FOR THOSE WITH BORDERLINE TUMORS

I just want to direct those in the diagnostic stages with borderline cancers, to the Ovarian Answers forum with Dr. Goodman, she is kind and brilliant, and has answered several of my pesky questions about borderline tumors. My gyn/onc is pretty insistent that these are benign and should be thought of that way, but Dr. Goodman is more along the lines that the potential to metasticize makes this a subset of cancer. I don't want to put words in to her mouth, so I just want to direct you to read her several answers on borderline tumors. It does help. I can tell you that I will be more adamant in finding out answers from my gyn/onc during follow up next month, but I also have to accept that there is not alot known about my tumor, and frankly that sucks, but I have to accept it.
Live life one day at a time.
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OK, so you may see I accidentally posted this on that answers forum!  I'm a friggin' idiot!
In any event, I just think Dr. Goodman gives the best and most detailed information on borderline tumors, and I am seeing what she means, that this is a subset of cancer, and not so blatantly benign as my doc has said.  So I need to find out more information and not be so comfortable that this means "benign".  I direct you to that forum to read her words!

[scoutshadow]

Hi Grateful
Well you may or may not know that I too have had a borderline tumour removed 16 years ago.  My current doctor's surgery treated this as benign. I recently presented with what the CT scan showed was a complex ovarian cyst. The excuse for this one was that it was behaving differently.  Yes it was as this time I had no excess in oestrogen. And the reply to that was that it may make it more malignant.  Now I have done some research that shows that oestrogen producing tumours have a tendency to spread, but what do I know.  Well I knew something was up with my scar from previous surgeries, and I knew that something was wrong with my bladder.  As it turned out the tumour was coming from the scar and was stuck to the bladder.

This is my point on borderline tumours.  You may be told to get rid of your reproductive organs but the tumour may spread to other parts of the body.  No-one has any way of knowing.  But most agree on lifelong follow up.

I have a leaflet on ovarian canncer from the same surgery that goes all over the North West of England.  

'FACT Ovarian cancer is the fourth most common cancer in women in the UK.  It affects approximately 7,000 women per year.

Do you suffer from abdominal swelling, persistant abdominal pain? [I did but they took no notice until I started getting heavy]

You are at higher risk if you
Have a family history of ovarian cancer
Have a family history of breast cancer
Have never had children'

It ends by stating  'Ovarian cancer can be more easily treated if found early'.

My own conclusions are:
1. Borderline tumours are almost always found early and are cured by surgery - but lifelong follow-up is needed and recurring symptoms need to be taken seriously.

2. Unless abdominal pain/swelling is taken seriously in a woman, then if the cancer is agressive, the tumour will not be found at an early stage.

Dr Goodman is right, Borderline tumours can kill as they can do much damage to vital internal organs.

Thanks for bringing this up and apologies for wittering on.

[scoutshadow]

Just read your post to me further down. Apologies for restating what I had done.

I am glad my reproductive organs are still intact (for now!).  I certainly hope to keep them to see me through the menopause.  After that things can start to get tricky so I will reevaluate the situation then - if all goes well.

[seraphinite]

thanks to grateful and scoutshadow for posting about this annoyingly controversial and confusing area of ovarian cancer.  i feel a little less like an anomaly now.  less alone.  it's hard to answer friends and family who ask, "so, do you have cancer or not?"  I DON'T KNOW!  i have my appointment with my new gyn/onc surgeon on wednesday 7/26.  looking forward to hearing her take on the situation.  i will post again to continue the discussion.  thanks again.

[Grateful06]

Please, let us continue this discussion, I'll post what I find out.  I have a lot of questions, specifically, what organs can the tumors reoccur in?  I was thinking they wouldn't go to anything but soft tissue, no liver involvement, but maybe so?  Do they leave the abdomen, like could they reoccur in the brain? How exactly have people died from borderline tumors, what was the cause, was it inoperable?  Did it turn cancerous?
I can say the Johns Hopkins pathologist says there are NO cases of muconous cystadenomas that are beyond stage 1.  Is he right?
Will we ever know?
Scout, you did a great job deciphering this.  Let us keep doing it.  How do we share email addresses off this site?
I also really trust the Oregon health care system, very cutting edge so you should have a lot to report after your appointment.

[scoutshadow]

Sorry I should explain that I did not have a borderline tumour (a tumour arising from the epithelial lining of the ovary) but a granulosa cell tumour which arises from within the ovary (sex-cord).

BUT - it is treated the same way as a borderline or tumours with low malignant potential.  Surgery is usually the cure and close follow-ups needed.

Needed to get that point straight.  And yes it is frustrating because you never know when it will strike again or where.

Be forever vigilant!