Dysgerminoma

[mtatum]

My 23-year-old daughter was diagnosed in October 2005 with dysgerminoma, a germ cell malignant tumor which originated in her left ovary. Upon its removal, along with her left fallopian tube, and following a C-T/PET scan, her disease was detrmined to be Stage IIIC. (A second live tumor was found in a lymph node located near her left kidney on the aorta).

She has just finished her fourth round of BEP chemotherapy and is back in school. We are waiting to go for her post-chemo C-T/PET scan to determine if this first-lline treatment was effective or not.

I am looking for other persons who have had a similar diagnosis. Because dysgerminoma is usually found in younger females, it seems to be considered more of a pediatric disease in all the literature. In addition, many oncologists feel it is analogous to testicular cancer in males.

One of my main concerns at the moment is that our insurance company (Blue Cross Blue Shield of Texas) would not pay for her initial pre-chemo PET scan, which is critical to determine if a tumor is alive or dead. We fear that they will also deny payment for post-chemo PET scans. These are no longer considered "experimental" by the medical oncology community in effectiveness for determining whether a cancer has survived chemotherapy, and during follow-up care whether the cancer has recurred.

Does anyone have any thoughts or experience with this?

[sharon]

I fought for several months with BC & BS back in 2000, but I did get the payment. Call up your representative or the 800 number and ask them what the process is to dispute a non-payment. There is usually a hierarchy of a process - first you do this, then you do that. Follow all the way through. And call up the office of the place that did the PET scan for you. Ask them if they have any supporting research or documentation that shows that PET scan is effective in this case.

I have to tell you honestly, there may be a reason BC & BS is not paying. If an MRI or CT was not done first, or in conjunction, they may have a valid reason for denying payment.

[mtatum]

The PET is used in conjunction with the CT scan to distinguish any remaining live cancer cells from necrotic (killed) tumor debris. BCBS knows this, and my daughter's oncologist has submitted much support, yet they maintain it is not necessary, it is experimental, etc. etc.

I am in constant despair that the insurance industry has this power over us.

Thank you Sharon for your concern and response.

[sharon]

BC&BS of Texas has mutliple health plans. I reviewed some of them and they would have paid for a large portion of the scan. Are you sure that the billing department of the institution who did that scan submitted it correctly. If they did not put the right codes on the submission or did not 'justify' the purpose of the scan, then it would have been rejected by BC&BS. Have you called BC&BS and asked them what happened?

I am in agreement, we are all concerned about health insurance and changes that will be made to medicare and other national health programs.

[ryanandbec]

I also was diagnosed with dysgerminoma when I was 21 yrs. old. I am now 24 and am doing great. I went through 4 rounds of BEP. Please let me know if I can help. I would be more than willing to talk to you.

[krisztyna]

I am 40 years old.I was diagnosed with dysgerminoma.I had an operation in February 2006 because a malignant tumor of a childhead size was found in the left ovary.It was an all-out operation. Luckily I already have a 17 years old sun.There wasn't found any metastasy,the tumor was taken out in one but in the wash-over liquid there was found P3 cells. For that reason my disease was cathegorised as 1C or 2A. After the operation I went through a 4 round BEP/from April to August 2006/. Now I'm OK according to the examinations,my results are good.I have only some minor paints in my right side.Doctors say it is because of the chemotherapy.I'm looking for people with the same illness. And I would be pleased to share experience with anybody in the same situation. I write from Hungary.I wait for your reply.Thank you: Krisztyna

[3conrad]

I am 35 and recently had a dysgerminoma removed the size of a small soccerball, followed by a hysterectomy. I am told it was stage 1c. I had a 3 month waiting period to get into surgery as they had diagnosed me as having a uterine fibroid. I am waiting to have a PET scan to determine if I need to have chemo or not. Very worrying time as well as having to deal with HRT.
Love to hear from other people

[krisztyna]

I am 35 and recently had a dysgerminoma removed the size of a small soccerball, followed by a hysterectomy. I am told it was stage 1c. I had a 3 month waiting period to get into surgery as they had diagnosed me as having a uterine fibroid. I am waiting to have a PET scan to determine if I need to have chemo or not. Very worrying time as well as having to deal with HRT.
Love to hear from other people

Hello,Im Krisztyna!I had ysgerminoma too.How are you now?