Hi there. Just this week had my DCIS diagnosis and am reeling - totally out the blue. All moving very fast so wanted to ask the community about HRT. I have been told to just stop it immediately. Im peri and been on it 18 months or so. Really concerned all my symptoms will just come back. Can anyone give any advice or perspective if they have had to do this and what has happened to them?
Hi kittykatster and welcome to the forum. I am SO Sorry to see you join the club that no-one every thought they'd be joining 🙁
You've found the right spot here tho, for support & info from those who've 'been there, done that'! So hopefully we'll be able to smooth the way for your own story. Make sure you take a trusted friend or family member with you to your appointments, as a 'backup set of ears', as it is difficult remembering everything that is said. Also, consider recording your sessions on your phone, so you can go over it again later, for the same reason. 😉
Mine was ILC - I was lucky to only have the one lumpectomy, rads & tablets .... and have recently finished with the tabs now! I had a BC 'scare' about 20+ years ago, when I was on HRT cream. It also had testosterone in it. The testosterone had made my breasts go very lumpy & I also went off it cold turkey. It was not fun.
Re going off HRT .... was it your GP, Onc or Surgeon who advised you to go off HRT? There has been a lot of discussion recently, that HRT isn't considered the 'bogeyman' that it once was, so start with your Onc first, I reckon, as they are the ones that will be dealing with your meds prescriptions re hormones etc.
What are the symptoms that you expect to experience when you go off it?
Hot Flushes, depression, sleeplessness, aches & pains .....
Check out this info, re a patch that is available to reduce both hot flushes and the need to pee - ask your Onc about it. .... You might even be able to cut the patch in half & use a smaller dose, if the smaller dose works for you! :)
https://www.breastcancer.org/research-news/oxybutynin-helps-ease-hot-flashes
Check out these podcasts - many of them refer to HRT & cancer .... and suggest natural remedies that can help. (Do 'control F' & search for 'HRT' to find HRT specific topics.)
https://podcasts.apple.com/au/podcast/the-menopause-and-cancer-podcast/id1631842514
Don't forget - you can whack up ANY question - remember there are NO dumb questions!!! This diagnosis can really muck with your brain too - so if you feel sad, angry, distressed .... ask your GP (or your treating team) for a referral to see a counsellor .... or ring our Helpline here on 1800 500 258 (Mon-Fri 9-5) for a confidential chat.
I'd suggest you also listen to Charlotte Tottman's podcast (link below).
She is a BC specialist counsellor who was diagnosed herself, and had a double mastectomy, so knows EXACTLY what we've all been thru, both emotionally and physically! Her own reaction to her diagnosis was also quite different to what she 'thought' it might be, given that she'd been counseling women's reactions for some years before, so thought she 'new' what to expect! She is VERY easy to listen to, too xx
http://www.drcharlottetottman.com.au/my-podcast.html.
There is HEAPS of info in the link below to help you navigate the blog and also some tools to evaluate your own physical and mental recovery thru your ongoing treatment! xx.
https://onlinenetwork.bcna.org.au/discussions/general-discussion/a-big-welcome-to-all-new-online-network-members-/222737
Take care & all the best for your surgery & ongoing treatment xx
Thank you so much - great info and advice. Notes made and love the recording suggestion. Mind is a complete blank now from what was discussed.
If like me you are ER+PR+ and you have the hormone receptor positive cancer, then it's likely that your doctors will say stop it ALL being both patches/gel (eg Sandrena) and intravaginal (eg Ovestin). My oncologists and GPs agree that patches/gel are too risky as increases circulating levels of estrogen. However on topical estrogen, doctors can disagree sometimes depending on which doc you talk to you might get an ok. My 1st oncologist didn't want me to use it so I changed oncologists! In interim my GP and Menopause specialist have agreed the RACGP data says you can take it - just best to monitor estrogen levels regularly. I had god awful vulval itching (one of the 4 symptoms I was managing with HRT) and it was really bad through chemo and continues to be an issue so I am using Ovestin & accepting the risk while being tested 6 monthly to check my circulating estrogen levels remain low. If you need to take hormone/endocrine therapy many of the side effects HRT resolved can come back (but don't always for all), so although through BC treatment the joint pain, hot flushes & low/variable mood was gone for me even off patches, now I'm taking Letrozole for next 5yrs, all are back in varying, different degrees now and likely for as long as I remain on it (so basically I'm in round 2 of peri just starting more symptoms in a quicker timeline). Hope this helps :)
Fantastic info and insights - thank you and I have an appointment at my local Meno clinic post radiation therapy already booked in so will be good timing to ask all the questions needed. Interesting that it could be some of the past symptoms dont even come back - would love that but the heads up on having peri again....lets see how I go :) Gonna focus on getting my body and mind through the ringer and all the challenges about to happen and appreciate your advice. The vulnerability of being half naked with my boobs out is also a very tough thing for me too - the actual physical aspect is very confronting on that alone. Insecurities are running riot. Thanks again and take care.
