The impact of breast cancer on intimacy

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....