what does it mean?

[lyn42]

Recently diagnosed with Mucinous Bordeline tumor ot the ovary with intraepithelial carcinoma, foci of microinvasion and an anaplastic mural nodule of sarcomatous carcinoma (approx. 5 mm).

I had a TAHBO.  I'm 42.  I'm on estrace (2mg) for my night sweats.  

The surgery was on July 14.  I'm still getting that lump in my throat feeling, and I feel full after eating only a little.  The gyn. oncologists told me I had no worries.  It's all taken care of and carry on with life.  He is suggesting a yearly physical exam for follow up.

Your thoughts?  I'm still worried.  I still feel "symptoms".  I don't feel....better.

[gls2824]

I was diagnosed with borderline tumor in January 2009.  Had TAH/BSO.  No picnic.

I was followed up every 3 months for one year and then went every 6 months with a CA-125 test ordered each time.  No PET scan, MRI, etc.

I'm going out on a limb here, but how you are treated does depend on the country you're in and sometimes, in the US, procedures and visits are scheduled, especially when you have good health insurance, because the insurance will cover it, not because it's necessarily needed.

If you feel uncomfortable with what your doctor has scheduled, by all means, speak up and see if they will agree to a more frequent monitoring.  And yes, you're not going to feel all that great for a while.  A TAH wreaks havoc and everyone has a different recovery time.

Don't be scared, but do get the treatment and attention that you want.  You deserve it.

[dawnlyn]

I agree with all the other ladies, I think you should talk to your doctor about be checked more frequently.  I was dx with 1a, ovca in Feb. 2008. I did not have any chemo I was going to doctor every 3 months with cat scans every 6 months now I see doctor every 4 months and I am still getting cat scans every 6 months.  Please do not apologize for being scared, this beast is very scary....There are many times I have felt that the cancer is back.  Once diagnosed it is definetely a head game.  I hope you get a chance to talk to your doctor.  Let us know.

Love,
Dawnlyn

[lyn42]

Thank you for your comments.

I ALSO think I need more frequent follow up.  

But I guess that I wonder if I'm "entitled" to it.  You all have a more serious diagnosis than mine - my tumour did not rupture and there is no need for chemo.  So I guess that's where I feel "apologetic" for feeling scared.  

You gals are all so brave and strong, and here I am crying.  What gives me the right?  And my doctors say that all the bad stuff (like the anaplastic mural nodule, microinvasion, intraepithelial carcinoma) was all contained within the tumor.  So they say I have nothing to worry about.

Also, there was a "small number of highly suspicious cells in the peritoneal washings."  In fact, the pathologist says:
        
  ...there are a small mumber of small groups of epithelial cells with highly atypical features.  A number of the cells demonstrate vacuolated spaces.  The appearance is worrisome for an ovarian carcinoma.  The slides have been reviewed by other pathologists who have concern for malignant cells.

At the BC Cancer Agency, however, the oncologist who spoke to me said there were to few to tell anything and that I had nothing to worry about.

A gyn onc did NOT do my TAHBSO.  A young gynecological surgeon performed my surgery. Part of my omentum was removed(unremarkable), and "5 mL of red fluid" (peritoneal fluid) was recieved by pathology.  (Is this enough?)  I envisioned "washings".....when I "wash" something I use a heck of a lot more than 5 mL).  

It seems (by the pathology report) that she did a complete staging (I think)...  (though, is 5 mL of peritoneal fluid ENOUGH?)  When I asked her for the stage of my tumour, she said that Borderline tumours are not staged.

WHAT??!!!  (but then, she said that it would be like a 1a or 1c, depending on what a person thought of the peritoneal washings.)  So confusing.    

[dian07]

I completely agree with Marie and Shelly.  I am five years out from my last chemo in October of 2005.  So far so good.....still, there are times when I get nervous.
I think it is the nature of this beast of a disease !  Just as was said earlier, it is a head game that is hard to quit playing !
I strongly agree you need much closer monitoring !  Heck, I get checked once a year starting this year !  Before that my check ups were every six months, the year before every 3 months...before that every two months.....you get the idea.
Anyway.....be proactive.....let your doctor know how you feel.....don't let him pat you on the head and tell you to " go away and be a good little girl" !!  Let those days be over.
Go get 'em girl.
Peace.
dian

[marie3B]

I agree that although you are probably fine more frequent check-ups are needed.  Marie

[Heffmeister]

I had a borderline mucinous tumor removed in April this year. It had ruptured and grown undiagnosied to football sized. I'm having 3 monthly checks with ca 125 blood tests for 2 years I think. This follow up was recommended by a specialist cancer hospital in London by a Professor in ONC-GYN. Hope that help. I'm 32 and had a TAH too it was very scary. Big hugs to you x

[hopeshell]

No, you are not a SAP at all.  Surgical menopause is no picnic.  I also feel grateful for being an early stage when diagnosed.  But, cancer is scary no matter what the stage and it is hard to adjust to the changes of surgery.  I think you are probably fine with the follow-up mentioned.   You could mention to your doctor that you would rather have checks four or two times a year versus one.  If you have an option to change doctors and get more frequent checks than that is an option.  But, odds are truly with you that you are in the clear.  I sure hope you remain cancer free and that days become easier.  I remember how I felt in that first year and it is tough.  But, here I am three years later and it does get better with time.  Feel free to PM me if you want to chat.  I do understand.

Take care,

Shelly

[lyn42]

Thanks for your responce.

In answer to your question, I am in Canada, and yes, I did get a second opinion from a major cancer centre.

When I here words like "anaplastic" and "microinvasion" and "carcinoma" and "sarcoma"  it gets really scary.

But then again, I feel like a whiner since my diagnosis is only "borderline"....so I'm not really entitled to feeling.....sad.  Maybe it's all just surgical menopause.

Thank you for  listening to me.  What a SAP i am.  

[hopeshell]

I don't think annual exams are frequent enough for your dx.  Although borderline tumors have an excellent overall prognosis, there is much debate about the follow-up.  You did have microinvasion which increases your risk of recurrence.  I think you should be followed every three months.  Are you in the US?

Anyway, you must follow your own gut in regards to what is right for you.   If you can seek a second opinion from a large university hospital or cancer center, then that is a good first step if you are uneasy with your doctor's plan.    You have to trust your own body.

That said, I was dx with Stage 1 ovca three years ago and I truly felt like I was having a recurrence on about three occasions over the three years.  But, so far, I am still cancer free.  Cancer has a way with playing with your mind and of course you will feel symptoms related to your past surgery.   It is really hard to tell what is going on.  But, I think you deserve closer follow-up to be on the safe side.  

Take care,

Shelly