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[Ladybt28]

Hi racjen - thanks for the info - you were posting when I was posting and we clashed!

So - just to be clear
(1) 200 on an everol patch is very high - but my observation would be that it did it's job to bring your oestrogen up from nothing to a good level.

(2) - you are now on 100 patch with 100mg Utrogestan 10 days per month vaginally on a cycle with a bleed - yes?  How long have you continued this?

(3) Testosterone - it would appear that you are right in your assumption that it may disagree wit you, if you have tried 3 kinds BUT it depends on what symptoms you are trying to get under control as to whether or not testosterone is helpful or not.

Ok so - what are your current list of symptoms and are anxiety and depression the ones that would come top of any list?

[CLKD]

It's find to have a duvet day too - I had many hours laying on the sofa simply to survive.  3 cats and a dog cuddle close or on top of me and we would doze the days away.  Give yourself some slack, not being listened to is difficult to deal with.  Do you have another appt. with the Clinic?

[CLKD]

You may have said already but which symptom would you like to ease first? 

[racjen]

With no support?  No family, friends.  No families of your daughters to talk with whilst you were going through surgery?  Who looked after them?  It adds to any stress and anxiety already present with raising children, particularly being a single parent.

I was offered the opportunity of talking with other patients at similar stages but didn't want to engage in case they didn't survive.  I didn't want to think about where I might end up.

There wasn't a dedicated breast nurse either but I had good support from the Consultant, Oncologist and their Staff. Could you go and discuss with the Staff at the Hospital or see if there is a Breast Nurse who could listen, i.e. start at the point where your body was pushed into menopause?  Explaining it as you have, it seems like you've seen lots of medics who have little knowledge of how the various surgeries can impact.

I've talked to Breast Care Nurses, oncologist, MacMillan counsellor - none of them really seem to have a clue about the role of menopause after cancer, hard to believe but true.

[racjen]

With no support?  No family, friends.  No families of your daughters to talk with whilst you were going through surgery?  Who looked after them?  It adds to any stress and anxiety already present with raising children, particularly being a single parent.

I was offered the opportunity of talking with other patients at similar stages but didn't want to engage in case they didn't survive.  I didn't want to think about where I might end up.

There wasn't a dedicated breast nurse either but I had good support from the Consultant, Oncologist and their Staff. Could you go and discuss with the Staff at the Hospital or see if there is a Breast Nurse who could listen, i.e. start at the point where your body was pushed into menopause?  Explaining it as you have, it seems like you've seen lots of medics who have little knowledge of how the various surgeries can impact.

A few friends came and went but most of the time it was just me and  my 16 year old daughter; the older one was away at University during my treatment. No family nearby, two closest friends buggered off and abandoned me - it was a very difficult time.

[CLKD]

   people get scared of the word 'cancer' ........ you have us now >wave<

There doesn't seem to be any joined up thinking in the NHS these days.  When I worked a patient's needs would be shared with all the potential Specialities.  If people attended with a problem that would require future treatment, the Consultant would attend Clinic even if the patient had to wait a while, that means that they didn't need to make another trip.

Now one often doesn't see the Consultant at a follow up appt., the patient is referred back to the GP ....... so any potential questions can't be put to the Consultant after intervention.

[racjen]

Hi racjen - thanks for the info - you were posting when I was posting and we clashed!

So - just to be clear
(1) 200 on an everol patch is very high - but my observation would be that it did it's job to bring your oestrogen up from nothing to a good level.

(2) - you are now on 100 patch with 100mg Utrogestan 10 days per month vaginally on a cycle with a bleed - yes?  How long have you continued this?

(3) Testosterone - it would appear that you are right in your assumption that it may disagree wit you, if you have tried 3 kinds BUT it depends on what symptoms you are trying to get under control as to whether or not testosterone is helpful or not.

Ok so - what are your current list of symptoms and are anxiety and depression the ones that would come top of any list?

Yes, now on Evorel 100. The utrogestan was included for about 9 months, then consultant suggested a 3 month break to see if that made things clearer. That 3 months is now up, with no change except that I'd say I've been gradually getting more anxious.
By far the most troublesome symptom is the anxiety - I'd say that the depression i'm feeling now is more a reaction to the continuation of this than down to low estrogen, anyone would feel depressed after well over a year of acute anxiety. Insomnia is the other big one but that seems to have settled down recently (maybe in the absence of Utrogestan - bit worried it'll return when I restart it). As far as testosterone goes, again it was to combat the anxiety mainly, as I've read a lot about testosterone deficiency in women causing anxiety. Not so bothered about libido, but the brief general sense of well-being was nice - had forgotten how that felt.

[CLKD]

What you need is relief and the option to feel well again.  My anxiety was phobia-led.  Depression .........  but it was grinding at the time.

When I went to the GP I wanted a cure yesterday  .........

[Ladybt28]

racjen - I have a couple of other questions.

When you were using the Utrogestan on a cycle - how was the bleed - heavy - spotting - and number of days?  You have a womb right?
Now you have stopped it - any bleed or menstrual type symptoms?

Can you talk me through the cycle of symptoms as they came and went, with your cycle when you were using the Utrogestan?  Were some more prevalent on the oestrogen only, did some get worse (was the insomnia worse or better at times or no different) or some get less on the utrogestan and how were you on the bleed for example?

Someone said you had contacted Dr Currie - are they right and if so how long ago was that?  At what point in your journey were you and what did she say? 

You had your breast cancer treatment in 2016 and then how long after did you start any form of hrt and what did they start you on, if you can remember? xx

[racjen]

racjen - I have a couple of other questions.

When you were using the Utrogestan on a cycle - how was the bleed - heavy - spotting - and number of days?  You have a womb right?
Now you have stopped it - any bleed or menstrual type symptoms?

Can you talk me through the cycle of symptoms as they came and went, with your cycle when you were using the Utrogestan?  Were some more prevalent on the oestrogen only, did some get worse (was the insomnia worse or better at times or no different) or some get less on the utrogestan and how were you on the bleed for example?

Someone said you had contacted Dr Currie - are they right and if so how long ago was that?  At what point in your journey were you and what did she say? 

You had your breast cancer treatment in 2016 and then how long after did you start any form of hrt and what did they start you on, if you can remember? xx

Oh gosh, I'm going to struggle to remember some of this. Utrogestan on a cycle - I'd say the bleed was 4 - 5 days, heavy to start with but nothing remarkable. Now I'm not on it I've been bleeding very lightly constantly for the last month or so. No period pain though.

As far as cyclical symptoms went, usually would feel quite a lot better mood wise for the first 3 - 4 days of utrogestan, then gradually I'd go downhill until I was struggling to make it to day 10. After that I'd have the usual miserable withdrawal for 2 - 3 days and then bleed. Anxiety was unchanged throughout all of this. Insomnia - stupidly I didn't make a note of any pattern and in my head it's completely random, but I suspect it was worse whilst on U.

I contacted Dr.Currie to ask specifically about my problem with testosterone, so that would've been early 2018 I think. She had no idea why it would make me depressed and was unable to offer any advice. Started HRT at my own request in june 2017 - my GP was hopeless, didn't have a clue what to prescribe so randomly put  me on Elleste Sequi (I think). Most bizarre thing was that when I started the progesterone phase of that I suddenly felt better and more myself than I have in years. That lasted one cycle and then disappeared, and the low level of estrogen made no difference at all, hence the change to Evorel patches which obviously are more alterable.

[racjen]

Sorry, somebody (forget who) asked what chemo drugs I had. I had TAC, which is T – Docetaxel (also called Taxotere) A – Doxorubicin (also called Adriamycin) C – Cyclophosphamide. Also had stuff to stimulate white blood cell production with every cycle, which was possibly worse than the chemo itself, but the name escapes me right now.

[Conolly]

Thank you, racjen.

Have you been tested for Vitamin D? Are you taking supplements? Sorry if you have already mention it.
 
Conolly X

[racjen]

I take magnesium and high strength general vitamin supplement. Haven't been tested for Vit D, would that be a good idea?

[AgathaC]

Dear Racjen,
I've been thinking about you this evening and I've done a bit of looking around. If you go on the British Menopause Society website, you'll see that they are holding a study day (aimed at nurses) on 29th April 2019 entitled “Beyond Cancer, Living with an Induced Menopause”. This is exactly your situation - yes? I wonder if you could contact the BMS and see if you could get hold of the course material (you'd probably have to pay for it) or even attend it? Presumably the course/lectures are being given by a health professional. Could you get their name and see if you could consult with them? I wonder if this could be if any help to your specific situation which no-one has been able to get to grips with so far xxx

[Conolly]

I take magnesium and high strength general vitamin supplement. Haven't been tested for Vit D, would that be a good idea?

I think so, according to this article http://cab.unime.it/journals/index.php/MJCP/article/view/1740/pdf

Conolly X