Diagnosed with Microinvasive Cervical Cancer

Some of you may have read a past post of mine regarding my leep procedure ...

I came home from the ob/gyn yesterday - as we got the results back from the leep pathology. Prior to leep all the ob/gyn told me was that the colposcopy biopsy confirmed the high grade diagnosis of the original pap smear, it was then when he scheduled me for the leep (which I had done 5 weeks ago now).

Well now, the leep pathology report - the ob/gyn informs me that I require an abdominal hysterectomy because the results are showing microinvasive cancer. He scheduled the hysterectomy for Dec. 16. He then mentioned something about 1mm in trying to explain the microinvasion to me - but I am confused as to what that 1mm means - is that the depth of which the microinvasion has traveled, or is that the amount of biopsy that he took during the leep? He gave me a little piece of paper where he wrote "microinvasive 1mm". I called his office today to ask this very question, but of course he is out of the office now until Friday. So I am hoping that maybe some of you out there could "appease me" and perhaps try to answer some of my questions now instead of me having to wait for him to get back to me (because as I'm sure you understand this has literally devastated me).

Here are some questions I am hoping you all can help me with (of course I have more questions than what I will list here, but I realize that those particular questions only HE can answer lol):
1.) What exactly does it mean when it says "microinvasive"? Would this be classified as 1a or 1b stage cancer?
2.) What are the chances of lymph node involvement with microinvasion?
3.) Has anyone else had hysterectomy for microinvasion? What is the survivial rate of this does anyone know?
4.) Should I be taking the leep pathology report as THE DEFINITIVE diagnosis or should I expect some more unwanted surprises following the hysterectomy? Am wondering why I do not have any further testing prior to surgery (i.e. PET or MRI or whatever).
5.) Can anyone make even an educated guess as to what this 1mm measurement could be?
6.) Has anyone had the experience where they were told they had microinvasive cancer but then upon hysterectomy they are told that it was much worse?

Since hearing this news yesterday I have been crying on and off ... I feel like I am the walking dead literally. I also am questioning this doctor, as he has NOT referred me to any specialist/oncologist. I made an appointment to see my regular family doctor to see if SHE can better explain things to me and maybe even get a different referral from her - but that isn't untl November 16th (as that was the earliest they could get me in)!

I am wondering, if I was further along than microinvasive, surely I would have had some sort of symptoms by now? God this is tearing me apart inside.

Any words of advice, success stories, info, or anything that can be volunteered would be greatly appreciated.

By corellin
Posted October 20, 2009 at 2:34 pm
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Cowgirlcaz -- How awful for you! I can't answer your questions, but I'm so sorry you're going through this, and I can't believe your doctor left you with so many unanswered questions (meaning, that was insensitive of him). Does he have a partner or someone on call who could answer your questions until your doctor returns?

And, I would strongly recommend that you see a GYN oncologist before having a procedure, because it's my understand that perhaps a cone (rather than hysterectomy) might be good enough for that early stage of cancer. I would definitely get a second opinion -- and from a specialist! Again, you have my sympathies -- especially being left for so long with so many unanswered questions.

By CowgirlCaz
Posted October 20, 2009 at 4:17 pm
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Hi corellin.
Unfortunately no, he is the only doctor in his practice.
Throughout the day today I have done some of my own research for other ob/gyns and gyn/oncologists ... and I am shocked to see that unfortunately there are no specialists in my area at all (I live in northern Ontario Canada), and get this - the ob/gyn that I am currently seeing he is the only one practicing in my area as well (so no wonder he is so horribly busy all the time - and no wonder he gets away with such off-handed bedside manners).
I'm petrified of having a hysterectomy (especially in learning I will require a darn tube for my bladder?!?!?) - but at the moment I am more petrified that it is worse than microinvasive. That's why I am wondering if I should take the leep biopsy pathology results as a DEFINITE final diagnosis ... or should I be prepared for some unwanted surprises upon hysterectomy?
I'm appalled that there are truly not many options for us folks living up here ... and definitely I wish I could get some of my questions answered ... or at least qualm my fears some. This is horrible!

By simplynat
Posted October 20, 2009 at 4:46 pm
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Hi Cowgirl, I am very sorry to hear of you diagnosis. As Correlin said, I would definitely still seek a second opinion elsewhere - even if you have to travel. Are you far from Ottawa or Toronto?
Anyhow, I would highly recommend that if further treatment is necessary (if the LEEP did not provide clear margins for the invasion) to look into a trachelectomy. I know that there are doctor(s) performing them in Toronto (and BC). This way you could at least keep your uterus and they could still test the lymph nodes if they were concerned about their involvement.
Sending you hugs and the very best wishes!

By flowershoplady
Posted October 20, 2009 at 5:00 pm
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i'm really sorry to hear that the leep pathology showed cancer. and, i will echo corellin and simplynat in saying that you need to see a gynecologic oncologist! and, need to get a second opinion, discuss options, and get all your questions answered!!!

By chamomile
Posted October 20, 2009 at 9:08 pm
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Cowgirl, I'm sorry that you're going through this, but please know that you do have time to evaluate your options. I know it may be difficult, but you really should see an gyn/oncologist. Ask your doctor's office who he refers patients with ovarian, breast, or uterine cancer to. Surely an ob/gyn isn't treating those cancers too.

Microinvasion is just a really small tumor. It is classified as 1a1 (mine was). A conization (and perhaps your leep) should be able to see if there was lymphatic space invasion (which would be an indication of lymph node involvement but not definitive). I've been told that lymph node involvement is unlikely, but it happens.

Do you know if you have squamous cell or adenocarcinoma? Also, were your margins clear?

By CowgirlCaz
Posted October 21, 2009 at 9:28 am
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Hi everyone. Thanks so much for responding. You guys are absolutely the best support I have found (as I am sure many others will say the same!).

Yes, my husband has his own doctor's appointment scheduled for this upcoming Tuesday, so when he comes home I will be asking him if we can switch appointments (as I mentioned the nurse scheduled me for Nov. 16 or something like that lol - that's too long for me to wait). I will be telling her all the problems I've been having with this ob/gyn and will be asking her for another referral - preferably a gyn/onc. I really like how you put that question chamomile - and I think I will use it with her lol.

I do believe that it is squamous cell, chamomile. But I do not know whether margins were clear or not (like I have said this doctor is horrible where he doesn't give you full information). I called his office and left a message with his nurse - told her all my questions - but she said that he won't be back in the office until Friday.

My understanding though is that obviously the leep margins were NOT clear if he is suggesting a hysterectomy. I am unnerved about the entire process thus far - I am wondering if it is worse than microinvasive (that's why I asked if I should take the leep pathology report as a definitive diagnosis or not). History: abdnormal pap indicated HGSIL. Colposcopy and biopsy confirmed pap - possibly CIS. Now leep biopsy upgraded to microinvasive?!?! What the heck else should I be expecting? Know what I mean? The doctor didn't even mention anything about lymph node involvement from the leep report either. As I say, it's like he tells his patients the bare minimum. I am going to try and get to the bottom of this, but it's so hard when my medical community is so reluctant to cooperate!

I looked into a trachelectomy - and while it looks appealing, I think I am actually leaning more towards the hysterectomy anyways. I want to be rid of this - my tubes were clamped 11 years ago after the delivery of my twin girls so it's not like I can conceive at the moment (even though my new husband and I had decided before all of this that we wanted to have another baby - I was getting ready to go and get the tubal reversed).

My worst fear this very moment is that it is in fact worse than microinvasive (because of this idiot doctor of course), and when I go for the hysterectomy he will botch it because the condition may be worse (as I know that for later stage cancers they recommend chemo and radiation before surgery in order to avoid cross contamination).

Regardless, I will be trying to get my family doctor to start acting on my behalf (as doctors should!), and see if I can get in to an oncologist - even if that means me traveling to Sudbury or North Bay (as those are the closest major cities to me that could possibly have oncologists). Like I say I think that even though just the thought of this freaks me out - I will be having a hysterectomy no matter what. I just want to follow standard "procedure" in case it IS worse than what this idiot doctor is saying. I did glance over and managed to see the term "microinvasive" on the report paper - and he mentioned something about 1mm ... but as I say I don't know how deep he went with the leep - don't know if margins were clear or not.

This really sucks. Hopefully I get some answers and action quickly because I am literally going insane.

By CowgirlCaz
Posted October 21, 2009 at 9:42 am
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simplynat - sorry lol I didn't answer your question.
I am actually quite far from Toronto and Ottawa - Toronto is a total of 9 hours away from me - and Ottawa is about the same I believe. I live in a small town northeast of Timmins - so I'm literally stuck in no-man's land lol! I'm still shocked that Timmins (which is a 45 minute drive from home here) only has 1 ob/gyn, no oncologists to speak of (in any area of expertise), but tons of dentists, family doctors, chiropractors, and optometrists LOL!!! Great lots of resources there ... but none that I need. Geez.

Oh boy - me laughing I guess I'm TRYING to find some sort of humor in all this. Goes to show just how shot my nerves really are.

By corellin
Posted October 21, 2009 at 10:42 am
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Wow, Cowgirl! You're really out in a rural area, it sounds like. I guess those of us in the big city take our wide selection of doctors for granted.

I'll bet it's pretty where you live, though. Sometimes I yearn for the peace of a less densely populated area where trees (or other nature) outnumber people.

Good luck to you finding a doctor. I can understand how scary it is to be in that period of time where you don't know exactly what's going on. I hope you find answers and a definitive diagnosis soon.

PS -- I looked up Timmins on Google Maps and they had some lovely pictures. Looks like you live in a gorgeous spot!

Also, here's a link to some information on the different stages of cervical cancer. If you're truly microinvasive, then that's a good place to be -- treatment could be as simple as a cone. The attached link gives some definitions for "microinvasive."

http://www.gynoncology.com/common_files/Cervical-Cancer.htm

"Treatment

Stage Ia- Lesions which satisfy the SGO definition of microinvasion may be treated conservatively with any of the following modalities:

1. Simple hysterectomy
2. Conization in cases where maintenance of fertility is at issue.
3. Intracavitary radiotherapy in patients who are not operative candidates."

Good luck to you!

By chamomile
Posted October 21, 2009 at 12:17 pm
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I echo what Corelin wrote about possibly needed just a conization for microinvasive cancer with clear margins. This is especially true if it is squamous cell b/c there isn't the concern of skip lesions (like there is with adenocarcinoma). Many many doctors jump to a hysterectomy, when there may be less invasive options for treatment (especially the old-school doctors or ones that aren't trained in oncology). You should request a copy of your medical records (paps and the leep report) so that you can take them to your new doctor and review them for yourself.
Keep us posted.

By Faith2
Posted October 22, 2009 at 1:54 am
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A friend of mine lived in Timmins ... I didn't think it was 9 hours from Toronto, though. She's in Toronto, now. Definitely get a 2nd opinion. I agree with everyone above - I can't stress enough how important it is to be informed - from getting all of your pathology reports (you can also get a 2nd opinion from another pathologist, too) to learning more about the stage you're at, cold knife cones and finally, what a hysterectomy entails and side effects - this is major surgery and should not be entered into lightly nor viewed as the 'end all' surgery so you don't have to deal with this anymore nor a surgery that should be done out of fear. Like Chamomile said, you can breathe a little and arm yourself w/info. It's important to be your own advocate - don't stop until you get the answers you need, and please, get a 2nd opinion. The 2nd opinion, while may be inconvenient, can't hurt and may possibly save you from unnecessary surgery. Keeping you in my prayers.

By CowgirlCaz
Posted October 22, 2009 at 11:10 am
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lol Faith - yes unfortunately it's a total 9 hour drive between here and T.O. Have done the trip many times - it isn't the most fun lol!

Well guys, my hubby told me to switch his doc appt with the one they originally scheduled for me in Nov - so I did that and now I go to see the regular family doc Wed. 28th at 10am. Hopefully SHE can answer my questions - and the nurse there said that she would go to Sudbury (as I was wanting to go to Princess Margaret in T.O.) - she says they're better there.

At any rate I am now on the path to hopefully getting some definitive answers ... and indeed a second opinion! Everyone, including the nurse I spoke to today, is all up in arms because of this ob/gyn I was seeing - we just don't know how far the invasion has gone. None of us understand what the heck this 1mm measurement is lol - especially in now knowing how much tissue was taken during the leep. But hopefully that will be answered Wednesday.

I'll keep you all posted and will come in right away after my appointment to let you know what the doctor has said.

Love to you all ...

By CowgirlCaz
Posted October 22, 2009 at 3:22 pm
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AS IF!!!!
Just got a call from the family doctor office - now the doc won't be in all next week ... so now I am right back to square one and have to wait to see her - booked again now for Nov. 17th!!!! As if .... Why wasn't that said to me this morning when I switched my hubby's and my original appts around?!?!
This runaround that I am getting from what seems to be the entire medical community in this area is REALLY dragging me down. At this very moment I am so depressed I literally feel like crying all over again (not like it would help anyways).
Now I have to wait for a referral - for almost a month - and still have no answers. I mentioned a few posts back that I left a message at the ob/gyn office with my questions and concerns ... but he is out of office until tomorrow (Friday). That office BETTER phone me and have the answers I need tomorrow.... I am on the verge of a breakdown already and I don't even know what's to happen yet!
I have half a nerve to go to the emerg at the hospital here in town after supper - as apparently my family doc is serving time there today. Not only to get some answers ... but to get some anxiety meds or something to calm me down. I have the shakes so bad at the moment I can't even function.
Sorry for venting on everyone ... but I truly right now have nowhere else to turn to. Even my husband is taking this rather lightly - he is giving more concern and attention to the recent outbreaks of swine flu in the local schools than what he is to me.
ARGH I am so frustrated ... and the process hasn't even really begun!

By Jade-81
Posted October 23, 2009 at 12:56 am
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CowgirlCaz, I'm afraid I can't offer any info or advice, but I can certainly empathize. It's frustrating when you don't get answers and all you have to do is wait. Your wait times don't seem as bad as mine. Seven month wait from the time my appointment was made to the time I actually get into my appointment. It's ridiculous! I live in Calgary and the city is growing so fast but the medical community seems to be shrinking. Too many people, not enough doctors or hospitals.

I can relate when you say your husband seems to be taking this lightly. My boyfriend keeps telling me i have nothing to worry about yet since I have no real answers yet. Well, that doesn't mean that I'm not going to worry about what's to come. Don't tell me i have nothing to worry about, just tell me it will be ok.

I hope your search for answers is successful and i wish you all the luck with your journey

By caprimm
Posted October 27, 2009 at 2:59 pm
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I was just diagonsed with cervical cancer on Friday and this website I found was very helpful, informative and easy to understand. I hope it helps. http://www.nci.nih.gov/cancerinfo/pdq/treatment/cervical/patient/

By jo34
Posted November 1, 2009 at 8:31 am
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The joys of living in Canada! Everything seems to be about wait, wait, wait. I live in the middle of Manitoba and it's the same thing. I have a great doctor, but he is so busy that it's hard to see him. I hope that you will be able to get some answers. By the way, how long did you have to wait for you biopsy results?

By CowgirlCaz
Posted November 1, 2009 at 8:47 am
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Hi jo - yeah wait wait wait lol. Like Jade mentioned there's such a shortage of doctors it's ridiculous. Here you have to wait 1.5 months at least to get in to see your family doctor. But I found a solution that works very well when you live in a small town like I do lol - word travels quickly. I learned that my family doc was serving time in the emerg in the hosp here ... so I just went in there to see her LOL!!!! THERE! No appt required lol!

I did get some answers indeed - recall the 1mm it is the actual measurement of the microinvasion. My fam doc explained things better to me (not to mention the wonderful women here in the forum). The LEEP would have taken much of it out - if it didn't they would NOT be able to say the depth. So that makes sense. The hysto is for a precaution - as there could be extremely early cancer cells that cannot be seen even with a microscope. Apparently docs don't think the same up here as in the states - for they believe that a cone isn't my best choice; especially seeing as I cant have children anymore (had tubal 11 years ago). So a hysto is going to be the end result,

I tried to get a referral to go to a specialist or even another ob/gyn, but unfortunately everyone else is just as busy and booked solid, and if I were to go down south to Toronto for example I would be looking at a 6-month waiting list!!!!! So even though I don't like this darn ob/gyn I am stuck with him. Hysto is booked for Dec. 16th (yay what a lovely Xmas gift ... NOT!).

To answer your question jo - it took about 10 days to get my biopsy results, BUT, it took another 3 weeks before I learned what the biopsy results were (due to the doc being booked solid).

P.S.> Jade ... you literally took the words right out of my mouth. It's exactly how I have felt. I am so glad I found this forum .... it's really kept my sanity in check lol

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