Symptoms/Biopsy Results

I just learned that my cervix & part of my upper vagina are covered with HGSIL (high grade dysplasia). My doctor feels confident that I don't have cancer, but wants to do a hysterectomy to eradicate the dysplasia. I felt great after I left the appointment yesterday, thinking my biopsy report will be okay. After reading more about it, however, I'm terrified to get the results.

I didn't really have any symtoms - I had some spotting between periods for a few months, but it was always during ovulation. Otherwise, no 'real' symptoms. I didn't spot after my Pap Smear. In fact, I haven't bled from the biopsy (2 punch biopsies taken during the colposcopy).

If I didn't experience pain & bleeding, would that be a 'good' sign? I'm not really cramping from the procedure, either. What would be a normal reaction? If I have cancer, would I be bleeding, or feeling pain? He didn't notice anything abnormal, like vascular growths or polyps. I want to trust my doctor - he seems confident and competent.

Any thoughts?

Thanks!

Angela

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16 replies. Join the discussion

angela, i'm sorry to hear you're going through all of this. even dysplasia (pre-cancer) is scary. i hope the biopsy results aren't anything unexpected.
did the doctor discuss other options with you? such as leep, cone biopsy, etc.? a hysterectomy is major surgery, and can also have many subsequent consequences.
as for symptoms, most women with dysplasia, and even those with cervical cancer often have no symptoms at all. if a biopsy didn't tell me that i had dysplasia, i wouldn't have a clue that anything was abnormal. and, sometimes i've had bleeding after a biopsy, other times not.
i encourage you to explore your options. and come back here for support, to share, etc. I think this growing community is a great place.

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Angela,

When do you get the results back? You may want to look up your local GYN Oncologist and see if you can get a 2nd opinion from them on both the diagnosis and recommended course of treatment. They will know for sure what stage you are at and have more expertise in this area. I really liked my doctor and both my husband and I felt he was competent; but going for a second opinion was the best thing I did and saved my life. I felt like I was betraying my regular doctor but in the end it's your body, not her or his. There is a procedure that you may be a candidate for where you can preserve most of your uterus; so you need to ask about that if you want to retain your fertility. Based on how your staged that may or may not be an option; again you really need to look out for yourself and get to the best doctor possible. I can't find the spelling right now and won't attempt it; but a hysterectomy seems a bit premature to recommend without your biopsy back. We didn't determine that as the course of action until after I had a conization and had been diagnosed with 3b cervical cancer.

I know it's terrifying, but hang in there. I keep thinking to myself that it's times like this that you get to prove to yourself what you're really made of. Let us know your outcome Angela.

Cathy

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My doctor told me a LEEP or cone biopsy wouldn't suffice because of extent of the dysplasia - it covers my whole cervix and the upper portion of my vagina. Perhaps I should get a second opinion, especially after reading about other womens' experiences.

I'm so grateful for this network - I can't even describe it. I've always been able to handle most things, but this is truly one the hardest. My coping skills have been challenged & depleted. I haven't been able to sleep for a week. I have two boys - 16 & 13; the thought of having to go through anything is unthinkable. I really don't know where some women get the strength to handle all this. I've lost many family members to cancer, which heightens my fears. I can't wait till I get the biopsy results.....

Thank you for posting a comment - I really appreciate it. I'll let you know what the biopsy says.

Angela

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Cathy,

Thank you for posting your comment. I really think I should get a second opinion - that's excellent advice. I've always trusted doctors before, but with the 'c' word, I'm feeling a bit leary.

Is it possible to feel nausea? Ever since I found out I had the severe dysplasia, I've had horrible nausea, especially after I eat something. Could that be related to stresss, or does cervical cancer cause nausea?

I'm hoping to hear something tomorrow or Thursday. I'll let you know. As far as fertility - I'm 41 - have two handsome teenagers & didn't plan to have any more. Have to admit, a hysterectomy seems so drastic. This has been a nightmare & I don't know where you get your strength:) I think the hardest part is not knowing right now.

Angela

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I agree you should get a second opinion. But be sure it is from a gyno oncologist. Please keep us updated. I must add though that many women go through numerous procedures and end up getting a hysterectomy in the end so maybe your doctor wants to save you the years of pain and worry and just cut to the chase. Either way seek one more opinion then make your decision.

Talk to you soon.
Trish

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Dear Angela,

Please get a 2nd opinion from a gynecologist/oncologist. Never feel guilty about this! This is your right and doctors know this - they are not offended. Believe me, their wives get 2nd, 3rd or even 4th opinions! Be careful about asking your current dr for a 2nd opinion - there may be a conflict of interest (ex: sends you to a friend who rubberstamps his opinion - yes, this happens). Get your records, including pathology reports and find out if you are HPV positive and if so, with what strain (some are lethal, some are not). Ask if the biopsy got all of the dysplasia or is something left behind (find out what tests are available to determine this). Another cone may be indicated. There are different types of cone biopsies: ckc=cold knife cone and surgically excises or cuts the tissue away (scar tissue may form depending on how you heal), LEEP/cone is an electrocauterized cone and cauterizes the tissue but the margins may be more difficult to read because of increased damage to tissue. Laser or cryosurgery may be options depending on how advanced the disease is. The entire cervical transformation zone can be removed as an option.


Go to www.MNSage.com to read a primer created by a panel of doctors in Minnesota based on guidelines by the American Society for Colposcopy and Cervical Pathology (ASCCP), printed in JAMA, April 24, 2002 for primary care providers that addresses the evaluation and management of abnormal Pap smears - well worth printing out and reading and taking to your doctor (especially pg 20-21)

Go to www.HERSFOUNDATION.com to learn more about hysterectomy. There's a video you can view that explains the female anatomy - very straightforward, about 10 minutes long. The founder is circulating a petition to have people sign so that when a woman is considering a hysterectomy, her doctor would be required to give her this video. This is because far too many women have had hysterectomies without being fully informed of the consequences. Learning about our bodies and how hysterectomy affects it is NOT SCARY. Not getting information before a major, irreversible surgery IS SCARY. Again, you will be the one making the final decision, but trust me, you need to have this information up front. Dr. Winnifred Cutler wrote a book, "Hysterectomy: Before & After" and there are other books available, too. "Misinformed Consent" is a book written by Lise CLoutier Steele who, herself, had a hysterectomy, uninformed of consequences, and has pledged that this will not keep happening to women.

Just a few things to ask about effects: Does this contribute to prolapse? (rectocele/cystocele)
How will this affect my sex life? (if you are aware of uterine contractions during orgasm that enhance it, you may notice orgasms become flat and one dimensional because the uterus and cervix is now gone and your libido may not be like it once was) You will need to decide to keep the ovaries or not (there's no way I'd let him take mine unless there was proof of disease and even then, be sure you're not signing them away on your consent form!) 50% of women who keep their ovaries experience menopause sooner than they would have because of the diminished blood to the ovaries when the uterus is dissected away. So, you may need hormone therapy.
Obviously, there are more questions you will want to ask, hence my point for learning as much as you possibly can up front before making your decision.


Check out websites for Mayo Clinic, Sloan Kettering and the Cancer Treatment Centers of America. Google sites for info on HPV and the lethal strains (consider going to pathology sites). . Some of the strains can cause dysplasia, but, the dysplasia will regress back to normal. The lethal strains cause high grade dysplasias and CIN II & CIN III need closer attention as they are more likely to progress - but not always.

By the way, most hysterectomies are considered ELECTIVE unless you're in a life saving situation. Be sure to ask your doctor if this is a life saving situation or is the hysterectomy considered elective and will you be signing a consent form that states that this is elective surgery. Yyou need to have as much information as possible so that you can make an optimal decision for you. Feeling scared is normal, I would recommend you take a deep breath and try meditation excercises when you begin to feel stressed so that you can focus and keep a clear head. Enlist the help of someone close to you to help you gather, read and digest all the info. Take notes, ask questions and breathe!

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Trish,

I called a gyno-oncologist's office & was told I need a referral. From what I've read, I understand why my doctor might want to do a hysterectomy. I have HPV; I just don't know what strain. I asked my doctor if they 'type' the strains, but he said the treatment would be the same; therefore, no need to find out. I disagree - after hearing advice from other women who have been through it, it makes me wonder.

I'm still awaiting the test results - trying to hang in there in the meantime. My teenager's bad behavior is keep my mind off of things for now - didn't ever think that would come in handy!

Thanks again & I'll keep ya posted.

Anglea

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angela, like yours, my doctors have never thought it was important to find out the details of the hpv strain i have, and like yours, approached my medical care as focusing on the results of having hpv, dealing with the dysplasia. in fact, my recent pap showed negative for hpv high and low. yet, i have been dealing with dysplasia. my dysplasia history started long before all the detailed hpv tests, and bottomline, the doctors are only currently able to treat the dysplasia, not the hpv itself. hopefully that will change - soon.

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Hi Angela,

I have just joined the group and seen your post. I am sure you have received your results already and hope everything went well. I think everyone is different in their symptoms. I didn't have any symptoms either but when I had my biopsy everything didn't look normal so I was prepared for bad news but not cancer.

KJ

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KJ,

Thanks for your response & apologies for not posting my results to update everyone. I've actually been very nauseated this past week, leaving me without extra energy. My biopsy results did not 'match' my pap, so I'm scheduled for a LEEP May 30 & will await (impatiently) more biopsy results.

Do you mind telling me what 'didn't look normal?' Was it your biopsy, physical exam?

My pap indicated HGSIL: CIN3; my biopsy indicated 'chronic inflammation, atypia squamous cells ( a sample was taken from the transformation zone). If I didn't continue to have symptoms (cramps, discharge, discomfort), I would be very relieved. Because of a 2-grade discrepancy, my doctor will perform a LEEP instead of hysterectomy. For now, I suppose. I believe I'll need a hysterectomy in the near future (I hope for great health, but I also can't ignore the severity of my pap results).

I realize there is some disagreement about having a hysterectomy performed, but at this stage of my life (divorced with two teenaged boys), I don't plan on having any more children, and will allow my doctor to aggressively treat any precancerous dysplasia I have. After reading what other women have endured, namely all the procedures (paps, biopsies, LEEPs, cones), it seems as though some ultimately were diagnosed with cancer. I would rather be safe at this point in my life.

Cathy has posted sensible, insightful comments regarding hysterectomies & one thing I've learned from her, joanne & others is that we need to take care of ourselves. And, for some, that might mean going through more radical procedures, like a hysterectomy to reclaim our health.

How are you doing now? How are you spirits? I hope that you doing okay!

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Angela,

I am sorry to hear you are still waiting, the waiitng it horrible and the mind starts to imagine all kinds of things. I remember searching the interenet and I diagnosed myself with all kinds of illnesses. Stay strong and sane.

When I went in for my biopsy they wiped the cervix with a vinegar solution and there were a few spots that turned white and suspicious looking. I still never expected cancer, I was thinking they would tell me I had dysplaysia and would need a leep. I did not experience any bleeding or cramping from the biopsy. Cervical cancer was never anything I heard about.

After my dx (cervical adenocarcinoma) and visit with the oncologist he went over the pros and cons of a hysterectomy and chem/radiation and I chose the hysterectomy. I was 38 and had 3 kids but was not planning on any more. I thought the side effects of the chemo/radiation would be worse then the hysterctomy . I have never regretted choosing the hysterectomy, I had a radicall hysterectomy, which included the upper 2/3 of the vagina and a bilateral lymphadectomy. I am experiencing a little swelling from the lymphadectomy right now but nothing too bad. Actually, I think it was last week that I read something about a study that was done regarding the long term success rate of a hysterectomy vs. chemo/radiation and it was very encouraging but I am sorry I don't remember the details or source to share with you. Again, everyone is different.

How are my spirits? I think cervical cancer is emotionally difficult because it is a gynelogical cancer, a very private part of your body and I don't think people feel comfortable asking how you are or want to talk about it but yet it is on my mind all the time. Right after the dx and surgery I was an emotional mess but I am doing much better. I appreciate you asking.

Please keep me posted on your results, I will keep in you in my thoughts and hope for the best. Take Care,
KJ

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Angela

I truly hope for the best for you. My original pap showed ASC-H and the biopsy showed CINII. When the LEEP was performed it showed invasive cervical cancer stage 1a2. I just underwent the hysterectomy and bilateral lymphadectomy and I am awaiting the pathology reports. I will be sendin positive thoughts and just know you are doing what you need to. We all need to listen to our bodies and do what is right for us. Keep us posted on your progress and remember you can always come here to vent and ask questions.

Dawn

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Dawn,

Sorry for the delayed response. My LEEP was performed May 30 & I received my results from the nurse late Friday afternoon. The histology report indicates mod/severe dysplasia; focal endocervical glandular cells consistent with H.P.V.; all lateral margins negative. Fortunately, no cancer cells present, but I wonder why it doesn't read 'all' margins clear. Perhaps 'lateral' means all sides, just different way of phrasing it.. I'm not certain, though. I won't know what it means till I meet with my doctor.

I have an appointment with my gyn in three weeks to discuss the results. I have more information with this pathology report - no more 2-grade discrepancy - but I still have concerns. The nurse believes that I'll have follow-up paps every 3-4 months for a year. Originally, my doctor had wanted to perform a hysterectomy based on the original PAP results of HGSIL. I'm interested to see what he suggests for treatment.

I really can't imagine what other women with more severe outcomes feel. I hope the wait for your pathology reports goes quickly, if that's at all possible! I also hope that you have excellent results. I agree with you: we all need to listen to our bodies & do what is right for us. At the end of the day, we are our biggest advocates, no matter what others think. At my age, I'd rather err on the side of paranoia, than overlook a hidden tumor. (Did I say that right? lol!)

Please keep me posted with your results - I've actually thought of gathering stories from women to write some type of informal, informational collection of testimonies. So often, cervical cancer is seemingly asymptomatic until it reaches later stages. I believe, however, that women often look back after a diagnosis & discover that there were problems. Problems ranging from slight bleeding to painful intercourse. The more we educate ourselves, the ealier the detection, the better our outcomes will be.

Angela

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If you like to read other stories from women, consider reading the Survivor section of the NCCC www.nccc-online.org You will read many stories from women batteling both cervical cancer and precervical cancer issues. The NCCC also has the cervical cancer quilts with quotes from women and family members.
Best regards.

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Thanks for the information! I will definitely visit the site & read the stories.

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Hi Angela,

I can understand your emotions. I was diagnosed with Adenocarcinoma insitu, which is essentially stage 0 glandular cervical cancer, which is the more aggressive and trickier of the two types to erradicate (the other type is squamous, which is surface cell cancer) anyway.. this was three years ago.. I was 27 and I first gyno oncologist that I had to go to.. told me radical hystorectomy. This type of cancer was too aggressive and it was too scary to not do anything. MInd you... I had had no children yet and that is all I had ever dreamed of. I decided I had to get another opinion. Gyno oncologist #2 a specialist affiliated with Standford univesity told me that it was not as serious as I thought and to wait and watch and follow up with paps every month. Okay.. could I have received two more different opinions.. I was sick to my stomach.. losing sleep, weight and didn't know what decision to make because these so called " specialists" were giving me two totally different types of treatment plans. I finally went to gyno oncolgoist #3 and he said to atleast have a cone biopsy. I was also diagnosed with HPV (one of the high risk ones that cause cancer) . At my cone, I did receive clear margins, and I am thankful for that. My point of all this is that YOU have to be an ADVOCATE for you health and fertility and emotional health. My experiences with my three doctors showed me that even if they specialize in a certain area, they choose treatment plans based upon how liberal or conservative they are. Get a second or third opinion if that is what YOU need to make your treatment plans. Good luck to you. You are very strong and brave!

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