So very scared

Thinking of you. Sounds like you're doing wonderful healing work xx

Hi MishBnLyss,

My mum was diagnosed with TNBC last year and the lymph node involvement really freaked us out, too! The fantastic news is that in my mum's case, the lymph nodes and the tumours responded REALLY well to chemo, to the point where when she had a mastectomy and lymph node clearance, only four nodes were positive! Radiotherapy worked really well, too. I know how frightening this is, and all the uncertainty is overwhelming, but take it one step at a time. Chew the elephant slowly, as they say!

I found it really helpful to go into the onc with Mum armed with a page full of questions. (I always found my mind blanked when I was actually in there!) I also Googled good questions to ask and just included the ones that would be useful for us.

I'm thinking of you and if you ever want to chat, you know where to find me!

x

I had my chemo in Albany which was great - no disruption to family life at all. I could've had radio in Bunbury but opted for Perth.

In regards to genetic testing, I cant remember if it was my oncologist or breast care nurse who asked if I wanted it done. They said I qualified for free testing due to my age and the fact it was TNBC. There was no drama at all and it was a simple case of extra blood being taken when I had my regular blood test the day before chemo. The results can take up to 4 months to come through (oncologist cant understand why it takes so long) and I'm not expecting it to resolve much. I have done it so if it is positive I will have double mastecomy to help reduce the obvious incresed risk of BC again and then my children, sisters and parents can also be tested for free if my result is positive. Only thing that is annoying is you get a Yes you have the gene or maybe you have the gene! There is no definate NO.

I had a lumpectomy before I started chemo. Both oncologist and Breast Care nurse have siad they dont believe mastecomy will be advantagous to me except to reduce my own worries about local recurrence. They would've still recommended radio as mastecomy doesn't remove all breast tissue and that due to my clear surgical margin and no lymph node involvement, a lumpectomy was all that was required for success. I am happy with that decision but I guess like a lot of women in my situation, I'll kick myself if I have a local recurrence that isn't found in time and I could've prevented it with a mastecomy. I have been told that blood tests and mamograms will detect any recurrence early but I dont want early detection - I just dont want it back!!

Hopefully I have helped - I get paranoid about rambling on.Hopefully you get some answers you are looking for from your oncologist. I must say, down here I've always had straight up, honest answers and info right from the getgo which has been great.

If we dont talk again, good luck with your treatment, all the best to you and your family.

Hi Vicki,

Did you have your chemo in Bunbury? How did you go about getting the genetic testing? I heard that it was going to take a year and that it has to go before a panel. That part is all still confusing to me.

Are you having a lumpectomy? It would be ideal if the tumor kept shrinking and that could be an option for me but I think because it started off so big it is not an option. 

I am in Albany! I think you are only the 2nd person I have seen on this site remotely close to whereI live. I am public as well - no choice here really and going to Perth for 7 1/2 weeks of radio is bad enough, certainly wasn't going to go up and back all the time for chemo.

9cm - WOW, that's huge. If dark humour is permitted, you get the award for biggest tumour I've heard of. Mine was 3cm, sounds little by comparison. I remember when I found it by complete accident, thinking how the heck did I not notice that before.

I would've thought if you wanted a double mastecomy the choice was yours? Unless my genetic test comes back positive, I think I'll keep mine and try to put all the worries of if it comes back in closet, live my life and see what happens.

As my sister put it, "If your going to get cancer, Breast cancer would be the one you pick!" There is so much money put into research, support etc and survival rates are so high. I am certainly intending on upping those rates by one more.

Hi all,

This is my first time on the network. Happy Easter to everyone.

I am a 42 year old with three children: 8, 7 and 19 months. 

I was breastfeeding when 2 months ago I was told I had mastitis. After a few consults with local GP I got a biopsy and found out that it was malignant. My tumor is 9cm! Can't say that I've found many stories of a tumor that size on the internet. My journey has been rather up and down. First I was told that it was inflammatory, then I was told that it wasn't.  No one discussed with me that I was TN. I had to find out on the internet and brought it to the attention of my oncologist.  The term and its  prognosis were never discussed with me.  I was completely overwhelmed as well.  Here I was trying to get the kids ready for the new school year and my world all of a sudden got turned upside down. How is one to cope witht the news "You have cancer".  Surely this isn't happening to my family and it is all a bad dream.

As the others have posted, it does become somewhat more manageable as time goes on. I have my moments but they are farther apart than when I initially found out. Use all the resources available to you.  We live in the southwest of WA and so your options are more limited than a big city but I have tried to find everything available to me. The Cancer Council, breast care nurses, counselling.

I am having  doxetaxol for the whole 6 treatments. I am half way there. I have been told that I will then have a single mascetomy and 6 weeks of radiation. I would like a double but my surgeon doesn't advise it.  I am also a public patient. I am hoping that with my insistence he might agree as it would be easier for reconstruction etc. Because of the size of my tumor a lumpectomy is not an option unfortunately. I am very nervous about surgery - being a public patient I think my reconstruction could take awhile.

I find the first week after chemo is a struggle but on the whole it is not as bad as I thought. Hopefully the next three will not be worse than the first three.

As for the information on the internet, I only review the good and there is a lot of positive stories out there.  It is so hard to do - but say to yourself every time you look at your children "I am going rid myself of this disease" so that everyone can get on with their lives

Read up on diet - I have cut out all red meat, dairy and most importantly sugar. Exercise when you can. 

Went to the surgeon last week and my tumor is now less than 3cm. I am crossing my fingers every day. I have always been a glass half empty type of person but I am slowly learning that you have to live life with the glass half full. Breathe deep!

Hi all,

This is my first time on the network. Happy Easter to everyone.

I am a 42 year old with three children: 8, 7 and 19 months. 

I was breastfeeding when 2 months ago I was told I had mastitis. After a few consults with local GP I got a biopsy and found out that it was malignant. My tumor is 9cm! Can't say that I've found many stories of a tumor that size on the internet. My journey has been rather up and down. First I was told that it was inflammatory, then I was told that it wasn't.  No one discussed with me that I was TN. I had to find out on the internet and brought it to the attention of my oncologist.  The term and its  prognosis were never discussed with me.  I was completely overwhelmed as well.  Here I was trying to get the kids ready for the new school year and my world all of a sudden got turned upside down. How is one to cope witht the news "You have cancer".  Surely this isn't happening to my family and it is all a bad dream.

As the others have posted, it does become somewhat more manageable as time goes on. I have my moments but they are farther apart than when I initially found out. Use all the resources available to you.  We live in the southwest of WA and so your options are more limited than a big city but I have tried to find everything available to me. The Cancer Council, breast care nurses, counselling.

I am having  doxetaxol for the whole 6 treatments. I am half way there. I have been told that I will then have a single mascetomy and 6 weeks of radiation. I would like a double but my surgeon doesn't advise it.  I am also a public patient. I am hoping that with my insistence he might agree as it would be easier for reconstruction etc. Because of the size of my tumor a lumpectomy is not an option unfortunately. I am very nervous about surgery - being a public patient I think my reconstruction could take awhile.

I find the first week after chemo is a struggle but on the whole it is not as bad as I thought. Hopefully the next three will not be worse than the first three.

As for the information on the internet, I only review the good and there is a lot of positive stories out there.  It is so hard to do - but say to yourself every time you look at your children "I am going rid myself of this disease" so that everyone can get on with their lives

Read up on diet - I have cut out all red meat, dairy and most importantly sugar. Exercise when you can. 

Went to the surgeon last week and my tumor is now less than 3cm. I am crossing my fingers every day. I have always been a glass half empty type of person but I am slowly learning that you have to live life with the glass half full. Breathe deep!

On the home page you will work through the information, but you need to have a "My Journey" Kit sent to you yesterday.  The minute youre scared, phone "The Cancer Council" and when you have a "Breast Care Nurse" phone immediately.  Your head is spinning, and fear is only an emotion, and it goes just as quickly once you have spoken to people who answer your questions.  Always assume you will sail through, and it doesnt happen to you the same way is it does for me.  I am nearly at the end of chemo, and I see you have had 2 children, I recon child birth would be tough!  The only time things got ontop of me in the beginning was sitting at home worrying and not having answers.  Im Triple Negative too, I have just done what my Doctors have told me to do, they went to Uni and I trust them to know.  But my biggest point I need to make is THERE IS ONLY ONE YOU, so never assume all the experiences you read about will happen to you.  Wow, Im 5 months later, and Im ok.  You only need to watch TV and see how many people out there have medical stuff to experience.  You too will have you strong days and your tears.... but we are here, and we are going through it too and this Website means the world to me.  I hope it gives you a light, as it has given me!  XX Bel

On the home page you will work through the information, but you need to have a "My Journey" Kit sent to you yesterday.  The minute youre scared, phone "The Cancer Council" and when you have a "Breast Care Nurse" phone immediately.  Your head is spinning, and fear is only an emotion, and it goes just as quickly once you have spoken to people who answer your questions.  Always assume you will sail through, and it doesnt happen to you the same way is it does for me.  I am nearly at the end of chemo, and I see you have had 2 children, I recon child birth would be tough!  The only time things got ontop of me in the beginning was sitting at home worrying and not having answers.  Im Triple Negative too, I have just done what my Doctors have told me to do, they went to Uni and I trust them to know.  But my biggest point I need to make is THERE IS ONLY ONE YOU, so never assume all the experiences you read about will happen to you.  Wow, Im 5 months later, and Im ok.  You only need to watch TV and see how many people out there have medical stuff to experience.  You too will have you strong days and your tears.... but we are here, and we are going through it too and this Website means the world to me.  I hope it gives you a light, as it has given me!  XX Bel

firstly you are not alone! 

feel free to join this support group for young women on Facebook https://www.facebook.com/groups/youngpinksisters/

chemotherapy is hard as there are so many different types of chemo. 

So my first question would be what type of chemo will you have? & how many? & how often? 

Having 2 young kids i would ask - what days should be your worst- so u can get help with the kids on those days. 

As for Lumpectomy v's Mastectomy. I dont think there is a right or wrong answer. its very personal. there are risks of it coming back unfortunately no matter what you do. Depends on all your factors, I would trust your specialists. 

If you choose to go down the road of mastectomy i would think about having a double (both breasts removed) not just a single. As it makes reconstruction alot easier later down the track. lowers your chances of developing breast cancer again. And is easier to mentally deal with (I Think)