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[hereandthere]

I’ve been diagnosed with atypical Ductal hyperplasia (ADH) following a vacuum assisted biopsy;  luckily not DCIS or IDC, but as this is highly correlated with estrogen receptor type cancer, besides being referred to a surgeon next Friday (and gynae says the surgeon will probably do a surgical excision, which I can see from my research is standard for this to check there really isn’t cancer surrounding the original biopsy area), the gynae has told me to immediately stop my HRT. (After surgeon’s assessment alternatives will be considered- vagifem should be allowed).
But due to wanting to stop feeding the hyperplasia (which my gynae says is likely happening from one of my hormones I’ve been on over the years having triggered it), she wants me to go cold turkey and I just feel like I really can’t do it. 😢 I’m lying here not sleeping, looking at my pills though I’m so tired.
I just did it recently for two weeks due to getting carpal tunnel and the effect on my body was immense, especially going back on, though I suppose that’s not going to happen now.
Gynae did say there will be withdrawal symptoms and that this is normal, but I’ve read up about not just stopping abruptly even in tumour situations, and mainly I just remember how I suffered last time.
Plus I got a recent promotion and am working so hard.
I need to sleep and work and navigate this potential cancer thing with equanimity!!
So I’m thinking of tapering against her advice.
Has anyone been in my situation with the atypical Ductal Hyperplasia, or even getting cancer how you went off the HRT?
I realize I need to get off the HRT, but just don’t want to do it so abruptly again.

[CLKD]

I wouldn't stop any drug cold turkey.  Any1 who suggests this has never been involved with the trauma this can cause.  The body/brain become used to regular input .........

At my age, late 60s, I would wait to see the Surgeon quite frankly.  In the mean time mayB keep a mood/food/symptom diary as well as making notes about how awful you felt when you stopped recently.  To take to the appt.

My question would be : "If HRT is so dangerous and I find my regime helps, why aren't you offering bilateral mastectomy ? "  There are Surgeons who do prescribe HRT for patients with various breast conditions.  It's about Quality of Life.

When I left my final appt in the 1990s my Oncologist said "No HRT for you my Girl".  Well had I suffered as others do I would have pushed hard for it.  Let us know how you get on and what advice is suggested.

My surgeon insisted that my lump be removed, it was sent to histology and found to have 'changes at the outer margins'. 

[Aprilflower]

Hello Hereandthere,

So sorry that you are under so much stress at the moment. 

From what I know this condition is generally a 'pre-cancerous' condition' so the surgery that's proposed seems about right.  As for going cold turkey I would think that a few days wait, until you see the surgeon, would not be that dangerous.  The thing is to remain as calm and positive as possible, as the stress will definitely make any meno symptoms worse, when you do come off. 

It's very encouraging that you are getting this sorted out now though, so hang on to the positives.

Wishing you all the best
Aprilflower

https://www.cancervic.org.au/preventing-cancer/attend-screening/breasts-health/atypical-ductal-hyperplasia

P.S Found this link from an Austrailian site which doesn't seem to exclude taking HRT

[vickypk]

Hi HereandThere
Sorry to hear what you are going through.
I had three lumpectomies two for ADH and one for DCIS. I had them around the age of 40, it was strange the lumps were coming back in the same place, about six months after each removal. That was over twenty years ago now.
I am on HRT, a patch, I know it is worrying. I've been using the patches for about five years. Like you I don't know how I would get on without HRT.  Thinking of you
Hope all is ok
xx

[hereandthere]

Thanks CLKD, Aprilflower and vickypk
I decided last night after writing to cut my pill in half so I have just had the second half now, rather than going cold turkey. I will see how I go. I know that you understand the difficulty and I so appreciate your thoughts. It makes me feel less alone.
Statistically the chances of getting cancer are said to increase fivefold with ADH.  Vickypk you are obviously taking a risk but I’m not judging you for it. Who is to say what choice makes for the best quality of life and I don’t know yet what I can handle.
I am surprised that your doctor is fine with your HRT after DCIS, as my understanding is that it is a stage 0 cancer? Or is it a battle to get a prescription?  On the other hand you’ve obviously monitored and have acted quickly.
CLKD I have to laugh at your mastectomy question for my doctor. Can just imagine the face!
It’s actually been interesting to read that it’s considered over treatment even for DCIS to have a cautionary mastectomy since although recurrence rates are then lowest, survival rate is statistically no better than the woman who has breast sparing surgery. If you add radiotherapy, recurrence rates are similar to mastectomy.
There’s a US tool called the Gail model and you can answer the questions online. It’s not an exact science and I had to answer I don’t know as to whether I have a genetic mutation, but according to that result my risk is 2.6% versus average of 1.3% (same age and ethnicity in the US) of  getting cancer in the next 5 years and 20.9% versus average of 11% over my lifetime. It didn’t have a dense tissue question and mine is dense, which increases my risk too.
Still it’s less likely I won’t get cancer.
If on the surgical biopsy they only find ADH again, even on the margins, that’s the end of surgery as ADH is ‘high risk’ not cancer.
One concern I do have is that multiple biopsies can create scar tissue where there are a number of clusters to excise and women sometimes opt then to go further. But from my mammogram I think there’s only really the one cluster of suspicious microcalcifications, so am hopeful.
I have really small breasts so no vanity there, but I still don’t want to lose them.  I mean yes of course if to save my life but right now I feel I’d rather have breasts and no HRT than the opposite. Easy to say right now of course while I’m still sleeping.
There’s also a possibility I think of taking hormone blockers on ADH, but that I really don’t see happening- going from like a miserable 20 to zero estrogen level!! If I can’t sleep without HRT then how on earth do people cope with hormone blockers?  I believe they aren’t incredibly popular but one good thing is apparently there is bone protection in them whereas having nothing raises the osteoporosis spectre - my aunt had it. We women are saints. 
Aprilflower you are right about the stress. I’m naturally anxious even without worrying about cancer. Today I did some family time to open gardens and a beer and burger in our winter sun afterwards. Sod not drinking.
It did make me feel calmer.
I’ll check back here after the biopsy. Thanks again. Xx

[CLKD]

Ask the question, not enough surgeons consider how their insistence on no HRT impacts! 

I would avoid implants too as they can hide any changes which cannot be seen mammogram.  Are U offered ultra sound rather than mammo.? 

Those statistics are that: possibilities not actualities.  Unless more women press for HRT to relieve symptoms there will never be a clear actuality.

Also, that bus might be along B4 we develop cancer due to HRT.  I was prescribed 'tamoxifen' which might have prevented further growths, it almost killed me.  A friend died whilst taking it due to womb cancer.  All medications have risks.

[hereandthere]

I will ask the question.
Unfortunately (as we couldn’t look at how the ADH has developed) my mammo was my first, and that meant the radiologist offered a free ultrasound with it. The ultrasound was good at looking at the cyst I had in my other breast, but can’t even pick up most of the microcalcification due to small size; for that you need the mammogram. MRI (expensive) can also pick it up.
The preference for post menopausal women without bones at risk (I would have thought this is all women) appears to be aromatase inhibitors rather than tamoxifen or raloxifene.  Both routes sound horrible. Tamoxifen binds to the hormone receptors to block activation of the cancer cells, whereas the inhibitors prevent any oestradiol from being produced in the first place (post menopausally).

[CLKD]

I have no idea how my lump formed: I always wash in the same way, one night it wasn't there, the next it was. 

  4 the info., glad that I'm not taking it down in shorthand 

[vickypk]

Hi HereandThere
Hope all goes well for you.
I know I am taking a risk with HRT.  I had so many symptoms with the menopause I couldn't even leave the house for months until I took HRT.  Even though I had all these breast problems 20 years ago I am still at higher risk of cancer and I do worry about it all the time  Also my mum had breast cancer.
After reading what you are going through I know I shouldn't really be on HRT
Hope things go well for you.
Vicky xx

[CLKD]

This is about quality of Life?  How often do you get checked vicky?

[hereandthere]

 I found this comment supportive of my decision from an American gynaecologist, graduated from Stanford, Dr Michael Goodman, in 2015-
“If weaning off because of a diagnosis of estrogen/progesterone receptor-positive breast cancer, I compact this taper-down to a 6-8 week period (there really is no reason to say “OhMyGod, OhMyGod, I need to stop Immediately!), starting them on supplements and other non-hormonal menopausal symptom treatments at the same time, so as to cushion this difficult transition.”

[CLKD]

Yep.  'we' go into panic mode about the possibilities ............

[vickypk]

Hi CLKD
I used to have breast screening once a year but haven't done that for a few years now. I remember my surgeon saying the lumps are estrogen receptive. I know i shouldn't ignore this even though it was 20 years ago
Thanks for your reply.
I haven't been in the site for a while and it's nice to see familiar people still around here.
Vicky xx

[CLKD]

20 years is a long while in terms of what is 'in' or 'out' in all streams of medical care 

[hereandthere]

Just an update.
 I saw my surgeon who aspirated my cyst in the right breast while I was still in his rooms. I told him it felt bigger and he ultra sounded again and it had grown from 3.3 to 3.5 mm in a couple of weeks since the radiology.  He said ok we need to do this, it can be in my rooms and although a surprise I was happy to not have had to prepare for days and we just went ahead. So now after just having the bandage off the left boob from the biopsy, I now have one on the right. Less sore afterwards though.
Fortunately it came back clear. He said a non-bilateral complex cyst (large and some unevenness) is more suspicious. If it fills up again he recommends to surgically remove the cyst.
My microcalcification in the other breast (the ADH) is to be cut out shortly. It’s elective, but I elected to do so to a) check nothing around the biopsy site and b) stop it developing. Provided it’s still only ADH that’s surgically complete. 
If I opted to instead watch and wait and there is any development at all, the surgeon said it could only mean at least DCIS and then I’d be required to have radiation after the surgery.
Surgery is an absolute no brainer for me in this scenario. Although a bit anxious about my tiny boobs becoming tinier.
I also thought of vickypk, as I don’t think you mentioned having radiation.
I’m doing the Fish River Hike in Namibia mid August so I did please can we do the surgery quickly and he said I should be fine in 6 weeks, so I’m waiting to hear about next Wednesday.
Hold thumbs for me.
Almost forgot, the surgeon validated my extremely well researched decision not to go cold turkey. As ADH is not cancer he said tapering off it is a more reasonable response.