Diagnosed this week and struggling

Sammie_909

Hello everyone

I'm glad to have found this community. 

I found a lump a few weeks ago, had a mammogram, ultrasound and biopsies and have two tumors in one breast, both invasive, one lobular and one non-specific. Both stage 1-2. 

So many thoughts and so much stress at the moment! I don't know how to cope at times. 

We don't have any BC in our family but I did have a close family member who had terminal C as I was growing up. With that experience, it left me with a possibly excessive fear of getting C. I find myself thinking, yes they think I have early stage BC, but what if they are wrong, what if it has already spread, and what if it has gone to the breast from some other tumor that I don't know about yet. 

My husband is incredibly supportive. He thinks it would be worth getting some counselling to help me get through this period and give me ways not to catastrophize. 

Just wanted to reach out and see if anyone else has been in a similar situation and how did you cope? 

Thanks  

MelV83

Hi @Sammie_909, so sorry to see you here. As someone with anxiety myself, I found that using my normal anxiety strategies were helpful. 

So with my diagnosis I needed to know as much as possible about my type of cancer and my histopathology report, and then seeing the results of all my scans. Asking the nurses and doctors to just be honest and upfront helped me more than anything. When I had worries, like that one of my tumours had grown I would just ask during the next ultrasound (which was for my clip insertion) for them to measure them for me so I knew for certain as I could see the numbers of the screen. I also found journaling a way to get out everything going through my head. 

If you are going through the public system they do have onco psychologists but the waiting lists can be long. I have found listening to the upfront about cancer podcasts the best because I could listen to someone describe how they dealt with something I was worried about. The BCNA helpline is also good to offer a supportive ear and some advice. 

Do you have a breast care nurse yet? I found mine to be a great personal support also. She got me earlier appointments and advocated for me to doctors and gave me information and support about things that have worried me recently. 

Not sure how much of that is helpful but honestly the work that has been done to increase survival rates of those even with metastatic disease is amazing to what would have been the prognosis 20 years ago. Please feel free to reach out if you need support and look after yourself x 

Tri

Hi @Sammie_909 I hear you and sending you lots of positive vibes. 

I agree with @MelV83 suggestions like the BCNA network podcasts and don’t forget their helpline. Information is helpful and I too felt some comfort that research and treatments are continuing to evolve and improve and enjoy strong success rates. I am sorry to hear about the impact of your family friends cancer experience ❤️ - it’s very relatable. I focused on the many women I knew whose treatment had changed their outcomes and whose friendships I could still enjoy 🌻🌸

I had a slightly different approach to information (it worked for me - everyone is different) which was not to read about everything, but to take it step by step in phases. It varies from person to person but my treatment plan was sequential- almost all of us start with a battery of diagnostic tests which is in a way quite comforting, but it then diverges.  In my case I had neo adjuvant (pre-surgery) chemotherapy and immunotherapy, surgery (breast conserving), radiation therapy, then more chemotherapy.
So in my treatment plan there were “stage gates” where the oncologist and surgeon would assess my response to the treatment and tweak or alter it. So it was best for me not to get too far ahead of myself. 
Asking for a bit of detailed information from my medical team and having my oncologist explain if there was any relevant evidence base (like trials and research) that guided their recommendations helped me appreciate the breadth of knowledge and statistics that informed their approach.
My GP was great too. I had been referred to a McGrath foundation breast cancer nurse who was a help in the early weeks but once I started active treatment the nurses in my day ward were fabulous. 

We are all wonderfully different in how we need to grapple with this challenge in our life but we on the network are also in solidarity with you 🌻
For sure we are best off accessing the formal and informal support of others that works for us. 

Sammie_909

Thank you so much @MelV83 and @Tri for your replies. 

I will be going through the public system and have yet to have my first appointment with the surgeon. The appointment is only a few days away. The breast care nurse called me last week to introduce herself and I believe that herself or one of the other nurses will be at that appointment too. 

I have been looking through my biopsy report, looking up any words etc that I don't understand and it seems that my BC is positive for estrogen and progesterone, which from what I understand is pretty common for BC. Looking at the report and seeing what exactly is going on has helped a lot. 

I hope they too send me for a battery of tests, I really want to make sure that it isn't anywhere else. But I'm also thinking that if it is, that there are treatments for all of it. I like the idea of the stage gates and I am trying not to look up too much information on Google as I know I tend to catastrophize and always put the worst spin on my situation. 

I do feel a little better about it today (less tears), but I know it will be very up and down for a long time yet. I will definitely listen to some podcasts from here. 

Thank you again 💜

Tri

You’re welcome @sammie_909 - I will be thinking of you and wishing you the best as you take your next steps 🌸🌻❤️

arpie

Sorry to see you here, @Sammie_909 ... the club that no-one ever thought they'd have to join.    Whack up any questions that you may have & we'll do our best to give you honest answers, as we've 'been there, done that'. 

That is terrific that your BC Nurse will be with you at the surgeon's appointment .... I'd also suggest you take a trusted friend or relative as well, as an extra set of ears ... as you can never remember everything that was said.  (I also recorded mine on my phone too - as backup, to go over again, afterwards, if you need to.)

The ladies have given terrific advice - and I echo re chatting with our Help Line on 1800 500 258 if you are finding things a tad overwhelming xx.   Also, consider listening to Charlotte Tottman's podcast (she is a specialist BC counsellor) on her own treatment after she was diagnosed with BC.  She is very easy to listen to & covers pretty well all issues that we've all had, once we get diagnosed.  
http://www.drcharlottetottman.com.au/my-podcast.html

Some questions you may like to look at, re your surgery appointment ..... 


Your emotions are totally normal - I'm the first in my family to be diagnosed with cancer too - and had been given a clear Mammogram just months before my GP physically found it!  I was shocked & stunned & VERY upset.

Check out this post for a heap of info on the forum & some tips on what to take to hospital with you xx  There are also some ticksheets to 'self asses' your physical & mental health too .... feel free to jump onto any of the links - we have lots of off topic threads too - our gardens, art & craft, even 'funnies' (as we all need a laugh now & then.)  
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

Try & take it one day at a time & try not to get ahead of yourself xx. 

Take care & all the best for your appointment next week 

Sammie_909

Thank you @arpie. I am sorry that you are also going through this, and everyone else here too

Hubby will come with me to all my appointments, but I will also take a notebook and pen to jot things down. Thank you for the checklist!! 

I will listen to the podcast you have mentioned, maybe once my kids are asleep!

Thank you again everyone for your replies. I get so overwhelmed at times, and nighttime is the hardest. Every now and again I get an ache in the affected breast and it panics me (it could just be from where the clip marker things were put in during the biopsy, but I'm so paranoid! 

Sammie_909

I do have one question, if anyone knows the answer.
My biopsy result said grade 1 or 2. 
Is this the report that my diagnosis goes on? 
Or could this be wrong / only an estimate? 
Clearly still stressing here  

arpie

Hi @Sammie_909

Great that your hubby will be going with you xx 

If you have trouble sleeping (and many of us do) chat with your GP .... they should be able to help you there.  Not reading or watching TV in bed (just going to bed & turning out the light) may help.

Your treatment plan will depend on the pathology of tissue taken during your surgery and any other scans that may be suggested. The Biopsy is not necessarily the full story xx Yes, it is virtually just an estimate.  Once you've had your surgery & get your game plan, you will feel tremendous relief!  I know I did.   Try not to worry about the 'what ifs' ... it may not happen, so try not to dwell on it. xx  (But we all do it )   Definitely don't use Dr Google!!  A lot of the info is outdated & not relevant to your diagnosis.  

Try & keep as busy as you can, doing stuff you love - it really DOES help pass the time til your surgery xx

Tri

Hi @Sammie_909sorry I don’t know the answer specifically for your diagnosis; but I remember my GP informed me about the breast cancer diagnosis based on a radiologist report on the ultrasound.
I then saw the breast surgeon and she referred me to have a biopsy and other tests (MRI, 3D mammogram, CT and a PET scan). 

These gave her a more comprehensive perspective about surgery and also they informed the oncologist treatment plan. I guess you can separate the process of diagnosis from the discussion about how they recommend the breast cancer be treated. 

I hope this helps answer your question. Rest up.  

Sammie_909

Thank you so much @Tri and @arpie.

So, it sounds like the biopsy results are one part of the picture, and as time goes on, the whole puzzle will come together. Can't wait for my surgical appointment, just want this thing gone and to start any other treatment they recommend. So glad I found this site. And I will definitely talk to my GP if I have trouble sleeping xx 

MelV83

@Sammie_909 I found this article really helpful for understanding my pathology report: 

https://bcna-dxp.azureedge.net/media/dj1lnxxc/bcna_pathology_fact_sheet_2021.pdf

I found my biopsy very painful, but the clip insertion was a little easier. I think once you are aware of it, psychologically you tend to notice things around it a bit more- I liken it to having dental work or losing a tooth as a kid and your tongue can’t seem to leave it alone…

In terms of sleep I found that taking melatonin was helpful in helping me get to sleep. I recently stopped working due to starting treatment so I am used to being up by 6, although sometimes I can be awake for the day as early as 4 now and rather than lay awake and think I tend to pop on here (there is a night owl section) to see what’s happening or reply to someone, and sometimes I put on a documentary on my phone to listen to and relax more so than sleep (although sometimes that works too), or I journal. Then once it hits 6 I try to go for a short walk. Short naps get me through the worst symptoms of the day if I need them.

i felt exactly like you before my first appointment with the breast surgeon- I just wanted it out of me “tomorrow”. Remember that everyone’s treatment plan will be different for your particular set of circumstances- and you will have a whole medical team that will meet and talk about the best way to tackle it. They will explain your stage and grade, and you will have some options to explore. 

And your breast care nurse will have a lot of information books and pamphlets to give you- take them all and just read through things a bit at a time, maybe even highlight parts and write questions next to info you want to ask about. 

Good luck at your appointment and please keep us all posted xx

Sammie_909

Thanks @MelV83. I will have a look at that article. I woke up very early this morning, got a bit upset, then decided to journal. This helped. Thank you. I guess reading that a whole medical team will meet and discuss my best options is reassuring, at this stage I am prepared that a mastectomy may be recommended due to multiple lesions in one breast, and I think I would prefer that. I have another chronic health issue which they will need to take into account as well so if that reduces my need for as much other treatment (radio/chemo) that could be better. It's very individual isn't it. Well I got through another day and another night. Thank you everyone 💜

iserbrown

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

Pathology after surgery gives a full picture and treatment is decided upon after results


Take care

Sammie_909

Checking in:

I met with the breast care nurse and the surgeon today. 
I have my surgery date for later this year (another kettle of fish of anxiety as I've never had general anaesthesia before).
Surgeon thinks it's early stage and hasn't spread to lymph nodes (but a couple will be taken during the surgery and tested). 

I feel so much better now that I have a date for surgery and have met a couple of the team that will be helping me. Thank you all here for your advice and help too

I will be having a single mastectomy which I am happy with. 

Any tips for anxiety related to the surgery? 

Tri

Hi @Sammie_909 that’s terrific you have a date and thx so much for the update. 🌸🌷
I think chatting to the surgeon or nurse about what you might expect on the day of surgery could really help you. My experience was that the team was very positive and kind. It’s a big thing for us and the teams who work with breast cancer really seem to understand that.