Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: cazjen44 on April 19, 2019, 06:54:24 PM
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Just had the worst 2 weeks of my life. If last year wasn't bad enough trying to find a replacement HRT to Prempak C which I'd been on 16 years and trouble free, I discovered a lump in my left breast 2 weeks ago.
I went straight to GP, who referred me under 2 week rule to breast clinic and I had mammogram, biopsy and this week I was told I had a 2.5cm cancerous ER positive lump! Right breast ok and no lymph node involvement! I'm due for surgery next Wednesday for lumpectomy! I am absolutely DEVASTATED!
I rang my menopause specialist doctor to update her and she's told me to stop HRT straight away. I can't just go 'cold turkey', as did that last year (stupidly) as I got sick of GP messing me about with different HRTs and not really knowing what she was doing! I've started to wean off this week and will continue to do so post surgery. I specifically asked my menopause doctor back in Oct what the risk of breast cancer was, she said it was low because I would be on a low dose oestrogen >:(
I need guidance on how to wean having been a long term HRT user, thanks to having ovaries removed when I was 31 years old. I am now 48. I need guidance on what alternatives there are to oestrogen to keep me sane!
I've been on the following preparation for 6 months, which was working and I felt so much better - 1mg Sandrena gel daily, oral Utrogestan at night daily, and every other day a half pump of Tostran gel.
My symptoms last year, because I went cold turkey, were extreme to say the least. The most troubling were light headedness, BPPV, extreme fatigue and anxiety. These did improve quickly on the new HRT regime but BPPV needed ENT visit to fix! I don't want BPPV back let alone anything else! I can't and won't go back to this dark place again!
I think my menopause doctor was shocked when I told her, but to be honest she should be helping me further and coming up with a weaning plan/alternative to HRT. I'll probably ring her again after the bank holiday weekend. She just said I must stop immediately.
I've resigned myself to the fact that I will have to come off HRT. I've never ever had one lump, bump or scare in 16 years. Obviously the daily dose of oestrogen gel I was using was too much but that's what I was told to do! Its triggered a nasty growth in my breast.
What will happen to my womb aswell if I stop using HRT? Will it just shrink and wither?
Can I still use a 'dab' of Tostran testosterone gel every other day without the other 2 hormones - oestrogen and progesterone? Tostran has certainly given me my spark back and a bit more energy!
I will be having a 3 week course of radiotherapy 5 weeks after surgery and will be started on Tamoxifen post surgery which of course is an oestrogen blocker, but what I don't understand why I would need an oestrogen blocker when my body no longer produces oestrogen naturally due to having ovaries removed 16 years ago. I'm stopping HRT anyway. Does Tamoxifen block all hormones or just oestrogen? I've already read up about the side effects of Tamoxifen :'(
What alternatives are there to oestrogen?
I still need a quality of life.
Sorry to ramble but I am absolutely scared to death and freaking out. Life is certainly giving me a kicking. I was feeling so much better. DEVASTATED. Can't quite believe this is happening to me..bit of denial going on although it's sinking in slowly.
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Cazjen, I'm afraid I don't have any of the answers you are looking for. But I noticed today, that a lot of the ladies that are very well informed haven't been posting (I guess they are away or with family).
I didn't want you to think that your post hadn't been noticed or that no one was going to reply, particularly at this difficult time.
Thinking of you, and someone with answers will come along soon.
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So sorry to hear your news, such a shock for you. You must feel so overwhelmed.
My sister in law stepped in similar shoes this time last year, but a year on her treatment is successfully completed and she's off on holiday for the Easter Break.
Take it slowly and be guided by the process in place to treat your breast cancer. Take all the support offered to you along the way.
It's hard to advise re HRT because you know already that the doctors want you off the hormones - I wonder if any symptoms will come whether you reduce slowly or stop altogether.
My heart goes out to you as I know how reliant I feel on my HRT.
Hopefully others who may have experience of stopping HRT will comment too- in the meantime focus on yourself and do whatever you need to get through.
Take care x
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Hi Cazjen
So sorry that you have this diagnosis and then trying to come of HRT. It sounds a lot to take in and must be so overwhelming . I don't know enough about reducing the hormones but there must be something that will help. It sounds a lot to just stop. Keep talking on here and to your family. You are not alone xxxxx😙😗
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Just had the worst 2 weeks of my life. If last year wasn't bad enough trying to find a replacement HRT to Prempak C which I'd been on 16 years and trouble free, I discovered a lump in my left breast 2 weeks ago.
I went straight to GP, who referred me under 2 week rule to breast clinic and I had mammogram, biopsy and this week I was told I had a 2.5cm cancerous ER positive lump! Right breast ok and no lymph node involvement! I'm due for surgery next Wednesday for lumpectomy! I am absolutely DEVASTATED!
I rang my menopause specialist doctor to update her and she's told me to stop HRT straight away. I can't just go 'cold turkey', as did that last year (stupidly) as I got sick of GP messing me about with different HRTs and not really knowing what she was doing! I've started to wean off this week and will continue to do so post surgery. I specifically asked my menopause doctor back in Oct what the risk of breast cancer was, she said it was low because I would be on a low dose oestrogen >:(
I need guidance on how to wean having been a long term HRT user, thanks to having ovaries removed when I was 31 years old. I am now 48. I need guidance on what alternatives there are to oestrogen to keep me sane!
I've been on the following preparation for 6 months, which was working and I felt so much better - 1mg Sandrena gel daily, oral Utrogestan at night daily, and every other day a half pump of Tostran gel.
My symptoms last year, because I went cold turkey, were extreme to say the least. The most troubling were light headedness, BPPV, extreme fatigue and anxiety. These did improve quickly on the new HRT regime but BPPV needed ENT visit to fix! I don't want BPPV back let alone anything else! I can't and won't go back to this dark place again!
I think my menopause doctor was shocked when I told her, but to be honest she should be helping me further and coming up with a weaning plan/alternative to HRT. I'll probably ring her again after the bank holiday weekend. She just said I must stop immediately.
I've resigned myself to the fact that I will have to come off HRT. I've never ever had one lump, bump or scare in 16 years. Obviously the daily dose of oestrogen gel I was using was too much but that's what I was told to do! Its triggered a nasty growth in my breast.
What will happen to my womb aswell if I stop using HRT? Will it just shrink and wither?
Can I still use a 'dab' of Tostran testosterone gel every other day without the other 2 hormones - oestrogen and progesterone? Tostran has certainly given me my spark back and a bit more energy!
I will be having a 3 week course of radiotherapy 5 weeks after surgery and will be started on Tamoxifen post surgery which of course is an oestrogen blocker, but what I don't understand why I would need an oestrogen blocker when my body no longer produces oestrogen naturally due to having ovaries removed 16 years ago. I'm stopping HRT anyway. Does Tamoxifen block all hormones or just oestrogen? I've already read up about the side effects of Tamoxifen :'(
What alternatives are there to oestrogen?
I still need a quality of life.
Sorry to ramble but I am absolutely scared to death and freaking out. Life is certainly giving me a kicking. I was feeling so much better. DEVASTATED. Can't quite believe this is happening to me..bit of denial going on although it's sinking in slowly.
Really sorry to hear that. At least it hasn't spread to the lymph nodes. I can't advise you about stopping HRT because I have only just started it but hopefully someone can help you.
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What a shock for you but if your specialist has said stop HRT straight away then I'm afraid that's what you should do. Yes it will be tough but you need to starve the tumour of oestrogen as quickly as possible. Weaning off is not a safe option for you so please do as suggested. As for Tamoxifem this is quite an old drug now and there others available. Friends of mine have not had any side effects from either Tamoxifem or the others so it's not guaranteed that you will. The body produces oestrogen from, I think, fat cells even when ovaries have been removed.
Good luck with your treatment. Keep posting as we will all support you as best we can.
Taz X
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What a shock for you but if your specialist has said stop HRT straight away then I'm afraid that's what you should do. Yes it will be tough but you need to starve the tumour of oestrogen as quickly as possible. Weaning off is not a safe option for you so please do as suggested. As for Tamoxifem this is quite an old drug now and there others available. Friends of mine have not had any side effects from either Tamoxifem or the others so it's not guaranteed that you will. The body produces oestrogen from, I think, fat cells even when ovaries have been removed.
Good luck with your treatment. Keep posting as we will all support you as best we can.
Taz X
Does that only apply to systemic HRT or also to Vagifem?
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As far as friends experiences go then breast cancer diagnosis doesn't mean you have to stop Vagifem but I don't know whether this is across the board.
Taz x
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No advice to offer but I just wanted to say I'm so sorry. I hope you can find a way through it.
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Cazjen, I just wanted to let you know that I was diagnosed with breast cancer almost 3 years ago - found a lump in my breast which was very quickly found to be malignant, although in my case triple negative so not driven by any hormones, and in any case I'd not reached the menopause at that point so no HRT involved. But I do know the absolute shock and terror that comes with such a diagnosis out of the blue - it is truly awful and my heart goes out to you. I had a mastectomy, as at 3cm the lump was quite big (and breast quite small), followed by chemotherapy and radiotherapy. I won't deny that it was quite an ordeal, but nearly 3 years on I'm still clear and my prognosis is good.
You've been advised to stop HRT now and I guess this is sensible advice, but you shouldn't assume that the HRT caused the cancer - there are numerous different factors involved which no-one really understands fully, and no specialist can say categorically that HRT caused it, anymore than they can say it was your diet or hereditary factors. You'll never know. And you also shouldn't completely rule out returning to it later on - it all depends on your quality of life after the treatment. As far as tamoxifen goes I think you should question that - I know plenty of women who decided to turn it down as they didn't feel the benefits were worth the side-effects.
Good luck with your treatment, and feel free to PM me if you need info or a shoulder to cry on xxx
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Hi Cazjen44, so sorry to hear your news which is naturally a terrible shock for you. I know it all feels very scary at this stage & there is a lot to take in, but it is good news that there is no lymph node involvement, your surgery has been arranged without delay & will soon be behind you. Lumpectomy with Radiotherapy is now the gold standard for primary growths small enough to treat conservatively & this combination has a good success rate.
Annamuller has just posted links I had been looking for on alternatives to HRT, but had found for some reason I couldn't access the detail online or find my printed copies. Those prescription meds I remember which may help vasomotor symptoms include Venlafaxine, Clonidine, Gabapentin/Pregabalin & some of the SSRIs. Your GP should be able to help you decide which of these may be most suitable.
As Taz says, I'm afraid it is usually advised to stop HRT immediately to avoid the possibility of fuelling further growth & I think this includes Testosterone. Your breast care team may agree to your using topical HRT for symptoms of VA, but may want you to wait until you have the all clear after surgery & subsequent treatment. Your surgeon &/or oncologist will be best placed to advise on this & if you feel you need it, you could perhaps ask your surgeon when you see him/her prior to surgery next week.
As Taz also says, even without ovaries, fat cells can be a source of oestrogen, so Tamoxifen &/or aromatase inhibitors are prescribed for some types of BC.
Please don't feel alone with the situation - there will always be someone here to offer support. You will also be in very good hands with you breast care team - the treatment is well rehearsed & there will be excellent support from Breast Care Nurses & advice on other organisations to help you through. Keep posting if this helps & take as much time as you can for yourself, doing whatever feels right to help you with recovery, relaxation & diversion. I wish you all the best for next week - it will soon be behind you.
Wx
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Hi again Cazjen, forgot to say yesterday if you have not yet been given an info pack by the hospital pointing you to the Breast Cancer Care charity, you might want to have a look at their website. They have a forum where you can talk to other women who are going through BC treatment or have had it in the past https://www.breastcancercare.org.uk.
It can be a very steep learning curve but if & when you feel you can face it, I would research as much as you can so that you know the right questions to ask & feel a little more in control. This may be too daunting right now while your head is swimming, but rest assured that your breast care team are the experts & as such will know best what is appropriate for your type & stage of BC.
As you are naturally concerned about how you will fare without HRT in the future, you might also want to have a look at the relatively new book by American Oncologist Dr Avrum Bluming (& Carol Tavris) called Oestrogen Matters, which deals comprehensively with the controversy over HRT's benefits & risks, looks at some of the many studies involved & addresses the question of its use after breast cancer.
No-one can say for sure what causes this to develop in any of us & your use of HRT following BSO was the sensible course of action, especially given your young age.
Will be thinking of you next week.
Wx
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Wishing you well Cazjen and just to reiterate what the others have said I think you need a menopause specialist, who can give you the best advice. Also to say my friend has breast cancer and she has never taken hrt, so again as the others have said causes are complex x
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Cazjen. What a shock you have had and add into the mix coming off HRT my heart goes out to you. I can't offer advice but do wish you all the best for next week. We will be thinking of you. Keep us posted when you feel able
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Hi again Cazjen, forgot to say yesterday if you have not yet been given an info pack by the hospital pointing you to the Breast Cancer Care charity, you might want to have a look at their website. They have a forum where you can talk to other women who are going through BC treatment or have had it in the past https://www.breastcancercare.org.uk.
It can be a very steep learning curve but if & when you feel you can face it, I would research as much as you can so that you know the right questions to ask & feel a little more in control. This may be too daunting right now while your head is swimming, but rest assured that your breast care team are the experts & as such will know best what is appropriate for your type & stage of BC.
As you are naturally concerned about how you will fare without HRT in the future, you might also want to have a look at the relatively new book by American Oncologist Dr Avrum Bluming (& Carol Tavris) called Oestrogen Matters, which deals comprehensively with the controversy over HRT's benefits & risks, looks at some of the many studies involved & addresses the question of its use after breast cancer.
No-one can say for sure what causes this to develop in any of us & your use of HRT following BSO was the sensible course of action, especially given your young age.
Will be thinking of you next week.
Wx
I was wondering whether to recommend the same book.
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Hello Cazjen.
So sorry to read that you've had this diagnosis. My neighbour was in a similar position to you and she is fit and well ten years on. She also took Tamoxifen without any problems.
The lovely ladies on this forum are here to support you and I hope you take some comfort from that.
Take care and sending hugs.
K.
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Cazjen. I'm sorry you are having to go through this. I see you have some ladies replied with helpful experience re the HRT. And I hope you find it a little comforting to hear of success in treatment too. . I just wanted to say I send much love your way and please keep posting. We are all here to help support you.
Also please keep checking the thread as I'm sure as PANTS said that you may have even more replies after the bank holiday.
Xxxxxx
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Cazjen sending you lots of hugs 🤗
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Stay strong Cazjen!!! I think that you can find a safe replacement after your treatment. Tibolone is considered safer and the quality of your life is absolutely your choice! 😘🌷
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So sorry to read this cazjen ☹️☹️. Please take care of yourself and focus on getting well. One of the antidepressants, I think it's venlafaxine (?) is recommended for ladies who need to take Tamoxifen, as it's supposed to help with flushing.
Take care xx
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This is devastating news Cazjen, we are all here for you, at the tip of your fingers when you need us.
You are not alone!
xoxo
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Sorry that you have had this news. I had similar diagnosis in the 1990s. My Oncologist told me 'no HRT for you' but I really don't think that there is enough knowledge about who much HRT actually stimulates breast disease. I truly believe that if HRT was so dangerous then double mastectomy would be suggested, so that over-all, one can continue with HRT to relieve symptoms.
I had lumpectomy followed by a bone scan (over all body X-ray), 4 weeks radiation treatment - still here >wave<. I remember well the feeling os shock but once I got on with treatment I felt like I was doing something positive. My Surgeon told me that he didn't expect me to have any further pboelms in either breast, lymph glands were clean - but should I re-consider in future, he would of course do mastectomy. It never crossed my mind once I got going.
....... and breath. Make notes to take to your next appt. My Surgeon asked ro a list of worries every morning but he was so thorough that I never needed them!
tamoxifen made me feel very ill. It's an oestrogen suppressant but I wasn't warned that I would have 'flu like symptoms - after 4 months I had to stop taking it. I hadn't felt ill through the diagnosis and treatment so didn't want to spend the rest of my life feeling ill, when it was a 'this might stop the cancer returning' attitude. There are other drugs on the market but are they really necessary :-\. They come with their own problems. I don't know how much research is done as to whether they are necessary, if they actually stop oestrogen aggravating a potential disease or .......... as for the Consultant staying 'stop immeidatlye', it may be that's all the Medical Profession ever say without really knowing how much influence HRT has over-all.
Good Luck! I suggest that you look for nighties that can be done up at the front as pulling anything over your head will be difficult. Those muscles get tight after surgery and it's quicker and easier to whip open some ties when the Dr comes round to examine or if the Nurse needs to look at any dressings ;-). I had a running stitch above the nipple with a plastic bead at each end ::). I asked 4 gold plated the next time ;-).
:foryou: this too will pass. Take that list. Find those nighties which tie up down the front ;-) ..... let us know how you get on.
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I would say continue with the 'vagifem' as it's not likely to influence breast disease. Otherwise I wouldn't have been given it ;-)!
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I'm so sorry you're having to go through this cazjen my heart goes out to you. We'll be here whenever you need us so don't hesitate to post.
Sending hugs and love
Robin
X
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Hi Cazjen
forgot to say that some of the SSRIs that might otherwise be tried to reduce vasomotor symptoms reduce the effectiveness of Tamoxifen, but your GP should be aware of this & can help you decide what, if anything, you want to try as an alternative to HRT.
Wx
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So sorry Cazjen, keep posting, we're all here for you,
Stay strong, we're all staying strong for you too.
Sending :bighug: to you.....
Jd xx
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Have only just seen your post as have been away from the forum but just to say how sorry I am about your breast cancer diagnosis and wishing you all the very best with your treatement and ongoing care and recovery. I have done several posts about the alternatives and printed out sections of the relevant papers (that are not free) which I have downloaded. Will try to look them up when I can but sorry I haven't got time at the moment.
Please take care of yourself and hope your op goes well...
:bighug:
Hurdity x
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So sorry to hear of your diagnosis , a frightening and confusing time. Try and get Avrum Bloomings book , he pioneered lumpectomy- and was condemned for many years by his peers for his views.Eventually he was proved to be correct.
Both his wife and daughter had breast cancer and he has both of them on Premarin ( he let them make their own decision on this) and explains why , good to have another opinion to throw into the discussion.
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:thankyou:
How are U Cazjen ?
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Hi Cazjen, Sending you lots of positive vibes at this very trying time. Good luck with your treatments I'll be thinking of you. I also have read Avrum Bloomings book regarding the role of oestrogen in breast cancer. He makes a very compelling case for the benefits of oestrogen even if you have breast cancer. It would be great if every medical professional read it and the discussion became more open. There is so much negative information about the role of oestogen in breast cancer it would be great to have clear picture.
Good luck
xx
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Thanks to ALL who have taken the time to respond to me. Very much appreciated. My surgery is tomorrow. I've not had time to wallow in my diagnosis and kept myself busy and of course I have read ALL of your lovely replies and well wishes. I've had Avrul Bluming's book a while and will address the issue of staying on very low dose HRT v Tamoxifen post surgery. I've already started to wean off since last Tuesday and already noticed a difference :'(
My menopause specialist has yet to respond to my further questions given its been a long bank holiday weekend, I shall now wait until after surgery to chase her up. I refuse to be "thrown under a bus re hormones" and will not go back to the dark place I was in last year. I have ordered a Ladycare magnet and menopause aromatherapy cream but nothing can beat a dab of oestrogen! I want this nasty lump out and then get the pathology results. Up until then, I will continue to wean and use a dab here and there. One lump in 17 years of using HRT.
If my diagnosis wasn't bad enough, my husband had a seizure yesterday..completely out of the blue. We had just had a drive out in his pride and joy sports car and had, luckily, stopped for a coffee and nice cafe. 10 mins inside cafe and boom he collapsed. Came round quickly but cafe owner was first aid trained and called an ambulance. We spent 6 hours at the hospital getting him checked over and then discharged for GP to sort and refer to neurology. Life is certainly giving us a kicking at the moment but...onwards and upwards.
Again, thank you ALL for being so kind and supportive. Much love back at you all and I'll keep you posted once I'm through tomorrow xxx
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Will be thinking of you cazjen44 and sending you positive vibes :bighug:
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Bugga ...... never rains does it!
Hope all goes as well as can be expected. Take that list. Ask, ask, ask .......... maybe suggest a copy of that book for the Team to read ;-)
:foryou:
Did your DH not eat correctly, does he have a nerve in the back of his neck which may have caused the black out? Was it a seizure ........
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Sending positive vibes 😘😘 xxx Mooney
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Cazjen, thinking of you and sending you big hugs. xx
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Cazjen. Thinking of you.and sending love. :foryou:
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Thanks to ALL who have taken the time to respond to me. Very much appreciated. My surgery is tomorrow. I've not had time to wallow in my diagnosis and kept myself busy and of course I have read ALL of your lovely replies and well wishes. I've had Avrul Bluming's book a while and will address the issue of staying on very low dose HRT v Tamoxifen post surgery. I've already started to wean off since last Tuesday and already noticed a difference :'(
My menopause specialist has yet to respond to my further questions given its been a long bank holiday weekend, I shall now wait until after surgery to chase her up. I refuse to be "thrown under a bus re hormones" and will not go back to the dark place I was in last year. I have ordered a Ladycare magnet and menopause aromatherapy cream but nothing can beat a dab of oestrogen! I want this nasty lump out and then get the pathology results. Up until then, I will continue to wean and use a dab here and there. One lump in 17 years of using HRT.
If my diagnosis wasn't bad enough, my husband had a seizure yesterday..completely out of the blue. We had just had a drive out in his pride and joy sports car and had, luckily, stopped for a coffee and nice cafe. 10 mins inside cafe and boom he collapsed. Came round quickly but cafe owner was first aid trained and called an ambulance. We spent 6 hours at the hospital getting him checked over and then discharged for GP to sort and refer to neurology. Life is certainly giving us a kicking at the moment but...onwards and upwards.
Again, thank you ALL for being so kind and supportive. Much love back at you all and I'll keep you posted once I'm through tomorrow xxx
Really sorry to hear about the seizure too. I had epilepsy as a teenager (before surgery) so know what it is like to have something like that. Fingers crossed that it was a one off and nothing serious.
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Cazjen44. Will be thinking of you and there is HRT after BC so don't give up on it. I am no expert but maybe the suggestion of Tibolone is worth looking at as it has the testosterone element that you had before. I also would recommend Oestrogen Matters book. Best of luck.
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Hi Cazjen,
I'm so sorry that you're having such a truly dreadful time of it. I hope that you can find some comfort in all the support here.
Xxx
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Hi Cazjen,
Sorry to hear your horrible news.
Hope all went well today. My friend went through exactly the same as you, diagnosed just before Christmas, lumpectomy, radiotherapy for 4 weeks & now back at work.
Also never been on HRT, so that was not the cause.
Be good to yourself and accept any help and support from those around you.❤️💕
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..... and breath. Hopefully you won't be too sore after! :foryou:
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Good Luck Cazjen - I hope it all goes well ❤️❤️
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Hi Cazjen
So sorry to hear about the awful things you are going through at the moment. Sorry to be so late (I haven't been here for a few days), but wishing you all the best with everything, and I hope the surgery went well and you are recovering well. Also sending best wishes to your husband, and that he gets back to full health too.
We are all here to support you, and we are all hoping to hear from you soon :hug:
Take care
Jeepers xx
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Wishing you well x
Peppermintyx