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zoe96 01-29-2009 07:24 PM

Re: adenocarcinoma in situ -- cone biopsy
I just wanted to update on where exactly I am and what's going on. I am actually meeting with the gyn/onc at Sloan Kettering on Monday, and am very excited and anxious, as he does the Sentinel Lymph Node mapping that I hope can save my lymph nodes and also confirm that I can get a trachelectomy. I'm actually copying what I put in another post, so sorry for those of you that may have read this already. I'll separate it out so you don't waste time rereading! I just wanted to put it in this thread in case someone is interested in how a situation like mine is progressing, so there's a complete picture.

As for what's going on with me right now, I got the results from yesterday's MRI, and was told that: there is no more cervical tumor visible, so it looks like my cone, even with its scanty margins, actually got it all; there is no involvement of the pari or para-something or other, or any other organs; there is one small spot on one lymph node that is not necessarily a concern, but was, as I was told, something to look at -- but the person that interpreted the report for me is not a gyn (my guy is at a conference today and unavailable, so I had to rely on this other lady) and told me she doesn't know what, if any, significance that finding is, but that it was also not noted as a I'm a little concerned about what exactly it is, although I was told it's not necessarily a bad sign.

This afternoon I had a PET scan, and unofficially it is clear. I have to wait for the official report tomorrow, but the tech was unbelievably sweet to me and let me have a look at the results on the screen, and told me that everything looked like normal glucose uptake, meaning there was nothing to suggest that there was any cancer, although he qualified it by saying he's not a medical expert, which of course he has to do. What did give me a little confidence in his opinion, and is making me a little hopeful, is that firstly these guys see this stuff all the time, so medical degree or not, they know when something's off. But even more important, in my opinion, is that I asked if he could give me a heads up before the procedure even started, and he told he me really couldn't, et cetera; I accepted that, and did not expect him to say a word. But when I was done, he asked if I'd like to come see the results. He was very nice, and I doubt he would have tried to reassure me if he had any suspicions, especially since I didn't ask for the results and didn't expect it since he'd already told me no. SO, I'm not going to relax until I get the official word from an oncologist, but at least so far things appear to be going favorably. I was/am still concerned about that one node and the 5mm whatever they flagged, but from what I understand, 5mm is something that would show on the PET, so if it's not showing up there, I feel a little better that whatever it is is probably benign.

So, again I'm afraid to get too excited. Will keep you posted on what happens next!

One thing I want to say to anyone going through this is you really need to keep on top of your doctors and making sure your tests get scheduled ASAP. I've found that if you ask politely, most people are willing to help you out and give you test results and appointments ASAP, but you have to ask! Pickle has said this too -- you've got to call and keeping asking for your test results, and someone will give them to you!! But if you just wait, you are only causing yourself more anxiety. I felt a *little* more in control by keeping on top of my own progress, and making sure that I'm getting all the tests I possibly can, and as quickly as I can. Until I heard that there's no evidence of a cervical tumor anymore, I literally thought I could feel it growing and spreading inside me. Now I certainly know I'm not out of the woods, and know I have more treatment and surgery ahead of me, but at least now I don't feel like my body is plunging out of control.

I'm also amazed at how much conflicting information there is in the medical community -- or rather, the very different approach different facilities and doctors take with regard to cervical cancer. It doesn't appear that a lot of docs offer up a trachelectomy as a solution, so please, if you read this post, look into that option if it is available to you!! I see no reason to take perfectly good body parts and go through any more extensive surgery than is absolutely necessary. Ditto on the lymph nodes! Of course if something has to go, it has to go....but if there's a method of reliably checking it (and SLN mapping is, I guess, perhaps still questioned by some) then why not at least explore it. I can't believe the approach that the docs in my area take, where they go in and take everything out, hoping they can tell you yes, they were perfectly fine. I'm not a medical professional, so obviously this is just my opinion....but I do think there's some options out there that aren't often offered up for consideration, and would just urge everyone to explore everything that's available to them.

Pickle, if you are reading this -- hope you are well!!!

Hugs to all.

Pickle Eyes 01-29-2009 09:09 PM

Re: adenocarcinoma in situ -- cone biopsy
Zoe, I certainly AM reading! I am so curious as to how your appointments go. You are certainly in my prayers!

I've had a few rough days this week (work wise) and have been in a funk - perhaps because I was diagnosed with HPV 1 year ago and it started this sense of my body spiralling out of control - at least until my hyst in June. I know I'll get over the funk and rough days, but it isn't easy waiting for that time to come. Hmmm. Sounds a lot like waiting for test results, doesn't it. ;)

Hugs to all!

zoe96 01-30-2009 07:24 AM

Re: adenocarcinoma in situ -- cone biopsy
Hi Pickle --

I was getting worried about you, not seeing any posts!!! Glad to hear you are okay, but so sorry you are in a funk -- to which you are completely entitled, and which is totally understandable!! Right now I'm sitll worried about dealing with all of this, but long term I'm wondering how/if I'm ever going to be able to *really* relax....I'm afraid I'm always going to be looking over my shoulder for some bad news. But, I suppose if part of that keeps us vigilant at monitoring out health, then it's not entirely a bad thing.

Hope work eases up -- remember, it's just work, and not the REALLY important stuff!!!

Maybe this will help ease the year ago began a terrifying and serious ordeal for you; but, it was also a lucky time, in that your condition was caught early enough that you were able to be treated and restored to good health! So maybe instead of focusing on the horrors and fear of last year, you can look at it as whew, what a close call, and thank goodness someone caught this and took good care of me, how lucky I was then got it then. Now, you will need to copy this and remind me one year from now when I am in the same funk/fear pattern :)

Have a great weekend, and glad to hear from you!!


JessicainCanada 01-30-2009 10:11 AM

Re: adenocarcinoma in situ -- cone biopsy
Hello Ladies :-).....

I feel exactly the same way Zoe!. I had posted in another thread that I felt "hyper medical" and now I am always worrying about every lump bump and ache that originates from the lower abdominal area. Pickle called it "cancer-head" :).

On a more positive note like you say we are just going to be more vigilant in future with ANYTHING out of the ordinary. I hope in one year we will ALL be able to have like Pickle some peace of mind and moving forward into our lives, even if it is with some "funk" about the scary time we all are going through right now. I can deal with funk from time to time, but roller-coaster of feelings I/we am going through as we speak CANT last forever :)

I do hope you feel better Pickle!. If it makes you feel more positive, you were the FIRST person not including my doctor that was able to give me some hope/peace in my heart. You help so many women who come here looking for answers and someone to talk to. I think that even though our doctors are professionals and for the most part good @ their jobs, the BEST advice/help comes from others who have gone through the same type of health issues.

I like to think that God ( I am christian), doesn't put ANYTHING in our paths that we cant handle and those obstacles have a reason. In any event not including faith as I realise that ours all differ, Pickle you have been brought here to help which you DO!.

Plus side of a very negative situation for us all is we will all be stronger women in the longterm.

Big hugs and Prayers everyone :).


Pickle Eyes 01-30-2009 06:55 PM

Re: adenocarcinoma in situ -- cone biopsy
Thanks for making me tear up Zoe and Jess! (((((hugs))))) They are good tears! :)

I have to say that work, in my mind IS important stuff because I teach. On the other hand, I have to remind myself that I do what I can, make the differences I can, and that's it. The chaos and red-tape and politics (which have increased EXPONENTIALLY^10) aren't worth my worry, time, or life-force! Thanks for reminding me of that part!

Now, you will need to copy this and remind me one year from now when I am in the same funk/fear pattern :)

Will do! Heck, I thought you were saying I needed to copy that so *I* would remember. I grinned when I saw that you want me to remind you! :wave: lol

[QUOTE=JessicainCanada;3868113]Hello Ladies :-).....
I can deal with funk from time to time, but roller-coaster of feelings I/we am going through as we speak CANT last forever :)

Plus side of a very negative situation for us all is we will all be stronger women in the longterm.


Jess, the roller-coaster *does* slow down, the turns aren't as sharp and the drops don't take your breath away so badly (because they aren't as steep) - though one comes up every now and then. Life DOES calm down. I distinctly remember wondering when/if it would ever stop. Keep telling yourself that "this too shall pass." It does.

I totally agree that difficult situations make us stronger. I believe they prepare us for that which comes in the future. I just really hope I don't ever have to use this strength ever again! :flexing arm muscles:

(((((hugs to you both))))))

JessicainCanada 01-30-2009 07:18 PM

Re: adenocarcinoma in situ -- cone biopsy
I have calmed down ....I'll say 80% since the initial "significantly abnormal" term was spoken in December and getting the words I needed to hear in January on the 21 st that I did NOT have to officially use the cancer word YET!. It's weird I KNEW something was WRONG, I wasn't even really all too shocked when Dr.Groot told me about the CIN3!. How I have no idea!. And whats even weirder is that the "symptoms", I was having such as occasional post coital bleeding and a strange discharge once in a while were bacterial vaginitis. The reason I had gone in for a pap was because I thought I had a yeast infection.

Just a question did any of you have any "symptoms", prior to being diagnosed?
Weird how our bodies talk to us eh!. I hope and pray everything went well with the node business which I am sure it did. I'd never even heard of that pre Health Boards. I'm still determined on the hyst, because somehow I know that's right for me.

Hope everyone is having a positive as possible day!. The weather here in Northern BC Canada is for once above -30 ! LOL :)

Pickle Eyes 01-30-2009 10:16 PM

Re: adenocarcinoma in situ -- cone biopsy
Brrrrr, it has been around 35F here and I am miserable. I couldn't survive in temperatures like that!

The ONLY symptom I think might have been related was the lymph nodes in my neck (right under my jaw all the way to my chin) were slightly swollen for quite a while. The doctors never commented when I went to them. Of course, that could be MANY things.

That is the only thing that I think was odd prior to the diagnosis.

I am dumbfounded at my diagnosis. I've about finished trying to figure out why/how I developed cancer. There is no rhyme or reason.

bonesygirl 01-31-2009 02:01 AM

Re: adenocarcinoma in situ -- cone biopsy
WOW! I just got through reading the entire thread of posts (took about an hour) between zoe and pickle and I just wanted to say THANK YOU for the abundance of info and each of your stories. I am sorry you both have gone through all of this. I was also diagnosed with adenocarcinoma in situ in and had cone Jan 08. I have had 2 follow up paps (well, 3 if you include the one I got last week- don't know the results yet) and both had indicated that I was "within normal levels" whatever doctors verbage that is. I also wanted to mentioned that my doctor never did that ECC, I think thats what its called. Now, I wonder why he didn't?? And I also wonder why they don't use that test, along with a pap for girls with adenocarcinoma diagnoses?? Hey, I have a quick question.. I have had about 5 or 6 reacurring bacterial infections since my cone. I wonder if there is any correlation between cervical cancer and those damn BV? Yeah, BV.... oh that's a hole other pain in my *bottom* (i won't go there!)Sorry, now I my just rambling. Anyway, I've just discovered this health board about a week ago, so I am not very good at posting things, feels a bit akward. I just wanted to put my 2 cents in. Again, thanks to you both for all your information. I will probably read this again in the morning when my eyes are a little less droopy and tired. G'night. Oh yeah, cross your fingers for me for, what they say is a good pap. We all know how ugly ADENOcarcinoma is and how it CAN hide out sometimes.

zoe96 01-31-2009 07:47 AM

Re: adenocarcinoma in situ -- cone biopsy
Hi ladies!!

I finally got the results from all my testing -- CT, MRI and PET scans....and the final answer is there is no more cancer, it has not spread anywhere else (they were pretty sure of that after the CT, but now it's certain) AND the lymph node I was worried about from the MRI did not show any evidence of cancer from the PET, so the doc said that's good. I had a terrible time finding out my results from the PET yesterday, with the doc's office staff assuring me someone would call by close of business, and then no one did. I was hysterical, literally getting sick with worry, and could only assume it was bad news and no one wanted to call me. Thankfully I called the answering service and told them I absolutely needed someone to get in touch with me right away. The doc on call did, then tracked down my results. She explained that no one called me because the PET results were "unclear." Of course I panicked!!

For those of you who don't know what a PET scan is, it basically measures the amount of glucose uptake in the body, and those areas literally light up on the scan. They then have to evaluate what is normal uptake, and anything else that isn't is a sign that there's cancer, because apparently cancer sucks up the glucose. So in my case, the report said there was "mild hypermetabolism" around the ovaries...I was like what the heck, ovaries? But the doc said that looking at the MRI explained what was going on. I also have polycystic ovaries, and the cysts will affect the glucose uptake, so that's what they were seeing on the PET. Between the cysts and the fact that the slightly unusual uptake and the size of the ovaries was symmetrical for the two of them, that's confirmation that that's all that is. I guess the intern or whoever that was assigned to call me back didn't know all that, so they choose to just let me wait. I'm so glad I was pushy and called, because I would have spent a miserable weekend of agony waiting and assuming the worst. Ladies, this is your peace of mind, so call and be a pain in the backside if you must!!! Better some doc's office thinks you're a pest than you spend one minute more worrying and waiting!!!

For the moment, I've gotten all the best news I could hope to get. Now I go to my Yale onc Monday morning, and he will explain in more detail where I am medically. Then in the afternoon I go to Sloan, which I am so looking forward to, since I'm hoping he will save the lymph nodes! Will keep you posted on that!!!

Jess -- to answer your question about symptoms ahead of time, I had nothing that I considered unusual until I had the bleeding incident in November, which we are still not sure whether it was a miscarriage or not (I had both + and - preg tests). BUT, in retrospect I wonder if something was a symptom, and here's why. I have always had very irregular periods, and usually have to take meds to bring one on. As a result of not getting one sometimes for months at a time, sometimes I would get a little bleeding or bloody discharge, and it would go away sometimes in a day, sometimes I'd have slightly bloody discharge for weeks at a time. I had repeatedly gone to my previous gyn about this, and she said it was because I wasn't having regular periods, so sometimes there'd be a build up of the uterine lining. She also had done ultrasounds and a uterine biopsy or two, and those came back normal. When I would take the meds and get a period more frequently (sometimes I'd go 4-5 months without one), the spotty bleeding/discharge would stop. Ironically, I hadn't had this problem since the spring, and was diagnosed in Dec/ go figure. Honestly, I doubt that that problem was related to this, given my history and the fact that that happened for probably 10+ years.

The only other "symptom" I can think of was twice I had post-coital bleeding, once in Dec '07, but really (and sorry for too much info) I think what happened was I was about to get my period and sex and all that got it going, because I started bleeding right after and then had my period for the next few days (and I was due for it, since I hadn't had it in a while). In Sept '08 I kept lightly bleeding after sex, but well, we were pretty active so I figured it was overuse!! I live in the US, and my boyfriend lives in France, so we hadn't seen each other since when I got there in Sept, well, you get the picture. So honestly I wouldn't even consider that a symptom either, because my poor body was at that point just a little unused then abused :)

Ladies -- the roller-coaster is the worst, I agree!!! I know I'm not quite out of the woods, and need more surgery and need the lymph nodes to be microscopically clear, so I'm still afraid to totally relax. But I can say this: keeping on top of my doctors to get info and making sure I got all my appointments as soon as possible really helped me. It was almost easier to focus on making sure I got what I needed, since I didn't have time to worry as much about what was going on physically. And like I said, waiting for someone to get back to you is torture, so be a pest if it helps you get your answers quicker. I was on the phone ALL week...but in the end, I know exactly where I am medically, and have the appt with the doctor I want. I really think it helps to take control yourself instead of being at the mercy of someone else.

Hope everyone has a fantastic weekend and stays warm!! Jess, you got me beat on the cold, although we've been below 0C for a while now, and the dang snow keeps coming and coming!!!

((hugs)) to all!!!

zoe96 01-31-2009 08:03 AM

Re: adenocarcinoma in situ -- cone biopsy
I posted this same thing in another thread, but for those that don't see it there, here's a repeat:

One more thing....I know I sound like a pushy little thing, making a pest of myself with the docs and labs and all....but I've worked in court for the past 17 years, and honestly, the squeaky wheel is the one that gets the attention, I hate to say it. The difference is to be a very sweet, polite squeaky wheel, and then people don't get so annoyed. And I've found that most people who are dealing with cancer patients are very sympathetic, and are more than happy to do what they can to help you. So for you timid ladies who think gee, I can't be a pest like that -- yes, you can. Be nice, let people know you are afraid, and don't be too shy to ask for help. Just make sure you pay it back to someone else down the road, and help someone when you can. Then it will be okay that you took help from someone else :)

JessicainCanada 01-31-2009 08:30 AM

Re: adenocarcinoma in situ -- cone biopsy
To answer your question Bonesy I have no idea!. But SINCE my original BV diagnosis in Dec(I'm SURE I had it long before that) I've had it come back 3 TIMES!. From what I understand its because your (sorry to be gross guys!) vagina has an even at best very tremulous alkalinity levels that dont like to be messed with and when we disrupt those levels with sometimes even sex,creams,bubble baths, or in your case "strange" bacteria from healing courtesy of the surgery.

I dont know what your doctor prescribed you, but he initially(first two times) gave me something called Nitagel, a LOVELY intravaginal cream that sticks to everything and in my opinion DOES NOT work :).I went back mad as mad after my biopsy cause yet another BV infection,because lets face it the symptoms are NOT fun, and demanded after reading ONLINE that the Nitagel often doesn't work to clear it up that I be given the oral antibiotics.

I'm rambling lol :). Anyhow it DID get cleared up courtesy of the antibiotics AND my pharmacist recommended taking asadophilis bifilius (I buy the little yoghurt drinks with the AB culture instead of the supplement)......Everything seems to be "happy" in that area and as an added bonus the AB culture ALSO helps lots for your immune system and digestive system.


[QUOTE=bonesygirl;3869042] Hey, I have a quick question.. I have had about 5 or 6 reacurring bacterial infections since my cone. I wonder if there is any correlation between cervical cancer and those damn BV? Yeah, BV.... oh that's a hole other pain in my *bottom* (i won't go there!)QUOTE]

JessicainCanada 01-31-2009 08:35 AM

Re: adenocarcinoma in situ -- cone biopsy
Hi Zoe!.....I'd say things are looking on the sunny side for you all in all :). I've been following all of the threads for everyone here, and putting prayer or if you want to call it positive thinking into it.:). I'm always glad when its not my worst fear being confirmed by the doctor, because like I said in another thread I've turned into a "cancer head"....I'm glad you have something positive to work with, which I am sure will be a long string of positives in the near future.

Hope your weekend is off to a good start on that note :)


Pickle Eyes 01-31-2009 12:07 PM

Re: adenocarcinoma in situ -- cone biopsy
Good afternoon ladies! :puts tea pot down, with cups, and homemade cookies:

Bonesy girl, you are welcome.

[QUOTE=bonesygirl;3869042]I also wanted to mentioned that my doctor never did that ECC, I think thats what its called. Now, I wonder why he didn't?? And I also wonder why they don't use that test, along with a pap for girls with adenocarcinoma diagnoses?? [/QUOTE]

That's what *I* want to know. I also want to know why it isn't required when a woman over 30 has a positive HPV test, but has good paps. That is precisely the type of woman who needs an ECC (endocervical curettage). I attribute it (and the HPV test) as being my 2 life-saving tests!

I don't know much about BV except that it doesn't respond to over the counter meds and that it is often misdiagnosed. That is about the sum of my knowledge on it. :dunce:

Zoe, I'm so glad you were able to get some results before the weekend. The weekend wait is horrid! I received my AIS and AdCA diagnosis on Fridays and clearly remember the panic state I was working up toward if I *didn't* get those results. It gave me the weekend to scour the internet and learn what I could (and learn to be careful what I read!).

When it comes to pestering the doctor's office there is a delicate balance. I made sure to tell whoever answered the phone that I planned to call once a day, then each time I called I said, "this is today's call". I'm wondering if you'll be billed for the after hours call. I suspect you will and I suspect it will be totally worth it. I'd think so.

When I was being diagnosed I had another drama or two going on in my life. I think I focused more on it than I did on the cancer. My hubby and I were having some problems (and the HPV diagnosis made things escalate - but things have worked out - interestingly enough within a month or two of me having surgery to remove the cancer). I felt more in control of the marriage issue than I did the cancer issue, so it got more of my emotional energy. Interestingly enough, the rocky times with my marriage are entwined with the cancer diagnosis and I don't know which one was a more painful journey. I feel like it was the marriage struggles. I'm glad to say both the marriage and post-cancer-diagnosis and surgery are healing nicely. :)

JessicainCanada 01-31-2009 05:53 PM

Re: adenocarcinoma in situ -- cone biopsy
Thanks for the tea and cookies Pickle!. One needs them when reading these threads sometimes:).

I am off to my best friends for a UFC (Canadian is going for the title) sleepover night along with some very bad for you food .

I hope everyone finds some peace/rest over the weekend....



bonesygirl 02-01-2009 12:19 AM

Re: adenocarcinoma in situ -- cone biopsy
THANKS a million for your response to my thread about my recurring BV after my cone. Frustering, YES! knock on wood though, it had been 2 whole months without one!!! YAY! it's great when your vagina feels and looks like it should!! oh the relief. I've just been taking daily, PB8 pro-biotic acidophilus capsules (everyday, 2 pills) It seems to be helping!!Anyway, still waiting for my pap results. It's been one week and one day. I'm going to call the doc on monday or tuesday and bug em. :)

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