HI I am new to this site, I had a mastectomy in December and was given radio therapy only, as I was advised I did not need any other form of treatment, was not happy with my hospital treatment/comments/attitudes of the caring nurses and doctors, so asked for a second opinion. On going to another hospital 9 months later, I was right in my decision as I have now been advised that I still have cancerous cells in me as I had a grade 2 DCI tumour with Her2 3+, so now have to have 4 courses of chemo which I started lately and then a year of herception. To top it off my young daughter now has breast cancer so we are getting our genetics tested. What I would like to find out but will ask the hospital, if found to have the gene, does that mean I would need to have another mastectomy?
You don’t need to have any surgery you don’t want to have. They will probably recommend surgery as the risk of a second cancer is around 50% but that means you have a 50% chance you won’t get a second one too. You can discuss it all when you go for your appointment. Your idea to write a list of questions is a good one.
Good luck
Thanks you for the advise, its is just that it takes so much of your life away, what with having my daughter going through it also and having to look after her children with her it had been a real eye opener.
I will ask all the questions I need to as writing them down is always good as there is so much info to take in.
Regards
Thats very tough you both going through bc at the same time. I got bc first of all a year after mum finished treatment. She was diagnosed at 57 and was shocked cos she considered herself too young to cancer but she was even more gobsmacked when I got it at 37 and again at 40 and now going through it for a third time now aged 43 it has gotten easier each time but I know my mum does really struggle with it. My daughter is 20 and has a 50% chance of carrying the gene mutation I have but it’s made all the more difficult by her having quite complex mental health problems. The interesting thing in our family is mum doesnt have the gene change I inherited it from my dad. Some times these things are just a coincidence.
Hope you have more faith in your new docs good luck and if you need any more advice re gene testing do get back in touch. Xxxx
Hi Lefty, good luck as you embark on the route of genetic screening. However, be prepared for inconclusive results. I have 2 ‘strands’ of cancer in my family (bowel/brain/ovarian and breast). I am over 2 years into genetic testing and, in some ways there are more unknowns than knowns. I do have a BRCA1 Variant but it is “of unknown significance” (VUS) so we do not know if it was responsible for my breast cancer, or any of the other cancers in my family. I’m no further forward in knowing whether I should have a prophylactic mastectomy or whether I’m at high risk of other cancers.
Also as Lulu34 says, you don’t “have” to do anything. The specialists can make recommendations about surgery and treatments for any medical condition but it remains the patient’s right to make an informed decision about whether to go ahead.
By the way, if you do carry a gene variation relating to breast cancer, you have a 50% chance of it having come from your biological mother and a 50% chance of it having come from your biological father irrespective of the fact that it is a causal factor in a disease which affects more women than men. My BRCA1 VUS has been proved to come from my father.
hi skinnyminx and every one else i had a genetics test which also come back vus and now feel in limbo i was told it was up to me what step to take next and have decided to have my overies removed im not having the dm as feel i have been through enough lately may consider this a little later down the road although ive been told they cant say that was related to my cancer they cant say it wasnt i feel this is the right action for me im new at this so hope it reach where it ment to lol good luck to every one still waiting for results eight wks feel like eight years xx
Hi Ladies thanks for all the comments and information, my daughter got tested and the results have come back as her not having the gene, but they are not happy with the results so will be investigating further.
With regards the gene coming from my father I feel that this could be possible, the reason being is that I do not know my dad, yes one of those situations, our parents have a lot to answer for.
Therefore it is hard to find out anything about him and his family, but my daughter and I feel that it is from his side of the family.
Although it has come back negative for her I have not been tested so I think that may be my next route, as I would like to know where I stand, which I feel is a fair request.
I do hope you ladies are ok and life is getting easier for you all, as at the moment it is a struggle as it is affecting my daughter very badly and I am having to look after her as well as my self, but as they say God is good, and only gives you what you can deal with.
xx