does my 16yr old daughter have ovarian cancer?

My daughter is 16 and after months of having right side pain,( I took to the doctors many times and to the ER 3 times) she had surgery and a serous borderline tumor was found on her right ovary. There were also a couple implants on her right tube and 2 peritonial implants. All implants were noninvasive and the tumor and implants were removed. There were some cells in the peritonal fluid. Her pediatrician told us that she had ovarian cancer and to be sure and get different opinions on pathology and treatment. We had pathology done twice at 2 different labs and both agreed. We took her to Dornbecher (Portland Oregon) and she asked the Doctor if she had cancer and he said yes. He said that she will most likely need to have her right ovary taken out, and maybe chemo. He also said that he had not treated this before and referred to the Womens Health Center at OHSU. We saw a OBGYN oncology surgern and she said, "no, you do not have cancer". She said that my daughter has stage 2 borderline ovarian tumor w/noninvasive implants and that she does not need to have any other surgery. They will follow her with ultrasounds and ca 125 tests. If it comes back then surgery. She said that if it comes back is comes back as noninvasive again and can be taken care of. She said that my daughter should think of having children early in life and have her ovaries removed at age 35 or so. Should we get another opinion? Thank you


This discussion is related to Borderline Serous Surface Papillary Tumor of the Ovary.

[hopeshell]

Borderline tumors are very confusing!  The problem is that there is a differing opinion on whether or not they are in fact "cancer."  The experts don't all agree.  In the past, these types of tumors were always classified as cancer.  But, in later years, they have learned that most of them behave in a benign fashion.  According to the National Cancer Institute and many other organizations, they are a form of cancer.   Women are often spared fertility, but borderline tumors can and do recur.  It will be very important for your daughter to have very close follow-up indefinitely.  The plan your doctor mentioned of ultrasounds and CA-125s sounds like a good plan.   There are several women on this board who have had their borderline cancers recur and a couple have even had them return as invasive carcinoma.   It will be important for her to report any new symptoms right away.

FYI, here is a link to the National Cancer Institute's recommendations for follow-up for borderline tumors (also called low malignant potential):

http://www.cancer.gov/cancertopics/pdq/treatment/ovarian-low-malignant-potential/Patient/page5


What a terrible thing to face at 16.  But,in general, the prognosis for borderline tumors is very good.  I think you have enough opinions now to feel safe with this treatment plan.  Chemo is not very effective on slower growing tumors (especially borderlines).  So, to treat with chemo may cause more harm than good.    Best wishes for her continued healing and that this will never return!

Shelly

[hopeshell]

To clarify...I think you should go with the 2nd doctor's opinion...no chemo and no more surgery for now...close follow-up.  That is the standard recommendation by gyn/oncs.

[megmom]

Thank you for your insight. You are right this is very confusing. This is also a very diffficult time in our family as my husband, Megan's dad is suffering from stage 4 colon cancer. I just don't want to do the wrong thing in helping my daughter. I have read some of the posts on this site and it sounds like most women have their ovary, (that had the tumor) taken out. Thanks for all of your help.

Megmom

[hopeshell]

Oh, that is terrible!  I am really sorry to hear about your husband's cancer in addition to your daughter.  You really have too much on your plate!  I think you are doing the right thing with your daughter by skipping chemo.  I personally do consider borderline tumors to be cancer, but they are a very slow growing one with a high cure rate.  I can't even imagine the stress you have been going through.  I'll be praying for your family!

Shelly  

[Heffmeister]

I had a borderline mucinous tumor taken out In April. I got a second opinion and everything agrees with the opinion of your second doctor. Chemo is ineffective and these tumors are cured by surgery. I am 32 and did end up taking a total hysterectomy but that was because I already have 2 children and also had re-occuring pre cancerous changes in my cervix. My doctors would of been happy to have montoried me with scans and ca 125 blood tests if I had wanted more children.

You have to weight up the risks of a tumor re-occuring and the risks of going through a surgical menopause at very young age.

Good luck.

[charlie12773]

Hi there Megmon

I am so terribly sorry you and your family are having these terrible health issues , you have all my sympathy.

I had a borderline mucinous tumor taken out in January 2010. Because of fibroids I laso had a hysterectomy as well as a removal of the other ovary then.

My consultant says that because it was not invasive I should consider that I did not have cancer. I know that other doctors may not agree but it's good to be able to  not have to tick the cancer box on questionnaires.

I live in the UK and the advice we are given here is the same as you have got in the States, i.e. get a second opinion , fertility can be preserved in younger patients and chemo is not effective for these tumours. This is such a confusing diagnosis, you have all of the concerns associated with cancer yet are given none of the support you need.

Take care

Charlie

[megmom]

Thanks for all of your kind words. I just want to claifiy, The only surgery that my daughter was the removal of her appendix, the tumor taken off the right ovary and all of the implants removed. They are saying to not take out her ovaries, not even the right one were the tumor was found. This is okay? Just follow up with ca 125 and ultrasounds?
Thanks megmom

[Heffmeister]

I presumed that she had her right ovary removed. I would have throught this would of been the treatment of choice but I'm not a doctor. Often you don't get a choice as with a large tumor the ovary twists and dies anyway- mine was removed with the tumor.

At my second opinion I was told that there is a 10-15% chance of another borderlne tumor growing on either of the other ovaries again but occasionally (don't know stats on this one) they can come back as a frank malignancy. Doctors think that young women who grow these borderline tumors are the ones likey to develop ovarain cancer in later life.

Hth and sorry you have to go through all this x

[megmom]

No, they did not remove her right ovary. They said that this is not cancer, that there were no micro-papillaries. All implants were nonivasive and the cells in the washings will  most likely be reabsorbed by the body. The cells do not have the same capability of reproducing as the cells in the tumor. I asked and grilled the doctor, saying are you sure we should not be taking out the right ovary. She said that my daughter has a 15% chance of recurring and that it usually is another borderline tumor LMP and under a 5% chance of it coming back malignant. If it comes back then take out the ovary. If they take the ovary out now she could still have a recurrance, on the left ovary or uterus, She needs her ovaries for heart, bone and babies someday. Taking out her ovary only drops the chance of malignacy by 2%. We are getting one more opinion it a week or so.
Megmom

[Heffmeister]

That's interesting. If that's right it makes sense not to have the R ovary removed. My tumor was football sized and had ruptured so I am also concerned about a re-occurance. Let us know what is said at the other opinion.