The impact of breast cancer on intimacy

Note from BCNA: The following is a guest post in a series we're bringing you this year.

Jane Fletcher is a health psychologist with over 15 years’ experience working with individuals with breast cancer. She runs a specialist psycho-oncology private practice at Cabrini Health and Epworth Freemasons. Jane holds adjunct appointments with the Szalmuk Family Psycho-oncology Research Unit based at Cabrini Health and with Monash University. Jane continues to offer evidence based intervention to individuals, couples and families at all stages of the cancer experience.. She has extensive experience using cognitive-behavioural therapy, acceptance and commitment therapy, a range of existential approaches and mindfulness based interventions. She is qualified in medical hypnosis and uses this for the treatment of cancer related sleep disorder, phobic and conditioned responses. She has a special interest in sexuality and is experienced in a range of specific interventions for the psycho-sexual issues associated with a cancer diagnosis. Special interests include breast, gynaecological, prostate, bowel, lung and haematological cancers. She also works with those who have tested gene positive for cancer who may require prophylactic surgical intervention. Jane speaks widely, both locally and internationally, to peers and those living with a cancer diagnosis and hold adjunct appointments with Monash University and the Szalmuk Family Psycho-oncology Unit.

Some of you may know Jane from BCNA's information forums.



The Impact of breast cancer on intimacy

A diagnosis of breast cancer affects all member of the family unit and can have a huge impact an individuals intimate relationship.  

So what is intimacy?
We use the word intimacy often without defining exactly what we are talking about. Intimacy is not just sexual intercourse, it includes emotional and/or physical closeness.

So why can intimacy be an issue post breast cancer?
A diagnosis of breast cancer is a traumatic event and this trauma can impact on an individuals desire for intimacy. Surgery can have a significant effect on the way an individual feels about themselves. Scaring and changes in the way the body looks impact self-esteem. Body image can also be affected by the many side effects of treatment including weight gain and hair loss. These can impact on how attractive you feel and often result in a reduced desire for intimacy.

In addition, the treatments used in breast cancer can effect the sex hormones produced and this may have an impact on a range of aspects of the sexual experience. Libido, or the desire for a sexual experience, may be affected and the reduction in desire for sex may cause tension and confusion in the relationship, especially if the other partner’s desire for sex is higher. This ‘libido mismatch may already exist in some relationships and this situation can often be worsened by the treatments for breast cancer.

The reduction in desire for sex can also be confusing for the other person in the relationship. People often feel rejected and blame themselves, thinking that they are no longer attractive or loved.

Just thinking for a moment about your own experience, how often have you either raised issues related to intimacy with your health professionals or been asked if there are any issues?  Many people report not raising issues as they were not asked if there was an issue. This ‘cone of silence’ just increases the poor communication that exists in this area. 

So what can you do to help the situation?
The most effective intervention for any issues related to intimacy involves open and honest communication. The avoidance of assumptions and the willingness to do things differently will help build closeness and further deepen a relationship. Emotional intimacy involves the expression of emotion in a way that lets the other person know how you are feeling. It does not mean being able to know what the person is thinking or feeling but being able to ask questions and listen in a non-judgmental way. A relationship that is based on good communication will have a level of emotional intimacy that will assist in managing the impact of breast and its treatments on physical intimacy.  

Physical intimacy is more than sexual intercourse or sexual behaviour. It involves touch and that is essential in the release of one of our pleasure hormones, oxytocin. Touch can be a hug between friends or it can have a more sensual aspect. Touch is an important part our sexual/sensual toolkit. By talking to your partner you are able to expand the sexual/sensual toolkit and discover new things that other person may like and this may be additive to a relationship. 

Touch is also an important part of sexual excitement or arousal. Sexual arousal is still possible even if your desire for physical intimacy is low. The arousal response may just take more time. When a woman becomes aroused or turned on, there is an increased blood flow to the walls of the vagina, which caused fluid to pass through the walls and is the main source of lubrication. This lubrication is what makes the vagina wet. The production of lubrication can be reduced by the treatments for breast cancer. Vaginal dryness is a significant issue for many women post breast cancer. If the vagina is dry and we try to have sex, it is going to be painful and pain on sexual intercourse may cause an avoidance response. The use of a good quality lubricant is essential.  BCNA’s booklet Breast cancer and sexual wellbeing has a section comparing some of the lubricants available. Your breast care nurse will also be able to assist and will be able to advise where you can buy lubricants locally and you can always shop online. If you find that lubrication does not help then please talk to a member of your health care team.

What to do if you need help?
Sometimes we need guidance to be able to discuss these issues. There are great resources available and a good starting point is BCNA’s booklet Breast cancer and sexual wellbeing. Your breast care nurse is a fantastic resource and if they cannot help they will be able to refer you to a suitably trained health professional. BCNA also have a telephone counseling service available for individuals with metastatic disease and the health professionals involved are skilled in discussing issues relating to intimacy. It can be embarrassing raising issues relating to sexual intimacy but if you raise an issue with a member of your health care team then you are closer to finding some strategies to improve the situation.
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Comments

  • suzieqsuzieq Member Posts: 320
    edited February 14
    Thank you Jane.  I found when going through breast cancer treatment I couldn't have done it without my breast cancer psychologist.   BCNA's Breast cancer and sexual wellbeing booklet contains great information.  I suffered terribly from Vaginal Atrophy so I thought this a good time to share my sexual well-being journey

    Please know I am not giving advice.  Only your doctor can do that. Anything I say here you need to check with your own medical team.

    From what I know up to 70% of women diagnosed with breast cancer have estrogen receptor positive pathology.  Standard adjunct therapies include either Tamoxifen or Aromatase Inhibitors or combination of both for 5-10 years.   The latter can create havoc on our sexual wellbeing.

    However, before I get into my journey, for those of us with double positive breast cancer (estrogen/progesterone receptors) I would like to take the opportunity of sharing some good news from Cancer Research UK in 2015 (which I somehow missed) and which also involves work by the University of Adelaide.  Make sure when you read the article you read the note at the bottom which explains about natural progesterone as opposed to progesterone derivatives found in the Pill and HRT:

    http://scienceblog.cancerresearchuk.org/2015/07/08/solving-a-breast-cancer-mystery-why-do-double-positive-women-do-better/

    My journey – Sexual wellbeing after Breast Cancer. Again, I am not giving advice or advocating any treatments.  Your medical team is the only place you look to for advice

    My Diagnosis: July 2012:  58 years of age. 30mm Stage II, grade II infiltrating duct carcinoma clear margins, no lymph involvement, vein involvement, estrogen receptor positive 90-100%;  progesterone receptor positive 70-80% (according to above article progesterone receptive positive now indicating perhaps a better prognosis)

    Treatment: Breast conserving surgery, 4 rounds of chemo, 6 weeks daily radiation then a pill a day for 5 years.  Too easy!  Well, no!

    Aramotase Inhibitors and Tamoxifen:I am envious of any woman lucky enough to be able to tolerate the drugs.  I tried them all but unfortunately had serious reactions and side effects.  Too serious to consider remaining on them.  I tried, I really tried.  I am left with the knowledge now that I have a greater chance of secondary breast cancer – something I have have to live with for past 3 plus years.

    My Life after Aromatase Inhibitors I was left with vaginal atrophy.  (Tamoxifen generally does not give you vaginal atrophy so if on Tamoxifen you probably won’t suffer from this issue).  Symptoms include seriously painful sex, constant urinary tract infections (UTIs), incontinence just to name a few - I had them all. I spent a year on antibiotics for constant and debilitating UTIs. (Apparently what happens to your vagina happens to your urethra as well)  I felt sick and awful all the time.

    Vaginal atrophy can be reversed by estrogen delivered vaginally.  However, with Estrogen positive cancer not recommended.  Instead we are advised to use vaginal moisturizes and lubricants readily available on chemist shelves.  Two well-known moisturizes Replens and Vagisil contain parabens and neither helped me.  In fact my urinary tract infections worse on Replens.   

    Journey to find answers. When bringing this matter to the attention of medical professionals as “quality of life” issue there are two schools of thought to treating vagainal atrophy with estrogen.  Firstly, if you are looking for a yes or no answer you won’t find it here.  You will not get agreement or consensus on this issue from the medical profession.  The specialists and medicos’ I spoke to have a foot in either camp.  

    One school of thought is, if this is making you miserable and affecting your quality of life then estrogen delivered vaginally is not out of the question as the amount required is miniscule.  Many women cease Aromatase Inhibitors due to this problem so medicos feel if it keeps women on them longer it may be worth it.  The other school of thought is "No No No – all estrogen bad for women with breast cancer –nothing you can do about it. Learn to live your life differently now."   I can understand both camps but that didn’t help me with my decision.

    More research: I spoke with three very experienced Compounding Chemists, my (new) Gyno, my GP.  They all helped by continually answering my questions and either confirming or denying my research. But not quite telling me what to do.  Again, please do not act on anything I say here. Only ever talk to your own specialist team.

    Women have 3 circulating estrogens in their body.  Two good, one bad.  I am told the bad estrogen is Oestradiol (E2).  Aromatase inhibitors can’t separate the good from the bad which is probably why we suffer so many terrible side effects.  

    Compounding Chemists told me if considering treating vaginal atrophy with estrogen avoid Oestradiol (bad one).  In Australia vaginal atrophy is generally treated with low dose Vagifem (brand name) which is Oestradiol (E) considered safe for women not at risk.  Medical papers I have read regarding it indicates circulating oestradiol in the blood is only raised during the first six weeks.  When tissues become healthy estrogen drops back to previous levels.

    The other estrogen treatment for vaginal atrophy is brand name (Ovestin Cream).  It contains Oestriol (considered the good estrogen.   So, if I were to treat vaginal atrophy with estrogen it would be Ovestin Cream available on script.  I would add the protection of compounded natural progesterone cream. 

    After all this research I decided to err on the side of caution because medical establishment just can’t agree on anything and more trials need to be done.

    So More research needed:

    Researched Mona Lisa Touch. Feel free to Google yourself.  I won’t go into detail about the science behind this procedure. It is carried out by a trained gynecologist, painless 5 minute procedure 3 treatments 4-6 weeks apart. Success or otherwise depends on experience of Gyno carrying out procedure.  It is expensive but I was desperate to get my life back.  My Gyno at the time, who is female (same one who told me there was nothing she could do and that I should get used to it) told me “I would be wasting my money - it didn’t work”.  I spoke to my GP who did her own research and understood the science behind it and thought it would work.  She found a Gynecologist experienced in performing the procedure.  It worked for me.  I had my first of 3 treatments in Jan 2016 and I have never had a UTI since.  I am very, very, happy I had this done.  My sexual well-being is restored.

    Certified Oganic Vaginal water based Moisturisers and oil based Lubricants.

    To keep things soft and supple I still moisturize from time to time and use lubricants if needed.  I and a few other ladies from another group found great products overseas.   What we found were 100% certified organic products from the UK – so no parabens or other nasties.  These products are the first certified organic products to be listed on England’s NHS available on script over there.  We order direct from the UK site– takes between 2-3 weeks to arrive at your home.  If interested have a good browse around their site.  It has a plethora of information and lists all ingredients in their products.  I printed list of ingredients and got clearance from my doctor before ordering.  She is so impressed she is ordering some for her Pharmacy.  Below is link to their site:

    https://www.yesyesyes.org/

    Final Words: 

    In August I will have reached the 5 year mark.  I am feeling fit and fabulous.  If atrophy returns in the future I may rethink the use of Ovestin Cream (safe estrogen) together with the added protection of compounded progesterone cream.  

    While the Mona Lisa Touch worked for me and I am so happy I had it, it is expensive and I can’t see the Govt subsidizing the procedure.  Some in the medical profession do not see vaginal atrophy as an important issue but I find if a doctor hasn't answers they don’t want to talk about it.

    Good luck ladies.... 

  • AfraserAfraser MelbourneMember Posts: 923
    Many thanks suzieq on a hugely informative post. Vaginal atrophy is a big issue for many women (imagine if male cancer patients found their sexual life effectively stopped!).
    I have tried and been less than excited by (no pun intended) a range of lubricants but being older (not an issue in itself) with an older spouse, some consideration has to be given to my dear love's staying power during what may be a protracted effort! I have heard good things about the Mona Lisa Touch and will investigate further, but the atrophy experience has been valuable nevertheless in understanding the importance of touch, language and laughter! 
  • rowdyrowdy Member Posts: 1,160
    Well said suzie after finishing active treatment having a low labido and painful dry sex when discussed it is ignored. Some doctors think that I should just be grateful that I'm cancer free. I was diagnosied in 2014 and I would say things in this area are not great, actually  awfull. My oncologist gave me a script for cream but not wanting to use. I'm on Arimidex and things are not looking good in that department and I'm only 55.
    Thank you for your posts I have followed your story and happy things are good for you
  • mum2jjmum2jj Member Posts: 2,970
    Firstly thanks to BCNA for arranging a guest post like this.. Thanks to Jane for writing about an area that does often fall into the cone of silence. SuzieQ thanks for all the legwork you do in this area as well. The BCNA sexual well being info booklet is great. I found however that Sylk is no longer available in Australia. Also the link to buy yes does not work. Having said that, thanks to DaisyMarigold and SuzieQ I have been put onto Yes and they have amazing products. I too found replens was giving me continuous UTI's. My cancer was triple negative and after many, many, many UTI's I finally and reluctantly agreed to use a vaginal oestrogen cream. Both my surgeon and oncologist have agreed it is fine for me due to being triple neg. having said that I was a reluctant user, but I could not go on with the amount of UTI's I was having. This and YES have been great for me. I like Suzie buy direct from the UK in bulk. 
    Hope this helps. 
    Paula X 
  • suzieqsuzieq Member Posts: 320
    I have been re-reading through my previous posts and come across an article I posted about written by Susi Lennox, co-founder of Yes which was published in a Newsletter for the charity, Cancer Options UK  Name of article Sexual Survivorship and Yes for Cancer Options

    It is a good read and I have attached. 
  • suzieqsuzieq Member Posts: 320
    Hi Paula, triple negative breast cancer risk of using vaginal estrogen would be the same as anyone else in the community who has never had breast cancer.  This was agreed consensus with all medicos I spoke to including Oncologist so you should not have any concerns.  

    Any reference to Sylk in BCNA publications should be removed as it is no longer available in Australia.  It was ordered from our shelves when it made claims it was Organic.  It certainly is not.

    Anyone in Policy reading these posts should check the link to Yes products in their publications as according to Paul it appears not to work.  This is the link: https://www.yesyesyes.org/

  • suzieqsuzieq Member Posts: 320
    edited February 14
    For anyone interested here is a comparison of vaginal moisturisers:
  • Di_BCNADi_BCNA I work at the BCNA office in CamberwellStaff Posts: 976
    Thanks @suzieq -- we're updating the booklet at this moment, so I'll check and update the links. :smile:
  • traveltexttraveltext Member Posts: 38
    edited February 15
    Afraser said:
    " (imagine if male cancer patients found their sexual life effectively stopped!)."

    As a male breast cancer patient my sexual life was affected during and after treatment. Certainly it stopped during treatment. Now as a prostate cancer patient post prostatectomy, my sex life has stopped altogether. 

    Both th men and women's sex lives are affected by many cancers. 

  • AfraserAfraser MelbourneMember Posts: 923
    Dear traveltext

    My abject apologies for an uninformed and thoughtless comment. My husband and a couple of friends have had cancer treatment and did not have that problem, but I was utterly wrong to generalise. Please forgive. 
  • primekprimek Broken HillMember Posts: 3,199
    I also wanted to discuss the impact on our spouses. I know that our intimacy declined rapidly during chemo as it simply wasn't  possible. I personally felt very unattractive with a 20 kg weight gain, being bald and both breasts removed. My husband cuddled and we occasionally had sex but it was often thwarted with performance issues not present prior. (His need to start on antidepressants didn't help) So it still seems to exist between us now. I personally feel better about myself but I think the whole breast cancer experience and real fear of causing me pain or him making unwanted advances left us feeling too scared to try and fail. It is the last part of my life to recover. I am hoping our upcoming holiday without the pressures of surgery, appointments and treatment will heal us and intimacy will return. It may well at least give us time to discuss it in a less pressured environment. Our life certainly has changed with treatment in ways we never thought it would. Thanks for the article and opportunity to raise this issue.
  • LITHGOW1950LITHGOW1950 Member Posts: 256
    Thank you Suzie for such an informative post. You are amazing and have done so much research.  I have just ordered the YES products thru green organic or is it organic green.  I noticed some  ladies order from UK. I'm not great on ordering things via websites so hope I've done the right thing. I'll soon find if I have ordered it correctly. 
    Anne-Marie
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,085
    edited February 17
    Firstly to BCNA for having a guest writer discuss an issue which impacts us all male and female while dreaded Cancer invades our bodies a huge Thank you... 
    I am wondering does Jane come and speak about this issue as we are often looking for this in support groups for BC ? 

    Suzie I appreciate the effort you have gone to find help and then pass that information onto others. I acknowledge that you are speaking from a personal point of view when you relate how you have gone about restoring your sexual wellbeing. 
    It is a very hard subject for people to discuss and it is only by us asking and speaking out about these issues do we raise awareness and then get the support and help we need to return of a more intimate relationship with those we love. 
    So thank you . 
    Alice 
  • CosetteCosette Member Posts: 655
    I am wondering does Jane come and speak about this issue as we are often looking for this in support groups for BC ? 
    Jane is very busy and we appreciate her stopping by and writing this wonderful post for us. You can catch Jane at BCNA events such as forums and Summit. I will let her know that she's welcome to get in touch with support groups as well.
  • GlemmisGlemmis Member Posts: 204
    I noticed Jane is qualified to practice hypnosis for sleep disorders. I wish she was based in Sydney!
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