Supporting the

Neuroendocrine Cancer Community

Let’s talk about sex…maybe? Let’s talk about you and NC

Living with cancer can pose significant challenges to many aspects of life, including relationships, sex and intimacy. It can cause practical issues and affect your day-to-day life, as well as physical and mental changes. A knock on your confidence, emotions, and changes in your body can all have an impact on your well-being.   

The initial diagnosis of cancer can place an enormous emotional and physical burden on individuals and their partners. The fear of the unknown, the pain, and the changes in one’s body can affect sexual relationships. This is further compounded by the possible side effects of treatments such as chemotherapy, radiation, and surgery. 

 

 It is very normal to experience some of the below symptoms (and others) while living with neuroendocrine cancer and undergoing treatment: 

  • sickness  
  • tiredness or fatigue 
  • low moods – sadness, depression, anxiety, irritability, embarrassment 
  • pain 
  • bowel problems such as diarrhoea 
  • changes in appearance and scarring 
  • changes in your sex hormones 

 Understandably, you may not feel like having sex if you or your partner are experiencing any of these things. It is essential to be patient and understanding with each other during this challenging time. Neuroendocrine cancer treatment can cause significant physical and emotional changes, and it’s important to allow each other the time and space to adjust. 

Each person’s experience with cancer will be different. The key is to maintain open communication, prioritise emotional support, and be willing to adapt and explore new ways to connect and find intimacy. 

 ———————————————- 

One of our patients, John*, was kind enough to sit down for a chat with me and discuss what having neuroendocrine cancer has meant for him as a single man, starting a new relationship.  

For a bit of background, John battled for 4 years of carcinoid syndrome attacks, before getting a diagnosis. He was told it was probably stress diet-related or food allergies. At some points, feeling like he wasn’t getting anywhere to a diagnosis, he stopped looking for an answer and carried on with his life. Only when he started feeling unwell again did he resume his search for a diagnosis and support. John’s neuroendocrine cancer has spread throughout his body and to his bones, which he thinks could have been avoided had he received an earlier diagnosis.   

Clare – Thanks for joining me today, John. Sex and relationships aren’t always the easiest topics to discuss so I appreciate you taking the time to chat.

During a recent natter support group, you asked the question “Can I still have sex?” Now, I wasn’t there for this meeting, but I hear the question was well received. One, because it was an important question and something that many people probably wonder, but are too scared to ask, and two because you are asking that question shows what an open and safe space our natter support groups are intended to be. So, thank you!

So, to start off, can I ask, are you currently in a relationship?

John – Yes, I’ve been in a relationship for 18 months.  

Clare – And having previously been married, did having a diagnosis of neuroendocrine cancer put you off starting a new relationship?  

John – Oh yeah, I was paranoid. Really paranoid. It was really scary telling her. I’ve tried everything I can to just be ‘normal’. I don’t think many people really understand about this condition which makes it difficult to explain.  When people hear that you have cancer they think you can just have chemotherapy and be better. This cancer is different, it’s more a case of receiving treatments but having to learn to live with it.   

Clare – So given your diagnosis, especially your carcinoid syndrome and experiencing attacks and off days, I imagine a new partner would need to be considerate of your situation and appreciate that you will have good days and bad days.

John – Starting a new relationship with somebody who was so caring and supportive, made me realise that my previous relationship hadn’t been a very  positive one. 

Being in a long-term relationship and receiving a diagnosis, my previous partner didn’t believe my life had to change to make allowances for my condition. In my new relationship, my partner will tell me to take some time out, sit down and make me a cup of tea. She’s amazing. She’ll rub my head and it instantly calms me down and makes me feel better. I didn’t expect to meet anyone, but I met her and feel like I’ve landed on my feet.  

Clare – In a recent natter, you asked if you were still able to have sex, and have children, given your condition and treatment options. What made you ask that question? What exactly did you want to know?

John – I take Lanreotide and wasn’t sure if I was able to pursue having children on it, and nobody seemed to know the answer. I spoke with my Professor, and they said it was okay. But it’s a hormone blocker, which makes you wonder if it affects your hormones and if that would impact getting pregnant, especially as we’ve been trying for a while and so far nothing. I have spoken to the GP about freezing my sperm and seeing if that is a viable option. I don’t believe it’s been done before. I haven’t been given an answer as to whether I can or can’t do it yet.  

Clare – You were due to start PRRT. Were you willing to delay your treatment, in order to start a family?

John – Yes. I don’t want the treatment. I’ve held off having it for six months. I was due to have PRRT, but I really wanted another child before starting treatment. You hear some of the side effects from radiotherapy, so I wanted to focus on having a child before in case it made things more difficult after. I’ve never heard of somebody having a child after PRRT, so I wanted to start asking the questions now.

When I do begin the treatment, it will change things because I won’t be able to have that closeness and hug and hold my partner, or my children, for a couple of weeks each month, which will be really hard. I won’t even be able to go on public transport for a couple of weeks. It makes you wonder, if it’s that ‘bad’, is it going to affect your sperm count? I don’t really know. The treatment will take place over 8 months, and we’ve advised we probably shouldn’t try for a baby during that time, although it can be hard to get a straight answer.  

Unfortunately, recent scans show the cancer of my liver is growing and I’ve reached the threshold of being allowed to delay the treatment any longer, so will be starting PRRT soon.  

Clare – Is it difficult to maintain a physical relationship, having neuroendocrine cancer?

John – It’s hard because when these attacks happen (carcinoid syndrome), you don’t feel good or attractive. It’s not exactly sexy when you’re trying to think about sex and your face is drooping and you can’t breathe! You feel so tired, it’s the last thing you want to do. You just want to go to sleep!

I take Octreotide and they can make me feel a little better and give me a bit more energy. I feel like I have to plan when to have date nights and nights together. The first week (after Octreotide) I feel good so then is the time to do it. By the third week, I’m not feeling great, so it won’t be happening.  

Having to schedule sex and time together takes a bit of the romance away but it seems the best way to do it and it ensures we do get that time together. But even when you do schedule a date night, a (carcinoid) attack can still happen and put an end to any plans that night. I have tried Viagra but due to my carcinoid syndrome and other heart problems, I have to be very careful as to what I can take**. Some medications will increase my heart rate and cause serious problems.  

Clare – I understand. Each situation is completely personal. Thank you for sharing.

Going back to where your conversation first began, did you feel a Natter support group was a safe space to talk about sex and relationships?

Oh yes, the Natters are brilliant! I feel like I’ve learned so much from them and I hope I’ve been able to help other people through sharing my experiences.  

Clare – Thank you so much John, it’s been really great speaking with you today.

John – No worries at all. Anything I can do to help other people I’m always happy to do. 

————————————— 

 Navigating a Cancer Diagnosis in a Relationship  

  1. Open Communication: One of the most crucial aspects of navigating a cancer diagnosis in a relationship is open communication. It’s essential to express concerns, fears, and needs openly and honestly with your partner. This includes discussing sexual desires, potential difficulties or limitations, and any changes in desire or performance. 
  2. Emotional Support: Emotional support is vital during this time. Both partners should feel comfortable expressing their feelings, frustrations, and needs.  
  3. Finding Alternatives: It may be necessary to explore different forms of intimacy if sexual intercourse becomes challenging or impossible due to the physical effects of cancer or its treatment. 
  4. Seeking Professional Help: Cancer can be a source of significant stress and anxiety, which may impact the sexual relationship. A trained therapist or counsellor can help couples navigate these challenges and strengthen their emotional bond. 
  5. Explore Sexual Wellness: If you’re experiencing changes in sexual function due to cancer treatments, it’s essential to discuss these concerns with your healthcare team. There may be strategies or treatments available to help manage these issues and maintain sexual wellness. 

In addition to how you feel physically and mentally, it is important to consider the invisible side effects that your medication may have or the implications of having sex while you are undergoing treatment. Some treatments such as radiotherapy, need consideration about protection, especially when considering pregnancy and caring for a baby. 

Whether that be through sexual intercourse, or in other ways in which you find closeness and companionship. There is no such thing as a ‘normal’ sex life, so it is important not to compare yourself to others, and to find happiness in your own situation. 

 Illness changes relationships, but there is support out there to help with this: 

  • Relate – The largest provider of relationship support in England and Wales. Relate helps millions of people every year to strengthen the relationships that mean the most to them 🌐https://www.relate.org.uk/ 
  • Rareminds – Couples Counselling. Living with a rare disease impacts not just the individual, but the partners too and the couple’s relationship as a whole 🌐https://www.rareminds.org/ 

 —————————————————————————–

*The patient’s name was changed for the purpose of the interview 

 ** Only take medication prescribed and approved by your healthcare provider. Each individual will have their own care plan and all medications and treatments must be approved by a medical professional. 

It is essential to discuss any concerns about sexual activity with a healthcare provider who is familiar with the patient’s medical history and treatment plan. They can provide personalized advice and recommendations based on your specific situation. The safety and advisability of engaging in sexual activity while undergoing any sort of treatment will depend on various factors, including the individual’s overall health, the location and stage of the cancer, and any potential side effects or limitations of the treatment.  

Some treatments for neuroendocrine tumours cancers can affect sexual function and well-being, including PRRT, chemotherapy, etc . . .. It is always important to discuss potential consequences, as well as more short-term side effects, with your medical team before starting treatment – so that you can make an informed decision.