Squamous Cell Carcinoma of Ovary

[motherofthebride46]

In May 2007 my doctor discovered that I have Stage IV squamous cell carcinoma in a mass where my lymph node and ovary fused. I seem to be human guinnea pig since this is so rare and the doctors don't know what to do. I am receiving chemo to "maintain" the size of the tumor since it has not responded to any other chemo after my first... cisplatin (with radiation at the same time). The tumor shrank, and ALMOST became flush with my hip bone so it could be surgially removed, but after an 8 week break from treatment the tumor began to grow. Now, the doctors say, "There is nothing else we can do". Does anyone else have this rare diagosis? How long have you been a survivor? What treatment have you received? What hospital did you choose for care? What treatments have worked in shrinking your tumor? Are there any clinial trials for me to be involved with? My doctors need a course in offering HOPE! Can any survivor of this diagnosis give me hope by sharing their experience? Can a doctor who has treated patients with this diagnosis give me hope and treatment options or clinial trials to pursue?Thank you for your help.

[tommytomlinson]

  My wife 28yrs old' is pregnant with her third child. This will be my first child. at 13 weeks she had emergency sugery to remove left ovary containing durmoid cyst. Four days latter we recieved news that sqamous cell carsinoma was found, not only in the cyst but on the falopian tube. Our doctor feels he removed enough of the falopian tube but is concerned because of the rarity and lack of info in these cases.
  We will be seing specialist this comming week.

  The rsearch I have done popints to women in there fourtys+. How old was yor mother?
   God bless you. I realy need some hope, the more info I have the stronger I can be for my family.

[motherofthebride46]

Thank you for reaching out to me.  I'm sorry about your mom.  I will read your past posts.

[motherofthebride46]

Thank you for being supportive.  Ironically, there is another doctor at Sloan that I would like to switch to, but I was told by staff membrs that Sloane makes switching doctors almost impossible!  

[Searching48507]

My mom was diagnosised Dec 14th with Stage I squamous cell arising from a dermoid cyst.  I agree very rare.  Unfortunately, after her hysterectomy, some of the cells must have broken free into her abdominal fluid as within 8 weeks, she had 5 -7 golf ball sized tumors that had grown throughout her abdominal cavity.  They removed all of those, and 3 weeks to day after that surgery she began chemo of carbo/taxotere.  She did not make it.  She passed about 12 weeks after she began the chemo.  However, Karmanos cancer institute in Detroit has treated this very rare form with success.  They had agreed with my mom's treatment option of the carbo/taxotere.  She was on a small dose as she was weak from 2 surgeries (hysterectomy on Dec 14th and 2nd surgery on Feb 8th).  Since you haven't had the surgery you should be able to tolerate a stronger dose than she did.  

Indicators of her tumor growth from all episodes in December and throughout were a high white blood cell count (even while on chemo which should reduce the count) along with anemia.  I believe that when they gave her the shots to increase her red blood cell growth that the tumor actually was growing faster.  Please feel free to look at my profile and posts as it talks about her specific experiences throughout our journey.

Wishing you the very best and a remission from this beast.

Karen

[nyc lady]

Have you thought of going for a 2nd, 3rd, 4th opinion???  I hate when doctors say this....if you still have the fight in you than they should give you tools to help you fight.  

All I can say is don't give up....see other doctors....you know how you feel and you know how much fight you have left.

All the best,
Pam