breast cancer in the family....

[snowballthecat]

Hi, 

Breast cancer is running in the family, many many members have it.

Now my dear sister got diagnosed with uterine sarcoma (leiomyosarcoma). What to do? Genetist consultant in Thailand? 

Cancer.gov advises many tests, don't know if Thailand offers these testing. 

Thank you to all in advance!

[Sheryl]

The leiomyosarcoma is not known to be hereditary.

 

Soemetypes of breast cancer though are (that is, there are hereditary gene mutations that put one at high risk for it).

 

You should find out from the relatives who had breast cancer whether their tests showed BRCA1 pr BRCA2 mutations.

 

You can get BRCA gene screening at Samitivej Hospital rinakarin, maybe other branches too, I'm not sure. It will be very costly. If you can, find out whether your family members had it.

 

https://www.samitivejhospitals.com/en/breast-cancer-screening-and-prevention/

 

And of course even if negative for the BRCA1/2 mutations you should get annual mammogram.

 

 

[snowballthecat]

Thanks , Sheryl!

 

Will check with my mother and other family members and revert to you.

 

I have read somewhere that Sarcoma happens in families with a history of breast cancer, ( Li Fraumeni syndrome) , don't know if this is reliable information. We even have male relatives with breast cancer...

 

Very shocking indeed!

[snowballthecat]

Hi, 

today I have sent an email to Samitivej asking prices for mammogram and BCRA testing....

This was the reply:

 

Greetings from Samitivej Sukhumvit Hospital.

 

 

Regarding your request, do you mean BRCA testing? If yes, our breast surgeon can prescribe the test for you. However, we could not layout the definite blood test or treatment options and price for you until you have been assessed personally by our specialist. The treatment plan depends on each patient’s condition and the estimate price will be given on a case to case basis. 

 

We would like to invite you to come in for an initial consultation with our specialist at your convenience, the doctor will advise you the appropriate treatment plan after the assessment.

 

 

I wonder why so secretive?

All  other hospitals give you prices on the spot....Maybe this one is particularly expensive?

 

 

 

 

[Sheryl]

This is a typical response in my experience. They will not do the test unless a doctor orders it and they don't know what else the doctor may order as well, nor which doctor you will see, so cannot give a quote. In addition it is a test done infrequently so would not appear on standard lab price lists.

 

Samitivej is an expensive hospital but no more so than Bangkok Hospital, BNH Hospital or Bumrungrad.

 

Have you ascertained that your relatives had the BRCA mutation?

[snowballthecat]

 

I see, thanks for your input, Sheryl... I may book an appointment in Samitivej when I go to BKK....

 

Phoned also Bangkok Hospital in Phuket, super -expensive for mammogram!! Around Bath  7000 Very funny when they asked "do you want one breast or both breasts?". (choice)

 

I have asked my mother, she sent a patology report, does not mention any genetic testing for breast cancer. (mastectomy).

 

Now I have to ask my sister for a report of the uterine leiomyosarcoma, to see what testing was done, if any.

 

This will be useful also in the search of a clinical trial, as some doctors in the US already asked if she tests positive for EBV?

 

 

 

[suzannegoh]

On 11/24/2018 at 3:46 PM, Sheryl said:

The leiomyosarcoma is not known to be hereditary.

 

Soemetypes of breast cancer though are (that is, there are hereditary gene mutations that put one at high risk for it).

 

You should find out from the relatives who had breast cancer whether their tests showed BRCA1 pr BRCA2 mutations.

 

You can get BRCA gene screening at Samitivej Hospital rinakarin, maybe other branches too, I'm not sure. It will be very costly. If you can, find out whether your family members had it.

 

https://www.samitivejhospitals.com/en/breast-cancer-screening-and-prevention/

 

And of course even if negative for the BRCA1/2 mutations you should get annual mammogram.

 

 

FWIW, BRCA1 and BRCA2 testing cost 60,000 Baht at Bumrungrad Hospital in BKK last year.  The way that it worked was the hospital drew blood and sent the blood sample to an outside lab in the US. 

There were a couple of different options with that test, with it being cheaper from some labs than others.  If I recall correctly there is some issue with there not being a worldwide database of results and that may cause some labs to interpret your results differently than others.  In my case insurance paid for it despite the fact that I was using an expensive hospital and an expensive lab, but that was not a Thai policy and my insurance would cover BRCA testing only if you fit a certain profile. 

As to whether it's a good idea to get the test, that's a more complicated question than it might initially appear and is something to discuss with your oncologist.
 

Edited December 18, 2018 by suzannegoh

[suzannegoh]

On 12/14/2018 at 6:10 PM, snowballthecat said:

I wonder why so secretive?

All  other hospitals give you prices on the spot....Maybe this one is particularly expensive?

It might not be secrecy so much as that they don't want to do anything without examining you and learning all the details or your and your family's medical history.  Aside from expense, one reason not to take the test is statistical - if you are in a very low risk category then if you receive a positive result on the test it would be more likely to be a false positive.

https://health.usnews.com/wellness/articles/2017-01-05/why-most-women-shouldnt-undergo-brca-testing-for-breast-cancer-risk

Edited December 18, 2018 by suzannegoh

[snowballthecat]

3 hours ago, suzannegoh said:

FWIW, BRCA1 and BRCA2 testing cost 60,000 Baht at Bumrungrad Hospital in BKK last year.  The way that it worked was the hospital drew blood and sent the blood sample to an outside lab in the US. 

There were a couple of different options with that test, with it being cheaper from some labs than others.  If I recall correctly there is some issue with there not being a worldwide database of results and that may cause some labs to interpret your results differently than others.  In my case insurance paid for it despite the fact that I was using an expensive hospital and an expensive lab, but that was not a Thai policy and my insurance would cover BRCA testing only if you fit a certain profile. 

As to whether it's a good idea to get the test, that's a more complicated question than it might initially appear and is something to discuss with your oncologist.
 

Thank you, Suzanne!

 

I started to think that perhaps it is not a good idea, costs aside, in case it comes back positive....can you immagine the implications on one's daily life?

 

Interpretation of the results also an issue? Devastating! 

 

 

 

 

[Sheryl]

26 minutes ago, snowballthecat said:

Thank you, Suzanne!

 

I started to think that perhaps it is not a good idea, costs aside, in case it comes back positive....can you immagine the implications on one's daily life?

 

Interpretation of the results also an issue? Devastating! 

 

 

 

 

Your mother will have been tested for the gene. It is a separate report from the path report. She should ask her doctor about it. You should also ask the other family members who had breast cancer.

 

Knowing whether  close relatives with breast cancer had the BRCA mutations would be a key factor in decision to test you or not.

 

 

[snowballthecat]

...then we will call the doctor together, when I visit my mother. Will ask other family members is this BCRA is a common test. 

Thanks!

[snowballthecat]

UPDATE ABOUT GENETIC TEST:

Went back to my country, saw my mother, phoned her gyno doctor who operated her  breast cancer  bak in the 2000. The doctor was retired but he picked the phone. He said that "For sure, I have not tested your mum for gene mutations". 

So, I carried on. Went to my gyno, did the annual mammogram/ultrasound  and Smear test (all clear) , talked about my concerns. 

To my surprise, she referred me to an oncologist and to a geneticist, saying "this is the praxis here".

The oncologist, who happened to be the oncologist of my sister,  did not see any relationship between my sister' leiomyosarcoma and the breast cancer history. 

He sent me to the geneticist. And then, all these thousands of questions came. I brought my mum to the second consultation as the questioning was spaning 4 generations up and down....a real genealogy tree. 

The geneticist said that we have indeed so many cases of cancer in the family. A group of cancers: breast cancer, pancreas, colon cancer, prostate cancer.  etc, so it was well justified to study any mutations for BRCA1 and BRCA2. 

The lab test is carried on in the country by molecular geneticist and the health insurance cover it, no need to justify anything. Initially she requested  a selected panel of genes (not a complete panel), for my ethnic group. Results will be ready in 30 days. 

The genetist doctor also said that in the US these testing can be easily done for USD 200-250, which is way lower than the prices in Thailand I heard in this forum.

We do have a cousin who had a masectomy at 39 y.o. in the US, where she works as a medical doctor. This cousing has been tested 2 years ago for all gene mutations known, and all test came back as negative. 

Now her doctors are saying that It must be a gene mutation running in the family but we don't know which one (?).  Then they said " You  are an interesting family to study."

Absurd. 

I feel so  shocked, as if I don't know where I am standing.....Does it make sense to you? Any experiences out there?

THANKS A LOT!

 

 

 

 

 

[Sheryl]

Yes, it makes sense. But I suggest you take it easy and wait for the results. Even if there is a gene mutation in the family it does nto necessarily mean you have it yourself.