Incurable borderline

[sandiestar]

I spoke to the Dr today re his referral to the Fertility Dr... I am trying to make the best decision for my health and my opportunity to have children. My oncologist has expressed concern re the aggressive rate of growth for my borderline cancer ... it is growing in my uterus... I have had two surgeries so far to remove tumors and nodules, they have told me they cannot get all the nodules due to the size and the fact they cannot see them all until they are large enough to be seen, so I will have then continuely growing on the uterus.there is also the risk of them becoming full carcinoma due to the fast growth rate.

I asked him today if I should consider having a hysterectomy and look at surrogacy to have a child therefore removing the diseased uterus. He told me even if he removed my last bit of ovary, tube and uterus it is very possible the nodules will reoccur somewhere else so I may as well try to have children and we can see how we can. He tells me we can only treat what develops when it develops... I feel like he has told me I have an incurable disease that will at somestage make me ill and there is nothing we can do about tha but wait until it happens and then try to make me better. We did discuss chemo but borderline is not proven to be effected by this so it is not something we will be doing... he did tell me from time to time I will most likely require surgery to scale back the growth and burn off the nodules.

He is a good Dr and I trust him... I just feel a little lost... at least I am still borderline so for that I am thankful... just alittle perplexed about it all...

any thoughts??

thanks

[Tybear]

I'm sorry that you are dealing with this at your young age...I know how hard it is to feel confused by all this stuff.
Have you ever read your pathology report yourself? Because your tumors are growing back so quickly, I wonder if they are a true borderline or something else that may resemble a borderline - there are many low grade carcinoma's that, at a glance, behave like borderline tumors.
Unfortunatley, recurrence is the nature of this disease and because you've recurred more than once, it is likely that this is what will happen in the future. I agree with your doctor in that they do have to wait to actually see something before they treat it, which doesn't seem very pro-active but when your dealing with borderline/low grade cancers, you don't have the benefit of chemo because, as you said, they don't respond well to it.
I wonder if you have also had your tumors tested for estrogen...this is another way of being able to treat this disease. I have estrogen receptive low grade cancer and my doctors will be putting me on Tamoxifin (tamoxifen) after my surgery to see if this will help control a recurrence.
I would suggest you ask your doctor about the estrogen and get a hold of your pathology report to confirm that your tumors are a borderline and not a low grade cancer...
Good luck with things...
Becky

[sandiestar]

thanks for your concern... I have my pathology report and they say non invasive implants of papillary carcinoma... so as they are non invasive I am told this is borderline.
I asked about the estrogen testing but my Dr told me this is not worth doing at this stage as it will not help with anything... tricky!

he has booked me in to see him in 4 months time whilst I recover  from the last surgery and we will go from there... in the mean time I will see the fertility dr.

thanks again
s

[Tybear]

Hmmmm...I`m sorry, I have to respectfully disagree with your doctor on this one. My own oncologist wouldn't test my tumors for estrogen - he laughed at me and told me I had myself confused with breast cancer! I sent them away to Johns Hopkins and got myself a new oncologist!)  low and behold, they were diffusley positive for estrogen receptors. Too bad I spent nearly 9 months taking one of the highest doses of estrogen replacement on the market...
In my opinion, it can't hurt, can it?
I guess it's always something to think about for the future...
Good luck with the fertility doctor :)
Becky

[Ramsay14]

I agree with Becky 100%.  Hormonal therapy is one of the most promising therapies that woman with low-grade cancers have.  At the minimum I think you should have your tumor tested for hormone receptors just so you can have that information for the future should you ever need it.  It can take some time to do, so I wouldn't suggest waiting for a crisis to begin the process of getting it done.  It is information that every woman with low-grade cancer should have.  I hate to be cliche, but information is power.  

[Ramsay14]

I am such a space cadet...I meant "Knowledge is Power."