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Early enforced menopause for oestrogen positive breast cancer. Advice please.

13 REPLIES 13
Hope213
Member

Re: Early enforced menopause for oestrogen positive breast cancer. Advice please.

Hi Nameste,

Thanks for your reply. Yes just like you my GP wasn’t worried at all but said she would refer me as it was routine! I had found a lump/thickening but high up towards my collar bone so I originally thought it was muscular. Good point about the contraceptive issue and having ovaries removed, something I have thought about too 🙂 It’s great to hear that you are more or less back to your pre-cancer self with your energy levels. Thanks for the tips 🙂

Take care xxx

Nameste
Member

Re: Early enforced menopause for oestrogen positive breast cancer. Advice please.

Hi Hope213

It is reassuring to find someone else with a similar diagnosis, there seems to be an endless amount of treatment plans out there! Like you all of my tumours were small, the biggest was 18mm, smallest 8mm so like you I think I was lucky to find one of them, which I actually discovered after my initial GP appointment, I went because of pain in the breast. The GP didn't think it was serious and put me down as a Cancer not suspected referral, thank God she did.

Yes the zoladex injections leave my tummy tender for a day afterwards, I always find wearing jogging bottoms or something loose around the waist helps. 

Good luck with whatever you decide regarding the removal of your ovaries. Part of me thinks that would solve the contraceptive issue! But like you I am reluctant to put myself through more surgery, especially right now with the pandemic. Let us know how you get on on the Letrozole if you switch over. 

My tiredness has definitely improved over time. When I finished the radiotherapy last March I was at my most tired, everything was an effort. Now I would say I was more or less back to my pre-cancer self in that respect. Busy cleaning the house, cooking, running about after the kids etc. That's not to say I don't get tired days, but I think there is some truth in the 'less you do the less you want to do' saying. I have to make myself do exercise but I always feel energised afterwards. Listen to your body. I did a work out yesterday and housework, today I'm a little tired so I'm taking things easy. You don't have to be on the go every minute of every day. If it carries on you could get your iron levels checked just to rule out any anaemia. Keep eating dark leafy veg, dried apricots, and red meat for your iron, although I'm sure you're well aware of this. You can also get an iron rich liquid called Floradix if you are low, but check with your medical team if its safe for you to take.

Sending hugs to you, 

Nameste

Hope213
Member

Re: Early enforced menopause for oestrogen positive breast cancer. Advice please.

Hi Nameste,

Thank you for your advice. I’m sorry you are on this journey too, before my diagnosis I never realised how many different types of diagnosis people can have. It’s reassuring to know that your diagnosis is so similar to mine and that our treatment is going the same way.

I have now had 2 Zoladex injections. I found them more painful than a usual type of injection but the pain is only for a few seconds so I could cope with it. Although I did feel sore in my tummy for a few hours after the injection. At my next appointment I’m having a blood test to see what my hormone levels are like which will help discussions about switching me to Letrozole. Having my ovaries removed has also been mentioned. I had a mastectomy with reconstruction in Covid times so I’m put of having any more surgery at the moment. So I’m just going to wait and see for now how things go with the injections.

Good point about getting pregnant though, my lovely breast cancer nurse had mentioned this to me 🙂 I’m already taking vitamin D along with cod liver oil. I also started getting dry skin after zoladex so my oncologist suggested evening primrose oil, this has really helped! It helps some people with hot flushes too. I’m finding I am so tired at the moment.I haven’t yet gone back to work. Do you think your tiredness level has improved over time?

take care, thank you for sharing your journey so far x

Nameste
Member

Re: Early enforced menopause for oestrogen positive breast cancer. Advice please.

Hi Hope213

I've just been reading through your posts and can see you have started on the zoladex injections I do hope they are going OK for you?

Worth adding (incase you don't already know) that there is a chance you can get pregnant on the Zoladex injections even when your periods stop.

I had a DEXA bone scan before I started the Zoladex and my bone density was fine, I should have another in a couple of years. I have also started taking 15mg of Vitamin D3 daily to help protect my bones. 

Like you my cancer was highly oestrogen sensitive, and biggest tumour was 18mm but the grade 3 was only 12mm.  My chance of recurrence with hormone therapy is 4%, so fingers crossed the hormone therapy works.

I'd love to hear how you are getting on, good luck with it, sending hugs

Nameste

Nameste
Member

Re: Early enforced menopause for oestrogen positive breast cancer. Advice please.

Hi Hope213

I'm sorry to hear that you are on this journey at a young age too. I could have been reading about myself when I read your post. I was diagnosed at 43, in Nov 2019, with 3 tumours (2 were grade 2 and one grade 3) but no lymph nodes affected so stage 1. I didn't need chemo either as a result if the oncotype DX score just rads.

I started zoladex injections to put me into an early menopause last October and am tolerating them really well. The needle is big but I can honestly say it doesn't hurt going in, so don't be anxious about it, I'm sure you will be fine. I did have periods for the first two months and then nothing from the third month onwards. The plan was to go for an oophrectomy but to delay it due to the pandemic, but as time goes on I'm becoming more reluctant to put myself through more surgery. I'm on Tamoxifen rather than Letrozole so can't comment on that. But as far as menopausal side effects go it is mainly hot flushes for me. Worse at bedtime, flinging the covers off etc, but they are starting to calm down a little bit now. My biggest fear was mood swings, but I do feel my moods have been pretty stable (my other half would probably tell you differently). I felt much more emotionally out of control just before my cancer was diagnosed, probably because my hormones had gone hay wire.

I do have a lot of tiredness but that is so difficult to pin down what is causing it, could be just lockdown fatigue! 

The other side effect I have noticed is hair thinning. So I tend to just wash mine once a week and treat it gently. I don't straighten my hair every day now like I used to. My GP advised caffine shampoos but I haven't tried them myself.

I don't get much joint pain at all if any, I find exercise and yoga helps to keep little aches and niggles at bay.

My team wanted me to go onto Letrozole to begin with too, as a 'belt and braces' approach. Don't forget you can always switch e.g do 2-3 years on Tamoxifen and then switch to AI's. Ultimately it is your choice and what you feel most comfortable with.

Wishing you all the best 

Nameste

Seabreeze
Member

Re: Early enforced menopause for oestrogen positive breast cancer. Advice please.

Hi Hope123,

Great to hear your got the clarification and answers you needed, and had such a useful discussion with your oncologist to mutually agree the best approach for you. 

Thank you so much for your update and lovely thank you messages - it's good to be able to help (and good to know it helped)!

Wishing you all the best with the next steps of your treatment.

Seabreeze x

.  

Hope213
Member

Re: Early enforced menopause for oestrogen positive breast cancer. Advice please.

Hello seabreeze,

I had a really good appointment with a medical oncologist yesterday who answered all my questions. He took time to really explain the Oncotype DX results to me. I actually have invasive breast cancer with a margin of DCIS around each tumour, stage 1 but grade 3. I hadn’t realised this before, I just thought I had DCIS. He said my best outcome would be to switch off my ovaries as my cancer is highly fuelled by oestrogen (8/8). I will be starting the Zoladex injections shortly. I asked about Letrozole/Tamoxifen and explained my concerns and he said he would recommend me starting immediately on Tamoxifen and can consider switching later, if needed, to Letrozole. I feel much happier about this plan now I understand more about why. My Oncotype DX showed only a 5% chance of recurrence of chancer if I have hormone therapy. I misunderstood this last time and thought this was 5% generally without any further intervention. I thought I would let you know how I got on, and to thank you again for giving me great advice.

Take care x

Hope213
Member

Re: Early enforced menopause for oestrogen positive breast cancer. Advice please.

Thank you so much, you have raised some really important points for me to ask.  I’m definitely the kind of person that needs to understand everything. You have really helped me, thank you for taking the time to do so.

xx

Seabreeze
Member

Re: Early enforced menopause for oestrogen positive breast cancer. Advice please.

Hi Hope,

While DCIS is thought of as the very early stage cell changes (which can go on and become invasive), I understand grade 3 can grow more quickly and the chance of recurrence can be higher, so coupled with the multiple areas you might be right re that being why your onc suggested stopping the ovaries. 

I can't answer your q re chances, and guess its worth finding out a bit more from your onc, perhaps by asking things like:

  • Have there been any studies, trials, or are there any statistics, which indicate how much difference having the ovary switch off and Letrozole would make compared to just taking Tamoxifen? (Make it clear that you understand it's not possible for them to give you a precise figure, but what sort of chances are they typically talking of, for a woman with your age and diagnosis). 
  • If you were to have the ovary switch off and Letrozole, and within 2 or 3 years etc start to notice side effects (or have any loss of bone density) would it be possible to take another medication, or even stop and switch the ovaries back on and take Tamoxifen? Make it clear you are trying to weigh up the pro's and con's re both approaches re risk of recurrence v s/e on quality of life particularly bone density, joints etc given you are relatively young.    
  • If you were to get side effects such as some loss of bone density or joint problems, when would these be likely to start appearing? If you take Letrozole would your hospital team carry out bone density scans and if so how often? I.e. would any such changes be picked up early?

Given the change in your onc's thinking re approach, and your current questions about pro's/con's, I think finding out a bit more would help you to feel better able to make a more informed decision. 

It might also be worth calling the nurses at BCN and asking if they've heard of women with your type of diagnosis being advised to have the ovary switch off and a chat about pro's con's etc. 

Please bare in mind you might have to push your onc a bit to get more info - my breast care nurse once said of those diagnosed with breast cancer, 1 in 3 tend to just hear bc (and don't really hear any more - they just want it treated), 1 in 3 think they want to know details, but actually don't (or get more worried/confused/stressed by this), and 1 in 3 genuinely want to know more info (it makes them feel better about what's going on). So it must be pretty difficult for onc's to judge what level of info is right any individual particularly at the beginning of a bc journey.     

Hope you get the info you need to work out what's best + hope the above isn't too much info.

Seabreeze x

 

 

  

Hope213
Member

Re: Early enforced menopause for oestrogen positive breast cancer. Advice please.

Hello seabreeze,

Thank you for your reply and all the information. Initially I was told I was likely to have Tamoxifen and I understood how this was the best medication for me to have as I am pre menopausal. 

My onocotype DX result showed a low chance of breast cancer reoccurrence but he said if it did return it would grow quickly because of being so oestrogen positive. The biggest of my 3 tumours was only 13mm (with an area of DCIS around it making it 20mm) but they all came back as grade 3. He has told me throughout that I did well to find such a small tumour. I only found 1, the other 2 were found on an ultrasound and breast MRI scan, they were so small and due to my breast dense tissue they were not picked up on a mammogram. So I’m guessing he is thinking they would be hard to quickly detect should breast cancer return.

Yes he has suggested taking Letrozole once I’ve had the enforced menopause, which he described as switching my ovaries off. This would be done through a monthly injection of another drug and in time I could have my ovaries removed. Then at some point start Letrozole as you can only have this post menopause, my ovaries wouldn’t be producing oestrogen so it would be targeting my fat cells.

From reading up, I do prefer the sound of Tamoxifen and yes I think I need to have a further discussion with him. How much of a benefit would an enforced menopause be followed by Letrozole as opposed to just taking Tamoxifen? I definitely need to understand this more especially given the amount of side effects.

Well done in questioning things and I’m pleased to hear you have stayed on Tamoxifen. I never knew the treatment for breast cancer had some many different paths!

I will keep you informed. Glad to hear you are 6 years on and doing ok 🙂

Thank you 

 

 

Seabreeze
Member

Re: Early enforced menopause for oestrogen positive breast cancer. Advice please.

Hi Hope,

I was a similar age to you when I was diagnosed with a fair sized invasive ductal carcinoma lump (plus a separate patch of DCIS). They didn't carry out the oncotype test as standard 6 years ago, however I was told I was borderline chemo but that it was not recommended by my onc, hence op and 20 x radio including boosters plus hormone therapy since oestrogen positive.

I was prescribed Tamoxifen, initially for 5 years. With the results of further research coming out at the 5 year check up point it was recommended that I have a further 5 years of hormone therapy. Periods had gone a bit gappy within a few months of starting Tamoxifen (which I understand is quite common). By the time of my 5 year review, the gap had been rather ever extending, so I was told I would need to change to Letrozole instead (by a locum I had never seen before, who knew less about the studies re pro's and con's of taking Tamo for the extra 5 years than I did).

Having done 5 years of Tamoxifen and considering that a further 5 years of hormone therapy at that stage of treatment would give some, but for me, statistically not mega amounts of benefits re bc, I wasn't keen on taking Letrozole due to the risk of  impact on bones (impacts on bone being high on my radar after having had a secondary cancer scare (highly suspicious.....thankfully turned out to be old fractured ribs).

After telling the locum my periods had been mega gappy for the 5 years on Tamoxifen, he somewhat begrudgingly sent me off for a blood test to check my hormone status. Which came back showing I was not menopausal and therefore was best continuing to take Tamoxifen (rather than Letrozole). Personally, I was relieved to hear that.

Perhaps try to get more info from your onc as to why they recommend Letrozole over Tamoxifen for you.

  • As far as I'm aware Letrozole doesn't 'switch off' ovaries (see last line of extract from BCN leaflet below - link as attached) 
  • Letrozole works better than Tamoxifen at reducing oestrogen produced by cells in your body such as fat cells from reaching your breast tissue in women who are post menopausal.
  • Whereas Tamoxifen is better at blocking oestrogen from latching onto receptors in your breast tissue and hence generally seems to be thought best for women who haven't gone through the menopause i.e. where the prime source of oestrogen is the ovaries. 

If that's where the hesitation and change of oncologists mind from Tamo to Letrozole is, it might perhaps be worth asking if they think it would be helpful for you to have a blood test to determine hormone levels re which is best? 

Or are they planning on giving you a different combination of med's to close down your ovaries, as well as giving you Letrozole - see links below and extract from the last leaflet on oestrogen suppression. (These are all from the main BCN website - info, publications, search) 

Hormone therapy - general
https://breastcancernow.org/information...treatment.../hormone-therap
Re Tamoxifen
https://breastcancernow.org/...treatment.../hormone-therapy/tamoxifen
Re Letrozole
Re ovarian suppression 
Extract - 5. Different types of ovarian suppression

Ovarian suppression can be achieved by:

  • hormone therapy (drugs) – usually monthly injections
  • surgery

Your specialist team should help you decide which is best for you. Using hormone therapy is the only way of achieving ovarian suppression that may not be permanent. This may be something to consider when making your decision, especially if you want to have children.

Hormone therapy

Some drugs stop the ovaries from making oestrogen. They interfere with hormone signals from the brain that control how the ovaries work. 

  • Goserelin (Zoladex) is the most commonly used drug. It comes as an implant (a very small pellet) in a pre-filled syringe. It’s given as an injection into your abdomen (tummy) once a month. Find out more about how goserelin is given.
  • Leuprorelin (Prostap) is given as an injection once a month, or sometimes every three months.
  • Triptorelin is given as an injection once a month.
Ovarian suppression combined with tamoxifen or aromatase inhibitors

If you are having one of the above injection for ovarian supression this is often combined with another hormone therapy such as tamoxifen or drugs known as aromatase inhibitors. Research has suggested this may reduce the risk of the breast cancer coming back for some premenopausal women who have had chemotherapy.

There may be a small extra benefit having an aromatase inhibitor over tamoxifen but there might be different side effects to consider that can affect your quality of life. Your specialist will help you discuss the possible benefits and side effects.

Aromatase inhibitors are not used on their own as hormone treatment in premenopausal women because they are not an effective treatment while the ovaries are still making oestrogen, but they can be given alongside goserelin, leuprorelin or triptorelin.  Your specialist team will discuss with you what they recommend and why. 

---
I the above helps and would be interested to know which path of treatment you end up on.
 
Sending a hug - I know all this can be a tad confusing at times re what/why! All I can say is the locum would have put me on Letrozole (if I hadn't pushed that I didn't think I was menopausal and the blood test been done). Should add that's been my only negative experience, usual onc's great.
 
x Seabreeze (Now over 6 years on and doing ok) 

  

Hope213
Member

Re: Early enforced menopause for oestrogen positive breast cancer. Advice please.

Thank you for your reply. It’s great to hear that the enforced menopause bit has been fine and to hear about your experience. Good news about your skin too 🙂 sorry to hear about your joint stiffness, I wonder if this will ease over time. Fingers crossed it will.
Take care xx

mel71
Member

Re: Early enforced menopause for oestrogen positive breast cancer. Advice please.

Hello, 

I was diagnosed in April 2020 grade 3 ER+ Had surgery in May. 

Oncotype was 19 and I decided no chemo. I had 20 radiotherapy treatments. I started Zoladex injections which I have every 28 days and letrozole. I’ll have Zometa infusions every six months (I’m 48) 
The enforced menopause bit has been fine.  No periods after I had the first Zoladex. My skin which had been spot prone around period time is amazing 🤣 I have to say letrozole is hard work but the alternative is worse! I have joint stiffness which is the worst side effect for me. I had an oncology appt a few weeks ago and hope the letrozole will be for five years 🤞

Mel XX  

Hope213
Member

Early enforced menopause for oestrogen positive breast cancer. Advice please.

Hello,

In October I was diagnosed with breast cancer, stage 1 but grade 3. I had 3 tumours. In November I had a mastectomy with Immediate implant reconstruction. My results showed I’m oestrogen positive. I am due to have radiotherapy. chemotherapy showed to be less than 1% effective for me on my Oncotype DX result so I’m not needing to have chemo.

I wondered if anyone can help regarding the hormone therapy. I am 43 years old and my consultant has suggested ‘switching off’ my ovaries and putting me into an early menopause so I can then have Letrozole. He has warned me about many side effects of an early enforced menopause and then the side effects of taking Letrozole for 10 years. Initially he had suggested I was to have Tamoxifen but now seems to favour Letrozole.

Has anyone else been in this situation? How did you find the early enforced menopause? How was Letrozole?

Any advice would be greatly received.

Thank you so much. X