Hi Pennie
Happy Birthday for Tomorrow hun xxxx
Oh dear I am sorry you have all this on your mind and it’s your 30th. That alone made me almost have a mid life crisis!! I hope you have a lovely day and try and put all this stuff to the back of your mind and enjoy yourself. What are your plans?
Hope you are ok about your Aunt. It has taken me a year to really start grieving for my sister as I planned a large wedding last year, my sis died, I got married, I cleared her house, found out she was brac1 then I was brac1, got restructured at work and then had my breasts removed New Years Eve. Crazy how things all come at once!! It was great to start 2008 having completed my op. Feels like a fresh start!
I have delayed starting my family as I was advised to but mainly as my sis got cancer my age now. Brac1 and pregnancy don’t always go well together but you speak to the professionals before forming an opinion. Just make sure you are are emotionally ready for a baby with all this stuff going on. You have plenty of time so don’t worry.
Anyway clear your mind tomorrow and have a lovely birthday
Katie xxx
Hi, yes i had planned to phone the breast cancer care helpline at least as a starting point. I said to everyone that when my mum died it took me 18months to fall apart and 18 months to put myself back together. And then just when I felt I had myself back on track my aunt was diagnosed. As she was never married and had no children of her own we really did have a special relaitionship and it is more than just losing an aunt, I’m determined not to end up in the state I did when my mum died but also know that these things take time and that I can’t just decide that I’m going to be ok. I’m lucky that at this point in time I am very happy with my life in general have a great job and fantastic husband. He’s going to spoil me tomorrow for my birthday so am hoping for a good day. just feels like significant birthdays are never meant to be for me my mum was in hospital having her mastectomy on my 21st and now the next big one my 30th I have all this going on. I think I had my midlife crisis at 29 must have been brought on early due to life stress! Anyway the point of life is to live it and I’m going to do my best to keep positive and enjoy it. As for starting a family I will get as much info as I can and make a decision from there. No one ever said life was easy!
Pennie x x x
By the way, I’m sorry my reply is quite self centered Katie I can’t begin to imagine what all that has been like for you, losing parents is one thing at least you feel one generation removed, Losing your sister must be something else. You must be such a strong and special person to go through that and still be able to provide support to others
Lots of love x x x
Happy 30th Birthday Pennie
I am hoping you won’t read this tonight as you will be out somewhere lovely celebrating your birthday.
Don’t be daft your reply isn’t self centred! I just really feel for you hun and all you are going through! You sound like a strong person too! I guess we have to be!
I am so happy you too have a fantastic husband. I don’t know what I would have done without mine. I think to loose anyone close to you is equally awful. It is interesting what you said about 18 months as I really feel like I am only just starting to grieve. I think that the denial and adrenalin help us get through it until we can accept it. I think I have an amazing coping mechanism in my brain!
We mustn’t let this bloody disease ruin our lives too!
I like to think that I can live my life to the full and enjoy it and then will eventually be re-united with all the loved ones that have passed away and my sister will be there with my gran, Auntie etc and welcome me into heaven with a huge party and I will find out it was all a test!!
Anyway I am always here if you want someone to chat to. I am on facebook too.
Hope you had a lovely birthday and don’t feel too old! I am 33 so at least you aren’t as old as me!!
Take Care
Katie xx
Hi!
Pennie’s birthday is the same day as my Mums, and she is very lucky because she is 67 and the only sister of 4 who hasn’t had breast cancer.
My aunt has done the genetic test for me, after a few years of trying to get my cousin to do it. Now I am told that there is “lack of funding” so the results will take up to a year!!! Oh well, I am at uni at the moment so will have plenty to occupy my time.
Just wondered how long it took for others to get the results and how they felt whilst waiting.
Caz x x
Hi Caz, I was told it would take about 10 months because it’s a long process, the doctor described it as looking for a spelling mistake in a whole set of encyclopeadias. It’s not even been a month that I’ve been waiting and it feels like it’s been forever. Not really sure how I feel about it, try not to dwell on it too much. Think it’s quite draining though, feeling really tired and get stressed out by things more easily than I normally would, just because it’s all there in the background.
Take care x
Hello Pennie et al,
Happy Belated Pennie. Hope you had a good one.
I’m 34, 33 when diagnosed with breast cancer. I’ll try and keep this brief (not a skill I’m very good at)
My mum had breast cancer three times and five years ago tested negative for BRCA 1 or 2. Last year I felt a lump and mum received a letter from Guys telling her they had new info for her. I tested positive for breast cancer, grade 3 and week later we went to Guys to be told that they have retested mums blood sample and that she is a BRCA1 carrier. Mum had had a pain in her stomach for about a year and had been misdiagnosed with all manner of illnesses. My grandma dies, I test positive for BRCA1 and my mum is diagnosed with ovarian cancer and possible secondaries.
Mum and I are currently both receiving chemo. I am at the stage where I have decided to have prophylactic surgery and have seen a plastic surgeon. After having my stomach, boobs, bum and thighs squished about, the PS decided that I am not ‘fat’ enough to use my own flesh and will have to have implants. (Ibeg to differ about the fat part).
I didn’t want to have implants but he advised me that I could have implants and then in about 5 years time if I am able to get pregnant, they could give me new boobs using my newly expanded stomach.
I have decided to postpone surgery for a while as I want to ‘live’ for a bit after being on the dx, surgery, chemo treadmill. I have been advised that I cannot have radiotherapy as I want to have recons and because I am a BRCA1 carrier.
The genetics clinic are fantastic at Guys and I met with about 5 specialists who gave me advice about everything.
Right, I am going to stop now as I think I am rambling and I’m not even sure if what I have written is useful. (something to do with chemo brain), But please feel free to contact, ask questions etc.
I know that there is so much uncertainty with being BRCA and so many life changing decisions that we need to make so much earlier than we would’ve liked but if I can help I certainly will.
take care
nardyx
Hi All
I waited 15 months for my results from Guys. I agree they were brilliant there and very helpful, though I think I had been forgotten because as soon as I enquired if my results would be much longer, they appeared.
While waiting I tried to put the whole thing to the back of my mind but it’s always there. I have since started prophylactic surgery and am currently waiting for second mastectomy/recon and oopherectomy.
Good luck Caz.
Hi all
I am a Braca 1 carrier,had BC when i was 34 now 37.Had lumpectomy,lymph nodes removed,chemo,radio,ovaries removed and oct last yr had double mast and recon from my tummy.I have a small family but support from family and friends mean everything.I may have to have more surgery to even out my breast’s and have some new nipples made,it is a big decision to make but a good one in my eyes.There are 9 close family members who had it before me,3 of us have had this op and all were fine.
LisaB
Hi
I am just back from my appointment at Guys, I started my journey in 1996 (lumpectomy and radiotherapy and tamoxifen(I was tested for braca 1 and 2 and they came back negative. I have since had a nother dose of BC and had a mastecomy and chemo if my test comes back positive and it will mean the other breast off and overies etc removed. I just cant face chemo again and I think this will be my decision although I am very confused, thinking that after having my recon that would be the end of the journey again apart from check ups, this news however has thrown another spanner in the works, I am trying to think positive but its really hard.
Sorry to feel like this but I just needed to write how I felt today and I know you lovely ladies will have some great positive stories
Hi tinfish
Sorry to hear you on a downer,i used to have days like that.Have you been all clear since 1996.If so you sound very much like my mum,she had BC 15 yrs ago and was fine and then was dgn again 18 mnths ago in the other breast exactly 12 mnths after me.As you can guess we are Braca one carriers,there are 9 in our family.I sometimes sit and my mind wanders to what if it comes back.I know what you mean about not wanting chemo again,its not nice.Ihad 4 0f one and then 4 of another but the 2nd lot was in two sessions so i ended up having 8 it was awfull.But then i look around me,i have a loving husband and 2 sons of 3 and 6,what would they do if i wasnt here to look after them and that makes my mind up for me.Dont mean to pry but do you have any family.I have not been writing on this for very long and you are right in what you say about great positive stories.I wish i would have had a laptop when i was ill its nice to chat to people in the same situation.Hope you feel better soon,keep in touch.
lopez
Hi Lopez
Thanks for your reply, I was clear from 1 cancer to the other, I thought that my first tests were thorough but as usual (which is good) medical things are changing so now they are looking more into my blood test. I have 2 daughters in their 20’s so initially this 2nd round of tests were for them, as if they have a problem I want them to been seen straight away. I have spoken with my husband and he says whatever the test result he agrees with whatever treatment I choose as he wants me here for as long as I can be here for. My sister in law came over yesterday from America (shes a chemo nurse) and I told her what the hospital said ( I 'm not going to worry my Mum (recently widowed or my duaghters) and told her that if the results come through that i am a carrier then I will have the other breast off and the overies removed and she said as my friend did also yesterday that I dont really have an option as there as so many people who dont want to see me poorly again or worse not here.
I am feeling better than Monday, I think sometimes you just need to get it off your chest and have a good cry.
The positive side will be new breasts and if I have the other breast off a flat stomach!!!
Thanks again for replying and listening
xx
Thought I’d add in our experiences.
I was diagnosed as a BRCA2 carrier several years ago. Before knowing, I had already decided that I wanted my second breast removed (my initial cancer was 1996). I wasn’t keen on having reconstructive surgery, preferring to have the second breast removed. I guess at that stage it was an alternative to reconstruction for me-although at the back of my mind, I wondered if there was a genetic link to the numerous incidences from cancer in our family.
The results were returned as positive to the gene misprint, and so the surgery made even more sense. I have to say our local genetic team is excellent and have been incredibly supportive. Our daughter was also keen to be tested, and after several long chats together, they decided to test her (she was only 22 at that point, so testing one so young was not an easy decision).I also had a hysterectomy.
Since then several cousins too have discovered that they too are carriers, and without exception are glad to know. The only ones who are choosing not to be tested (which is perfectly reasonable), are my male cousins and my younger brother.