Oestrogen Cream

Public Archive
1

I am 2 years post diagnosis for a strongly hormone pos ,3 large invasive tumours bc that spread to a very large number of nodes, had mast,chemo,rads and ovaries removed and am now on femara.

Over the last year I have been getting urinary tract infections around twice a month and have major vaginal atrophy, to the point that I no longer wish to have sexual relations with my poor long suffering husband due to the pain and bladder infections.

I have tried almost every lubricant/moisturiser known to man (or woman) but the fact is, they arent going to work when I have zero oestrogen!

My urologist has suggested an oestrogen cream, but of course I immediately heard bells ring, why bother to get all oestrogren out of my body (with the ovary removal and femara) just to introduce it again?

He explained (backed up by studies) that he would only be prescribing a fingertips worth 2 times a week to the outer genitalia as against the internal applicator full once a day, but I am still very concerned on reading these studies that, topical oestrogen applied in this way, is still absorbed systemically into the body, even though it is claimed that it is only half of the usual recommended dose that ends up in the bloodstream. The oestrogen ring is slightly different in that it produces a surge of oestrogen when first inserted then tapers off.

What I would like to ask, is, has anyone with invasive bc and lymph nodes involved used topical oestrogen for years without getting a recurrence of a hormone positive bc?
As it does seem that there isnt any research on the effects on bc returning in the long term with those that use topical ostrogens , and those that do get a recurrence, is it hormone related bc that recurrs?

I do understand that it is a decision between quality of life versus risk, but I do believe that risks should always be well informed ones.

Sorry if I sound condescending, but I’m really only looking for replies from ladies who have a high risk of their bc recurring as I feel that only in that situation, the decision to use topical oestrogens is more relevant.

best wishes to all

2

Wanted to bump this up in case somebody can help. I am oe++ with active cancer and haven’t used any creams, and wouldn’t under any circumstances. I think it is unlikely that any research will cover this subject as I suspect only a few people would take the risk, and it would possibly be unethical to conduct a trial. I am sorry you find yourself in such an awful dilemma. You don’t say what your onc has advised. I hope you get some helpful replies, but I suspect this is a relatively obscure issue for which little evidence is available.

Good luck

finty xx

3

This link discusses a new product trial - maybe you are already aware of it, if not it might be worth a try.

women.timesonline.co.uk/tol/life_and_style/women/relationships/article6829297.ece

finty x

4

Dear Stillstanding

I’ve had invasive BC with large lymph node involvement. One of the main side effects I have is virginal dryness. My surgeon offered me topical oestrogen cream at one of my consultations. However, been 100% ER positive, I declined. Not sure if I was right in doing this but I felt I had to use my own intuition. I use Sylk because it has no parabens (unlike replens) and I’m lucky in that it works for me. Of recent I had to attend the hospital for a smear test because my GP was unable to take a smear due to the pain it was causing. The gynacologist advised me to make sure I continue to use a cream/liquid at all times because she was aware of the dryness. I think it would be worth doing your own research (good article from finty) + it may be worth asking a gynacologist for their opinion. Good luck and don’t give up.

Jeannie

5

Thanks so much for your replies, I really appreciate it.

I kinda knew, in my own mind, that oestrogen is my nemesis, and I shouldnt go within a stones throw of it, but Lordy why is it so hard to live with zero hormones. Dont think others who havent had BC realise, that zero oestrogen is so much worse than a normal menopause, where the body still makes some hormones to cover the essential workings of the body.

I know I can find acceptable solutions for the dryness and atrophy problems, but Ive almost come to the end of options with my urologist regarding the constant urine infections, ‘become a nun’ seems to be the last option! but after all that we’ve all been through, isnt it just far too much to ask,that we also give up sexual relations with our beloved partners? To me, it seems the final indignity heaped upon my femininity and a less than exciting future for my long suffering husband!

thanks again for the replies (and the article finty)

6

Hi Stillstanding,

I don’t know if you’ve seen BCC’s publication ‘Sexuality and Intimacy’ leaflet at all, but if you haven’t I’ve put the link below for you and hope there’s something in there that may help you. The staff on the helpline will be only too happy to talk to you about this as well if you wish. Calls are free, 0808 800 6000.

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/20/

Take care,
Jo, Facilitator

7

Stillstanding I do so feel for you. I am just about to discover the delights of zero oestrogen (start Femara in September), and I totally agree about all the extra burdens that BC brings with it and all the adjustments that have to be made, and as you say not just for us but our partners too.

Regarding the urine infections problem - would pessaries be helpful, or maybe you have already tried them?
finty xx

8

Hi Flinty,

I have tried most things, but not pessaries (apart from treating thrush) are they specifically for Urine infections?

9

I’m afraid I don’t know much about them, was just aware that they can be used for treating fungal infections, so wondered if they were appropriate for preventing infections too. Will have a quick google and see if I can find something (work displacement - trying to avoid large pile of pre-holiday ironing!).

10

stillstanding,
I have secondary bc, and asked my onc about oestrogen cream as I have tried all the usual ones with no success. She does not recommend it because of the theoretical risk but said it is my decision as it is my quality of life that is being affected.
best wishes N

11

I’m having these problems too - my GP prescribed Replens, but it’s not so much the dryness for me but the actual atrophy - I’ve shrunk!! Someone suggested pessaries which co9ntain oestrogen, and I spoke to my breast surgeon about them. His view was it’s a minimal amount which will be absorbed topically, that it’s a quality of life issue, but most interestingly said if it were him he’d take the pessaries and be comfortable with is sex life.

He isn’t an inexperienced surgeon - head of that dept and spends a lot of time with research, and I do have faith in him. My only reservation - and this is me with a negative look on life - is I have a poor prognosis anyway, and wonder if it’s a case of you won’t be around long enuf to ‘suffer’ any mal effctes from extra oestrogen - as I said, me being black!!

12

I have had hormone positive breast cancer 3 times now, first time 25 years ago then I had a recurrence in 2005 and another one last year.

I have been taking Fermara for 12 months now and have the usual side effects. The last time I saw my onc she said she had no problem with me using oestrogen cream as it is only absorbed locally, it has helped.

I am 63 now and feel that life has to be worth living or else whats the point, I’ve done everything I was told over the years and it still came back.

It is a really personal decision I know but WHY would she prescribe it if it was a danger to me after all she is the expert. (I hope)

Take care

Jan

13

Thanks again for the replies,

Janice, I really do appreciate you posting and congratulate you immensley beating this thing 3 times,it must have been so hard for you.

Broomsticklady, I do understand the way you feel, and its perfectly understandable the way you feel, I also felt like that for a long time (and still do on my dark days) but I now realise that if I’m to make any headway emotionally I have to believe that theres a chance and that I just might be one of the fortunate ones,but I do know, that if it did return and I hadnt done everything I possibly could, I would find it impossibly difficult to come to terms with, but thats just me ,and my personality and in no way would suit everyone.

Over the last day or so, Ive been reading more and more about the topical oestrogen issue and it still seems the jury is out, as its very hard to measure in studies the small amounts that are in the bloodstream, and the use of Aromatase inhibitors such as Femara are reaaly still in their infancy, so the problems and side effects they cause have only been addressed in the last few years.

The Urologist also told me that there was a vaccine now available in the US to prevent urine infections, also antibody treatment thats proving very succesful, unfortunately, as in all things medical, it wont reach our shores for a good number of years.

Based on all these studies, and taking into consideration my mindset regarding risk, I have decided not to use the cream or ring and try to battle on whilst waiting for the UK to eventually catch up to the US in its research.

Thanks again for all your replies, best wishes to you all

14

stillstanding - It’s a bit of a long shot but have you tried Evening Primrose Oil? From my research, it doesn’t contain oestrogen but GLA. I have been on Femara since last November. I do get urinary/bladder symptoms every few months but I don’t think it is an infection, because I am able to get rid of it within a day if I drink lots of water and take bicarbonate of soda. I think it is more an irritation started off by something like sharp fruit juice, but I went to the doctor last week to check. I am waiting for the result of the urine sample test but as the symptoms had gone by the next morning when I took it, I don’t expect them to find anything.

I also take Cod Liver Oil. I don’t have too much in the way of dryness. I think maybe the two things combined possibly “oil the wheels”, as it were:-) Worth a try?

Ann x

15

Hi,
I use oestrogen cream and have done for about 18 months, it really does help! I’m not concerned as it is only absorbed locally. Unforunately surgical menopause isn’t easy and my take on it is do what ever to make things a little easier for myself. I’m 6 years on from bc and 5 from oopherectomy. I’m very well. I may well have a recurrance in the future but if I do I won’t blame the oestrogen cream. Hope you get the urine infections sorted out very soon.
Best wishes x

16

I’ve been post menopausal since I finished chemo in 2007. After my oncologist sent me to see a menopause specialist I was prescribed low dose oestrogen pessaries to use twice a week, although after a few months I only needed to use them once; I was also advised to stop and start them which I did. It was great as they kick started my non existent libido again and stopped all the dry itches etc.

Unfortunately after less than a year on them I suffered 2 post menopausal bleeds which I was referred for and the Consultant at that clinic told me to stop using them, that was last summer. I now just use Replens twice a week and also have Sylk. However, my libido has now completely packed in and I don’t think we have had sex since before Christmas. On the last 2 attempts it was too painful so we gave up. I get email updates regularly from a menopause site and the last one said the length of your vaginal canal shrinks when you are post meno. As I’m only 49 it’s quite distressing, especially as I’ve spoken to a Consultant, a Registrar and a GP about it, all of them women,but none of whom took it seriously. The female Consultant I saw for the post meno bleed said to me “what do you expect, you are post menopausal”. Another told me I should try something “a bit visual” meaning porn films, I said “thanks, but I’ll pass on that one”. Not bloody helpful!