Frustrated with my doctor

I just got back from a doctor appointment with my oncologist/gynocologist. He just frustrates me! I was diagnosed with CIN1 about a year ago by my regular gynocologist and decided to go back to the oncologist/gyno that I had seen about 12 years ago to treat my CIN2. Back then I had cyro and a LEEP and laser to remove the bad cells. They finally did go away and i had normal pap smear for about 12 years until last February 2005. So my oncologist/gynocologist decides that with my history of past CIN2 and now having it back, that i should have a hysterectomy to remove the problem once and for all. I am 41 and don't plan on having any more children. At first I was all for going through with the hysto. Why not, i don't need the uterus anymore and it is just causing me problems. He made it sound like the surgery, which he was going to do vaginally, is no big deal. That once the surgery is done, that there are very few if any side effects to your body as long as you leave your ovaries. But i started to do more research and found this site. It started to scare me because it sounds to me like a lot of women DO have problems after a hysterectome. Ranging from incision infections, sexual dysfunction, atrophy of the vagina, hormone problems (even if you do leave your ovaries, sometimes they still fail). So today i told him i decided to take the watch and wait route since it is only CIN1. He seemed annoyed that i was taking this route, he just kept saying things like "I can't tell you what this is going to do, it could go away, it could progress, or it could just sit there." I said to him that since it is only CIN1 and low-risk HPV, isn't the chance of it becoming cancer very low. I told him that all the research i have done on HPV and cervical dysplasia seems to say that only the high-risk strains go on to progress to cancer. That women with low-risk should just watch and wait. He said that isn't true, he has seem many cancers with the low-risk. He doesn't even take the type of strain into consideration when recommending treatment. If you have dysplasia and it is progressing, you need to get it out. But mine isn't progressing yet? He did a pap smear, colposcopy, and endocervical scraping and I insisted on another HPV test (even though he didn't want to do it). He said we will wait and see what the results show and then go forward from there. He said visually my lesion has not grown in size but is still there, it is not extending into the canal at all. Am I crazy for not going through with the hysterectomy? I don't know, maybe i should switch doctors. I thought he was a great doctor, he is very well known for his surgical skills but not very good with patients i guess. I don't think i can say his name on this site because it could be slander? I wish i could find out if anyone else has seen him and what their opinion of him is. I thought i trusted him. He treated me before. But he is just so cold and matter-of-fact about this whole thing. Like making the decision to remove your uterus is not big deal. I hope i am not making a wrong decision and will regret it if i am sitting in his office a year from now with full-blown cervical cancer. Anyone else ever been told that low-risk HPV is still a cancer risk by their doctor? I AM JUST SO SICK OF THIS WHOLE THING AND JUST WANT IT GONE! It is consuming my life lately.
Jane

Hi Jane

I don't have any experience with abnormal paps, but I wanted to send you a as you search for the right answer (& possible right physician.) You are correct, we can't mention doctor names here, but I know what it's like to want more info on the physician you are trusting with such major decisions.

Maybe a second or third opinion would really be helpful to you. Hopefully there are other doctors who will be more compassionate and willing to discuss the safety of other options with you.

Hopefully sisters with some first-hand experience will be by to offer some suggestions for you.

It's good you are doing your homework and asking questions. Hang in there.

Best wishes & s,
Beth

Hi GladysBrown,

I agree with Sistabeth. Get another opinion. It sounds like from your post that you may have lost some ~trust~ in your Dr. Drs can give us options and choices. They do not make the decisions for us.

A hyst - even a less invasive one - is ~major~ surgery. So, in my opinion, not something to be taken lightly, even by a Dr.

Sounds like you are doing lots of research and that will ultimately help you with what to do next.

Best wishes,

Mary

This is a textbook case of when a second opinion is warranted, in my opinion.

You are having a difference of opinion with your doctor
and until this is resolved, my opinion (I am not a doctor) is that you continue to gather information and make the most informed decision you can.

You have done an excellent job of researching the issues and asking informed questions. I do better with a doctor who embraces that kind of research effort and the way you have presented the facts here, it seems there is not an emergency situation here.

My doctor says that I am the boss and you know what, he's right. I hope you find a doctor that gives you choices with plenty of information and then SUPPORTS you in your decision. Its an awesome blessing to have that kind of doctor!

Agreed...you are in desperate need of a second opinion.

Go for it!
Hugs and best wishes,
Beachball

(((Jane)))

I can understand your frustration. These abnormal PAP's can make a woman crazy!

I don't think you're crazy at all for wanting to consider the watch and wait approach. The current medical trend appears to be watch and wait with LGSIL. Most women will clear their system of an HPV infection within 2 years. The statistics I have read on HPV strains would support your comments that low risk strains do not generally progress to cancer--some say they never progress to cancer.

A second opinion would be a fabulous idea. And while you're waiting around, consider making the most of your healthy living choices. Eat well. Take a multivitamin with folic acid and the carotenoids, exercise moderately, get plenty of sleep, pray/meditate/do yoga. All of these are believed to contribute to a healthier immune system that might help your body fight off this virus! I also added a fabulous immune soup (with a variety of immune-boosting mushrooms) to my regimen about a year ago, and I think it was very beneficial for me.

Good luck! Don't feel rushed into anything--you definitely want to feel comfortable with whatever course of action you choose!

I have scheduled to have a LEEP done in 2 weeks since my latest report has shown i have regressed from CIN1 down to ASCUS. I still decided to have the LEEP since there is a visible lesion on my cervix under the coloscopy. The biopsy results came back negative this time but i worry that they are false negative results since the doctor can still see the lesion in the same place. I am so glad i don't have to have the hysterectomy at this point. The LEEP should be sufficient in removing the bad cells. I am a little bit nervous because they do still put me under general anesthesia for the procedure. I was hoping to be able to get out of anesthesia. But i guess it will be a short procedure. I am going to ask about a cervical numbing agent and then an IV for something to just make me relaxed and groggy but not completely out. Has anyone had a LEEP done not being under completely?
Jane

I had my leep with general. I didn't want to go under either. But at least for me they didn't put me under as deeply as with my hyst. I didn't require a breathing tube and when I woke up I didn't feel as groggy or out of it as I did even when I had my wisdome teeth pulled. I had asked to have a local and sedation but my doctor said it would not be pleasant for me. She said there is a burning smell and I would feel a lot of pressure. It is a very short procedure and when I woke up I felt slightly sore in my inner thighs and a slight burning feeling in my bladder. By the next day that was all gone and I felt normal. It wasn't a bad procedure at all. I had CIN2 and CIN3. I went in for my paps after that religiously. As of the last one it hadn't come back. I don't know if I have HPV but my DH's ex wife does and for some reason the doctors didn't test me. I'm assuming I do. I ended up with a hyst. anyway but because of a grapefruit sized fibroid. But I was happy to get rid of my cervix in case it ever decided to act up again. And I don't miss it. Don't worry too much about your leep mine was no biggie at all nor was being put under with it. Good luck.

Jane, you commented that during your research you found a lot of negative posts. "It started to scare me because it sounds to me like a lot of women DO have problems after a hysterectome." Keep in mind that women come to this site for advice and support. You don't read a lot of threads that begin because someone is doing well, but if you read all of the replies, you will see that there are a lot of women who respond that they had no problems. Threads usually start because someone had a problem and needed some advice.

As for me, I am having a pretty good recovery. It felt like it was taking forever for a while, but in looking back, I did great!

There are others like me. Check out this thread: https://www.hystersisters.com/vb2/sho...=easy+recovery

and this one:
https://www.hystersisters.com/vb2/sho...=easy+recovery

Don’t let negative posts scare you. There are a lot of women who did very well. You just don’t hear from them often unless you ask to.

Dear Jane,

I think it's a great thing for you to take charge of your own care -- getting opinions, doing research, and then making your own decision. I wonder if you can't find a doctor who will respect this approach to healthcare, as your current doctor apparently does not. Being a great surgeon not only doesn't mean that he has good bedside manner, it also may not have anything to do with skills of watching and waiting and trying to prevent the need for surgery.

What Donna says is true -- many of the women here do have uneventful recoveries from hysterectomy. Others do not. The point is, hysterectomy IS major surgery, and that's always a risk. Therefore it does seem prudent to avoid it if at all possible, and, conversely, to embrace it if it does become necessary.

Meanwhile, Jane, do you have plans for ways to assist your body in getting better (which it obviously is doing)? Have you looked into any alternative or complementary therapies for dealing with cancer? I'm a big believer in that as a way of assisting the healing process, and I highly recommend it to you, especially since you want to avoid surgery.

Best of luck to you, Jane -- I hope you will always be well.