HealthBoards

HealthBoards (https://www.healthboards.com/boards/)
-   Cancer: Cervical & Ovarian (https://www.healthboards.com/boards/cancer-cervical-ovarian/)
-   -   adenocarcinoma in situ -- cone biopsy (https://www.healthboards.com/boards/cancer-cervical-ovarian/661707-adenocarcinoma-situ-cone-biopsy.html)

JessicainCanada 02-01-2009 02:39 PM

Re: adenocarcinoma in situ -- cone biopsy
 
LOL Bonesy!....Glad you kicked the BV in the rear end. Congrats on two months I hope mine stays "normal", until I have the hyst and then I'd like them to put a zipper with a lock on that particular body part that's cause me and the other ladies here so much grief!! :).

I'm going to do some research regarding the BV bit and if there is any facts regarding the BV/HPV/Cervical cancer stuff. I'm thinking that the HPV MUST mess with your vaginas PH levels on a massive level if its able to give us all the C word....

zoe96 02-02-2009 06:16 PM

Re: adenocarcinoma in situ -- cone biopsy
 
I've really got to stop posting my updates on multiple threads, so my apologies again. Below is an update on how my appointments at Sloan and Yale went today (I bracketed them off so you won't read it twice -- it's the same as the info in the other thread):

*******************************
Here's my day: I went to Yale in the morning, and got the good news that my MRI and PET are definitely clean and all looks good. They were running *way* behind, and I had to catch the train to go to Sloan, so my visit was short, but the long and short of it was we discussed the nodes again, and the doc at Yale doesn't really believe in SLN mapping...but told me to go see what I learn from Sloan. I also think I might have misunderstood him the first time, and he takes about 8 or 10, but not all of the pelvic lymph nodes. Also, my guy at Yale does the procedure laproscopically, which is a big plus. Now for my experience at Sloan.

The SLN mapping still takes a few nodes, and like Yale, they scheduled the surgery, take the nodes, check them, then go on to the procedure. What they do that's different from Yale is they inject a blue dye, and then take the nodes that the dye drains to (this is the Sentinel lymph node mapping). The nice thing is that they sometimes will take less, and they dissect that first node that the dye goes to (the Sentinel node) in a different and more thorough way than they do the others. Apparently tradition node removal methods just cut them open and do a quick check, whereas with this they actually dissect it microscopically to really check it out. So, although it does sound better than Yale's method, it's not enough to sway me from what I consider worse than the LN "problem."

The doc at Sloan does this *abdominally* -- at least in my case. Which means he cuts through the abdominal muscle, and healing is much longer. You stay in the hospital three days (as opposed to overnight with Yale, although Yale said they would keep me longer if I wanted to), and you go home with a foley catheter for ten days....I am sticking with Yale, who is supposedly one of the best guys with the laproscope, and that is the procedure I want.

The doc at Sloan also mentioned something about if he didn't get a clean margin on the trach he would do a hysterectomy, although after much discussion that was still up for debate. He said the chances are 70% that I'm fine and there's no more involvement -- but of course that means there's a 30% chance that there is, which scares the heck out of me. This was the first time I heard anything about the possibility that even though my CT, MRI and PET show no tumors, there could still be micro involvement farther up the cervix. He said the edge of my margin from my cone wasn't clean, so that's why that's a possibility -- although I'm fairly certain that my top margin *was* clean, although just barely.

In any event, the doc is super, super nice, but I just got the feeling that since I was there for essentially a second opinion, he wasn't completely familiar with my case -- and I really think he is wrong on my margins from my cone. My doc at Yale is very thorough, and all he has ever mentioned is the nodes, and if he thought there was a chance the margin on the trach wouldn't be clear, I would think I'd have heard of that before today.

In any event, this day turned into another bout of panic and worry, and I feel worse, not better,after my meeting with Sloan. I'm not sure what I'm going to do, although I'm nearly positive I'm sticking with Yale. I had such high hopes for Sloan, but in my case, I felt a little like I was herded through there and was just a number and statistic (granted, they are huge, and there were a ton of people there). I will give them this though: they took me right in, and there was almost no waiting. At Yale you could grow roots waiting for your turn (both times I had to wait 1 1/2 hours), but in general I just felt better leaving Yale than I do now after having left Sloan.

************************************

So I am not winning on keeping the nodes, no matter what -- although it was clarified that they don't take them all, usually about eight to ten. And the doc at Sloan said the ones they take are not usually the ones that would cause lymph edema, so that was a good thing.

I am definitely not interested in having an abdominal surgery rather than a laproscopic one, so that's the biggie for me. So now I'm back to worrying that they'll find something wrong with the nodes when they remove them, AND worrying that there is some microscopic involvement farther up the cervical canal, despite having clean CT, MRI and PET scans....I just feel like I'm always going to be looking over my shoulder for something nasty to pop up. Although I guess at this point, it is all up to what they find in the surgery, and I've gotten all the reassurances from testing that I can.

So my plan now is to schedule surgery with Yale, hopefully for the end of February. I still want to clarify some things with my doctor there, but given all my options (or lack thereof), I think this is my best bet. Now I need to keep hoping for no node involvement, and no further evidence of cancerous cells anywhere in the cervix when they do the trachelectomy....

Will keep you all posted.

((hugs)) to all.

Pickle Eyes 02-02-2009 07:10 PM

Re: adenocarcinoma in situ -- cone biopsy
 
(((hugs to you, Zoe)))

I wish I could help you figure out your best option, but the truth is no one knows that. Sometimes we just have to make our decision on what feels right for us. You are still in my prayers!

zoe96 02-03-2009 05:36 AM

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

Thanks so much! Right now I'm just trying to remember all the good news that I've gotten lately, and remember that the chances of there being more problems are small....although that doesn't totally comfort me. I think I am going to try to schedule my surgery at Yale, and then I will just be done with this. Nothing I do at this point is going to change things, and I just need some finality. Will keep you posted....

((hugs))

JessicainCanada 02-03-2009 06:44 AM

Re: adenocarcinoma in situ -- cone biopsy
 
Hi Zoe! :) We right here with you. The waiting and unknown are unbearable @ times. I will keep you in my thoughts today as I also have to go and have some testing to go have done pre op that is weighing heavily on my mind :).

Take care~

*****Hugs******

zoe96 02-03-2009 03:51 PM

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

I'm thinking of you, and wishing good outcomes from the testing. The tests themselves aren't bad at all...it's just waiting to find the results that is nerve wracking.

So after all the drama created by going to Sloan yesterday, I decided to call my doc at Yale so I could discuss what went on at Sloan and get his opinion on it. I also want to schedule my surgery, which will almost certainly be the last week of February. Luckily I have an appt. with him next Monday, 2/9, so we can discuss scheduling the surgery and ironing out exactly what will be done, and every possible if/then situation so there'll be no surprises.

HOWEVER, it occurred to me to check out UConn, since it is covered by my health insurance and is also not far away. There is a woman there that does trachelectomies. I contacted her office today, and her assistant/scheduler is the sweetest thing ever. Long story short, she brought my info to the docs in the office, and they are anxious to see me -- yay!! She also gave me an appointment for next Monday -- so again I'll be running from Yale to the next appointment, but that's just fine with me. I'm going to do what I have to do. I figure another opinion on how they do the surgery, and what my particular circumstances are, certainly couldn't hurt. I'm also interested in what they offer for radiation services in the awful event that I need it....although I'm really hoping that's not in my future. They have some new technology to pinpoint tumors with very directed radiation, so I'm hoping that if god forbid they find the worst during surgery and I do need radiation, maybe they can do something that will still spare fertility. I'm almost hesitant to look into it, since I know I need to stay positive and hope for the best. But I'd rather do a little extra homework now and never need it than have to scramble later. Hopefully later all I'll be doing is recovering and being grateful for having gotten a good result from surgery.

So, I'm basically in a holding pattern until next Monday, but at least I don't have to wait that long. I'm scheduled to go to Florida with my family the next day, and stay there through the following Monday....so I'm hoping to square away as much of this as I can before I go. Plus I'll be getting back a week and a half before I will hopefully be having surgery, which will give me just enough time to figure out whether I'm going with UConn or Yale. I feel weird going away with all this going on, but my family goes every year...plus I was supposed to be in Paris last month, and am still crushed from not having gone. I actually had my cone on the day I was supposed to leave....so I figure since I can't have surgery until after this trip anyway, I may as well go. Maybe being somewhere with no snow will do some good for my soul!!!

Alix76 02-03-2009 05:20 PM

Re: adenocarcinoma in situ -- cone biopsy
 
Oh Zoe, more waiting? Seems to be the way with this nonsense (as I call it) doesn't it?
I hope you don't need abdo surgery and I really hope you don't need a hysto.
I'll be thinking of you and you better let us all know what happens on Monday.
You've been such a great help to me. I thought all I had ahead was a hysto until you told me about the Trach procedure. Imagine, I could've just said "take it all" without your advice.
You're a gem and I'm hoping everything works out as well for you as possible.
Lots of love & hugs.
xxx

Pickle Eyes 02-03-2009 06:37 PM

Re: adenocarcinoma in situ -- cone biopsy
 
[QUOTE=zoe96;3872311]Nothing I do at this point is going to change things, and I just need some finality. [/QUOTE]

I was trying to write that last night, but couldn't figure out a way to say it. I kind of figured you were at that stage. I assume you plan to schedule it pretty quickly (within a month or so). I remember hitting that level of thought process. Schedule it, get it over with, time to move on. (((hugs)))

Pickle Eyes 02-03-2009 07:13 PM

Re: adenocarcinoma in situ -- cone biopsy
 
[QUOTE=Perfectone;3873006]I'm scared now that I have just read this post of yours but I know there is always a chance that it could happen. [/QUOTE]

Please know that I am not quite 1 in a million, but I *am* 1 in 10,000 (or is it 100,000) to have ended up with cervical cancer. The saving grace for me was my doctor doing the HPV testing and then the gyn doing the ECC. I really think, if I had to have a cancer diagnosis, it was best case scenario. I was symptom free, a hyst removed all cancer, my gyn/onc is convinced I can go back to annual exams in July (only 1 year after my hyst). I really couldn't ask for anything better with this diagnosis.

Stressful, absolutely. Did I feel I was pushed to the edges of my patience, nerves, faith, and hope. Beyond a shadow of a doubt. But, as the saying goes, "this too shall pass." Some days that was the only phrase that made me hang on.

Sometimes all we can do his hang on and breath. Oh, and learn what you can. This too SHALL pass! :angel:

zoe96 02-14-2009 07:56 PM

Re: adenocarcinoma in situ -- cone biopsy
 
Hi everyone -- I just figured I'd give a quick update, and pass along some interesting info that I've recently learned. I apologize in advance, since this is probably going to be a long post! I'm going to put a break in it so you can just skip to the part about what they do in a trach, and not read about the other stuff :)

First of all, I went for another opinion at the Neag Cancer Center in Farmington, CT, which is part of the University of Connecticut. Dr. M. B. is a most fantastic lady!!! Aside from having a great background in cancer care and being one of the few docs around that does a trachelectomy, she is a very caring, patient and dedicated doctor. If I wasn't already treating with my doc at Yale (whom she highly recommends!) I would have no qualms about treating with her. So anyone in the New England area looking for a second opinion, do not rule out UConn!! I had a much better experience there than I did with Sloan, and although they're not one of the "big" names you hear, their credentials can rival the other guys.

She also gave me some interesting facts/stats about adenocarcinoma, which I had not come across before. First, she told me that most adenos are the result of HPV 18. I have been completely freaked out by reading all of the terrible things that HPV 16 can do (such as throat/oral cancers). So, I intend to have my pathology tested so I can find out exactly which strain(s) of HPV I have, and hopefully I won't also have 16!! (PS - docs don't seem to be much concerned with what strain you have, and consequently I've been told that insurance may not pay for this testing). Since learning about this adeno/HPV 18 connection, I cannot figure out why DNA testing to determine which strain isn't a normal part of the screening, precisely so that those of us with 18 can be checked more thoroughly for adeno, which tends to hide....but that's another lecture for another day.

I've also been told that adenocarcinoma tends to NOT spread to the lymph nodes as quickly as other cervical cancers, especially when caught early. Positive nodes could screw up my whole plan for trachelectomy and children, so this has been a big concern of mine.

There is also a theory out there that surgery (including a cone biopsy) actually helps the body fight off the HPV that caused the problem in the first place with adenos!! Obviously we are all afraid of recurrence, and especially since I'm going to lose most of my cervix with surgery, I am concerned about the HPV then attacking the vaginal wall, et cetera, and my seeming inability to fight off HPV is a concern. So, I am hoping that this theory is true!!

**********************************

So, at this point I am scheduled for trachelectomy surgery on 2/25. This is how the procedure has been described to me. Since Yale doesn't consider Sentinel node mapping standard of care right now, my doc is agreeing to use the dye and do the mapping to make sure he gets those nodes (since I do believe in it, and I specifically asked for it)...but then he's going to take a few more, as that's his way of doing it. In total he's going to take 15-20 (instead of the usual 40 or so), for a variety of reasons. They will test the nodes while I'm still under, and as long as they are clear, he will continue with the trachelectomy. For a variety of personal reasons, we have agreed that he will do the trach, and not test the margins on that while I'm under (generally they will send a frozen section to pathology to quickly check for a clean margin; if it's clean, they close you up; if not, they proceed to a hysterectomy). So, the downside is I will have to wait about a week after surgery to get the final pathology on my trach...which will be one tough week. But personally, I could not accept going under and not knowing what would happen. I asked why he couldn't still send a frozen section to path so that I'd have an answer when I come to, but he said that if the margin was close, the freezing process would damage the edge of the tissue so making a call on the margin might be compromised....so I will just have to wait, and hope that my margins are nice and clean and clear. Incidentally, I'd have to wait that long anyway, since they further dissect the nodes after surgery, so you are not really "all clear" until that final report anyway.

I was also told that the surgery should be about 2-2 1/2 hours (Sloan told me 4, but they do it abdominally). My doc is doing is laparoscopically, with a robot assist, so I'll have five scars -- two on each side of the pelvis, about two inches in from the hip bone, and then another between that area and the belly button, and then one inside the belly button (he usually does it about an inch and a half above the BB, but he looked at me and said he'd do it inside to hide it, and would even put it on the under side so my belly button ring would hide it!!). The scars will range from 8 to 15 mm, so they are really small!! It's truly amazing how they can do all this. I'm going in at 7:30 a.m., and should be going home the next day, although he said I'll be on a catheter anywhere from a few days to six weeks...which didn't thrill me. Depending on how I'm doing, I will either have to self cath until I don't need it anymore (which he said should get me off it sooner), or they'll send me home fully catheterized, and they'll recheck me at my two week check up post-op....so we'll have to see how that goes.

So now I need to stay calm, and stop imagining the worst. I'm so afraid they'll find something else and say I need more surgery, or radiation, or both....I feel like all of this has happened so fast, and things got bad very quickly. So now I'm just hoping that my bad news is over, and this is my road to full recovery -- with uterus and kids in my future!!

Sorry this is such a long post....

Hugs to all, and Happy Valentine's Day!!

Pickle Eyes 02-14-2009 10:03 PM

Re: adenocarcinoma in situ -- cone biopsy
 
That is such interesting information, Zoe. I figured certain strains of HPV caused adeno vs. squamous cancer, but had never heard one way or the other. And trust me, I've searched various times since last April. I look forward to reading more about it later on (as the word becomes more available).

I didn't realize you would have to have a catheter for so long after the trach. Why is that? With the lap/hyst you don't need it that long. Do you know what this needs it for a longer period? Just curious.

[QUOTE=zoe96;3885499]
So now I need to stay calm, and stop imagining the worst. I'm so afraid they'll find something else and say I need more surgery, or radiation, or both....I feel like all of this has happened so fast, and things got bad very quickly. So now I'm just hoping that my bad news is over, and this is my road to full recovery -- with uterus and kids in my future!!
[/QUOTE]


Spend the next week or so cleaning your house and getting your life situated so that you have an easy time of it when you come home. How long will you be off of work?

If you are going to have restrictions on bending, stooping, and lifting I strongly suggest you get one of the GopherIt/GrabIT thingies they sell for people who can't pick things up from the floor easily. I bought a great one at Walgreens after my hyst for about $10. I loooove it! I don't need it to pick up stuff from the floor but it sure comes in handy getting things that fall between the washer/dryer and the wall! ;)

(((hugs to you and the other ladies))))

zoe96 02-15-2009 06:33 AM

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

Thanks for the practical tips!! One lucky thing, I am tall, so I don't have to stretch much to reach most of what I'll need!! You are totally right though....I am going to get my house in order (it's long overdue, anyway!), and I actually have a lot of work commitments to catch up on, so between all of that I'm sure the next week will fly.

I was surprised about the catheter situation myself, but from what I understand the reason is this: during a radical trach they take a lot/most of the parametrial fat alongside the vagina, and part of this involves poking around the ureters, et cetera; as a result, sometimes you lose some feeling temporarily, so they cath you since you may not feel like you have to go, and obviously they don't want pressure building up anywhere down there. So according to Sloan, they cath you automatically until your two week check up! But, my doc at Yale says they will see "if" I can go on my own before I leave the hospital (some people have problems as a result of the anesthesia, which is why even after you've been out for something as simple as a cone they make you pee before you leave, to make sure you can!). If I can pee on my own, then they will teach me to self cath (yuck), and I can see how it goes, and do it as necessary. That way I can take it out and use it when/if I need it, and they'll recheck me at my two week follow up. Ideally that's what will happen, because if I have the sensation that I need to go, then I don't need the cath and will be off it very soon. However, if I'm not feeling it, then I'll need to keep the cath until I do. I guess it's all about how much trauma your body can take and how it reacts.

Another thing I wanted to mention is I found out the reason for the lymph node dissection that generally accompanies a trach. It actually has more to do with the stage you are at than the procedure. For Stage Ia cancers, since they are considered micro-invasive, the chance of something spreading to the lymph nodes is practically nil, so they generally do not do the LN dissection. With Stage Ib cancers, there is a still a small risk, but it is a greater possibility since the tumor is larger, so they do the LN dissection to be sure. Although I'm Stage Ib1, I am just barely into that category (my tumor was 5mm deep and 10mm wide -- cutoff for Ia2 is 5mm deep and 7mm wide, so I'm just barely into Ib1). So, hopefully my chances of LN involvement are also almost nil, and those little suckers are all clear!!

As for post-op restrictions, I've been told that I should be back to relatively normal light activities within two weeks, but that if I wanted to stay out, it is major surgery and they will write me out for at least six! For the first six weeks there's no lifting, bending, et cetera, but my doc said I should be okay to drive and go back to work if I feel up to it after two weeks. It all depends on how well you heal. I've been told that I'm young and in good shape (that's a first!!) so they expect me to do well. I'm exercising like crazy now to make up for having to be sedentary after surgery, since I want to make sure I take it easy then and let my body heal properly. I've heard that you only have one chance to heal right, and I want to give myself the best chance possible!!

I'm getting a little ahead of myself here, but to give a complete picture of what they tell me to expect after surgery. After six to eight weeks sex is okay (although seeing as they are literally sexing my vagina to my uterus, I can't imagine I'm going to trust that that quickly!!), also my doc says no deep penetration for about 2-3 months. I've also been told that within three to four months I should be perfectly fine and not have any side effects. I can even try getting pregnant after about four months! My doc at Yale says they recommend waiting a year to check for recurrence, but that trying right away is not out of the question. Physically speaking my body should be just fine. But, I'm not even worrying about any of that now.

I'm going for my pre-op physical and getting all my prep info on Tuesday afternoon, so I will keep you posted of anything new I learn! I do know that I have to specifically ask for the DNA test on the HPV so I can find out what strain I have.

Best to all!!

Pickle Eyes 02-15-2009 09:21 AM

Re: adenocarcinoma in situ -- cone biopsy
 
Thanks for all of that info, Zoe. The reason for them taking the LNs is the only logical one (the lesions has spread), but the way I kept reading it (other sites) was it was just part of the procedure. I'm glad your doctor is willing to meet you in the middle between your wishes and his for the LNs.

When it came to the trach, I didn't realize they took so much of the fatty tissue. Wow!

Your recovery time sounds like that of a woman who has a hyst. So plan on taking it very easy and resting more than you think you should. Doing too much, too fast, slows down the healing time. I hope you have some sort of hobby that you can do. My first 3 weeks or so were the worst because I couldn't sit for long periods of time so that eliminated computer (I have a desk top), doing crafts, etc. I spent a lot of time lying down (watching movies and reading).

((((hugs)))))

bonesygirl 02-15-2009 10:43 AM

Re: adenocarcinoma in situ -- cone biopsy
 
Thank you Zoe, for posting. I check these boards about everyday for updates and anything else people want to share. You sound like a very strong women. You will get through this surgery just fine, but like Pickle said take it easy after the surgery and plan for longer time than the docs tell you (just in case). To be honest, the healing process of my cone took a lot longer than expected. For whatever reason I bled non stop for a month. It wasn't until I went back a second time(after surg) for a follow up check that the doc got the bleeding to stop. (he put some powerish stuff up there that made the bleeding stop immediately) I had even called a few times letting them know that it wasn't healing correctly. I guess my doctor chalked it up to the thought that he assumed I was having a period. Needless to say, it wasn't a period, it was just still bleeding from surgery. Plus, I was rather sore for about a month or sore too. I dunno, hopefully It was just me and you will heal up great and in a timely manner. Please keep us updated with anything else. You are in my thoughts, Zoe.

JessicainCanada 02-15-2009 10:56 AM

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

Just wanted to add my 2 pennies for what it's worth regarding the possible post op cath situation. Most doctors will tell you that a post op cath may be in your future with intra lower abdominal surgery, but quite honestly VERY rarely do you end up leaving the hospital with one.

This past summer when I worked in post op recovery for my RN practicum with school I'd say about 3/4 of the patients that I worked with were catheterised for their procedure and left the hospital without having to bring a fun bundle home with them lol.....Not that its funny but thats what we call them;). I think the MD's say that as a just in case kinda thing, but again I'd never even heard of a trach before here so what do I know! :).....

That said, a catheter sounds like it would be hard to use but really isn't.

I too have to have one for my hyst and am hoping I can pee before I leave the hospital also:p. Kegel exercises will help to build up the muscles that you will need so that wouldn't hurt to do those also in the meantime...

~Jess


All times are GMT -7. The time now is 10:57 AM.