Is this a new heading? Anyone else out there fall into this category?(ie no cancer)

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Lark
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Postby Lark » Tue Jun 26, 2007 8:14 am

Ally the altered genes that can cause breast cancer are equally likely to be passed down through either men or women in a family. I don't know what your situation is, but in reference to your father's sisters, it could have been chance that both your father's sisters had breast cancer (ie the cancers were not caused by an inherited breast cancer gene), or they could both have been carrying a breast cancer gene inherited from one of their parents. If (big if) they were both carrying a breast cancer gene then there's a one in two chance that your father also inherited the gene from that same parent, and a one in four chance that you've inherited the gene from your grandparent who was carrying the gene.
There are links to good reading on the topic on this webpage
http://cancergen.com/breastgeneticsreading/

Karyn said "I have got pictures of mum with hair, without hair, oncologist reports, photos of mum having her lungs drained of fluid - they may not be pretty pictures, but i want my children and grand children to know about the diseases/uncommon deaths in our family before i die."
Innovative approach :idea: - and did raise a smile as I imagined this whole new field of photography developing - taking pictures of our rellies in various states of disrepair. "Smile - it's for the family album". :wink:

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Postby Ann » Mon Jun 25, 2007 6:14 pm

Hi girls,
I agree - since I've been dx I've tried to find out about any bc on either side of the family, but none so far. There are plenty of other cancers though. My dad died of cancer of the lymph glands. My mum had a brain tumour, but she actually died suddenly from a heart attack. All her family have had heart and artery problems.
I've been contacted by a family member who is distantly related, because she is organising a family reunion for next year. I asked her about bc in any of her immediate family but she doesn't know of any.
I have 2 daughters and 1 grand adughter, so I'll just make sure they are as well informed as possible. I've already told them to mention my bc to their doctor if they develop any lumps and to insist on tests no matter what the doctor says (too young, see what develops etc.) just keep insisting!
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Postby karyng » Mon Jun 25, 2007 12:31 am

Hi girls

just reading the posts and have to agree - try and get information out of your parents/guardians before it is too late.

My dad has been tracing our family tree, and when mum died, he lost interest. I have since picked it up (and it is now 3 volumes some of the information going back to the late 1600's), but because i was here when mum was first diagnosed, i have put pictures and a biography of her (i did the same with every other relative). I have got pictures of mum with hair, without hair, oncologist reports, photos of mum having her lungs drained of fluid - they may not be pretty pictures, but i want my children and grand children to know about the diseases/uncommon deaths in our family before i die.

k
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Postby jezza » Sun Jun 24, 2007 7:28 pm

I have it on both sides!

jezza

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Postby sedgymum » Sun Jun 24, 2007 7:24 pm

Ally,

I went to a meeting on familial cancers and when having genetic testing they look at both sides of the family, not just the maternal side.

Cheers Kelly
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Postby outbackgirl » Sun Jun 24, 2007 6:39 pm

Does anyone know if BC is passed down from the Paternal side. My father's two sisters had it and noone on my mother's side.

I think I read somewhere that it was just passed from the maternal side.

Ally

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Postby jaybee » Thu Jun 21, 2007 11:26 am

Thats a fair call Chris, but in my case my mum died in'73 and not everything is on data base like it is now, I had a struggle to find out alot about my mum's BC. Her Dr was deceased and medical clinic had changed hands and reports no longer existed. I was lucky enough under the Freedom of Information Act I was able to get the last 10 days hospital records about my mum dying but not initial diagnosis. To make it worse my father had died 11 months before my dx and my mums sisters said "oh no it was just something we did not discuss as it was too personal. Go figure, I was out on a limb and nowhere to go and no-one to ask.

Fortunately or unfortunately my mum sisters both got dx with BC and both dx's were different to mine (theirs hormonal mine not) and cousin got dx with non hormonal as well. Since my dx I have got every bit of info there is about me, so that in future if any of my siblings, descendants,nieces etc get dx at least there is info there. We are all so different in our journeys :hugs:

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Postby chris » Thu Jun 21, 2007 2:17 am

It is true that Dr's own the pt's records but most modern practicianers are happy to supply copies to other professionals or give the patient a comprehensive run down on their history, gone are the days of secrecy but not at the expence of pt privacy. to know ones family history wouldnt it be easy just to ask? In the case of parents dying while children are young or orphaned but there is usually someone in the family who can give a history. Chris (sorry about the typos it's late)

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Postby jayem » Wed Jun 20, 2007 9:49 pm

I used to work for a doctor. We were legally obliged to keep records for seven years only in the case of an adult but for any child under 18 we had to keep their records permanently for some reason.

As for who owns the records, the doctor does. Some patients think that because the records are about them then the records belong to them, but this is not actually the case. Of course, any doctor who has the best interests of their patients will pass on any pertinent information.
Jan

Dx 20 Sept 2006, 2 cm IDC + DCIS, 1/16+ node, ER+, PR+, HER2-, 4 AC, 4 Taxol, 33 rads
CFEM Trial 5 years Arimidex, 5 year SOLE trial Femara
Dx Aug 2016 neuroendocrine cancer in pancreas, mets to liver, abdominal nodes, hip, skull, scalp and breast.

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jezza
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Postby jezza » Wed Jun 20, 2007 9:43 pm

BTW abcd...thanks for bringing this up. It is probably something we should all be doing....getting a family history before it is too late. How many of us older posters have detailed records of their parent's medical histories?

jezza

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Postby jezza » Wed Jun 20, 2007 9:39 pm

This is an interesting thread. My father died of cancer. We were told it was in his shoulder. My mother never questioned anything. Of course now it is pretty obvious it was a secondary.

Years later my sister and I made an app. to see his GP to find out his history. We had children of our own by then and thought it was important. His GP(elderly) hadn't kept his records...probably legally didn't have to and really couldn't help us. So now we will never know and are unable to pass any of this on to help our children.

jezza

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Postby jaybee » Wed Jun 20, 2007 7:39 pm

As Jayem has said if you are a close relative and from previous questions that you have asked, I can only begin to understand your frustration. Not knowing the answers and moreso not knowing what exactly to ask would be difficult, more so not wanting to offend or bring up things out of awkwardness.
When I went thru BC I also had a social worker, maybe your reli might have had one and you could get some answers from there i(not about patient but need to no questions for your own medical need) if not they could do so on your behalf. Good luck abcd hope that this may help :hugs:

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Postby jayem » Wed Jun 20, 2007 7:20 pm

I am presuming you are a relative and so by law you do not have access to anyone else's medical records - there are privacy laws brought in over the last few years.

The person who has been treated for bc can get copies of all pathology from their physicians.

I understand your reluctance to keep talking to them about bc but if you explain why you want the information, ie to fill out your own records, you are not just sticky beaking and they would probably be happy to assist you. Good luck.
Jan

Dx 20 Sept 2006, 2 cm IDC + DCIS, 1/16+ node, ER+, PR+, HER2-, 4 AC, 4 Taxol, 33 rads
CFEM Trial 5 years Arimidex, 5 year SOLE trial Femara
Dx Aug 2016 neuroendocrine cancer in pancreas, mets to liver, abdominal nodes, hip, skull, scalp and breast.

abcd
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Is this a new heading? Anyone else out there fall into this category?(ie no cancer)

Postby abcd » Wed Jun 20, 2007 2:36 pm

Just wondering, how do you approach asking for medical information (if you ask at all) which would help your own medical file (so your own gp is more informed)? My family is kind of 'over it' if you know what I mean, understandably those who have had bc don't want to always be asked about it or identified by it. But by the same token I can really only tell my gp age of diagnosis and hormone positive or negative......i don't know stuff about size of tumor, number of nodes checked or stage. Has anyone ever asked for this stuff? and if so, has it only been after your own diagnosis or did you ask for it beforehand? how did you go about it.


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