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Author Topic: New member lobular carcinoma in situ question  (Read 5041 times)

Helenhelena

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New member lobular carcinoma in situ question
« on: February 07, 2017, 01:01:24 PM »

Hi I have been finding this forum so useful for many months so thanks.

I started evorel patches in November aged 51. I decided to cut them in half to start due to advice on this forum.

And they were brilliant. I was sleeping better then I have for many years. The itching was reduced. And I had other unexpected effects like the minor anxiety I had had for many years disappeared. My awful creakiness went. I smelt better (I think). I just felt rejuvenated .

So all great . Then I had a letter re my first mammogram. And to cut a long story short I was after several biopsies found to have precancerous cells called lobular carcinoma in situ in one breast. I have an increased chance of developing breast cancer in the future.

The clinic I went to were great and did say they did not absolutely say to stop HRT but warned it may increase likelihood of getting cancer.

My feeling at present is to stick to the half patches. I just cant cope with 4 hours a sleep a night and with the unbearable itching. I have a further meeting in the clinic in May and to discuss it further then with them. I think I have picked up from here that patches are better than tablets as the estrogen is directly applied

My lifestyle is good -exercise and eat well. not overweight, hardly any alcohol. No history at all of breast cancer in family.

I do have a friend who had breast cancer after her first mammogram that is urging me to stop HRT as she says the discussions she had with her surgeon were extremely anti HRT and the effects of estrogen.

I find it a difficult situation but I just feel so good on HRT that I am reluctant to give it up.

Would appreciate any advise from folk who have been in similar positions :)
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CLKD

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Re: New member lobular carcinoma in situ question
« Reply #1 on: February 07, 2017, 01:48:30 PM »

 :welcomemm:  sorry about your news. Have you required any treatment?  Quality of Life is important and I don't think that any risks about how HRT is delivered and the added risks have been thoroughly investigated. 

You could send an e-mail to Dr Currie on here perhaps, details should be 'above'.
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cubagirl

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Re: New member lobular carcinoma in situ question
« Reply #2 on: February 07, 2017, 03:36:20 PM »

I personally would wait to speak to someone in the know about such things.  Like you I would be reluctant to go back to only a few hours sleep per night.  However, specialist may be able to help with that aspect.  I was always told that HRT was much safer transdermally. Of course nothing can be 100% safe.  My GP agrees with me that quality of life is very important.  Yours has been caught early.
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coldethyl

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Re: New member lobular carcinoma in situ question
« Reply #3 on: February 07, 2017, 08:58:45 PM »

I can't really comment on HRT or breast cancer per se but I am currently receiving treatment for ovarian cancer and I'd say that while you are fit and healthy , it's easy to think quality of life is all that matters . You soon find you think very differently when faced with the possibility of it being cut short prematurely and your quality of life on chemo is pretty diminished. I can't help but think that given the chance to avoid cancer occurring, that I would take it - some aren't so easy to avoid or detect but you have had an early warning that your body is capable of cancerous changes and have been told you are at risk of a tumour proper starting. I understand your reluctance to give up HRT but I'd be inclined to have a trial and see how you get on off it - your own hormone levels may have settled sufficiently to make what symptoms are left more acceptable to you.
I don't know whether LCIS can be tested for hormone receptors which would give indictation of you needing to avoid hormone treatments - something to ask your team about? Xx
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Helenhelena

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Re: New member lobular carcinoma in situ question
« Reply #4 on: February 07, 2017, 10:44:46 PM »

All brilliant advice thanks

Have required no treatment.

I do totally take on board that I dont want to risk actual cancer if I dont have to.

My instinct was though that good sleep is important to my body and that it might actually balance out with a low rate of HRT so that I am not putting myself more at risk. But will ask at clinic :)
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CLKD

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Re: New member lobular carcinoma in situ question
« Reply #5 on: February 08, 2017, 11:05:23 AM »

Make a list to take with you, adding any suggestions on here? Let us know how you get on??
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Helenhelena

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Re: New member lobular carcinoma in situ question
« Reply #6 on: July 04, 2017, 07:24:56 PM »

Updating that clinic advised that better not to use HRT but not absolutely saying not to. I am still on half doses of Evorel Sequi. Am awaiting further information that a specialist has been asked to provide.

Meanwhile the clinic said to stay on the Evorel for as short a time as possible

So I would like to ask advice on what is best to do next.

I was previously having very bad itching that lessened but didn't absolutely go away on the Evorel. Suddenly it seems to have gone (thank goodness)

So is my body getting more used to the menopause?
When should I think about going onto the non progesterone Evorel  -is there a specific age?
Is there an age where the sleep problems I was having (4 hours a night - tough)would lessen naturally.
With the proviso of staying on HRT for a short time  -what age is it best to try to come off. I am 52 and 5 months.

Thanks for help so far
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CLKD

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Re: New member lobular carcinoma in situ question
« Reply #7 on: July 04, 2017, 10:17:28 PM »

Tnx for the update?  Has anyone suggested mastectomy?
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Taz2

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Hurdity

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Re: New member lobular carcinoma in situ question
« Reply #9 on: July 05, 2017, 07:10:18 AM »

Hi HelenaHelena

 :welcomemm:

Sorry to hear about your lobular carcinoma and I can totally understand your dilemma.

Re the Evorel - if you have a uterus then you will always need to take some kind of progestogen. In the large WHI trial it was the progestogen component of the HRT that led to a greater risk of breast cancer although different type of oestrogen and progestogen were used in the study.

Some studies are showing that using natural (ie the same hormone our body makes) progesterone might associated with fewer breast changes than the synthetic ones so that is an option. However oral progesterone has to be taken in quite large doses to be effective (although can be used vaginally at lower doses).

As coldethyl says you should ask about whether if you were to develop cancer it would be oestrogen positive - in which case it would probably grow faster than if you were not taking HRT.

This is a very specialast area and I know very little about it but sounds like you are under specialist care.

You can reduce your risk of getting breast cancer through lifestyle measures although I don't know whether this is the case if the lobula carcinoma is already there. By these I mean keeping your weight within normal BMI limits and trying to reduce excess if necessary, taking lots of exercise, reducing alcohol to a minimum and eating an extremely healthy and varied diet with lots of fresh unprocessed foods and fruit and veg.

Re how long on HRT - women who reach early menopause are advised to take HRT at least until the natural average age of menopause of 51/52 (to protect heart and bones), but many women experience menopause later than this and so symptoms may not even start past this date. Depending on where you were (what your periods were doing, cycle length etc) before you started HRT - you may still have a few years to go before menopause - or you may have got there. Some women continue to have symptoms for several years even after menopause.

Sorry I can't comment on the sleep issue - for me because HRT stopped sweats and flushes - that enabled a better night's sleep.

I hope you manage to decide what to do for the best - to protect your health as well as quality of life.

Hurdity x
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CLKD

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Re: New member lobular carcinoma in situ question
« Reply #10 on: July 05, 2017, 11:30:23 AM »

I had a 'good' diet (when I was able to eat) so I don't consider that to be a factor in why I developed a lump which at histology was found to have changes at the outer edges.  When I am not anorexic I eat well and usually make healthy choices.

Tnx Taz - Tamoxifen isn't without it's dangers i.e. cancer of the womb
« Last Edit: July 05, 2017, 11:31:54 AM by CLKD »
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TheWorstWitch

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Re: New member lobular carcinoma in situ question
« Reply #11 on: July 05, 2017, 02:08:27 PM »

No advice to add HelenHelena but just wanted to pop by as you kindly posted on my thread.

I really hope you find a solution to all this - it's a proper "rock & hard place" situation for you isn't it.
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Taz2

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Re: New member lobular carcinoma in situ question
« Reply #12 on: July 05, 2017, 06:28:15 PM »

I think that Tamoxifem is not used so much now. Three of my friends who are in remission from breast cancer are on a different drug but I can't remember what it's called!

Taz x
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Salad

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Re: New member lobular carcinoma in situ question
« Reply #13 on: July 05, 2017, 11:16:35 PM »

I think that Tamoxifem is not used so much now. Three of my friends who are in remission from breast cancer are on a different drug but I can't remember what it's called!

Taz x

Is it Letrozole Taz? My mum is taking it and is having some rotten side effects. Her Consultant wants her to continue but I'm starting to think at 85 that enjoying life is so much more important.

Sorry to hear your dilemma Helenhelena, what a difficult decision. Have you been able to discuss your options properly- my first thought was as CLKD wondered and whether you could have a mastectomy and keep using HRT?
Take care xx
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coldethyl

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Re: New member lobular carcinoma in situ question
« Reply #14 on: July 06, 2017, 06:18:45 PM »

Tamoxifen still used in premeno women - they use Letrozole in post meno women- used to be 5 yrs but now 10yrs recommended for those with ER pos breast cancers.
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