Confused & Overwhelmed

SlimTee

Hi everyone
I'm brand new & so overwhelmed. My nurse has passed on theses details & I'm looking to share my story, offer my support & hope my new sisters can help & guide me please. 

I've got a small 11 x 8mm cancer. Grade 2, invasive ductal, ER 95%, PR 95%, Her negative & I'm  booked for surgery 24 October.

I've been told to have the Mirena removed & stop all HRT immediately.  I'm 57, fit & in good health. I'm in menopause & have been on my HRT for a bit over 12months. I'm currently on Ovestin three x week & Sandrena & Androfeme daily as well as having the Mirena. 

From all I've read I'm really concerned about stopping the HRT as I feel that the risks I will expose myself will outweigh any benefit.  I also wasn't sure about stopping "cold turkey". 

If anyone can offer any info about this type of cancer & has continued with their HRT etc I would be extremely grateful. Thanks.

iserbrown

@SlimTee

Welcome to the forum!

https://www.bcna.org.au/resource-hub/articles/types-of-breast-cancer/

A link for you to read and absorb information on your diagnosis. 

You stated above the medical advice is stop HRT immediately!  



Take care

SlimTee

Thank you for getting back to me. I read the article on my type of cancer thank you.

I'm just very worried about stopping HRT so suddenly but most of all the other risks I'm exposed to.

Was hoping someone who has had hormone receptor-positive cancer could shed some light re HRT. Thank you.

arpie

So sorry to see you join us here, @SlimTee .... I was on HRT 25 years ago & had an abnormal breast screen & was advised to go off it (which I did) .... then fast forward 20 years & I was diagnosed with BC . Like you, I was Er+ Pr+ Her2- (tho I was invasive Lobular) ... I had a lumpectomy, radiation & hormone suppressing meds (that I finish next year.)

Stopping the HRT 'may' increase your menopause symptoms (hot flushes in particular) ... but until told otherwise, it is better to stay off them for the time being x

It is a real roller coaster ride - no-one can prepare you for the angst/worry/fear that a BC diagnosis will bring.  A mix of anger, sadness, fear & denial is 100% normal  .... but with the support of your medical team, family, friends and us - you WILL get thru this & all going well, go back to a normal life xx

Check out Charlotte Tottman's podcasts on her own journey thru BC (she is a specialist BC Counsellor) ... her podcasts are very easy to listen to & are full of information on how to 'cope' .....  Start with Series One - then go on to Series 2
http://www.drcharlottetottman.com.au/my-podcast.html

Also check out this post with a lot of info on the forum - including what to take to hospital and 'tick sheets' to self assess your mental & physical journey.  We have a few 'off topic' threads that you may like to check out too ..... 
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

If you'd like to chat with someone, give our Helpline a bell on Monday-Fri (business hours) but as they are now closed for the weekend, please just put up any query that you have here, & we'll do our best to help you xx

take care & all the best 

iserbrown

As @arpie said above it is wise to stick to the medical advice given. 

There's a search bar at the top of the discussion page for you to try and find if anyone has stayed on HRT 

Take care

Katie46

Hi @SlimTee, I was 50 when I was diagnosed, stage 2, grade 3 IDC with 1 lymph node involved. My treatment was lumpectomy, chemo, radiation, hormone blockers. I wasn't in menopause when I started this journey, so can't help with the HRT question, but I did have a mirena which both my surgeon and oncologist wanted removed before I started treatment. They'll want to stop anything that may interfere or conflict with your treatment. The early days of diagnosis is very overwhelming as a lot of decisions need to be taken very quickly, but this group is great for support and advice, and there are lots of people here doing through the same journey.

Best of luck with your treatment, and don't be afraid to ask lots of questions. 

WhiteLight

Hi @SlimTee,

I had the same as you and it’s a shock with tough decisions to make.
I had been on HRT for many years before my DCIS of 17mm and IDC of 7mm was diagnosed, E & P positive HER2 negative. My GP who gave me my biopsy results said to stop HRT instantly which I did. I had no drastic side effects just menopause symptoms, that became gradually more noticeable after about 3wks, they can’t be avoided but weren’t too bad, for me.
After surgery, luckily no chemo just radiation followed by Aromatase Inhibitors. Hot flushes worse than expected now and GP monitoring calcium levels but better than cancer returning, I think. If you’ve been told no more HRT I doubt your GP will give you any more prescriptions as your body would use the eostrogen to make more cancer cells. Arm yourself with all the facts from your surgeon and oncologist then talk it over with your breast care nurse or family. Menopause isn’t pleasant but neither would more cancer be.
Wishing you all the best, R

SlimTee

Hi everyone. I've woken up feeling much better. Thank you for your responses & words of encouragement.

I've spoken to my son this morning & he has reminded me I need to get through this current challenge before overthinking the future, and with surgery booked next Thursday things are in motion. 

I see that the current course of action for me is to stop the HRT as recommended by my Surgeon however I will still continue to educate myself and wonder if anyone knows of any Oncologists or Urologists specialising in hormones & Menopause. 

I know of the protective role hormones play for us ladies and it terrifies me to think that I'm exposing myself to cardiovascular disease, dementia, alzheimer's, muscular skeletal & the myriad of other conditions by stopping HRT to manage the recurrence of hormone receptive positive cancers. 

Thank you & so grateful for your support everyone. T

arpie

Great advice from your son, @SlimTee - definitely do not get 'ahead of yourself' and stress out on the 'what ifs' .... cos they probably will never happen xx  

Rest easy xx Your Medical team is deciding the best options for you, going forward, so put your trust in them xx

iserbrown

Dear oh dear!  You are getting yourself stressed over things that may never happen!  I have a younger sister with Alzheimer's, nothing to do with Breast Cancer and or HRT 
Be kind to yourself!   The upcoming surgery and treatment plan will be here this week.  What type of surgery are you having?  Is it breast conserving?

Here's a link if you haven't seen it already that may help you

Take care

Types of surgery for breast cancer (bcna.org.au)

Afraser

Now is the perfect time to develop
’living in the moment’. Anticipating what may happen in the future is hardly productive - you didn’t anticipate breast cancer! Your energy is best expended on your treatment and a positive attitude towards recovery rather than what may or may not happen. You have an oncologist because he/she knows more than you do about cancer, including breast cancer. Ending HRT treatment, while dealing with your cancer treatment, does not mean never ever, just not right now. Depending on what surgery/reconstruction is recommended or chosen, that’s quite a bit to concentrate on in the meantime. Very best wishes for a successful
outcome, rapid recovery and plenty of calm time to consider what options are open to you in the future. 

cranky_granny

@SlimTee all of the above is so good and many of us have been there.  I have same diagnosis with slightly larger invasive tumour left breast.  I also stopped HRT and will not be going anywhere near it again. Though I started menopause at 38 way too young apparently. Found the lump at 59 years old

March forward nearly 8 years Im still here Metastasis and all. I still now don’t look too far ahead. Or look back at how I got here.   Stay Off Dr google. Its outdated and over  emphasises everything that can go wrong rarely see anything on there that is good news  Only trust reputable sites. Check out the various podcasts on here. They are great. 

I have had to put my trust in my treating team all the way through Its not just 1 person finding the best options To give you. If you have a question of them ask  if your unsure ir don’t understand ask the people who have the answers to your situation.  Go with a list and take someone with you. You can miss so much when your head is spinning from it all. 

One step at a time. One day at a time. 

All the best with the treatment ahead.   Keep us updated with your progress. 

MrsMorrisey

What a wise son you have. Its always a good parenting moment when your kids come out with a wise comment. A credit to you. I'd be getting as far away from HRT as possible. For all you, your body has gone through it all and when you stop, you may not notice. 
With regard to the diseases you mentioned, as women we all get older and most don't develop these conditions otherwise we would all decline after 50!
 Our bodies know what to do when it treated well. 
Keep us posted on your surgery and treatment.