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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.0
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@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. K1 -
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. @Pahill1
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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.1
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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.2
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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.2 -
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. Cheers0
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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. X0
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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.0
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We are lucky in Hobart there isn’t really a waitlist! I’m public and it has all happened very quickly for me. I was diagnosed 18/09/17 My symptoms were a bruiselike pain in my left breast, 4 days later I felt a lump then a wk later a painful lump in my armpit (I was on holiday overseas at the time so couldn’t get the breast lump checked until 2 wks later). Drs day I arrived home, ultrasound/mammogram/biopsy 2 days later (a Thursday) with Lynne Brothers at Women’s Imaging (highly recommend she’s a straight talker) results following Mon, IVF clinic next day (I’m 31) then started chemo the next month with Louise Nott. Surgery booked for May 18 with Luke Rayner then I’ll have radiation with Marketa Skala in June. There is a “best practice” timeline for everything as well as an “acceptable practice” timeline so even as a public patient they aim for those and rarely cannot make it (although Drs leave and public holidays do impact) I must add I am a radiation therapist at the Royal so do have a little insider knowledge how how it works. Hope that helps and again feel free to ask, we are all here to support each other x2
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Thank you yes Lyn Brothers is great. She was so calming to me. Sge actually mentioned the C word to me. Never heard it before she did say uncertain. So I quess a wait game until Tuesday. I have decided as I said to have them removed either way...it is a scary tome and I can think of nothing else. I am sure i will have more questions. Thank you for your kindness and good luck. I am 50. Cheers0
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Happy Easter Joeyliz I hope you have a wonderful day with your family. Thank you for listening to me and telling me your story. One thing I forgot to mention I went through the same thing two years ago had a FNA they said a yst but wanted it checked. Turned out ok then but this time seems different its on my left side feels hard and firm Lyn last time said nothing about the C word but this time it was mentioned not sure if she says that to everyone. She took 3 samples out there was another one but she said it went drained as it appeared to be a cyst one sample tsken from there. Not sure what to expect on Tuesday but I am going to see a spealist about preventative Mastectomy scared but I am only 50 and dont want to do this again and wait for what coukd happen. Thanks again for your support nice to have someone close to home to chat with. Cheers.1
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@Pahill I was 52 when diagnosed I chose bilateral even although it was in 1 breast only ... never looked back
i am over 5 yrs no evidence of disease.
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So glad its going ok for you Soldiercrab.
I am as you can probably tell quite anxious about it all. Tuesday cant get here quick enough...As i have previously i am so small in that area i do not want to keep going through this my husband and I have spoken alot about this he supports me 100% in having preventative Mastectomy if i get clear results. I am worried as when they took samples out of one of the lumps she said thats a good one a cyst as it apparently disapeared. The other one 3 samples taken and it stayed there. She mentioned before the Biopsy that it could be the C word now i have had a biopsy in the right side a year or so ago none of that was mentioned and tgey took one sample it was a FNA that time. This time its the left side had a Core Needle Biopsy and thats when she said the C word and wished me good luck. I know I may be reading to much into this but i am concerned..Family history is quite significant so thats why i am choosing a preventative Mastectomy if all ok...Hope you dont think I am crazy. Thanks for listening. Cheers1 -
Pahill I dont think you are crazy we all worry about cancer and recurrence for those who have already been through it....
You need to choose what is right for you.
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