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Genetic breast and ovarian cancer Genetic breast and ovarian cancer

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  #1  
Unread 01-23-2003, 08:50 PM
Genetic breast and ovarian cancer

Hi everyone
I have posted a longish message on the Hyst Options and Alternatives Forum as I am new to this site and was not sure where best to post my question. I will give you a brief summary here but if anyone is interested/is in a similar situation or has any information it would be great if you could read my longer posting in the other Forum as that has heaps more info about my situation.
I am 47 and was diagnosed with breast cancer nearly one year ago. I have a very strong family history of breast cancer and have been to a genetic cancer centre. Very likely that there is a gene mutation but I do not have my test results yet and probably won't get them for at least another year.
My doctors (oncologist, geneticist, gyn-oncologist and breast surgeon) all have recommended that I have a prophylactic BSO (booked for 13 Feb). The gyn-oncologist has suggested I also consider having a full hysterectomy at the same time (hopefully vaginally) - but the other doctors do not think this is necessary. I am not sure about the hysterectomy and just wondered if anyone else had been in a similar situation or had any information about approaches taken. I am in Australia and my oncologist feels that it is not necessary and not common practice here but that it is in Canada. Any information would be of use - as I am feeling confused and need to make a decision soon. Thanks.
I have found this site really useful - so many wonderful women. You are all an inspiration.
Cheers
Janet
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  #2  
Unread 01-23-2003, 09:21 PM
Genetic breast and ovarian cancer

Janet
What a difficult decision you have to make. I hope someone comes along that can give some first hand advise....
A lady from my church had breast cancer and decided to have a bso as a precaution. This was about 14 years ago. She was in her early 30's at the time, with two young children. Her mother also had breast ca and because of the genetic link (there wasn't genetic testing available, but there was an apparent link) she had the ovaries removed. She is doing fine today.
I hope you are able to come to a decision and find peace with it. Take Care, Chris
  #3  
Unread 01-24-2003, 07:16 AM
Genetic breast and ovarian cancer



On the other hand...

My mother and her sister both had breast cancer, pre-menopause. Although my doc is aware of this, it was thought that due to my age (28 at the time of hyst), it was better to leave ovaries where they were.

Funny though, sometimes I have second thoughts about that decision - I suppose I've procrastinated going for genetic counselling, and I know I really have to go and get it done.

Anyway - good luck whichever way you go - and here's praying you remain healthy
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  #4  
Unread 01-24-2003, 07:43 AM
Genetic breast and ovarian cancer

One thought about genetic testing.....be careful. There is no legislation to protect you from discrimination because of a possible future health problem. My doc told me that since my dad had colon ca that I could and my children could be tested.....but prefixed it with.....it does not fall under the ADA (Americans with disability acts) and it could cause problems with jobs, insurance.....ect.....Also a genetic link does not quarantee you will get it....it give you a predisposition for it. I have opted not to do the testing and have gotten a colonoscopy (all clear) and will follow up with testing as the gastro doc advised.
  #5  
Unread 01-24-2003, 03:22 PM
Genetic breast and ovarian cancer

I have a friend who has breast cancer. After she finishes her chemo treatments and recovers her doctors have recommended that she has a hysterectomy with ovary removal. Her cancer is estrogen dominant. This is the reason why they plan to do it.
  #6  
Unread 01-24-2003, 03:46 PM
Genetic breast and ovarian cancer

s Janet

I can't offer any advice on the surgery decision. I don't envy you.
However, as far as the genetic testing, here a wonderful website you should check out. It is called FORCE> facing our risk of cancer empowered. I had the priviledge of hearing the founder of this organization speak. Genetic testing is amazing, but loaded with ramifications. Good and Bad.
I hope you find it helpful.

http://www.facingourrisk.org/

karenann
  #7  
Unread 01-24-2003, 03:48 PM
Genetic breast and ovarian cancer

Hi Janet...

Mind boggleing is the term for all of this.
My mom had breast cancer 27 years ago, had a mastectomy, took oral chemo( whatever they were giving at that time), and is still alive and well telling her story to all. Thankfully her cancer never spread and all was well. However, every time I went for my mammography i dreaded it. Just that fear of the unknown. Also my mom was only 48 when all this happened to her so when I hit my48th birthday i literally freaked out when it was time for my annual mammo. All was fine.... BUT

When I was 51, last year, I did develop ovarian cancer. I have been told that ovarian cancer is the sister cancer to breast. Well, to make a long story short, I had a hysterectomy and underwent chemo. I am doing great now and am in remission according to my oncologist.

Just last week I again went for my mammography and of course, freaked out...I was actually scared to death to get the results. The technician doing the test saw how nervous I was and assured me that one thing had nothing to do with the other...I still did not believe her.

The next day, when I got the results I was able to breathe again when everything came back normal.

You have a difficult decision to make and I would strongly weigh one thing against the other and really make sure that your decision is right for you.

keep in touch
Rosalie
  #8  
Unread 01-24-2003, 06:59 PM
Genetic breast and ovarian cancer

s Rosalie

I'm glad you did not believe the technician who tried to tell you there is no link between breast and ovarian cancer. There is actually a triangle which consists of breast, ovarian and colon cancer. We need to be on the lookout for the other cancers as well. And you are right, it is scary. I hope you educated that technician.
Glad you mammogram was good!!! I have mine in about three weeks.

karenann
  #9  
Unread 01-24-2003, 09:28 PM
Genetic breast and ovarian cancer

{{Janet}}

I don't envy your position at all!!! In that area, I'm real glad any decisions I had to make became no brainers.

I had my surgery almost three years ago also for Ovarian cancer, I was told at the time that it was linked to my mom's breast cancer. We actually both originally developed them at similiar ages, I was 38 when I had my surgery. Karenann, you're so right about the triangle, I was told about that when I was told I needed to have a Colonoscopy.

Anyway, Janet, one of the things I found out when I first requested my blood work done was that there are some insurance companies that won't cover genetic testing. Some will cover it but have VERY specific guidelines that have to be met first. Mine for instance required that two immediate family members had cancer. Their "definition" of immediate was mother, father, sister or brother, period. No grandparents, aunt, uncle or cousins.

I wish you the best on your decision and hope that you'll be able to make a decision that you're comfortable with. I hope you are doing well with your breast cancer. Let us know how you are doing and how things are going for you.

{{Hugs}}

Vicki
  #10  
Unread 01-25-2003, 08:45 AM
Genetic breast and ovarian cancer

janet , Your story sounds similiar to mine. I had a diagnosis of Breast Cancer on May 1. On July 8th I had a lumpectomy and radiation treatments started September 1st. Meanwhile, I was genetically tested and came back positive for the BRAC 2 gene. So I elected to do a prophelatic hysterectomy with removal of the ovaries and falopian tubes. This was done last Wednesday. Thank god I did. Turns out I have Stage II ovarian cancer. I start chemo therapy next Friday. I'll go once a week for a couple of weeks. Very scary, but better to find the cancer earlier than later. I have been tested up the ying yang for ovarian cancer since May. Blood tests, ultra sounds, pelvic examines. Everything came back negative!!! I have a strong family history of both cancers, which is why I decided to do it.

Good luck with your decision. It isn't an easy one.

Barbara
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