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Hello I am new here.

12 REPLIES 12
marial
Member

Re: Hello I am new here.

Dear Kaz,
I don't think I have anything to add as far as information is concerned, Lulu is the real expert, so I am so glad she has replied.
I am writing just to let you know you are not alone and there are plenty of ladies here who can "hold your hand" when you need. Of course your husband cannot understand how you feel, as dancing girl said he is a man and will cope in his way, which may not be very helpful to you during this difficult time.
My sister died of bc a long time ago, before genetic testing was available for anyone. However her daughter wanted to be tested, so I was tested first, having had bc in my left breast in 2003 and then in my right in 2010. They found the BRCA 1 mutation, and then they found she had it too, so she has the knowledge that she will be very closely monitored all her life. Her brother did not inherit the gene., it is a 50-50 chance, as we all have 2 biological parents.
I am fine now, having been back at work full time for 18 months, but I still pop into the forums from time to time.
Look after yourself, Maria xx
Lulu34
Member

Re: Hello I am new here.

Like rattles the advice from our clinic is that ovarian cancer is extrememky rare before age 50 even with a genetic mutation so they usually recommend getting your ovaries out in your early 40s for brca1 and brca2.

Although you are being seen by genetics they wont be offering any testing until your isters results are back.... If she is negative they will not be able to offer you testing as they need to know where to look in your dna so if nothing is found in hers there is nothing they can look for in you.... This however wouldnt decrease your risk for screening and you shoukd still ge annual mammos from 40 to 50.... It could still be possible that there is a genetic cause of your mum and sister cancer but its just not known about yet.

If however your sister tests positive for a mutation then they can search for that same gene change in you this is called a predictive test.... Your sister will be having a full mutation screen.... In basic terms this is like them reading every page of yellow pages for our sister trying to find one spelling mistake..... If they find a mutation they will then know which page and which word on the page the spelling mistake is and be able to go directly to that word and page for those related to your sister. This precdictive test will either come back positive or negative.... Even if your sister has a mutation you do not need to be tested if you dont want to. You dont need to be tested straight away either you can take som time to think about the implications or yourself.

Your genetic team will look at your family history and you will be risk assessed.... From what you have said we would have given your family a moderate risk.... Which would have meant that your family didnt qualify for genetic testing but if you had other family members affected or they had bilateral cancer or triple negative breast cancer this could increase the risk to high risk and this would mean your family would be eligible for genetic testing.

I have brca 2 and iv had BC three times..... My son and daughter havent been tested yet but they are both thinking about it, but they are both still young 21 and 18 so still have lots of time to think about it.

Good luck
Lulu xxx
Rattles
Member

Re: Hello I am new here.

Hi Kaz,
I was given slightly different advice to Di- I was told that the risk for ovarian cancer (for brca1 at least) began at around age 42. The risk of developing ovarian cancer is about 60 per cent.
I know the stats seem scarey but honestly, take it one step at a time. If you go to the breakthrough for breast cancer website, they have a great publication on familial breast cancer. It is quite lengthy though. You will find that the process of genetic counselling is quite slow, you wont be rushed into anything. In fact, you might feel a bit frustrated at how slow they are!
I suspect the outcome of your sister's test will be important.
Like dancing girl, think hubby is probably overwhelmed and it is his way of coping.
Really good luk tomorrow.
Rattles

dib
Member

Re: Hello I am new here.

Hi Kaz,if you do carry the gene they will recommend that you have your ovaries removed by the age of 35,they dont like to do it earlier because of the effects of menopause.I was told that the risk of ovarian cancer when carrying the gene is 50%.Dont know anything about your endometriosis or erosion tho,but im sure someone will come along with some advice,good luck.xx
Di.x

Guest user
Not applicable

Re: Hello I am new here.

Just a quick question, if you don't mind.
Last year I was referred to Gynae and had a laparoscopy. It was found I had "mild polycystic changes" also endometriosis and cervical erosion. With regards to the ovaries, would I need to discuss that at my appointment tomorrow? Will that make a difference? Never thought about it until now.
dancing_girl
Member

Re: Hello I am new here.

Hi, I'm keeping my fingers crossed for you - it is a very worrying time for you all. Your hubby is probably very worried too, but is doing the typical male thing and is hiding his head in the sand. Many men do this - it is just there way of coping - very different to a women's. That is why the forums are so good you can come along and ask anything or pour your heart out.
Good luck with the tests.

Cackles
Member

Re: Hello I am new here.

Kazzarella welcome to the BCC forums. Everything has been so well said By the previos postings. You are now under a Genetics team and they will follow you up regularly and screen you appropriately. Do have a word with somebody on the Helpline. They are so good at putting things into perspective. Tel 0808 800 6000 9-5 mon-fri. Sat 10-2.
The Genetics team will be so aware of how you are feeling. They have contact with anxious people every day. If you have any niggling queries following your appointment you can give them a return call, phone the Helpline, do an "Ask the Nurse" email or post on here.
Best wishes
Cackles

Guest user
Not applicable

Re: Hello I am new here.

Thank you so much for the replies.
My Mum had her BC over 20 years ago. My sister has only just finished Chemo. She had her test in July and is due her results on 27th Sept. Because my Mum was only 41 my sister went to the docs and asked for screening. She had a mammogram in July 2011, but found a lump in April 2012... it had already spread to her lymphnodes so heavens knows how bad it would have been had she waited for her next screening in July 2012. I also worry because in all my family it was the right breast, not sure if that means anything.
My husband has said that either way this appointment is a positive thing and I don't think he gets how I feel. I tried to talk to him last night, but he kept brushing it off and shrugging his shoulders.I had to stop talking before I got mad and we argued.
I am on a childminding forum who are a great support, they suggest I come here also. Pleased I have now. Thank you x
Rattles
Member

Re: Hello I am new here.

Hi Kazzarella,
Sorry you are going through such a tough time. I really feel for you, it must be so hard to see your mum and your sister go through breast cancer. Not surprised you feel scared.
Like blonde and brainy, suggest you see the referral to genetics as a really positive thing. I know it is daunting but you will have access to screening and advice and support.
The whole area of genetics is complicated and it is hard to explain, but I think there are 3 groups, high, moderate and low - this is irrespctive of any genetic test. Also, my experience is that you will only be tested if one of your relatives has a positive test for a mutation- so you would need to wait for the oucome of either your mum or sister's test as they need to test someone who has/had cancer. If your mum has the mutation, you have a 50/50 chance of inheriting it. So, even if your mum or sister's test comes back positive, it doesnt mean your will.
Even without this though, you are likely to be offered screening.
I have a brca1 mutation. It was a huge shock to find out but try to remember that it is not a cancer diagnosis.
I understand your fears, but try not to panic and take this one step at a time- it is a slow process.
Sending you lots of support and encouragement.
Rattles

BrainyBlonde
Member

Re: Hello I am new here.

H Kazzarella, I'm so sorry to read your post but please be assured that getting tested, even if it turns out positive, can be seen as a real opportunity to get the best possible screening and, if need be, treatment that is available. I just wish some of my family who died of breast cancer had had the chance to get tested so that they would have been on their guard at least.
After my diagnosis, I tested positive for the Braca 2 faulty gene. My oldest daughter (30) has just got her genetic test and it is negative, so we are all breathing a huge sigh of relief. My other daughter (27) is getting tested this month so fingers and everything else crossed. Unless your mother tested positive for the faulty gene and your sister's test comes back positive too you may not get the genetic test as I understand it. However, they explain everything very carefully to you and are really nice and supportive.
Good luck with it all and give the hubby a big kick up the jacksie from all of us!
Jan
x

dib
Member

Re: Hello I am new here.

Kazzarella.I really feel for you and feel very angry at your oh for not giving you the support you need.The genetic clinic people however are very understanding and will offer you counselling and support if you need it,they will make sure you are ready for whatever result they may have to give you(this is what I found at Nottm city hosp and hopefully others will be the same).My two daughters were both tested after myself,my mother and my aunt all had bc.My 30 yr old was negative but unfortunately my 28yr old was tested positive for brca 1 gene,She has since had a double mastectomy with immediate reconstruction,she has coped extremely well with it all and is happy now the fear has largely been taken away.But she did have very good family support which I find is very,very important.Good luck to you sweetheart,I hope you get the support you need from friends or family or someone who can understand what you are going through.
Lots of luck and best wishes,Di.x

Jo_BCC
Member

Re: Hello I am new here.

Hi Kazzarella,

Welcome to the Breast Cancer Care discussion forums, you've come to the right place for some good, honest support from the many informed users of this site, who I am sure will be along soon to give you that much needed support.

In the meantime I have put for you below the link to one of BCC's publications you might like to read regarding breast cancer in families. Could I also suggest that you give our helpline team here a ring and have a chat with one of the staff, they will be able to explain things to you and point you in the direction of more support if it's appropriate. Lines are open now, calls are free 0808 800 6000, open Mon-Fri 9-5 and Sat 10-2.

http://www2.breastcancercare.org.uk/publications/worried-about-breast-cancer/breast-cancer-families-...

I hope this helps.

Take care,

Jo, Facilitator

Guest user
Not applicable

Hello I am new here.

Hello everyone.
Erm, not really sure where to start. I am only 28 and my Mum was diagnosed with breast cancer at the age of 41. It was found purely by chance (although I believe in fate and things happening for a reason) Basically she was a larger breasted lady and something really niggled her to get a reduction. She got the reduction and went back home. The consultant could not get o=hol of her until their post-op appointment 3 weeks later... His exact words were "I don't know how to tell you this so I will just come out with. During the operation I sliced through a mass. I removed it and had it sent for testing. Mrs X you have got breast cancer!"
Thankfully it was caught very early. The consultant had said it was so deep in her breast tissue had she not had the op, she would propbably not have found it in time. I was only young when this happened but always remembering having such a fear. To the point when I was 25 I had a breast reduction aslo.
Since then my eldest sister who is 48 has just been diagnosed with breast cancer. Now myself and other sister are having to see a genetic counsellor, My appointment is on Thursday and I have manged to not think about it, until now. Now I feel so anxious, sick, nervous! I have no one who can go with me, so I am completely alone.
I just don't know what to expect, or even how to deal with it. My sister (with the cancer) I believe has been tested for the gene, but I haven't heard back about that yet. I just feel in limbo and the husband is just "matter of fact" about it all. I put on a brave face, smile, make jokes. Pretend like it is just a casula appointment, when inside I am like a little child screaming and crying. Not sure if any of this is making sense, I am just prattling on. Sorry x