Question about diagnosis

[Teresa222]

I just got a copy of the written Final Diagnosis of my cancer.  I knew the approximate size of my tumor, but not the exact size.  I was told by the doctor after the surgery that it was the size of a "small melon."  After calculating the dimensions and drawing them on paper, I feel it was more the size of an orange.  It was l3x15x11 cm. I cannot believe my abdomen did not pertrude in any manner. I had a tiny amount of fluid, the report says. They did find cancer cells in the fluid, thus the Stage 2.

The puzzling part of my report is that one doctor says I am Stage 2c, the other says I am "incompletely staged 2c clear cell adenocarcinoma.  Could this disagreement be because the surgeon did not biopsy any lymp nodes? he said they all "looked normal." or no definite pathologically enlarged lymph nodes. (as is written on the report)
Do any of you have any idea what the situation is here?  Do lymph nodes HAVE to be biopsied in order to Stage a patient or is this up to the individual surgeon?
Teresa

[cirella]

Hi Teresa,
It seems strange that if cancer was found upon initial biopsy that they didn't go a little further just to make sure.  Sometimes things aren't as they seem just by looking.  I know I would always have that nagging doubt.

[Teresa222]

Jan's ONC is the same doctor who did my surgery.  I loved him..he is so sweet.  He has an excellent reputation, even over at Vanderbilt.  I changed doctors only because I needed to have my treatments at Vanderbilt. It was a decision based on logistics.  My husband is treated at Vanderbilt.  Therefore, we needed to have our care done at the same vacilities.  You'd be amazed at how many times we go there and both of us get treated for something, or go to our ONC's.  It's a family sort of thing!
Teresa

[JC145]

Just as another example:  I had my ovaries, uterus, & omentum removed.  The GYN/ONC removed spots on my bladder & cul-de-sac.  He left spots on my diahram and mesentary.  When asked why he did not remove any lymph nodes, he said the look good, so he didn't touch them.  I HAVE to assume he does this all of the time and can tell when something doesn't look right.  I am not convinced the staging is really all that important.  Chemo would be the same for all pretty well.  I do think the pathology is of utmost importance for determining what may work and what may not work.  Just my opinion.

Jan.. will be anxious to hear what your MD says this week.

Judy

[dian07]

My oncologist biopsied not only lymph nodes but my diaphram, intestines, left and right adenexal tissues, omentum etc and found no malignancies except in the ovary that was punctured causing leakage into the abdomen...... thus, cells in the peritoneal lavage.....I was staged 1C because malignancies were found in the one ovary and the washings....I had the usual carbo/taxol......all that was back in '05.......I continue my 6 mo checks and so far so good.......I thought it was necessary to take several biopsies in order to actually stage a cancer......
Peace.
dian

[crecco]

I think that a lot of it all depends on what they find and when. I was dx and staged after blood work, a ct scan and a biopsy on a "knot" beside my left breast, started on chemo a week later and did not have surgery for 6 more months. As far as I know, no lymph nodes were ever biopsyd or removed. I have had a few in my stomache that were enlarged at one time, but they have since gotten smaller.
  Chris

[onniebay]

Angie,
I agree.  My oncologist feels like yours that I was somewhere in stage 1, but because he did not do any biopsies before chemo he does not make any promises.

[silver&gold]

I actually think it must come down to the surgeons own opinion to a certain extent , I find this quite worrying as I hope I have not been under staged . I have read and learned from other ladies experiences that maybe not enough biopsies were taken . As I live in the UK we do not freely have access to our medical records and scan reports etc so basically we just go along with what we are told to a certain extent.

Angie

[onniebay]

I don't know how they can say they staged you.  I'm not staged because they did not do that.  They found mine by accident when they took out my ovary because of endo.  At that point staging would not matter.  My oncologist explained that even if he staged me and I came back 1A I was still going to have to chemo.  There is a 20% percent chance that I had a leak when they removed that ovary.  My gyn had no idea that it was cancerous and thought it was just endo cyst.

[marie3B]

I don't know why they took more than 20.  I guess they just took samples near each tumor site.  I had a huge mess in there and I think they were being extra cautious I have had no problems with the nodes gone so far.  Marie

[vegas2cr]

Visual apperance of my omentum apron showed no evidence.. BUT when biopsied it was full of microscopic cancer cells... they removed and tested many lymph nodes...lAll were positive for cancer.... I can not imagine why a doctor would not remove the omentum apron and biopsy lymph nodes.... I wonder sometimes like with you not having the lymph nodes biopsied what they are thinking?  And why  R

[StillFighting]

Hey sweety, glad the surgery went well. In my experience lymph nodes are almost always removed even if they look healthy, they normally take at least 1 or 2 for biopsy. If they looked healthy great, but really there's no way to know 100 percent with out that biopsy. Be happy they didn't remove any. lymphodemia is no fun.

[silver&gold]

Jan , I had a hysterectomy but my omentum and no lymph nodes removed , I thought that the omentum was routinely removed with OVCA and the lymph nodes  biopsied too. The reason they gave me was that all looked ok in surgery.

Angie

[Jan214]

Teresa, I will ask Dr W about that when I see him on Tuesday.  I have no idea what the answer is, but now that you bring it up I too wonder about the lymph thing.  Dr W said that 80% of women have cancer cells outside of the ovaries and only 20% have all the cancer completely contained within the ovaries.  I was in that 20%.  However, I did have a lymph node removed from the crook of my left leg and I am now wondering how he knew that one lymph node was diseased.  Is there a test for the whole lymphatic system?  Could he see it when he had me splayed open?  That really is a good question. If it weren't for that one lymph node I would be a 1B instead of a 3C so obviously he had to biopsy it in order to classifiy me as a 3C.  He said that as hard as it was to get my ovaries out intact (didn't want to spill anything) it was harder and took longer to get that lymph node out from around nerves.  It added 2 1/2 hrs to the surgery.  It still hurts a lot in that area too.

Talk about protruding, you have seen me, you'd think having ovaries that were 11 & 14 cm would have stuck out to next week on me, but nothing here either.

I answered your email before I came on the forum, but you had wondered what they would do if it showed malignant cells.  So, what did they say about that?  Do you have to have chemo?

I wouldn't worry about the melon vs orange sizing. You are probably right.  Men have a tendency to overestimate the size of small round things.

Marie:  Why did they take out 20?

Angie:  I can't imagine them not taking out everything.  Did they give a reason?

Thanks for putting up this question Teresa.  I don't think it is something that we all every thought about.
Jan

[marie3B]

I thought they sample biopsied lymph nodes even if they looked okay routinely.  I know that they told me mine looked fine, but they removed more than 20 and all came out clean.  Marie

[silver&gold]

I did ask about it Teresa and was told that everything in surgery looked good , I thought that everyone with OVCA had the omentum removed because it is one of the places that the cancer goes first. Im not sure wether clear cell cancer has the same appearance as other types of OVCA but I know that when I asked about the lymph nodes being biopsied I was told they weren,t because everything looked good and all washings and other biosies came back clear. I don,t think that doctors tell the truth sometimes and I wondered wether that was one of the reasons that I had to have the chemotherapy because they thought I didn,t have cancer until pathology revealed it 3 weeks after surgery and maybe because they didn,t biopsy lymph nodes thought I should have the chemo  just incase . Who knows , these doctors can tell you a bunch of ---- sometimes. I wasn,t very impressed with mine anyway .
Angie

[Teresa222]

Angie,
Did you ask your ONC any questions about your lymph nodes and omentum?  I changed doctors after the surgery, so I never got an opportunity to ask.  I called their office to ask and was told my new ONC would have to inquire for me.  I consider both my former ONC and my current ONC, tops in their fields.

My omentum and myometrium,  were both biopsied according to this report.  I wonder what determines whether or not lymph nodes are biopsied? Someone out there must know????
Teresa

[silver&gold]

My lymph nodes weren,t biopsied either and my omentum wasn,t removed which worried me, I was told that everything looked good .

Angie