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Family History and Illness

ProfilePosted byOptionsPost Date

Unknown

Unknown Report 12 Dec 2003 08:39

A friend of mine was told that she would not be able to have a gene test for breast cancer eventhough her mother had it. It seems that their family is made up of a lot of female members and the oldest female child has either had or died from breast cancer. Her mothers cousin died this year after it came back for a 3rd time and still the hospital will not give her the test. They were more concerned that her grandfather and his older sister had died from esophagial cancer. It is a nightmare for her as any pain in the chest area and she is frantic with worry. She is fully aware of the implications of having the test but as she says, "at least I'd know". Lily

Elisabeth

Elisabeth Report 12 Dec 2003 07:59

Suzanne, Please contact me again if you need any help with the Newark area - I did give you a little information on a Lunn I knew - Bett or Betsy. Elisabeth

Suzanne

Suzanne Report 12 Dec 2003 07:52

Dear All Many many thanks for all the info. I will pass all info to my father. Jaqui I will set the video again, although there was a peice about this same thing on the later news at 10. Also thanks for looking for Lunns, I have been to the Newark library once!! and I am hoping to go again during the Christmas holidays. Once again many thanks to you all, hopefully this will help the surviving family. Suzanne

Jacqui

Jacqui Report 11 Dec 2003 20:33

Hi Suzanne - just an update on the tv programme. Apparently there wasnt time enough tonight for the piece (due to the conclusion of a major trial in Nottingham) so it will be on Friday lunchtime and again at 6.30 pm East Midlands Today. What a lot of interesting information your topic stimulated. Fascinating stuff; My friends twin girls both developed breast cancer after becoming pregnant. One only discovered hers after giving birth, and the other poor girl has had several miscarriages prior to her operations, chemo and radiotherapy. Thought she was clear, then became pregnant and 3 months into the pregnancy the cancer reappeared. Managed to get baby to 7 months, then delivered and is now into more chemotherapy. Baby is doing fine and hopefully this very agressive chemo will do the trick. I'll have a scout around for the Lunns in Newark pre 1930 and see what I might find out. Jacqui

Janet

Janet Report 11 Dec 2003 18:48

Kathryn Thanks for including the warning. These financial etc matters do need to be taken into consideration, especially for younger people with life assurance and mortgages to consider. A genetic counsellor would always draw these points to the attention of anyone considering genetic testing. I am currently awaiting the result of my BRCA1 gene test. My mother died of breast cancer 26 years ago today and my sister has also had breast cancer. As part of my family tree research, with the help of some people on this site, I 'found' my grandmother - who died before I was born. We didn't know her name or what she'd died of before. Have discovered that Elsie died of ovarian cancer - which can be caused by the same gene as breast cancer so I decided to go for the gene test. Good luck to anyone in a similar position. Janet

Twinkle

Twinkle Report 11 Dec 2003 18:35

YES - this is the reason I started my research. I was also taking A Level Biology at the time so I understood the basic genetic principles. My g/grandfather died of cancer, and of his eight children, five died of cancer. Gene tests are only available for breast cancer (the gene also causes ovarian cancer) and bowel cancer. First of all, the hospital will need to do a gene test on someone who has actually got cancer/had cancer (so that they can identify the gene). You family tree research will tell them how many members of the family have had cancer (and what specific cancer), how old they were, whether their children later got it etc etc. With this info they can decide which family members to test for the defective gene. There will be a genetic counseller to explain everything to you.The chance of inheriting the gene is 50/50. With my g/grandfather's kids, they believe 4 inherited and 4 did not, with the fifth cancer death being 'one of those things' because it was the wrong type of cancer. If you decide to have the test the results can take over a year to come back. For a start, remember that having the gene for cancer does not mean you will get it. It means you can change your diet and excercise pattern now. Or you can have surgery to remove whatever organ could possibly be effected. THIS IS IMPORTANT: I often see people screaming that DNA should be taken from people and put on a database. Clearly these are ignorant of the real-life situation. As far as most businesses or organisations are concerned, if this test comes back positive you are already dead. You will never be able to get a mortgage or a loan. If you already have one, don't ask to borrow more money or extend repayments because it may not happen. Health or life insurance companies won't touch you with a barge pole. Employers won't be happy about hiring someone who may be on long-term sick leave in 5 years' time. A positive result means your kids have a 50/50 chance of inheriting it, so consider the above before they rush out to be tested on their 18th birthday. Of course, if the test is negative (as in my mother's case) you can live a long and worry-free life. Good luck.

Jane

Jane Report 11 Dec 2003 18:10

Hi Suzanne, The same things happened in my family too. Mum and my sister Gill both died within 6 months of each other from stomach cancer and breast cancer. One other sister was diagnosed with it in 2001, she went into remission but unfortunately it's back again. I've had to have 2 breast lumps removed and now a niece has a breast lump. The niece has been asked to go to Leeds Hospital for genetic testing and had to fill in a form stating which if any family members died from or have been diagnosed with cancer. It seems that quite a few of mums relatives died from cancer and if i had'nt started doing the family tree we would never have known cos mum did'nt know her parents (long story).

Suzanne

Suzanne Report 11 Dec 2003 15:36

Many thanks for the info, I have instructed hubby to set the video. The area of Nottinghamshire that I am interested in is primarily Newark as my father's family only moved away with his father in the 1930's, before that all were in Newark. The name I am researching is Lunn. Once again many thanks for the info. Suzanne

Jacqui

Jacqui Report 11 Dec 2003 14:55

Hi Suzanne - not much to tell you really, except that I have a friend who has had bowel cancer (first diagnosed at aged 21)- her mother also had this (and regrettably died when my friend was only 12). Apparently my friend's aunts and cousins have all had bowel cancer (and some have died) and my friend's consultant has regularly screened her twin daughters since they were 14 for the gene. Fortunately neither girl has apparently inherited that gene, but both twins (now in their 30's) have had breast cancer (and one is now being treated for the 2nd time). It would seem that genetic screening is becoming more and more common, and what a marvellous thing this is. I presume that the more death certificates you are able to obtain, then the more information you will be able to pass to the medics on the cause of death of your ancestors. However, I do think that years ago people died from diseases that were not readily identified, and the cause of death of the certs might be slight ambiguous. I note you are looking in the Notts area - what names are you searching for? I live in Notts and would be happy to look for you if I can help. By the way, if you do live in our area my friends's daughter is on Midlands Today at 6.30 pm tonight - she has been filmed about just this very subjet - the genetic link and breast cancer. Jacqui

Suzanne

Suzanne Report 11 Dec 2003 14:36

Finally I have some encouragement from family, before now they would just murmur encouraging noises when I would be excited about another find! The reason you ask? My father is one of 12 (he is the youngest), 9 boys, 2 girls (one died in infancy) two of his older brothers have both died from cancer, another has been given the all clear from cancer and a fourth has just been diagnosed with cancer. The reason for the posting is that now the hospital want information of my family research, they think there may be a cancer gene in the family and would like to know how many others have died of cancer. Has anyone else come into across with this? Also, not knowing any of my fathers cousins etc (I have had no luck in finding any others with the family name in the same area of Nottinghamshire that are alive!!) I would appreciate any help/tips etc. Many thanks.