Gene Mutation?

Hi MarmiteFan59, my situation is slightly different to yours and I've kept it brief in case it's not relevant but it might be helpful.   

Aged 49 (considered young by the hospital and I'm definitely not overweight (actually quite slim) which led them to do genetic testing) I underwent a full hysterectomy for suspected ovarian cancer.  

Diagnosis: Stage 1c2 ovarian cancer (grade 2).  Endometrioid epithelial.  

The oncologist when providing me with my results and prognosis informed that I also had Stage 1a endometrial cancer (stage 1).  

I was diagnosed with two separate cancers on the same day but neither cancers had spread. 

I have been tested after my hysterectomy for Lynch Syndrome (result negative) and for BRCA (also negative). 

In my mind there was no question about it I wanted to be tested.  I don't have any children but I have a sister and she has two daughters and I have female cousins.  I owed it to my family to be tested and if I had tested positive then they would also be tested.  

I am the kind of person that does not bury their had in the sand.  If there is an issue then far better it is dealt with. 

If you don't mind me giving you my opinion it would be for you without a shadow of doubt to opt for as much genetic testing as they will offer you but definitely BRCA and Lynch Syndrome.  I hope your results are negative but if they are positive it then means your family can be tested and whilst I hope they are negative if they are not they can be pro-active regarding what they need to do which will probably include more screening so if they ever (and I hope they don't) develop cancer it will be caught at an early stage and can be dealt with.   

This is a lovely forum and we're all here for you MarmiteFan59 xx 

* oops I meant to say grade 1 with my endometrial cancer.  It is stage 1a (and grade 1).  

Hello MarmiteFan59,

I had my hysterectomy on 25th May last year. I was also told that it could be a genetic reason. I have had a lot of cancers in my family on my mothers and fathers side, my father died of stomach cancer in 2012.

I had my 1st appointment with a genetic counsellor last Thursday. He went through my family history and explained why they thought it could be a genetic reason, something to do with a test that was done at the time of my operation (sorry can't remember the name he used). The result showed that I may have a condition called Lynch syndrome. He then explained the same thing that has been said to you, that it could affect other family members. He asked if I would agree to genetic testing . I then signed a consent form and had a blood test on Friday as this is the 1st stage of checking for this syndrome. A positive result means that any brothers, sisters and children will then be tested. It also means that there will be tests such as colonoscopy's done every 2 years for anyone affected. I don't know what the other tests are yet as that will be explained if I get a positive result. I have been told my results will take 4-6 weeks. I think having the test is better for me as it will then pick up any member of my family who would not have known if they were at a higher risk of developing cancer.

I hope this will help you. Sending you a Hug and my Best Wishes xx

Hi MarmiteFan59. After my hysterectomy I was also told of a mutation they found during the histology- that might be linked to Lynch syndrome.  

My oncologist thinks it quite unlikely, as my father was over 80 when he was diagnosed with bowel cancer and she would have expected this to be much earlier if it was a genetic cause.  My grandmother, on my mother’s side died of stomach cancer, aged 61.  
I received a form to fill in as the first stage - I had to list all family members and any cancers.  This did not take long, as I also have quite a small family and I have returned it to Guy’s and wait for their thoughts or further tests

i actually feel forewarned is a huge benefit - I have 2 daughters and 2 grandsons - if there is a genetic link then my daughters would have the option of perhaps opting for a hysterectomy, maybe when they reach menopause - certainly they would be able to access regular testing.  I feel quite reassured by this and my daughters feel the same, particularly as they have seen how quickly I recovered from my hysterectomy.  They certainly know that they must act immediately if they have any unusual bleeding.

Take care - hope you are doing ok x

Hi MarmiteFan59  Some time ago a member said that having had genetic testing could also open up the possibility of more alternative treatments in the event of recurrence. 

I was told that genetic testing of the cancer once removed was automatic and done at the same time as the staging - thankfully mine was negative, despite so many cancers in my close family (seven different types). They said that if a genetic factor was found I would be offered genetic counselling and testing for my children. 

Different hospitals must do this differently. I had to list all the cancers in my family before I saw my surgeon pre-op.

What a worrying time for you, but, as others have said, it's better to know these things for the sake of our family. We are blessed that science is able to do this for us to save others. Keep smiling - you are a very brave lady.

Hi Lesley Ann, this is likely a bit of a different scenario: my original thing was a tiny polyp removed at my hysteroscopy that was found to be cancerous. So when I had my hysterectomy, the area they were focussing on was the area near the polyp - and a few cells were found on top of the cervix. The STICS in the fallopian tubes are precancerous and would have travelled and led to ovarian cancer. They’re not connected to my endometrial cancer, Anyway genetic testing means a blood test so I will then know what’s what.

Hiya

I found this as was intrigued as to what STIC meant:

Serous tubal intraepithelial carcinoma (STIC) is a precursor lesion for high-grade pelvic serous carcinoma. The incidence of STIC is estimated to occur in 0.6% to 6% of women who are BRCA positive or have a strong family history of breast or ovarian cancer,

.Serous tubal intraepithelial carcinoma (STIC) is a rare pathologic finding at the time of benign gynecologic surgery. It arises in the distal fimbriated end of the fallopian tube and likely represents a precursor lesion to high-grade pelvic serous carcinoma.

Please ask your Oncologist though and don't take this as it.

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