Follow Up for Borderline Cancer

[lactac1224]

Anyone who has had a borderline tumor removed have any information on what follow up is recommended?  I had a stage 1A removed in 2006.  I followed up for 3 years.  My gyn/onc moved away and I am not sure what type of follow up I need at this point.  I do not have a regular gyn since the gyn/onc took over.  I had a total hyst and both ovaries removed so I am not sure if I need to see a gyn or not or if I should find another gyn/onc.  My primary care doc has no idea so any recommendations would be appreciated.  Thanks!  Laura  :)

[Maimai999]

I know it's been a long time since this post was posted. But I want to ask is your health still good?

[Maimai999]

I know it's been a long time since this post was posted. But I want to ask is your health still good?

[Nerdymom]

Thanks something :)  They were actually very fast.  I specifically told the path dept at the hospital who was sending my slides to have the results sent to ME, but alas, they sent them to my gyn-onc or I would have had my answer in about a week.

The sent slides from 3 areas: tumor on left ovary, tumor on right ovary and right adnexal mass.  I got back just diagnosis from Robert Kurman.. no wordy impressions or descriptions.  Just left ovary: atypical proliferating serous tumor; right ovary: serous cystadenoma; adnexal mass: atypical proliferating serous tumor.  

Was yours that brief?  Still, worth the 225 though not to see micropapillary or carcinoma anywhere in those brief words from Kurman. :)

[somethingroyal]

Yes, Nerdymom, my slides did go off to Hopkins for a second opinion. They were first looked at by the Franklin Square pathologist and then that doctor decided to consult with Johns Hopkins.  The doctor that read them at Hopkins is Robert Kurman, who seems to be quite expert in borderline cases.  My research showed his name A LOT in conjunction with borderline research.

It took about a week. Granted, the two hospitals are relatively close to each other (about 20 miles) and it was the first pathologist's decision to consult, not mine personally.  I think they did phone my doctor, and also followed it up with a report.  

It is $225! I can still see the bill in my mind's eye.  I think it is very much worth it. You want to get an eye like Kurman's on it.  

Let me know if I can be of help.

[Nerdymom]

I know this is slightly off-topic but this is a good borderline thread so here goes...

Has anyone sent their slides to Johns Hopkins for a second opinion?  I requested mine to be sent about a week and a half ago.  My surgery was 8 months ago, but I just have this nagging worry that it's not just borderline serous.  The path report reads "does not have a micropapillary appearance" in one area, but then in another area it says "displays prominent tufting and micropapillary growth".  How can it say both?

So anyways, any of you borderline ladies send for 2nd opinion?  If so, how long did it take you to get the report and did it come via a letter or a phone call?  I requested it be sent directly to me and not through my doctor because his office is a bit unorganized.  I'm paying for this out of pocket. (Its $225.)

Thx.

[Heffmeister]

Thanks everyone. I will try get my ca 125 checked. I'm not sure if I am 1a as said in orginal lab report or 1 c because I had a rupture. Washings were clear however.

[Sharon2714]

just chiming in 1c serous borderline tumors positive wahings (7/2008) TAH/BSO  .. follow up every 3 months these first two years now on 6 month follow up until year 5 then yearly ... my ca-125 was elevated (126) and then decreased (4) post op ... was told it would increase because the cells that form the ovaries are always present and can go askew in the future and that was also the reason to keep seeing gyn/onc

[lactac1224]

Thanks everyone!  I think I will call to make an apt.

[gls2824]

I had a borderline serous tumor removed during a TAH/BSO in January 2009.  Staged 1C (positive third washing).  For the first year I had 3 month follow-ups (internal exam, pap test, CA-125 test).  Now I go every 6 months.

[gah_70]

I have heard a couple of different theories on this.  But the opinion from the doc I trust the most was that even though there may not be any "parts" left to examine, there is still the possibility of vaginal and vulvular cancer, as well as the vaginal cuff created deep inside when a TAH/BSO is performed.  He even still did the occasional pap smear even though I have no cervix.  

A CA125 measures a protein produced by ovarian cancer cells in women for whom a CA125 is a good indicator. So you don't have to have ovaries to get a CA125 reading.  That's why it is primarily used on women undergoing chemo to see how well chemo is working (while realizing other abdominal irritation, even the benign stuff, can make the number go up).  If any cells at all were left during surgery, they have an opportunity to grow.  I would suggest finding another GYN/ONC just for peace of mind if nothing else.  If he/she gives you the all clear, then at least you'll have a more experienced doc's opinion. Good luck to you!

Gail

[Heffmeister]

I'm in the UK too and have a mucinous cyst removed in April this year which had ruptured. I later had a TAH after lab work showed it was borderline. Im having 6 monthly gyn visits but just exams no scans or even blood tests I think. My doctror said I need to be aware of any signs or symptoms as a way to pick up a re-occurance but the first time I had signs or symptoms before my tumor was the size of a football then ruptured!

How does a ca 125 test work if you have no ovaries?? Does it still pick up a re-occurance because it stemmed from the ovary? I've never been told I had a ca 125 at all yet.

[lactac1224]

Thanks everyone for the input.  I was seeing a gyn/onc but he left the state.  At first I was seen every three months and had a few CT scans and always a CA125 and exam.  The weird thing is that my CA125 was never elevated and they didn't find the cysts the first time during exams.  So, I think it is weird that that is how they follow up.  Anyway, it has been 4 years so I just wasn't sure if I should bother to get a new gyn/onc or see a regular gyn.  I feel like I really don't have any parts left for a gyn to check!  Has ovaries, uterus, cervix and more removed so not sure what doc to go with.  Maybe I will at least try another gyn/onc.  I wish docs had more structured follow up for borderline tumors.

[lsindelar]

I had stage 2c (both ovaries and some spreading into pelvic cavity) borderline serous tumors in April 2010. Received surgical treatment (total hysterectomy, appendectomy, omentum/lymph node removal) by a gyn/oncologist at a large hospital - considered best in region for gyn/oncology. My follow up is every three months but that may be because of the staging results (spread to pelvic cavity and positive abdominal washings). There are several gyn/oncologists at the hospital where I was treated so I would see one of the other gyn/oncologists at the same facility if that were possible. If you doctor doesn't know the follow up protocol at least he or she should be able to refer you to a gyn/oncologist. Good luck!

[chelan3]

I too, was diagnosed with Stage 1A and had a total hysterectomy.  My follow-up was done by a gyn (no gyn-onc available in my province in Canada).  I had follow-ups every 6 mos for 5 years.  The follow-ups consisted of a regular gyn exam, an ultra sound and a yearly CT scan.  After 5 years.  I was given the all clear.  My CA125 was not a reliable marker for me so it was not drawn after the first year.  
Honestly, if your family doctor can't even make a recommendation on this, I'd find another family doctor.  
If you have access to a gyn-onc I'd definitely make appt for follow-ups with him/her.

Take care,
Debbie

[charlie12773]

Hi there Laura

I live in the UK and had a borderline mucinous tumour removed in January 2010. I had a TAH/BSO at the time and have been told that the recommended follow up is one gynae visit a year for 7 years. Personally I do not think that this is frequent enough and intend speaking to my consultant about this soon.Some ladies I have made contact with are being seen every 6 months.However it seems that in the States borderline patients are seen more often. It also depends on where the surgery was done i.e. outcomes are better if full staging is done , the age as younger ladies may want to keep the other ovary and whether or not the cyst burst during the op.

I was initially told that it looked very like a massive stage 4 OVCA but an MRI indicated that it was just a cyst. After my op there was a very long delay before I found that the cyst was actually a tumour. I was not operated on in a cancer centre so my seemingly simple questions took a very long time ( eg do I need any more treatment?) to be answered !

Have you made a full recovery otherwise ?

Take care

Charlie

I fully intend seeing a gynae at least every year for the rest of my life , these things don't recur often but it's not impossible.