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?

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

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

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

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

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. <3

Newly diagnosed at age 34 | BCNA Online Network

Debza
Member
9 years ago
Ro10 I hear you,we all do and I too had identical diagnosis.I am 20 yrs older but my mum was also diagnosed young 39.Had gene tests not carrying gene.
I have just finished chemo half way then Radio and tabs for yrs.
I also felt shatter e d when my shoulder length hair(red) was falling out.Lots of groovy ways to wear a scarce and look great,shaved was empowering,as it as inevitable to come out so just got on with it.As some girls have mentioned different sites are in all capital cities.there's a free wig service in Melbourne and Think Pink offer different courses and in rural areas too.Breacan Cancer Council etc.Please don't despair it's only temporary and a process.Let's us now how things are going.Remember knowledge is power,take your time ,breathe and feel supported.debza
melclarity
Member
9 years ago
@Ne - No I had rads, lumpectomy and tamoxifen, I had DCIS so Chemo wasnt mentioned at all or necessary, treatment I had was aggressive for DCIS, my Surgeon is one of the elite in Melbourne and my recurrence left him gobsmacked!

@Ro10 - Yes I think you are similar to me though Im 48yo, I have a cousin who had bowel cancer, 2 grandads prostate, my Mum Breast Cancer and an Aunt with Pancreatic. Thats it. I think you'd probs be negative too! There have been some ladies on here who tested positive though no family history so it is interesting. I agree you are sooo young!! I started mammos at 38 and glad as well twice now uuugh. Funny you qualified but I didnt mine cost $800 and no rebates private or otherwise. Strange! and yes your Surgeon can fast track it, I think its worth doing as same as you, I knew if positive double mastectomy and ovaries removed. Now I know Im negative, I will only choose a single mastectomy and thats it!!

So keep talking, maybe a 2nd opinion on your diagnosis even if youre undecided.
Ro10
Member
9 years ago
I don't have a family history of prostate or ovarian cancer. My surgeon was saying that colon cancer can be in this group aswell. My dad was diagnosed with bowel cancer 5 years ago but is now cancer free after only needing surgery. He got some genetic testing done for bowel cancer and it came back negative. He thinks I would probably test negative for the BRCA gene as I am only the third person in our family with BC and he thinks maybe more people in our family would have had BC for there to be a genetic mutation. But who knows, maybe I do have it. I have already discussed the possibility of a double mastectomy with my surgeon if I do test positive for the gene and we have also talked about removing my ovaries aswell. And apparently I qualify for free testing due to my family history but there is a 6 month wait so I could fast track it through the private system and pay $400. Aarg! So much to think about at 34 years old. I must say, I never thought I would be facing this so young!
Ne
Member
9 years ago
@melclarity Hi Mel, If you dont mind me asking, so with your first diagnosis did you not have chemo then?
melclarity
Member
9 years ago
Ok, so based on your diagnosis being Grade 2, Stage 1, Chemo is definitely not a given, so there are other factors as you say, I'm thinking the Her2- has something to do with it also in terms of treatment. The gene test cost me $800 because I didnt have a strong enough history! Ridiculous but have had BC twice!!!! So I think it would be worthwhile for you to do absolutely moving forward in terms of knowing treatment. I'd get your Surgeon to do an urgent referral thats what mine did, though took months to get in here in Melbourne. I had granddads on both sides with Prostate cancer and I didnt qualify Scorpion Queen. uuugh

I also felt the same way about Chemo as you do!! I can say, I dont believe anything will happen to you at all, like everything there are risks! I was so against it, but I did it in the end and am 9 months post chemo...whilst very hard and I was so ill through it, I dont question If I could have done more you know? and I got through it!!!

My lymph nodes were clear, so as you say because there was something detected in yours is another reason they suggest. Its a tough decision and only one you can make as to what sits with you, hugs Melinda xo
Ne
Member
9 years ago
Wow, that is a big decision to have to make. I was 39 when diagnosed with 3 tumors (biggest one 3cm) hormone positive, Her2 negative. No family history but my onc kept saying that with diagnosis at such a young age, they always recommend gene testing. I had a mastectomy cause two lymph nodes were involved. Turned out I was BRCA2 positive so decided to have a prophylactic hysterectomy and mastectomy of remaining breast. I can never tell you what to do, but you are young and you want the best possible chance of survival. In my case If I wasn't offered a mastectomy I would have demanded one because I didn't ever want to have to deal with bc again ever and being so young with such an aggresive cancer as mine, I just wanted to my 120% sure I was doing everything possible to add to my chance of survival. All the best with your treatment and the decision you make. We are all here to support you as best we can x
SoldierCrab
Member
9 years ago
Ro10 do you have a family history of prostate cancer in either side of the family it can be from the same gene..... ? if you do then you should be eligible for it under medicare
Ro10
Member
9 years ago
My tumour was only 11mm and was a IDC, ER+, PGR+, HER2-. It's a grade 2, stage 1B. I had a lumpectomy and 2 nodes removed, one of which had micrometastases. I have been told I should have 6 months of chemo, 6 weeks of radiation and 10 years of tamoxifen. They are only suggesting chemo as there were early signs of cancer in one of the lymph nodes and they can't rule out the possibility that it has spread. I think also given my young age (34) they think chemo gives me a better chance of survival. I am looking at genetic testing aswell. Apparently there is a 6 month wait for genetic testing through the public system on the Sunshine Coast QLD so I am going to go private which is about $400 and a 3 week wait. My mum had BC at 34 and her sister had it at 65 but there is no other family history and no sign of BC on my dads side (my dads mum lived to 100 with no major health problems so I hope I've inherited some of her genes!)
I think the thing I am most nervous about is the serious life threatening side effects from chemo. I know they aren't common but to be honest, I'm absolutely terrified about doing chemo and that something bad is going to happen. It probably sounds totally irrational but I can't seem to shake that feeling. I am otherwise healthy and have no other health issues and don't take any other medication so I'm hoping that will count in my favour!
melclarity
Member
9 years ago
Hi There,

There are so many factors that decide Chemo or not, so your diagnosis is paramount, as in ER+ Her-or+, also whether you had DCIS or IDC and what stage and grade it was? also family history. When I was diagnosed 2011 with DCIS, I only had my Mum diagnosed same age at 40 thats it. My Surgeon still ordered very aggressive treatment, which was lumpectomy, radiation and tamoxifen for 5yrs, BUT I had a recurrence inspite of all that in my scar tissue and inspite of being checked yearly, in that time I had a Stage 2 Grade 3 aggressive IDC Breast Cancer ER+ only. The Oncologists rule of thumb he said was he suggests chemo when a tumor is Grade 3. But there are the other factors. Unfortunately I had to have another major lumpectomy, lymph nodes removed which were clear and 4.5 months of chemo and now on Arimidex. They also made me do the Gene Testing eventhough it was unlikely to be positive due to recurrence there was a chance. Thankfully negative, but am wondering if you should be having that??? and even through all this, The 2 Genetic Doctors I saw this week and Breast Surgeon and Oncologist ALL now want a mastectomy rather than gamble with another recurrence. Though thats just it isnt it?? a gamble?? because I dont know if it will or wont come back and thats the tough part.

So I urge you to look at your full diagnosis which will give you more of an indication of where you are and how to proceed.
Hugs
Melinda xo
iserbrown
Member
9 years ago

Hi I noticed your comment about the 2%. My Oncologist had offered Chemo with only 3%. I asked what else was on offer and we settled on monthly Zoladex injections for 2 years and tamoxifen tablets daily for 10 years. You need to ask and understand your alternatives before deciding if Chemo is correct for you.
Good luck and take care xx