Mixed Review on Ashley's Scan

[bmcd]

An update on Ashley's Scan

[survivornj17]

Bob, My daughter was diagnosed with a germ cell ovarian cancer when she was 19 years old.  That was five years ago this June '07.  

She also had the same treatment as your daughter Ashely, very aggressive, she was down to 100 pounds she was so sick from the chemotherapy.

She still goes to her oncologist every 3 months for examination and blood work.  She has had one pelvic/ ovarian ultrasound done in this five year period, she only has her left ovary also and at one point she felt sharp pains.  This turned out to be nothing.

I am writing to give you hope and inspiration, keep the faith, ask God for guidance, I did.  My daughter is graduating college next month and when I think back to five years ago, its one big blurr.

God bless you and I will keep Ashely in my prayers.

Vin

[stephers]

I am wondering if your hospital would offer you a PET scan. They work on radioactive sugar uptake, tumors usually glow very bright where as inflammed tissue will just have a dull glow - in my experience anyhow. I am 27 years old, and I can kind of relate to what you are experiencing. I just had a scan which showed 2 enlarged lymph nodes and several other supscious masses that are not large. However I too just had surgery back in Dec so i did not get too excited as I have had CT scan that showed 3 large tumors when I had second look surgery two of them turned out to be fibrous tissue. Anyways my point is CA125 does not work for my mine is like 7, CT scan are questionable at best. I'll pray for your daughter.

[Tybear]

Oh Bob...I'm so sorry to hear of this. Even though nothing has been ruled out as of yet, it's still enough to get the mind rolling. The CA125 is not a good marker for me either...never went above 18 when I had my recurrence, so they don't even use it anymore. I too, have to rely on CT scans, which don't always show everything until they are bigger. I know after my surgery, I had some masses show up on a CT scan and it caused major panic...I hadn't even started chemo yet! They turned out to be soft tissue masses...kind of like swollen tissue, and they eventually went away on their own. I also posted a question to Dr.Goodman a long while ago, when they found these two new tumors and she suggested they could also be cystic masses, especially because they were right where I had some surgical clips. I was reading your post and I think you summed it up perfectly how it feels to be going through this. I am a realistic person by nature and I get angry when my family suggests I'm being negative or pessimistic. Truth be told, I have a child to look out for, and I need to be prepared for the fact that I might not be here to do it. I don't think that's being negative, I think that's being responsible. Of course I will always hold out hope that I'll be here for the long run, but my reality is always in the back of my mind.
Anyway, try not to let your mind get ahead of you...or as others would say, don't waste good panic. Easier said than done, I know.
Take care and please keep us updated,
Becky

[Best59]

Bob, what about MRI? Can the MRI give you better pictures? Sorry, if I'm asking s. questions.. How is Ashley feels? She feels OK? Getting stronger?
I have an only son, and I know, how you feel. Sue

[nyc lady]

Bob, wow, I can't imagine how you are all feeling....but, there are cysts that can form from surgery and hopefully by the CT Scan they will be gone.  The waiting game truly sucks.  I hate it, I cannot imagine how hard it will be for Ashley.  

My thoughts are with you all!!!!!

[bmcd]

Ashley feels pretty good.  She is active, goes to school, running in track (coach won't let her compete yet) and seems ok. That being said, here lies some of the problem. Before Ashley was first diagnosed, she felt fine.  No symptoms, no real discomfort. In July, she had some cramping during menstration, easily explainable and not severe enough to raise an issue.  In October she had a slight backache, but had slept on a hardwood floor the night before, so easily explainable and not severe enough to raise an issue.  Nov. 29, she said she had some swelling, it was at her diaphram, very slight, barely noticable.  No pain with it, no discomfort.  When I asked her does it hurt, she said only when I do a back bend in cheerleading. Well...if I did a back bend, call the ambulance...lol. Nov. 30, more swelling and now noticable. Dec. 1, rushed to Womens and Childrens hospital looking 8 months pregnant and shortly thereafter removal of a watermelon sized tumor and dx with ovca. So feeling good is great but experience would suggest not the best indicator. When I asked about MRI, the doctor said that MRI is good for muscle and bone scans but not for soft tissue or organ scans.  He said CT scan is the scan to use. So we wait...
Take care and God Bless to All,
Bob

[bmcd]

Hi all,
As the post indicates, there were mixed reviews on Ashley's scan.  Her scan showed two cystic masses were they removed the tumor.  The doctor "thinks" it may be related to the surgery, but Ashley's cancer is such that he cannot rule out cancer at this point.  Also found out that her tumor markers are irrelevant, due to the fact that her tumor markers have been normal, negative throughout this even when she had the tumor prior to surgery.  That is unfortunate.  Strange that those who have tumor markers that work as indicators I feel are lucky. Like a diabetic that can check sugar levels, tumor markers are a quick and easy way to give indication for a certain level of comfort or a reaction point.  Ashley now has a "ghost in the closet", where only scans can be used.  Cancer is such a fickle disease in that there is such a fine line between hope and reality.  If one leans a little on the reality side, there is an angry mob waiting...calling you a doomsdayer, a naysayer, condeming you as a negative person...some people are truely angry. If one leans a little on the hope side...cancer seems to "smack you down at every corner" and you are set up for continued disappointment.  For all of you that thought you would never walk a tight rope...well you can cross that off your "things I must do one day" list and I will do the same.  Anyhow like many others experiencing the battle with ovca, we are in the "BIG WAIT" mode. How unfair...waiting allows time to think, which leads to pondering, which leads to fabrication of a million different senerios, which leads to panic, terror, and anxiety. The big question mark. So Ashley waits 3 months and goes for another scan.  If these cystic masses have grown or change appearance in any way, she will need a second look surgery, removal of the masses and biopsies done.  If they have not changed or grown, we will talk about it then.  So the port says in, the braces stay off, and we wait and wonder.  Not horendous news in that the doctor did not coming running in proclaiming an immediate danger but not the all clear news I was hoping for.  I will be happy to keep all of you updated as news becomes available...God Bless
Bob

[gma718]

Hi Bob - Boy...sometimes it feels like it will never end!! I wish Ashley the best and I know that everything is going to be okay. She is a strong girl look at what she has accomplished so far..the stregnth she has shown. It is good that she keeps up with her "normal" routine and remains active and busy. You need to put this in the back of your mind until the time comes to face it otherwise you will be going crazy for the next few months. I will keep praying for her and know that she will be well! Take Care :)

[LILYBUG]

I am new here (not dx but strong symptoms and an elevated CA125 for 18 months that just quadrupled). I have been dx with another form of cancer though. It's been a year and a half since dx. I just wanted to tell you I'll pray for your daughter. Since I am not a regular and don't know her story, I assume she is in high school since you mentioned her sports. Although I'm not as young as your daughter (I'm 36), I can't imagine what you go through as a parent. I worry about my parents as well. I have had many things show up on scans that so far have turned out to be nothing. I have met many people with my type of cancer that have suspcious things on scans that turn out ok. It is possible so keep the faith. I can totally relate to you about the negative remarks you can often get when you're just trying to be real. Keep us posted and I'll keep your daughter in my prayers.

[GlendaS]

So sorry to hear about the mixed reviews on Ashley's scan. I, too, didn't have many symptoms to begin with. The type of cancer that Ashley and I had must grow pretty fast. I had just had a postpartum exam 2 1/2 months before my tumor was discovered. Plus, I was still losing weight in the belly area from pregnancy. I felt a spasm about two weeks before the tumor was discovered, but since I had never felt anything I could compare to that other than fetal movement and it would have been physically impossible for me to be pregnant, I chalked it up to not getting enough sleep and thought I just imagined it. I had no significant pain until a few days before the tumor was discovered, but I was on my period so I thought it was related to that. I was in shock when they told me that I had a tumor. After my first surgery, I was scared to death the next time I had lower back pain and went to the dr. for a pelvic exam. That is when they discovered cysts on my ovary and I have consistently dealt with cysts since then. I am sorry to hear that they can't use tumor markers for Ashley, but my doctors told me that they are not always reliable anyway, even for people that they were elevated in. The gyn/onc that just did my last surgery was even hesitant to use them for me because of there being so many other things besides cancer that could cause them to fluctuate. The usual tumor markers for Immature Teratoma are HcG and AFP and neither of those were elevated for me, either, but they did happen to test my CA-125 and CA 19.9 and both were extremely elevated prior to my first surgery. Especially in women under 40, CA-125 can go up for many reasons other than ovca. Plus, they also told me that if my tumor markers were elevated, it may not be a good sign, but I could still have a recurrance and my tumor markers read normal. I can empathize with you a little bit. I remember thinking when I was first dx that I would just have surgery and then possibly chemo and that would be the end of it. What I didn't realize was that it doesn't end there. After having a cancer dx, you deal with it the rest of your life.Whether it's worrying about every little pain in your abdomen or about every scan or about medical bills and health insurance. Every time you think you're ready to move on with your life, something else pops up. It really stinks. I don't know why God allowed this to happen to me or to Ashley or to anyone, but I do know that He wouldn't allow us to go through more than we can bear. He must think that all of us on this site are pretty tough! Maybe God will bring us through this and we'll have a great testimony to share with others.In the meantime, all we can do is wait and try to live our lives without worrying too much. Easier said than done (especially for me because I HATE the waiting game), but being anxious won't make us any better or change a thing in our bodies or make the next scan come sooner. I don't think that there was a thing that I or anyone else could have done differently that would have prevented me from getting cancer or have allowed me to be dx sooner the first time and surely there isn't anything else that I can do now to prevent a recurrance. Keeping that mindset gives me some peace. I hope that you can find peace in all of this.
I am still praying for Ashley and your whole family and hoping to hear good reports! :)

Glenda

[SimplyStar]

One of the first tests Mayo did on my daughter was a PET scan to locate her recurrance. The 3 small lesions showed up clearly, they glowed.  It also showed her that the rest of her body was free from head to toe.  Yes Bob,  I do know how you feel in this, a parent  feels helpless in dealing with a life threstning illness like cancer.  We all would sacrifice our own  lives to save one of our children.  The best thing we can do for them is to think positive and follow closely the course of the disease. Always search for answers to our questions, compare treatments from throughout the world, don't be intimidated by those doing the treatments,  if you see something has been successful, suggest it to the doctor.  There is such a growth now in research, try to stay proactive.  I can tell you are well informed about your daughters type of cancer, that is good, but there is always room to learn more.  A good plan for improvement should always include checking for new ways to fight it.  I wish Ashley the very best, and that includes you also.

[Helmar]

Hi Bob... On reading your comments re Ashley.. just wondering if she could have a PET/Ct scan as we do here. You get the both together, so that pretty much shows everything that the Oncol. could be looking for.
Just want to say too... I know it's hard, but try not to ponder on it, as that won't change the course of what's happening in anyway, but will only make you feel terrible. I'm glad that Ashley seems to be enjoying each day, and living it as normally as she can under her lousy circumstances.
I do hope she gets good news soon. Best wishes and hugs  Helmar...

[nyc lady]

Bob - what does this mean?  There is no info here.....I will continue to watch the board for more info....my thoughts are with you and your family.

Pam