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Pickle Eyes 01-19-2009 10:16 AM

Re: Please bring your attention to the posting policy.
Hey, Zoe! Ask any questions you wish!

I had not talked about my margins. I *think* I had clear margins, but can't remember exactly.

When it comes to your discomfort and bleeding, that is normal. Bleeding may not occur right away, but can occur afte 4-10 days and that is part of the healing process. And yes, doing too much hurts. Take it easy. Don't carry/push heavy stuff. Lay down. Pamper yourself!

You know you are still in my prayers! (((hugs)))

zoe96 01-21-2009 04:59 AM

Re: Please bring your attention to the posting policy.
I got my results from the cone biopsy yesterday, and just like every other aspect of this ordeal, the news was even worse than could have been imagined. It showed invasive cancer, with the deepest lesion being 5mm, although there were clean margins at the top end of the cone. Worse, the entire surface of the cervix (1.6cm or 16mm, which was the size of the cone sample) shows a lesion. When I had the colpo on 12/17, there were only two 1mm lesions; now on 1/15 there is involvement of the entire cervix. My doctor cannot explain why this is so seemingly agressive and why it is moving so fast. Now I am even more upset that my doc's office held on to my results from 12/19 until 1/9. That's three weeks, and maybe they could have gotten a hold of this sooner.

I am scheduled to see the oncologist tomorrow to be staged, but from what I know of the FIGO guidelines, the best I can hope for is Ib2....this is a nightmare. I will let you know what my exact diagnosis is. I now have to worry about lymph node involvement, as well as bladder and other problems. I can't believe this nightmare that keeps getting worse and worse. My doc says I did everything right with my previous care and check ups, but after reading various things I think there are a million times I should have run to be checked out, and a lot of red flags that maybe I should have sought a second opinion way before November. I can't help but feel that my ignorance led to this, even though I considered myself to be on top of my medical care. Unfortunately I believed my long time doctor who told me things were fine and not to worry.

I have been reading up on hysterectomy, which breaks my heart since I wanted babies so much. Now on top of probably losing that ability, from what I've read sex is going to be no good either, between obviously losing body parts, problems with dryness, nerve damage, et cetera. I just can't believe how much having this HPV is punishing me. I'm hoping that maybe something can be done to at least preserve as many body parts as possible, even if they are no longer functional. I don't want even the ability to enjoy sex to be taken away from me as well. This is just unreal.

I would say that I hope to post some good news soon, but I am done with the hoping for the best. Each time I have, the outcome has been way worse than anyone could have predicted. Right now I'm just waiting to hear what other hideous thing is wrong with me and what else will have to be taken away.

Drafly 01-21-2009 05:53 PM

Re: adenocarcinoma in situ -- cone biopsy

I am deeply sorry to hear of your most recent news. As someone who has been dealing with HPV induced cancers since 1991 I can truly empathize with your current situation.

What I think is important here is that you do not blame yourself for your current situation. You could only have acted on the information you had at the time. You cannot go back, based on what you now now, and expect that you could have done anything differently.

I have great concern regarding the lax approach to HPV by so many doctors. The more I read from posts on this forum the more it convinces me of their ignorance regarding just how devastating this disease can be. I learned the HARD way!!! I too have felt that I have been taken "piece by piece" over the past 20 years and while I never intended to pose for Playboy it certainly does have an impact on my own sexuality and self esteem.

Do you have anything else going on such as increased stress (separate from this situation) or any medical condition requiring you to take steroids?

I too have had results "held", been given erroneous information, been suggested to have significantly debilitating procedures and have learned to 1) demand answers to things like why your results were held for 3 weeks or 2) gotten second opinions when I didn't feel comfortable with the information I was being given and 3) stood up to doctors whom I felt were ignorant of the disease and its consequences on MY life.

Now with squamous cell cancer having been found in the rectum in Nov 08 after having had invasive squamous cell of the anus previously requiring resection, radiation and chemo, AND previously having vulvar, vaginal, cervical and labial HPV lesions it certainly has been a nightmare as well.

Hard as it may be, try to take it a day at a time or even a minute at a time if you have to. I found that every time I said, "It can't get any worse" it was as though somebody said "Want to make a bet", so I just stopped saying that. May sound silly but what the heck. Have they determined the types of HPV causing the cancer? If so what was it?

You'll be in my prayers. PS I used to live in Branford

Pickle Eyes 01-21-2009 06:45 PM

Re: adenocarcinoma in situ -- cone biopsy
((((Oh, Zoe))) I'm so sorry to hear this news. I am dumbstruck! Know that as I read your post I said prayer after prayer for you! I'm glad you have an appointmett so soon with the gyn/onc. Take your written list of questions. Is there any way you can take someone else with you? It helps to have 2 sets of ears.

I just don't know what to say right now except Dragonfly has some good advice to just take this one day, hour, minute, moment, BREATH at a time. Sometimes it seems to come down to "this breath". You are in my thoughts and in my prayers! ((((((hugs to you)))))

zoe96 01-21-2009 08:10 PM

Re: adenocarcinoma in situ -- cone biopsy
Dear Pickle and Dragonfly --

Thanks so much. I am still in a state of disbelief, and just want this all over with as soon as possible. I really can't take the fear and uncertainty. At this point I'm afraid to hope for anything, because each time I hope for the best and remain positive, then prepare myself for something a little worse, it comes back waaayyyyy worse than I could have imagined. I want to fight this, but feel like I just can't. I'm doing everything I can, yet I feel like no one is taking good care of me and I don't understand why. Although my doctor is very sympathetic, he also doesn't have great follow up, and seems to only respond to me when it's an emotional thing. He called twice to check up on me yesterday, then blew me off today when he was supposed to schedule a CT. I decided to call the office to make it happen ASAP, and couldn't take the appointment (that I got for myself!!) because he never told me I'd have to not eat for four hours. I have barely eaten in the last two weeks, and had just eaten something an hour earlier after not eating since Monday. Just my luck. Now I have to go tomorrow, before meeting with the oncologist. I really hope that we can figure this thing out definitively tomorrow, and get me scheduled for surgery Monday or Tuesday. I just want to know that someone is getting a hold of this and stopping it!!!!

Pickle -- I actually have a herd of people going with me tomorrow. I am very lucky to have a cousin who was a nursing student, and who is going through all of this with me, and is up on the research and my options. Both she and my mom are going in with me initially, and then she will stay with me after the initial stuff, since I don't need my mom sitting in listening to all of my personal concerns and reasons for being against a hysterectomy and other various treatments. She does not need to hear my concerns about sex after all of this! She's my mom and just wants me well, but I don't think she gets the psychological component of it. Luckily my cousin knows my feelings, and can help with that as well. I also feel better that my aunt is going to be there for my mom, since I'm really worried about what this is doing to my mother.

Dragonfly -- thanks for everything, and I'm so sorry that you've been battling this for so long. I can't imagine what you've been through, and hope that one day soon they find a way to keep people from suffering through what you (and all of us here) have been through.

I have to look at my old records, but I think I was never tested for HPV before May 2008. I seem to remember my doc at that time saying this was something new they were doing. That was when I first found out I had HPV, but I guess that doesn't mean I didn't have it before. I had been finishing my bachelor's and then master's while working full time, and there were a couple of rough semesters in there, but then from spring 2007, and especially fall 2007 to March 2008, was under extreme stress trying to finish my thesis (which I did!). I really attribute any breakdown in my immune system to that. I spend 10 weeks from mid-January 2008 to March 2008 with a recurrent cough/sinus infection/flu-ish thing that took me through two or three rounds of anti-biotics. I'm also asthmatic and use an albuterol inhaler, sometimes heavily, sometimes not at all. I also remember being on steroids maybe once or twice because of the recurrent thing last winter. I thought I was doing the right thing, and went to the doctor, but now in retrospect I wonder if that didn't hurt me in the end.

Not sure on which exact strain(s) of HPV I have, but hopefully will get some answers to that very soon.

Small world -- Branford is not far away! Although I would love to change my personal info so it doesn't show so specifically where I live but can't figure out how to change it. If you know, please let me know!!!

Thanks again, ladies, for all your support. I will probably keep posting, since I want others to be aware of exactly what can happen -- not to scare anyone, but to make them realize that despite what the doctors tell you, the worst really can happen and you need to be very proactive with your care. When I first found this board, I was disappointed at how many people start out a scare story and then disappear. Did it work out well for them, or was their story even more horrific? The wondering just makes your imagination run wild....

Pickle Eyes 01-21-2009 08:44 PM

Re: adenocarcinoma in situ -- cone biopsy
Zoe, I totally remember the feeling of being out of control of my body. I SOBBED while waiting to go in for my cone. They couldn't get get my IV started or get the doctor to me fast enough (to sign the release for surgery - had to happen before they drugged me). As soon as I signed the release they pushed in the versed into my IV. I have to say I calmed down pretty dern quickly, but I was in hysterics moments before.

I remember sobbing, "I can't control my body, I can't control what it is doing, I can't control what it will do. I can't control ANYTHING" The nurse, anesthesiologist, doctor, my husband and I think someone else were there trying to comfort me and NOTHING but the drugs helped. I have to say that after I got that out of my system (the hysterics) I felt a little more in control.

I also have to say that going to the gyn/onc was a HUGE relief. I wasn't thrilled about going. Her office is in a "Cancer Center" and that had me freaked out. When I got there, the receptionist sent me to the "financial counselor" to talk about payment. THAT freaked me out and I ended up crying (and not just a few tears) in her office. It was so bad she offered tissue, went and got me a bottle of water and hugged me when I left her office. It ends up, all she told me was "Every time you come you just pay your regular copay of $x" I had myself all worked up thinking I'd need a financial counselor to deal with my cancer. It ends up I just made things worse in my head.

Worrying is totally normal. What I am about to say is easy to say, but hard to follow: don't waste a good worry. Listen to what the doctor says about your treatment plan/options. Learn what you can about your options. And try not to worry.

When I went to my gyn/onc she laid out my treatment options. I had several surgery options and my "need to have surgery by" date was somewhat flexible (within a few months). So I was able to pick a time that was convenient for me and would be less stressful than "right away." I've read so many women say that going to their first gyn/onc appointment was somewhat of a relief because it is comforting to know there is a plan of action - even if we don't like the options.

While I know it is difficult for you to hold hope right now, know that I am holding it for you right now. When you feel you can hold it again, I'll pass it back to you. It is safe with me right now, so don't worry. You'll get it back! (((((hugs)))))

I'm so glad you've got the herd going with you tomorrow! There are so many facets to a cancer diagnosis. And you are right, some people can handle all of the discussion, others only part of it. My parents are 80 and 87 (mom and dad) and they just don't need to know some of these details. I figure as long as I have a place to talk about each concern, no one has to be "all" for me. Get your support from where you can. The important thing is to be supported.

I never found out what strain(s) of HPV I have. I guess it is just safe to say I have at least one strain of high risk HPV (which caused the cancer). I feel like I have been very careful (with very few partners), but you just never know what they have shared, and with whom, and what THEIR histories are. :shrug: We do the best we can with what we know.

Again, you are in my prayers and thoughts! Let us know how the CT and your appointment goes! (((((hugs))))))

zoe96 01-22-2009 04:25 AM

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

Once again thanks so much, for your caring, prayers and sharing. Aside from knowing that I'm probably not going to like any of my options, I'm also terrified at how fast this is moving, and just want my surgery NOW. I also can't help but think how my previous gyn blew it and did not every check me properly after my first abnormal pap or tell me signs to beware that maybe there was a problem. Then my bigger regret is that in August I was going to go to a fertility clinic but decided against it and decided to wait and see....and if only I'd gone, they would have probably found this months ago. The final blow is that my current doctor's office had the report showing the adenocarcinoma in situ from the colpo on 12/19, and they held it until my 1/9 appointment; at the 12/17 colpo he said things looked good upon exam, and my pathology came back with two 1mm lesions. By 1/15 and my cone surgery, he said the entire 1.6CM of cervix were diseased, and the pathology came back with 5mm of invasion upwards (with clean margins) and the 1.6cm diameter did not have clean margins. How I went from two tiny lesions to a completely diseased cervix in exactly four weeks defies explanation. I am sitting here thinking every hour is making this thing grow more and more.

I also have a lot of very personal concerns regarding the effects of a hysterectomy, even though I'm hoping there's some miracle new and innovative treatment that can spare me going through that. I don't even want a trachelectomy, but at this point I'll be lucky if I even qualify for that. Pickel, I think rather than post more scary stuff on this thread I'm going to post a question on the hysterectomy board, and if you feel comfortable enough answering some of my very, very personal questions, I would love to hear your take on it. I read some posts on that board, and none of them were good or comforting, and a lot of them didn't sound like the poster was a very reliable source of info.

I am going for the CT this morning and oncologist this afternoon. I am going to have him give me something to calm me down, because I really can't take this. I just want to be medicated until my surgery, and then I will deal with my mental and emotional well being after I fix my physical problems.

(((hugs))) back to you, and thanks so much for everything. I promise once this ordeal is over (if it ever is, and right now that's not looking possible) I will pay back the favor to whoever else may need someone in the future. Your kindness and willingness to share is amazing.


Pickle Eyes 01-22-2009 06:28 PM

Re: adenocarcinoma in situ -- cone biopsy
I hope your CT and appointment with your gyn/onc went well. I thought of you several times today. I know you'll report in when you can. ((((hugs))))

You know, this reminds me of something I was going to tell you last night. When my regular doctor (a family medicine dr who has done my pap for 5 years or so) got the hrHPV diagnosis she told me it wasn't anything to really worry about - especially with my history of good paps. I was panicking. Well, within a week I was back in her office asking even more questions about HPV and was STILL panicking. She said, and I remember verbatim, "The hrHPV is a long way from cancer, you would have to be diagnosed with CIN I, CIN II, CIN III, and carcinoma in situ before you ever had a cancer diagnosis." First of all, she assumed it would be squamous (carcinoma), second of all, she figured with my history that it would happen sequentially. I've talked to her several times since my diagnosis and she said she still looks at my chart and shakes her head. She didn't fathom that I'd skip from good paps every year for 26 years to hrHPV to adenocarcinoma in situ without hitting the steps in between. I guess she's learned a good lesson. Don't assume! I have to say that before I was diagnosed with cancer she "usually offered" the HPV test to women over 30. After I was diagnosed she offers it to EVERY woman 30 and older! I'm glad she is doing that. I'm not glad I was the reason, but I am glad she is pushing the testing more. I am also confident that she is more likely to send a woman for a colpo than she was before. Hopefully more women will have dysplasia diagnosed sooner. That's my hope.

When it comes to having surgery right away, I don't know how soon they can do the surgery after a cone/LEEP. The cervix swells a lot and has to heal. I suspect the cervix may need 4-6 weeks to heal before they can do more surgery. But it doesn't hurt to ask!

[QUOTE]How I went from two tiny lesions to a completely diseased cervix in exactly four weeks defies explanation.[/QUOTE] That is what I don't understand. And then there is the matter of them holding the information. THAT makes me want to say vile things to them! I guess, they figured it was "just" the two lesions. :shaking head:

I read the hyst board (here at HB) every day so I'll see any of your posts over there.
I will pay back the favor to whoever else may need someone in the future. Your kindness and willingness to share is amazing.[/QUOTE]
See, and I worry about talking TOO much on these boards! ;) Seriously! I check the board DAILY and usually several times each evening. I went through most of my diagnosis by myself. I normally am an open person and share my worries with my friends, but only ONE of my friends knew what was going on medically, and mostly emotionally with me. Other than that I was on my own for 3 months (from HPV diagnosis to adenocarcinoma in situ diagnosis). I can't explain why, I just suddenly became private about it. I remember how afraid and alone I felt when I found the boards and am forever grateful for the women who wrote to me. I hate the idea of a woman coming here, confused and afraid, and not getting a response.

Perhaps it is just my compulsive/obsessiveness! ;)

Seriously, I want to help any woman who comes here to seek help. I'm thankful when I can!

Write when you can my friend!

zoe96 01-22-2009 07:51 PM

Re: adenocarcinoma in situ -- cone biopsy
I had my CT scan today as well as the visit with the oncologist, and both made me feel much better than I have in days. The CT showed no evidence of any abdominal or other invasion, so that was good news. The radiologist and staff were also extremely kind to me, and he even stopped what he was doing to read my films right then and come over and report this to me right away. I was so relieved!! He also got my reports right over to the oncologist, so when I arrived for my appointment he had everything.

The meeting with the onc was incredible. He is the nicest, sweetest man ever! He diagnosed me as Stage Ib (he doesn't differentiate between b1 and b2 for some reason), which of course didn't thrill me, but at least it's still Stage I. Although I don't think so, he says that this was still caught very early, and he actually used the word "curable," which was the loveliest word to hear!! Better still, he said I am a perfect candidate for the trachelectomy. So while I certainly never wanted to lose a cervix, at least that is all I'm going to the pelvin lymph nodes, but that's okay. Best news is I can keep my uterus, and still be able to have children -- although he says they like you to wait a year, but then I'd have to hurry up, since by that time I will be 40. Even if I don't end up using it, I don't want to lose it!!

He did say he wanted me to heal a little more before having the next surgery, and wants to schedule it for 4-6 weeks from my cone, which will put me at the end of February. He said from the looks of things and from the cone pathology report it appears that most, if not all, of the cancer was removed with that procedure, and that what is left is probably nothing more than strands that are not yet lesions, so there's no fear of them being a problem between now and when I have the surgery. So at least I don't feel like there's cancer running rampant through me anymore!!

I also found out that my previous gyn was using the older, not as reliable pap, which is probably why I didn't show abnormal cells earlier. Who knew! If I had any clue, I would have made sure I had the liquid based pap performed. So ladies, make sure your doctor uses the better pap! It makes a real difference in detecting things as early as possible! I was also comforted to find out that my new doctor was apparently very cautious with me, and as the onc said, did a great job in detecting this. So while I'm still mad at him for making me wait three weeks for the colpo results, I am glad that he did all for me that he did.

Pickle -- I decided not to post on the hyst board, as I was hoping I wouldn't get to that point, and also I didn't want to get frightened by posts of those who had bad experiences. I figured I'd cross that bridge if I ever had to -- and so far it's looking like I won't have to. But thanks for being on the lookout for me!!!

I will keep you posted on my progress. I am going to Sloan for a second opinion, mostly to ease my mind and have someone re-evaluate my cone biopsy. My doc said my insurance won't pay just to have my results reread, but they will pay for a second opinion, and the facility doing the second opinion will have their own pathologists analyze my biopsy. So it will be a day in NYC for me, plus a little more peace of mind. I am so lucky to be living here, as there are very few doctors who do a trachelectomy, but I have one right here at Yale, plus NY and Boston each have one guy that does them, and neither are that far from me. It's terrible that this isn't more widely available!!!

I'm also going for an MRI and a PET scan, again mostly for peace of mind, while checking for signs of lymph or other organ involvement, as well as to more accurately place exactly where and how large the tumor is.

Oh yes, and my new doc gave me some much needed Ativan to calm me down....between the bit of good news and the pharmacological assistance, I am hoping to finally get some rest and a good night's sleep!!

Hugs to all!!!!

Pickle Eyes 01-23-2009 07:23 PM

Re: adenocarcinoma in situ -- cone biopsy
I am sooooo glad to hear this news! I've already said a prayer of thanksgiving! :huge sigh: I don't even know what else to say right now. I am just so relieved and grateful that your appointments went so well and that you are feeling better about what is coming up! (((((hugs)))))

zoe96 01-29-2009 06:24 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 08:09 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 06:24 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 09:11 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 05:55 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 06:18 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 09:16 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 01:01 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 06:47 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 07:03 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 :)

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