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Help me to understand Help me to understand

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Unread 07-23-2002, 02:46 PM
Help me to understand

Dear Sisters,

My sister has just been informed that she has to have a cone biopsy or the LEEP procedure due to cervical cancer. The doctor says it is due to HPV 16. He did a test on her ovary where he inserted a needle through the abdomen and obtained some cells. This test did not come back clear and he believes that the lymph nodes are affected in her neck and underarm as well. WHAT DOES THIS MEAN??????? Please help me and my sister to understand what is going to happen. Please don't be afraid to be honest.

Thank you

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Unread 07-23-2002, 04:14 PM
Help me to understand



Unread 07-23-2002, 05:40 PM
Help me to understand

Sorry to hear of your sister's diagnosis. Your sister's doctor is the best person to ask for the test interpretation. Any cancer diagnosis is shocking and I think we all go through a real grieving process before you can begin to think positively. I focused very hard on being positive prior to surgery and with my post-op really helps!

HPV (human papilloma virus) is what my doctors told me causes the majority of cervical cancers, and the assumption was that I also have it. My GYN/Oncologist put it very simply to me when I talked to him last month about it...he said he thought most women today had it in their system and he basically told me not to be concerned about it, but to go on and enjoy my life.

I had a routine PAP smear in December and was told it was abnormal in January. In January I had a colposcopy and some cervical biopsies were taken. I was told I needed a cone biopsy, which I had at the end of February, and it was confirmed that I had invasive cervical cancer. At that point, I started looking at for types/grades/treatment of my cancer. I would recommend looking at that site, just to know that the treatment advised falls within the national guidelines.

I had to wait for the cervix to heal after the cone biopsy for six weeks (there could be more bleeding during hysterectomy if it is not healed well), then I had a radical hysterectomy with lymph node dissection. My cancer was all within the cervix, and it did not spread to the lymph nodes. I do not require chemotherapy or radiation therapy since it stayed in the cervix, but I do go back for PAP smears of the vaginal wall every three months for two years, then every six months. I also get a yearly chest x-ray.

Sounds like you are a good support for your sister. Hope her doctor has more answers for her soon. It's also a good idea to jot down your questions on paper, so you don't forget to ask them when you see the doctor!

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Unread 07-23-2002, 05:48 PM
Help me to understand

All Cervical cancers are caused by HPV. A cone biopsy is where they remove a small section of the cervix and then biopsy it. This is done under general anesthesia. A Leep is less invasive. As far as I understand it they also remove some cells and destroy some cells. With both of these procedures the doctors can get an idea of the stage of the cancer. I am not sure about the removing fluid from the ovary. Your sister should ask her oncologist why he feels the nodes are involved and what all of this means.
What brought your sister to the doctor? Was she having symptoms or was this a routine exam?

I had stage 1A cervical cancer. I had the leep followed by a hysterectomy.

Unread 07-23-2002, 07:24 PM
Help me to understand

s Charlotte

It looks like you have already gotten lots of good advice in regards to your sister's situation. I would just like to make sure that your sister is seeing a gyn oncologist. They are the experts when it comes to gyn cancers.
Please give her our best. Hope you keep in touch.

Unread 07-24-2002, 01:31 AM

You have gotten some great advice. However, all cervical cancer is not caused by HPV. Some can be caused by other factors including genetics or exposure to in-vitro drugs. I am an offspring of a mother who took DES during pregnancy. It is now known to cause gynecological cancers, specifically clear cell carcinoma that effects the cervix and vagina. All women with these cancers do not carry the HPV virus. I also do have HPv, and it is estimated that 80 percent of all women will carry at one time or another. It hides deep inside your body, and some women it does not effect as much as others.

I have cervical cancer 111a, which spread to my lymph nodes. The specifics of your sisters situation, should and I am sure will be discussed with her doctor. I would ask at this point, why he thinks her lymph nodes in the upper region of her body would be effected. They usually stay isolated to the pelvic region if it is cervical cancer. I am also wondering, like yourself, what else could be going on. What cancer does the Doctor feel it is if there is not a specific diagnosis yet? My armpit (axilliary) nodes were also removed, but they were removed because of a totally different cancer than my cervical cancer. It is necessary to determine the stage of INVASIVE cancer of the cervix by biopsy through a cone biopsy or leep first. What stage pap smear did she have? Ask what the doctor meant by "nodes are not clear." Also, if this was done by her gynecologist, I would seek out a gyne-oncologist at this point to do her leep or cone biopsy. This is what I did when I had bad pap telling of cancer. (not pre-cancer).

Again, this is just my experience. You might want to go with your sis for her next appoinment, or have her bring a pen and tablet with her to ask these questions. My thoughts and prayers with you and your sister. sss and sss Feel free to e-mail me anytime.
Unread 07-26-2002, 02:04 AM

It looks like you are getting some really great advice! I just wanted to second what Beachgirl said. All cervical cancer is absolutely NOT caused by HPV. This is a common misconception and one that makes alot of women ashamed to be checked for or to admit they have cervical cancer. All HPV does not turn into cancer (although the percentage is high) and all cervical cancer is not caused by HPV. Sorry.....just had to say that.

Unread 07-26-2002, 09:45 PM
Help me to understand

Ditto susan! Thanks for the input!!!! ssss to you!
Unread 07-27-2002, 06:23 PM
Help me to understand

(((Charlotte))) and (((Charlotte's sister)))

Welcome to Cancer Concerns !

I am sorry for this concerning event that is occurring in your lives right now. Charlotte, this is so kind of you to be exploring things for your sister. Please make sure to forward on those hugs to her.

You've gotten some really good input from some of the sisters here, and I hope it has answered most of your questions. I wish I had a good response about the lymph nodes or ovaries, but I think you will be best off discussing this with the doctor. It sounds like maybe a gynecologic/oncologist would be in your best interest, if you are not already seeing one. They are really the experts when it comes to female cancers, so try to arrange a second opinion with one ASAP.

I know this is a worrisome time for you, and it is somewhat disconcerting to hear that you have a virus that is causing problems with your system. And it's VERY uncomfortable to hear that it may be a sexually-transmitted virus that is causing this problem. This is nothing to be ashamed about. I remember reading a study once that said that 10% of women contract HPV during their first sexual contact. And Leslie is right--the studies do say that 50-80% of women carry it in their system at some point. So a lot of women have been exposed and never even knew it. It's a very common virus. There are many different strains of it. And some people's immune systems seem to be able to take care of it better than other people's systems. It's a mystery. But, while not all cervical cancer is caused by HPV, the vast majority (99%) of it is. And the ladies are right--having HPV does not mean you are going to get cervical cancer--it's only a risk-factor for cervical cancer.

I hope all goes well. Please feel free to come back and post as often as you would like. And Charlotte, please invite your sister if she has internet access. We all need help and encouragement through this and we are always open! Good luck! Let us know how things are going.


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