Need Advice...

I was 6 months late having a pap this time and the pap came back as mild abnormal cells.  My Dr. told me to come in for a colposcopy and she did a biopsy.  While there, she told me it did not look bad and that I would just come back in 6 months for another pap and by then it would probably be ok.  Well, she calls back 3 days later and tells me the biopsy was worse than she thought.  (or rather her very RUDE nurse calls back with this information).  I am at a high CIN 2, which from my research is moderate dysplasia.  She wants me to come in for a LEEP this week.  I have been reading that some LEEPs do not get everything and/or you have to get additional LEEPs within 6 months or a year even after the first one.  I have read that some people do not have any problems at all afterwards and that the LEEP is the "cure" for this. 

My issue is this... (other than my dr's lack of interest in calling me personally and talking to me and the fact her nurse is evil...)  My mother had cervical cancer, chemo and all.  She survived, but I was a little girl and have the memories of thinking my mother was going to die and her hair and eyelashes falling out.  (I have a 3 year old and an 8 months old and would like to prevent them from having to see that if possible).  My cousin (on my mom's side) had CIN 3, which was diagnosed eventhough her pap was on time when she was 27.  (I am 28)  She had most of her cervix removed, her doctor only left part, which he really didn't want to do, b/c she had not had children and she wanted one so badly.  My grandmother and aunt (again on my mother's side) had cervial cancer and ovarian cysts which were treated by a full hysterectomy.  I have asked to just have my cervix removed, or have a hysterectomy as I am through with having children and I don't have the time to have procedures done every 6 months.  Is this is crazy request?  Should my doctor consider it?  It seems to me like she is blowing me off every time I mention it.  I should also mention that I have periods so bad that I pass out from the loss of blood!  Please let me know if any of you have supportive answers or tell me if I am just being ridiculous and need to just suck it up and do what the dr says...

 

On 3/10/2008 Harmony5264 wrote:

I was 6 months late having a pap this time and the pap came back as mild abnormal cells.  My Dr. told me to come in for a colposcopy and she did a biopsy.  While there, she told me it did not look bad and that I would just come back in 6 months for another pap and by then it would probably be ok.  Well, she calls back 3 days later and tells me the biopsy was worse than she thought.  (or rather her very RUDE nurse calls back with this information).  I am at a high CIN 2, which from my research is moderate dysplasia.  She wants me to come in for a LEEP this week.  I have been reading that some LEEPs do not get everything and/or you have to get additional LEEPs within 6 months or a year even after the first one.  I have read that some people do not have any problems at all afterwards and that the LEEP is the "cure" for this. 

My issue is this... (other than my dr's lack of interest in calling me personally and talking to me and the fact her nurse is evil...)  My mother had cervical cancer, chemo and all.  She survived, but I was a little girl and have the memories of thinking my mother was going to die and her hair and eyelashes falling out.  (I have a 3 year old and an 8 months old and would like to prevent them from having to see that if possible).  My cousin (on my mom's side) had CIN 3, which was diagnosed eventhough her pap was on time when she was 27.  (I am 28)  She had most of her cervix removed, her doctor only left part, which he really didn't want to do, b/c she had not had children and she wanted one so badly.  My grandmother and aunt (again on my mother's side) had cervial cancer and ovarian cysts which were treated by a full hysterectomy.  I have asked to just have my cervix removed, or have a hysterectomy as I am through with having children and I don't have the time to have procedures done every 6 months.  Is this is crazy request?  Should my doctor consider it?  It seems to me like she is blowing me off every time I mention it.  I should also mention that I have periods so bad that I pass out from the loss of blood!  Please let me know if any of you have supportive answers or tell me if I am just being ridiculous and need to just suck it up and do what the dr says...

I'm old enough to be your mother, but, after dealing with some wonderful doctors and nurses when I was treated for cervical cancer, I finally learned that all the personnel you encounter in a medical setting (doctor's office, front desk workers, medical techs, nurses, etc.) should treat you with the utmost respect.  As patients, we feel vulnerable and anxious.  The least they can do is not ADD to our anxiety.

Before you make any decision, please get a second opinion.  Your insurance should pay for this.  If your current doctor (who sounds like she is in need of an attitude adjustment along with her nurse) gets angry that you want a second opinion, then you should walk out with your file and find another doctor.  It is not your job to boost your doctor's self-esteem.  Do you live near a major cancer facility or medical school? 

I am wondering if your insurance will pay for a hysterectomy, without first going through the protocol (a few colposcopies, LEEPs, etc.) for a woman with CIN 2.  Even though a hysterectomy in a situation like yours is like using a hammer to swat a fly (in my non-medical opinion), with your family history, it seems very reasonable.  Good luck.

I am also 27 and had a bad pap to come back, then had a cold knife cone biopsy which came back severe displysia my DR gave me the option after the biopsy to have a hysterectomy because I am also finished having kids. I would definetly get a second opinion because if you are done having kids seems like you would just want to get rid of the problem. You don't want to let it go to far that a hysterectomy is to late. My DR promised me that if my biopsy came back and it was not cancer he would do everything he could to keep me from getting cancer. He assured me that this was the best option for me because I would continue having paps every 3 months and biopsy for years to come.But still left it up to me didn't pressure me just gave his honest opinion. It is safest to just get rid of the problem. Please get a second opinion you need a DR that is concerned for you and your children as well. My surgery is next Friday. I will keep you in my prayers and thoughts good luck and keep in touch let me know what happens!

Thank you all for responding.  I am glad to hear I am not the only 27 year old that thinks it is ok to have a hysterectomy.  I talked with the actual doctor today and she told me it was up to me.  She said she didn't like doing the hysterectomy until the LEEP comes back, but with my severe periods she would go through with the surgery instead of the LEEP track.  I still think I may get a second opinion and see what happens.  I have a doctor that I should have never left and almost feel guilty going back to him.  He delievered my first child and then I went back to him and was pregnant, I miscarried the baby.  I was distraught to say the least and I swore I would not go back to that doctors office again.  I knew and I know it wasn't his fault, it was just the memory of the whole thing.  Well, I left and haven't been satisfied with a doctor since.  I think I may go to him and see what he has to say.  At least then I wouldn't have to wait for a new paitent appointment :)  In my opinion, like you said, if there is a problem with it, take it out. 

I was 29 when I had my Hysterectomy...I had to fight for it, go to different docs, and finally settled on the on who actually READ my files and understood what I had been going through.  He  told me I was "too young to have this happen"  but was not going to let me die because of my age! ;)  Get a second, even a 3rd opinion, and do whats right for *YOU*.

Best of luck,

Lori 40 in California
1990-1997 HPV, LEEP, 5FU
June 1997 Hysterectomy~Endometrial and Cervical Cancer
Dec 1998 Lumbar surgery
Aug 2001 Lumbar surgery
Feb 2008 Vulvar lesions excised,Vaginal biopsies performed.
March 2008 VIN3

May your Joy be Pure Joy,
and all your Pain, Champagne...

Get a second opinion and another biopsy, especially given your family history. I'm more than a little skeptical of your doctor, especially since she seems a little too overeager to press the button on that electric knife. You also need to look at the lab report and your new doctor needs to give you a thorough and honest discussion about the kind of dysplasia you have and how extensive it is. You also have several options. LEEP is a good methods for a lot of women, but it's not the best methods for all women and for every case of dysplasia. I'm suspicious of doctors who don't discuss the risks and benefits of all methods of partial amputation before recommending one and then honoring the patient's decision.

But get a new doctor as soon as possible. Your family history puts up a red flag.

Well, I have actually called an old doctor of mine about everything.  I should have gone to him anyway, as he really is a great doctor, caring, experienced, knowledgable, etc...  About 2 years ago I went to him very happy I was pregnant, but yet again, I knew something wasn't right. It was a waiting game and I knew I was going to miscarry in the end, but no one would tell me that (how would they, no one but myself knew for sure).  Anyway, I transfered all my grief onto the doctor and the hospital, instead of dealing with it head on.  (Can anyone guess what my degree is in???)  I just never went back, ended up getting pregnant a few months later and found another doctor at another hospital.  Although I like her, my husband's insurance changed and will pay 100% only at the hospital he works for, so I am back to where I swore I would never go (b/c of my transference of grief).  Anyway, when I really think about it, this man is the only doctor I have EVER felt comfortable with and was totally trusting in.  I talked with his nurse, had my results sent over to them.  The nurse called me back and told me he looked over them and would suggest a hyster if that is the way I was leaning.  He said we could try everything else, LEEP, follow up pap, wait, etc..., but with my family history, with the HPV, with the fact each test is coming back worse, he feels like I do, take it out and get it over with.  Rather take it out than come up too late.  So, I have an appoitment with him Thursday to talk about things and his nurse is trying to get me on his surgery schedule soon.  I sometimes feel this is a very drastic move, but it horrifies me to think that I could try a few other things and something may happen and would then be too late.  I know cancer doesn't spread overnight, but I also know that some spreads and grows faster than others... The nurse I talked with today (from my old dr's office) told me that it was the high risk strain.

Go to a gynecological oncologist and get their opinion. They are not only experts at treating cancer, but they are also experts at treating patients with pre-cancerous conditions. Understand that you must be aggressive in getting answers and must be your own advocate.

My daughter had an abnormal pap smear when she was 23, but was never notified by her obgyn. She assumed no news was good news. She was seen three times by different doctors in the same practice after that with increased bleeding symptoms and the abnormal results were still never discussed with her. One doctor never even looked at her records.

She was finally diagosed with invasive cervical at 25. She went to a noted GYN Oncologist in Phila and had a radical hysterectomy and due to trace lymph node involvement, had chemo and internal and external radiation immediately following the surgery. She got outstanding care from her doctor with aggressive followup and screening.  She was cancer free for more than three years.  At 28 the cancer returned with a vengeance. We took her to three of the top cancer treatment centers in the country for second, third and fourth opinions. All they could do was validate the treatment that her doctor in Phila was giving her. They had nothing new to offer. For some unknown reason she developed a resistance to the chemotherapy chemical she was being given, and it had no beneficial affect. She passed away at 29.

I do not mean to frighten you or anyone who reads this by telling my daughters story. I am only trying to make you understand the importance of taking control of your health care. Cervical cancer is one of the most preventable and treatable cancers in the US, but only if it is caught early and aggressively treated. If not, it can be extremely aggressive and deadly.  Because screening and early treatment are so effective in this country, there is literally no research being done to find effective treatments for more advanced cases. 

Please understand that I am writing this in an effort to reach as many women as I can to stress the importance of taking a hands on approach to managing your health. Demand copies of all test results, insist that your doctor explain the results to you so you understand what is going on. Seek all options and definitely get a second opinion. No one should ever have to go through what my daughter did. If she had demanded  timely and aggressive care from her doctors from the beginning, she probably would be here today. 

Do what you know is best for you, and you will be fine.  My prayers and best wishes are with you.