—Hello, I’m new here
—Hello, I’m new here —Hi, just want to say what a wonderful site!
My Mum was diagnosed with breast cancer at 39 and died age 47. We can’t get a full family history but think she had ovarian cancer as well.
My sister and I have had genetic counselling and we know we are at higher risk. We both have lumpy nodular breasts and she has just had a fibrous lump removed.
I had another lump in Dec, mammo in Jan which showed an asymmetric density and small cyst. i had a FNA on the dense area which came back benign C2. I don’t know what the C2 bit means though. I had ultrasound 3 weeks ago and got letter this morning saying it showed small cyst. The doctor hasn’t asked me to go back. I hate the thought of it being there. Is it wrong to want it out?
I had a hysterectomy 13 years ago and it wasn’t until they did the hystology they found I had level 3 precancerous changes. I saw GP this evening and she said to phone the doc at hospital. I feel like I need to see him to go over the results properly and he didn’t have all my previous films last time I went.
Sorry for waffling on!
Hi Debby Just wanted to say hi and welcome to the site. Really sorry to hear about your mum.
I don’t think it’s wrong at all for you to want the cyst removed - I think you should follow your GP’s advice and get back to the hospital and talk to the doctor in detail. Mention your concerns, and maybe find out about genetic testing while you’re there.
Good luck and let us know how you get on.
Cheers
Sue
Insist — that you have any lumps and cysts removed if you feel they should be. I don’t want to alarm you but I had fibroadenomas and cysts that were thoroughly scanned and biopsied, I was happy to leave them, safe in the knowlege that they were benign. The largest was hiding a cancerous lump behind it. I really would recommend that anyone with biggish lumps have them removed to make scanning clearer. I realise that persuading your surgeon to do this may be difficult as it is true that fibrous thickenings and cysts aren’t dangerous in themselves.
I also have a strong family history of BC and was having very regular checks. However my cancer had been there for quite some time and I had lymph node involvement before it was found.
I hope this hasn’t upset you debby and I’m sure you already know that fibroadenomas and cysts are completely benign. Just have 'em out to make the picture clearer!
Wishing you all the very best of luck xx
— —Thank you both. I phoned the hosp this morning and they said they will try to get me an appointment but it won’t be for a while as it’s not urgent. The secretary told me the doc obviously wasn’t worried but I think she realised how worried I was. They also said I would see a registrar not the specialist.
My sister and I have been told we can’t have genetic testing because you need a live relative with breast cancer to be able to test them and then us. The doctors have all been lovely but only someone in the same situation really understands. My GP is fantastic.
The specialist told me it looks like I have extra breast tissue growing and then talked about pigs having a really long milk line and they can grow extra tissue!! I have this in one and the cyst in the other,.
Thanks again for your replies
— —Thank you both. I phoned the hosp this morning and they said they will try to get me an appointment but it won’t be for a while as it’s not urgent. The secretary told me the doc obviously wasn’t worried but I think she realised how worried I was. They also said I would see a registrar not the specialist.
My sister and I have been told we can’t have genetic testing because you need a live relative with breast cancer to be able to test them and then us. The doctors have all been lovely but only someone in the same situation really understands. My GP is fantastic.
The specialist told me it looks like I have extra breast tissue growing and then talked about pigs having a really long milk line and they can grow extra tissue!! I have this in one and the cyst in the other,.
Thanks again for your replies
— —I can’t believe how quick my appointment has come through. They phoned me this morning at 8.45am and I go on 27th April. Hopefully I will get a nice doctor who will listen to me. Thanks for your support
Debby So glad you’ve got an appointment - it’s so important that you get the chance to speak to someone about your concerns.
Keep us posted and let us know how you get on.
Cheers
Sue
x
— —I will Sue, thanks. I just hope I get a doctor who listens to me. My sister had her lump removed and she said the relief is indescribable. They removed it due to her anxiety. Sometimes I feel as if I am just waiting to find out I have it. I get these lumps roughly every 2 years. My local hospital have now just got all their images stored digitally so there shouldn’t be the situation I had when my films weren’t there to compare.
One of my close friends is half way through her chemo course now. She has been amazing.
Thanks again everyone. Its so good to know people understand.
x
Well I had my appointment. It was a lovely lady who was very gentle and kind. It turns out my letter said I had a tiny cyst in my right breast but it was actualy in the left. The area of extra growth is in the left as well and aparently it cant be removed because it is just a lumpy nodular area. i didn’t really understand what she was saying , she also did another biopsy to confirm the previous results because she realised how worried I was. I have got to phone on tues to get the results and then go back in 2 months. She has also put me on the list to be recalled for mammograms every year.
Is it ok to have mammograms so regularly? thank you everyone for your support.
Debby x
Don’t Give Up Hi Debby,
I just thought i would tell you my experience with regard to the availability of genetic testing.
I too was told that the genetic test would not be available - in my case it was because all but one of the affected members of my family had already died. (I was told two positive samples were needed).
We just accepted this until the Alder Hey Hospital scandal (where tissue samples were taken from children treated at the hospital and stored without the parents knowledge or consent).
My Mother came up with the idea that if it was common practice to retain tissue samples from those children, then maybe the practice was much more widespread and tissue samples from my relatives may also be retained.
We found that in fact this IS the case.
Believe me it wasn’t easy but we managed to track down samples from my sister - eight years after she died!
So, it might be worth having a think about it. if more than one of your relatives has died of breast cancer - then it might be worthwhile writing to the hospitals where they were treated.
You just never know.
Myself and six of my cousins have now been tested and four of us have been found to have the faulty BRCA1 gene. Three have already had preventative mastectomies and i am waiting for a date to have mine done.
Don’t give up.
Good Luck
Gingernut
Thanks gingernut, it could be worth checking it out, even after 13 years. The trouble is once I tell the doctors I was bought up in the care system and getting a family history is dificult to say the least, they
then treat my sister and I as only having one relative affected.
What I don’t understand from my appointment the other day is the doctor said that as my Mother’s cancer was diagnosed at 39, (the same age I am now,) once I am 40 my chances of getting it will decrease, all said in the same sentence as from your 40th birthday (December) you will be on an annual recall for mammograms. I thought my chances would increase naturally with age anyway so my husband and I don’t understand that statement. My sister was told the opposite, both of us attending the same breast clinic at the same hospital with different doctors.
My head ends up swimming with it all, and the doctors don’t seem to have the time to sit down and really go through everything thoroughly. I think when I go back in 2 months I will take sister or hubby and get the doc to recap everything.
Thanks for support. I wish I had discovered this site years ago!
debby
x
i am new too hi just wanted to say hello really i have just seen gp and have been refered to thehosp so an=m wainitg for an appointment , my mum also died at 47 from secondary cancers after a 7 year battle from breast cancer , i was wondering about genectic testing but dint i need my mums genes/blood etc for that???
had another appointment Hi, I had another check up today with my lovely lady doctor. She wants me to have another ultrasound as she can still feel the lumpy area. She said the area is a large nodular area and can’t really be removed because the tissue would probably just grow back again! She did stress she doen’t think there is anything to worry about as I have had a mammogram, ultrasound and 2 FNA and they have all come back clear, but she is keeping an eye on the area to watch for any changes. I will prob have to wait about 5-6weeks for the scan and then wait for an appointment with the doctor again for the results.
Part of me is obviously very relieved but another part is getting a bit fed up. I feel like this is going on forever.
I was wondering if anyone has heard of this ‘extra tissue growth’ and does it have a name, what are the chances of it turning into BC?
Also, what I don’t understand and I’m sure there is a simple answer, but if they have my late Mum’s lump why do they need a live relative with cancer to test for BRCA1 or 2?
Many thanks for your support
Debby x x
Hi, just wondering if anyone could answer any of my questions in my previous post? My ultrasound has come back quite quickly for July 21st.
Thanks
Debby