triple negs: experience with genetic testing?

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Lisa8
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Re: triple negs: experience with genetic testing?

Postby Lisa8 » Wed Mar 16, 2011 6:29 pm

LML, how did you go with your genetic counsellor appointment? Hope you got some answers :hugs:

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Re: triple negs: experience with genetic testing?

Postby Lisa8 » Wed Mar 16, 2011 6:23 pm

Thanks for letting me know about the rads Fina.

I know exactly what you mean about the emotional roller coaster a positive BRCA diagnosis brings. The only way I can deal with it without going crazy is to deal with each step one at a time. I got my positive genetic results after I finished treatment. I took 3 months 'off' without thinking about it, then found a lump in my remaining breast during routine mammogram. After a few weeks wait and another core biopsy I found it was benign.

That freaked me out so I made my appointments with 2 PS and chose to have reconstruction with expanders and prophylactic mastectomy. Then I had implant exchange in Jan. This whole process as taken 2 years and it is only now I am contemplating another child before my ovaries come out. I am also going to a menopause clinic next month to discuss how I will tackle that when the time comes. I am finding it really scary.

There are times when everything is smooth sailing and I don't even think about bc or my genetics. Other times it's all I think about. Sending you hugs :hugs:

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Re: triple negs: experience with genetic testing?

Postby LuvMyLab » Tue Mar 15, 2011 5:05 pm

Gosh, it's overwhelming thinking about all those things. Thanks for the heads up though, as I'm off to the counselling session tomorrow to see if I should get tested, it really has been freaking me out too.

Try to think about things in isolation perhaps, so firstly yourself - gather all the info on risk of recurrance, ovarian cancer etc and make your decision based on that and what you're heart tells you.

I know it's hard as all the issues that come with it are intermingled and affect each other.

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Re: triple negs: experience with genetic testing?

Postby After BC » Tue Mar 15, 2011 4:58 pm

Lisa8 - So what they are concerned about is radiating breast tissue of those that have the BRCA mutation. having rads after mastectomy apparently is OK since there is minimal breast tissue left.

Even though I am glad to have done the genetic testing done I don't think I was mentally ready to hear the results.
I bawled my eyes out for the whole consult with the geneticist/onc. The reason I wasn't expecting the results was that I have a huge family. My dad has 10 siblings and my mum has 5 sibilings with too many adult cousins to count. Only 1, paternal aunt died of BC in her 40s. In my mind there would have been more family members affected if it was genetics??? I'm also asian/chinese which made it even more unlikely! I guess these things don't discriminate.

Anyways knowing my results was and is very overwhelming!

Not only do I have to think about the cancer I have NOW and all that is associated such as my next treatment, rads and focusing on getting through it, metastasis, local recurrence. I also have to think about FUTURE cancers and my increased risks of getting contralateral breast cancer, doing vigilant monitoring using MRI vs prophylactic mastectomy. PLUS think of ovarian cancer in addition to breast cancer. Worry there are no diagnostic tests to catch it early! PLUS think about my fertility, screening embryos for mutation even though I'm not married, wedding had been cancelled due to dx. Which means i need to get married and have all my kids by 35 so i can remove my ovaries. Think about menopause. Furthermore i have to worry about my sister, which she may or may not have the mutation 50/50 chance. PHEW! There is ALOT of things to think about. Don't underestimate how a positive result will affect you mentally. So my advice to all you ladies getting genetic testing is .. be prepared!


Will keep you guys updated on what I decided to do. Since i just had LB mast i'm thinking of getting prophylactic mastectomy on my RB and recon done on both sides. I will have to wait one year though coz i think i will be doing rads and the skin needs to heal? i'm very worried of getting BC in the other breast in the meantime. I was thinking of doing thermography in between MRIs, apparently it can detect pre-cancerous cells...not sure what my BS think of these newer technologies but mammography is 50 yr old technology surely there needs to be newer imaging techniques without radiation exposure.
Dx Sep 10, Triple Negative, neoadjuvant chemo 6x TAC. Left breast mastectomy 0/5 lymph nodes. Complete pathological response. response. Currently having 26xrads

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Re: triple negs: experience with genetic testing?

Postby Blizz » Sun Mar 13, 2011 10:58 pm

That was so quick Fina to get those results.

Sorry to hear you tested positive for BRCA1 :hugs:

I won't know for quite a while whether I will too, but I more or less expect to. My medical teams certainly seems to think so.

Please share what recommendations your medical team will make and what your next steps are - I am very interested to hear.

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Re: triple negs: experience with genetic testing?

Postby LuvMyLab » Sun Mar 13, 2011 10:16 pm

wow, I've never heard that either. Sorry to hear that AfterBC, but I'm sure you're thankful that you made the right decision. I have a session on Wednesday to see how high my risk is.

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Re: triple negs: experience with genetic testing?

Postby Lisa8 » Sun Mar 13, 2011 10:01 pm

Sorry to hear that you are BRCA 1 positive. :hugs:

I have never heard about rads not being given to people with BRCA mutations. Too late for me now!

Hugs,

Lisa

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Re: triple negs: experience with genetic testing?

Postby After BC » Sun Mar 13, 2011 4:34 pm

I got my results back and I'm positive for the BRCA1 mutation. :mad:
Took me by surprise as i had not expected this at all !!

I had decided on a mastectomy beforehand and the results of the genetic testing confirmed that I made the right decision.
A disturbing bit of information was relayed to me by the geneticist/oncologist - rads (that is done after breast conserving therapy) is not recommended for ppl with the BRCA mutation as their breast tissue is more sensitive to the rads. I did not know this and if i had been following my surgeon's advice and had opted for a lumpectomy/rads i would be pretty p**ssed off.. :grr: :grr:
Dx Sep 10, Triple Negative, neoadjuvant chemo 6x TAC. Left breast mastectomy 0/5 lymph nodes. Complete pathological response. response. Currently having 26xrads

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Re: triple negs: experience with genetic testing?

Postby hibiscusmum » Thu Feb 17, 2011 9:55 pm

even if I don't have the BRCA genes the results would not be negative but undetermined.
Yes that is right I was told that too. I am still wondering if I should have had a mastectomy.....

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Re: triple negs: experience with genetic testing?

Postby After BC » Thu Feb 17, 2011 7:53 pm

Hi Blizz,

I think genetic testing is very important on many levels. I've met with a genetics counsillor a few weeks ago to help me decide in choosing a lumpectomy or mastectomy. I'm 29 with TNBC and there is no history of cancer on my mum's side. My paternal aunt died of BC in her 40s and the other 4 out of 6 sisters had uterine cancer. I'm still awaiting my results but the testing would have only taken a month (this is very fast as i understand it from ppl's post). From the way it was explained to me even if I don't have the BRCA genes the results would not be negative but undetermined. Meaning there could be other genes involved that we don't know about. If testing turned out positive they would probably suggest prophylactic mastectomy and also think about removal of ovaries by mid-30s or after i'm finished having children.

The counsellor also mentioned we could test embryos to prevent passing on the BRCA mutation to our kids. I was very shocked that we could do this... sounds very 'gattaca' to me. But since i've frozen down some embryos before my chemo this is a possibility.
Dx Sep 10, Triple Negative, neoadjuvant chemo 6x TAC. Left breast mastectomy 0/5 lymph nodes. Complete pathological response. response. Currently having 26xrads

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Re: triple negs: experience with genetic testing?

Postby Blizz » Thu Feb 10, 2011 4:17 pm

Thanks everyone - reading your replies I think it is wise to get tested.

For the moment I have mentally put it on my 'next page' of things to deal with / consider / act on after chemo.
The referral is done, so all we can do now is wait anyway.

One thing at the time :)

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Re: triple negs: experience with genetic testing?

Postby Lisa8 » Wed Feb 09, 2011 6:35 pm

Hi blizz,

I was dx with triple negative bc at the age of 30. My mum had ovarian cancer and passed away at 48, so I suspected genetics may have been involved. After my bc treatment I had genetic testing done. I was told the results could take 6 months but I got them back in 3 months. I am positive for BRCA 1 &2. I have since had a prophylactic mastectomy and breast reconstruction with expanders and finally implants.
I am 34 now and will try to have a baby this year. At the age of 36-37 I will have my ovaries and Fallopian tubes removed.
I am very happy to know my BRCA status as I may not have taken the further preventative surgeries which could save my life. I have a son, but it is still important to know if he has the mutations for future generations.

Lisa :hugs:

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Re: triple negs: experience with genetic testing?

Postby hibiscusmum » Tue Feb 08, 2011 10:43 pm

Hi Blizz,

I'm triple neg & 41 years old with 9 & 2 year old girls & have had the testing.

The only history of BC is my paternal grandmother. I do have quite a bit of cancer history in my family, but because only my PGM has had BC & not Aunties they said that it would be highly unlikely that I would carry the BC Gene.

They were right I do not carry it, but my girls will have to checked from the age of 30 (because of my age)

My testing only took a few months, because they fast tracked it, only because they wanted to make sure that it was negative before radiotherapy, as it would have jeopardised any surgery if I had already had radiotherapy.

HM

P.S. best of luck

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Re: triple negs: experience with genetic testing?

Postby Urthgirl » Tue Feb 08, 2011 9:49 pm

Hi Blizz,

I have triple negative bc aswell and have tested positive for the BRAC gene. My paternal grandmother and her mother both had bc, so along with that and the fact I too was 34 when diagnosed with bc I was urged to have the testing.

As I was the first one in my family to have the testing it took up to 5 months before my result was given too me. This set a snowball effect into motion with other members of my family getting tested aswell, namely my two sisters who have both tested positive aswell for the gene, however they did not have to wait as long for their result because as they told me they now know what they are looking for. I too am anxious as to whether my daughter carries the gene aswell, she is only 3 so will not be tested to she is older, heres praying for a damn cure.

bron

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Re: triple negs: experience with genetic testing?

Postby mdobson70 » Tue Feb 08, 2011 9:41 pm

I am not triple neg but am being referred for genetic testing as my Mum has breast cancer and I have 3 daughters one of whom is 15yrs. Didnt realise it took so long to get the results.
Dx Nov 2010 extensive DCIS, Dec 2010 Lumpectomy (no clear marg), Jan 2011 SNB (nodes neg) RB Mast
Grade 2 IDC ER+PR+ HER2-, Tamoxifen 5yrs


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