Borderline OC: Fertility, Cryo freeze

So50
So50 Member Posts: 6
edited July 2016 in Ovarian Cancer #1

My story starts out similar to the other Borderline OC survivors whom share their stories here... 

I'm 33. I went in to the GYN in April for pain, hormonal fluctuations and infertility. They found a large cyst 14cm And 4 smaller cysts on one ovary.They told me I had endometriosis.( I was told specifically not to worry because it didn't look like cancer "or anything".)

I woke up froM the laproscopy... After a long confusing lack of information, it was determined that the cysts were borderline cystsodemas and that I had borderline tumors on/in

the ovary surface that had the cysts

the remaining ovary

the bladder

the uterus

the diaphragm

and possibly but not significantly, a small spot on my liver

Before they even said the words "hysterectomy", they ordered a visit to the reproductive endo due to the fact that we found this trying to conceive our first child. The RE said that a live harvest for IVF/surrogacy was not an option due to the tumor. Here is what they offered...

An experimental proceedure... During the hysterectomy, a piece of the remaining ovary that is healthy would be frozen with the hopes that an egg could later be fertilized for surrogacy. The chances? It's a research level shot in the dark kind of Hail Mary. 

So if you're out there and you've taken a chance on cryofreezing ovary tissue, please share your experience. Have you tried using the tissue yet? How much were you able to save? Do you have any odds?

 

 

Comments

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #2
    So50~Glad U wrote here-My suggestion-Always a have 2ND Opinion

    Dear So50 - No answers that I can give, only lots of questions.  First, have you had a SECOND OPINION?  It would seem to me that even if an "egg could be salvaged for possible future fertilization", will they be able to determine that the egg is a "healthy" one?  It would seem that the uterus, fallopian tubes and ovaries will be removed naturally.   I, like you, are very uneasy about all the other places that are questionable for "borderline tumors!"  

    What further treatments have been outlined after the hysterectomy is performed?  Surely, chemotherapy will be a part of the plan?  Would that be "neoadjuvant" or "adjuvant"?  Was radiation mentioned?  I had 3 tumors on the Caudate Lobe of my Liver, but they were not IN the liver.  I had "targeted radiation" for that area and it was totally successfully.  We always hope for the best, but unfortunately cancer comes with "no guarantees."  So I'm sure you will leave no stone unturned to be sure that whatever plan is offered will have been agreed upon by at least two top medical teams.  That's my only advice presently.  

    So basically I just wanted you to know that I'm certain several of us have read your entry.  However, sometimes I see that ladies often do not answer if they can't identify specifically with the problem outlined by the "newbie."  When I first wrote here, I didn't get an answer.  It was a simple question about bowel irregularity after Cytoreductive surgery (CRS).  I was just curious, but now I know the answer.  It is that there will be "irregularity" once bowels have been resectioned.  But I am a person who does a lot of research  for myself, and I'm still happy to be alive.  So far, I am a Stage IV survivor, and so what's a little "diarrhea and constipation"?  It's a small price to pay for "stayin' alive."  And I always think OK I'll take these two pals over "blocked bowels!"  That's the way I look at life.  

    So for the time I can say, I will be praying that God will guide you to find the very best doctors who specialize in the "female anatomy."  You're in a difficult place.  I wish I could offer you a pathway to the best treatment facility.  We are a "sympathetic lot" even though we can't always help.  But if there is anyone here who has a problem similar to yours, I hope they will answer you.

    All the best,

    Loretta

    Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

     

  • So50
    So50 Member Posts: 6
    #3
    Update on cryofreeze

    Hi there. Update on my decision...

    16 days post hysterectomy/mass removal by midline laparotomy (the torso length incision).

    The masses were removed from all over my abdomen, and the lesion on the liver found to be just a benign one.

    We decided to sign on to the research study to cryofreeze the ovarian tissue After we got results that my hormonal blood work looked good. And here's more about the cryopreservation...

    The research assistant explained that they are very close to having the ability to use the tissue to harvest eggs after freezing, but they are not there yet. Could be next year, could be 10. Part of the viable ovarian tissue belongs to my husband and I, frozen in a commercial bank, and the other part donated to the research study, for the purpose of developing the technique to do the harvesting and insemination. We're hanging a low level of hope on it, but we figure if it can ever happen, it needs to start somewhere.  All told, they aren't sure how to tell if the microscopic spread of the borderline tumors has affected the eggs until it's time to try to use them. After the first year of freezing, there's annual storage fees and transferring fees if we want our tissue back for any reason. 

    If you're reading this wondering how to get involved with this or a similar study, ask your reproductive specialist and/or oncologist about the University of Pittsburgh Medical Center study.

     

    S

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    edited September 2016 #4
    So50-U R A part of something bigger than yourself-Kudos!

     Hello “So50”

     Well, it's good to hear from you again.  And really good that the liver lesion was benign.   Did you have your surgery at the University of Pittsburgh Medical Center?  My husband and I could not recommend any one medical facility any more highly than UPMC.  They are on the cutting edge of research, technology and transplants of all descriptions. 

     My husband received his Ivor Lewis Minimally Invasive Esophagectomy there in 2003.  Dr. James D. Luketich pioneered the totally laparoscopic procedure there in the mid-90s.  And my husband is still cancer free and it is now 2016.  We love Dr. Luketich.  And then in 2012, I was diagnosed with Peritoneal Carcinomatosis here and went to UPMC for a SECOND opinion with Dr. David Bartlett.  After neoadjuvant chemotherapy, he performed Cytoreductive Surgery on me in 2013.  I am now 3 years beyond the time I thought I might be here.  So my highest praises to UPMC for all that they do.

     As I expressed in my other letter to you, my only question was how they would be able to determine the viability of the “egg”.  You’ve answered that.  And I say “kudos” to you for being a pioneer in the field of cryotherapy.  You know that EVMS here in Norfolk is the home of the in vitro fertilization process. (IVF) Every year they have a reunion and so many parents and their "IVF" children come together to celebrate the joys of being a "family."  Even if this experiment does not prove to come to fruition in your lifetime, (and who knows that it won't), you’re part of an exclusive “pioneer” group that is willing to donate a part of your body in an effort to help others have their dream of having a child fulfilled.  I’m sorry that your problems surfaced before you were able to have a child.  But if and when this type of technique of harvesting and insemination becomes a reality, you two will know that you played a vital role in making that a reality for oh so many.

     Hope you regain your strength soon.  Thanks for filling us in.  There may be some here who have more to offer.  All I can say is that I’m encouraged that UPMC is endeavoring to make this a reality.  If any medical facility can do it, I’m sure they will.  And once more, thanks for your willingness to “give a part of yourself” to benefit medical research in this field.

     All the best to you,

     Loretta

    _____________________________________________________

     Just a few articles to let others know what UPMC is up to these days!

    1.   http://www.upmc.com/locations/hospitals/magee/services/center-for-fertility-and-reproductive-endocrinology/treatment/Pages/fertility-preservation.aspx

     More about the research that you are now a part of. 

    _____________________________________________

     2.  http://www.upmc.com/media/NewsReleases/2012/Pages/Pitt-Developing-Universal-Flu-Vaccine.aspx

     “PITTSBURGH, July 19, 2012 – A vaccine strategy that protects against all strains of seasonal influenza and avoids the need for annual vaccination is the ultimate goal of a research collaboration between the University of Pittsburgh and vaccine-maker Sanofi Pasteur…”

    ______________________________________________

      3.  http://www.salk.edu/about/history-of-salk/jonas-salk/

     I’m forever grateful to Dr. Jonas Salk who invented a vaccine for polio at UPMC.  My children and I were able to have the first “oral” vaccines back in the 60’s.  So there’s more than one reason I have a special place in my heart for UPMC.  And now I see from the article above that UPMC is working on a vaccine to prevent all strains of influenza.  What a huge discovery that would be.

     “…In 1947, Salk was appointed director of the Virus Research Laboratory at the University of Pittsburgh School of Medicine. With funding from the National Foundation for Infantile Paralysis—now known as the March of Dimes Birth Defects Foundation—he began to develop the techniques that would lead to a vaccine to wipe out the most frightening scourge of the time: paralytic poliomyelitis…”

     4.  http://www.history.com/news/8-things-you-may-not-know-about-jonas-salk-and-the-polio-vaccine

      _________________End______________________

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