistic attitude and it was essential not to lose hope" (Patient 14) "In addition to my health issue, I have a daughter who needs special care and that made me more anxious because I needed to take care of her and myself... Ultimately, I had to seek psychiatric medical assistance to heal my mind." (patient 13) “I believe that family and medical support were essential so that I had no negative thoughts and I always thought that everything would pass and that at the end, everything would be all right... it was the support of the people and of God that made all the difference for me”. (Patient 16) |
Changes in my self-esteem | "I've been really bitter about the problem I have with vaginal stenosis, because it impacts my self-esteem and relationship, and it makes me sad and very afraid to never be the same woman again.” (patient 6) "I had a really big scar and it was embarrassing for me... people in the street still comment, and it makes me even worse." (patient 18) “When I was in treatment and even after it was over, I made a point of always being done and tidy, didn't let me down with the disease... even people near me as family members didn't believe I was sick... in an episode that occurred to me, a friend came to say, I stopped visiting you because I was afraid to see you skinny, bald, ugly... while I was happy, I was also disappointed that people have biases and misconceptions about the disease." (patient 9) |
| Sexuality and conjugal relationship | “My relationship after treatment has changed, and even sexual relations, but since we talked a lot, it was fundamental for us to keep going together... Nowadays, my husband and I are closer and I can have pleasure and libido intercouse.” (patient 2) “The discovery of the disease is a big shock in our lives and it directly affects the conjugal relationship, but as I was married for many years and having a deep love for him and him for me, it was easier to face obstacles and get through all this". (patient 16) "The relationship with my husband has changed a lot, and we don't have an intimate life with each other before, and it negatively affects our relationship... we're a young couple and we can't have children and we can't have intimate contact because of the pain I'm experiencing, it's terrible." (patient 7) "My husband stayed with me throughout the treatment, however, like a couple, we no longer have any intimacy... I don't want anything else, because I'm afraid and I'm in pain, and it ends up pushing us away as husband and wife". (patient 2) |
The list of questions has been reviewed and modified by authors with cancer experience and expertise and the questionnaire was structured as follows: 1) opening questions, 2) transition questions, 3) key or main questions and 4) final question (Table 4) [25]. Once the interviews were completed, the key discussion points were summarized to check for additional items or omissions.
Table 4
| Questions |
Openness | 1. What were your main general difficulties at the end of treatment? |
Transition | 1) 2. What type of medical/multidisciplinary care was received after cancer treatment had ended? |
2) 3. Have you sought medical/multidisciplinary assistance? |
Main | 3) 4. What are your main sexual-related adverse symptoms or complaints as a cancer survivor? |
4) 5. Have any physicians or medical professionals shared information about the adverse symptoms of the disease and treatment? |
5) 6. Do you have mental health problems (depression, anxiety...)? |
7. Did your relationship with your partner change post-treatment? |
8. 8. Have your self-esteem and body image changed as a result of treatment? |
Final | 8) 9. Is there anything you want to add or anything else that's relevant? |
Survivorship Difficulties After Treatment
One of the main themes of this study was the attempt of women to confront difficulties, especially in the field of health after the end of treatment. In fact, they were concerned about several questions and expressed that pain is the most notable complaint, detected mainly in the joints, legs, and arms. In addition, tiredness and fatigue were also very common symptoms that interfered with simple tasks in daily life. Some patients also believe that after radiotherapy sessions, intestinal problems have developed that have impeded its proper functioning; and to minimize this discomfort, many have adopted a healthy diet because it has directly helped the entire intestinal tract and consequently their well-being. Other difficulties encountered, referring to complaints about sexuality, 23 respondents (92%) indicated that they had sequelae from treatment.
Vaginal dryness, lack of libido, and vaginal shortening were the most common complaints and tended to persist for years after completion of treatment. And this discomfort may have been experienced both in women and caused discomfort in their partners due to excessive vaginal dryness and narrowing of the vaginal canal. Thus, as a result of this problem, strong emotional and psychological upheavals have been faced by patients in their romantic relationships, because the severe pain experienced during the sexual act cause a lot of fear, and many of them admitted that they no longer felt the desire and preferred not to have close contact with their companions.
Healthcare
The second category in this study was the care and health care received by the cancer hospital. Obviously, communication with health professionals was a resource highly valued and used by patients; even, in many cases, when they finished treatment, many felt "lost" and professional help was very important because it made it possible to discuss and resolve doubts that tormented them. In addition, 18 women (72%) answered that soon after the end of treatment, they performed physiotherapy sessions because of problems such as vaginal shortening, and with these professionals’ learned exercises that improved complaints and then could be reapplied at home so that the results were more satisfactory. Many patients realized the importance of the health care services received, however, 3 women (12%) indicated that they did not know about the services offered by an outpatient sexuality clinic that aims to provide information about sexuality and guidance on the use of important medications to minimize the adverse effects of sexual health complaints. Finally, when women understood the importance and expressed interest in participating in these outpatient activities, they were more comfortable with the issues and even had the opportunity to participate in support groups where they interacted, made friends, and strengthened their bonds so that, together, they could get through these difficult times more discreetly.
Psychosocial Aspects
The third theme was the psychosocial approach, where women survivors, in addition to all the health issues they face, other challenges arise, such as a negative self-image, deteriorating relationships and intimacy, fear of death, recurrence of illness, and concern for the future of children. Thus, the pleasant intimacy in their married life after cancer was one of the more stressful and experiences painful for the couple, so the demonstration of affection was more and more distant acts. Some participants reported that after treatment therapy sessions there was a marked decline in libido and sexual pleasure, and with that, they lost interest in sexual intercourse and fear of pain during sexual intercourse, further distancing them from their husbands.
Perceptions related to self-image were other reported experiences that caused a lot of discomfort in women, as they had to accept themselves and bring the new identity of their bodies closer together, and many interviewees indicated that they did not find any positive perspectives in this regard. Consequently, through so many unpleasant experiences, psychological aspects have been extremely affected, and complaints like anxiety and depression have been reported frequently in women, and unfortunately, not all of them could get the treatment and psychiatric care required to minimize these symptoms, and this is due to the insufficient number of health professionals working in this specialty in public health hospitals in the country.