27 recently Diagnosed

rella1

Hi Everyone 

I am Sydney based and i have just found out yesterday that i have stage 3 breast cancer ( its a hormonal one ) not sure the rest of the details yet ( or i cant remember at this point) - very shocked and overwhelmed. At the moment i am waiting to do a genetics test and then further bone scans and CT scans before i go into surgery within the next 3-4 weeks. Then after that Chemo and Radiation starts and i will also be taking a tablet which i cant remember what it was. 

As you could imagine the first thing i did was google survival rates and almost had a heart attack when i saw its more aggressive in younger woman and the rates are not high for women under 40. 

I am really looking forward to hearing everyones stories or advice and any words of guidance and wisdom would be highly appreciated

Love to you all 

rella

xo 

ddon

So sorry to see you on here and so young. Don’t google, you are not a statistic. What you have is pretty common unfortunately when you start reading on this forum. Lots of us are in this boat together, with lots of violent rocking from the waves!
 If you haven’t had your surgery yet, it’s completely routine to head off for CT scan and bone scan. I freaked out completely with these, just assuming they meant that the oncologist thought I had metastasis elsewhere and waiting for the results was agony. But in actual fact they do these scans primarily for comparison later. 

These first weeks are so hard to deal with emotionally so be reassured it’s totally normal to be a churning mess inside but holding it together for everyone around you. Once you have a plan worked out then it gets calmer. 

My advice is don’t google. Ever. Ask your oncologist, call the breast cancer helpline, ask your breast care nurse. Be reassured that you have found this now, the treatment is good and everything that comes next is only half as bad as you imagine. I am halfway through chemo, two rounds of surgery down and I mostly feel normal again.
sending you much love and encouragement xx

Sister

Don't trust Dr Google (we've all been there but trust me, it's not worth it - much of it is unreliable, out-of-date, or just plain wrong).  This is one of the hardest times to go through - diagnosis and testing.  Once you have surgery, the pathology report will give clearer information and enable your medical team to plan your treatment with more certainty.  In the meantime, do what you need to to get through.  You can tell all and sundry or you can bunker down - whatever suits you best.  If you can, take someone you trust to appointments as it's always better to have a second pair of ears.  Try to distract your thoughts and just breathe.  You've had a hell of a shock and things are still unknown so be kind to yourself.  There is a young women's private group on here that you will need to request to join if you want to.

rella1

Hi there 
I just wanted to say a big thank you to you both for taking the time to comment on my post with your lovely messages and great advice.
hearing it come from someone who is on their own journey and has been through what i have just became aware of gives me so much hope and strength that everything is going to be ok. 
Thank you both again sending lots of love! 

rella
xo 

Tinks

I’m sorry you have had this terrible shock. This is such a hard part, straight after diagnosis when the whole world is suddenly turned upside down yet there are so many things yet to understand and know about. I really agree with @sister, that if you can, have somebody else with you in your early consultations. Also when you go for your various tests and scans.

When I saw the surgeon first time,  I was lucky enough to have my daughter and my partner with me and they remembered a lot more than I did. 

You have come to the right place here on this forum, the contributors are truly amazing, in their care and support and willingness to be online day at night. You can ask anything, nothing that you could think of to ask is wrong. Lots of love xx

rella1

Hi @Tinks
Thank you for your message
I am so grateful for this forum and being able to speak on here and relate to so many women! its empowering! 
Sending hugs to you and love
xox 

kmakm

@youngdogmum

youngdogmum

@rella1 good morning... 
Sucks you’ve joined us. I was diagnosed last February at 27 so I’ve gone through everything you’re about to. 

If you have a search for the thread “27 year old lobular carcinoma” that’s my experience.... I’ve also written a big thread on fertility preservation.

We tend to still do chemo for us very young patients even being hormone positive, so something to start thinking about is fertility preservation if you thought you might want kids one day. As you’ll see in my posts on here, choosing to do egg harvest was the hardest decision for me. But I’m glad I’ve done it now, even though I don’t think I’ll ever use them, I have them as an option. 

My other advice is to ask for a plastic surgery opinion about reconstruction, you should ideally get an appointment pretty much immediately so you can consider your options in conjunction with surgery for the cancer. Delayed reconstruction is possible, which is what I chose and I don’t regret my decision, but if I had a tissue expander placed at diagnosis/mastectomy it may have made options a bit easier for me now. 

Radiation and implants make things tricky and have higher rates of failure so it’s important to have these discussions. 

Of course if you don’t care about going flat or if your mass is small enough for lumpectomy then you don’t need to consider this. 

I actually know of another girl who was diagnosed aged 27 last week through a friend of a friend. Perhaps I could see if she wants a virtual friend to go through treatment with, it really helped me I had two girlfriends under 30 all having treatment at the same time... 

rella1

Hi @youngdogmum
Thank you so much for your message and reaching out 
Thank you also for the advice regarding egg preservation and plastic surgery 
I really appreciate it
I would love to get to know your friend who is going through a similar experience it is nice to speak to someone through this all who can understand and relate

Many thanks 
xox 

youngdogmum

@rella1 I’ve just sent her a message on insta so I’ll wait to hear back .. I don’t know her personally but a friend connected us because we’re in the same area, both nurses and same age at diagnosis 🤷🏻‍♀️ It’s spooky sometimes how it all happens. 

Whilst I agree with don’t google I think there’s certain things you can google. Such as breast reconstruction options and fertility preservation... it will help you understand the lingo when you have these appointments. Do you know if you are having mastectomy or lumpectomy yet? Public vs private? I only ask this bcoz I used to work in Sydney as a nurse and just know a little bit about the systems which might help. 

It’s really easy to feel very isolated and the waiting room stares from older women and men were honestly awful and I found myself resenting everyone in the room. And it’s so statistically unlikely to get it this young that you can feel like the whole world is against you. But once you see there are other youngens like me etc you begin to realise you didn’t do anything wrong to get BC. It just happened. 

You sound like you’re managing it quite well. I hope your scans are clear 🙏🙏🙏

rella1

Hi @youngdogmum
So i have had a lumpectomy so far and they removed 3 lymph-nodes - this showed 2 out of the 3 were positive and that it is stage 3 of bc. Now they want me to do a genetics test, bone scan and ct scan - then he wants to do surgery again because they noticed a few spots on the outer tissue to remove that. Once i do the genetics test depending on if it comes back with that BC gene or not will determine if it s worth me removing the entire left breast or just more tissue. I am doing it through the public system.
thanks again 
xox 

Caz1

Hi @rella1 so sorry you’re here lovely, thinking of you x

Dory65

Hi rella1 ,
Great advice in previous comments. I just want to add my best wishes. I went through the public system and I have been very well cared for. xxx

Michele B

Hi @rella1, also just reaching out to give you a virtual hug. Best wishes for your treatment xx

kmakm

Hi @rella1. I think having someone going through treatment at the same time as you is an excellent idea.

There are several organisations around for young women with BC. If you're a joiner in-er that could be lovely. If you're on Insta check out @cancerchicksau.

Sending you a big warm hug, K xox

eightdays

Hi @rella1 - just wanted to say I'm thinking of you. Breast cancer research and treatment has come in leaps and bounds and continues to at such a rapid rate, it is well funded and we know so much more about BC than unfortunately we do about many other cancers. We are so lucky, even compared to 5-10 years ago! I know you probably don't feel lucky at the mo, but let others care for you, stay away from Google (you'll always find horrifying stuff there, even if you look up ingrown toe nail), hook up with others your age going through this, and be kind to you. Best wishes, hugs and good luck. xx