My Ovacome
10,070 members12,430 posts

I'm so sorry

It sounds like you are going through hell. I wish I could say something to help,but my wisdom is low right now. It probably always is. 

I didn't get what you have, specifically, only that surgery is a must. Obviously you have to start somewhere, then you take it day by day, watching your labs and making a pest of your all test and lab results. Get a copy of everything for your records, question the nurses. It will give you some sense of power and make you more knowledgable and involved. Look up everything you don't unfpderstand. Be your own advocate.

If  +. BRCA runs in your family, it's not your fault! It's just the way it is. You're not being punished for anything. 

I don't have children, so I can only guess at your anguish about your daughter.

I know a woman who found out she had breast cancer, she told her 2 sisters. One of them had breast cancer also. The third has multiple myeloma. So all three have cancer. In 2010, I found out I had breast cancer. It was grade 0, so I just had a lumpectomy. When I first found out, I called both my sisters. The younger one had never had a mammogram, it turned out she had stage III. She went through everything and happily, it was her 10 year anniversary today. My other sister was fine. I had to have an open-surgical- biopsy of my opposite breast Dec. 2013. My BRCA. was negative the end of that year, yet the next month, I had a pelvic exam and there was blood. Following a sono for the abdomen and pelvis, I found I had ovarian cancer. So I went through everything, myself. 

I'm going on here, but I just want you to remember to be involved in your care and please don't take responsibility for what happens to other family members. You must first take care of yourself. I hope that helps a little. Write back if you'd like, Nesie

8 Replies

Hi Nesie, I never know how to answer on these sites, but I just wanted to say that you sound an amazing woman. I never asked questions, I just put myself in the hands of the professionals and went with the flow. I was diagnosed with Stage 4 Ovarian cancer in April 2010 and I now wish I had asked questions. I know I am BRAC1 positive. Reading your post it seems you are replying to someone's post and you state you have no wisdom, but I think you are very wise and very articulate.  If you were replying to a previous post then I hope the person it was meant for sees your reply. Take care Ann


Ultra radical surgery, and what does that include?

I was a nurse for 25 years, my advice is to keep records of your tests and blood work.. If nothing else, you'll feel involved in your care. 

Having said that, I must tell you that there was a time I didn't do what I'm suggesting to you. It feels like someone slammed you against the wall and told you to ask for more. 

Goodness, I hope I didn't get people mixed up.,I'm sorry if I did.,did you say you were worried about passing the gene onto your daughter?

If that wasn't you, I guess I will try to find who it was meant for.,

My brain is rattling around in my head right now.,

Too much, or not enough,, in there,

I hope you are doing ok, since,this seems a Few years ago. Best dishes, Denese


Hi denese, I think the reply was for me, it is worrying all of this but I am coping rather well everyone else tells me.  

I am keeping a check on all my results my ct scan looks positive, my tumours have shrunk by 50 % and my ca125 is now 12. Down from 1031. 

All is going in the right direction. 

Regarding my sister she has decided to have her ovaries removed first and then go from there. 

Sorry to hear about your fight with breast cancer and ovarian cancer. 

Hope you are enjoying the sunshine, xx

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Well that is a very good start so your ca 125 is within normal range so the surgery will do the rest for you


I know I can't believe it's back within normal range. If only that was the end of it. I'm hoping for ned after my op and then onwards and upwards. 


People were always telling me I was coping well during surgery and chemo

The truth was I was in kind of an auto pilot daze.  It's  normally 

not in my nature to blindly do what anyone tells me. My mom used to say I was ornery. And I would say I  wonder where I got that.

 fB has blocked me, I forgot passwords I guess. If you want to write a personal email,my address is I may have forgotten to mention, between the two can cancers  I had a stroke. So my short term memory is gone. Take  are, Nesie


You really have been through the wars denese, 

Hope you have enjoyed the sunshine today, xx


Yes Millie-c you are beginning to focus now on the positive and that is a good thing,  your op will go well, you have a lot to worry about at the moment but you must mind yourself too.

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