Newly diagnosed at age 34

Ro10

Hi everyone, just felt like I needed to share my story in a supportive forum with like minded people.

I was diagnosed with breast cancer on 23rd August after a routine ultrasound - I have a family history of breast cancer so had been getting routine ultrasounds. My mother was also diagnosed with breast cancer at 34 years old and passed away one year later so I was terrified when I found out I also have this terrible disease at the same age as my mum. I was completely consumed with fear and anxiety for the first few weeks. I couldn't function or think straight and was convinced I would be dead in a year! I just couldn't imagine my little girl growing up without a mum and I don't want her to have the life I had. People told me just to be positive and everything would be OK. I just wanted to scream at them "I've got breast cancer and I'm terrified, I don't feel like being positive right now!" Slowly I started to accept what was happening and come to the realisation that although I have a massive battle ahead of me, there's a pretty good chance I'm not going to die! 

I had a lumpectomy and 2 nodes removed 2 weeks ago and I will be starting chemo in the next few weeks. My surgeon has said if I do chemo, radiation and hormone therapy, I have about a 95% chance of survival which made me feel a bit better about things. However, I can't help but feel extremely anxious about starting chemo, especially facing the fact that I will probably lose my hair. It seems so vain but I feel like it will be a constant reminder every time I look in the mirror. 

Does anyone one have any advice on ways to deal with side effects from chemo and maybe some good places to buy head scarfs?

melclarity

Hey there!!

I am so sorry to hear your story! It's just so wrong on so many levels this disease! It is terrorfying and I dont think our families and friends get the degree of it. Like you I was in the system in my 30's as my Mum had breast cancer at 40, she had a mastectomy and survived 26 years cancer free!! She passed 7yrs ago. I had my first diagnosis 43, Lumpectomy, radiation and tamoxifen for 4yrs. I had a recurrence in 2015 in my scar uuugh and had another lumpectomy, chemo and now on Arimidex. I actually wore wigs though had head scarves I just never felt right in them. Shinyway Wigs in Melbourne, it was synthetic but my hairdresser cut it to the style I always wore, it was so hard to tell! I didnt worry when I was home, just when I went out. Of course its hard losing your hair but wonderful when it grows back in. 

With the Chemo, make sure you communicate constantly with your Team, rinse your mouth daily with salt water to stop ulcers. If you get reflux ask for Nexium its the best there is. I was allergic to Maxolon anti nausea, so I found Ativan helped me. Just make sure you stay on top of all your meds and get plenty of rest and drink lots of water if you can. The staff are wonderful, and any concerns will help immediately. Oh and I used Panadol Osteo and Nurofen together when I needed it as I was so drug sensitive I couldnt take anything stronger. 

Step at a time, dont think too far ahead, like you it was hard both my journeys without my Mum with me...but I absolutely know you will get through it, you'll find a strength you never knew you had and you will put it behind you.

Big hugs! Melinda xo

rowdy

Welcome to the site I read this and I think of my daughter who is a little bit younger than you. Life can be so tough, treatment has improved over the last few years. Yes it is terrible to lose your hair. When mine started to fall out I was devastated, but once I had it all cut off I adjusted quickly with no hair. I found losing my hair was less of a issue than the chemo. I had a wig as I worked on and off during chemo but wore scarves alot. I used a skull cap on my head and brought cheap scarves and watched a video on the internet on how to tie them.
Chemo is tough but you will get there, visit often there is generally someone who can help. Sending you a hug xx

socoda

Hi Ro10, Welcome!! I cannot imagine the fear you must have felt upon your diagnosis. Just thought I would pop on to wish you all the best, and just to say treatment regimes have progressed a lot over the last two decades and 95% chance of survival -  those are pretty good odds!! I reckon I'd bet on those!! Take care Xx Cath

SoldierCrab

hi Ro10 this is a horrible journey none of us wish to be on.... Do you have a breast care nurse they can point you to the nearest Wig Library where often you get borrow wigs while going through treatment also ask about the Look good Feel Good program it is a great program where they teach you how to use makeup etc to minimize the hair loss ie eyebrows  etc  Ask where you are booked in for Chemo if they have a Wig library and when the next Look good Feel Good program will run. 
I agree with the others over the years the survival rates are a lot higher now and the choices for chemos have increased. this will not remove your fears but rest assured I was diagnosed back in sept 2012 told only 80% chance of survival 5years later.... I am now 4 years out and cancer free....  Please feel free to come and vent cry laugh and ask advice from us here on the forum. we will happily give you our suggestions of things that worked for us. 
hugs and energy 
Soldier Crab 

Brenda5

Oh Ro, don't be too fearful, cancer treatment has come a long way even just in the last few years. Even nasty liver cancer I had a friend who had quite good quality of life for another ten years and his kids made it to adulthood. Every day new things are happening and while the current bc treatments still seem kind of barbaric with surgery, chemo etc, it is saving lives. Hang in there girl.

primek

http://www.hathouse.com.au/
http://www.hatshow.com.au/index.php?route=common/allproducts

These 2 sites sell great headgear. I started with one of the starter packs and went from there.  You will find a sleep cap very helpful as your head can get tealky cold at night and it collects all tbe little bits of hair that shed a bit later. As well as a couple of coloured cotton or bamboo hats...as the scarves can get annoying some days. I wore beanies all through winter but just too hot for summer. I hated my wig but have seen them on others that look amazing. Kmart was the best for cotton scarves (under $10) and cheap as chips. I have loads and quite enjoyed them in the end. I had my eyebrows cosmetically tatooed also so didn't need to bother to draw them in. We all understand the dread of losing your hair.

Hoping your journey goes smoothly and know that we live in a country with the best survival rates in the world. All of us start our journey with the very real fear that we might die from this disease. As the the chemo starts...eventually you start to believe that you will beat it.  Chemo is hard...but it gives most of us the best odds of being in that 95% if we have it. Take care. Kath x

Ro10

Thanks to everyone for their lovely comments. It's nice to know that there are like minded people on this site that actually understand what we are going through. My family are all in NZ but my husbands family lives close by and they have been very supportive but don't really understand the emotions I am feeling. Thanks primek for your website recommendations. I was actually looking at the Hat House website last night thinking I could find some nice things there. I have my first appointment with my oncologist on Wed 5th Oct so I will know more about my treatment after that and can ask more questions. I think they have breast care nurses there too so hopefully they will be able to help me along the way. 

NaomiV

Hi @Ro10, it's a shock in the beginning! And I'm with you, it drives me CRAZY when people tell me to be positive - it's quite possibly the worst thing people can say although I didn't understand that until I started on this journey. It's like, how about you let me decide my emotions because it's about the only thing I have control over at the moment!!

I'm only 36 with two little ones, so I understand your fears about the future. My breast care nurses ran a 'Young Women's Breast Cancer Workshop' that went for 4 weeks, and I got to know a few other ladies around my age in various stages of treatment and I found this immensely comforting. We've kept in touch and it's really nice to be able to talk to other ladies over a coffee without having to actually explain every symptom or emotion - they just get it. So if you think you might find this helpful keep an eye out for something like that in your area? Your breast care nurse might be able to point you in the right direction.

I was really worried about losing my hair too, and was convinced I'd never take my wig off so no-one would know - I lost my hair over a month ago and I think I've worn my wig about 7 times, I've realised I'm actually quite comfortable with it, and in fact my kids love it. Again, it helped me a lot meeting other ladies who were going through the same thing - we compared bald heads, laughed at ourselves and it made it feel a lot more 'normal'.

Sending you lots of positive vibes, it's a tough journey for sure, but you'll be amazed at the strength you can find. Good luck next Wednesday xx

Ann-Marie

@Ro10 To help you find some information on side effects just click on chemo & side effect . These links will take you to all the tagged conversations on the online network. You could also try searching for these key words. Let me know if you need any help. Ann-Marie 

InkPetal

Hello

I have a family history too and had to nag a doctor to even get taken seriously enough to have an ultrasound. Amazing how differently doctors behave. I lost my mother as well, but she lived with it for six years.

I had the same fears. This is it, the clock has started ticking, if there is anything I wanted to accomplish with my life I had to do them now. I'm still thinking that way, and having life halted by chemo side-effects really impacted me psychologically.

We talk about that a lot here, precisely how we all feel about people telling us to keep our "chin up" or how we'll "be fine" and "stay positive". Get In The Sea. It's cancer not a head-cold you condescending trivializing burrito of a person. Right? There's a lot of value to it, it's just people trying to be supportive the only way they know how- their letting you know that they are there for you. It doesn't feel any better but we have to remember that the intentions are pure.

I have taken the chemo radio hormone route too.
This still feels insane to talk about, but I won't sugarcoat chemotherapy. There were days I felt like it was killing me, but people three times our age can get through it. You can do this too.

I'm a little late for a radiotherapy appointment so I have to run, but will be back to talk more about how I managed a lot of my side-effects.

Lispy

Hi, I'm about your age with 4 young children, so I know where you're coming from! 

I shaved my head just before starting chemo....and liked it! Kind of felt empowering. My hair follicles were sensitive when it started to fall out for about a week.

i now look like my profile pic with only 2 more chemo sessions to go so I never lost *all* my hair - still also have eyebrows (thinner) and a couple of lashes!

unless I'm expecting to see children I'm usually bald headed, I don't like the feel of stuff on my bare head. After having shoulder length hair I'm really surprised at how little losing my hair bothered me considering how bummed I was thinking about it.

primek

I'm  glad you liked the links and hope you can find something suitable to wear. It feels good to have something beforehand.

Ro10

Thanks for all your replies.
@InkPetal, I know what you mean about getting doctors to take you seriously about the family history. The GP I was seeing when I fell pregnant with my daughter told me not to worry about the family history of breast cancer cos I was so young and actually said to me "I survived breast cancer so you'll be fine"! She basically refused to give me a referral for an ultrasound because she thought I was overreacting about the family history. I'm so glad I changed GP's when I got pregnant or they never would have picked up my tumour so early. My surgeon and a cardiologist I saw were absolutely disgusted with this GP's attitude towards it and actually want me to put a complaint in!

Tingy

Hi Ro10,
I was diagnosed in early April this year, had lumpectomy and currently half way through 6 months of chemo (finished 4 cycles of AC, today just had the 1st cycle of peclitaxol), then radiotherapy for 5.5 weeks and hormone therapy.  It is OK and normal to be terrified and yes, those people telling you "everything will be OK and stay positive" are actually not helpful at all, but they probably don't know what else to say.  Just think that their heart is in the right places.

I have 2 girls aged 3 years and 11 months.  So the most terrifying thing for me is not seeing my girls grow up.  Yes there is a huge battle ahead but I tell myself think of the long term goal - being here to see my girls grow up - then any discomforts a long the way is worth it, truly.  I thought I'd be really sad about loosing my hair, but when the time comes to cut it off (because I was just malting so much I was leaving a hair trail and I got fed up with it), I didn't even care!  I bought a synthetic wig (from Wig Affair) but most days I'm just happy to wear beanie/badandas because it is comfortable and practical (the girls are so grabby).  I know hair loss is temporary and mine has already started to grow back!

For me, to ease any worries or fears about your breast cancer, your medical team (breast surgeon, oncologist and radio oncologist) would be the best people to ask because they have the most intimate knowledge of YOUR breast cancer.  For anything related to chemo, obviously the oncologist would be the one to go to.  I found the chemo nurses are also excellent in knowing the side effects and how to manage them as they hear patients' feedback all the time while the patients are receiving chemo treatments.  Everyone's reactions to the chemo drugs is different so just be mindful and aware of yours, and talk to your oncologist if you have any questions or concerns.

InkPetal

Ro10 said: "I survived breast cancer so you'll be fine"! She basically refused to give me a referral for an ultrasound because she thought I was overreacting about the family history.

WOW. That is NOT okay. wow. I'm so glad you switched doctors. That's - ridiculous!