Question: I was diagnosed with ovarian cancer IIIc four years ago. At the time of Dx my children exhibited the same symptoms, including pelvic lumps (!) which resolved themselves as their bloating eventually subsided..We also experienced many, many other symptoms such as rashes, XXXXXXX diarrhea, "malnourishment", gray hair (all of us at the same time suddenly had gray hairs!) and petechiae (sp?) just to name a very few. I was diagnosed at the height of the pelvic lumps and told it was cancer. My question is, after all these years, WHAT was wrong with my kids and me and how could it not have shown up at my surgery.

My kids were 12, 10 and 7 at the time. I was 39, no family history of any kind of cancer, and no risk factors. Any ideas on what would cause those symptoms, and NOT be picked up on at my surgery?

The duration of all of these symptoms in all of us was about 18 months (post surgery mostly). I had no indications like most ovarian cancer patients have that anything was wrong until we exhibited these symptoms about 2 months before I was diagnosed.

Thank you for your response. I have been researching via internet for years now and I cannot make heads or tails of it either. I had my son examined at the time he had the lumps, but I was so scared for him I actually told the doctor, please don't touch his stomach, he's been complaining about it. Silly, but I was scared for him! So, unfortunately, no tissue samples or imaging from him, which I regret to this day. When I developed the "lumps" right after he did, I waited to see what would happen for two months...His began to resolve, but I went to the doctor anyway because I was so baffled by it all. That's when I received my diagnosis. (My daughters and I developed all his symptoms following him by three weeks). I do, however, have records for my eldest daughter showing fluid in the cul-de-sac on a sonogram (she wasn't menstruating yet), as well as a diagnosis of constipation from a pediatric GI. My middle daughter did not experience the symptoms as debilitatingly as did my eldest daughter, son and I. As far as environmental factors, we did have minor remodeling done, but the symptoms started prior to that. What did help us all eventually was to take a dose of pinworm medication which I obtained through our pediatrician (which was about 18 plus months from start of symptoms). I was desperate and we had all seen what appeared to be "worms." My son's hives began a couple of months prior to the symptoms and continued throughoutl that time. He never had them prior to that time period or post. Again, there were many other symptoms, too numerous to list here. I actually have a list and there are around 70 of them, no joke. One intriguing thing was a scaly single skin "patch" we each had, which eventually cleared up. The only thing I was ever able to come up with was intestinal parasites as an explanation...do you think it is possible for a parasite to cause so many symptoms over such a long time period? We live on Long Island, not exactly the tropics...but there were complaints from people who were in close contact to us at the time, but they resolved soon after they were away from us...which makes me think we were contagious...it sounds silly even to my own ears, but it is true.

My childrens' bloodwork (all three) from that time period showed consistently low MPV values and consistently high LY levels and medium-high MO levels. The rest were usually normal.

Now we seem to be back to normal (all still have the gray hairs, except for my son now), and my eldest daughter complains that if she eats anything at all before exercising she gets terrible stomach cramps-which didn't happen before all this- but that's all.

My husband and middle child had these symptoms, but experienced them to a lesser degree. I speculated that since I and my other two kids were very active (tennis, soccer and hockey), we felt it much more keenly. I don't know.

I had chemotherapy but no radiation from August 07 through April 08.

I've thought of taking all of this to an infectious disease specialist including my slides from surgery, but I don't even know where to begin explaining all of it..this was really my first shot at it! I really, really want to know what it was because I don't ever want us to ever have to go through that ever again. Thanks again.

Dr. XXXXXXX Thank you so much for your concern and interest. I appreciate it very, very much. Yes, ovarian cancer was a huge challenge, it was made even more challenging because of all the additional symptoms I experienced during that time. Not to mention trying to tend to my ill children.

We did not see a dermatologist during this time...in hindsight that would have been a great move, but we were so wrapped up in my diagnosis that no one was thinking clearly I guess.

I am going to provide several symptoms off of the list I compiled, hopfully it will be helpful...I tried to put a timeline on these symptoms with an "E" for early on, "L" for later in the course and "D" for duration.

1. Strong appetite or weak appetite, it was feast or famine. E
2. Dark urine, excessive thirst. E
3. As the bloating subsided, there appeared first an upside down "V" shape at the top of the abdomen followed by a slow draining downwards, ending in just swelling of pelvic region, which lasted the longest (a couple of weeks). E
4. No. 3 followed by itchiness all over. E
5. Noisy stomach. D
6. Shakiness. E
7. Stabbing/jabbing rectal pains. E
8. Visual disurbances, i.e., darkening of peripheral vision. E
9. Strange food cravings. E
10. Sore tongue, white tongue, taste changes. D
11. Areas of skin with loss of pigmentation (white spots). D (we still have a couple)
12. Horizontal nail ridges on fingernails. (Also, my toes--only me--had what appear to be vertical black stripes which I read could have been a fungus -- I did play a lot of tennis, so it could have been fungus and/or trauma). D
13. Joint cracking (excessive). D
14. Joint pain. D
15. Night sweats (son especially). E
16. Hives on son. D
17. Rashes on all of us, some looked like acne, some were just small flat tender red patches. D
18. Stabbing/jabbing pains all over abdomen. E
19. Navel pain upon touch. E
20. Fatigue. D
21. Scaly "crumbly" patch (single) which I already mentioned. E
22. Excessive cramping and trouble pushing out stools, particularly pronounced in son. Particularly pronounced in the early weeks/months. E/D
23. XXXXXXX diarrhea. D
24. Itchy bump (shortlived) on sole of foot, itchy soles. E
25. When I ran a hand down everyone's abdomen, I hit a "wall" of worts at just about the navel line which extended across the pelvis..my son had palpable lumps, one bigger one on left side, smaller and lower on right. E
26. Pain and pulling/tugging sensation in mid to upper left side of back. E
27. Body odor (armpits--even within minutes of taking a shower). D
28. Mid grade fever very early on.
29. Off and on Low grade fever following that for a couple of months.
30. Urinary urgency (I know, ovca, but we all experienced it.) D
31. Thinness that seemed to start in the face and neck then work its way down the body....very strange, and maybe I just imagined that it worked its way "down." It seemed that way, though, especially in my son and myself. D
32. A burning sensation in rectum. E

There seemed to follow a slow-moving recovery period extending over the many months of this illness, and we experienced all the symptoms marked D during this "recovery" period.

I know this is a lot of disparate information. I very much appreciate your taking the time to speak to colleagues about it, more than I can express, and any information or direction you can provide to me is so much appreciated. Thank you!
XXXXXXX Komarek

Sorry, I wanted to add Petechiae (probably spelling that wrong) to the list even though I mentioned it already...they were tiny little red pinpoints all over our us, particularly on the upper torso and upper extremities.... "L" experienced a little later in the illness. We each have some left, but the majority have faded away. Thanks again!!! XXXXXXX