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[cazjen44]

Hi, I am now 7 weeks post lumpectomy surgery.  Review appt with breast surgeon and Oncotype DX test 2 weeks after surgery, confirmed all the cancer was removed and lymph nodes clear and the test result from America was good, the score was 1, the lowest they've ever had.  This means very small chance of it coming back and I don't need chemo.   I do, however, need 3 x weeks of radiotherapy which starts on 2nd July.

I have been prescribed Letrozole to take for 5 years because apparently we store oestrogen in our fat stores and this needs to be blocked.  It doesn't block the oestrogen from HRT though..bizarre.  I've haven't produced natural oestrogen since 2001.

Whilst all the above is good news, I am now completely off my HRT, having weaned off gradually but am now 2 weeks without using any HRT and feel AWFUL!!!

Symptoms I am struggling with the most:-

1.  Constant feeling of light headedness which is really getting me down.
2.  Night sweats - in the last week GP has prescribed clonidine 2 tablets twice daily - to try and dry up sweats.
3.  Fatigue.
4.  I do feel as though my blood pressure is up, I can feel it pounding in my chest.  But of course no hormones and anxiety and this bloody light headedness is going to cause heart rate to go up and down.
5.  The low mood has kicked in over the weekend.  Lots of tears and curling up in a ball and sobbing.

When I saw the GP last Monday (yet another locum), he visibly recoiled when I mentioned HRT and breast cancer and menopause symptoms and literally couldn't wait to get me out of the room, after throwing a prescription at me for clonidine.  I asked him about anti depressants and I quote "you are smiling too much for anti depressants".  I was putting on a brave face.  He even wanted written confirmation from the breast surgeon re prescribing Vagifem which I am waiting a prescription for.  Talk about twitchy!  I am allowed Vagifem and hopefully script ready tomorrow.

I have spoken to my breast nurse on Friday and she was understanding about my menopause symptoms, and has said I have to ring her on a weekly basis with an update on how I am feeling, and if necessary she will bring me back in for a further discussion with the breast surgeon.

I'd like to know if anyone else out there is on letrozole and what anti depressants can be taken with letrozole.  Will anti depressants help with light headedness.  I know this is caused by complete lack of oestrogen as I suffered last year with it. 

Is Vagifem good stuff?  I have read it is but would like to hear more reviews.

I am willing to try and stay off HRT but it isn't going well so far.  I'm already doing research to travel and see a top specialist in London.

No ovaries sucks big time.  Breast cancer one scare and the medics have hit the panic button.

I am properly fed up and turned 49 last week.  I want my life back.  Today I stayed in bed till 1pm as light headedness so bad.  I just laid in there crying into my pillow this morning. I am up and dressed and off to pick my daughter up from college... She is the only thing that brings me happiness.

I need a big hug and someone to help me.  I can't live the next 20-30 years like this 

[Joaniepat]

Cazjen44, there is a newly released YouTube video with Diane Danzebrink speaking to Nick Panay about HRT after breast cancer. It is excellent. Perhaps it is Mr Panay's clinic you are thinking of going to?

If you have symptoms of VA and they are willing to give you Vagifem (which they certainty ought to) then try it and see how you get on. If it doesn't help there are other options.

Wishing you all the very best with your treatment and recovery, and sending big hugs,

JP x

[CLKD]

Well done on getting this far!  T here is a Surgeon who prescribes his wife and daughter HRT I think MaryJane put something on here  if I remember I'll have a
look-C ;-)

HRT for vaginal atrophy is TOTALLY different to over-all HRT.  There should be no contra-indication and after all, quality of Life is important.  It really annoys me that if Consultants are going to refuse women HRT due to breast disease, then double mastectomy should be the option of choice, surely   

One can't feel high blood pressure but you may have anxiety related feelings which will cause thumping heart. 

You can have a  and I suggest that you ring your local Pharmacist or drop by, take the medication with you and ask the questions.  If necessary he/she can contact various manufacturers to see what works with which  . 

Light headedness can be caused by not eating properly or being dehydrated: or a nerve in the back of the neck which causes dizzy-type symptoms when the head is moved.  Or a side-effect of medication!

[CLKD]

From MaryJane recently:

Read oestrogen Matters book by Avrum Blumin his own wife & daughter have had breast cancer and BOTH are on HRT.

There is an awful lot of media propaganda, & medical evidence that proves that we have been lead down the wrong path.

He is a top US breast oncologist.

[racjen]

I'm so glad you've got through the surgery and don't have to go through chemotherapy - that really is the worst part of the whole thing, 3 weeks of radiotherapy is a walk in the park by comparison - you'll probably find it quite tiring (but that's partly because you have to go to the bloody hospital every day!) and I did get a fair amount of soreness like bad sunburn, but it didn't last long.

If your chances of a recurrence are so slim I'm surprised they're so adamant about HRT, it really should be your choice based on your quality of life. I found one of the problems was that, because my menopause was brought about very suddenly by chemotherapy, it was hard to get doctors and counsellors not to keep fobbing me off with 'well you're bound to be depressed, you've just been through breast cancer'. I've had to really battle to get them to take the menopausal symptoms themselves seriously; I ended up changing GP to find someone who was really willing to listen and she's now my main support - hospital staff have been pretty clueless. As you say, you can't be expected to live like this for years - you need to find an ally who'll work with you to find a solution. Can you afford to go private?

[Hurdity]

Hi Cazjen

First of all have a  and one from us all: 

As far as HRT is concerned - you will have to consult a specialist - there are iters I am sure who mught have taken HRT after breast cancer on here although no-one comes to mind. There was a paper about it recently i think.

Re Vagifem - this will also need to be discussed with specialist as it might be contra-indicated if you are taking an aromatase inhibitor (like Letrozole) - it doesn't block oestrogen as such but prevents the enzyme (aromatase) from working which converts steroid precursors to oestrogen in the body.

In terms of anti-depressants - there was a paer produced a couple of eyars ago which went through what the best alternative treatements to HRT were for women who had had breast cacner. I don't think it's free any more - the paper - but I downloaded it when it was open access so will extract some of it for you.

Sorry it is formatted weirdly as it is a pdf:

"Clonidine:alpha adrenergic receptor
agonist/licence class anti-hypertensive
and menopause symptom control
Clonidine is the only non-hormonal drug with a
licenced indication for control of hot flushes in the
UK.22 Clonidine 25 mg is prescribed twice daily for
two weeks increased to a maximum of 50 mg three
times a day. Evidence base is contradictory, although
one study shows significant reduction in the numbers of
hot flushes and improved quality of life compared with
placebo in breast cancer survivors using 100 mg
daily.23–25 Side effects of clonidine are dose related
and at higher doses clonidine causes sleep disturbance
in at least 50% of users. It must be withdrawn gradually
as abrupt cessation can cause rebound hypertension.
22 As an anti-hypertensive, clonidine may not be
suitable for patients with a baseline low blood pressure

Selective serotonin re-uptake inhibitors
(fluoxetine, paroxetine, citalopram,
sertraline) and the serotonin
noradrenaline re-uptake inhibitor/
selective serotonin re-uptake inhibitors
(SSRI-SNRI) venlafaxine

Since paroxetine is the SSRI with the best evidence
for efficacy19,23 effective at 10 mg daily, it is the SSRI of
choice for patients not taking tamoxifen and the more
usual 20 mg dose chosen if an antidepressant effect is
also required.

Venlafaxine is the preferred treatment for breast
cancer survivors taking tamoxifen, and at 75 mg,
there is significant reduction in hot flushes with concomitant
improvement in fatigue, mental health and
sleep disturbance.2

Behavioural therapies
The North American Menopause Society (NAMS)
Statement in 2015 recommends a CBT approach that
combines relaxation techniques, sleep hygiene and
learning to take positive healthy attitude to a menopause
challenge.21,46 One study found hypnotherapy
as effective as gabapentin in hot flush reduction.48
Supporting clinical studies demonstrated the effect in
reducing women's ratings of their hot flush problems.
Additionally, clinical hypnosis was found to have better
results than a structured attention approach in
post-menopausal breast cancer survivors. CBT is also
recommended as a treatment option for anxiety experienced
during the menopause transition and postmenopause.
A CBT approach which is theory based
can have an impact on both vasomotor symptom perception
and control and reduction in stress and wellbeing,
sleep problems and vasomotor symptomatology.
There are two-way interactions between mood and
vasomotor symptoms with 10% of women more likely
to have depressed mood during menopause. There is a
fact sheet (written by Professor Myra Hunter, Kings
College London) on the Women's Health Concern website
which provides guidance on cognitive behavioural
therapy almost in a self-help format for women to access directly.49 The recent appreciation of benefit
from behavioural therapies on vasomotor symptoms
perhaps suggests that the mechanism by which SSRIs
work for hot flushes could be as a result of their direct
class effect on mood.

Treatments for breast cancer survivors
Most women diagnosed and treated for breast cancer
will live with their cancer, rather than die from it.
A common consensus is to avoid estrogen replacement
therapy for breast cancer survivors. More research is
needed into the safety of possibly using estrogen-based
therapies11 particularly in receptor negative patients
but for the moment most clinical guidelines will consider
estrogen treatment contraindicated.9 Even BrCA
gene carriers who become menopausal following
risk-reducing surgery will be guided to take estrogen
replacement only up to the age of 50.9 There are a variety
of position statements, guidelines and consensuses
for management of vasomotor symptoms in breast
cancer survivors from International and National
Societies on the value and safety of alternatives.
5,11,16,21,27 A meta-analysis of adverse effects in
non-hormonal drugs in breast cancer survivors shows
a much higher level of adverse effects with 81% of
SAEs in one treatment group compared with those on
placebo, low dose therapies and acupuncture.5 The
NAMS Consensus Statement September 2015 looks
for solid evidence of a few therapies that work so as
not to waste patients' time experimenting with things
that really do not work.21 NAMS recommends SSRIs,
SNRIs, gabapentin, pregablin, clonidine, CBT and clinical
hypnosis. The UK guidelines, i.e. NICE CG 23 and
NICE CG 80 indicate that SSRIs, SNRIs and gabapentin
are no better than placebo and that paroxetine and
fluoxetine may reduce the efficacy of tamoxifen.11 For
breast cancer survivors, NICE CG 80 recommends clonidine,
venlafaxine and gabapentin although the NICE
2015 indicates that only St John's Wort may improve
symptoms, although not recommended because of serious
drug interactions.9,11,16
Isoflavones, red clover and Black Cohosh are not
recommended for breast cancer survivors by any of
the international bodies.5,16,21,27 "

I haven't copied the whole paper but chunks of it from:

Consensus statement for non-hormonal-based treatments for menopausal symptoms Jane Woyka 2017

Looks like the anti-depressant Venlafaxine might be worth a try and especially while you wait to consult a specialist about whether you can take HRT again.

There is more info which I can't remember so will post it when I find it.

Hope this helps...and take care

Hurdity x

[CLKD]

Who is going to take the stand about trialling HRT post surgery?  It's such a firm 'no' from most medical providers  who have no idea about how menopause can impact ...........

Let us know how you get on.

[pants46]

CLKD. I love you (tho we've never met). But I think your last comment is not helpful.  Could you edit your post perhaps ? My question is asked with great respect.

[CLKD]

Love you back 

[pants46]

Hmmm ... I think I love you more 

[CLKD]

Bounced