Diagnosed yesterday...

cathr

Hi.  I'm Cath, I'm 45 & yesterday I was diagnosed with Triple Negative, Invasive 5.6cm tumour, Grade 3. Less than two weeks ago I was rubbing Vicks on my chest for a persistent cough and found a huge lump - what a fortnight!

Life was just settling into a calmer rhythm than it has been for many years after moving into our new house in April with my precious daughters who are 7 & 10yrs old & our gorgeous lab Roxy. We left our family home in August 2015 due to domestic violence and lived in temporary accommodation during the sale of our house & divorce settlement. I'm gutted that this diagnosis has rocked the joy of our new safe place.

In 2009 whilst pregnant with my 2nd daughter I was diagnosed with vulval cancer (Extramammary Paget's Disease of the Vulva). I had a partial vulvectomy in 2009 & with a recurrence in 2010 had further surgery. Each surgery put me out of action for 3 months. My 1st surgery was when my daughter was 10 weeks, the second she was 14mths old. I feel I've had my fair share of life dramas and this is just too much!

I'm fortunate that my Mum is able to come and live with us while I undergo surgery & treatments to help keep the ship afloat. I have a really great group of supportive friends but none that have received a cancer diagnosis. I've explained the whole situation to my girls & it helps that my mum had a mastectomy 21 years ago for DCIS so my girls are used to the look of a single breast and prosthetic.

I have an appointment with my surgeon on Friday morning to find out the plan for the coming months.

Do you have any tips for a newbie? Questions I should ask at the surgeon on Friday?

Many thanks,

Cath x

 

Autore

Hi Cath and welcome to the group.
Sorry to hear of your diagnosis, my heart goes out to you. I'm glad to hear your mother is there for you and has moved in to help.

I too was triple negative w 3 aggressive tumors (and the BRCA gene). Finished chemo a few months ago and am in the midst of surgery.

Have they mentioned BRCA gene testing?

One thing about triple negative is it's very responsive to chemo drugs and they are continually updating and improving these drugs.

There's so much information to absorb in the beginning it can be daunting! Make sure you keep a big diary with calendar and notes section (for Q&A). Also, don't feel like you have to rush into something if it doesn't feel right. You can always get a second opinion.

Wishing best of luck for Friday. Let us know how you go . Sending hugs xo

jd48

Hi Cath, Welcome to the 'club' even tbough I am sorry for the reason that forced you to join us. And I am really glad that you have been able to udentify the tumor at such an early stage as at 5.6mm it is tiny and there is a very good chance they will need not do anything too invasive surgery wise.

This is a good place to be when dealing with Breast Cancer as everyone here is in rhebsamenboat and I have the forums here invaluable source od information as I navigated BC waters (I was diagnosed in Feb and still undergoing active treatment).

This part here, where you have a diganosis, but no surgery or biopsy results yet is the absolute pits and the most frustrating and nerve wrecking. 

As Autore suggested definitely ask for the Gene testing. Some are.for it, some are against it as they fear increased insurance premiums... I believe it is one thing that will help you make more informed decision when it comes to surgery and treatment and you want your girls to have a much better understansing of their family history so that as they grow up they can make the right decision about their future.

As your mum has been through this do take her along to your appointment with the surgeon. Start now to write down all questions you have regardless of big or small or even silly they may seem and make sure to take that with you to the appointment so they all get answered. Do not be affraid to ask "why do you think that is the right thing for me?" or something along the similar lines as it helps to have them explain why or why not they deem particular course of treatment is being reccomended.

If there just that single small tumor there is a good chance they will only do a lumpectomy and sentinal node removal which have quick recovery and no huge impact on your health longer term. As Autore mentioned there are many tailored Chemo regimes these days and once the surgery is behind you, the invasive bugger is out they will have biopsy results and the proper diagnosis and from there they can design the most benefitial treatment for you.

Ask the surgeon to put you in contact with the local Breast Care Nurse. They are 100% invaluable as they will help you understand exactly what is ahead of you, they will help you get ready to go home post surgery with advice on bow to look after yourself in terms of recovery, they will help you understand your diagnosis better and will be involved in your treatment from start to finish. If you ask they can even attend your appointments with you if you feel you need their support. Honestly, if there is 1 thing I would say is the most benefitial thing you can do right now it is to get in touch with your breast care nurse.

If you have not done so already, order the My Journey Kit from this site. It has some invaluable formation. And more than anything, as stresfull as it is right now, try to rest up and gather your strength and soend time with your friends any do everything and anytning that both helps you relax, cheers you up and helps you gain physical strength as you want to be at your best for when this process starts.

And as hard as it seems right now remember that there have been so many advancements in the treatment of BC lately that as scary as it is to get the diagnosis it need not be all doom and gloom. You will get through this and will have great medical teams looking after you getting you the best possible outcome.

Hugs

Jel.

cathr

Thanks for your reply Autore. During my research online it has been reassuring to read that triple negative is so responsive to chemo. 

I'm off to get a diary - great idea - and I'll ask about BRCA thank you! 

I'll be back to update you on Friday.

Cheers, Cath x

cathr

Hi Jel, thanks for your reply. Oops, I typed mm instead of cm! I've now changed it in my post. 

I ordered the Kit yesterday - it looks like a great resource. 

I'll be adding contacting the Nurse to my questions for Friday - thank you.

I have a few fun catchups with friends planned for this weekend & I'm looking forward to lots of laughs! 

Thank you very much for all your suggestions.

Cheers, 

Cath x

Christel

Hi Cath,

i was diagnosed in Feb 2016 with stage 3 Triple negative.

Some tips:

A portacath is fantastic and saves your veins, ask for one before you start chemo

there are some really good resources for helping children through this journey, a book called what is happening to my Mummy, Kemo Shark (which explains chemo and what it does for us) I liked reading these books better than the adult literature as it was less overwhelming in the initial diagnosis. There is a few more, cancer council and McGrath foundation sent me most of these.

Mummys Wish, is a great organisation that helps us with young children. You will need a referral, but they have provided resources for our 6, now 7 year old, a cleaner to help when I was not at my best, and a teddy bear for our daughter for me to record a message on in case I had to go into hospital.

I let my then 6 year old daughter shave my head to a number 1 as I noticed I was loosing hair, she enjoyed it and felt included.

i told school what was happening and we have a very open and honest communication with our daughter, she is doing great and is openly discussing at school with the teachers and they help her on days I might be struggling by giving positive reinforcement that to get better I might get a little sick first, and lots of cuddles! School also cooked us dinner for the week after I had surgery which was fantastic and very unexpected.

everyone is different, keep the focus on you journey, yours will be different to your Mums, read up but don't take everything as being how you will be, I was not text book during AC chemo, had it fairly good, but paclitaxel I am finding very taxing.

Things I have gone through a lot of: Sustagen or protein powder, lemonade icy poles, Bundaberg ginger beer (diet has more ginger content), lemon and ginger tea, ginger lollies.

things I have to combat boredom/focussing on cancer: books (read over 500 so far!), puzzles (too boring for me), cross stitch (ok but need to have a time when I can concentrate).

hope this helps in some way. Feel free to send me a private message if you have any specific questions and I will do my best. I'm not sure where you are located but even if your girls have questions I'm sure  my 7 year old would attempt to answer them, she wants to be a breast care nurse when she grows up (or a singer!).

xx

christel

 

jd48

Hi Cath, just wanted to see how you are doing as I believe you had an appointment last week.

I hope you have more clarity now on what is planned for the next few months.

I hope all is well

Hugs

Jel

SoldierCrab

Hi Cath, how are things going for you now? I want to encourage you I am 4 years since diagnosis of TNBC and I am doing really well. Happy to chat if you need to  I left DV back in 1999 so I understand that also.
hugs and energy your way...