HGSIL w/ gland involvement - my story (resurrected thread)

hi everyone,

i posted a follow-up to my original thread. i was diagnosed with HGSIL w/ gland involvement (CIN2/3) in 12/08. after following a 3-4 months vitamin regimen, results from tests last week yielded:

5 biopsies (in 3 quadrants) = benign/normal

ECC = mild dysplasia

previous ECC always yielded benign/normal

please read:

http://www.cancercompass.com/message-board/message/all,32437

women on this thread have had successes with vitamin therapy in lieu of cone biopsy , and i would hardly call mine a success story due to the ECC results. but i'm hoping that this is a mistake in accuracy and will have the ECC repeated. 

I read both of your stories and that is great that the vitamins are working..yes? I am so confused in that my results hit me all at once and this seems to be going bye so fast. I too was diagnosed with HGSIL (CIN 3) 2 weeks ago. Last week I had the colposcopy and the results the nurse called me with was negative. That's it, just negative for cancer. No other info. I have a LEEP procedure tomorrow and to be honest they make it sound like it's no big deal. I am 34 years old, 2 kids (not having anymore) and the doc makes it sounds like she'll just go in and clean it out and I need to be diligent about follow up PAP's every 3 months. So is that it or is there more? After reading through these posts it seems like there are other options and that I may be waiting on more results after the LEEP. Doctors definitely need to fill their patients in more and I have a list of questions for her. If anyone who has gone through this (like you) any suggestions on questions that should be asked would be helpful. Thank you

I'm sorry the ECC came back with mild dysplasia. I'm glad you are seeking another opinion, though. However, was there any mention of glandular involvement, this time around?

Something I have heard from women is that their doctors dilated them to have a better look inside the endocervical canal. I realize this would cost insurance companies money and take up doctors' time, but it sounds like a great idea to me. Have you considered this? It could give you a better idea of what you are addressing.

My concern for you is endocervical dysplasia is a more serious problem.

Are you working with a naturopathic doctor, via Dr. Tori Hudson, or with a holistic doctor, or with an acupuncturist/herbologist? I respect your choices, but I think a trusted professional is the best person to help a patient.

babies, there are options out there. i wish that more women would question his/her doctor the validity of his/her recommendation for treatment.

herenow, the ECC findings was consistent with PAP performed on the day the biopsies were taken. both ECC and PAP were CIN1. i'm hoping that the ECC result was due to the 'drag' phenomenon, or accidental pick-up from the inner cervical area (where pap was performed). the biopsies that were obtained were on the periphery of the cervix, which were the only regions which stained acetowhite; they came back as benign. the oncologist assured me that this is NOT cancer, however he still recommending a cone biopsy. i am meeting with another gyn who came highly recommended on monday for second opinion. 

hearing the PAP result for CIN1 made me feel a little better. i would be way more concerned if the ECC showed CIN1, and the PAP and biopsies were benign. 

thanks for the recommendation for a holistic practitioner, but i am not seeking that route yet. 

i now have the lab report in front of me, and may have been given results that were more alarming than actual.

ECC dx = 'minute focus of low grade squamous intraepithelial lesion (CIN 1)' and 'fragments of beign endocervical glands'

Biopsies = 'benign cervical mucosa from transformation zone'

i went in for second opinion from an OB/GYN, NOT oncologist, and he was absolutely great. he examined me and took another ECC and PAP. assured me that everything looks fine... that we'll likely just monitor it, and this should go away on its own. 

we talked about the standard for treatment of HGSIL with cone biopsy, and how i often felt swayed that maybe i should go along with cone biopsy as well... but my instinct told me otherwise. he stated that the oncologist i went to is certainly one of the best, but he's oncology (primary concern is to prevent cancer). we both concluded that sometimes the treatment for HGSIL is too agressive, when more likely than not, we can wait and monitor. and take multivitamin supplements and get off birth control pills. the infertility/ability to carry full-term is a big concern for me. 

i will update results for ECC, but am feeling hopeful. 

i wish more women out there will make a more informed decision, and be able to find a physician who also believes in you. 

 

On 5/18/2009 maureenk wrote:

i now have the lab report in front of me, and may have been given results that were more alarming than actual.

ECC dx = 'minute focus of low grade squamous intraepithelial lesion (CIN 1)' and 'fragments of beign endocervical glands'

Biopsies = 'benign cervical mucosa from transformation zone'

i went in for second opinion from an OB/GYN, NOT oncologist, and he was absolutely great. he examined me and took another ECC and PAP. assured me that everything looks fine... that we'll likely just monitor it, and this should go away on its own. 

we talked about the standard for treatment of HGSIL with cone biopsy, and how i often felt swayed that maybe i should go along with cone biopsy as well... but my instinct told me otherwise. he stated that the oncologist i went to is certainly one of the best, but he's oncology (primary concern is to prevent cancer). we both concluded that sometimes the treatment for HGSIL is too agressive, when more likely than not, we can wait and monitor. and take multivitamin supplements and get off birth control pills. the infertility/ability to carry full-term is a big concern for me. 

i will update results for ECC, but am feeling hopeful. 

i wish more women out there will make a more informed decision, and be able to find a physician who also believes in you. 

Why did your doc want you to get off birth control pills? I have been told that they aren't an issue.   

there has been numerous studies and confirmation that extended use (5 yrs or longer) of BCP can cause cervical dysplasia. BCP are known to deplete folic acid levels, so if you are taking BCP, it would be best if you take 800 mcg of folic acid daily. i decided to come off it and take folic acid supplements as well. 

I have also read that as well (BCP).  I have asked my OBGYN about this in the past and she said they were safe to take for extended periods of time.  I asked her again last week after reading that they could cause problems relating to abnormal cells/cancer.  My doc said that people used to think BCP caused problems most likely because women who were taking them were not protecting themselves in other ways.  I'm sure this is probably true, but I will look into it further.  If you have any websites or articles at hand I would appreciate it.  Thanks again!

a good general review of BCP use increasing risk of cervical cancer (and other female cancer) can be found here:

http://www.cancer.gov/cancertopics/factsheet/Risk/oral-contr

primary literature is also cited in the article. hope this helps. on a side note, the warning label of my BCP also cites that it may "increase the incidence of cancer of the cervix". and i agree that behavior plays a large role as well. but i'm trying to minimize potentiating factors.

 

Here's my stuff:

I have always had normal Paps until this March.  Mine
was abnormal(slight yeast infection.. didn't even know it) and HPV Positive.  I went in for another exam.. I forget
what it was called.. used a microscope/light.  Anyway.. I had abnormal
cells.  My doc did a biopsy.  It was uncomfortable.  My results came
back as CIN3. 
My doc did not expect to see this has the PAP didn't match.  She thought it would be CIN1.  She had my labs retested.  She
also took the slides to the hospital and had another pathologist look. 
She looked at them herself.  All agreed that it was severe (CIN3).  I
am scheduled for a LEEP in a few weeks.  I am, of course, very scared
and nervous about all of the negative things that may result.  I have a
consult tomorrow and to get all the paperwork, etc that I need and
questions answered.  I like my doc and she seems very thorough.  After reading through all this, I have many more questions.. like what about the inside of the certix? Should/Do I need to see an oncologist?  Also,
I am 29 with no kids.  I'll let you know what happens.