Received the call on Friday that we have been dreading.... "something" showed up on Alexa's latest CT scan...
This was an 8 month checkup. The previous scan was in April, and didn't have this spot.
The "spot" is about 2cm and on the right side (the side where the Teratoma was before, and where her ovary was removed). Have had a completely sick feeling in my stomach for 3 days now..
We go back for a High Resolution Ultrasound on Friday. All blood-work was good... praying for "scar tissue", or a plain ole cyst.. (Can that even happen without an ovary there?).
I am so sorry that you are going through all of this. And yes, you can have a cyst without an ovary. There is something called ORS (Ovarian Remnant Syndrome) and if even one ovarian cell is left behind during surgery, a cyst can form. There are also other kinds of cysts that can form that are not ovarian related, but, blood filled which could be a result of the surgery.
My name is Bob and I am the father of my daughter Ashley, who was diagnosed with stage 3 grade 3 immature teratoma Dec. 2006. First, I want to say that I understand completely what you are feeling. Second, every time Ashley was scanned they found something else suspicious. It started with a "cystic mass" that was discovered where they removed her ovary. Turned out to be scar tissue from the surgery. Then a "spot" on her liver about 2cm. Turned out to be nothing. Then "strange masses" in her breasts. Needle biopsy determined it to be cysts. Constantly cysts on her remaining ovary, they believe these to be "normal" cysts. I tell all of this to you to help you understand that when they are constantly looking with powerful equipment, statisitically "something" will show up. Not to say it is not concerning, I know that it is. I hold my breath every scan that Ashley has. It always seems to turn up something and the dread begins only to turn out to be nothing serious. Yet...it would be nice to get an "all clear" every now and then. This is the nature of this evil beast that has invaded our lives. It is okay to worry, I do all the time, but try to keep it in check until the "spot" is confirmed as something to worry about. Easier said than done I know....Incidentally, Ashley is 2 years out from treatment April of this year and is now considered in clinical remission. Still I worry every day and so will you. These are the scars that have been inflicted on those dealing with this monster. I pray that like Ashley the spot turns out to be nothing serious and that her doctors, again like Ashley's, are just being very cautious until the are comfortable with what they keep seeing. Maybe....just maybe....this has brought a little hope and comfort to you. Keep strong and pray for the best. I will be praying for your daughter as well.
I've read about Ashley on this site since Alexa was diagnosed... It really has helped me tremendously, and really is the reason that I went ahead and created the account. I figured that if you could help me without knowing it, I might be of benefit to someone else.
I've also printed out the detailed account that you provided about Ashley's treatment. It helped my wife understand that the Chemo is not just something to do and get it over with... there was a LOT of heartbreaking anxiety that went into our decision.
We have chosen to take a "wait and see" approach because of the grade of the tumor.. I just pray that we made the right decision.
I absolutely believe that our doctors are being "extra cautious"... as even our home Nurse Practioner was reviewing the CAT Scans, and found the same spot on the same day.
Thank you again for letting me know that the odds are that they will probably usually find "something"... but that it's not always bad.
NYC Lady: The obgyn surgeon only removed the ovary, so there very well could have been some part left attached to the fallopian tube I suppose. These comments help calm the nerves a little, but it will still be a very VERY long week... It's crazy that a picture of her can bring a tear to my eye right now.
Oh...I did not know that you decided on a wait and see approach. That is okay and there is a woman on this site that is several years older than our daughters that was diagnosed with immature teratoma that did the same thing and there was no recurrence and she did not have to endure the chemotherapy. I would have done the same thing if Ashley's grade and stage was not 3's. It was strongly suggested that she recieve the chemo and I tell you, it was no walk in the park. I wish I could have spared her the chemo....couldn't though. Okay...I don't think a wait and see approach could be a wrong decision. If recurrence occurs and there is that possibility and the chances are probably higher with those in a wait and see approach than those who had chemo....the only real set back is having to be told it is back. Tough for sure, but it is not like recurrence after first line treatment. There has been no treatment so there has been no treatment failure. It's a gamble in that if recurrence happens, you have to hear that it is back...but that's it. Not a bad gamble considering that if it does not come back, you spare your beautiful daughter the torture of chemo....lossing her hair, etc.....If it does come back, so be it....she will have the darn chemo and it will be just as effective as if she had it at the onset and she will be fine.
I'm always so thankful that we have such sophisicated equipment that can find every last bit of something. That being said, it absolutely drives me insane when I am waiting for test results. Ugh.
I just wanted to reassure you, too, that even if there is chemo in her future, not everyone has a hard time with it. I'm 56,short and overweight. I'm afraid of my shadow. I had a pretty easy time of chemo; I worked full time, continued working out at the gym, etc. It was all over before I knew it! So, everyone responds differently to it. Just know that I'm not at all the jock type, and I pretty much sailed through treatments. No cancer for last 2 1/2 years, either.
We are all hoping the best for your daughter.
As you probably read, that is the chemo Ashley had and is the first line treatment for immature teratoma. Ashley had a total of 4 rounds and it was administered over a 3 day hospital stay followed by roughly two weeks recovery between treatments. It is an aggressive treatment, but is over relatively fast. Ashley started hers in January and done in early March. The hardest thing Ashley endured was the loss of hair which really started coming out durning treatment #2. There is just no saving it, so any way you can prepare your daughter for this will put you and her that much further ahead. Cisplatin is very rough on the kidneys so make sure Alexa drinks alot of fluids prior to chemo as well as during and after chemo to flush it out. I believe the cisplatin was responsible for most of the nausea that Ashley had. It took a little while but by the end of the second treatment they had the combination of anti-nausea meds that helped. There were 4 different meds in combination that finally worked so if what they are giving her isn't working, do not hesitate to ask for something else. As aggressive as this chemo can be, in between treatments Ashley would run on the treadmill, still go to school, socialize with friends, and was even able to take her regents exams while having the treatment so it is doable. If you have any, and I mean any questions about anything related, please do not hesitate to ask. I have already walked this dark path and may be able to provide some insight as to what to be expected or what is to come. I pray that Alexa's treatment is as successful as Ashley's treatment was and that she has a speedy recovery leading to a time where she can put this all behind her and get back to being a normal young woman.
Thank you to everyone for your thoughts and prayers.
On Friday we went to St. Vincents Women's Hospital for the High Definition Ultrasound. The technician couldn't find anything unusual during the examination. She was specifically looking in the area of the spot, and noticed NOTHING unusual.
When this information was relayed back to the oncologlist, they said that the Dr. had thought that the "spot" was nothing (ghosting, shadow, etc..), but just wanted to get it checked out to be sure. (That's the first they told us of that however!). There has now been 2 different oncologists, 1 Ultrasound Doctor, and 1 local doctor all give us the "all clear" for another quarter!
Whew... My daughter has started writing a song about her life... it's titled "RollerCoaster"... seems appropriate.
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