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[GypsyRoseLee]

Long story short, starting on 4 pumps + Testogel + 100mg of Utrogestan 7 days per month saved me from a hellish peri menopause,  and dreadful mood swings where I was so depressed that I was suicidal.

Fast forward through 4 much happier and stable years and I get a very shock diagnosis of early invasive ductal carcinoma at my very first mammogram - invited for one as I'm 50 this year. Obviously my breast surgeon told me to stop HRT but when I explained how serious my symptoms had been he told me 'it was my choice' and that QOL was important too. But he still wrote to my GP saying he had told me to stop HRT and my gel has since been removed from my repeat script - luckily I have about 6 months of estrogel in a drawer...

Anyway, I had my surgery last week, recovering fine and waiting for pathology results in one week. Keeping everything crossed that he got clear margins with no node involvement!!! My new boob is now a 34E (was 34G) and much perkier, he's done an amazing job - he'll do the other to match after radiotherapy.

Anyway, my question is - over the last 10 days I have slowly titrated down from 4 pumps to roughly 2.5ish. So far no adverse effects. Mood as normal. Feel quite tired and drained but that could be the surgery as I was under for about 3.5 hours. But mainly *mood is normal*!!!

I'm prepared to slowly titrate lower just to see what happens, so has anyone else found they needed less Oestrogen as they turned 50? This would kinda make sense that I won't need as much as I did at 45?

But breast cancer aside, I am very concerned about protecting myself against heart disease, osteoporosis and dementia all of which are very prevalent in my family. And it's only oestrogen that can truly do that for me.

I do know that both Nick Panay and Louise Newson can and do prescribe HRT for BC survivors, so they are an option for me. But I'm so torn as to which way to go.

[CLKD]

So pleased 4 your update 

I would now wait.  Let your hormone levels settle for at least 7 days.   You have been through major surgery.  GA can have a reaction about 10-14 days after surgery, I got very tired 10 days after my appendix was removed  .  Felt OK then suddenly, wham: I slept for 2 days 

The body may take a while to recognise any alterations in hormone levels.  Don't rush as you don't want to go back. 

Once you begin to recover from surgery: and after you have had the results: you can think about over-all health requirements.  Osteoporosis can be eased by regular brisk walking.  Impact exercise keeps the bones healthy.  It promotes any repair necessary and encourages new fresh bone growth, as well as keeping present bones healthy.

What was the particular heart disease and how close were family members?  Maybe in a few months ask for a referral to a cardiologist?  He/she should be able to access relevant medical records to see if you need anything specific.  Dementia ........ how long is a piece of string 

 

[Maryjane]

Wishing you all the very best to help you make a decision read a book called Oestrogen matters by Avrum Blumin & search Professor Micheal Baum both BC experts & both are advocates of using HRT &?research papers ? that never see the light of day regards the incorrect information regards HRT at the end of the day it's about informed choice & QOL.

My gynae has women who have had oestrogen receptive breast cancer on HRT regards the heart & bones risk being greater but as said this must be your researched & informed choice.

[Wrensong]

So pleased surgery is behind you GRL & that you are pleased with the cosmetic outcome.   

But breast cancer aside, I am very concerned about protecting myself against heart disease, osteoporosis and dementia all of which are very prevalent in my family. And it's only oestrogen that can truly do that for me.

I do know that both Nick Panay and Louise Newson can and do prescribe HRT for BC survivors, so they are an option for me. But I'm so torn as to which way to go

There is life after BC & that women continue to have to deal with what can be very severe menopause symptoms & consequences creates a dilemma that is far from straightforward.

Only you can make the decision GRL, but my advice would be to keep talking with your breast care team & research for yourself as much as you can, using up to date sources you know to be trustworthy, so that you are as informed as you can be.  As your treatment progresses & your response to it becomes known, the advice from your team of breast experts may also evolve.

The Avrum Bluming book mentioned by Maryjane is certainly an eye opener & a good read for anyone facing this dilemma.  But all cases are individual so I think it's important to discuss in depth with those who know most about your particular situation.

Wishing you clear margins & as easy a journey as possible through whatever stages of treatment are to follow.
Wx

[GypsyRoseLee]

Hi Mary Jane. I have just read 'Oestrogen Matters' and it's really got me thinking, and I have printed off about two dozen research papers all saying that taking HRT after breast cancer doesn't increase risk of reoccurance, but still I feel very conflicted! I always thought I was so enlightened about HRT!

Interesting that your gynaecologist believes that heart disease and osteoporosis carry a greater risk than the reoccurance of another breast cancer, too?

[Wrensong]

GRL, it's said that more former BC patients go on to die from heart disease than from BC.  I assume a factor in that is that most will never (again) take HRT & some will be on oestrogen blockers like Tamoxifen, which as we know have their place in treating BC, though they are not prescribed for all variants. 

You have found for yourself, as I did when researching the topic, the numerous studies that have found no detriment in HRT use after successful treatment of BC, but this has yet to inform mainstream opinion.  Truth is, I think, that the incomplete state of knowledge makes for a very difficult & worrying situation for those of the 1 in 8 women who get BC who are also plagued with debilitating menopause symptoms & need to decide what to do about it.  Between a rock & a hard place.

My heart goes out to you. 

[dangermouse]

So glad that your op is over and it went well.

I remember when I used to be on the pill many years ago that there were always news stories about it causing some cancers but then the next day they'd be another about it being protective against another. I suspect that the way cancers can develop are too complex to be that specific. With heart disease and osteoporosis it's often genetic and I suspect the protective role that oestrogen plays will only go so far in making a difference.

Most research done is normally from a drug companys own interest, even the Menopause Society have vested interests in HRT through funding grants.

My point being is that you should go by your own needs and experience rather than the latest research and statistics. I think studies can be useful in large scale planning but can, conversely, cause a lot of stress for an individual to base decisions on.

If you haven't yet tried the AD alone I would certainly want to know if it was that which had been making me feel better, so as not to feel over reliant on the HRT. This may be a good time to test it. Your hormone volatility may also have naturally calmed down now so you may need a much smaller dose of HRT if the 4 pump regime was mainly overriding your own cycle.

If it was me I would cut down to none and see how I feel for a few months on the AD alone. You would probably go through some hot flushes but they may be temporary but you'd know how your mood is which, I would say for most of us, is the big one.

You have all your meds so you can easily go back on it, maybe now at the lower dose, whenever you need to.

Hope that helps to give another way of looking at it all.

[Wrensong]

Dangermouse

Most research done is normally from a drug companys own interest,

- you make a good point & one a PhD friend working in Big Pharma for 30 years has also made, saying the lay person cannot know the motive for research in most cases.  Doesn't stop us wanting to learn as much as we can though, when we are in that very hard place.

[CLKD]

Were lymph nodes removed GRL?  I had 5 or 9 [can't remember] during the 2nd op to check that the whole lump had been removed and to determine which treatment route was necessary: a rest for a few weeks followed by 4 weeks of radiation treatment.  I gave up the Taxmoxifen as it made me ill  - that was in 199?5 ........ >wave<

Don't be surprised if you aren't really really tired for a while.  Be kind to yourself.  Plenty of afternoon TV to doze in front of ;-)

[Hurdity]

Hi GypsyRoseLee

Just to say so pleased that your surgery went well and you are feeling upbeat at the moment and especially moodwise. I can't answer your questions about BC but in terms of oestrogen dose - the amount needed is the dose it takes for your to feel well for most of the time. The thing is once you are post-menopausal then your own cycle won't be getting in the way - so you won't get those frightening dips in mood as a result of the massive drop in oestrogen, that you used to get - so maybe you are now getting to be nearer post-menopause? If this is the case, then you can just keep the oestrogen level stable at the dose needed for you to be on an even keel and in a positive mood, if that makes sense, provided that you have the OK to continue.

If you decide against carrying on with the oestrogen then as dangermouse says there are some anti-depressants which are recommended for menopausal symptoms for those who have recovered from breast cancer. There was a paper published - I think I reproduced it on here somewhere and can look it out if you want? Possibly the one with best evidence for efficacy to treat hot flushes was Fluoxetine - but might have been the other similar one Paroxetine (not sure if sp!)?

Best wishes for your continuing recovery and treatments...

Hurdity xx

[Ann B]

I thought I would try and resurrect this thread because there is mention of hormone therapy after breast cancer surgery.

I am 3 weeks post lumpectomy and exploring what my care plan options are.  I had a surgical menopause and have been on low dose Estraderm patches for 19.5 years, which I discontinued.
 
I have read Avrum Bluming's book and a number of other research papers and believe that resuming the low dose patches in conjunction with Tamoxifen could be a possibility.  The other strategy I am currently considering is surgery and RT only.  However, I think you have to be quite brave to go down either of these routes, and I am not sure I am!

The above considerations are not just to avoid potentially debilitating symptoms, but also to protect my bones, brain, and heart, etc.  I am quite scared regarding the effects of AIs on bone etc.  I don't want to take a cocktail of other harmful drugs like bisphosphonates just so that I can take an AI.  QOL is also important to me.

I would like to hear of others' experiences and regimes, post breast cancer.

Ann B

[CLKD]

What was the lumpectomy result, did you have lymph nodes removed?

Quality of Life is important.  Which symptom would you like to ease first?  MayB give your body a rest B4 thinking of HRT but do lots of exploring in the mean time.   

[Ann B]

Hi CLKD

Thanks for your reply, and the virtual flowers

Fortunately, I have had a good result.  I had 4 lymph nodes removed.  There was no LVI or node involvement, plus I had clear margins.  I am PT1N0, Grade 2.

I discontinued the low dose Estroderm patches 6 weeks ago and to date, surprisingly, I have noticed very little difference other than a warm feeling for about a couple of minutes each evening.  If this continues then I do not have much by way of symptoms that concern me at the moment.  What does worry me, is the actual negative effects that AIs will have on my bones, joints, brain, and on my cardiovascular system.  I also have an inherited eye condition, for which I have had recent surgery.  All the drugs including bisphosphonates are detrimental in this context.

Of all the drugs, AI's really scare me, and the concomitant need for bisphosphonates, which can also be detrimental.  Tamoxifen is bone protective and thus bisphosphonates can be avoided.  Tamoxifen can also 'possibly' be taken in conjunction with low dose oestrogen, unlike the AIs.

The American oncologist Avrum Bluming presents a fairly convincing and research-supported case for taking oestrogen with Tamoxifen.  However, I don't know if I have the courage to go down this route, as my cancer was ER 8+.  Surgery plus R.T. only, may be a safer bet, but according to Avrum Bluming my bones will deteriorate quite quickly over time, due to lack of oestrogen.  I have gone through a surgical menopause.

I like to get all my ducks in a row prior to a subsequent oncology consultation.  Apart from this I have been asked if I want to participate in the Prime Trial, where RT is excluded and so treatment would only be surgery + drugs.  If like you, I found that I could not continue with Tamoxifen, and currently Ais are anathema to me for the reasons stated, then that would leave me with just the surgery.  It is all quite perplexing!!!

It may be a tall order and difficult to achieve but I am trying to balance QOL and OS whilst trying to minimise recurrence, as best I can.

I went against mainstream medical thought 20 years ago when I did my own research on oestrogen therapy after a surgical menopause, and concluded that the risks were absolutely minimal.  I have had  20 years of a good QOL as a result.  I also do not believe that my BC resulted from this decision.

I have done quite a bit of reading re my current situation, but I am looking for input from others who have gone down this route after BC, or who have some insights and advice.

Ann B

P.S.  Did you try opting for lower dose Tamoxifen ie, between 2.5mgs to 10mgs per day, when you were having a negative experience?