Just wondered if anyone else who is triple neg has had a conversation with onc/GP about any sort of HRT? I’ve had some post-menopause problems, the usual, flushes, (too) painful sex, no sex drive, mood swings etc… As I am triple neg, the onc had said he didn’t have an objection to me asking my GP for some sort of HRT. I went to see her yesterday, and have been given Livial (active drug is called Tibolone) She would have been happy to give me an estrogen pessary if I don’t get on with the Livial tabs.
But I’m still worried by the HRT/BC link, and found details on t’internet about a trial with this drug showing links to BC, but it didn’t specify if this was triple neg, or hormone related BC.
Anyone else had any experience with this? I have left a message for my onc to check with him.
hi shannon,
sorry i can’t help with your questions, but as another trip neg, i also wondered about hrt, i am 46 and haven’t had a period for 9 months now so presume early menopause from treatment, but my mood swings, facial hair and low sex drive are driving me mad!
i would be very interested in what happens with you so please keep posting or pm me with updates.
good luck
mandy
Thanks - will keep you posted - still waiting for onc to call back.
All my treatment details are on my profile… I’m 47 now, periods stopped during treatment, returned a year after I’d finished chemo, but only lasted 4 months, and stopped again. That was just over a year ago. The Livial can only be used after a year since last period. My initial reaction was they looked great, just what I needed, but having done the research, I’m now having doubts…
My gp put me on HRT when I went on the change in my mid thirties. I had been on it for nearly 10yrs when I found the lump in my breast and came off it immediately! I was diagnosed with grade 3 triple neg bc and my consultant believed that it had developed because of the HRT. I just didnt tick any of the other boxes being a slim,fit and active vegetarian with no cancer at all in the family, I’d had my 3 children when young and completely breastfed them etc. When I asked why the tumour wasn’t hormone+ I was told it probably started out as one and changed to trip neg along the way. I wouldn’t touch any form of HRT with a barge pole!!
Josie x
Hi Ladies
I was on Tibolone when I was first diagnosed with DCI in 2004 and was told in no uncertain terms to stop using it immediately only had WLE at that time no chemo or rads. Then in 2008 lump in other breast this time the works TAC chemo, bi lateral with complete node clearance on that side and rads. I had started to grow a ginger beard and moustache whilst on Tibolone and I wouldn’t touch it with a barge pole. I don’t know if it did make a difference or no, but both my Gynea Consultant, and Oncologist advised against any form of HRT even though I was triple neg, the Gynea even warning against any of the herbal replacements especially Black Cohosh. I have taken up walking and swimming not only to get fit but it seems to help with mood swings and hot flushes.
So good luck girls
Nonny
My BC is ER pos when i was dx last november . At that point i had been on HRT for 18 years , oestrogen only as I had a hysterectomy at age 36 .
I had 18 years of feeling fit and well on the HRT , and despite having BC I am glad I took it . If menopausal symptoms are bad there really seems to be very little alternative that works .
I’m sure there is a link between HRT and BC , just s they say there is a link with sugars and alcohol .We all have to do what we consider to be the best for ourselves.
Obviously , I came off the HRT immediately , and have struggled ever since with the effects of giving it up so abruptly .Now on letrozole , so the side effects of the menopause are worse than ever .Having mood swings can be terrible , and I don’t think it’s fully appreciated just how bad it can get .Oncologists don’t really want to know .
Am currently using the ladycare magnet , having acupuncture , and am also considering progesterone cream .Tried black coahosh , did nothing for me , dang quoi I think helped a little .
Good luck , I hope you find something that suits you .
Kris
Thanks for the feedback ladies. The more I research and hear, the more worried I am, and don’t think I’ll continue with the tablets.
I’m having generally moderate sysmptoms when it comes to hot flushes and moods, all I can cope with. The main issue, to be honest is sex. And not just lubrication, it’s just so painful. I’m 47 and only got together with my partner just over a year before I was diagnosed, so although I don’t miss it (as I now have no libido at all), I know he does. I feel guilty that we can’t have a normal sex life. He seems to think it can all be ‘fixed’. Hence my asking the GP for something. I’ve been told about an estrogen pessary, which may help the ‘local’ issue, but it’s not going to bring back my libido I guess.
I’ve been quite upbeat and everyone says I have been so strong while going through treatment, but this has really got me down.
To be honest I had very few menopausal symptoms after suddenly stopping the HRT but it was just before chemo started so maybe that overshadowed things! I did have a few hot flushes after finishing but only for a couple of months. Like Nonny I took up walking and try to powerwalk most days.I find its really helped with the bloating and as for mood swings - a good walk always lightens my mood whatever the weather- and it’s also kept the weight off.
Josie x
i am possibly going to get HRT when i get my ovaries out… i ahve had a triple negative cancer and a ER positive one but im not going to rule it out.
if you still have your ovaries it may be a different thing but without your ovaries the minimal amounts of hormones from both combined and oestrogen only HRT the risk is still way less than it is with ovaries and no HRT.
there has been lots of research on this but it mostly seems in relation to BRCA carrier of which i am one.
ill see if i can find any more research for non BRCA carriers as it would obviously make life a lot earier for menopausal BC patients whether its chemically induced or natural.
if you have vaginal symptoms you can get extrenal oestrogen eg vagifem pessaries which you can take long term and are extremely low dose as it isnt systemic like tablets are… and is oestrogen only which isnt associated with increased BC which is linked to combined type. if you still have your uterus however they wouldnt give you oestrogen only tablets as your uterus needs protected.
you can also ask your onc for the evidence behind his decision to give you… why not arrange to go back and speak to him and get some professional advice.
josey unfortunately when it comes to BC you dont need to tick any boxes to get it… theres plenty young, fit, healthy, active, non smoking, non drinking, vegetarian, dairy free, breast feeding young mums on here who still got BC.
Thanks Josie and Lulu for the info, very useful. I’ve still got all my ‘bits’ and menopause was chemically induced. I have passed all the details onto my Clinical Trials nurse (she works more closely with the onc than the BCN) and she is going to get him to call me on Monday once he’s had a look. I’ll let you know what he says…
I had mastectomy, chemo and rads 3 years ago, and am triple neg. Chemo induced menopause left me with severe and painful hot flushes and night sweats, to the point that they were wrecking my already wrecked life!! I expected the heat, but no one ever warned me they can hurt, and feel like worms crawling through my body, just before the heat hit me! Chemo left me with bone and spinal damage, so I am disabled, and in constant pain, and on morphine.
My OH and I weighed everything up about a month ago, and tried to work out what was the most difficult aspect of my complicated life at the moment…and it came down to the hot flushes!! Greater than the pain I am in, the depression and anxiety I suffer, and the fear of the cancer returning, so it gives you some idea how terrible they are! I thought that after 3 yrs they would have started to go away, but they just seemeed to ramp up in intensity. I tried stopping my other meds, including morphine, in case they were caused my them, but nothing worked. I have tried everything…I don’t drink alcohol, coffee, I drink soya milk, tried EP oil, all the natural stuff, chillow pillow and on and on!!
Saw my breast surgeon, and she said that given I am triple neg, it is worth trying HRT, and that at the end of the day, quality of life counts for something, so I took the plunge. It has been almost a month now (Tibilone) and I am finally having a better time of things!! I am not happy about being on it. I fought the decsion for a long time, but I am glad I chose it now I have less pain and discomfort.
It is not for everyone, I know there are risks, but in the end, I don’t think I had much choice.
Best of luck to you all in whatever you choose.
Jax
Allthe best Jax ,it must have been hell for you , and sometimes it´s just not appreciated just how bad they can get , where despite the cancer it´s the hot flushes etc that are taking over your life.
At least you´ve got the backing of your breast surgeon , and being triple neg , it has to be an option as oestrogen is´nt a factor in your BC.
Kris
Thought I’d update this now. I have now checked with GP and Onc (by phone), and both have said they are happy for me to take Livial (Tibilone). I won’t be on it full-time, or for a long time, but have been given 3 months supply to start, and am now about 3 weeks in. Hot flushes have died down considerably, and I’ve managed a few nights unbroken sleep. Also managed to ‘do the deed’ with OH without pain! On the down side, I did get a bleed, or period of some sort, so will have to monitor that, as I’m pretty sure that’s not supposed to happen.
Next Onc check-up is in September, so I’ll report back once I’ve been in to see him. Not the perfect option, but certainly worth trying.
Take care all, and Jax, I hope thing are improving for you now too.
Very pleased it´s working for you Shannon , sometimes you have to do what you think is right for you , no matter what .
I´m still struggling , like the other ladies , I walk 4-6 kilometers every day , go to the gym three times a week , but nothing is helping my flushes or sweating , it´s constant , day and night .
Hoping to get an appointment to see one of the doctors at the hospital to ask for gabapentin which has been reccommended by one of the breast cancer nurses .If that fails , then I will come off the letrozole .
Kris