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Old 09-24-2008, 05:21 PM   #1
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CIN II - Age 41 - wondering about "wait and see" vs. LEEP

Hi everyone,

I haven't posted to a board like this before, so here goes...

This year I've been diagnosed with cervical dysplasia, CIN II - so not cancer, but pre-cancerous. I was referred to an ob/gyn for a LEEP consultation. If you read the brochures, this procedure sounds like a walk in the park - I wondered why I even needed a consultation. After talking with the doc, though, it all sounds pretty hideous - basically they want to remove half my cervix with an electrocautery device, followed by an unknown amount of pain and 4-6 weeks of technicolor oozing while the burns heal.

I've been given the options of "in the office" vs. "with sedation". To be honest, neither option sounds good to me. I'm really afraid of repeating a medically abusive situation I had to endure when I was younger: When I was 13 I was forced to go through a medically questionable bladder-related procedure that involved muscle relaxants and sedation, and the doctor made sure he thoroughly humiliated me about the fact that I had my period at the time, including pulling back the covers to have a gratuitous peek at my naked, drugged body.

Ever since then I have dragged myself in for annual exams (with female docs, thank you), but never felt good about it. And now this: I have the option of being awake while having half my cervix zapped out, or put back into the same situation I was at all those years ago, drugged and helpless. The ob/gyn kept saying she understood, but I kind of doubt that she does. I think most docs have never been in a medical situation where they are paralyzed by drugs, alone, and afraid.

So, the doc did mention one other option, that still doesn't seem great, but quite frankly is starting to sound appealing to me. She said it is possible to take a "wait and see" approach, as 40% of these cases resolve themselves over time. You have to go for cervical cancer screenings and colposcopies during that time, but you have the chance to avoid having half your cervix removed by electrocautery.

I realize that my age (41) is against me, although I am otherwise healthy and not a smoker. I'm wondering if anyone out there has ever tried this option, especially in their 30's or 40's, and what your experience and results were like.

Go easy on me, this really is my worst nightmare.

Thank you for your time and attention!

 
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Old 09-24-2008, 06:07 PM   #2
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Re: CIN II - Age 41 - wondering about "wait and see" vs. LEEP

Hello there--ask if she can laser you instead. Laser is perfectly acceptable tx for CIN 2 and in fact, is PREFERRED over leep for large lesions (lesions covering a large surface area which, if you were not exaggerating about half your cervix, certainly qualifies). Problems: 1) laser is more expensive so insurance may not pay as much (or at all?--I don't know about you but if insurance doesn't pay that means I am not getting it done), 2) most gyns are not trained in laser, 3) the equipment is very expensive so even if they are trained, they probably don't have it, and 4) there is no pathology to send to the lab to call margins and depth of penetration.

Laser will be my choice of tx and I will travel 6 hours out of town for a qualified practitioner IF my insurance covers it.

 
Old 09-24-2008, 06:45 PM   #3
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Re: CIN II - Age 41 - wondering about "wait and see" vs. LEEP

(((Hugs Bean))) I'm sorry you are having to deal with this, but I am glad you have found us!

I have never experienced anything like what you've described, but I was EXTREMELY anxious when I learned I was high risk HPV positive, had to have a colpo and ECC, a cone biopsy, and a hysterectomy.

With CIN II, you might consider getting an appointment with a gyn/oncologist. He/she is highly trained in atypical cells and probably has more expertise in various treatment options for various dysplasia.

I didn't have a LEEP, but I had a cold knife cone. It was done under general anesthesia in an out-patient facility. I was home by noon. I took pain killers for about 24 hours, then I was just a bit tender, like with mild cramps. My vaginal discharge lasted about a week or 10 days, it was like the light discharge I got on the last days of my period, but it lasted longer. It didn't require a pad, just a panty liner.

After having read about the in-office LEEP, I would NEVER chose that option. I was going to detail the things I find appaling about that, but decided they were a bit gross to put into my first post to you. I wouldn't chose it. But then, I haven't been in the situation you've been in.

I'm wondering if there is a way you could have a familiy member or friend watch what goes on during either procedure? You can always ask.

I was told that women over 30 have a more difficult time (and are less likely) fighting HPV, therefore it is more likely (in women over 30) for it to develop into dysplasia (and worse case scenario - cancer).

If you chose to wait and see, then I highly suggest you ask your doctor to do an ECC (endocervical curettage) to check the cervical canal for dysplasia. If you decide to wait and see, then it is imperative that you be vigilant about follow up appointments.

If cervical cancer is caught early, there is a 95-99% survival rate. (The numbers on the lower end if a woman has never had gynecological care and paps). I've always had my paps, every year since I was 19 (I'm now 45) and they have always been good. I was diagnosed with cervical cancer back in April (adenocarcinoma Ia1). The only treatment I need/ed was the hysterectomy. I won't need chemo or radiation BECAUSE the cancer was caught so early.

I don't want to give you a bunch of stuff to worry about. I really want to just share my knowledge and give you some hope that if caught early it is best.

Please ask whatever questions you have. We'll do our best to help.

 
Old 09-24-2008, 09:53 PM   #4
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Re: CIN II - Age 41 - wondering about "wait and see" vs. LEEP

Hello brieaukirsch,

Thank you for your reply!

Laser wasn't mentioned as an option for me, but I will definitely ask (I'm going to go for a second opinion in about a week). I'm in the metro Twin Cities area, so if it's going to be an option anywhere in MN, it should be available somewhere around here.

I don't know if what I have is considered a large lesion - what I know is that the ob/gyn said that she'd take out a piece the size of the end of my thumb - I measured that, and it's 2 cm, and the average cervix is 4 cm deep, so that's where I'm getting my "half" measurement. She said that since I'm not planning to have kids she could take out more (a deeper cut, I think), and make sure she got it all. I know that is a good thing from a cancer prevention perspective, but wasn't terribly comforting to me, since I've been attached to that cervix for a few decades now. Yikes!


Quote:
Originally Posted by brieaukirsch View Post
Hello there--ask if she can laser you instead. Laser is perfectly acceptable tx for CIN 2 and in fact, is PREFERRED over leep for large lesions (lesions covering a large surface area which, if you were not exaggerating about half your cervix, certainly qualifies). Problems: 1) laser is more expensive so insurance may not pay as much (or at all?--I don't know about you but if insurance doesn't pay that means I am not getting it done), 2) most gyns are not trained in laser, 3) the equipment is very expensive so even if they are trained, they probably don't have it, and 4) there is no pathology to send to the lab to call margins and depth of penetration.

Laser will be my choice of tx and I will travel 6 hours out of town for a qualified practitioner IF my insurance covers it.

 
Old 09-24-2008, 10:28 PM   #5
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Re: CIN II - Age 41 - wondering about "wait and see" vs. LEEP

Hello Pickle Eyes,

Thank you so much for your reply. What you went through sounds *so* much worse, I know I would have been scared to death....

I have considered a gyn/oncologist - but haven't tried to find one yet. The next step in my current plan is to go for a second opinion with a different ob/gyn (next week). I'm hoping to find one that I'm more comfortable with - maybe that will make all the difference.

Based on what little I've read about the in-office LEEP, I find it appalling, too. Electrical arc-ing, local anaesthetics that sometimes don't work, egad... The weird thing is that many of the brochures only mention the in-office, awake option, they don't seem to talk much about sedation...

I think the "technicolor" nature of the LEEP aftermath is because you're healing from internal burns from the electrocautery (at least that was what I gathered). I know that LEEP is considered to be a less serious (?) procedure than the cold knife cone, but the aftermath from your procedure sounds less nasty than what was described to me...

I have been encouraged to bring a friend along (it's required if you go for sedation). I even know one who I think would be really good with this, but I'm finding it very hard to pick up the phone and ask. Very few of my friends know the backstory, it's always been too hard to share...

I have had an ECC - it was done as part of my initial colposcopy (done by my primary care doc). She told me that it was clean, so that is good news. But that's part of the mystery, too - if there isn't anything up there, then why take so much with the LEEP?

I think the main thing I'd like to ask you is, what did you do to find support and reassurance back in April when you were going through all this? Did you find it through family? friends? your doc? the online boards? How did you reassure yourself that it was going to be OK, that they were going to treat you well and do the right thing? I realize that something needs to be done, but I'm finding it very hard to be comfortable with the idea of LEEP, or with the ob/gyn I saw last week.

The frustrating part for me is lack of firsthand information about this procedure and its aftereffects. If I'm going to have my house reroofed I ask the contractor for references, and they'll tell me what their experience was. Due to privacy concerns (understandable), you can't do that with docs and medical procedures. So, with only info from the doc to go by, it feels like I'm making this decision in a vacuum. And of course that leaves plenty of room for my imagination to take over and create horror stories....

Again, thank you for your support, it is greatly appreciated!


Quote:
Originally Posted by Pickle Eyes View Post
(((Hugs Bean))) I'm sorry you are having to deal with this, but I am glad you have found us!

I have never experienced anything like what you've described, but I was EXTREMELY anxious when I learned I was high risk HPV positive, had to have a colpo and ECC, a cone biopsy, and a hysterectomy.

With CIN II, you might consider getting an appointment with a gyn/oncologist. He/she is highly trained in atypical cells and probably has more expertise in various treatment options for various dysplasia.

I didn't have a LEEP, but I had a cold knife cone. It was done under general anesthesia in an out-patient facility. I was home by noon. I took pain killers for about 24 hours, then I was just a bit tender, like with mild cramps. My vaginal discharge lasted about a week or 10 days, it was like the light discharge I got on the last days of my period, but it lasted longer. It didn't require a pad, just a panty liner.

After having read about the in-office LEEP, I would NEVER chose that option. I was going to detail the things I find appaling about that, but decided they were a bit gross to put into my first post to you. I wouldn't chose it. But then, I haven't been in the situation you've been in.

I'm wondering if there is a way you could have a familiy member or friend watch what goes on during either procedure? You can always ask.

I was told that women over 30 have a more difficult time (and are less likely) fighting HPV, therefore it is more likely (in women over 30) for it to develop into dysplasia (and worse case scenario - cancer).

If you chose to wait and see, then I highly suggest you ask your doctor to do an ECC (endocervical curettage) to check the cervical canal for dysplasia. If you decide to wait and see, then it is imperative that you be vigilant about follow up appointments.

If cervical cancer is caught early, there is a 95-99% survival rate. (The numbers on the lower end if a woman has never had gynecological care and paps). I've always had my paps, every year since I was 19 (I'm now 45) and they have always been good. I was diagnosed with cervical cancer back in April (adenocarcinoma Ia1). The only treatment I need/ed was the hysterectomy. I won't need chemo or radiation BECAUSE the cancer was caught so early.

I don't want to give you a bunch of stuff to worry about. I really want to just share my knowledge and give you some hope that if caught early it is best.

Please ask whatever questions you have. We'll do our best to help.

 
Old 09-25-2008, 07:00 PM   #6
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Re: CIN II - Age 41 - wondering about "wait and see" vs. LEEP

What did I do for support? Check my join date! Seriously! I had my cone on April 3rd, I got my cancer diagnosis on April 11th. I joined on April 6th. This discussion board has REALLY helped me. There is another one I go to (but can't post the name of it ).

My family has been supportive and so have my friends (once I finally told them about 4 weeks after my diagnosis), but no one wanted to talk about all possible "what ifs" and every nitty gritty detail. That's why this site has been a godsend!

It also really helped for me to tell my story. It helped me to reach out to those who were struggling with simliar situations.

Starting in September of last year (until early August of this year) has been EXTREMELY stressful. Not just the HPV diagnosis, the following surgical and medical procedures, but I had another serious medical incident happen (which has resolved, but resulted in no fewer than 14 doctor's visits, an ER visit, and a brain MRI!), and I had some serious marriage issues. All of those have resolved, but there were so many days when I literally took it minute by minute.

You asked how I reassured myself. All I can say is I had faith in God. I do not consider myself a religious person, but I have a solid steady conversation with God. Throughout the Spring, I kept having the following scripture run through my head "All things work together for good, for those who love and follow Him." My Dad use to say a version of the scripture all the time when I grew up. I kept thinking how it is amazing that 2 different doctors did one more thing than they usually do. If they hadn't, my cancer would still be growing and wouldn't be found until it was more invasive and required chemo and/or radiation. I'm blessed my GP started testing for HPV in women over 30. She started the testing only a few months before my last pap. Then, the gyno did the ECC when she didn't see anything to biopsy on the exocervix. I think if she'd found something she wouldn't have done the ECC. As it turns out, my cancer (adenocarcinoma) is sneakier than carcinoma. It is more difficult to find, it grows differently, is usually found at later stages than carcinoma. I'm blessed both doctors did what they did. The trail to diagnosis made my spring a living Hades, but I know I am blessed and stronger because of it.

I'm not saying those things to preach. I'm simply saying that is what got me through. I feel like I had an angel sitting on my shoulder throughout it.

Also, I watched a movie back in April. It was one of those Hallmark Special movies. This woman's husband died. She was living on the American Frontier. Winter was coming and she couldn't return home. She ended up marrying a man, just so she could stay and live out the winter. Then she could go back home (back east) in the Spring. It ended up that she was pregnant from her late husband. At one point, she was sitting in her room weeping. The man's daughter (his wife had died a year or so before) asked him "Is she ok?" The man replied, "She isn't right now, but she will be." THAT thought kept going through my mind, too. I'm not ok right now, but I WILL be.

I had confidence in my doctors because they found this stuff so early. I felt their hands and eyes were guided by divine power. I also felt comfortable talking with my doctors.

I always took in a list of questions to ask. I left plenty of room for answers. The doctors generally took time to answer all of my questions. That helped me understand what was going on. I felt that when I had more information, I was in more control. My gyn/onc gave me options on my treatment. That helped me feel in control, too.

Please, ask any questions you want. I'll do my best to answer. At a minimum, I can be an ear to listen and a cheering squad for you! Take care of yourself!

 
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Old 10-07-2008, 12:43 PM   #7
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Re: CIN II - Age 41 - wondering about "wait and see" vs. LEEP

Hi. I was diagnosed with the same and worse at the same time. CIN II and CIN III. I have had numerous colposcopies from the "wait and see" method... eventually (okay, after about 6-8 months), the doctors and you will get tired and want another option.

I chose to have the LEEP procedure done. Matter of fact, I just had it done two weeks ago. I still have a little discharge, but it's not bad... no technicolor. You'll have strange colors from the colposcopies too, because of the silver nitrate they put on you, but it'll only be black or silver. Nothing too weird.

As far as I'm concerned, because I've been battling for over a year, I'm tired. I want them to combat the disease and take care of it before it takes care of me.

 
Old 10-07-2008, 07:14 PM   #8
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Re: CIN II - Age 41 - wondering about "wait and see" vs. LEEP

Bean, how are you doing? I'm glad Nessa bumped this thread (Hi nessa, welcome!). I'd been wondering how you were doing.

 
Old 10-09-2008, 10:48 PM   #9
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Re: CIN II - Age 41 - wondering about "wait and see" vs. LEEP

Hi Pickle - thank you so much for checking up on me!

I'm doing OK. After the visit to the first doc I had a long phone conversation with one of the triage nurses at the ob/gyn, who recommended I go for a second opinion. I chose a doc who is fairly new, just out of residency, but the nurse recommended her because she was a gentle sort.

And, it definitely helped to have the second opinion. The first doc had blown things up into such a big production - day surgery, the LEEP, plus she likes to go in and do a second biopsy which would involve a second LEEP further up in the cervical canal. More burns. Great.

Doc #2 answered all my questions honestly, and when I asked about the 2nd biopsy she said that since I have just the squamous cells, not the glandular (the ECC came back clean on the colposcopy), she would not recommend the 2nd biopsy in my case. She does all her LEEP procedures in office, she said most people do very well with these, and she thought I would do well, considering that my colposcopy went well. So we're back to something that feels more sane, just endure the temporary nastiness to get rid of the bad stuff. It helps to be free of the extra worries of sedation and possible flashbacks to my experience as a teen.

I realize the first doc has a LOT more experience, but when I talked to her it seemed like the sedation route was the one she vastly preferred. I had real concerns that I wouldn't be treated very well if I chose the office procedure, because it would go against her wishes.

I've also enlisted a trusted friend to come with me - she's been through her share of female-type procedures, so I think will be a great resource.

My big frustration now is trying to schedule the darn thing! They have to bring in rental equipment and a tech to do the in-office procedure, plus they're moving my doc to one of their other clinics, so nobody seems to have any idea when it can be scheduled, except that it can't happen in October (their only dates in October were dates when my friend is on vacation). So, looks like November? I talked to them last on Tuesday, I will call them back tomorrow if they don't call me. Augh!!

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Originally Posted by Pickle Eyes View Post
Bean, how are you doing? I'm glad Nessa bumped this thread (Hi nessa, welcome!). I'd been wondering how you were doing.

 
Old 10-09-2008, 10:57 PM   #10
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Re: CIN II - Age 41 - wondering about "wait and see" vs. LEEP

Hi Nessa,

Thank you for your reply - I've been doing a lot of research and consideration, and I was coming to the same conclusion - one LEEP is probably going to be less of a problem overall than repeated colposcopies.

I'm curious to know about your LEEP - if you had it in office or as a day surgery with sedation. Because of the fears and bad memories I mentioned in my first post I'm strongly leaning toward the in office procedure, to avoid the sedation and all the fuss and loss of control that goes with it. But at the same time I'm trying to gather as much info as I can about what people experienced during the procedure, however they had it done, so I can be better prepared.

Any info you can provide will be appreciated - thanks!!


Quote:
Originally Posted by nessa84 View Post
Hi. I was diagnosed with the same and worse at the same time. CIN II and CIN III. I have had numerous colposcopies from the "wait and see" method... eventually (okay, after about 6-8 months), the doctors and you will get tired and want another option.

I chose to have the LEEP procedure done. Matter of fact, I just had it done two weeks ago. I still have a little discharge, but it's not bad... no technicolor. You'll have strange colors from the colposcopies too, because of the silver nitrate they put on you, but it'll only be black or silver. Nothing too weird.

As far as I'm concerned, because I've been battling for over a year, I'm tired. I want them to combat the disease and take care of it before it takes care of me.

 
Old 10-13-2008, 06:41 PM   #11
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Re: CIN II - Age 41 - wondering about "wait and see" vs. LEEP

Hey... I had the day procedure done and was under anestesia. I trusted my doctor... I've had this doctor since I was fifteen. I really can't say that there was much pain or anything, since they were kind enough to start me on pain killers right away. At most I had some cramping... nothing too major.

My best advice to you is to choose what you are comfortable with. You know your body the best... do what you think is right.



Quote:
Originally Posted by Bean2008 View Post
Hi Nessa,

Thank you for your reply - I've been doing a lot of research and consideration, and I was coming to the same conclusion - one LEEP is probably going to be less of a problem overall than repeated colposcopies.

I'm curious to know about your LEEP - if you had it in office or as a day surgery with sedation. Because of the fears and bad memories I mentioned in my first post I'm strongly leaning toward the in office procedure, to avoid the sedation and all the fuss and loss of control that goes with it. But at the same time I'm trying to gather as much info as I can about what people experienced during the procedure, however they had it done, so I can be better prepared.

Any info you can provide will be appreciated - thanks!!

 
Old 10-14-2008, 01:30 AM   #12
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Re: CIN II - Age 41 - wondering about "wait and see" vs. LEEP

Hello Pickle. I wanted to comment on your post about adenocarcinoma being different from carcinoma. Actually carcinoma is defined as a malignant tumor. It is the prefix, in this case "adeno" that indicates the type of tissue from which it arises. Adeno arises from tissue involving internal organs that have secretory properties such as the lining of the intestine. Squamous cell involves the skin, as does basal cell.

It is because this disease can go from nonsymptomatic to full blown invasive cancer in such a relatively short period of time especially if one is under extreme stress depressing the immune system that I would never suggest that anyone "wait and see" and I think it is irresponsible of any physician who recommends this route.

Glad yours was caught early and you required no additional treatment. You don't seem like one to let your guard down from the posts I've read. I think when doctors tell their patients they can "wait and see" this gives a false sense of security to the patient as thought it is not that urgent. Where do some of you people live that your insurance doesn't cover laser surgery?

 
Old 10-14-2008, 07:59 PM   #13
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Re: CIN II - Age 41 - wondering about "wait and see" vs. LEEP

Hi Dragonfly, thank you for writing all of that about adenocarcinoma and carcinoma. What I was referring to was that the atypical cells grow differently. Carcinoma grows to neighboring cells, grows fairly slowly, and is easy to access (squamous cells are on the exocervix and are swabbed during a pap and seen during a colpo). Adenocarcinoma (cancer of the glandular cells) grow more rapidly than atypical squamous cells, they do not necessarily grow to neighboring cells - they can skip over healthy skin and another lesion can be elsewhere (I think of it as a ping-pong ball bouncing around in there) and they are less likely to be detected during a pap smear or a colpo unless the doctor does an ECC (endocervical curettage) at the time of the colpo. So I ALWAYS suggest a woman ask for the ECC when she gets a colpo. That's what I was thinking, but I didn't type all of that out. But you are right, they are both cancers and need to be treated as such.

I feel the same way about the wait and see process as you do.

I'm glad you have joined the boards and are jumping into the discussions!

 
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