Genetic testing for breast cancer?

[~clover~]

Does anyone know anything about this?
My Grandma was diagnosed with breast cancer at about 44. She died at 61 & suffered for the whole 17 years in between. Her whole body was riddled by then
Mum wants my sister & I to have genetic testing to find out if we have the gene. Or any cancer gene really.
Does anyone know how we'd find out & if it would cost us anything, or is covered by medicare etc?
TIA

[lilima]

Not sure about medicare, but my OB/gyn said that she would refer me once I have finished breastfeeding. Both my mum and my aunt have had breastcancer. I have decided that if I carry the gene I am going to have a double mastectoy

[SugarDust]

When you find out Bjrose please let me know! My nan had a double masectomy because of Breast Cancer then she had tumors on her ovaries and her uterus so has also had them taken out, her mum died of Breast Cancer at the age of 55 so it would be good to know if I have the gene!

Mum and her sisters get checked every year but are still unsure about getting genetic testing done!

I reckon the best defence is knowing whats to come!

[Mak]

Your GP should be able to help as a first point of contact. They may refer you to a Familial Cancer Centre to assess your risk. It is quite a complex process with counselling involved too not just a blood test IYKWIM.
In Melbourne some contacts are;
Monash Medical Centre Familial Cancer Centre
Royal Melbourne Hospital Familial Cancer Centre
Peter MacCallum Cancer Institute Familial Cancer Centre
Genetic Health Services Victoria Familial Cancer Centre
or call the Cancer Council Victoria, Information and Support Service

GL

[Bathsheba]

I was wondering the same thing... thanks girls I also would consider a double mastectomy. I have finished BF (I fed for a total of 4 years). I am only an A cup so maybe it wouldn't be as traumatic... would consider maybe getting B cup implants as a consolation prize! Can you have implants after a mastectomy???

[AnyDream]

Yep Bath if you are having a prophylactic (ie precautionary) mastectomy, you can have a 'skin sparing mastectomy' with implants immediately. Well sometimes they have to put an expander in (same shape as the implant, but flatter) and then inject saline into it every few weeks to stretch everything so that the tissue/muscle etc is the right size for the implant, and then finally you have surgery where they exchange the expander for the implant you're having. Implants are particularly suited to smaller breasts and give a great result when you're having both boosies done at once.

For larger breasts you can have reconstruction done using tissue from behind your shoulder or your tummy - with or without a small implant - this gives a softer breast with a more natural hang, and they also gain/loose weight when you do.

In the event of, you need to discuss with a surgeon the risks/benefits of keeping your own nipples. Nipples can also be reconstructed with or without a tattoo for areola colour.

[Mak]

Yes you sure can! I think you have spacers put in at the mastectomy surgery which stretch the skin gradually and then the implants are put in later. Details a bit vague but I know of women that have had that done.

ETA - Snap MD but you have explained it MUCH better!

[AnyDream]

Mak - I'm having a mastectomy (one boob only) later this year so I'm like a woman obsessed right now! LOL

[Mak]

Completely understandable!!! I have seen some great reconstructions, you would never even guess - it is so different now to what most people imagine (usually based on horror stories from 20 years ago).
Thanks for sharing your expertise with everyone! I wish you a speedy and uncomplicated recovery later in the year.

[~clover~]

Thankyou guys for all of that. I didn't consider a masectomy, but its given me more to think about if I am genetically likely to get it. & its great to hear about implants too...it kind of scared me when I first read that you would do it megiemoppet. It would by far be the best answer, but the thought of doing it myself...I don't know.

It was my paternal grandmother & she only had 3 sons, so its kind of hard to determine just from family history repeating iykwim. My sister already has some AF related problems that are similar to what Grandma had, but we really know nothing about it. Pop won't speak about it & I really don't think they'd have had much Idea anyway. It was the 50s/60s, so not sure what they really knew back then. The only reason we know there were problems of that kind is because for some reason Pop blames Dad. (Her 2nd born.) I don't know if that means it started after he was born or what...there's never been any sort of explanation.

So I'd have to wait til after I finish BFing. OK, cool.

Bath - I like your bigger boobie idea I shouldn't complain being a C, but I have a feeling most of that's milk

MD - Thankyou for your personal insight. I really hope all goes well for you!!

[lilima]

Also to add, my mum has had double implants done, and has had the nipple reconstruction and the tatooing, and it looks SO good. You can't even tell they are fake.

I suppose seeing my mum and aunt so sick with chemo etc has made my decision easy. I am not that attached to my boobs, and in all honesty, they are saggy baggy now that I have been breastfeeding! Mum really loves that she now has nice boobs, so she has influenced in how I think.

[HotI]

Hi

In order to have genetic testing, you need to have strong family history of breast cancer or associated cancers. Only 5-10% of breast and ovarian cancers are caused by mutations in the 'breast cancer genes' BRCA1 and BRCA2.

These criteria can be used by GPs to work out whether a woman should be referred to a genetics clinic to see if genetic testing is appropriate:

# Have a close relative (parents, grandparents, children, grandchildren) with a known mutation in BRCA1 or BRCA2

# Have close relatives across more than one generation (for example, a mother and a sister) that have been diagnosed with early-onset (before age 50) breast and/or ovarian cancer

# Have an individual family member who was diagnosed with both breast and ovarian cancer

# Have had cancer in both breasts, especially if one or both cancers were discovered prior to age 50

# Are of Ashkenazi Jewish heritage with breast cancer before age 50 or ovarian cancer at any age

# Have a male family member with breast cancer

# Have other associated cancers/conditions

Testing usually begins with the affected person (someone who has, or has had a cancer associated with BRCA1 or BRCA2). If a mutation is found, then other family members can be tested. If a family meets the criteria (of being at high risk) then genetic testing can be provided at no cost.

Surveillance is really important for all women, as breast cancer is so common. Regular breast checks, even getting your GP to perform a check, can help pick up lumps early. And the earlier cancer is detected, the higher your chances of recovery,

[~clover~]

Thanks Kate
So how would I tell if I'm high risk? Since Grandma only had 3 boys & she has already passed?
She was under 50 when diagnosed. She did end up with cancer in both breasts & a double masectomy, but the second wasn't til I was in my teens...the first when I was very young. Because it spread so far through her body, there is every chance ovarian was involved...she did have it in her stomach & other places over the years. I haven't heard though.

[HotI]

Thanks Kate
So how would I tell if I'm high risk? Since Grandma only had 3 boys & she has already passed?

It can be more difficult to gather all the information when a relative is no longer around.

Do you know anything about your Grandma's brothers, sisters, cousins or their kids? Did any of the develop cancer?

How many kids did the 3 boys have? How many girls/boys? Is there any cancer in any of your cousins?

All of this information can help to assess your risk.

If your grandma is the only family member who had breast cancer, your risk would only be at or slightly above average risk. This is the risk given to 95% of the female population and gives a lifetime risk of breast cancer between 1 in 11 and 1 in 8. (More than 90% of women in this group will not develop cancer).

[~clover~]

Ok, will ask about her relo's. I really don't know.
All my cousins are younger than me, so no cancer yet. The other girls are 22, 19, 12 & the boys are all younger.
I should be able to find out. I'm sure mum said she wants it done because there is family history, but didn't say how. I'm sure there was more than just Grandma though.
A cousin had cancer, we lost her at 32, but she was on pop's side, so doesn't count. And it was in her stomach as far as I know...

[satya]

My mum's oncologist told her that usually you need 3 female relatives (grandma, aunts, cousins, sisters) to look into genetic factors for breast cancer.

In my family we have 3 who've had it - my mum, my cousin & my aunt (deceased) but they don't consider it (yet) to be genetic as my mum's is imflammatory breast cancer which is completely different & not believed to be genetic.

I would think that you will be charged for the genetic testing. If you are in a high risk family (my family is classed as high risk, just not high risk for the genetic kind) you can get referred to a bulk billing clinic for ultrasounds & mammograms but as far as I know you will still pay for genetic testing.

I had genetic tests for miscarriages a while ago & I was out of pocket around several hundred dollars & no-one warned me of the cost at the time, just got the bill in the mail & medicare covered hardly anything.... so check very thoroughly on the costs if you do go ahead with it so you don't get any nasty surprises. My mother also was tested for a different genetic thing not long ago & was sent a bill for it despite being an aged pensioner & again medicare covered just a tiny portion of it. Lots of things aren't covered by medicare these days.... my mum has even had to pay for some of her chemo & scans.

[~clover~]

Thanks Satya. I was pretty sure there'd be some kind of cost involved. Glad you warned me

Well all of Grandma's siblings have had some form of cancer. 1 had a brain tumour, 1 had abdominal cancer of some kind & the other we aren't too sure about. He has passed & mum is sure it was cancer of some kind, but not sure what.

So does that work at all? Would you be genetically inclined to get any type of cancer? Or was that just a fluke that all 4 have had cancer of some kind??

[HotI]

There are some genes that cause more than one type of cancer, but you would have to get the medical reports from the relatives to see the specific types of cancer, and see a geneticist or genetic counsellor for further info.

In Victoria, all reports are collected through the Cancer Council of Victoria so it is an easier process to get access to the reports. In NSW, I believe that you have to get access to each person's medical information individually from their doctor, which requires permission from the person or next of kin. (The Genetic Clinic can help with this if it sounds like the cancers may be genetic)

In relation to the breast cancer genes, the criteria for 'potentially high risk' and follow up with a genetics clinic for those women without breast or ovarian cancer are:

Two primary or secondary relatives on one side of the family with breast or ovarian cancers PLUS one or more of these features in same side of family
*another relative with breast or ovarian cancer
*breast cancer diagnosed before age 40
*bilateral breast cancer
*breast and ovarian cancer in the same woman
*Ashkenazi Jewish ancestry
*breast cancer in a male relative

OR

One primary or secondary relative diagnosed with breast cancer at age 45 or younger PLUS another primary or secondary relative on the same side of the family with sarcoma (bone/soft tissue) at age 45 or younger.

Genetic testing through a familial cancer centre does not cost the 'patient' anything. Only those families that meet the criteria, and where the chance of finding a gene mutation is high will have genetic testing.

Other genetic testing can have out of pocket expenses, but you should be informed of this prior to the testing being performed.