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32 yr-old with POSSIBLE new diagnosis...getting prepared just-in-case!...questions in general and about saving fertility.

alaskagrl
Posts: 2
Joined: Feb 2004

Hi...and thank you for reading my message! I have not been diagnosed with ovca, but I have a 13x8x7cm complex cyst on my left ovary, segmented, and mostly fluid-filled (some minimal solid areas). My report also states 'free fluid' in my pelvis. (I'm not sure if this is referring to outside the cyst or not.) My CEA125 came back at 47.6. Because of these factors, my doctor here in Alaska is recommending that I have the cyst removed by a gyn/onc in Seattle, just in case. They also moved the surgery date up, which also makes me think they are suspicious of cancer. I guess I am trying to get myself mentally (and otherwise) prepared if it is. There is tons of ca on both sides of my family. One of the things that is occuring to me is to try to contact you SURVIVORS! ... to find out what you did right, and just to talk. My mom died of cervical cancer 8 years ago. Do you all have any suggestions as far as treatment, etc...Also, have any of you had an ovary or ovum cryopreserved in anticipation of future children? I have not had any kids, yet! Thanks for your time, and my prayers are will ALL of you! Congratulations on not only your 'survivorship', but also your courage and sharing! =) Erica

mopar
Posts: 1948
Joined: May 2003

Erica: I'm so sorry to hear of your situation, but welcome to the site - you are at the right place! I cannot give you suggestions regarding future children. I think that will depend on what they find during surgery. But have your options available so that before surgery you can discuss them with the doctor. If they find cancer (hopefully not) they will need to make a decision at that time which will be critical to your future. As far as the CA125, mine was only 48 (0-35 being normal). However, I had a large fibroid (which they knew was not cancerous) that needed to be removed. But my doctor recommended I go to an oncologist because of the 48 level since I had a history of endometriosis. That and other factors can cause the CA125 to elevate. So, it doesn't always mean cancer. However, I will be forever grateful that my doctor handed this over to someone who was more adept in that area. Your family history certainly sends up a red flag, so you are doing the right thing. Once you get results of all of this, please write back when you feel up to it. Then we can talk more about other suggestions that we may have for you. How old are you? Do you have a good support system, husband, family, etc.? This is a great site - I'm glad you found us. Just for background, I had my hysterectomy in March of 2000. It was at that time they discovered the cancer, did a total (including omentum and lymph nodes). It was stage 1C (the tumor had ruptured when they removed it). I went through 6 rounds of chemo, and as of today I am cancer free! So, there are many other stories of hope an encouragement here. Please let us know how you are doing. My prayers are certainly with you and your family. Will be waiting to hear! Monika

pshnyc's picture
pshnyc
Posts: 45
Joined: Feb 2003

Erica,
Monica has given you great advice. I would definitely go see a specialist in Seattle to have the cyst removed...you should see a gynecological oncologist. If there is cancer, he/she will be the expert and this surgery can make a big difference in your recovery. You should also discuss with him/her your options. I was dx with Stage 1C ovarian cancer three years ago. I was scheduled to get married two months afterward and the cancer that was found was a big surprise. If your cancer is early stage and you see a good surgeon, there is a chance your unaffected ovary can be left in. This is what was done in my case, but ultimately a year later, I elected to have a complete hysterectomy without having children. I just didn't want to risk any recurrence so I opted for the most aggressive course. I am glad I did this. This is a scary time for you and you are doing the right thing by researching options & help. I would only urge you to see a surgeon ASAP -- if caught early, cancer can be cured!! Good luck and stop back into the site and let us know how you are doing.

groundeffect
Posts: 651
Joined: Mar 2003

Hi, The surgery may have been moved up because if the ovary has cancer, and ruptures, it could move from stage 1a or 1b to 1c. Be sure you know all of your options - I don't know if one ovary could be left (and maybe you could have chemo and still have kids). If the ovary is removed intact, without bursting, you just may have that option.

It's good that you came here with your questions. Your CA125 level is not really that high, compared to some I've seen on this site, and I know it can be affected by liver problems and other things, so it's not reliable as an OVCA indicator.

I wish you the best outcome, and will send a prayer out for you. Please let us know your outcome. Good luck!

groundeffect
Posts: 651
Joined: Mar 2003

One more thing-I heartily recommend reading "Gilda's Disease" by M. Steven Piver (with comments by Gene Wilder) before you have anything done, so you'll have a better understanding of what is being recommended, and why. I'm sure it will make you feel much better informed. I originally took it out of the library, but since have obtained two copies, one for myself and one to lend.

BonnieR's picture
BonnieR
Posts: 1549
Joined: Jan 2004

Hi Erica, I was in a study group with a gal from alaska. She came all the way to Minnesota as she was stage 3c and not given any hope. You on the other hand have the upper advantage (if they find it is cancer) of being found really early. My cancer was so far spread I didn't have the early detection but from the other emails you've received very good advice or suggestions. I would think a trip to Seattle would be beneficial. I have seen the movie on Gilda's story but never read the book but hear it is worth the read and one day I am going to buy it. This got longer than I meant it to be, what I really wanted you to know is I've added you to my prayer list and personally know the power in prayer. So send an update and God Bless you and all your family. Bonnie

Watercolor's picture
Watercolor
Posts: 46
Joined: Feb 2004

Hi Erica, I don't have any experience with gyn cancers, but know of a web site that I think you would find very beneficial. www.hystersisters.com It's primarily a group of active message boards visited by many women -- all related to hysterectomy. One of them is Cancer Concerns. I would highly recommend you take a look around the boards. You'll get a lot of support and information. Mary D.

diana0903
Posts: 4
Joined: Mar 2004

Hi Erica... Reading your post is instant replay for me. I was diagnosed with Ovarian Cancer IC in Sept 2003 at the age of 40. Pre-surgery my CA125 was 44, high but not through the roof. My wonderful GYN surgeon sought the additional resource of an GYN/ONC for my surgery, for which I am forever greatful. You are doing all the right things... I wish I had accessed this sight before surgery, it would have calmed my fears. I just finished my last chemo treatment in January and my hair is beginning to grow back (at the G.I. Jane stage now). My advise to you is to have faith, and stay strong...you will be stronger than you think you can, find laughter, accept help, be as informed as possible and most of all keep the hope. Best of luck to you... Diana

kathydean
Posts: 6
Joined: Mar 2004

please feel free to email me at kathythedean @aol.com, take it day by day. I am survivor of 3months.

kathydean
Posts: 6
Joined: Mar 2004

I am 3b but have a 50/50 of recurrecurence, i feel blessed, but with your young age and wish for children seek several opinions. I did, its my understanding that M D Anderson in Texas has the latest and greatest Email them and perhaps they will give you alternatives. Get several opinions!!!!And go with your gut, they have caughtit early...Key Early. God Bless and start relaxing, the answers will come easier.

MONTE
Posts: 6
Joined: Mar 2004

Erica
There is no right or wrong in cancer. Go to the best OBGYN Oncologist you can find, and trust in him/her. Pray alot. This is a sneaky type of cancer, and there are no conclusive tests for ovarian cancer right now. Do it quickly, early detection will save your life. My thoughts and prayers will be with you. Keep us posted.
Paula from NYC

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