Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: GypsyRoseLee on January 30, 2020, 04:03:52 PM
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My first mammogram picked up something. It's a level 2 invasive ductal cancer. And yes, it is oestrogen sensitive. I have to stop my HRT immediately. I have a lumpectomy in 2 weeks, followed by radiotherapy for 2 weeks. I will have to take something to inhibit oestrogen, for 5 years.
I am devastated. I don't know what to do. I can't go back to how I felt before. Have I brought this on myself using such high levels of oestrogen?
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Probably not. Despite thoughts that some breast disease can be oestrogen triggered, you have found quality of life after a long haul. Keep that thought in mind that you had a fight to get stable!!
I underwent the procedure that you are facing - there will probably be a gap between the surgery and the start of radiation to allow wound to heal and to give the body a break; the lump should be taken to histology even though it's seen on mammogram. Is there an option for mastectomy, so that you could continue with HRT? Was this discussed? I had a small area of 'sunburn' over the radiation site which was treated with steroid cream.
If you feel that is a option do ask to see the Surgeon again. We are told so often that we shouldn't use HRT if there is breast disease but I can't understand why we aren't offered bitateral mastectomy if HRT can be prescribed after. HRT can be a Life saver after all.
Do find out what you will be taking as an oestrogen inhibitor. tamoxifen almost killed me as I became sensitive to smells, taste, had cold flushes ::) and as I hadn't felt ill during diagnosis and treatment, decided not to continue with it. Still here >wave<. There are other medications now I believe worth visiting a Pharmacist perhaps to discuss?
Let us know how you get on. Also, once the surgery and treatment is over, it might be worth you writing to the manufacturer of the product or getting the Surgeon to do so. I believe that without communication treatments won't evolve.
:bighug:
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Hi GypsyRoseLee
I am so so very sorry to hear about this and there is nothing I can say except I will be thinking of you over the next few weeks as you start your treatment.
The causal connection between oestrogen and breast cancer is I expect you know, controversial and not established although it is known that should a cancer arise, if it is oestrogen fed then it will probably grow quicker if you are taking extra oestrogen than if you were not, so please do not blame yourself. We all are aware of the potential risks and have to weigh up the risks and benefits vs quality of life and from what you've said in the past you were desperate for some relief from hormonal fluctuations and depression when oestrogen dropped.
Please take good care of yourself and if you are able to transfer to one of the prescribed anti-depressants to help and especially while you withdraw from the HRT - there are a couple that are particualrly recommended - I think they are Venlafaxene and maybe Fluoxetine - but I can look this up if you like - I posted I think on here?
:bighug: from me too
Hurdity xx
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GRL
Im sending you a great big hug(I don't how to do those emojis) but its very heartfelt. Its always in the back of my mind and Ive read and read and read so much on hrt and risks and breast cancer is also in my family and it is a balancing act. You have not brought anything on yourself. My decision was to go on it as I had no quality of life and probably wouldnt have survived not going on it. As Hurdity said anti depressants may help the withdrawal and be the way forward They have been my lifeline in the past. Listen the way my hrt has pooped out on me recently I will be joining you on anti depressants.
All the very very very best wishes xxx
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Hi GypsyRoseLee,
Sending you a huge hug :hug:
Now you have to focus on your treatment and overall health, no use worrying about the past.
Thinking of you, keeps us posted.
BeaR.
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Really sorry to hear that GRL . There's loads they can do now for breast cancer. Like the others said talk to your consultant and see what your options are. Wishing you well xx
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Sorry, that's rubbish news GRL and most certainly don't go down the road of "was it my fault etc". As Hurdity says (and Louise Newsom I think and a cancer doctor who I can't remember his name but he did a podcast with Newsom???) there has been no proven link but somehow with all the old studies floating around and GP's spouting "oooh hrt, don't do that" we think it's something we've "done". Anyway, I think people who are really sick with their meno symptoms that are off the scale have hardly any quality of life and so you treat the meno symptoms any way you can, because there is no other alternative. The mental impact of not treating them is probably more life threatening than the "risk". You just do what you have to live day to day regardless of anything else, its all about balancing risk.
You are suffering from such shock news, it's easy to think "what if" but try not to :bighug:
Your treatment is soon but not soon enough I'm sure and it's scary, but talk to anyone who will listen about returning meno issues and what might be done. Get as much info as you can because by the sounds of your post fear of how to deal with that because you were so bad before, is likely to be just as bad as worrying about the diagnosis and treatment itself.
Thinking of you xx
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My first mammogram picked up something. It's a level 2 invasive ductal cancer. And yes, it is oestrogen sensitive. I have to stop my HRT immediately. I have a lumpectomy in 2 weeks, followed by radiotherapy for 2 weeks. I will have to take something to inhibit oestrogen, for 5 years.
I am devastated. I don't know what to do. I can't go back to how I felt before. Have I brought this on myself using such high levels of oestrogen?
really sorry to hear this. I had a scare from my 1st mammogram and was called back. Fortunately it was a false alarm. Were you on local oestrogen for VA? Are they saying that you have to stop that too?
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Thank you for being so lovely. I'm trying to keep calm and stay logical. I am more scared of the awful depression and anxiety coming back, than I am of the cancer diagnosis. But that might be because I know the prognosis is good.
I don't know how I will feel stopping HRT. I have always taken 100mg of sertraline alongside it. And I started them at the same time, so have never known which helped the most? I am praying very hard that the Sertraline will be a cushion. Plus, I am 50 this year so four years older than when I started HRT, so maybe I'm over the worst of the mood issues? All the other women in my family were post menopause by 46 anyway.
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You should checkout the Alternatives section on here GRL. I'm sure you will find lots of useful information there.
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So sorry to hear of your diagnosis which could have happened with or without hrt.
I hope treatment goes well and is successful.
I wanted to give you a positive story about stopping hrt. I had an horrific peri and ended up in and out of hospital having tests for everthing. As a result of inept doctors not listening to me and me not listening to my instincts and to the doctors instead i nearly died. I ended up on a cocktail of ads and benzos and had it not been for the internet i would be dead by now from suicide or drug side effects. All the drugs they gave me made me so sick. Anyway i started on hrt and life improved. I was on it 4 years and was petrified of coming off it but about 8 months ago i weaned off over a 3 month period. I have been off 5 months.
Now i have had my bad periods but overall i feel dramtically better off hrt and the intensity of the peri symptoms has subsided a lot.
I am still having periods so still peri.
I came off the hrt as it was affecting my vision and giving me regular migraines with aura, sometimes weekly. I also had terrible depression and anxiety but obviously ads were out of the question so i thought i would eliminate the hrt and not a migraine since and huge improvement in how i feel. I also got diagnosed with melanoma on hrt and didnt want to add any risk factors but i was fortunate they got it early.
I didnt think i would survive without hrt but i am thriving and getting my life back. I hope things go well for you too.
Peace and soladarity xxx
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That is really encouraging to read, thank you for sharing. I've been reading back in my diary and can see that I had been on Prof Studd's 3 pumps + Utro + Testogel for 3 months with no real improvement. That's why I started on Sertraline, and there was a definite improvement almost straight away, I went very Zen for a few weeks. It was still up and down though, so I increased the Sertraline AND increased to 4 pumps.
So, I'm really hoping it was sertraline that helped me more than HRT? I never really had any of the physical symptoms of peri, it was always the anxiety and depression that floored me.
You were so brave to wean yourself off HRT. What made you decide to do it?
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*Alua* so didn't HRT help with your depression and anxiety?
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Hi GRL, so very sorry to hear this, but please don't even think about blaming yourself. We all have to make the decision whether or not to treat our life-wrecking menopause symptoms with a medication about which the state of knowledge is still very much incomplete. You took what felt like the right decision at the time & none of us can do more than that. Seems to me that was not only the sensible but the responsible thing to do, as when we are under par with debilitating symptoms for an indeterminate length of time this can also have a seriously negative effect on others who share our lives.
The jury is still out on the link between HRT & development of breast cancer (sadly in my FH) & my understanding, after a great deal of reading that's continually ongoing, is that it has not been proven to be causative.
You are right to be optimistic about your prognosis - treatments are very effective these days. Your breast surgeon should be able to advise which ADs are safe to take with hormone blockers, so please talk to him/her about this as soon as you can to put your mind at rest.
Will also send you a PM later - I hope that's OK. :bighug:
Wx
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I too am scared at times that the depression and anxiety will floor me in future and I don't know if I have the strength to go through that
again :-\. 4 me it is so physical and gets into my head somehow with negative 'this will never improve' thoughts.
Will you wean off GRL? Maybe have a chat with the anesthetist ? Most Surgeons work with a team so you should be able to contact his 'gas man' ;-) for a chat prior to admission. I found it very helpful to speak with the anaesthetists prior to surgery . It gave her time to make a plan specifically for me.
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Hello GypsyRoseLee
So sorry to read about your diagnosis. I also remember your previous posts about your meno journey and subsequent HRT treatment. Many ladies were rooting for you then and we are here to support you now .
Wishing you well and sending lots of hugs.
Take care and keep posting
K.
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I don't know if weaning off makes any difference? My surgery is on Feb. 18th so not long. I never really suffered with any of the physical symptoms of peri, so really unsure what to expect?
How long ago was your diagnosis CLKD?
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Wow what a blow - sorry you're facing this.
Guess it's time to sign yourself over to the breast team and follow their instructions and protocol for the time being.
Maybe start a journal to monitor how you're feeling as you come off the HRT.
I think I've read on here about a Consultant who prescribes HRT for women post Breast Cancer treatment.
Keep posting to let us know how you're doing - one day at a time :foryou:
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199?5 I think.
My Consultant insisted that I had a list of questions at each visit but he was so good at explaining and supporting that I never required it. Make sure that you ask about any worries that you might have. Who is supporting you at home?
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Oh GypsyRoseLee, I'm so sorry to hear this and I'm thinking of you.
You haven't done anything to bring this on yourself; you were trying to get well, but it's just a cruel lottery.
Sending enormous hugs and stay in touch.
X
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Gypsyrose
I'm so sorry this has happened to you. I wish you luck with your surgery, treatment and recovery. Sending positive thoughts and love xxx
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I too wish you luck with your surgery, and your follow up treatment :-* . Sending you love & best wishes xxx
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Hi rosebush - what's it meant to be :D
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Hi GypsyRoseLee
So sorry to hear of your diagnosis
Just wanted to add my good wishes for what must be a very difficult time, I hope the surgery all goes well
Hugs
Jeepers xx
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I am so touched by all your kind words and support. Thank you. My main fear isn't the surgery or radiotherapy. It's the fear that if I take Tamoxifen, its oestrogen suppression will send me into a black hole again. I've tried to do some research but can't find anything useful.
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It is a 2 supress the hormone. 4 me I had over-sensitive taste and smell. DH had cooked a Dundee cake: It was in a tin with the lid on in a cupboard with the door shut. I could taste the tablespoonful of water he had used in the mix every time I walked by the cupboard. He bought some pork chops and even though I wasn't in the kitchen I could taste them whilst he was cooking ....... I couldn't smell them or see him ......
It put me off my grub within 24 hours. As a recovering anorexic I couldn't afford to continue with the drug. Also, do check what effects these drugs can have on other parts of the body. Ask if it's really necessary to take any? I am still here: without. My friend took tamoxifen for 5 years, then a break of 2 then 3 more years: she isn't.
I don't know how much research has actually been published on Tamoxifen and others ....... you have time to ask and research, you are unlikely to be given it until after surgery. Within 12 hours of swallowing the first pill I had cold flushes I thought I had a 'flu bug ::) - it was like cold water running from my neck down my back. That stopped when I stopped the drug.
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I have read through all of your posts today GRL (stuck in bed with white-knuckle anxiety). I identify with so much that you have gone through. My life has effectively been ruined due to hormones. I have been misdiagnosed with everything under the sun (bipolar, chronic fatigue, IBS, depression etc) but it has dawned on me that all of my problems have been due to bloody hormones.
I hope that you don't mind me saying, and I could of course be wrong, but I do not think that you needed the oestrogen (that your oestrogen was high enough) and it was the antidepressant that brought you relief (not the Studd protocol).
The reason I am telling you this is that I feel that without oestrogen you may not suffer as dreadfully as you are anticipating and that the sertraline might keep you on a semi-even keel.
I feel so dreadfully sorry for you. I regularly feel the anxiety (scratch my skin off variety) that you experience and I have always had the sudden and dramatic changes that you mentioned (I always called them my switches). I have so many similarities to you and, after decades online and on forums for all manner of conditions, you are the first person that I can truly identify with.
I so hope you are surviving this ordeal. No one should suffer as much as you have.
Rollercoaster X
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rollercoaster - it took years for GRL to get any relief. So having to alter a regime which works can be a real worry.
As an apparently new Member :-\
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Hello CLKD. Nice to meet you. Glad that I have been made to feel welcome with your 'apparently a new member' nicety.
::)
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Hi rolercoasterhell. :welcomemm: I'm sure no offence was meant. I checked to see whether you'd introduced yourself with your own thread, which is usually suggested for new members & I see Hurdity has already helpfully replied to your initial post there. Maybe have a good look around the forum if you haven't yet? There is a long running thread where members post on anxiety, so you will not be short of support if you'd like to introduce yourself there. I hope you find any help you need, there is always someone around to chat, compare notes & hold a hand.
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Thank you Wrensong. How kind of you to post.
I didn't mean to upset Gypsy-quite the opposite actually. I was trying to say that perhaps she won't be too ill without oestrogen because the antidepressant will keep her afloat.
Whatever the outcome I wish Gypsy well. I feel dreadfully sorry for her. Life really isn't fair.
X
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Of course you didn't mean anything upsetting rolercoaster, we can see that from the sympathetic wording of your original post. I got the impression you were offering reassurance in what is a terribly difficult situation for GRL. I think we all feel very protective when a member suffers such dreadful misfortune & I think CLKD was simply trying to explain that there was a long history behind the situation. I don't think anyone meant any offence.
It's devastating when any of us is diagnosed with BC, but treatments are well rehearsed & very effective these days, so there is every reason to be optimistic of a full recovery. Unfortunately 1 in 8 women will develop BC at some point in their lives & in my experience breast surgeons are some of the most open-minded medics regarding causation, as the condition is complex & varied & the state of knowledge still incomplete.
It's clear from this thread that we all share your good wishes for GRL. I was also sorry to hear of your own struggles & hope you find useful info, wisdom & support on the forum, as menopause can be such a difficult time for so many of us.
Keep posting.
Wx