VERY newly diagnosed Mucinous breast cancer

Taji

I found out less than 2 days ago that I have the relatively rare mucinous breast cancer, 3cm in size in one breast... what a shock, and am just starting my journey. I have been reading up on breast cancer types, surgeries, treatments etc., online and in medical journals and wanted to connect with other people who are happy to share information. My diagnosis was made after a mammogram, ultrasound and core biopsy - I am still awaiting the results of hormone tests and yet to have all of the other rigmarole that I need to go through prior to (and after) surgical intervention. I am 54 years old and a retired university professor. I have no known family history of breast cancer on my mother’s side, but we don’t known about my Dad’s side. I have been on HRT since I was 36 following removal of uterus and ovaries (not due to cancer of any type). My risk factors, beyond HRT, include that I have never had children and that I have 4% Ashkenazi Jewish DNA (which, so I understand, can heighten risk). I would be thrilled to hear from anyone here who has advice to offer me and would be especially pleased to hear from anyone with mucinous breast cancer as there’s not a lot of information out there about it. Cheers, Taji

Sister

Hi @Taji I can't offer any help with that particular type of bc but I know the diagnosis would have been a shock.  I was diagnosed in December and have since had surgery and now on chemo.  My best advice is to try to take it one step at a time and stay away as much as possible from Dr Google - at least the general info on there.  You don't say what discipline you retired from but I suspect you're probably someone who likes to research to plan your course.  Your surgeon and team will advise you about your course of action but you probably won't find out exactly what your cancer is until you have surgery.  In my experience, it's only then that they can see the exact dimensions of the tumour, node involvement and hormone receptor type.  
On another note, welcome to this group.  You will find it a great way to connect with others who understand what you're going through and a source of information, advice and support (with a few laughs along the way).
Good luck with the next steps.

Glemmis

Hello @Taji, I was diagnosed with breast cancer in July 2016. My tumour was mixed 60% no special type & 40% mucinous.  Even though it is is rare I understand 100% mucinous carcinoma usually are not aggressive & don't spread to lymph nodes. Mine was aggressive as it had micropapillary architecture & 3 lymph nodes had cancer. The doctors don't really focus on the type of tumour & they  are not treated any differently from other types, I had mastectomy, chemo & radio but hopefully you may not need this. Mine was also hormone positive & I am on Femara. You will have a plan soon & things will be much clearer. Good luck & let us know how you are going. 

Taji

Thanks Sister!!!  While being shocked by the diagnosis, I actually feel better about my having bc than I thought I would - although that may change   And yes, I am a researcher - I specialised in accounting, business and financial history - weird, but more interesting than adding up columns of numbers. Couldn't agree more about Dr Google, which is why I attacked the medical journals instead and joined this forum for reliable advice. Your point about having a few laughs on this forum is actually what attracted me to it - regardless of what happens now and in the future with my bc, I am determined not to let it make me thoroughly miserable.

Taji

Hi Glemmis - thank you for responding. Yes, from what I have read from good sources I have a fairly good prognosis - of course further testing will determine if my tumour is mixed in anyway, but the initial histology says not. Interesting though to hear that doctors treat tumours more generically than I expected - that's good to know and will help me in framing questions when I attend my appointments. Thanks so much 

Sister

Take someone with you to the appointments if you can.  Sometimes it can be a bit overwhelming and a second pair of ears never goes astray.

Romla

Hi @ Taji . Couple of suggestions for your appointments. The BCNA My Journey kit has suggested questions to ask medical staff - I found this useful as I was in shock I guess and somewhat numb and unable to think.Also keep a journal of visits and information given as it can be a time of information overload when you are struggling with just getting thru treatment - yet another reason why having someone accompany you to appointments to supply that valuable second pair of ears.It is a bit of a roller coaster as well as a very busy few months but you will get thru this as we all have sometimes just one foot in front of the other , sometimes just treading water. Best wishes and stay in touch on the blog as we will help you by sharing our knowledge and experience as you go thru the process.  XO

Taji

Sister said:

Take someone with you to the appointments if you can.  Sometimes it can be a bit overwhelming and a second pair of ears never goes astray.

You betcha ... my husband is my rock and he has done more research on this than I have, plus he is the one who encouraged me to join this forum. He will be with me all the way, so I feel very lucky.

Taji

Thanks Romla - I have ordered the kit and the advice about keeping notes is great ... I will start writing things down. Seems to be so much to think about, plan etc. as well as keeping track of advice. I may splurge on a rather special (i.e. disgustingly expensive) notebook as a cheer me up present to myself. 

Sister

@Taji I went to Officeworks (actually went there to get kids school stationery) and bought a zip-up binder and plastic sleeves.  Then a few weeks ago went back and got a lever arch zip-up binder as the first one wasn't big enough.  I've filed all of my documentation in it as it comes (and I've sectioned it into treatment, work/financial, well-being, etc).  I tend to type up my dot-point notes for doctors and also questions so that I've got a permanent record and I include these as well in the folder.  Zip-up means that I don't need to worry about things falling out and I can also pop other bits and pieces in as required, such as the headband for cold caps when I was using them, or my notebook.  When I go to an appointment, I just pick up the folder and it's all there.

Taji

What a brilliant idea Sister!! We have an Officeworks here, so I will pop in tomorrow on the way back from my Drs appointment and get the large version - sounds like an easy way to keep everything in one place & organised. Thank you

Finch

@Taji , sorry you've made it here, but welcome and hugs to you. The BCNA My Journey kit contains a fabulous diary/journal which I use for all my bc related documentation, it was designed by women going through treatment for bc.
I, like you don't want this journey to get me down and am determined to be as cheerful as possible, but at times it will. This is the one of the best places to be when it happens. we're all here to help each other, ask questions, give advice, have a laugh, we all understand. Take care xxxxxx

lrb_03

Hi @Taji. Seeing the responses so far reminds me of what a fabulous group this is. I don't have much to add, other than a warm but sorry welcome. 
I'm sure @SoldierCrab will be along to add her trusty list of resources.
I would comment that whilst there is not so much focus on type, there is a lot of focus, treatment wise, on receptors, and grade or cellular division rate.
Also, theu sometimes can get enough information from the core biopsy, mammogram & ultrasound to decide the order of treatment.

Take care

Taji

Thanks Finch - I didn’t realise a dairy came with the pack - that’s awesome. I feel lucky to live in the age of the Internet where I am able to connect with people who also have bc - I think I would feel very isolated and very down without all of this support and great info and advice.

Taji

Thank you @Irb_30 - as depressing as it is to see so many women (and perhaps some men too) on here with bc, it helps not to feel alone. I appreciate all of the welcomes to this group!

kmakm

Hi Taji. Welcome to this wonderful forum, though I'm sorry you have to be here. You've had some excellent advice so far and I don't have too much to add.

I too have a good prognosis and a lovely husband, but it doesn't stop me from having days or weeks when I feel very down. We all bring other parts of our lives to how we process and deal with treatment. It's a long road. It's important to be kind to yourself, and to be a little selfish when you need to be.

When everything seems to be overwhelming, take it one day at a time, sometimes one hour at a time. This is especially useful advice for us planner, organised types (I visited Officeworks for folders too)! There is no planning for breast cancer and the interruption to our lives can be personally challenging.

I don't know what you're like but I find accepting help to be difficult; I'm the one who helps everyone else! However from the very beginning I was advised by all my medicos to accept all and any help offered. I resolved to take that advice and it has greatly assisted me on my path, though it can still make me uncomfortable sometimes. Nothing like breast cancer for pushing you outside your comfort zone! I found it useful to flip the thinking and realise that if this was happening to one of my friends I would very much want to help.

Good luck with your treatment and let us know how you get on. K xox