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[Tc]

Nas. Could you possibly contact the oncologist secretary and get them to send the letter electronically ?
When i was waiting for oncologist letter to gp I phoned the secretary and found that she was still typing letters from 3 months previous.it seemed to hurry up the process as it was sent very quickly after that by fax or email not sure which.
X

[CLKD]

That was my thought, contact the Secretary and ask for the Consultant to write to your GP.  We have a Member here who has written a book, the Consultant is a candidate for a copy : Me and my Menopausal Vagina : 

Let us know how you get on!  In the mean time, take some pain relief which can ease symptoms.

[Nas]

Hi
Yes I've emailed her secretary and asked if the oncologist could please email my GP with ger thoughts on cream or pessary. It feels as though I have no control over my own body and it's making me so mad! Had she said yes to the cream in her initial letter, I could have obtained the prescription last eeek and might be feeling a bit better by now! 

[Wrensong]

Hi Nas, so sorry to hear you are having problems getting the treatment you need.  GPs are sadly often not up to date on HRT & will err on the side of caution.  My understanding is that women who have had breast cancer, even if invasive, can usually use topical (i.e. vaginal) HRT with the blessing of their breast care team - including surgeon & oncologist.

After the initial few weeks there is virtually nil systemic absorption of the already low dose oestrogen these topical medications contain.  They may be more willing for you to have Estriol cream than Vagifem though, as this is a weaker form of oestrogen, but I believe either is usually considered OK. 

As you were treated so long ago I guess it's possible some of your breast care team will have moved on by now, but someone with access to your history should be able to advise, assuming you are not still having occasional follow-up appointments.   

Some breast care specialists are also willing for their patients to take an informed decision to use systemic HRT for improved quality of life, but this may depend upon the type & stage of your past cancer.

I would chase for written approval from your oncologist as suggested by the other ladies & keep a copy of any letter of authority you get to show any future medics who may question your use.  You may also find it helpful to read what Dr Avrum Bluming has to say in the recently published book Oestrogen Matters (co-authored by Carol Tavris).  He is an American Oncologist who has spent 20 years treating breast cancer patients and is open minded about their later using HRT. 

I do feel for you - it's a difficult & important decision, so I would find out as much as you can so you feel comfortable with whatever treatment you decide to push for.  Good luck with it & I hope you start to feel much better soon.

[CLKD]

Quality of Life.  As well as if the medical profession are so worried why not prescribe, watch and make notes?  It's OK going back in time but we need modern-day information about how exactly HRT may impact on ladies who have had breast treatment. 

[Wrensong]

I agree CLKD - we need more studies.  Women in need of systemic HRT after breast cancer sadly still face a very difficult decision.

[Nas]

Thank you both.
I totally agree with what you say. I have regular mammograms, but no contact with breast nurses or surgeons now. I had no idea that they would have to consult with an oncologist who I haven't seen in years, to obtain a bit of cream. To me, it's my body, my decision, end of. The private lady who I am seeing on the 16th said she prescribes the cream and/or pessary, as the amount of oestrogen absorbed is minimal. You are right Wrensong, we do need more studies, otherwise how are they going to know what the exact risks are? I may get a recurrence without HRT, I may not. Life is a risk? I am currently waiting for the oncologist to email the GP and get an appointment to see her, but it's taking ages. I just don't get what the controversy is because none of them can tell me what my risks are now, therefore I can't even make an informed choice.

[CLKD]

I never had to see my Team after discharge back to the GP  who prescribed VA treatment without hesitation. 

[Wrensong]

Hi again Nas, it sounds as though your GP is being ultra cautious - I think it's entirely possible that another surgery or maybe even a different GP at your current surgery would have prescribed the topical HRT without feeling the need to consult your oncologist, as CLKD tells us was her experience.  It can come down to an individual GP's confidence & their past experience with other patients.  My former GP, a middle aged woman who has now retired, was anti HRT altogether.  She was a lovely person who I got on very well with but we did not see eye to eye on HRT.  I felt it was unfair to push her to prescribe something she felt uncomfortable with so went to 2 private consultants for advice before I eventually began HRT after more than a decade of life-wrecking symptoms (with a family history of breast cancer).  Another medic, a bloke & much more confident, clearly felt I was not enough of a risk taker & was fond of pointing out that every time we get into a car etc we take a risk.  Neither approach was particularly helpful - becoming as informed as I could (& desperation) was what helped me decide what to do.

People have such strong opinions about HRT & sometimes these are unfortunately based on out of date information or worse still, ignorance.  "Do no harm" also resonates louder with some medics than others - though of course denying you the topical HRT you need is a decision that has harmful consequences for you not only physically but in the amount of stress the runaround to get it is causing.  But I imagine your GP would consider the harm at the other end of the scale to that he/she is afraid of.  I think unless it is a female GP who has personally experienced VA it can be impossible to appreciate the misery the condition can cause.  Some tend to think it's just a bit of dryness that can be sorted with a vaginal moisturiser or lube.  But for many of us it is far more than that. 

It can put us in a very difficult position & really ramp up the stress when we know a medic has our best interests at heart & opposes what we feel we need, though we are willing to take a risk for the sake of quality of life.  It can feel as though there is an unfair balance of power & that's hugely frustrating.

There is simply not enough information for women who have had BC to make a thoroughly informed decision about HRT use - it can only be made on the incomplete info that is currently out there.  It sounds as though you accept that & are wiling to take responsibility for the decision, but if it is just topical HRT you need it is generally considered OK after BC treatment has been completed & I think you have just been unlucky in coming up against such a song & dance to get it.

I hope the oncologist approval comes through quickly, but if not, you have the private menopause clinic appt coming up.  Can't help feeling it should not have been necessary for you to go to these lengths or pay for private treatment, but many of us unfortunately have to resort to this where HRT is concerned.  Good luck with it - I hope you find some sympathetic help & can get on with your life with good relief from symptoms.
Wx

[Hurdity]

Hello Nas

 

You've been given a lot of excellent advice already.

To answer your earlier question about who writes the NICE Guidelines - they were drawn up after about 2 years of work by an expert panel - the Menopause Guidelines Development Group - who met regularly to go through all the literautre after first doing a public consultation to decide the scope of the guidelines. These were published in November 2015 as two main documents - the summary guidelinesa nd recommendations for clinicians, and full guidelines which gave detailed analysis of the sceintific papers and evidence used which enabled them to come to their conclusions and on which to base their recommendations.

Obviously the research is out of date as soon as the Guidelines are published as new research is happening all the time - but they are the best we've got. The British Menopause Society and other worldwide menopause societies also regularly publush their own recommendations every few years - on HRT generally and including risks of conditions developing after use and also from using HRT after certain conditions.

Just recently the BMS has prpduced papers on breast cancer and HRT and they have also produced a simplified consensus statement here:

https://thebms.org.uk/publications/consensus-statements/the-diagnosis-of-the-menopause-and-management-of-oestrogen-de%EF%AC%81ciency-symptoms-and-arthralgia-in-women-treated-for-breast-cancer/

The point you will be interested in is:

"Lifestyle measures and non-hormonal interventions should be first-line management for estrogen deficiency symptoms but if these are ineffective systemic hormone replacement therapy or low-dose topical estrogen may be considered but only after taking specialist advice."

There was also a very detailed somewhat technical paper produced in March which I downloaded but can;t find a link to the full paper but I have extracted the relevant part here - apols for formatting as it;s a pdf:

"The British Menopause Society
consensus statement on the
management of estrogen deficiency
symptoms, arthralgia and menopause
diagnosis in women treated for early
breast cancer
Jo Marsden1 , Mike Marsh1 and Anne Rigg2;
on behalf of The British Menopause Society

Vulvo-vaginal atrophy

(i) Commercially available vaginal moisturisers and
vaginal lubricants are recommended as first-line
treatment.38,54 It has been suggested due to the
weak estrogenic activity of parabens, that lubricants
containing these are avoided (e.g. K-Y
jelly, Replens, Astroglide); however, clinical
data to support or refute an adverse effect on
women treated for breast cancer are completely
lacking.55
(ii) If symptoms persist, low-dose vaginal estrogen
can be considered in women who have estrogen
negative tumours or who are taking tamoxifen,
but due to absence of clinical trial evidence confirming
lack of an adverse effect, advice about
prescribing should follow that as for systemic
HRT, above, and should be discussed with the
relevant oncology team.
(iii) Low-dose vaginal estrogens should not be used
in women taking aromatase inhibitors. The oral
SERM, ospemifene, is not recommended for the
treatment of refractory vaginal symptoms as
there is a lack of any evidence about safety in
women with breast cancer, although preclinical
studies suggest a neutral effect on breast
tissue.5,38 Available studies only have shortterm
follow-up using unreliable surrogates for
predicting future risk (i.e. clinical breast examination,
change in mammographic breast density,
breast tenderness).56 The Food and Drug
Administration and Endocrine Society support
this recommendation against its use although
The European Medicines Agency state it may
be used after completion of breast cancer
treatment.48,57,58
All guidelines and consensus statements concur with
the recommendations of the NG23 for use of vaginal
moisturizers and lubricants as initial treatment and
consideration of low-dose topical estrogen if symptoms
are refractory.5,43,48,51,53
Alternative interventions, which may be possible
options for future management of symptoms in
breast cancer patients include vaginal laser treatment
(i.e. the fractional CO2 and erbium lasers) and intravaginal
dehydroepiandrosterone (DHEA) but both
require further evaluation. Preliminary study of both
laser treatments and DHEA for their short-term efficacy
in breast59–62 cancer patients is encouraging. For
laser treatments, evidence of long-term efficacy and
direct head-to-head comparison with topical estrogen
is necessary before informed recommendations can be
made. DHEA has the theoretical advantage of local
delivery of active estrogen and androgen metabolites
via the activity of aromatase in vaginal epithelial
cells, with minimal, probably clinically insignificant
increases in serum estradiol, estriol or free testosterone
and appears efficacious in women treated with tamoxifen
and aromatase inhibitors, the latter suggesting
these may not impair intracellular, vaginal aromatase
action. However, its safety in this group of women
requires confirmation in clinical trials.54

Practice points
(I) If symptoms of vulvo-vaginal atrophy are not
relieved by vaginal moisturizers and lubricants:
a. Topical estrogen should not be used if a
woman is using an aromatase inhibitor due
to concern systemic absorption (albeit very
low) may negate the latter's efficacy.5
b. If a woman is using an aromatase inhibitor,
switching to tamoxifen may ameliorate symptoms.
This beneficial effect can take up to
three months to become evident.
c. If switching to tamoxifen fails to improve
symptoms, additional prescription of lowdose
topical estrogen can be considered.
d. No changes to breast cancer medication
should be initiated in primary care.
Discussion with the breast specialist team is
obligatory, as changes to therapy could
potentially affect disease-free survival, particularly
in higher risk women.
(II) Ospemifene should not be prescribed to women
with a history of breast cancer.
(III) In addition to the management of vulvo-vaginal
atrophy, women with symptoms of sexual dysfunction
may require referral for psycho-sexual
counselling, education about use of vaginal dilators,
pelvic floor relaxation techniques and support
for the management of body image
concerns arising from previous breast surgery,
treatment-induced hair loss or thinning or
other reasons.29
(IV) In a symptomatic woman who has completed
breast cancer therapy and been discharged
from specialist follow-up, health care professionals
in primary care should contact the patient's
breast care nurse for advice as they are best
placed to triage concerns and advise where to
direct the patient."

I haven't had time to read it recently but hope it might be of some interest!

Hope this helps

Hurdity x

PS Hello Wrensong - good to see you on here again -  how are you?!

[Wrensong]

Hi Hurdity, thank you for posting the new BMS guidelines etc.  Para 4, which you have quoted, is especially interesting as it seems to indicate a shift in thinking towards a more open-minded, pragmatic approach towards systemic HRT after BC.  I think the emphasis on advice from breast care specialists on a case by case basis is the important thing to take away - type & stage of disease, subsequent treatment etc will all be relevant. 

I am OK - thank you for asking!

[Wrensong]

I recently came across the following article on an American website called Breast Cancer Choices, containing the headline paragraph:-

"HRT After Breast Cancer - Published Evidence Contradicts Medical Advice
Most health care practitioners remain unaware that most published
medical literature shows breast cancer patients taking HRT actually
experienced equal or better survival than patients not taking hormones.
See studies below from the most prestigious medical journals.
The 26 studies below are listed in no particular order."

http://www.breastcancerchoices.org/hrt.html

I have not reread it before posting here, but from what I remember, some of the studies are short & followed only small numbers of women & some relate to oestrogen-only HRT, but they followed women who took HRT after a breast cancer diagnosis & don't seem to be referring to the statement we sometimes see quoted that women taking HRT at time of diagnosis seem to fare better than those not on HRT.  I would not rely on it as a tool for making a decision about use of HRT after breast cancer - my feeling is that's a personal decision best made after in-depth discussion with the clinicians involved in an individual's treatment.  Nevertheless, it makes for interesting reading.

If you see this Hurdity, I would be interested in your thoughts - I haven't looked at each of the studies quoted in depth so don't know how rigorous or reliable they are.

[Nas]

Hello again and thankyou all (again!) for your excellent advice, thoughts and reading material.

Just to update you. I went to see a private GP with an interest in the menopause and well being yesterday. We spoke for an hour and a half and in that time, she gathered much information.

She was happy to write a 'Dear GP letter re: the vagifem (but the oncologist has now given the green light for this, finally!) Can I just ask what cream is recomended for the outer bits; is it ovestin?

Re: the prescription of any form of HRT. She wants to know from the oncologist, what my risks are of a recurrance, ten years down the line. How is the oncologist going to know that? Will studies have been done? Private GP said she is happy to prescribe either way (once I have these statistics!) but be it on my shoulders.

At one point yesterday, I did wonder if I was doing the right thing in requesting the drug??

She has given me Femarelle.. any experiences of that working?

Nas

[Nas]

p.s is YES VM avaiable on prescription does anyone know? I have to pay for my prescriptions, so it may be cheaper to buy online? 

[Joaniepat]

p.s is YES VM avaiable on prescription does anyone know? I have to pay for my prescriptions, so it may be cheaper to buy online? 

Yes VM is available on prescription. To buy your own from the Yes website, 100 ml tube is £10, 6 x 5 ml applicators £12, 30 x 5ml applicators £40. I don't know which format they would prescribe on the NHS. The cheapest way to use it internally is to buy the 100 ml tube and use it with the syringe-style applicators from Stressnomore.

JP x