Hi , I was just diagnosed with lobular breast cancer yesterday ,it is sensitive to hormones and I’m on hrt, they suggested reducing it, I just wonder if anyone has had to do this and how quickly did you do it?

Hi!  Invasive lobular carcinoma here too.

Not on HRT but was on the progesterone only pill (Desogestrel) and was told to stop taking it immediately as it "feeds" the tumour.  I'm 52 and waiting to see if my periods have stopped.   

Sorry you find yourself here, but it is an amazingly supportive group and hopefully you will get your answer soon.

Take care,

Jo xx

Thank you Jo , sorry you are going through this too 

  Xxx

Hi, I would talk to MacMillan and/or your gp, I was on hrt and my oncologist said stop it all and get the coil out ASAP. Has the oncologist offered no advise? Really they should be the experts in this. My BC wasn’t hormone receptive but it was my second breast cancer under 50, just, so they said I was too high risk. I hope you get some more helpful advice from the oncologist x

Hi Thank you, the breast surgeon yesterday just said they advised me to reduce it and to talk to the GP, I’m going to try again to talk to the gp tomorrow, but as far as the hrt has been my gp has been pretty useless, so I’m not holding out much hope for either getting to speak to anyone , it’s always a nightmare trying to get an appointment and I can’t see that they will say much except just stop everything. So I just wondered what othe4 people had experienced. I can try the hospital again tomorrow. 
when you stopped was it just everything suddenly or weaned off?

No it was everything suddenly, mirena coil removed and estradiol stopped cold. I felt wildly hormonal for a couple of weeks and then started chemo and then felt chemoish and it was hard to tell the impact. Now I’m on nothing at all. I’m single so don’t know if I have vaginal dryness, I can have low mood sometimes, struggle to keep my weight down and have some night sweats but otherwise feel ok, not as bad as I thought. It can be really hard to get good advice x

Thank you, That all sounds tough to go through, yes very difficult to good advice from the health care team, they seem to be on the fence, I think there is a lack of good evidence so a bit hit and miss unfortunately

Hi sorry to hear that you have been diagnosed with invasive lobular cancer. I was told that I had to stop the hrt immediately and the mirena coil too as I was told that would feed the cancer. It wasn’t too easy coming off hrt as some of the symptoms came back.  After treatment I was put on letrozole and that brought my menopause back with a vengeance. You will get through this. Sending healing hugs. Jxxx