still confused after surgery feel alone no answers

[mrsmom2u]

I am 40 years old and had surgery 10/4/07 to remove a large cyst on my left overy that ended up as the doctor said being a mess because it was wrapped all around my pelvic area , my bladder , blie etc . my overy was removed and my tube also . nedless to say it turned into about a 4 hour surgery it rupured  during surgery and all was thought to be ok  it was washed out ..  Let me also point out that cancer runs ALL through my family  ,, aunt died of ovarian cancer . another aunt died with breast cancer , Grandmother has colon cancer .. uncle died of panc cancer mom had skin cancer . ( get the point ) aprox 8 years ago I myself had thyroid cancer and beat it ..   back to the issue of now ... the path report was read  and agreed on by 2 people here that it was borderline mucinous with focal changes  my doctor called me and told me that there was alot we would have to do  and would need surgery to remove the appendix other overy etc  but he was going to send it off to alabama to have it reread to be sure  oh it was not staged either going into surgery  so i am unstaged which leaves unanswered questions ..   the next report came back agreed it was the same thing but  said he was not sure  that he saw the focal changes so my gyn is saying on the phone he is not sure if we should dx as even  borderline or if worth taking appendix or not  don`t worry we will talk about all of it next week ..  i am more terrified that  i will not get the treatment i may need  or how to handle my doctor .. i feel  we should go with the first report beings it had two opions on it and rather be safe than sorry with my history ..  i just do not know what to do or think ..  also  all of my pain  has been on my right side to the point i even been se eing a neuro . its in my pelvic deep in my bone but all test are normal can this be related is it something we are missing ? any answers would be appericated thank you so much

[chelan3]

Hi, you should see if you can have your slides reviewed at John Hopkins as they have a dr that specializes in borderline ovca.  It can be a tricky pathology.  I was diag with serous borderline ovca about 5 yrs ago and am fine today.  I had a second opinion pathology by a pathologist that specialized in gynocology.  I agree with Casey, you should see a gyn-onc for a second opinion.  It will be worth the drive.
Good Luck and keep us posted.

[Casey06]

I am sorry, I didn't mean to scare you. Most likely it will be it will be consistent with a borderline diagnosis, which is very positive (nearly 100% survival and low recurrance). I just think you need to get a second opinion, because as they say, better safe than sorry. Anytime someone says the "C" word, you need to make sure you have done sufficient follow-up.

What part of the country do you live? Even if the closest Gyn Onc is a few hours away, it is well worth the trip. Possibly some phone calls and sending a gyn onc your surgery report and path reports will be enough to get a feel for what the gyn onc thinks. Need to get these from your hospital. Just call patient records and they MUST send them to you. It's the law!

MD Anderson in Houston specializes in borderline cancer as does John Hopkins on the east coast.
Call them and explain the situation and they may do a second opinion based on the witten reports (I believe I read this on both of these institution sites).

http://www.mdanderson.org/patients_public/new_patients/display.cfm?id=D602CED8-7483-11D4-AEBD00508BDCCE3A&method=displayFull

http://www.hopkinsmedicine.org/appointments/

Any major cancer center will do, or even a gyn onc. Find one nearest to you.
This is critical. Your current doctor doesn't appear to be capable of handling this. Don't be afraid of making him angry, this is about you, not him.

Please find a gyn onc for a second opinion. It is easier to do than it may appear. just a few phone calls. you need to be proactive, this is not the time to be passive or wait for someone to do it for you.
Once you get an answer, you will get peace of mind.

Let me know if I can help in anyway.

[mrsmom2u]

thank you this is what i am so scared about  and i know how serious it is . my options are so limited because there is no gyn onc  anywhere near where i am at all that is the scary part and how would i know what stage it was  or is ? will i ever know ?

[Casey06]

First of all Borderline Tumors generally have an excellent outcome (nearly 100% survival), but since your surgery was not optimal, I would get to a gynecologic oncologist ASAP for a second opinion.
http://www.wcn.org/interior.cfm?diseaseid=13&featureid=4

I was diagnosed this year with seromucinous borderline tumor, contained to left ovary. My gyn onc did staging (full hysterectomy including both ovaries, appendix, lymph nodes and pelvic wash) and said no spead and therefore didn't recommend much follow-up. I had read that the "standard" follow-up was every 3 - 6 months, so I got a second opinion at a large cancer center, both to confirm path and see if they recommended more follow-up (which they did).
There is not a clear consensus on surgery or treatment for borderline cancers, but the treatment guidelines per ACS and NCCN is as follows:
http://www.nccn.org/patients/patient_gls/_english/pdf/NCCN%20Ovarian%20Guidelines.pdf

Since your tumor was outside of ovary and burst, it may be stage 2C (but I am not exactly sure, but a gyn onc with be able to determine this).

"Stage 2
Stage 2 means the cancer has grown outside the ovary or ovaries, but it is inside the pelvis. Stage 2 cancer can be
2a = The cancer has spread into the fallopian tubes or the womb  
2b = The cancer has grown into other tissues in the pelvis, for example the bladder or rectum  
2c = 2a or 2b AND either there is some cancer on the surface of at least one ovary OR cancer cells are found in fluid taken from inside your abdomen during surgery OR the ovary ruptures (bursts) before or during surgery"

I am not trying to scare you, but this is not something to take so lightly. Find a good gyn onc to detemine what should be done next. As one women often says on theis forum: YOU ONLY HAVE ONE CHANCE TO GET IT RIGHT!
Make sure you see a GYN ONC ASAP, they are experts in gyn tumors/cancers and their treatment.

Here are some links on borderline tumors:
http://www.emedicine.com/med/topic3233.htm
http://ovariancancer.jhmi.edu/lmp.cfm

Good luck and keep us posted.