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Genome testing

Barbteeth
Barbteeth

Hi ladies

I asked my oncologist about genome testing and she seemed reluctant but said ok as my private insurance would pay

Well they won’t and it will cost £2400 to have done privately

They refused because I’d had two lines of treatment....surely that would suggest it would be of benefit?.. or am I considered now to be a lost cause!!

My oncologist did say that the test may show a gene that there was no treatment for anyway

I don’t know what to do and I’m thinking why wasn’t the test done after the diagnosis...

Maybe it’s the UK that don’t regularly request them

Barb xx

70 Replies
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It can only give you more information, which I think is a good thing even if there’s nothing to be done about it. If you have the money, consider it. I had it done and nothing changed. But I was glad to have info in light of progression. Best.

Going to check and see if it was done to me whilst in the hospital after I broke my leg. Will report back! is there another name for it so I can be sure and identify it? <3 xoxo

I did not see anything specific stating Gnome testing, but did find out that have GATA 3 positive which is a good thing and wasn't explained to me. Anyone know if that means I was gnome tested? I will ask the doctor if I ever hear from him again .... If I weare you, I'd go ahead and have the test done for my peace of mind if nothing else. Remember, you do not have an expiration date and ALL THINGS ARE POSSIBLE to those who believe, we serve a mighty God who loves us more than we can comprehend! <3

Barbteeth
Barbteeth in reply to Godbeforme

You must have been tested otherwise this would not be in the report

I’ll just have it done anyway so all avenues have been looked at....all the money I’ve saved during the lockdown will pay for it anyway..had .no hair extensions gel nails trips to cinema and theatre no new clothes hardly any petrol etc etc

Barb xx

Godbeforme
Godbeforme in reply to Barbteeth

I hear you loud and clear and think that's a wise thing to do! Yes, we have saved alot too, just rolling in the dough here lol :)

Barbteeth
Barbteeth in reply to Godbeforme

I’ve never been so rich....not much good now though

Barb xx

Godbeforme
Godbeforme in reply to Barbteeth

prayers for good things to happen for you and soon, and I ask it in the name of Jesus, the Waymaker, Miracle Worker, Promise Keeper, Light in the Darkness, My God, that is WHO YOU ARE, amen. that's one of my favorite songs, will see if I can find it for you! :) xo

Godbeforme
Godbeforme in reply to Barbteeth

youtube.com/watch?v=sSkRf0Y... Waymaker ... hope the link works

Barbteeth
Barbteeth in reply to Godbeforme

Hi there

Sweet of you to think of me

Barb xx

Hi Barb,

I agree with Nancy it will give you more information. In my case, I developed the ESR1 mutation (resistance to endocrine therapy) hence the reason Femara and Ibrance stopped working after 18 months. Now that I have this info my oncologists and I can make informed choices about my care. I am currently on Fulvestrant and when that stops working I will enroll in a clinical trial that specifically targets the gene. Genomic testing is expensive and my insurance didn’t cover it but I was able to get it free through a program that was offered by Guardant 360 in California. I received the results in a week. Here is a link for the website guardanthealth.com/solutions/

xo Jade

Barbteeth
Barbteeth in reply to Wintervt

Hi Jade

I remember you posted about the ESR1 and it made me wonder if I could be similar as the A1 haven’t been very successful for me...hence I’m on faslodex injections which may help

Barb xx

Wintervt
Wintervt in reply to Barbteeth

It is worth looking into! Hoping for the best for you!

xo Jade

NShaft
NShaft in reply to Wintervt

I had the Guardiant test and no mutations showed up. I suppose that was information in itself. However, my Dr at Mayo said he was sort of hoping to find the ESR1 mutation as he had a clinical trial he was filling or starting. I know he wasn't hoping for a mutation for me so I wasn't offended. I don't know anything about the trial but you might look into it at some point.

Hi Barb,

I am annoyed for you! Genomic testing is available for free on the NHS. I know you have private insurance, but can you ask for an NHS referral so that you won't be left out of pocket? I asked my oncologist about genomic testing and she immediately put a referral through for me with a neighbouring hospital where she also works. I found out that I have the PIK3CA mutation, which responds well to piqray (alpelisib). I would push for the test. It may show that you are a candidate for certain drugs, so at least you will know what to expect. I don't like your oncologist's attitude.

Genomic testing is available for us, but we have to ask for it. It is not routinely offered. I hope you can get it done. As a last resort, I would pay for the test. I pay privately for some of my healthcare, something I didn't think I would ever do. But I feel I am worth it. I am not a lost cause, and nor are you.

Sophie x

Barbteeth
Barbteeth in reply to SophSP

Hi Sophie

I’ve emailed her secretary and she’ll ask the oncologist to phone me

I’ll just pay ....but I’m annoyed the option wasn’t given to me at the start

It may end up not telling me anything but at least I’ll know

Barb xx

SophSP
SophSP in reply to Barbteeth

Hi Barb,

Let me know how it goes with your oncologist. I hope she agrees to let you have the test done on the NHS. I don't see why not when it is available.

Sophie x

Barbteeth
Barbteeth in reply to SophSP

Hi Sophie

Hmm I somehow doubt it but will ask

Barb xx

SophSP
SophSP in reply to Barbteeth

Hi Barb,

It's definitely worth asking. I am surprised your oncologist would hesitate to refer you though, as it's covered on the NHS.

Sophie x

Barbteeth
Barbteeth in reply to SophSP

Hi Sophie

I spoke to my oncologist and I can only have it done privately...her secretary has negotiated a small discount so I’ll just pay

She seems to still think it’s too early to have it done (what!!!) seems to think it’s of use mainly if I run out of options

The liver biopsy just confirmed that it’s definitely breast cancer and 90% oestrogen positive

Thank you for your support as always

Barb xx

SophSP
SophSP in reply to Barbteeth

Morning Barb,

I’m glad you heard back from your oncologist. I can’t say I agree that it’s “too early” for genomic testing. Surely, it’s a good idea to know what potential future treatment options may be available before you get to that point. I’m sorry, Barb. I’m sitting here eating my breakfast shaking my head in disbelief. I hope that you can have the tests done soon.

Sophie ❤️

Ange0901
Ange0901 in reply to Barbteeth

The fitter you are the more chance you have of being accepted on to a clinical trial. This is why it’s so important to act quickly. Trials should be amongst our first drug options, not our last.

Barb , did your onc say why you couldn’t have it on the NHS ? Could it be that it was on a trial which has ended ? Or related to Covid -19 and subsequently what is classed as urgent treatments only ?

I have never heard about it from my onc , only from this site . I will ask my onc about it when I next see her , but that’s not till August , just to see whether it would apply to me in the future .

I do wish you could have it on the NHS and then the decision would be a lot easier to make . Have any other ladies in the U.K. had this testing on NHS ( I am aware of only Sophie ) and did anyone have it during the last 12 weeks of lockdown ?

Good luck Barb ! At the end of the day , do what you’re happy with ! x

Hi there

Yes I only know of Sophie having it done and she had to request it

I’ll just pay...have been offered a small discount...now I know it exists I want it...we only have one life and in the whole scheme of things having to pay isn’t a big deal

Barb xx

SophSP
SophSP in reply to Barbteeth

Hi Barb,

I wish you all the best as you have the genomic testing done. Let me know how you get on.

Sophie x

Barbteeth
Barbteeth in reply to SophSP

Sophie I will...it’s being organised now...think I have to have bloods done and there’s a histology report on the liver biopsy from when I had gall bladder removed...I had to chase that up as the surgeon didn’t send it to my oncologist...sometimes I despair!!

Barb xx

SophSP
SophSP in reply to Barbteeth

Chasing up results is a pain! I called the oncology nurses twice since February asking for my radiology report, but they didn't send it. I gave up in the end and had my GP print it off for me. I hope it all goes well. You will need another biopsy, blood test and probably an ultrasound.

Sophie

Teddielottie
Teddielottie in reply to SophSP

I always get a copy of my ct report from my GP admin , even if I have had verbal feedback from my onc or nurse . I always look to see who the radiography consultant was , as often they are contracted out to an external company , so do vary slightly ! x

SophSP
SophSP in reply to Teddielottie

Yes, I will just stick with getting it from my GP. Requesting it from my oncology nurses or oncologist is like pulling teeth.

Barbteeth
Barbteeth in reply to SophSP

Sophie I’ve just been rereading these posts re genome testing and getting records and results...I had to smile at your comment ‘it’s like pulling teeth’

I always found that easy!!!!

Barb xx

SophSP
SophSP in reply to Barbteeth

Hi Barb!

That's funny. OK, so maybe it's not like pulling teeth for you, but let's just say it is challenging! When I saw my GP for my zoladex injection yesterday I asked her to print my radiology report after I have seen my oncologist (I will find out the results on Monday when I see my oncologist). She is off on Monday, but will have them ready for me on Tuesday. Now there's a doctor with the best bedside manner, ultra helpful and who is never afraid to fight my corner if I need help. She is wonderful.

Sophie x

Barbteeth
Barbteeth in reply to SophSP

Shame they’re not all so accommodating

Barb xx

SophSP
SophSP in reply to Barbteeth

Yes, I know. I sometimes wonder why some people become doctors and nurses when they do not always seem to have their patients' best interests at heart. Fortunately, most of my medical team is fine.

Sophie x

Barbteeth
Barbteeth in reply to SophSP

It does help to feel supported and listened to

The centre I go to can sometimes seem a bit scatty but on the whole they’re ok

Barb xx

SophSP
SophSP in reply to Barbteeth

Hi Barb,

I agree with you. We deserve to be supported and listened to. I’m just so relieved that none of my treatments or other appointments have been cancelled. Did you hear about the young man on the news the other night whose MRI from March got cancelled? He finally had it and is starting treatment, but he has a very aggressive, fast growing cancer. Due to the delay in starting treatment this may have altered his prognosis. I was upset to hear his story. He has a newborn baby and is worried he might die prematurely.

Sophie

Barbteeth
Barbteeth in reply to SophSP

That’s terrible...I don’t watch the news anymore...I buy The Times every day and read the bits I want....stuff upsets me on tv...e.g I can’t read about Madeleine McCann as it brings out feelings of hate about that man who took her...I’ve seen the headline that’s all

Barb xx

SophSP
SophSP in reply to Barbteeth

I know. It’s terrible, Barb. It’s also sad about Madeleine McCann. Not knowing what really happened to her all those years ago must be absolutely heartbreaking. German authorities seem to believe she is dead.

Sophie x

SophSP
SophSP in reply to Teddielottie

Hi Teddie,

I'm stumped. I really am! I don't know why I was able to get genomic testing done on the NHS, while Barb was denied it. I had it done in January before the lockdown, so I don't know if that may have influenced the decision.

Sophie x

Teddielottie
Teddielottie in reply to SophSP

I’m glad you have had it and it has helped you , and I hope that there are opportunities for other U.K. ladies to have it in the near future , possibly on NHS ? x

SophSP
SophSP in reply to Teddielottie

Thank you. I just assumed it was widely available on the NHS. Maybe it's only in certain parts of the country. I'm in East Anglia.

Sophie

Teddielottie
Teddielottie in reply to SophSP

Was yours part of a trial ?

SophSP
SophSP in reply to Teddielottie

No, my oncologist said it's available on the NHS. So I assumed it would be available to all cancer patients who asked for genomic testing.

Julie2233
Julie2233 in reply to SophSP

Each health authority makes a decision on the treatment that is offered once it's been authorised by NICE. Each CCG is allocated a budget and decides how to spend it. The postcode lottery is still going strong, though you can now request treatment in a different authority, you don't have to stay with your local hospital- but not many people know that.

I moved hospitals because my local hospital wouldn't prescribe ibrance but I knew the neighbouring authority did.

Barb I inquired about this a while back and it isn't covered by my plan either and would be $6000 which I was willing to pay out of pocket. However my oncologist didn't feel it would be beneficial because it tests for almost every mutation that exists and even though it is 2020 only a few mutations have an actionable drug available to treat the mutation. She showed me literature examples that had seemed to pick out the viable mutations with low percentages and very unlikely to work but it appeared that the testing companies were trying to show their worth by saying a particular drug would be effective.....even though the likelihood that it would was almost zero.

Anyway if it would make you feel better and you can afford it then go for it.....but just be aware that it may not find a mutation that is currently actionable. Best of luck.

Sandra

Barbteeth
Barbteeth in reply to girlsptz

Hi Sandra

I know what you are saying and that’s what my oncologist thinks from her lack of enthusiasm over it

I think we all clutch at straws and a lot of ladies seem to have had these tests which makes me feel I’m missing out!!

I’ll decide when I’ve spoken to her

Barb xx

Hi Barb: I got the Genome test and was told by my oncologist staff that I would be contacted by the genome company to confirm insurance coverage prior to them running the test. I was not called & my oncologist got the report within a week. Then I got a letter from my insurance company that the $6000 charge was not covered. I immediately called the Genome company based in California who told me not to worry about payment. They write off whatever isn’t covered.

I am based in Florida.

I hope that helps!

❤️🙏❤️

Oh that was lucky...things are different in UK

Barb xx

I just posted about a website called sequenceme.org. It looks like some of those companies do financial assistance.

Hi Barb I had it done when I was first diagnosed and I was told I didn’t need chemo as it was unlikely to grow. Exactly a year later they found a bone met in my pelvis so I don’t know how reliable they are.

Barbteeth
Barbteeth in reply to Scandia68

I think with anything there’s ‘no size fits all’

That must have been shocking to find out about the metastasis...the test gave you a false sense of security

Barb xx

I too had the Oncotype test when first diagnosed in 2012 and scored 17, which was low risk. In 2019 diag with MBC. Did a genome test then and found I have a gene that Piquay can work on, when the time comes. My oncologist a Sloan Kettering pushed me to do the genome test! There are many many new drugs in development. Definitely do it. BTW I had one met in my hip. They told me...since no scan bet 2012-2019, who knows how long it has been there!

It certainly did, I was willing to do it all. Mastectomy, hysterectomy and chemo. Didn’t need any of it then BAM. X

It’s a disgrace they’ve refused on that basis.

Can you appeal? On what evidence have they based this decision?

I’ve had two lines of treatment already.

I’m now on my 3rd, which is a trial based on one of my mutations. I was found to have 2 actionable mutations. The ATM gene and also the AKT gene. That’s two more options for me.

The amount of mutations that can be targeted is growing all of the time. If I were you, I wouldn’t back down. Also ask your onco to investigate any gene profiling trials. I had mine carried out for free on a trial called Prospect North East.

However, I’d of paid if I had to. Ask your onco to look into the data on genetic testing from asco2020.

I can’t understand why any onco wouldn’t be pushing for you to have it.

Good luck Barb.

Barbteeth
Barbteeth in reply to Ange0901

Thanks Ange

I’m insured with Bupa and that’s their policy

I don’t care...I’ll just pay...it may be a waste of money but at this stage in my life money is unimportant

I’m pleased having the test was of benefit for you

Barb xx

Ange0901
Ange0901 in reply to Barbteeth

It’s a small price to pay to see if you have other options.

Your life is definitely worth the cost. I really hope it’s of benefit to you.

Even if you don’t have an actionable mutation for a trial, you may find out other things about your cancer and possibly what drugs are shown to work well or not so well for your type.

Ange x

Barbteeth
Barbteeth in reply to Ange0901

Hi Ange

You’re so right

Thank you

Barb xx

I don’t think gnome testing is done in the uk for diagnosis and treatment plans, it’s certainly not done in any of the hospitals i’ve been with and that might be why your insurer won’t pay. Others in different areas of the uk might have a different experience. If you can find an area in the uk that offers it you can then challenge your insurer.

I had testing to see if I was a carrier of genes that predisposed me to breast cancer as there is a lot in the family. They didn’t find anything but the researcher told me at the time that they had only started to scratch the surface.

Barbteeth
Barbteeth in reply to Julie2233

Hi Julie

I just can’t be faffed trying to sort it out especially if the answer is still no

I really don’t need any kind of stress in my life...it’s hard enough just getting through the days

Thank you for your suggestions though

Barb xx

Barb

Genome testing was done before my treatment and was used in determining targeted therapies.

Massachusetts General Hospital partners with Dana Farber and Harvard in clinical trials. There are many options you can research.

Odd, my onco just suggested that test for the second time. I said no, the first time, even thought it would have cost me nothing. Is it the same thing. They base your treatment on your genes and/or DNA. I found out in late November of 2019 when a friend, knowing I was depressed a bit sent me a DNA kit.

To my horror, when I got the results back, I found out that my b. cert. father was NOT my biological father. I was born in 1960 before DNA results. I was born out of wedlock. My mother died in childbirth when I was four. My paternal grandmother forced my father to marry my mother (I did research and found he had filed for a marriage application to another woman that same year). After my mother died and she had no family from what we could see, (Nobody claimed her body, so catholic charities buried her.) I was put in foster care and when my Irish Catholic PATERNAL grandmother found out, she took me out of foster care (my father left my mother and I after six months of marriage). My paternal grandmother then raised me and my father never once came to visit me. Then when my paternal grandmother got cancer and knew she was going to die, she asked her brother who was married with two kids to take me in bc she did not want me going back into foster care.

So basically I knew I was 1/2 Puerto Rican by my mother and Irish by my father's side.

Got the results back and it said I was 40% European Jewish. I was sure they had made a mistake and all these DNA matches came back from paternal side and not ONE person I knew. Well, like many others who were devastated, apparently my birth certificate father was NOT my biological father. Something clicked in me and made sense. I think he instinctively knew that I was not his. Apparently, my mother was sleeping with someone else. So I am not even Irish LOL...European Jewish - 40%. Some people get more DNA from one parent than another.

A search angel (that is what they call these people who are able to help people like me that see all these 1st cousins and two 1/2 siblings from paternal side and thought the DNA made a mistake LOL...everybody thinks that.

So my onco suggested I do some kind of genetic testing bc she said based on that, there are different types of treatment that may work better than others. My insurance which is dual coverage of Medicare and Medicaid would pay for it and it would not cost me a penny but I said No, I was not interested.

She brought it up again this time and I said fine, if you think it will help (not really sure about that....I always think bc I have dual coverage and never have to pay any money) that they just look for ways to test me so that they can bill. But I said okay. So waiting for that.

I wonder if its the same thing. She said it was a genetic test and that knowing that I had 40% European Jewish (I went to a Catholic schools with Nuns my entire education LOL)... so I don't know what kind of different treatment I can have now with stage iv so I said okay. I don't see how it can make much of a difference at this point, but I will have it done. I wonder if the test you are referring to is the same thing.

Barbteeth
Barbteeth in reply to kearnan

Hi there

Well what a story!!!

I too was convent educated by nuns as my mum was Catholic...happy days for me!!

I expect these tests must be similar but I’m not totally sure

May as well have it as it’s available and may be of help

All the best

Barb xx

kearnan
kearnan in reply to Barbteeth

The Nuns in Brooklyn, NY were scary. When I went, they wore the long robes with those high hats and I swear they hated kids. For the first three years, boys were taught by the brothers, and girls by the Nuns. Then they integrated us in fourth grade with only Nuns. OMG. they pulled hair, slapped you hard across the face, I got hit with a thick wooden paddle for talking while in line for the bathroom. I had one Nun pull both my ears in different directions (PAINFUL) for passing a note in class. My old school St. Rose of Lima has now a fb forum group and its hysterical how we all remember the nuns that abused us, and the very very few nice ones. And if you got slapped by a nun at school and went home and told that you had gotten hit, you got punished a second time bc the nuns were never wrong.

Barbteeth
Barbteeth in reply to kearnan

Oh how awful...the nuns were lovely at my school apart from one and we called her ‘Sister Bugger’!!!.. bit naughty of us as she was just miserable

I got into big trouble once for plucking my eyebrows...huge crime

Our sex education consisted of not sitting on boy’s knees and not wearing perfume!!

Girls who didn’t get taught by nuns just don’t understand...at the time we thought it was the norm

Barb xx

kearnan
kearnan in reply to Barbteeth

The girls when we were like in sixth grade we were supposed to wear our skirts past our knees but we would all roll up our waists and use a belt to make the skirt shorter. The nuns would make us stand in front of the class and pull them down so hard they would be close to our ankles LOL...if you were caught chewing gum,you had to keep it on your nose all day. The boys were supposed to wear brown socks and if they were caught wearing white, their shoes were taken away and they had to walk barefoot as we changed classes. They believed humiliation was the key. LOL but unlike the kids of today, you NEVER NEVER answered back a nun if you valued your life.

Barbteeth
Barbteeth in reply to kearnan

Haha...we used to roll our skirts up but only outside the school gates!!

There was a corner shop nearby where we could buy cigarettes as well!

Barb xx

Barb I came across this today about Kisqali and liver mets and thought of you. As it is similar to Ibrance it may not be appropriate, but as it is new information I thought better send than not, even if it's irrelevant breastcancer-news.com/2020/...

Barb, I had the testing done and the company paid for it completely. I did have to fill out a financial aid form. Maybe you can check into that. Please don't let this get you down. I thought it was a bit insensitive what your oncologist said about maybe there may not be a treatment. Without the test how would you know.

Robin

Exactly...how would you know?

Anyway I’ll soon find out

Thanks for thinking of me

Barb xx

I always think of you💐

My test came back PIK3CB mTOR. That is why they but me on Afinitor and Aromasin. These were the only drugs to treat my genes. Next month I get a PET scan to see how I am responding.

Hi there

I sincerely hope your pet scan is a good one...we’re all so different...wish there was just one treatment that worked for us all

Barb xx

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