post-op visit to gyn/onc--suggestions on Q to ask/info to get?

Hi Ladies
I'm 9 days post-op and feeling pretty good (had my first post-hospital BM this morning, no wonder geesh!) And seeing my gyn oncologist tomorrow w/DH.

I've been reading archived posts and the dictionary of terms, etc. And I just want to see if anyone else thinks of some Q/info I need to ask him that I haven't thought of.

Here's what I know and what I've figured out.

My biopsy said grade 2 adenocarcinoma. The oncol. told DH after the surgery (TAH BSO w/ pelvic & aortic lymphedectomy) and me the next morning that they thought it would be downgraded to 1. No tumor invasion of the uterine wall. So he expected stage 1, no radiation.

Two mornings later he says they got the path. report and it showed slight invasion of the wall. And of the cervix. So he thought they would do some radiation, probably vaginal cuff. Then he muttered something about II B, as if disputing it.

So what I've learned (from those conflicting reports and from some of the archived threads I've read here) is that these oncologists always do a review of the slides and recommendations, and deliberate more. He said their practice does this on Wednesdays (as I'm writing this) so tomorrow, TH, I'll have their shared wisdom.

The difference between II A and B, acc. to one source I bookmarked, is A: endocervical glandular involvement and B: cervical stromal involvement. I looked at the Gray's anatomy article on the uterus and saw the diagram showing the glands (similar to bays/inlets on a map) and stroma (the land on a map). What I don't understand is the difference in type of cancer--is it still adenocarcinoma (what everyone says is the 'good' kind to get) if it's in the stroma?

And when my adenocarcinoma has spread to the cervix, does that mean I have cervical cancer? I think I understand that a cancer is partly categorized by where it starts, so maybe I have endometrial adenocarcinoma which spread to the cervix.

I'll be asking him about all this, and about treatment.

And getting a copy of the path report and of the surgery report???

This doc is the uterine cancer doc in the (Walt Disney, no less ) Cancer Institute and regarded highly here in Orlando. When and why would I want to get a second opinion? The squishiness of the dx is a bit worrisome to me.

I will let you all know what the path report says and what they surmised from further deliberations and what he is proposing (not for 5 weeks from now, he said last week).

Thanks, now, for any other Q's/info you can think of that I should ask for. I'm sending this (copy/paste) in an email to my DH so he can print it out at work, as well as that great article from Gray's anatomy.

Thanks in advance...
~susie

Susie,

Glad to hear you're recuperating. You have done an incredible amount of research for being so close to surgery...but then there's not a whole lot else to do while you're recuperating and going nuts.

Nothing is simple when it comes to diagnosis and staging, it seems. For example, I may have both endometrial AND ovarian cancers or just one or the other. Several opinions ftom oncologists and pathologists are inconclusive.

That said, if I do have endometrial and ovarian, then, like you, I am stage 2B for the endometrial. My understanding is basically the same as yours. I think the cervical stroma is the connective tissue between the uterus and cervix. Another factor is the depth of the myometrial invasion in the uterus. Plus I have lymph vascular space invasion (simplistically, not as bad as lymph gland invasion, but not a good thing to have either) and that made me a 2B as well.

You are right, the cancer is diagnosed from where it started, so you don't have cervical cancer.

I also thought that most 2Bs had external radiation. I had 28 sessions. The internal was a maybe and we decided against it. I also had chemo since I had a large tumor on one of my ovaries, and chemo is standard for ovarian cancer.

You'll find tons of helpful info on here, and please write back with any questions.

Super job on the research!

I can't think of anymore questions except to be sure of ALL your treatment options.
AND BY ALL MEANS...ask for a copy of both your surgical and pathology reports.

Best of luck to you for a speeding healing and a good pathology report. Please let us know how it goes

XOXO
K9

I'm curious as to how any of you were first diagnosised? Bad pap, bleeding, etc?

Thanks for sharing your stories and the incredible amount of info. It is greatly appreciated.

Gloria

Hi Susie,
You've reached one milemark - the post hospital BM so you're on the road to recovery. As others have mentioned, it is always good to get copies of you path reports as well as the operation report itself and you doctor usually can provide these.
I found some information on stagingwhich you may find useful; it was taken from:http://www.cancerlinks.org/Endometrial/#grade
"Grade is a degree of differentiation. Normal cells have genetic instructions to multiply with certain speed and to interact with other cells in a certain way. Cancer cells do not behave like normal ones and therefore they are less differentiated. Well differentiated cells that look and behave almost like normal cells are called well differentiated.
If a tumor consists of glandular formations, with less than 5% solid parts it is called Grade I. Grade III consists of more than 50% solid parts, and Grade II lies in between. Normal endometrial lining consists of glandular formations that secrete mucous like substance that nourishes fertilized egg before implantation.
Stage determines how far has EC extended locally. Adjacent organs like urinary bladder or intestines may also be affected later on. At the beginning of illness, EC consists of cells located in the lining. As tumor grows, it affects the muscular layer of the uterus and then the cervix, vagina and other organs and tissues.
Stage 2:
2a - tumor has invaded cervical mucosa.

2b - cervical tissue is affected."

Please let us know how your appointment goes.
s, peggiesue

gloria, K9, peggiesue and twforone

Thanks for the support and info. I bookmarked the cancerlinks.org site; I hadn't seen that one. I esp. like the visual representation of the staging.

I will definitely ask the many questions about the treatment...why this kind of radiation and not that...and will report back so that I can get more takes on what he's recommending.

And curious glorious...I figured out something was wrong when I was bleeding...spotting really. I'd been in perimenopause for a year; I'd had two periods several months apart and then nothing for 5 months, then spotting as I came out of general anesthesia from my spinal emergency surgery in Nov. *punch* Then nothing, then some more.

In my next life, I'm getting more frequent blood tests for hormonal levels. I had that done two and a half years ago but then thought I'll just see how it goes.

I also noticed after the fact that what was on my light days pad was some blood and some other fluid; I assumed it might be urine (hehehe when I laughed) but in reading, I saw that the discharge for EC is often not blood.

In retrospect, I don't know how much of the later 'periods' were just the tumor growing. Hindsight is 20/20.
~susie

Suzanne,

I am scheduled for a TAH with Lymphenedtomy on 18 April with the practice you have your care with. I have been diagnosed with endometrial / stage one (well differentiated) -

This diagnosis came from a D&C after 3 months of post menepausal spotting. But as I think about it, I have had discharge for the 2 years since my last period.

I will be praying for you and your family.

leek

Hi Leek (and anyone else reading this)
Well, well, it's amazing how we can meet people in HS who just live a few minutes away... I like our doc. And I'll be sending good thoughts your way on 4/18.

My post-op app't. went well; DH wrote down answers to lots of questions I had, and reminded me when I still had a topic or two to bring up. The doc was edging towards the door but was willing to entertain any topic. The LPN who took out my (titanium!!) staples talked at length about my concerns w/ BM's so I could just talk to the doc about the cancer, the staging, etc.

Leek, you said your cancer was stage 1...I think you meant the grade of the biopsy was grade one, since the staging (think spread, metastisizing) is done only after surgery when they can look at our insides and send parts to the pathology labs. Grade 1 is very good news on the biopsy, though. Almost like normal cells. Mine was grade 2, then he said after surgery he thought it might be grade 1. But we didn't talk about the grade during my appointment, only about the stage/spread and implications for further treatment.

The doc said the path report said stage 2B, which means going into the cervix. But he drew a diagram and showed how my cancer had not traveled down the endocervical canal as far as the cervix, just about halfway down. He described all these statistical probabilities for recurrence, saying why he thought the vaginal cuff radiation therapy is the best thing to do. He said chemotherapy was becoming slightly more used in similar cases here in the states but b/c of the position of my tumor and other things I can't remember, he didn't recommend it. Twoforone, maybe all you chemo and external was also for your ovarian cancer?

He also said the lymphodectomies showed no evidence of disease (NED..am I using that correctly?). Good news there.

I left w/o the two reports...yikes...DH was good at prompting me up to a point, hehehe... But I am going to call on Monday (they were closed on Friday for some reason) and request both of them be sent to me--they didn't blink an eye when I asked for the path and the surgical reports.

Mostly at the end we (meaning the LPN and I) were getting the one-pager for my HR dept. at work to read correctly...part-time light-duty after 4 weeks (I'm milking this) and then I'll get the full release at 6 weeks when I see him again and the oncological radiologist, same day (May 5).

After I get the reports, I'll put some of the lg. up in HS so you gals who have been through this can see the exact wording.

I learned that there is a "tumor board" meeting every Wed. for gyn oncologists to discuss new cancers. A gyn new friend who runs a menopause center across from the hospital told me she didn't hear about mine on Wed. and the doc was out the door before she could ask him about my case. But just knowing the docs are in communication about our innards makes me feel more confident.

Thanks for all of your thoughts ...and Leek (and anyone else approaching surgery) keep your worries at bay. It sounds like yours is early. Fingers crossed for you.

Gotta go. On DH's laptop; mine is acting funny. Trying to get a friend of my 19-year old DS to help. ~susie

Hi, Susie,

Glad that your post-op appointment went so well. Sounds like you got all your questions answered and were comfortable with the rationale for the internal radiation given the particular facts of your case.

My case is kind of the reverse of yours at least as far as staging is concerned. At the time of surgery in 1999, my gyn-onc opened me up and saw a bump on my cervix and assumed the tumor had invaded the cervix, so he did a radical hysterectomy with pelvic and para-aortic lymphadenectomy. He clinically staged me as a 2B and my operative report states that my tumor had invaded the cervical stroma. However, on pathological examination, the pathologist found that the tumor had not invaded the cervical stroma, so he downgraded me to a 1C.

My gyn-onc had reported my case to the state tumor registry as a 2B (based on his clinical staging), so when I asked if he would change the clinical staging to correspond to the surgical staging, he said absolutely not! When I asked why not, he said because he thought the pathologist was wrong. Thereafter, I had all of my slides and specimens sent to a different pathologist at another institution, who also staged it as a 1C (found no cervical involvement). Despite my gyn-onc's 2B clinical staging, I really do deem my "true" staging to be the surgical 1C since endometrial cancer has officially been a surgically-staged cancer since 1988 for those women who have undergone surgery.

However, due to several other poor prognostic factors, including the fact that my tumor invaded approximately 80% of the thickness of my myometrium, I had extensive lymph-vascular space invasion, and the fact that my tumor arose in the lower uterine segment, I needed both internal and external radiation.

As my gyn-onc explained, the external was needed as a result of the deeply invasive tumor and the internal was required due to the fact that my tumor arose in the lower uterine segment. Your gyn-onc is correct that chemo is starting to become more common for early-stage endometrial cancer. In fact, based on the results of a recent study done at the Mayo Clinic which found that people like me with outer 1/3 myometrial invasion, among others, have a 46% probability of recurrence even after state-of-the-art treatment, if I were diagnosed today rather than six years ago, I would most likely be a candidate for chemo to prevent distant recurrence.

Do you know yet whether you be receiving the low dose or high dose vaginal brachytherapy? I had the low dose which required a two-day inpatient stay in isolation, but the majority of women on this board now appear to be receiving the high-dose internal radiation on an outpatient basis. My gyn-onc said there is no difference in the effectiveness of either the low or high dose brachytherapy for endometrial cancer, and the high dose seems a lot more user friendly!

Best of health to you,

MoeKay

MoeKay
Your very long reply has given me a lot to think about. Thanks so much.

It seems to me that our cases show how different the clinical (i.e. the pathology report) and the surgical staging determinations can be; the docs disagree w/the pathologists. In mine, though, the doc is saying it's less than the pathologist says, and in yours it was vice-versa. Hmmm...

So I'm not supremely convinced about the decisions, but until I get the reports in hand, I can't be 100% sure of what he said. I do remember his saying that it would be outpatient brachiatherapy, so I guess that is the high-dose.

He talked about the side effects being possible shrinking of the vagina, for which I've read somewhere that frequent intercourse (3-4 times a week) with DH and/or stretching by other means would be called for. I'd love to hear from someone who has had this internal radiation. Getting rid of that side effect sounds like it could be fun!!

On a more serious note...I do have some notes my DH took, but not yet the reports:

2mm depth myometrial invasion
How deep is the wall???

also 2mm (endo)cervical invasion, upper end.

I thought these were very small numbers--am I right?

He said the % risk of recurrence w/my profile was 5-10%, which he said would not warrant chemotherapy, which has its own risks.

I will definitely run the real numbers by HS once I get the copies of the reports. And show them to the gyn-doc new friend who seems to go to these tumor board meetings.

I'm thankful for all the incredible info everyone has...and in awe of how learned we can become when all of a sudden it's our bodies at stake. So thanks, MoeKay, and everyone else, for your past and future answers and support. I'll be back with more info.
~susie