Borderline Cancer

[Jo33]

I have just had a large ovarian cyst (30 x 25cm) removed along with my left ovary and fallopian tube. My consultant said that he didn't think it looked cancerous . They sent it away and my ovary for tests. I went to see him for the results and was told that it was borderline and they couln't tell me if it was more benign or mallignant. It has had to be sent to somewhere else for further investigation.
Has anyone else been told of borderline cancer? I don't know what to make of it.
My consultant has told me I will have to have a hysterectomy but when depends on what they find and I may need chemo.
I am going back next week for the results but I am really worried, I don't understand why the tests don't show what it is.

Jo33

[Cyndi1952]

My 18cm ovarian tumor was also called Borderline after surgery (don't know if LMP or MPSC or ?), yet I was also told "it IS cancer" and it was staged as Stage IV Ovarian Cancer, with infiltrates found in the lungs via a bronchoscopy and lavage -- some abnormal cells were found in the lung washings, but I was told they couldn't definitely be diagnosed as ovarian cancer cells; it is just presumed that they are.  This is all very confusing!  My surgeon is a gynecologic oncologist at Johns Hopkins, so I feel like she and the pathologists are probably on top of their game.  The surgery was a full hysterectomy/oophorectomy and debulking of the tumor, and the surgeon also removed the omentum and the appendix.

What does MPSC stand for, and where can I find out more about that kind of Borderline tumor?  Also, what does TAH/BSO/LND mean?  I can figure out that BSO is "bilateral salpingo-oophorectomy" but what's the rest of it?  I'm not up on all these acronyms!

A pulmonologist I saw last week said that having abnormal cells in the lungs means the cancer is in the lymph system, since that's how the cells got to the lungs, but no one has said anything about testing lymph nodes.  Should I be asking someone about that?  The gyn-onc?  I'll see her for a check-up in about 3 weeks.

Thanks for all the info you've shared!  This forum is a great resource!

[gls2824]

My doctor told me that he also has not seen a recurrence in his 30 years of practice.  He said he believes that women who have recurrences in the first couple of years after surgery, or whose cancer turns invasive, were not diagnosed correctly.  That's why he did a full staging during my surgery.  He took samples of everything (stomach, colon, pancreas, lumph nodes, etc., etc.) and sent the samples out for a second opinion.  Borderline malignancies and other malignancies can exist together.

Sometimes I wonder if recurrence happens more often in women who didn't have a hysterectomy/BSO.  

[BarbT61]

I don't understand how we have two different posts stating different recurrance rates in borderline. From 3-4% in 20 years to 20% and "often present as full malignant".  This is why this tumor is so confusing. Even the professionals cannot agree. I think we all have to do our own due diligence and not take for granted that our physcians know all the facts. My surgeon also said low recurrance rate and he has never seen one recur in his practice. However, on this and other listerves, I see recurrences all the time. Are these recurrances women who were not diagnosed correctly in the first place?
These are just questions that keep going trhough my mind.

[gls2824]

Thanks for your best wishes.  The doctor who did my surgery is a gynecological oncologist, one of the best in the field.  Since my tumor was Stage 1 (which, according to my doctor and everything I've read, act like benign tumors), no further treatment was necessary.  And because I had a complete hysterectomy including removal of both ovaries, fallopian tubes, omentum and lymph nodes, he said 6 month follow-ups are fine.

[ruthie525]

I wish you the best in your future treatments.  Just always remember to have your family doctor recommend a gyncological oncologist to deal with these issues, They are the experts in the field.  Research has proven that women are more likely to recover successfully when a gyno oncologist is at task, rather than an oncologist.  do you get Ca125 tests and ultrasound done every 3 months?  eventually CT scan, too?

[twizzian]

Hi to both of you and thankyou for your reply and support.
Unfortunatly my wife has bcome extremly unwell, after around 7 weeks of waiting we now have the results of her condition.
She has a later stage of cancer and has since had blood clot to both lungs where i almost lost her, her age of 39 may have help her to survive this. but before her condition got worse we were in and out of our local Hospital in Huntingdon England which had made a catologue of errors and in the en were reluctant to take her back for another asites drain. Since this she is now in the hands of Addenbrookes in Cambridge and I feel they are now picking up the pieces from Huntingdon.
Addenbrookes are leaders and experts in cancer cases and I now have every confidence in them to make her well again.
She has now started Chemo instead of the pre planned hysterectomy to suppress the cancer so that she can become strong enough for surgery at a later date.

This is all because she was left suffering for too long from the imcompetence of our local hospital and should have refered her to Addenbrookes sooner, as they admiited to me they could not do anything for her but just sent her home with nutri drinks and a bag full of pills and in an agonising condition.

The cancer has been there for months but much of the terrible pain could have been avoided had she been able to have the surgery first and sooner.