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Personal history of breast problems, family history of breast cancer and preventative mastectomy

5 REPLIES 5
Lulu34
Member

Re: Personal history of breast problems, family history of breast cancer and preventative mastectomy

has your mum spoken to the genetics folk? i think its prob not likely she will fit the criteria for gene testing and normally its two family members in their 30s who would meet the criteria but there is no reason why she cant request a referral to discuss the risk to your family.

as for symptoms if you notice any changes to your breasts then do get it checked out and dont worry your wasting peoples time because your not.... its better to get checked out and be nothing serious than leave it because you dont wont to be a hassle and for it to be cancer.

if your not happy with their reply you can go back and ask them to check again if its still bothering you too.

as for your employer do you have an emplyee relations or occy health department that can help support you and your employer to make suitable adjustments... wouldnt be thinking what will happen in 10 years as the guidelines could all have changed by then but they should make adjustments for you now in the short term.

best wishes

Lulu x
BlissC
Member

Re: Personal history of breast problems, family history of breast cancer and preventative mastectomy

Thanks Lulu,

I keep telling myself everything's going to be fine, but then I keep remembering what happened when my mum was diagnosed. Everyone said it would be fine, even though her mammogram wasn't quite normal ("there's something, but it doesn't look like anything suspicious" was how they put it) but she was in such a state because of her mum and the fact that she was almost exactly the same age as when my grandma was diagnosed, they did a biopsy really just to reassure her they said afterwards. Everyone from the breast care nurse, the sonographer, and even the consultant was so shocked when the biopsy results came back, because even he said he'd not thought it was going to be cancer. She had multi-focal lesions, though they were all only millimetres in size. She had a nipple discharge, but it only happened once.

I started getting a discharge about 6 years ago, on a fairly regular basis, hence the ductal excision on my right breast 4 years ago, but that didn't stop the discharge (it sometimes happens, my consultant told me). As with my long-term conditions, when you have symptoms which could be just your usual symptoms, or could be something more serious, you never know when you should bother your doctor with the symptoms, and with some doctors they tend to just dismiss the symptoms as part of your existing conditions.

I guess at the moment I'm feeling down about my other conditions because of hassle at work (I'm a wheelchair user and my employer's being less than helpful about making alterations to the new office we've moved into). I'm having a bad patch generally health-wise so I'm struggling with day to day stuff and managing to work part time, and health-wise I'd really struggle to cope with anything else now, let alone in 10 years time, and with this on top of everything else I'm panicking a bit. It's just ever since I passed 40 I've felt as though I'm on a countdown to 50 - the age both my grandma and mum were diagnosed, and I just don't want to worry about this any more.

Never mind, I have a day of tedious data entry at work tomorrow to take my mind off the appointment!
Lulu34
Member

Re: Personal history of breast problems, family history of breast cancer and preventative mastectomy

hi bliss

To get risk reducing surgery you normally need enough of a risk.... Eg a high enough risk to fit the criteria for genetic testing in order to be tested.... This is used to be 4 cases of breast cancer... The criteria for testing has dropped bu the criteria for surgery is still pretty much the same.... All the guidelines means they test more people they dont expect to get more positive results but that more people are reassured they dont have the genes.

Normaaly risk reducing surgery is an option for people who carry a genetic change and the previous testing criteria was 4 cases of BC occuring under age 60 in 3 generations.

Its maybe something you coukd ask to discuss with a genetic counsellor or genetic psychologist which you normally have to do before having this type of surgery anyway.

Hope your results are ok and that you can get some answers xxxx
BlissC
Member

Re: Personal history of breast problems, family history of breast cancer and preventative mastectomy

Thanks June, I'll maybe do that.
June_BCC
Member

Re: Personal history of breast problems, family history of breast cancer and preventative mastectomy

Hello BlissC

 

Welcome to the forums, this must be a very difficult time for you but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.

 

In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

Best wishes

June, moderator

 

BlissC
Member

Personal history of breast problems, family history of breast cancer and preventative mastectomy

I'm 41 and currently waiting for the results of my latest mammogram and ultrasound after I found a lump in my left breast a few weeks ago. Everyone who's ever examined my breasts (medical personnel obviously!) has commented on how lumpy they are. I get used to where the lumpy areas are though, but this new lump is in an area that isn't normally a lumpy area.

I'm somewhat reassured by the fact that when my GP examined me she said that it didn't feel like anything 'sinister'; more like an area of thickened breast tissue, and the consultant I saw at the hospital said pretty much the same thing, but as always, that I needed a mammogram and ultrasound to double-check. When I went for the mammogram and ultrasound last week, the sonographer said the ultrasound looked fairly similar to my previous ones; again reassuring. One of the breast care nurses also said it was positive that they'd not done a biopsy, but obviously until I see the consultant next week for the results, I can't be sure.

Since my early thirties I've had breast problems - nipple discharge and breast pain, often severe. In the past this has been predominantly in my right breast. It culminated in 4 years ago having a ducal excision on my right breast. Unfortunately it didn't solve either the pain or the discharge, which I still have on a regular basis. I'm now also getting severe pain in my left breast too, around where the lump is.

I also have a family history of breast cancer. 13 years ago, literally days before her 50th birthday, my mum was diagnosed with breast cancer. Following a mastectomy and radiotherapy she's done well, though had a recurrence of the cancer on her chest wall a couple of years after her original diagnosis, which was removed, and she's had no further problem since. My grandma (my mum's mum) was also diagnosed with breast cancer aged 50. Though she was 5 when she was diagnosed, she developed the cancer in her late 40s, but ignored the symptoms, not going to see her GP until it was too late. By then her cancer was too advanced for treatment to make much difference, and her cancer had already spread. She died less than a year after she was diagnosed. Both my mum and dad have at least one aunty who had breast cancer.

The final factor is my general health. I'm disabled and have only limited mobility. I have a number of long-term conditions, and as time goes on, my conditions and symptoms and my ability to cope with additional health problems diminishes. One of my fears is that if I were to develop breast cancer in 10 years time, around the age both my mum and grandma were diagnosed, that given the fact my long-standing conditions would have worsened by then, my ability to cope with cancer and its treatment would, at best, probably put an end to me working (I struggle with work, even though I only work part time now).

When I go back for my results next week, apart from getting my results, I was intending to ask my consultant about genetic testing, and having regular mammograms (at my last referral to the breast care department before this one, I saw a different consultant, as my usual consultant wasn't available, who said there was no need for me to have regular mammograms). For a long time though, although I know it's not the way to look at it, on the subject of cancer I've thought of it in terms of 'when' rather than 'if'.

It's something I've thought of for a while now, but recent events have concentrated my thoughts on the subject, and I've decided that I want a preventative mastectomy(ies). I've been looking a round online for information about having surgery on the NHS, and it seems that one of the criteria is 2 or more close relatives and/or the presence of the BRCA or TP53 genes.

I'm not sure if I'm reading the guidelines right, but it seems that a grandmother isn't classed as a 'close' relative. Am I reading this right?

Does anyone know whether the guidelines/criteria set in stone, or are other factors taken into account as well?

Thanks,

Bliss