Women, sex, and life after cancer 

by Ben Heyworth

Writing in The Guardian (Sun 19^th Feb 2017), writer Marie de Hennezel shares her thoughts on sex, sexuality and aging:

“To me the goal of sensuality is not to preserve the body I had, but rather to maintain my health and desires. Perhaps for the first time, women my age are not afraid to …  reclaim our sexuality. We have desires that won’t go away as we age.”

Her comments on intimacy, eroticism and sensuality are notable for their similarities to the comments of younger women in the same article, which explore how the experience of sex and sexuality can change as women grow older, acknowledging physical and psychological changes. Indeed, rather than giving up on sex altogether, which in our youth-orientated culture could seem to be the want of the ‘older’ generation, for women sex after 50, 60, 70 or older is, according to de Hennezel, ‘a natural gift’, ‘tender and gentle’, and still imbued with ‘immense sexual pleasure’.

Above Marie de Hennezel

“I believe there is no age limit to love, sex and desire, even if we hide it after a certain  age. It is like a secret that we don’t want to reveal, but that plays a key role in the physical and psychological health of older people. We should talk about it more.”

But for many people diagnosed with cancer, talking about sex and sexuality with healthcare professionals, maintaining a ‘normal’ sex life, maintaining intimate relationships and feeling in touch with ones ‘sexual self’ can be very challenging.

Cancer Research UK offer advice and guidance to people affected by cancer and how it might affect feelings around sex and sexuality:

“Not everyone who has cancer will have changes in sexual desire or how they feel about themselves sexually. You may not notice any changes at all. But you may find that the changes cancer causes to your body image affect the way you feel about yourself and having sex. Some people lose interest in sex and feel very tired. But some people say that they want to make love more than usual. If you are in a relationship, a crisis can sometimes bring couples very close together.”

[http://www.cancerresearchuk.org/about-cancer/coping-with-cancer/coping-physically/sex-sexuality-and-cancer/how-cancer-can-affect-your-sexuality-and-sex-life]

It’s important to note that in many instances the type of treatment that is offered can result in both short and long term side effects that might have a negative impact on sex and sexuality. 

Some treatments can have a very direct impact on how you feel about sex and sexuality. For women with breast cancer, if you have had surgery to breast, it may be difficult to adjust to permanent and temporary physical changes to your body, including scarring, swelling, and bruising. You may be worried about the impact this may have on your relationships (or future relationships if you are single) and how you and others my react. You may feel a particularly acute loss if your breasts were an important part of how you respond sexually.

Here on the vMDT project, we are predominately dealing with those long term side effects that have proven to be very problematic for patients. At the moment, we are open to referrals from oncology teams who have been treating cancers found in the pelvis. This will include cancers found in the vagina, cervix, or womb. Treatment options available for these types of cancer (stage 2 and above) would almost certainly include radiotherapy and your oncology team will help you make an informed choice about whether this is suitable for you, and discuss any possible long term side effects that might arise. (NB. Ovarian cancers are usually treated with chemotherapy not radiotherapy)

Many women do encounter problems in the long term that are not immediately apparent immediately after treatment has concluded, and can be quite tricky to resolve. But with increasing numbers of people being treated successfully, the prevention and alleviation of late side effects after treatment have become a priority. We hope the vMDT project can play a significant role here.

There is no reason why your treating team cannot help you overcome any problems around sex and sexuality and please don’t feel that these topics are somehow ‘out of bounds’, a cause for embarrassment or something that don’t apply to women of a certain age.

Please visit www.macmillan.org.uk/vmdt for further information. 

Understanding the long-term consequences of cancer: Patient perspectives

The Macmillan virtual MDT has been developed to help patients experiencing chronic long-term consequences following cancer treatment, the project has several groups which exist to agree and maintain the direction of the project. One of the most important groups is the Macmillan virtual MDT Reference Group for People Affected by Cancer (RGPABC). The role of this group is to provide advice and guidance to the project, and to help support the optimisation of patient experience during a referral to the vMDT.

Each member of the RGPABC has their own experience with cancer, and many have a personal understanding of long-term consequences following treatment for cancer.

Dr Tim Ward is the Chair of the RGPABC and a retired Cancer Research UK Scientist diagnosed with locally advanced prostate cancer in 2011. He underwent radiotherapy in 2012 and as a result, suffered with Pelvic Radiation Disease. Currently, Tim’s professional activity centres on involvement in late effects projects as a patient advocate. Tim says, “I think the vMDT is a brilliant modern system for patients to gain access to many specialists in a single referral. This approach is a new way forward when dealing with the often baffling and complex nature of late effects from cancer treatment. It is in my view a pioneering landmark project.”

After radiotherapy and chemotherapy treatment as a young adult for Hodgkin’s Lymphoma, Katherine Stevenson had no knowledge of potential late effects or consequences of her treatment. "Everyone focuses on the fact you are 'cured'". Over a period of years she was experiencing a variety of medical issues and symptoms. Katherine visited her GP, and after many consultations, tests, and referrals she reached a point where no one knew what to do to help. She says, “I was told I was a rather complex case.”  At 36, remembering a connection between the chest radiation and breast cancer, she asked her GP for a mammogram and they found an early breast cancer. Katherine says, “I never knew there was a specific term for problems that arise after cancer treatment, when I found out they were known as ‘late effects’ and ‘consequences of treatment’ I was able to find more support and information. I think it’s great that the Macmillan virtual MDT exists to help people who feel their problems are too complex or too difficult to treat. It will help both patients and healthcare professionals to understand more about the long-term consequences of treatment for cancer.”

Mike Thorpe is a valued patient advocate for those affected by cancer in the Greater Manchester area and beyond, he says, “My own experiences of the long-term consequences of cancer treatment are limited due to only starting to be clear of hormone therapy since March 2016. I am aware that there is a strong possibility of consequences for bowel, bladder and sexual function because of radiotherapy and hormone therapy treatment. I feel that the vMDT will give patients with complex long-term consequences access to the best methods of managing their conditions from the best experts around the country.”

In 2009, Jenice Collins was diagnosed with leukaemia. After initial chemotherapy treatment, she had a Stem Cell transplant in 2012, “I am very lucky to be in remission and I am forever grateful as the transplant has been lifesaving. I once read an article where a Stem Cell transplant was said to be just as life changing as open heart surgery. At the time, I didn’t understand the comparison but with hindsight I have come to realise what they meant.” Jenice reports that there’s not a part of her body that is unaffected by the transplant, and over the years she has had referrals to most other medical specialties. The issues are sometimes complex, and almost all related to some side effect of the treatment, “Most of the referrals have led to straightforward changes in my life which have no doubt improved its quality.” Jenice believes the development of a vMDT is important because it will “…make sure there is access to specific expertise and a knowledge base that exists across the UK but is not always visible to the patient. We often just accept long-term side effects but there may be very easy solutions to these which can improve our quality of life.”

As we know, there are around 625,000 people in the UK experiencing long-term consequences following treatment for cancer. These late effects can be very diverse and complex because of multi-modality treatment and require expertise outside the conventional follow-up clinic way of working. Dr Gill Levitt is the clinical representative for the RGPABC, and an Honorary Consultant Paediatric Oncologist with years of experience helping people with late effects. Gill’s view is that “This multi-disciplinary platform can provide expert advice without the need for patients to travel to different locations. In addition, it enables healthcare professionals from different specialties to work cohesively towards the goal of improving the outcome for patients.” The way the Macmillan vMDT has been developed will also contribute to dispersing expert knowledge across the UK which is needed to provide first class care for people living with and beyond cancer.

Due to their combined knowledge and experience, the RGPABC have been instrumental in ensuring the patient is at the heart of any referral to the Macmillan vMDT. The group recommended that all patients agree to a referral before it is made by their healthcare professional. They developed a patient information leaflet, explaining how the vMDT works and providing an opportunity for patients to write a personal statement, to be submitted with their referral, about how their complex symptoms are affecting their quality of life.

The aim of the vMDT project is to improve outcomes and quality of life for people experiencing complex long-term consequences, with the help of RGPABC members the future direction of the Macmillan vMDT will continue to be developed, including how patient experience can be captured – and optimised. The RGPABC want anyone experiencing debilitating consequences of treatment to know that they can seek help, they don’t just have to ‘live’ with the problems they are facing.

For further information on Macmillan virtual MDT visit: www.macmillan.org.uk/vmdt