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Pickle Eyes 02-15-2009 11:05 AM

Re: adenocarcinoma in situ -- cone biopsy
 
I think (my memory isn't great) I might have been told I might need to go home with one, but that wasn't the case.

I *DO* remember feeling pain/discomfort and not knowing why. I'd go to the restroom and would feel better, intrestingly :smacks forehead: I felt pressure from the need to urinate, but there was general discomfort that I didn't realize the discomfort was the bladder. It didn't take me long to realize that I need to first attempt going to the bathroom if I felt uncomfortable - and that often took care of the discomfort problem.

Ya'll are such wonderful women. I really am glad we have all found this little spot on the world wide web! :)

zoe96 02-15-2009 07:18 PM

Re: adenocarcinoma in situ -- cone biopsy
 
Hi ladies, and thanks so much for the tips and support!!

zoe96 02-15-2009 07:28 PM

Re: adenocarcinoma in situ -- cone biopsy
 
Yikes, I went to put in a return and ended up posting my accident!

Thanks for all the tips on the cath....my cousin was a nursing student, and she told me much the same as Jess. She also said it's not that big a deal, and that I'll be fine. Since I have no choice, I'm sure I will be!!

Pickle -- yes, taking the parametrial fat and losing all that tissue is not thrilling me. All I can think of is what if heaven forbid there's a recurrence, where would it spread to if there's not a lot of surrounding tissue? Hopefully I'm worrying about that for nothing, because I don't want any recurrence in my future, that's for sure! I am going to talk to my doc about it though, and see if it's possible to have less taken....although I suspect I'll lose on that argument! But, you don't get if you don't ask, so I figure it's worth a shot :)

Boneysgirl, so sorry to hear you had so much trouble after the cone!! I was amazed that I really didn't bleed, at all....am I'm hoping that I have as relatively easy a recovery from this surgery as I did from the cone.

I plan to take it very easy, and keep in mind that just because there aren't scars on the outside doesn't mean my insides haven't been put through hell. And since I want them to heal nicely, I need to be nice to myself! I have a bunch of stuff on my DVR that I plan to watch, plus I have a library full of books that I haven't had time for...so I plan to catch up on my reading! I will also be mindful of the sitting, because now that Pickle mentions it, prolonged sitting has been a bit uncomfortable, and seeing as what they're going to do, it would make sense that that kind of pressure is not a good idea. So, laying down and relaxing is on my agenda post-op!!!

I really am grateful I've found such a supportive place with such great ladies to help keep me grounded!!!

luvbug412 02-20-2009 07:28 PM

Re: adenocarcinoma in situ -- cone biopsy
 
Catching up on the thread since I heard the "evil" AIS diagnosis with my LEEP results.
You ladies are amazing sharing your stories.


I return to the Dr on March 11th for LEEP follow-up. From what I understand (on multiple fronts) is that they really can't schedule any new surgeries until I'm successfully healed from the LEEP.

I'll also learn then what the next approach will be. At this point I'm going to ask for a gyn/onc referral (thanks ladies for pointing that out). I have another thread I've been posting to on the board collecting questions I plan on asking. I really just don't know what to expect or do at this point. This really snuck up on me since it didn't show any glandular involvement in biopsies or ECC and finally showed up in LEEP results.

zoe96 02-21-2009 08:02 AM

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

I know EXACTLY what you mean about feeling like this snuck up on you. If you can't tell by reading my thread, I'll flat out say it: I still feel like all this is surreal, and am waiting to wake up and find out this is all a bad dream. I am following the thread you started, and I believe I posted to it last night. Forgive me, and I don't mean to make light of what you are going through, but if you hear me out, it may (I hope) make you feel better.

If you *only* have AIS (and again, I'm not making light of your situation!), you are very lucky, and your condition is VERY manageable. You DO NOT have cancer yet, and that is such a good thing! Trachelectomy is definitely an option for you, and you wouldn't have the worries that I do with it -- there's is NO chance of lymph node involvement or spread to other organs....it is "in situ," in place, and hasn't done any damage elsewhere. The LEEP may very well be all you need, in combination with close monitoring. BUT, if you opt to be more aggressive (or if your docs suggest it), from my understanding of the trach (and I've consulted with three oncologists, the last being a woman, which made all the difference practicality-wise as far as what to expect afterwards), the surgery is no *that* bad (though no one wants to go through this in the first place), and afterwards physically you will be fine. Having the procedure laparoscopically also seems to make a HUGE difference in the whole thing (I've read posts on another board, and the ladies that had it abdominally had many more problems and longer healing). I am having surgery -- laparoscopically!! -- on Wednesday, and will keep you all posted as to how things go, both from a pathological findings perspective, but also a practical, physical perspective. I am so ready to just get this over with, but I am also so terrified that, despite the odds that everything will be just fine, they will find positive lymph nodes, LVSI, or an unclean margin....if someone could tell me right now that they will definitely NOT find any more cancer in me, and this is just preventative and to make sure nothing recurs, I would be perfectly calm. So my point in this long-winded explanation here is this: with a diagnosis of AIS, the worst you are facing is a trach, without the worries that I have now. It could be waayyyy worse....as could my situation, and that's what I keep trying to remember. It's hard to think that way right now, I know, but it is true.

FYI, the reason you can't schedule any new surgeries until you heal from the LEEP is due to the swelling and healing process, which can complicate a further procedure. I felt the same way; I had my cone, and when I was told more surgery was necessary, I was like why the heck are you letting it heal just to take it out??? I also had to wait two weeks to have my CT, MRI and PET scans, and at that point I was so desperate for information that waiting those two weeks was horrible, too. But now I understand that it's for the same reason....post-op swelling can lead to mistaken or unclear findings on the scans (one of mine states something about enlargement of the parametrial fat, but my doc said that's just a result of the surgery, and not a "real" finding). I have to wait six weeks post-op for my trach. So, you need to let your body calm down from the trauma of the LEEP/cone, so that they don't end up taking too much or too little material because of the swelling.

Making a list is always a good idea! I go with a list each time....

I hope I didn't offend anyone or sound like I was making light of an AIS diagnosis. That is devastating and terrifying, and I totally understand. My only point was it could be way worse, and your options and prognosis are great....sitting where I am, I would take your diagnosis in a minute.

((hugs)) to everyone, and we will all get through this!!!

luvbug412 02-21-2009 09:02 AM

Re: adenocarcinoma in situ -- cone biopsy
 
[QUOTE=zoe96;3893356]

I hope I didn't offend anyone or sound like I was making light of an AIS diagnosis. That is devastating and terrifying, and I totally understand. My only point was it could be way worse, and your options and prognosis are great....sitting where I am, I would take your diagnosis in a minute.

((hugs)) to everyone, and we will all get through this!!![/QUOTE]

No offense zoe!!! And honestly what you closed with is the perspective I have been lucky enough to get from a friend of mine (she a 1yr survivor of breast cancer that had lymph node involvement).

She basically kicked me in the butt saying "Lady - what do you have to worry about - it was caught - its not cancer and dangit if it was it was caught EARLY!"

And who am I to argue!! She continued to work through surgery, chemo, radiation, and more surgery. I respect her very deeply, and would prefer if I did NOT give her a reason to drive to my house and kick my a**.

I'm finding out that in some bizarre way I'm a lucky b*****. Here I am crying, frustrated, and panicking about an "in situ" diagnosis. One of the ONLY locations that in situ is commonly found before it advances to anything worse.

Ayup - I'm a weenie and a wuss. I'll admit it! What the heck do I have to worry about? :)

Zoe - you'll be fine girl!! Good luck on Wed. We'll be praying for ya!

LilyL21 02-21-2009 11:26 AM

Re: adenocarcinoma in situ -- cone biopsy
 
[QUOTE=luvbug412;3893406]She basically kicked me in the butt saying "Lady - what do you have to worry about - it was caught - its not cancer and dangit if it was it was caught EARLY!"
[/QUOTE]

That is so true! And even though it SUCKS if you have to have a hyst and can't have kids, it's not like it's brain cancer! At least it's an organ that you can go on without!

Also, I was watching the news the other day and thinking, "At least me face didn't get ripped off my a chimp!"

Truely, there are much worse things than this!

zoe96 02-21-2009 01:15 PM

Re: adenocarcinoma in situ -- cone biopsy
 
Thanks for the good wishes!! And no one thinks you are a wuss....

Lily, you are so right about the chimp attack...I live in CT so that has been BIG news around here. It really does put into perspective degrees of severity....

As I said before, we will all be just fine!!!

luvbug412 02-22-2009 07:38 PM

Re: adenocarcinoma in situ -- cone biopsy
 
[QUOTE=LilyL21;3893545]That is so true! And even though it SUCKS if you have to have a hyst and can't have kids, it's not like it's brain cancer! At least it's an organ that you can go on without!

Also, I was watching the news the other day and thinking, "At least me face didn't get ripped off my a chimp!"

Truely, there are much worse things than this![/QUOTE]

I guess that is the problem - I'm relatively attached to my uterus.. it is relatively attached to me.

LilyL21 02-23-2009 06:24 AM

Re: adenocarcinoma in situ -- cone biopsy
 
Oh, I didn't mean to imply that I'm not attached to my uterus! I cried and cried before I even had to do the LEEP. I don't like having stuff cut out of me! It totally sucks.

I found the cone actually easier, psycologically speaking. Before the LEEP, all I knew about was the CIN 2, I just kept thinking, "I'm having my cervix partially amputated to avoid cancer that has a 5% chance of occuring eventually." I almost didn't go through with it! My doctor let me know that the wait-and-see approach was an option. The only reason I went through with it is because I was scared that waiting would mean the lesion would get larger and they would have to cut off more.

Then came the AIS diagnosis and my doctor telling me, "You MUST have a cone biopsy." I thought, if you don't do this, you definitely will lose your uterus and possibly your life! It made it easier to think of it as cutting out a little to save the rest.

Having a a cone biopsy hysterectomy completely SUCKS. It's awful. It's totally something to be sad about and something to grieve over. But it's something, at least for me, I feel I could live without and be a pretty happy person (eventually). I'm not going to die. I'm not going to think about it every second of the day for the rest of my life. It's totally terrible, but it's probably the least bad of the all the terrible stuff that could happen to me.

luvbug412 02-23-2009 08:10 AM

Re: adenocarcinoma in situ -- cone biopsy
 
((hug)) ... I have to agree with it being a hard choice. My concern is I know when I go back in March - the CKC will probably be dropped on the table as far as treatment. My Dr. told me already it may be necessary depending on the results of the LEEP.

Would I go thru with a hyst? I don't know. I know when I spoke with my Dr. about permanent birth control (no desire to have kids) he said I was to young and could possible change my mind. I am flip flopping back and forth between taking the "wait and see" approach, the CKC (which I have a feeling will be his next recommendation) and a hyst (which hasn't come up on the table yet but I am sure will be talked about in March).

LilyL21 02-23-2009 08:42 AM

Re: adenocarcinoma in situ -- cone biopsy
 
I'm sure hysterectomy will be discussed, but didn't you already have clear margins from the LEEP? That makes me think the chances of it being recommended are slim! I think you are right, your option will most likely be CKC or wait and see. I guess this is really why you need to see the expert: the gyn/onc. No matter his recommendation, I think you should get a second opinion. I'm going to 2 gyn/oncs myself even though my margins were clear from the CKC. Good luck!

My sister, who had a abnormal pap and is waiting for biopsy results, told me she would have a hysterectomy except that she didn't want to miss time from work. She doesn't want kids either, and is completely like, "Get this stupid thing out of me!"

But I'm so on the same page as you. Even without the kid factor, I'm attached to my uterus/cervix!

luvbug412 02-23-2009 09:16 AM

Re: adenocarcinoma in situ -- cone biopsy
 
Ya - clear margins on the LEEP. Starting to do research for a gyn/onc. None associated with the hospital that my gyn is associated with. Nervous about it I guess. First off I'm not good with Drs and its taken me quite a few years to get the network of medical professionals I use in place. How do I approach it? Do I just call them and say "Hey - this is where I am and I want to know more?" .... do I wait till my appt in March to get all the details from my current gyn and then go...

Ugh - so confused about stuff that should be so cut and dry its ridiculous.

LilyL21 02-23-2009 09:36 AM

Re: adenocarcinoma in situ -- cone biopsy
 
[QUOTE=luvbug412;3895597]Do I just call them and say "Hey - this is where I am and I want to know more?" .... do I wait till my appt in March to get all the details from my current gyn and then go...[/QUOTE]

Yep, just call them up. Though my gyno gave me names of 2 gyn/oncs, she didn't really "refer" me in that she didn't send over my info. I just called their offices and said I wanted an appointment. They asked me what for, and I told them that I had a diagnosis of AIS and wasn't sure whether I needed further treatment. One gave me an appointment of 4 weeks later and one gave me one in about 8 weeks. The receptionist at the 8 week one indicated that if my doctor's office called she could get me in sooner, but I took that appointment since all I really need is to just talk to him.

Because it can take a bit to get an appointment, I'd call now and try to schedule an appointment for after your follow up with you gyno.

I'd try to make the appointment as closer to after your gyn appointment as possible. That way whatever your gyn recommends, you can see the gyn/onc to ask if that's really the best option before making your decision.

Elizabeth1975 02-23-2009 03:19 PM

Re: adenocarcinoma in situ -- cone biopsy
 
Luvbug,

It will be really interesting to hear what your doctors say and vice versa, I'll let you know what I'm told after I visit the gyn/onc. I too had clear margins on my LEEP for the glandular stuff (and the squamous stuff) so I don't know what to expect.

In my case, my gyn wouldn't refer me (they said they didn't do referrals -- ????) so I just went to my family doctor and they wrote me a referral and said what I was doing in seeing a gyn/onc made perfect sense!!!

I haven't heard about my appt yet -- I plan to call tomorrow.


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