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Triple negative and HRT

19 REPLIES 19

Re: Triple negative and HRT

I was in a similar position. My doctor referred to an anti aging doctor who specialized in hormone replacement therapy. Between the two doctors they agreed on a regiment for me to go on where the benefits outweighed the risks. If your doctor thinks its OK then I say go for it.

Re: Triple negative and HRT

Poniette, Do write the questions down.

 

just so you know my status I was diagnoses grade 3 TNBC, tumour 31mm by 21mm with node involvement.  I'm 56 yrs old and like you also have private health insurance and like you oncologist said the treatment will be no different private.

 

in order to act quickly and zap the cancer cells they gave me chemo first (8 rounds EC then Pictalxol) , this would not only attack the tumour plus hunt down any cells that may have escaped, or that was the intention. We will never k ow if more have escaped. That said, I was very lucky to have had what is know as a Complete Medical Response which means the tumour struck to nothing.  This was tracked each two chemo cycles by ultra sound.  This meant I could have a lumpectomy rather than full removal.  They still re over a lump the size of the original tumour which was sent to pathology with the lymph nodes and fatty issue removed from under the arm.  I had four nodes showing signs of cancer but they were hdryolised  which is part of the CMR.  After the surgery I had 20 Rounds of rads as the amount of rads is precribed in accordance to your first appearance I was told.

You ca. Request to see the pathology report and ask about clear margins as these are important indicators as to how well you have managed with chemo.

 

We are all different and our cancers are different so things may be different for you but I thought I would let you know my story.

 

If give the option of chemo although horrid I would take it again as a drop of a hat as it works on the whole body.

 

I also had CT and Bone scans before treatment started to see if the cancer had spread.

 

wishing you well with your journey.

 

Pam s

 

Re: Triple negative and HRT

Thank you for your reply. I was told by consultant I had breast cancer two places one dcis the other invasive. Needed mastectomy and clearance of nodes followed by rads .Then I was told what could go wrong lymphodema etc. I was then sent to see a nurse now my BCN. She showed softies and silicone breast. She looked at the computer screen and said oh you are HER negative I said what does that mean she replied that's good better than positive. I was in shock my husband more so therefore we did not ask a lot of questions. 

I have since had my op then a meeting with BCN who told me HER 2 neg ER neg 35 mm tumour 18 lymph nodes removed 4 showed cancer cells oh you might have to have chemo. Your biopsies are being retested I asked why she replied to ensure you are negative. Surely this should have been checked before she passed this info to me. 

My appointment with the oncologist is 11 August so now I have a long list of questions. I have learnt a lot from this forum this is when I started to think I must be triple negative but have not been told this and am very annoyed no one spent more time with us to explain things.

 

I do have private medical insurance my GP advised me to go down the NHS route I was very happy with my stay in the hospital and the care I even got my own room and bathroom . Why do we pay these expensive premiums I ask myself perhaps I would have got a full explanation if I had gone down the private route.

i will now be asking a lot of questions now I have got over the initial shock.

Re: Triple negative and HRT

Poniette - I was told full status by surgeon when diagnosised as this influenced treatment.  I had chemo first, then  Surgery, then rads.  Saw many different doctors during chemo as they need to check your body is up to the next round so lots of blood tests.  Was prescribed lorazepam to help with anxiousness.  Ask for a PIC line if your really bad with injections.  

 

Wishing you well.

 

Pam x

Re: Triple negative and HRT

Hi Poniente

 

Welcome to the BCC discussion forums, I am sure your fellow forum users will be along soon to help answer your questions.  You will find that they have a wealth of information and experience between them.  To support this, our helpline team are just a free phone call away if you need to talk to someone in confidence, 0808 800 6000 lines open Monday -Friday 9-5 and Saturdays 10-2

 

Take care,

Jo, Moderator

Re: Triple negative and HRT

This is my first post although I have read loads. I am 71 COPD sufferer although always been a none smoker.

i was diagnosed 26 June had mastectomy and lymph clearance 16 July On my notes BCN has written ER - and HER2 negative nothing about PR . She just said they were being retested she never mentioned triple negative. Am I jumping the gun here, 4 lymph nodes out of 18 affected slightly she said. Have to go for CT scan which she said was like being pushed through a polo mint. No mention of injections which I have a phobia of now I have my appointment and this is stated. Can I ask for a sedative I was given one before I went to theatre. It just freaks me out and my breathing goes haywire.

i am not sure about this BCN she has told me one or two things that have changed like you will not meet your consultant this is a nurse led service. I met him before I went to theatre every day I was in hospital for 5 days. He only missed visiting me on the Sunday and a registrar came. Is it just me.Perhaps I am reading too much but if I am TN looks like chemo and radiation are my only options. Not due to see oncologist until 11 August. Anyone else not told and had retesting done

 

Re: Triple negative and HRT

Strange how they all say different things. My surgeon said okay to take but GP says no. Can't get access to do smear as so dry. But I. Not taking it as the risk is still there. So much contridictory info out there.

Pam

Re: Triple negative and HRT

I'm TN, treatment ended December 2013. I recently had an annual checkup with my onc, I complained bitterly about menopause symptoms. He said absolutely no HRT for 5 years, afterwards we could think about it.
To be honest I'd rather put up & shut up than risk cancer again so I will not be taking it - ever!
I've recently been taking evening primrose which seems to be making a slight
difference - it's early days so hopefully it will
continue to improve

Re: Triple negative and HRT

Catch pole - timely post for me as I went for a smear yesterday and they couldn't get access due to dryness brought on by memopause. GP suggested short time HRT but I'm not sure. I've phone the hospital to get their view on it.

Strangely enough it was six months or so prior to be diagnoses with TNBC that I got my BC confirmed. I took HRT for say six months to easy memopause issues then got BC. So like you I'm thinking there may be a connection.

Anyone help or advice for getting a smear with a very dry lady part?

Pam

Re: Triple negative and HRT

Hi,

 

Dont want to alarm you but i had a very early menopause like my mum, who suffered from severe osteoporosis, so i wanted to prevent this.. Therefore i was on HRT from 41 to 67 till in fact i was diagnosed with breast cancer.  I had a hysterectomy in 2007 as had firbroids, probably caused by HRT. 

 

My oncologist told me that he felt my breast cancer was caused by HRT he was very emphatic about that.  My friend who was with me is nearly 50 and suffering menopausal problems, he told her do not even think about taking it. He said due to my very excellent heath, he could see no other reason for me gettting breast cancer and from the kind of cancer i had was very likely taking it caused it.

 

Hope you dont mind me saying this but i was always such a HRT devotee, but now id say to anyone, dont take it, Yes i felt great on it, and ive got night sweats back but ive no regrets and would never take it again June

Re: Triple negative and HRT

Tried to get smear today but no luck as all dried up. Doctors don't seem keen in offering HRT as I was TNBC, grade 3 with nodes involved.

Any thoughts?

Pa, x

Re: Triple negative and HRT

Hi debbie

if you are under 40 they are usually very keen or you to have some low dose hrt, hwever if you still have one breast they will be less likely to offer it as you have a higher chance of a second cancer and taking hrt has been found to slightly increase this in post meno women... If you have bilateral mastectomy then your risk of a new cancer is so much less that they would prob be quite happy for you to have hrt until around age 50 which is when you normally reach the natural menopause. The hrt does not mean you have a higher level of hormones it basically gives you wee bit hormones but no where near as much as you get from your ovaries so this shouldnt increase your risk.

i hav brca2 and had hormone pos then tn bc. I had a hyst and ovaries out in 2010 but still have both breast as had a lumpectomy after both primary cancers and an excision biopsy of the recurrence in my chest last year, so never started hrt, but if i have a double mx then i may consider hrt, but appart from the flushes and occassional vaginal dryness causing cuts and soreness i havent really had anyproblems. Its not. Definite you will experience problems but it is good to be aware of potential problems.


Take care

Re: Triple negative and HRT

Posted on behalf of new user Debbie

Jo, Facilitator

Hi, I had tnbc last year mastectomy recon, chemo&radio all finished in may. As i have brca1 gene am having salpingo oopherectomy next week as a preventative measure. To be honest am finding the side effects i have read about horrendous. I would really appreciate any advice you can give. hrt no hrt etc many thanks in advance Debbie x

Re: Triple negative and HRT

Hi, yes I am on HRT! I had some bad side-effects from the menopause as I was pushed into it early by chemo. It was my onc that suggested it, so I went to my GP who was happy to prescribe it. I'm taking Livial/Tibolone and have been for about 2 years, and it's been great.
I was a little concerned about it to start, but not only my onc and GP were fine about it, so was a good friend of mine who is a GP. She did some research for me and it did seem ok. I'm now comng up to 5 years since I was diagnosed with TNBC.
I made the decision as the night sweats in particular were affecting my quality of life - lack of sleep was seriously affecting my personal life as well as my work!
I have no regrets at all!!! Speak to your GP and Onc and see what they recommend.
Good luck x

Re: Triple negative and HRT

If you are triple negative they often prescribe low dose HRT. You could ask to speak to your oncologist's secretary, tell her your problem so she can get your medical notes for the consultant to see. The oncologist can then ring you or write to your GP with their Opinion. The other way us to go to the GP and get a letter sent to the oncologist for prescribing instructions.
I hope you get some help soon
Cackles

Guest user
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Re: Triple negative and HRT

Hiya, I was diagnosed with TNBC almost two yrs ago when I was 30, I had diep and fully hystorectomy due to be BRCA1. I am on an oestrogen only hrt, I was also unsure about taking that so I got my GP to write to the Marsden who advised that it was fine for me to take, I have no symptoms at all now! hope that helps xxx

Re: Triple negative and HRT

ps - cold turkey on holiday does not sound like fun 🙂

Re: Triple negative and HRT

Thanks very much for the links and advise, I will discuss it with my consultant, I'm going back to my gp this week so i will ask about the anti-depressant x

Re: Triple negative and HRT

Here are links to some respectable reports on the subject of TN and HRT:
http://www.breastcancer.org/risk/new_research/20080923.jsp
http://news.cancerconnect.com/hormone-replacement-therapy-after-ovary-removal-may-be-safe-for-brca1b...

As to sleep problems, I take 10mg of Amitriptyline each night and it makes the world of difference. It's an old fashioned anti-depressant but at low doses (10mg or 20mg) just acts as a sedative. It has the advantage that it's not addictive, unlike Zopiclone. I tried that and found it worked great for 1 or 2 nights but if you take it for any longer you get a terrible rebound effect. My GP warned me about that but I wanted to try it anyway - ended up going cold turkey while I was on holiday!

Triple negative and HRT

Hi x is there anyone out there that has had triple negative breast cancer and is taking HRT? I had lumpectomy, chemo and radio in 2006. Since discovered I have BRCA 1 and had DIEP reconstruction and more recently I have had my ovaries removed. I am really struggling with menopausal symptoms especially night sweats. I am currently taking Clonidine which has helped during the day but had no impact at night, I have also tried Venlafaxine but it makes me vomit. I have now been prescribed the sleeping tablet Zopiclone which I know is only short term. I am really struggling to concentrate at work and be a mother to my 6 year old twins surviving on a couple of hours sleep. I understand the reluctance to prescribe HRT but cannot see any alternatives. Help???

Karen x