GENE TESTING
Just a thought. If, like myself, you are diagnosed with bilateral breast cancer (Stage 2), wouldn't it make sense to have a BRCA1 or BRCA2 gene test done prior to any surgery? My radiation oncologist - seen a few weeks after surgery ordered the test prior to radiation treatment and now the results are holding that up. The frustrating part is... if I do have the gene, then radiation therapy is useless and I may need to consider a mastectomy! Would it not be much more prudent to have the testing done first in order to avoid "unnecessary" surgery and all that goes with it? The whole process has all felt quite rushed (although the team has been great throughout) and now this is adding to it all - potentially unnecessarily.
BraOVO Test and Payment
Hi Lovelies, It has been a while since I have visited the forum. I hope that everyone has been able to take some time to rest and reflect over this crazy festive season. My question is for those that have had genetic testing - I am having the BraOVO test via www.genomicdiagnostics.com.au I really just want to know if you were provided with an invoice? The company has phoned me for payment, however they do not provide an invoice, payment is only available via CC over the phone or on their website. I don't have a problem with the cost itself, I am just paranoid about being scammed. My test was done at S&N. ThanksTo remove ovaries or not ??
Hi I got diagnosed with BC late last year aged 47 .Had lumpectomy in January this year followed by radiotherapy.Now on Tamoxifen.Had a Mirena in place for heavy periods which I had removed at the oncologists recommendation.Fast forward 5 months on Tamoxifen and having periods from hell! Saw gynaecologist yesterday. I need to make a choice between endometrial ablation or full hysterectomy with removal ovaries. My grandmother died of ovarian cancer at 54 years. I’m waiting on genetic testing result but as I understand even if negative it’s no guarantee as we still have a lot to learn about genes. Mum had full hysterectomy about my age ( no cancer found) but was able to take HRT for 7 years.So I’m really trying to weigh up the risks and benefits . Any advice/ experience would be appreciated I have changed my decision a few times already Thanks in advance x -
DCIS genetic testing and Tamoxifen
Hi everyone, I’m new to the group :) . I’m 48 and I was diagnosed with high grade DCIS in March 2020. I had surgery and I’m just over half way through Radiotherapy. I am trying to decide whether to have private genetic BRCA Testing (Medicare advised they won’t test due to no prior family history of breast or ovarian cancer- mum did pass away at 35 of cervical cancer but apparently isn’t hereditary). I know the results can be inconclusive, but just wondered if anyone has undergone testing and if they could give any insight or advice. My specialist has also discussed the possibility of me taking Tamoxifen preventative cancer treatment. I am a little concerned of the side effects, In particularly clots in the lungs and legs. Just wondered if anyone out there has any advice. Thanks :)
So I have BRCA 2 mutation 🙄
I'm coming up to 12mths post chemo. 18mths post double mastectomy. 6mths post oophrectomy (ovaries out) after my IDC diagnosis after self detecting a small lump at age 46. Genetics is obviously something they put on a back burner during all this process but my sample was sent to the US after my recent genetics appointment. Results are in BRCA 2 identified.. I have mixed feelings tbh. First thought..oh my kids! Please don't let my family endure anymore elevated cancer risk. I have 3 children 2 daughters and a son i guess the chances are one of them does at least.. Then thank goodness i opted for a double mastectomy, and i chose to remove to remove my ovaries also. It looks like my risk of other cancers is also elevated now. Sometimes i really wish i could go back to the good old days, pre cancer! Oh how sweet was life! Today i have to talk with them about getting tested. 😕 but knowledge is power they say. Thanks for listening 💜
CHEK2... my genetic plot thickens?
Today I went to have genetic testing for the CHEK2 gene mutation. Simply put the CHEK2 gene regulates cell division. If it's mutated the cells go on dividing and, well, cancer. It's also linked to increased risk of prostate, kidney, colon, thyroid, lung, some brain cancers and osteosarcoma. With breast, it's indicative of an increased risk in the moderate range if no first or second degree relative has it, if both have, as in my case, it's an increase in risk of 44%. Well aren't I glad I've had a bilateral mastectomy... And interestingly it has a direct correlation on the effectiveness of some of the breast cancer chemotherapy drugs. If I do have the CHEK2 mutation, I had the right chemo. I checked. Can you imagine how I'd feel if the chemo I'd had was the wrong one?? Holy f**k... So my remaining sister is trying to decide what to do with her breasts. As the only woman in two generations not to have breast cancer, this is of course a major consideration. She found her way to a private clinic and had a genomic test and didn't have the CHEK2 mutation. My mother had the same test and did have it. It's quite a rare mutation. My deceased sister didn't do this test, so I'm the last piece in this jigsaw puzzle. If I do have it, my sister is somewhat more in the clear than if I didn't. The genetic counsellor today said that he'd be very surprised if I didn't have it. He's also fairly convinced that my deceased sister had it based on some previous health issues. It's a spit test. I had to fill a vial with saliva, and now it will wing its way to San Francisco. Faster and cheaper than doing it at Peter Mac (sad). I'll find out in early November. The geneticist said that it would have combined with other unknown genetic factors to cause my BC, something that accords with Peter Mac's assessment of a polygenic cause earlier this year. If I do have it I'm uninsurable (for life insurance), but that ship has sailed anyway. As my kids reach adulthood they'll have to think very carefully about how to proceed. Along with the CHEK2 test, he's testing a large number of other genes (61 in total). I thought about it when he asked me if I wanted to do the full panel. In the end I decided that if I'm in for a penny I may as well be in for the pound. If I can catch some other health drama early and/or head it off at the pass, I'd like to. Knowledge is power etc. If I do have it, well I suppose I'll have to have a good chat with my oncologist about how to screen, or not, what precautions I have to take etc. I don't suppose it'd qualify me for a subsidised MRI. That'd be too much to hope for... This (of course...) has been very stressful. It's probably contributed to my high anxiety week. As I was finishing the ExMed workout today my sister rang to change a complicated arrangement, it got mildly contentious and she hung up on me. Which I hate and, of course, burst into tears. FFS I'm a 52yo woman! Not some angst ridden teenager with pmt! I just can't cope with the slightest derailment at the moment. I simply don't recognise myself. I'm embarrassed writing it here yet again. I won't anymore. Just presume I'm weeping on a regular basis... And now I'm consoling my still wet eyed self with a café lunch and there's a revolting couple refusing to control their toddlers who are literally screaming, running around and banging on the windows. When my kids were that age if they behaved like that they were packed into the pram and taken home. I only had to do it once with each kid. They never did it again because I don't do empty threats. Hurrumph. I am grumpy as f**k.
Genetics Appointment
I have an appointment to see a genetic oncologist type person tomorrow. The generations in my family are all over the place (some of my first cousins were older than my parents) and I don't know much about what people died from (cancer being a dirty word) and have no-one to ask. Due to this, I'm fairly sure that I will not qualify for any subsidies on genetic testing and cannot afford to pay for it up front. However, as my sister was diagnosed at 32 and died at 45 from an early detected breast cancer, I am very keen to know what the likelihood of it being genetic is, and what that means for treatment for me. Has anyone been in a similar situation and what was the outcome? Does anyone have any insightful questions for me to ask?
Genetic testing ....
Hello, I have maybe a stupid question but it is in my mind and it drives me crazy to think about it and think about it. I was diagnosed with breast cancer last year in Juli. My mum was diagnosed 3 years ago, but with a different type. Is it likely genetic because we had both breast cancer or unlikely as we had different types ? Don't know if I can explain it right .... any suggestions ? Thanks Micha
Update - Good News and Next Stage
Here it is the first day of Sept and I am looking both forward and back. After diagnosis early in the new year, I have had 6 months of chemo (AC and paclitaxil), some surgery (5 nodes removed and lumpectomy on affected boob) and I've just started my regimen of tamoxifen. Chemo was ok. I can't say it's enjoyable but I would do it again if I had to. It caused my tumor to shrink from 5cm to nothing in less than 6 months and the biopsies were all negative for cancer at the end of it. No spread detected at any time thank goodness and my genetic tests were clear for any of the known breast cancer genes. The worst part of it was actually coming down with shingles in the last month of chemo. Gotta tell you that sucker hurts big time! In my future I have a ct scan next week, in order to prepare for about 4 weeks of daily radiation. Then hopefully I get my life back. I really hope tamoxifen isn't as horrible as people say, but in any case I will endure. I am so thankful for the treatment. Peter Mac has been largely amazing, apart from a couple of examples of severe communication and organizational failures which meant over 4 hours of wait time for me in one instance and about the same for my surgical team on surgery day. They were very unimpressed. So here I am technically cancer free. I feel very very lucky.