Newly diagnosed at 31
Sumi
Member Posts: 6
Hi all lovely ladies,
i was diagnosed last with invasive ductal carcinoma triple positive. I have absolutely no family history of breast cancer. I am totally lost and do not know where to start. My doctor suggests total mastectomy and flap reconstruction followed by chemo. Please share your experiences of similar diagnosis as mine and your treatment process. Many thanks xo
i was diagnosed last with invasive ductal carcinoma triple positive. I have absolutely no family history of breast cancer. I am totally lost and do not know where to start. My doctor suggests total mastectomy and flap reconstruction followed by chemo. Please share your experiences of similar diagnosis as mine and your treatment process. Many thanks xo
0
Comments
-
I am 31 married and no children.0
-
HI @Sumi - welcome to this forum. You'll find it a great place to come to for support - there's virtually someone online day and night whether you're after advice or just want to vent or scream - there's someone here that will always lend an ear and know exactly what you're going through.
I was diagnosed with bilateral invasive lobular carcinoma and had a double mastectomy in April. I'm now going through chemo treatment and will then have radiation. I was 100% ER & PR positive so will also have years of hormone treatment.
I don't have any family history of Breast Cancer either.
It's so overwhelming at the beginning and there's so much information and different opinions out there, that knowing where to start can be absolutely daunting.
It's absolutely vital that you're comfortable, and have faith in your medical team. I went along to all my appointments armed with questions and by the time I had my surgery, I was 100% confident that what I was doing was the right thing for me. It makes a huge difference when you feel informed and ready. If you think that you'll be overwhelmed by the information that you'll get at your appointments, take someone with you who can help you go over it all and make sure you take it all in, or record the conversation on your phone and take notes so that you can go over it all later. You'll have a surgical oncologist, a plastic surgeon and a medical oncologist on your team as a minimum - spend as much time as you need to with each of them and make sure that you leave the appointments with all your questions answered.
I was unable to have an immediate reconstruction because I knew from the start that radiation was going to play a role in my treatment. Radiation is a major factor in reconstruction success. I have air expanders, and will either have an exchange to implants or a DIEP flap sometime next year - 6-12 months after radiation.
Taking one step at a time is really challenging. Waiting for a treatment plan, scan results and surgery dates is hardest part but it's really worthwhile to take as much time as possible to get all your ducks in a row! Once you have a path ahead of you, you'll feel much more in control.
Wishing you all the best with everything! xxxx4 -
Hi Sumi. I'm sorry that you find yourself here, but welcome.
When you're ready you might like to join both the Young Women's group and Choosing Breast Reconstruction group. The latter has photo stories of many different reconstructions which I found incredibly helpful when contemplating my options.
Might I suggest that you ask for access to a breastcare nurse. Most of them are an excellent starting point when we're first diagnosed. They usually know of good counsellors if you need to 'talk it out'.
Do you have the My Journey kit from the BCNA? That's a brilliant place to start. The learning curve is vertical eh? Right now you could call the BCNA helpline, 1800 500 258. The lovely ladies there will talk it through with you and you'll come away with a better grip on things.
It's an insane shocking whirlwind at the beginning. I promise you it gets better as you make your decisions and your trratment plan takes shape. So take a deep breath, and unless you have specifically been told otherwise, you don't have to rush into action straight away. It's very important to be comfortable with your decisions.
I trust your doctor has spoken to you about your fertility options.
Hang in there Sumi. Take some deep breaths. Seriously! It settles our nervous system. We are all here for you, hit us up with all the questions. This place is a superb hive mind. Big, big hug, K xox
http://onlinenetwork.bcna.org.au/group/10-young-women
http://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction
6 -
@Sumi sorry you have to join us here but you are in the right place for support and advice. Im 43, no children, no family history of breast cancer and was diagnosed with IDC at the end of January this year after a lumpectomy ER & PR + and HER2 -. Had breast sparing surgery and then mastectomy and auxillary node removal in February, margins clear, nodes clear and CT scan clear. Saw an oncologist who said no radiation, hormone therapy for about 10 years and chemo was my choice. She advised this because I am considered young and so it could prevent the risk of recurrence. I decided to go ahead with chemo so I would have no regrets and I finished about 3 weeks ago - its already feeling like something that happened to someone else. Do you have good friends/family support? I advise taking someone to your early appointments as it is a lot to take in and get something to organise all you paperwork and results in. Sending you the hugest hugs xoxoxo3
-
Hi @Sumi
Welcome. The lovely ladies have already given you some good advice as usual. The beginning is the absolute worst. So many questions and so much waiting around for results. So much confusion. I remember it well.
As @kmakm has suggested, a breast care nurse is a wealth of knowledge and support for you the whole way through. You will feel a little more in control when the plan starts to come together. Hard to believe at the moment. I know.
I had a combination cocktail of DCIS and IDC. Highly ER + PR positive but HER2 -..
I was pretty adamant about choosing a lumpectomy if at all possible so we chased a very illusive breast tumour for a month to find it. I already knew it was in the nodes from the start so full auxiliary clearance as well. Followed by chemo due to the node involvement and 30 rounds of radiation.
Keep talking on here and asking questions. Everyone on here gets it and are only too happy to help. One day at a time lovely.
xoxoxoxo2 -
Thank you everyone for showering me with support and all the information I received from you are too precious.
I have very supportive and loving husband who’s more worried than i am. I don’t want to look weak and want to make him strong too but can’t hold the outburst at times.
I hope I will be able to fight this battle as you all have been fighting but am still processing the information in my head and yet to make decisions. I will be around bombarding you all again with questions.
More power and love to you all ❤️4 -
My husband and I have become closer through this, with a better understanding of each other (after 19 years of marriage!). My advice would be to just be open and honest with each other. Supressing feelings isn't really sustainable or useful! You've gotta let them out to get through this.
The My Jouney kit has a pamphlet for partners. I got my husband to read it a couple of times. There's some very useful advice in there. K xox0 -
Hi @Sumi - I am so sorry to see you here - but, we have travelled the road before you & as the lovely ladies above have given so much terrific info - there is very little more to be added.
Just know that you have all our support & hope that you don't have a bumpy ride!
Re hospital - I suggest that everyone take a good pair of ear plugs with them as well as eye goggles (like they give you on airplanes for long flights), as they are incredibly noisey places & have the lights on 24/7! These are REALLY GOOD ear plugs (you can get them at chemists or hardware shops) - just squash them to a 'pencil size' & shove them in your ears ..... they expand to take the shape of your inner ear - and cut out MOST noises. If alarms or anything go off or anyone talks to you - you still hear them!
A small pillow (sort of long & narrow - or curved ....) can also help to support your arm/shoulder as you recover ..... and make sure you keep up your pain meds for the first week at least.
Whilst it is good to be 'in control' of your condition - if you are feeling vulnerable or upset, let your husband know - there is nothing like a hug for giving you support. There may be times when something may 'set you off' into an emotional wreck for a short period ... No-one knows what the trigger is until it happens. Just be aware that it can happen (and has happened to most of us.)
If you have ANY questions, please don't hesitate - ask away! We are here to help support you and your husband .... and help you avoid any speed bumps xx
It is a roller coast emotional ride - there is no history of any cancer in my family either.
All the best - thinking of you xx1 -
Hi Sumi, I'm going to be a little bit cheeky, and copy & paste @SoldierCrab's list of useful links and hints regarding navigating the site, and your situation.
Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet.
It can be a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time.
Navigating the online community formerly the what and how thread.
Breast Care Nurses
https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx
My Journey Kits and other resources.
https://www.bcna.org.au/resources/
BCNA Helpline 1800 500 258
If you have any questions, concerns or require any further information or support please call 1800 500 258. BCNA’s helpline will now be open from 9am-6pm Monday to Thursday and 9am to 5pm Fridays.
How to understand your pathology reports
Hope you find it helpful
Take care
2 -
Hi there @Sumi. You’ve had such awesome advice so far from the crew on here. There is also a young pink sisters support group I think they are based in Melbourne but they have a heap of great stuff on there website to help you too. (Just google them) There is also a young women’s group on this forum you can join too if you’d like. You can only just take each day as it comes.
Try not to google anything. It’s the worse place to get any advice sometimes and can make you feel more anxious. You won’t know too much until all your pathology comes back after your surgery then you will get a plan of attack and can then get your head around your treatment from there.
Biggest hug. Margie. Xx1 -
@Eastmum @kmakm @Kiwi Angel @kezmusc @Riki_BCNA @arpie @lrb_03 @onemargie
I wanted to mention all you wonderful ladies and say huge huge thank you. All the information and stories you shared mean a lot to me to get started on this long journey. I may not be posting here a lot because of my circumstances but it doesn’t mean i am gone. I have been exploring the community and trying to grasp as much as i can.
I still have some tests due today and will meet my doctor on Thursday. Hopefully we’ll have a treatment plan ready for me on that day. Pretty scared0 -
@Sumi it’s completely normal to be scared - we have all been there. Good luck for today and Thursday and let us know how u get on xo0
-
Yeah @Kiwi Angel
I am freaking out to be honest. Having outbursts every other hour thinking of things that are coming my way. But have to be strong and have to go through all of it as you all have been doing.
I will be updating here.
0 -
@Sumi just remember u don’t always have to be strong. It’s a lot to take in and an emotional and physical roller coaster xoxoox1
