Predisposed to familial breast cancer

[Ms_Miss]

Hello For the last year I have begun regular screening for breast cancer. My mum passed when i was 6 of breast cancer and her sister also has it. Two of their first cousins died of it too. The doctors say I have up to an 85% chance of getting cancer. I do not personally know anyone else in my situation. I have been offered a double mastectomy but don`t know whether to have it or not. I can not be tested for the BRCA1 or BRCA2 genes as they need mums DNA to test for it. It is a strange predicament. Having the screening ( MRI, Mammograms and ultrasound) is great, but then the wait is terrible at times. I am a positive person and will remain so. I hope that someone may read this and know someone like me and could direct them to my blog, it would be comforting to discuss this with someone who truly understands. Thank you if you have taken the time to read this Miss Lane

[Mrs_Elton]

Hi Miss Lane, Welcome. I am sorry to hear of the loss of your mother. I am relatively knew to this site too. I am not in your situtation, my husband has cancer and I am using this site to help me connect with others who have had cancer touch their lives. My sister-in-law is at greater risk than 'normal' for developing breast cancer, she has the BRCA2 gene and is booked to have a double mastecomy/reconstruction (using her stomach to form her new breasts) in December this year. I am making her aware of this site as I thought she might find it useful, if she decides it is, I will let her know you may be someone she can connect with. Take care, Mrs Elton

[Ms_Miss]

Dear Mrs Elton I am sorry to hear about your husband and hope he will be okay. Thank you for your reply, I am stunned to have one so soon. I`m sure that your sister in-law`s operation will be successful. If she does want a chat that would be wonderful, but I also recognise the private nature of this situation and so would not be offended if she did not wish to. Thank you for your kind words, Miss Lane

[Mrs_Elton]

Hi Miss Lane, I saw that you were online, so thought it would be a good time to reply. I know that it takes courage to put up your first 'post', so well done and keep them coming! Take care, I'm sure you will find this site very useful. Mrs Elton

[Barbe]

Hiya Miss Lane I have had breastcancer twice in the same breast in the last 7 years. Both cancers were completely different and primary cancers. My oncologist suggested i should be tested for BRCA1 and 2 genes, because both cancers were quite aggressive, the 2nd one being triple negative. I am not sure why you say your mothers DNA is needed to be tested - my family lives overseas and only mine was tested. I do not carry the BRCA1 nor BRCA2 genes. However, i might be carrying a gene that has not been discovered yet, that makes me pre disposed to breastcancer. The good news is, with me not being a carrier of these genes, it makes me less at risk to get ovarian cancer. Something less to worry about i guess. I took the test because i wanted to know if i carry both genes for my sister and mother's sake, and for my daughters sake. I had a lumpectomy, the first time and had a mastectomy when i discovered the second lump. Like mrs Eltons sister-in -law, i had a reconstruction with skin from my tummy, immediately after my mastectomy. A year later, i decided to have a prophylactic mastectomy and had a reconstruction with an implant. I can understand that it is a hard decision to make, I can only tell you what mine was. I had the prophylactic mastectomy for peace of mind, there was no cancer in that breast - and I felt like i took control of a situation that was out of my hands for a while. I am back at work full time and back at the gym 6 months later, I am fit and healthy and i feel that I have made the right decision for me. You have to weigh up what is best for you. Happy to have a chat to you whenever you want. Good luck, Take care Luv Barbe xo

[Ms_Miss]

Hey Barbe Thanks for sharing that info with me, you are awesome! I am now confused about the testing thing too. I will have to follow it up with the clinic. They asked me to get my auntie to donate blood for testing against, but she did not do it. They said all they could offer me was the prophylactic double mastectomy, or regular screening. I wonder why this information is so different between physicians? I am so happy for your good health after such a difficult time. Cheers Miss Lane

[jodielee12]

Dear Miss Lane i just want to let you know that i am thinking of you at this time and the decision you are about to make. My sister had invasive breast cancer at 27, the breast was removed and reconstructed. at aged 52, cancer (Grade 1 Ductal Carcinoma in Situ)was picked up in a regular mammogram in her other breast, so she decided not to mess around and have it removed and reconstructed. she is very happy with the decision she made and she said she would not change a thing. she said she does not live in fear anymore. back in August I was diagnosed with grade 1 Ductal Carcinoma in Situ. The piece was removed and I am now half way through my Radiation Treatment. I sometimes wonder if the right decision was made but i trusted my Doctors to lead me in the right way. i have asked myself 'is there a reason why I developed the same sort of cancer'. it will always be on my mind i guess. chin up and take care Jodielee12

[Ms_Miss]

Dear Jodielee12 Thank you so much for your thoughts. i am very humbled at hearing everyones stories. I wish you the very best in your treatment. I am wondering when you say ' is there a reason why I developed the same sort of cancer' do you mean is it familial? At times I believe that I am in good hands at the breast clinic and that the screening process is adequate. However, I wonder if I just had the operation I would not have to worry. I feel terrible that I do not have cancer, and yet, all you wonderful people going through treatment are so supportive. There are only 2000 women in Australia in my situation and I have never had the chance to talk. I thank you from the bottom of my heart Miss Lane

[#9]

Hi Miss Lane, my name is Bella and I am Mrs Eltons sister in law. I have a sister who was diagnosd with Breast cancer ( aggresive) a few years ago. She started her battle to beat the cancer and was successfull. It did involve her having a double mastectomy and restructions. Unfortunatley the cancer has spread and is now in her blood stream and liver . She had a another round of chemo which they thought worked well to control the cancer, however only last week she was told it is growing again and needs to start antoher lot of different chemo. Our family has a strong history of breast cancer, I have lost an Aunty and grandmother to the disease. Also my mother has had it and survived. My sister had the genetic testing done which showed she is carrier of the BRCA 2 mutation. This testing is then offered to family members . So my brother and I have been tested and have come up positve for the BRCA 2. My understanding is that you need to be tested against a living relative that has had or has the disease if you do not have the disease yourself. Since my sister was diagonsed a few years back she suggested that I start more thorough screening so my doctor sent me to the Perth Breast clinic at the Mount Hospital where I see Dr Louise Allan ( 9483 4621) . I go to see her once a year where she gives me referrals for my mamogram, ultrsounds, MRI and ovaries screen. I found it very useful going to Dr Allen as she is very knowledgeable about the disease and the options available. I was quite happy to be doing that whilst I was still having my family. Once I had my last child in Sept 2007 my husband and I started the process of investigating my options . Genetic services at King Edward were very helpful with the counselling sessions inregards to my options. Dr Louise Allen was great as well. I went to see my sisters surgeon to discuss it with her.She referred me to a plastic surgeon to dicuss my options. I have even gone along to a photo gallery they have RPH Breat clinic where you can have a look at before and after shoots. My husband and I decided in the end we did not want to have this in the back of our minds for the rest of our lives . We decided it is not a risk worth taking . I can do the screening which is good but it does not prevent me from getting the disease . There is no way in the world I want to miss out on seeing my children grow into adults and share all the wonderful things in life with them . The other thing I had to take on board is that my sister has asked me to do all I can to avoid getting this horrible disease she has. I hope this helps and I will keep you posted on my journey, I am scheduled to have my surgery on the 16th December 2009. Regards Bella

[Ms_Miss]

Hi Bella Thank you so very much for joining up to speak to me. Your personal story is the first time I have ever heard directly from another woman in this situation so it means the world to me at this time. I read a book called ' pretty is what changes' which was both confronting and comforting to me. I change my mind sometimes about which direction to take, it is hard to get good advice as family can be too close as are friends. The doctors "suggest" the operation is the best defense, but I am not even sure I carry the gene, so the operation seems so drastic. On the other hand it eliminates the annual worries of screening and the risks involved in waiting to see if the cancer will ever show up. I am sure you can relate to these thoughts? I am going to speak to an oncologist nurse/counsellor soon to get all the facts I can. I consider how you must be feeling now with having made the decision to have the operation and I send you all my best wishes for the surgery and recovery. I can see you have experienced breast cancer a lot and I hope your sister will be okay. It is a great comfort to have met you ( even online) and I would love to stay in contact with you if that is okay and as you feel up to chatting. I have a daughter and she is my biggest consideration in all this, I too do not want to miss a day with her. Thanking you again kind regards Miss Lane xo P.s. i wonder how old you are? I am 34

[#11]

Hi Miss Lane, I am more than happy to keep in touch with you during my journey. I am 37 years of age and have 3 children 2 boys 7 and 4 and 1 girl who is 2. Just to bring you up to speed I have already meet with my plastic surgeon twice , he has sent me off to have a CT angiogram of my abdomen last week this is so they can check the anatomy of the blood vessels in my tummy and chest. I am off to meet with my general surgeon ( Dianna Hastrich ) next week just to finalise last bits and pieces with her. One thing I did find that helped was visting the RPH Breast Clinic as they have a photo gallery there of before and after shots and also the breast nurse counsellors are very informative. I also read a book called accepting with grace which is by Sharon Tregoning who is similar to you she was unable to have genetic testing however due to her strong family history choose to have her breast removed. Have a look at her website www.breastangels.org . You can purchase the book through this website. I will try my hardest to keep you posted of my journey . Take Care Bella xox

[jodielee12]

Hi Miss Lane yes i do wonder if my sisters cancer and my cancer is familial or not. they tested my sister and the answer was no, so i am still unsure if i should be checked out. (i do worry about my daughter tho). its all very strange to me, as when i was diagnosed (Oct), my older sister (who has both breasts off due to cancer) was diagnosed with bladder cancer and my middle sister had a Grade 1 squarmous cell carcinoma cut from her leg all within that month. i guess if i keep asking questions i might get some answers. cheers and take care Linda