TNBC
hi i placed a blog on the triple neg site so hoping to get a few replies and advice bit stressed at the moment . just me maybe. anyway look foreward to some in put . fran
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Dear You
How couragerous for you to go looking and my golly you have found the right site. Welcome but also such saddness that another pink lady joins the site. You will get so much support from here. It's so hard at first when first diagnosed but within months you will become the person giving others advise. I am not sure what to say but take one day at a time and trust in your self. Rely on your instincts and take control back by questioning everything. Good luck and cyber hugs. I have being doing cancer now for over a year and my battle continues but I am one of the unlucky ones, well not really as I have 5 adult children and 1 grandchild and have lived my life to the fullest so I don't actually feel unlucky.
Sarah54
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i agree sarah. with all you said this site is a god send everyone is a wonderful support
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Hi Fran, You say your diagnosis was 7yrs ago, so I guess you had surgery then. How is everything going ? You say you are stressed and hoping for some input, so I guess you must be having some new problems or continuing problems with your TNBC, or maybe with life apart from BC. Whatever is going on for you, I really hope you have found a good medical team to work with, and that you get all the support you need from us here on the board. Do let us help, let us know what is upsetting and stressing you now if you want to talk about it. and do stay in touch.
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Hi Fran, I did a bit of research into the research to see what there might already be known and be out there, that might be of help to you in this decision.Often people seem to react in a knee-jerk way, esp people who have not had cancer or dealt with it, without knowing what the risks are, what the facts are, what the best choices are, and there are so many scare-mongers who assume bilateral mastectomies prevent all chance of cancer recurrence in all situations. On the other hand when you are scared it feels so important to find a way out of that scared place asap
I found that there was a study reported on last December in Journal of Clinical Oncology "Women with BRCA1 mutations should have preventive ovarian surgery by age 35"
Here is an article about a reportalso Dec 2014 on a small Canadian study that found a double mastectomy gave a 50% reduction in further breast cancer in women with a first breast cancer and abnormal BRCA1 genes.
http://www.breastcancer.org/research-news/20140404
Here is a study (from 2001)in the Journal of the National Cancer Institute of women with BRCA1/2 who had bilateral mastectomies:
http://jnci.oxfordjournals.org/content/93/21/1633.long
I hope these might be useful to send to your GP and oncologist and to discuss with them.
From what I have read, it seems that it is not stupid to choose to simply wait and test and be vigilant, nor is it stupid to choose to have your ovaries, uterus and both breasts removed either. Both appear to be sensible, and valid if scary solutions to a rather scary problem, and both have risks, and I guess ultimately it is a matter of knowing yourself and figuring out what will give you the best quality of life, length of life etc. Also, it is something you can afford to take your time over. If you choose now to wait and see, and then that causes too much anxiety you can then change your mind if you want to.
I belong to 23andMe.com which is a genome project where I got my genome analysed in 2013 . There was a woman there with BRCA1 gene abnormalites who said, "It is really good to know this so I can be careful about cancer while having my babies and breast feeding, and then I will probably go and get ovaries and breasts removed, and I can live with that and do things at my own pace as much as possible"
Be of good heart, you sound like the sort of person who gets the facts and makes good decisions. My thoughts are with you. I hope this research is of help.
Jessica
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Hi and thankyou Jess for all that great work.and interesting .
well saw my specialist surgeon and yes i am definetly having my last ovary and possibly fallopian tubs removed if they were left in after my hyster.i see the gyno oncologist on 1st april so hopefully have that op in may. as to my double mastectomy the surgeon said because my heart isnt that great ( i have a first degree heart block effects the rythmn not actually a blockage ) he was worried that a major op like that if not needed yet would be risky and that by having the ongoing screening mammo's and ultrasounds and 3 monthly checks at doctors would be fine and usually mostly pick up early signs of bc, plus i am over vigilant myself with lumps and bumps and he said if it did recur they would just remove both straight away no questions . so at the moment i am just doing the gyno op . thanks all for the fantastic support . xxxFran
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Hi and thankyou Jess for all that great work.and interesting .
well saw my specialist surgeon and yes i am definetly having my last ovary and possibly fallopian tubs removed if they were left in after my hyster.i see the gyno oncologist on 1st april so hopefully have that op in may. as to my double mastectomy the surgeon said because my heart isnt that great ( i have a first degree heart block effects the rythmn not actually a blockage ) he was worried that a major op like that if not needed yet would be risky and that by having the ongoing screening mammo's and ultrasounds and 3 monthly checks at doctors would be fine and usually mostly pick up early signs of bc, plus i am over vigilant myself with lumps and bumps and he said if it did recur they would just remove both straight away no questions . so at the moment i am just doing the gyno op . thanks all for the fantastic support . xxxFran
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Hi, that sounds like a very sensible well thought-out plan, with your best health in mind, and them behind you 100%. Now the challenge is to be vigilant without living in fear.
All the best
Jessica
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