My daughter has ovarian cysts

Options
Beatrix
Beatrix Member Posts: 7
edited January 2017 in Genetic Testing
Hello, I joined this group in the hope that someone is up and reading this and can offer some advice - my 18 year old daughter was diagnosed 3 weeks ago with a 7 cm ovarian cyst on one ovary and a 3 cm cyst on the other one. Her general dr discovered this as we were doing ultrasounds to find out why she was feeling nauseous.  He referred her to a surgeon who us to wait 3 weeks, do an ultrasound and see if the cysts  have gotten smaller/larger and then decide what to do as usually cysts disappear on their own.  She is positive they are just cysts because she said an ultrasound would show if it's a tumor.  I told her there is a strong incidence of ovarian and breast cancer on my husbands side of the family (his sister had breast cancer at age 30 and has the BRCA 1 gene mutation; his mother died of ovarian cancer in her 40's; his aunt (the sister of his mother) died in her 40's from breast cancer; his maternal grandmother died of stomach cancer.  On my mother's side her cousin died of ovarian cancer (older in age). The surgeon said the father's history is irrevelevant when it comes to ovarian/breast cancer. But everything I am reading says that if he carries the mutated BRCA 1 gene he has a 50% chance of passing it to his children. He has not been tested yet but we are going to do that.  The appointment with my daughter's doctor is tomorrow morning and I hope you read this before I go - if the cysts are still there would it be appropriate/reasonable to ask to do a biopsy of the cyst because of the history? or am I being crazy?  Can you biopsy a cyst? Has anyone been in this situation? Thank you.
Beatrix
· Share on FacebookShare on Twitter

Comments

  • Leah_S
    Leah_S Member Posts: 8,458
    edited January 2011

    Beatrix, I'm so sorry you and your daughter are going through this. It's so hard to see our kids going through this.

    I have to be honest, if I were you I'd find another surgeon. What you were told about the father's side being irrelevant is simply not the case. My family history is from my father's side and is considered relevant - it definitely affects treatment decisions and the recommendations that my onc makes. Your surgeon's recommendation to wait and do another ultrasound in 3 weeks is a good one, but if it were my daughter I'd still go elsewhere. 

    Best of luck.

    Leah

    · Share on FacebookShare on Twitter
  • Beatrix
    Beatrix Member Posts: 7
    edited January 2011

    Thank you Leah, we are going to go tomorrow and do the follow-up scan and I do think we'll do as you said and have another doctor monitor her. I guess a gynocologist. Best of luck in your recovery. Thanks again. Beatrix

    · Share on FacebookShare on Twitter
  • KinAZ
    KinAZ Member Posts: 180
    edited January 2011

    Beatrix,  i would get another opinion... i had emergency surgery to remove a 28cm ovarian cyst...the gyn who did the surgery told me that it was not cancerous....he could tell by looking at it, especially since it was fluid filled, and not a solid mass... 3 days later his office called me to tell me i needed to come in for the pathology report...wth....they would not tell me over the phone that it was indeed a borderline serous tumor....if you google that you will learn these tumors are fluid filled, and are not normal cells,,,they know very little about them, but treatment is the same as a solid cancerous tumor...for me that meant a complete hysterectomy...i do not want to scare you, but i would pursue this aggressively for your daughter.  My 14 yr old niece also had a 5cm cyst, that they did watch, and it went away on its own, however, given the family history she is watched more closely than normal, so yes i think both sides of the family genes are significant. 

    also, i had complained for nearly a year, about pain in my lower back, naseua, and pressure on my bladder, I finally changed doctors, and the new doctor ordered a scan.  this was in dec 2007, in mar 2008 i was dx with breast cancer, today i am doing very well.

     best wishes to you and your daughter

    karen

    · Share on FacebookShare on Twitter
  • kittycat
    kittycat Member Posts: 2,144
    edited January 2011

    I have an ovarian cyst that my obgyn has been watching for over a year.  I was supposed to get it removed and have a complete hysterectomy/oopherectomy in May 2010.  However, I was dx with breast cancer for a 2nd time 2 weeks prior to my surgery.  So, I postponed that surgery to treat the bc with chemo and radiation.  I have the BRCA1 gene mutation, so does my sister.  When I went to see the genetic counselor, she told me I have an equal chance of it coming from either my mom or dad's side.  Since your daughter is so young, I doubt they would recommend a hysterectomy (unless they found something malignant).  They recommended it for me because I'm 41 years old and do not plan to have children.  This is a big decision to make (even at 41).

    · Share on FacebookShare on Twitter
  • Beatrix
    Beatrix Member Posts: 7
    edited January 2011

    Thank you everyone for your advice. I am so glad about the info that was given to me and that we researched. I printed out an article about studies on the BRCA 1 gene mutation and how a father can pass it to his children and I printed out for the doctor and I typed up my husband's family history with ovarian and breast cancer. The doctor was surprised to read the research and I believe she will do things differently in her office as the info sheet we filled out when we first went there only asked for my history.  Anyway, the scan showed the 7.2 cm cyst was slightly larger and the smaller one was the same.  Looking at the family history the doctor decided to remove both cysts and instead of doing it laproscopically she is going to do a bikini line inscision so that should the cysts be cancerous the liquid that that is in the cyst would not spread inside of her as would be the case if it were extracted through her belly button. The dr will take the cysts out of the body attached to the fallopian tubes and remove them outside. I can't tell you how releived I am that we insisted on her addressing the BRCA 1 and the history. It made all the difference in the world and we are optomistic that all will be well.  Thanks again for your advice and I will keep you in our prayers for your recovery.  Best wishes, Beatrix

    · Share on FacebookShare on Twitter
  • LoriL4
    LoriL4 Member Posts: 2
    edited January 2011

    Last month I was diagnosed with breast cancer after my first Mammogram and I had a Lumpectomy on January 7th of this year. A 4.5 cm invasive ductile carcinoma tumor was removed from my breast, unfortunately they did not get it all and I am looking at a mastectomy that cannot be reconstructed for a year because I still have to have radiation and chemo so the reconstruction will not be possible for at least 8 months. (I find out for if the mastectomy is necessary sure next week after my MRI). I am in the process of being genetically tested because that will help me determine if I am going to have a double mastectomy along with a hysterectomy. I have been getting ovarian cysts since I was 14 years old and they have always gone away, I am 45 now so that is over 30 years of cysts that have just been cysts. Last year my twin sister had a 20cm 33lb mucenuous tumor attached to her ovary that was determined to be an extra large ovarian cyst that they thought was a cancerous tumor and when they removed it along with her tubes and ovaries they determined it was benign. She spent three months worried sick for nothing. I have three current cysts that will be checked on again next month and I have faith they are nothing. I wouldn't waist energy on worrying until your doctor tells you it is something to worry about. Your daughter is young and hopefully, as with me they will go away on their own. My advice is not to worry, just watch them with regular sonograms and if your doctor tells you it is something to worry about, then I would worry. Until then live life to the fullest; because the now is all we really have, isn't it. I will pray that your daughter does not have ether of the BRCA genes and that it is just a couple of cysts. Having cysts is very normal, let's just hope for your daughter's sake that that is all it is. Take this with a grain of salt; this is coming from someone who has been up all night worrying that she was going to lose her hair. All I can say is be positive and as supportive as you can so that your daughter stays positive. That positivity is the best medicine for everyone, including you.

    · Share on FacebookShare on Twitter
  • Beatrix
    Beatrix Member Posts: 7
    edited January 2011

    Lori, thanks for your words of wisdom and advice. You are absolutely right and we're staying optimistic just precautious and informed.  The dr had watched the cysts and determined it was time to take them out because the cysts did not diminish or disappear on their own and because of the family history. I am very happy with this decision because my daughter has been feeling sick for a long time and I am hoping that this will make a difference in how she feels and at the same time we can make sure they are only cysts.  I am so sorry for what you are going through. I know it is not easy but keep up your beautiful positive attitude. You are right, staying positive makes all the difference in the world.  Stay strong. I will keep you in my prayers too.  Thanks again. Best of luck, Beatrix

    · Share on FacebookShare on Twitter
  • Cydz
    Cydz Member Posts: 157
    edited January 2011

    Yes, I am BRCA 1+. It was absolutely passed down to me through my father's side. A very long history of the BRCA mutation cancers on that side. I am so glad that you brought it to the doctors attention in a meaningful and helpful manner. You probably changed the course of treatment for her future patients. Pat yourself on the back!

    · Share on FacebookShare on Twitter
  • Beatrix
    Beatrix Member Posts: 7
    edited January 2011

    Thanks Cydz, I'll take that pat - I'm so glad the info was able to help others going to the doctor's office.  Thank you for sharing your info with me.  My sister-in-law asked her genetic dr for a genetic dr in our area so my husband can be tested.  Good luck with your recovery!!!

    · Share on FacebookShare on Twitter
  • LoriL4
    LoriL4 Member Posts: 2
    edited January 2011

    Hi Beatrix,

    I am so glad that your daughter is doing better and feeling better. You are absolutely right, staying informed is crucial. Knowledge is power and it is foolish not to embrace that power and act on it.

    In my case, I am hopeful that my cysts have dissolved by my sonogram, the second week in February. I have enough going on to have to think about that too. If not I will take the next step whatever that may be. My breast MRI is Wednesday and that will determine what type of surgery I have next. I am feeling good after my last surgery. I am keeping my fingers crossed that all will be ok since I am not a candidate for the immediate reconstruction; I still have my life and I am grateful.

    Bless you and your entire family, I hope this is it for your daughter and she never has to worry about it ever again.

    Take care,

    Lori

    · Share on FacebookShare on Twitter
  • Beatrix
    Beatrix Member Posts: 7
    edited January 2011

    Lori, you are so kind, all of you are, with everything going on in your life that you take the time to help others you don't even know is so humbling and touching. Please keep me informed about your MRI next week.  My fingers are crossed too! Life is a beautiful gift and I'm sure you'll have lots of it! Lots of love and prayers for you and your family, and thanks again!

    Beatrix

    · Share on FacebookShare on Twitter
  • Beatrix
    Beatrix Member Posts: 7
    edited January 2011

    Lori, how was your MRI?

    · Share on FacebookShare on Twitter
  • sandrabrac2
    sandrabrac2 Member Posts: 1
    edited January 2017

    I know that this post is a few years back, but I was also refused the BRCA test 8years back and I now have a growth on my overy and grade three cancer as well as finally testing positive for BRCA2!!!

    Please push this even now, these people stole my life, pay yourself if you have to for the test, I was only given it when I told them I was going abroad for the test, because I knew I had it. Even then they tried to hold it up by not giving me the test at the clinic( future family member got it at the clinic) and making me find someone to draw the blood, but they did not put my name on the test tube to be sent to the lab. I waited three months for the result. Everyone else I know waited three weeks, not months for. Their results. It's too late for me and they are not taking responsibility for this even thought both the doctor and the hospital sent me to Diagnostics. They took a family history of my mum, but even although I had told them my dads sister had Brest cancer, they took no history from my dad. My dad turned out to be the carrier of BRCA2 gene

    · Share on FacebookShare on Twitter
  • Moderators
    Moderators Member Posts: 25,912
    edited January 2017

    Dear sandrabrac2,

    As you noted this is an older thread so you may not get attention here. We do appreciate your sharing your story and you may wish to start a new thread in the forum. The Mods

    · Share on FacebookShare on Twitter

Categories