Not Diagnosed yet

Thank you joeyliz and I am happy that you are having your last chemo..I am a public patient. Does this mean that I have to go on a wait list?  I confident I am making the right choice regardless of test results. It is still scarey but I want the risk to me gone rather than wait to see. If I get a bad test result we will be shocked I quess but at least I know i will receive great treatment at the royal...How long ago were you dignosised if thats ok to ask? And did you have many symptoms at the beginning?  Please let me know if I am asking to much...Cheers nuce to talk to someone in Hobart. 

Hi there, I am in Hobart too and having my last chemo next wed. Waiting for the results can be torture but it sounds like you have discussed everything with your husband which is good. Hopefully you get a benign result on Tues, but if you feel it’s worth talking to the genetic councillor due to family history please do. I saw 1 at the Royal and she was lovely. If you do get the unfortunate malignant result then rest assure that Hobart has world class treatment and you will get looked after in both public or private setting. Best wishes feel free to ask as many questions as you like. X

Thank you primek I am definitely going to see a spealist. This is the second time I have been through this. Waiting for biopsy results its not nice.  I am not taking this lightly and if you could see me my breasts are so small due to alot of weight loss you wont even know tgey are gone. The difference this time around is the radiography specialist mentioned the C word thry have never done that before. 3 samples taken from one lump not sure if that makes a difference. So due to family history and the slight increase in my risk i don't want to wait for what may or may not happen. I am 50 and my husband and I have plans for our future now that our 4 children are all grown up. I will be definitely talking to the right people about this. Its my choice I quess but an experts advice will be handy. Thsnk you for listening to me. Cheers 

I had a really strong family history. On my fathers side 3 of his sisters had breast and/or ovarisn cancer and so had many of their daughters and most likely his mother.  On my mothers side my sister (different Dad) had breast cancer and her daughter had breast cancer. I was tested against my father's side known brac1 gene (twice to be sure) and found not to have it. Nor any siblings...so looks like my Father didn't carry it. My sister and her daughter were checked for known genes and none found. Both my sister and I developed cancer around menopause. My niece was much younger.

I did have bilateral mastectomies due to recommendation of surgeon, breast density and family history. However since no gene did not go on to have ovaries and tubes removed. It helps to have all the info. To make the decision at a time not in fear. It is a significant change to your body. They can reconstruct the look of your breast but never the  feel and the surgery can be extenisive depending on what you choose. I recommend a referral to a genetic counsellour regardless of outcome as it really helped me plan my future and detection alternatives etc. 

Thanks everyone yes its hard to wait for results but it will come around quick enough. My husband and I have had a great talk about it all and we have both decided that no matter what the results are I am going to see a spealist about preventative Mastectomy. I have fairly strong family history and going through this every year is so stressful and as my risk is slightly increased we belive this is best fo me. I am not making thus disision lightly we have done nothing but think about it. Our plans for the future is to travel and live on a boat i do not want the continued worry of this. My breast are so small you wont even notice that they are gone. As my husband jokingly says they are not my biggest assest. Happy Easter and I wish you all the best with your journey. I will let you know how Tuesday goes. Cheers and thanks for listening to me.

Everyone else has said what there is to say. Come back to the network whenever you need support, info or a laugh with people who know what you're going through. And best wishes for your appointment.

Hi @Pahill,  not much I can add to what the others have said but I just wanted to wish you all the best for your results on Tuesday.  The waiting is soooo hard.  I have everything crossed that your results are good but if anything needs to be done, you will find so much support, kindness and information here.  We have all been where you are and completely understand how you feel.  You are never alone through this.  Please let us know how you go and enjoy your Easter weekend.  @Pahill

@Pahill Thanks hon. I lost 5kgs before diagnosis and 15 since. Nothing like a health 'scare' to overhaul one's life!

Re genes, I think there are nine genes that have been identified as directly linked to breast cancer. The BRAC1 & 2 are the most common and well known, but still small. For women with breast cancer it's 3% who have it. The other genes are incredibly rare.

In my instance, my breast surgeon put it like this: one person in a family is bad luck, two people is really bad luck and maybe a coincidence, but three people is no coincidence at all, there is something going on.

My sister had the genetic testing done on four of the genes before she died. No new tests have been developed since then, but I had a really good and informative chat with a woman at the Familial Cancer Centre. She sent me a letter which contained this:

"It is unlikely the genetic testing has missed a mutation (fault) in the genes tested, as the analysis is thorough. There is a small possibility you could have a mutation in another high risk gene that we have not tested although such genes are very rare. It is more likely that your personal and/or family history is due to a large combination of genes that each add a small element of cancer risk. This is called a polygenic (many gene) pattern of inheritance. Research is still trying to identify what these other genes are and how to test for them."

I hope this helps. Take care. K

Thank you onemargie you have helped alot as have everyone. They took 3 samples from one of my lumps. The other just one as tgat actually popped i qyess you could say the doctor doing it said that one was a cyst. The other not so lucky yes waiting is hard. I have done nothing but think about what to do either way. I will enjoy the next few days wuth my family and try focus on that for niw. Thanks again. 

Hi there @Pahill.  I was diagnosed may 2016 with triple negative breast cancer stage 2a grade 3 left boob tumor was initially found “3 o’clock left breast”  aged 43 I had yearly. mammograms since aged 40 as I had itty bitty titties too (14b) and lumpy cysty boobs. In jan 2015 I had a mammogram and had a biopsy on the left boob and it came back benign but it came back as “a fibroadenanoma 3 o’clock left breast”.

It also said I could go 2 yearly. So the tumor was found hiding behind the fibroadenonoma and I never felt any difference from the previous year. It was my hubbys insistence that I had that mammogram in April 2016. And thank god he did.   In hindsight I found out dense breasts can increase your risk as can a fibroadenoma even though it’s benign. I asked to take it out but was told it was harmless so I didn’t. 

I didn’t have any family history and I was negative for the gene. My scans were all clear and I had no lymph node involvement. I had 8 rounds of chemo and took the left boob off so I only had to have chemo and not radiation as well then took the other boob off after my chemo as a preventative. No regrets from me at all I was told it wasn’t medically necessary to have the mastectomies but my strong gut instinct told me to do it. And like I said I’m so glad I did 

plenty of other lovelies will tell you their story and many have kept their boobs or just taken one off or both off like me. I have a 21 year old daughter and she is at increased risk but not high risk as I was negative for the gene so she will start her scans sooner rather than later. 

If all your results come back ok but you still feel like you’ve dodged a bullet And want to get a double mastectomy as a preventative as that’s what your guts is telling you to do then trust that instinct but before you make that decision make sure you get all the advice you can as it’s a big decision to make and you have to do what you feel is best for you love. Please let us know how you go Tuesday. And try not to stress too much until then. I know thats  easier said then done but your results may very well come back negative too. Also no weight loss for me love Hope this helps Biggest hug. Margie xx