I thought waiting times for results were supposed to be getting better. Had my test done last April and have just been told it will be at least another 6 months for results. Whilst I appreciate they are busy, do they not appreciate just how hard the waiting is.
Karen x
Hi Karen
That’s crap. That is nearly a year! There is nothing worse than waiting!
My sister’s test took at least 6 months. She had cancer and didn’t get her results as she died but after getting hers for brac1, I got tested and mine took 3 weeks. It is all the appointments, counsellor people etc seem to slow it down! I stamped my feet and pushed for my operation and had that about 3 months after.
It seems to be a post code lottery too! Nottingham was faster.
Hang in there and I hope they come back negative. Maybe keep chasing it as that does sound so slow.
Take Care
Katie xx
Hi Karen and Katie
I’ve heard it can take around 9 months in some cases. I had genetic testing and mine came back within 2 months. Katie so very sorry to read about your sister.
Ruby x
I’m still waiting for mine - was tested last June. Another friend of mine was tested at the same time and her results came back in December but I have been told it’s not always that easy trying to find it. Once it’s located and if you carry one of the genes then they know which grid to go to if other members of your family are going to be tested.
I was told it could take up to a year, which is a huge improvement on what it was when I was first diagnosed (1995) - the test wasn’t that accurate at that time and could also take up to 2 years so improvements have been made.
Pinkdove
Thanks Ruby
Pinkdove
I’m so sorry you are still waiting too. Are you the first to be tested? I think it is complicated if you are the first to be tested as it took my sister’s results alot longer than mine and then I suppose from that they know what they are looking for. We were told if we sent her blood to Nottingham it would be much faster than Leeds so I suppose it also depends where you are too.
Best of luck
Katie xx
Hi Katie
Yes, I’m the first to be tested. I was offered the test 7 years ago but told it wasn’t that reliable then so declined it. I think you’re right it’s harder being the first one as they don’t know where to look!
Mine is being done at Addenbrookes in Cambridge and it might also depend on where you live.
Love going up to Leeds! My son is at uni there! I’ve also got a friend who lives in Roundhay so I usually meet up with her for the day and we go to Harvey Nicks…
Pinkdove
Hi Pinkdove
I do think it is harder as your the first but I do think postcode has an influence too!
I now live in Nottingham as I went to Uni here but my parents live near Leeds. Yes love shopping there too, especially love torturing myself with things I can’t afford in Harvey Nicks!! My Dad takes me for lunch there when we catch up! Apparantly Nottingham is one of the best places for all this genetics stuff so I’m lucky. We want to move back up North Yorkshire, maybe Harrogate or Wetherby in a few years. I love it up there.
Take Care
Katie xx
Hi Katie
I’m originally from Lancashire but live in Cambridgeshire and my brother in law and his wife used to live in Nottingham until a couple of years ago so we used to go over there quite a bit.
We’re hoping to go to Harrogate for a couple of days in May when it’s our wedding anniversary - never been before but it just appeals to me.
I love going back up north (have most of my family still up there) and it feels like going home…
I agree with you about not being able to afford anything in Harvey Nicks - the special lunchtime offers are the only thing I can afford!
Pinkdove
xxx
Pinkdove,
I have to be the bearer of bad news, but my mum was the first one to be tested in our family 23 years ago when she first got bc. She had the blood test just after her first mastectomy and they said they could contact her as soon as the results came through.
Anyway she heard nothing from them apart from a token letter now and then with studies they were doing.
20 years down the line she got bc in her other breast and just after she had another mastectomy she was called back to the family history clinic and given the results that she had BRCA1 and that we should all be tested.
I was referred by my GP, eventually got my test after pulling a strop on the consultant and was given the results 8 weeks after my blood test. Unfortunately I have it too and am waiting for an appointment for a surgeon at the moment.
I am convinced that they just forgot about my mum until they saw her name come up again. I would keep chasing them if I were you.
Sorry for the rant, I know this is probably one of the few cases that take so long and I’m sure you won’t be waiting too long, just keep on at them.
Take care
Cathy x
Hi Cathy
That’s really bad that they forgot about your mum. I think I’ll have a word with my breast care nurse and see if she can look into it - thanks for that.
The weird thing is that because of the type of breast cancer I was originally diagnosed with the chances of it coming back were in my other breast, like your mum’s but it didn’t - it decided to come back in my spine and liver instead, what a bummer!!
Glad you posted and I think it’s about not always assuming that things are ‘in the pipeline’
Pinkdove
I was the first one in my family to be tested and I had to wait 17 months for the results. My siblings who were tested only had to wait for 4 weeks.
Cathy, I’m curious as to what they were testing your mum for 23 years ago as BRCA mutations weren’t identified until early to mid 1990’s.
Pinkdove,
I’m so sorry things have turned out like that for you. Hope you’re ok.
Keep us posted with how you are getting on.
Take care.
Cathy x
Hi Cathy
Thanks for that. I think it was always on the cards for me but I had a good 10 years in remission and my quality of life (although it’s now with secondaries) is presently good and I hope it remains like that for a good few years to come!
I’ve always been proactive in things whether it’s been my personal or work life. I had to give up work but have swapped paid employment for unpaid as I’m involved in our cancer network group, BCC, etc - it keeps the grey matter going!!!
Pinkdove
x
Hi Everyone.
I asked to be tested for a genetic link when my mum was diagnosed with BC approx 15 years ago, she has multiple aunts and cousins also diagnosed, but I was turned away. I was told to come back if a second 1st degree relative was diagnosed. When my mum was diagnosed for the second time approx 3 years ago, I returned to my GP and was referred to Guys. I spent the next couple of years waiting for appointments and, although no faulty gene was identified, I was placed as having a high risk to BC, ovarian and a possible link to leukaemia.
I wish I had found this site at the time I was trying to decide whether to have surgery or opt for monitoring.
4 weeks ago I had my first mastectomy, with implant and latissimus dorsi muscle flap, and the feeling of relief is undescribable!!! I will be having my second op in a few weeks and will then contemplate having my ovaries removed ( I am nearly 40 and completed my family).
I can relate to the long and difficult waiting, but now it doesnt seem to matter and I am just pleased I was ‘brave’ enough to put my, otherwise healthy, body through such major surgery.
I hope everyone is having the same lovely spring weather as Kent, saw my first lambs in the fields yesterday. A good time to be off work!!!
Best wishes,
Jackie x
Pinkdove
I really hope hope you keep on fighting those cancers and your quality of life continues to be good for you.
On a lighter note, when you go to Harrogate in May you have to have to go for breakfast, brunch, lunch or afternoon tea at the famous Betty’s Tea shop. The cakes are amazing and all the other food is lovely too. I like Yorkshire Rarebit. The que’s always look bigger than they are and go down pretty fast, so don’t be put off. Lovely tea menu too. Where abouts are you staying? If you want somewhere nice to eat out I recommend Chez La vie (french style restaurant) and the Orchid Thai restaurant (pretty pricey). If you want any other nice places ask away!!
Take Care of youself
Katie xxx
Hi Jackie
I’m really glad your operation went well. I had mine about 7 weeks ago but with tissue expanders and I agree the relief is amazing!
Best of luck with your next op.
Cathy
I’m so sorry about your mum and your long wait
Katie xx
Hi Katie
I’ve heard about the famous Betty’s Tea Shop before so that’s a definite must! Haven’t booked anything yet but a lady I spoke to on Monday (at the BCC focus group for secondaries and employment) comes from Leeds and said The Queen’s was good to stay at.
I think I’ll probably just look on the net and see what looks good and fairly near to the centre and then book it. Unless you have some suggestions?
Thanks for the info on the restaurants as well!
Pinkdove
x
Hi Pink Dove
Just wrote a really lengthy e-mail and lost it as I didn’t sign in!!! GRRR
I think The Queens is in Leeds. Was it Harrogate you wanted to stay in?
It all depends what you like: Modern chic boutique style, Traditional or B&B?
I have recently stayed at ‘Hotel Du Vin’ which is part of a chain but is a really lovely boutique style hotel with nice bar and restaurant in the evenings. It is opposite the Stray, very near the shops and Bettys! Old Georgian building with modern chic interiors.
Another boutique hotel is ‘The Balmoral’ which looks nice but is about a 10 min walk from centre.
There is ‘The yorkshire Hotel’ that is very central and neer shops etc
If you prefer a big traditional 4 star hotel you could try ‘The Old Swan’ (part of The macdonald hotels group). It always looks lovely or other big traditional hotels are ‘the Crown’ or The Majestic’
Hope this helps! I can give you more help if you know what you are looking for and what your budget is.
Take Care
Katie xxxx
Hi Katie
You’re right - the Queens is in Leeds isn’t it, right next to the train station!!! When I saw the Crown - that’s what I meant!
Thanks for the other suggestions as well. I’ve just said to my husband that we should book it soon - it’s our 25th wedding anniversary and didn’t want to go abroad so plumped for Harrogate.
Thanks for your help! I might well come back to you if I’m having probs
Pinkdove
Hi Pinkdove
I hope you find a nice hotel. They all have websites but I thought the moderators might block them if I listed them!
25 years. That’s great congratulations! It will be my first wedding anniversary in June! We have been together 12 years though!
Take Care
Katie xx