Newly diagnosed - feeling lost despite stuff happening.

Beatha

I was diagnosed a few weeks ago, rarer invasive mucinal carcinoma.  Coping well with what I know is happening but not so well with what I need to do, or where to get explanations.  I’m having a Scout clip implanted tomorrow because I can’t have the MRI my surgeon requested. I have a  CRT (heart) device and MRI was requested because the cancer is not well defined.  So now I won’t know extent, lumpectomy, mastectomy, until the operation.  Operation is on 28th.  I guess my main thing is who to talk to about what will happen next.  Having Pre Op stuff at GP next week, but do I just wait until the hospital gives me more detail? Do I ask to see a breast care nurse, there’s one at the surgeons office? Seeing GP I have so much to ask and take in because I’m on lots of drugs for too many health issues and I have to stop some, take less of others.  And my normal confidence has flown the coop.  Is this just a normal reaction?  

Afraser

Dear @Beatha

Confusion is about the most normal reaction you can have. Yes, if there is a breast care nurse available, make the request. Is there someone who can go with you to consultations? Research shows that in the early days of diagnosis, the capacity to retain let alone understand everything discussed at a consultation is quite low. Someone not so intimately affected to take notes and ask questions can be invaluable.  What’s important to you is to understand the nature of your cancer, the likely recommended treatments and the possible side effects. It’s important to know that not all patients get even common side effects. Your GP may be helpful but remember he/she is not a cancer expert. And cancer is not all one thing. 

Treatment can be very effective, not all side effects are difficult, don’t be put off about getting information - some find it easier with limited information, but I wanted to know as much as I could. We are all different. Take heart, and reclaim your confidence in yourself! Best wishes. 

Beatha

thanks so much for that.  It’s so unusual for me to be like this and I’ve dealt with some major health battles.  I think part of it is I feel so well.  So it’s just not making any sense.  Going to rest big my surgeons office and ask some questions.  

arpie

So sorry to see you joining us here, @Beatha ..... Yes, feeling anxious, emotional and even scared are totally normal reactions to a BC diagnosis and we've all felt that.    If it feels a tad overwhelming, have a listen to Charlotte Tottman's podcasts on her BC journey .... she is a specialist BC Counsellor who was diagnosed 5+ years ago & was surprised that her own reaction to the diagnosis was different to what she'd been suggesting to her clients .... They are VERY easy to listen to & will reassure you that what you are going thru is totally normal xx. She has done 2 'seasons' ... listen to the 1st season first.
http://www.drcharlottetottman.com.au/my-podcast.html

Consider recording your appointments too, on your phone, as it is very difficult to remember all that has been said at the time. xx

You can read other member's stories about mucinal BC here:
https://onlinenetwork.bcna.org.au/search?domain=all_content&query=mucinal&sort=-dateInserted&scope=site&source=community

If you'd like to talk to someone, give our helpline a call on 1800 500 258. xx

Check out this thread for lots of info on the forum, with tips on what to take to hospital and some 'tick sheets' to self assess your own mental and physical health, post op.  We have lots of other 'off topic' posts that you may like to join in too - even some funny ones, for a laugh! xx
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

Have confidence in your medical team to give you the best treatment for your situation, for the best outcome xx

take care & all the best

Daina_BCNA

Hi @beatha, I'm glad you found the online network and that @Afraser and @arpie have already been able to provide support and share their experience. 

As @arpie said, please do give us a call on 1800 500 258 and we would be happy to talk though any of your questions and help you navigate next steps. With surgery scheduled for 28th, you can also call us and we would be happy to arrange your free My Care Kit which includes a Berlei post surgery recovery bra.   

Beatha

thanks.  Will do that tomorrow.