The “journey” begins.

MrsMorrisey

I was diagnosed with grade 2 IDC ER & PR + Her2- on 19/12. I am 50 years old, married with three teenagers at home, two homeschoolers, one working. 

I work as a nurse for NDIS. 

Getting the diagnosis just before Christmas was horrific. 

So far this has been my plan. 

Diagnosed 19/12
Follow up call from GP on 21/12 to see how I was
Nothing happens for a couple of weeks over Christmas/New Year. 

Bone scan and dye CT scan 5th Jan ( all clear and no lymph activity) 
Surgeons appt Jan 8th. 

She was lovely and very respectful ( had sat in on a couple of her operations on my surgical rounds)
She talked me through the process and I felt a lot better after that. She also examined me and noted that the lump that was the issue is not actually the cancer, it’s sitting next to it. I have type D density and very fibrous. 

She mentioned that it’s a tricky one to find and that she’ll need to follow a trail of breadcrumbs. Also mentioned that the cancer is sitting in a DCIS. I can’t find any info on others having that. 

Today I get the carbon tracer injected and she said that will attach to the cancer so she can see what to take. 

Next Tuesday I get the blue dye injection for the lymph node activity then Wednesday have the surgery. 

Nothing happened then everything happened!

All this appt making and  phone calls while attending a cricket carnival for my son 4 hours from home. 

My surgeon recommended this site and I’ve been lurking for a bit but today thought I’d share my story. 

I can’t believe this is happening and I’d love it to go away but it won’t and I need to remember how fortunate this happens in our public system. 

iserbrown

Ductal carcinoma in situ (DCIS) (bcna.org.au)

A link for you to explore and will also give you an opportunity to explore the BCNA website.

cactusk

Hi @MrsMorrisey
Sorry to see you join our club.
I was diagnosed very similar to you but on 22nd November so I'm a few weeks ahead of you.
Yes - the absolute shock and 'what the..' and tests and appointments and scans and just 5 minutes ago life was trundling along and now there's a big plot twist.
The people on this group are amazing - supportive, understanding, there's lots of shared info and experiences.
There's a combination of public and private treatment journeys too.
I've had WLE surgery at the end of November and the break over the festive season was really hard to navigate anxiety wise. 
I'm still very much day at a time - I start radiation treatment in a couple of weeks.
absolute best wishes for you and the next bit, I hope it all goes well.
Kelly

MrsMorrisey

Thanks for your replies. Good to hear your radiation starts soon  Hopefully it’ll be over before you know it. 

No chemo for you? 

The carbon injection wasn’t too bad, not as bad as the biopsy but I got to see the same radiologist and got to say Thankyou to him for finding my sneaky bugger. 

How do you tag or reply to people on here? 

Tri

Hi @MrsMorrisey
so very sorry about your news and diagnosis. I admire your plan -  really well considered and realistic and your wry humour sounds like it will come in handy! Wishing you all the best. 
To tag someone just type @ symbol, then the letters for the start of their ‘name’. For eg in your case I typed @Mrs…a drop down box will pop up. If more than one member is using ‘Mrs’ you will get a list - tap on the relevant name you want to tag. 

You’re right about the biopsy (even though done with great very sensitivity by the Dr) - it’s not fun! But I bet the radiologist was really pleased you took the time to say thanks - it’s a vital diagnostic and we so need their skills. 

Mahjah

@MrsMorrisey I'm similar to you but they didn't find the DCIS until they did the op for the tumour. So round two of excisions. I had to wait a month from when I was diagnosed to when I got operated on. Anxiety was sky high. Now they're doing biopsy of left breast for something they saw on mammogram.  All the best. Remember when you're down that all your pinky boob sisters are cheering you on. 

Sliv

@MrsMorrisey,
Thank you for sharing your story. I am having a very similar experience and sounds like I'm a few days or so behind you.
I found my lump in the week between Christmas and New Year whilst away on holidays and nothing was open. I fumbled my way through making appointments all while trying to not up end the family holiday.  ( I have 3 primary school aged kids who I was trying not to worry)
I was diagnosed with hormone positive Her2 neg just yesterday. I've got an MRI next week and then I suppose I'll have some decisions to make.
I hope all goes well for you next week.
Take care
Elle

MrsMorrisey

@Sliv sorry to hear. What a time to be diagnosed hey? 

I hope your holiday wasn’t too ruined. 😩
I had so much anxiety about the scans but after asking about a million questions to the poor nurse, she assured me that my surgeon was very thorough and it’s common practice for her to order extra tests. 

The relief of being told the cancer hadn’t moved is palpable. 

Best of luck to you and keep me posted on your progress. 

We can be here for each other. 

MrsMorrisey

How do others feel about telling people?

I have found most people are really lovely and as I am a Christian I do have a lovely prayer group who are very supportive and not gossipy

I have had a couple of people say weird stuff like I need to eat a raw diet and cancer is trauma stored in the body. 

The other was can’t they operate on you earlier? 

Don’t you feel weird knowing you’ve got that inside you? 

I feel like I need to present my case in a positive way to shield myself from peoples reactions. 

A bad reaction makes me feel terrible, like they feel sorry for me then I feel the need to be really positive. 

Lots of emotions today. 

arpie

So sorry to see you join our select little group @MrsMorrisey and @Sliv

Re Telling others - I initially told  my nearest & dearest first, and then only after surgery & active treatment, I advised others - otherwise you are just repeating yourself over & over & until you get your pathology back, you really won't KNOW your game plan. 
I let them know that I'd do an email every week or two to fill them in on what was happening - so I didn't have to keep repeating myself, which only kept upsetting ME as much as anything else!  Some of my extended family members didn't find out for a year ....

Some members open a 'private Facebook Page' or a personal blog, and invite important friends & family to join for updates ....  it also ends up being like a diary too .... a day by day narrative of your BC Journey.

It's a good idea to cook up some meals in advance and freeze them, so you have food 'ready to go' after your surgery.  If family or friends offer to bring some meals, mow the lawn or do ANYTHING for you - say YES!   We 'like' to be independent - but this is a win/win situation for both you and your family/friends.   It could even be walking the dog or picking the kids up from school/activities.

Jump onto this thread & it covers a lot of other areas on the forum - including 'other topics' like your pets, gardens, art & craft & other stuff you may like to check out.   We even have some laughs!  We NEED to laugh!  
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

We have a 'Christian Group' that you may like to join .... click on 'Groups' in the Blue Banner above - and the 5th one down is the Christian Group.

Re diet & cancer - there is SO much rubbish out there about BC being caused from what you eat .... if you have a normal healthy diet - you should be fine.   Your Medical team may include a dietitian - or you can ask to see one.  It is always advised to not drink too much alcohol - 

You may find that some friends/family just don't know how to react or what to say - so they do NOTHING.  It is as if they've 'dropped' you, and can be upsetting.  Try not to take it personally .... you may be surprised who will 'step up to the plate' and who will 'disappear'.   It is what it is ..... you will make new friends, and some old friends - you may not see them again!  Sadly, that happens.  Personally, I've made fantastic friends with some BCNA members & we natter away in the background, via Personal Messages.  

Your time frame from discovery to surgery is actually quite prompt for this time of year - I went private for my surgery (to have it done as soon as possible) then all my Onc/Rad Onc is on Public & it has been a very smooth journey. ....
Your surgery date is the 6th anniversary of my own!   Things always move a bit slower over the Xmas Break.   You also have confidence in your surgeon, which is great.  Make haste slowly afterwards.

Take plenty of Deep breaths - take each day as it comes and do NOT try to do things too early after your surgery (eg cleaning etc) as this can actually set your recovery back.   It takes a bit of time for things to settle down, for nerves to reattach .... so little stabbing pains around the surgery site may occur.   

Have you been assigned a Breast Care Nurse yet?  Your surgeon may have her own BC Nurse - or if you are in a public hospital, you may be introduced to a McGrath Nurse.  They are your 'go to' person for initial questions and answers (apart from us!)  

take care, and wishing you all the best

MrsMorrisey

@arpie thank you so much. 

You seem like a very wise and kind person. 

I’m also on mid north coast!
Well happy anniversary for the 17th, it’s wonderful you’re here to help us all. 

I read a comment you said on another thread about being relieved after surgery. 

I’m hesitant but I also can’t wait til next 
Wednesday night when this bugger is gone and getting dissected. 

arpie

@MrsMorrisey - Thank you for the kind words xx   Yes - I did feel so much better after the surgery was over - as I hope you do once you know 'the beast' is gone!    I'd worked myself into a right lather prior to surgery .... It was like a weight off my shoulders.

Feel free to add 'Mid North Coast' or town name in your 'profile', then we can point you to services & activities in the area   ...... Are you in one of the outlying towns, or a major centre?  Being 'out of town', you may be able to claim petrol & accommodation costs thru IPTAAS (Isolated Patients Travel and Accommodation Scheme.)  We have a private group for Rural & Regional patients that you can join and raise any questions re treatment & travel & other areas.   

All the best for Wed 

MrsMorrisey

@cactusk could I be so bold as to ask how old you are? 

Does anyone have experience of no chemo at 50? Most people seem to be pretty certain I’ll need it but there’s always a possibility I won’t isn’t there? 

TonyaM

Hi @MrsMorrisey, depending on the cancer size,pathology and if no lymph nodes involved you might get lucky and just need the anti hormone drugs. I didn’t need chemo the first time but I did when I had a recurrence.Don’t think too far ahead.As far as telling people, I was really sorry I told everyone the first time as I ended up consoling them.I handled it differently the second time by only telling people when I had a plan and information. I also put my husband in charge of answering the phone and front door- instructing him whether I wanted to talk or not. You are going to need about 2wks at least post surgery of being looked after ie someone to cook,clean and maybe wash your hair for you.Time to put yourself absolutely first.Big hugs xx

cactusk

@MrsMorrisey.
No stress at all - I’m 54. I had 2 nodes positive (didn’t appear to be from ultrasound nor CAT / MRI scan, and this was discovered post surgery). I totally thought I was going to head down the chemo path, but my med onc recommended the Oncotype DX test. I looked into it and went ahead. It is expensive, but my recurrence score was low (10) so chemo was shown by this test not to be an affective treatment protocol. I was very stressed before I knew the result, but am very grateful that I was able to get this genome assay done (in the US) and that the result was positive for me. 

I realise that there remains radio and years of endocrine therapy. I’ve been on artificial thyroid hormone since 1998 (total thyroidectomy then 3 x radio iodine treatments ending in 2004) so hormone therapy for years doesn’t phase me. We’ll - hasn’t so far (never say never, right?)
@arpie have said, one day at a time, and every path is similar yet different.
Absolute best wishes for your surgery. 
Kelly

MrsMorrisey

@cactusk Thankyou. I’m so pleased for you. What a relief. 

Does anyone have any knowledge on a lymphosinctigram?

I have searched this site and discussion but can’t seem to find anything 

I’m getting one on Tuesday before my surgery and wanted to hear others experiences of this. I’m happy to get it done but do others have this?