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Hi, I my name is Ashley, I am 21 years old and i just found out I have cervical cancer. Its only stage 0, carcinoma in situ. My gyno decided not to do anything, they said it will either go away on its own or, we will take care of it when it gets worse. I would like to know if they are right. Should i really wait to see if that will help it. I really hope somebody can help me..
Cancer Surgery Hysterectomy Miscarriage Cervical dysplasia Cryosurgery Cervical cancer Pain HPV Carcinoma in situ Folic acid Stress
cervical cancer is covered under medicaid right?
I know this is straying from topic a little but everytime I hear someone mention they can't afford to go see another Dr. is makes me sick. I live in Canada where healthcare is universal and am praying that your new President will make this happen in the US. For someone to be sick (especially life-threatening) and to have to worry about whether or not they are able to afford healthcare, to not know whether or not they are receiving the best care that can be provided is absolutely appaling. I beg everyone to turn to their local Cancer Society and any other organizations that help in these situations to get yourself set up for good care so that you can concentrate solely on getting better.
Hi
Sorry for what your going thru.. everyone is basically right.. Please Please see another Dr. Do not accept that as an answer.
Holla any time
I also was diagnosed with CIS on October 15th after a cone didn't provide clear margins. Well Gyno wanted to take the wait and see approach. I went to see an gyno/onco and he told me to wait and see as well. I do not have a strong immune system as i have been fighting this fight for over a year now and it hasn't cleared up on its own. So I just thought I would through that in there. My gyno wants me back in there for a pap/ecc on Dec 1st but the gyno onco told me I shouldn't be going back for more tests until Feb or March. I'm confused on what I am supposed to do as well.
Ash,
Sorry if you have 2 of these from me.
Please contact the American Cancer Society. They can help you find the best gyn & gyn/onc in your area. They can also help you with the options you have financially for help. They helped me.
I went to my annual exams like clockwork every January, same dr for over 10 years even! The ndue to insurance conflist I had to change Dr's. Finally at 36 I was tolks that HPV can be in us adults (I thought it was just for hte young ones based off the commercials) I said yes, do the test and whammo! After all these years of clean & clear paps, mine was suspicious as well as I had HPV.
My Stage IB1 CC developed in less than a year. Cancer doesn't play fare. Please make sure you get all copies of your tests, treatment options.... I was overwhelmed with it all. I had a notebook that I kept with me and as I thought of questions, concerns... I would jot them in the book. Then at my appointment I would just run down the list and write the answers. I would also take somone with me so I had a spare set of ears
From the ACS I also received a wealth of information on HPV, Cervical Cancer and all the related treatments and options it also included a glossary so I could understand what they were talking about!
Please also know HPV can be contracted from any genital to genital contact. Condoms are not a 100% guarentee to not contract it. It can also lay dormant for over 15 years and there is no way currently to date when you contracted it. I believe I read over 97% of all adults have been exposed at some point in their life.
When talking to your Dr's, please make sure they have in writing for you your HPV status and strain (should have been determined) as well as your CN and other status, make sure you know what tests, biposies.... have been performed on you and you have those actual results from the labs.
Good luck, please visit your dr's regularly and seek the help that is out there to make sure you get the best care possible.
Use your support system for strength and help and know we are here to lend our thoughts, share our experiences and help guide you in the best way we know how as women.
Lots, of love and hope,
DLHMK
hi that's kind of weird because when u are diagnosed with cervical cancer its best to remove it because it cant go away on its own it only get worser over a a mattter of months but do remeber that cervical cancer takes a while to develope so i perfer for you to ask more about it
Dear Ash,
Ok...I'm jumping in here a little late, but, had to write.
Your doctor should not be getting 'mad' at you for wanting to know about your health and the relationship of HPV to cervical cancer! It is really important that you see a qualified doctor who can provide you with accurate information. You have a right to know your diagnosis and all of your options that can be done in a timely manner. While it may be hard, it is not impossible to find a doctor like this. I would also suggest you get all of your medical records.
I do not wish to scare you. CIS (carcinoma in situ) is stage 0 or the stage before cancer becomes invasive. I have read that some women have remained status quo, or unchanged, for a long time at this stage, however, I don't think there are statistics from any study on this based on the fact that it would be unconscionable to allow women at this stage to go untreated and risk invasive cancer.
Has a LEEP ever been recommended?
And finally, I do not agree with your doctor's judgement that you had to have sex at an early age or had to have multiple partners to contract HPV. While these are certainly risk factors, they are not absolutes. As a matter of fact, there's an interesting couple of paragraphs in a book called, "The Health Professional's HPV Handbook", Editors-in-Chief, Professor Walter Prendiville and Dr. Philip Davies, pg. 44, "Studies using questionnaires have addressed the role of sexual behaviour of the husbands or sexual partners of cervical cancer cases in disease transmission, while more recent investigations have also tested for HPV DNA in exfoliated cells from the penile shaft, the coronal sulcus and the distal urethra. Such studies have consistently shown that the risk of developing cervical cancer for a woman is predicted as much by the sexual behaviour of her partner as by her own sexual behaviour." and pg 45, "These studies provide a virological basis for clinical observations that have led to the scientific hypothesis that male sexual behaviour is a central determinant of the incidence of cervical cancer." So, this is saying that you may only have had one partner, but if your partner has had other partners, you are at risk.
Further, many women have gotten Pap tests regularly only to have one test come back abnormal, have further biopsies and discover they have cancer or precancer - without multiple abnormal Paps! So you see, it is important to learn as much as you can so that you can make the best decision for your own health, because ultimately it is your body and you are the one who has to live with it. While waiting & watching is always an option, it may not be the best option considering the stage you are at. You need to talk to a doctor who is willing to discuss all of your options with you.
Keeping you in my thoughts & prayers.
You didnt over step any boundaries and she told me nothing about HPV anything i know i found out on my own, and when i ask her about it she gets almost mad at me cuz she thinks i am overly concerned. she never came out and told me either weather or not i had hpv, but then when she speaks to me, she says i do. See I dont have insurance, so going to other doctors is really hard. The whole thing is just upsetting. but thank you and you are really helping me with all if this, you haev given me more info then the doc has.
and, ash, apologies if i've overstepped any boundaries....i know that you're seeing a doctor, and i'm not a doctor. i only hope that you're getting all your questions answered and that you have a doctor truly practicing medical excellence, and that includes full disclosure of your medical health and treatment plan options. i wish you the best of health.
ash, you have a gynecologic oncologist confirming that you have CIS, carcinoma in situ, and she also recommends a watch and wait approach? has she given you an explanation of why she doesn't recommend treatment? the standard protocol for cin3 is to excise the dysplasia, and you have CIS, and they're not going to do anything? i know you want to trust your doctors, but something doesn't sound right. you have CIS, right? not CIN1? do you have a copy of your medical records? if not, maybe you need to get a copy and see what the doctors are saying, what the test reults are saying. you also seemed uncertain of your hpv status....are they not doing hpv tests while they're doing their paps and biopsies? did the second opinion doctor do a colposcopy and biopsies? did you get those results?
here's the guidelines for treatment of CIN, and even young women are to be treated for CIN3 which has been diagnosed via colposcopy and biopsy:
http://www.asccp.org/consensus.shtml
and, it doesn't sound like your doctor is doing a very good job of providing you with accurate information about hpv... most adults have hpv....and most don't even know it....because most people have nothing result from having hpv at all. and, it only takes one partner to get hpv...you don't have to have multiple partners, you don't have to have sex at an early age....those are just factors that increase the risk.
i'm sorry that you're upset and scared....if treated at an early stage, cervical cancer is curable....but it needs to be treated.....and hopefully this will be what pushes you to get another doctor.
Hello everyone, I have not been on here for along time.
I got my second opinion, and they said as of right now it looks as though the "watch and wait" is a good thing. They said they dont really think it is going to just go away like the other gyn said however, for right now its ok. I also found out i have a problem with cysts on my overies. The gyns answer, birth control. Now i was just on that for 5 year because of the pain with the endo, and the cysts. I started having chest pains and burred vision and i felt like i could never breath. The gyn then of course took my off of that because that is a bad sign. So now that she wants me back on it, i am not going to take it again. I am taking evening Prime rose oil, it helps. about the HPV, i have no idea, like i didnt have sex at a young age, i dont have multiple partners, that scares me a bit, she does indeed think thats how i got it so she is trying to tell me what i did and didnt do what i was young. If i do have it, i dont know how and i dont know what to do about it, I am scared she said that nothing comes of hpv except for cervical cancer, well i hope so because i really dont want something else sneaking up later in life, I am just so upset with all of this. But that you all for your concerns I feel so much better when I get on here and see how many people have this problem and how many of you really care.
hello, ash. i'm just following up to see how you're doing. did you see a gynecologic oncologist? what was his opinion on your health situation?
pj, aren't you concerned that your doctors either aren't informed about the cause of cervical cancer being hpv or that they aren't communicating this with you? you said that this information wasn't known 9 years ago....but it was known by some doctors, and it was known by the american cancer society, because i was being told this information by my doctors over 15 years ago and i still have my pamphlet from the american cancer society that they gave me about hpv and cervical cancer. certainly the understanding of hpv wasn't where it is today, and its being the cause of virtually all cervical cancers wasn't as definitive a fact, but the hpv and cervical cancer connection has been known for at least 15 to 20 years, and i would think that the gynecologic oncologists would certainly be the ones with the most up to date info. and of course, there was no 'hpv test' til recently, so the doctors would assume that hpv was or had been present when they saw cervical dysplasia and cervical cancer. perhaps second hand smoke is a risk factor, just as smoking is a risk factor. certainly we know that having hpv alone does not mean that a woman will develop cancer. i apologize if i'm belaboring the point....but i just don't understand how doctors who treat this disease could be so blind to its cause. is it because they're not keeping up with research studies and falling behind in their knowledge? it's scary that doctors who we trust, who we want to trust, may not be trustworthy. .....ok....getting off that pedestal......wiping off my cookie crumbs......
Ash -
Again, I hate to be alarmist, but I was told three times, by three different doctors that I didn't have HPV and that I most likely developed cervical cancer because of exposure to secondhand smoke ( a lot of it too).
Anyway, after those three doctors, I found out that I more than likely had three false-negative tests and did in fact have HPV. Which was confirmed when I had my fourth test and subsequent diagnosis with cervical cancer.
With that said, 99.7 percent of all cervical cancer is caused by HPV. Your doctor needs to keep testing. In my case, I had a LEEP/Trach and the high grade tumor/lesion was cut out and removed all the HPV infection. If there was anything left, my body cleared it.
So, have your doctor test again at your next appointment. It is important to keep testing for HPV.
I have been cancer free and HPV free for 9 years now, but I still get tested to be sure isn't hanging out and dormant in my body. My doctor indicated that I probably cleared the infection, but it is better safe than sorry.
PJ
Hello Ash! I'm so glad you found this web-site and am very sorry that you are going through this. That being said, I is my understanding that "In-situ" means that cancerous cells are confined to a certain layer of the tissue and have not spread yet. However, this group of nasty cells should be removed with either a leep procedure or a cone biopsy. I certainly don't feel like you should wait until it gets worse. You need to seek the opinion of an ob-gyn oncologist ASAP. I don't want to frighten you but you have to be pro-active right now. I just don't think that there is time to see if an already progressing lesion will get worse. To my knowlege, they don't just clear up on there own. I've never heard of that, and I've done a boatload of research since I was diagnosed with 1 B1 adenocarcioma last month. When I was diagnosed, my origingal pap results showed adenocarcinoma "in-situ" I'm worried for you and think you should see an ob-gyn ASAP. Please don't wait! We care about you!
oh my god, this is stiffling to me. it so has to be addressed. is it then true that only oncology gynocologists have this knowledge, no, no, no, i'm hopeful that most gyns know what the facts are when it come to female health. ARE WE AT this web site more informed that our gyn's. o'boy i must digest this til tomorrow. pardon my sarcasm but really,
what do we expect those poor gyn drs. to deal with, newborn happy babies, yes of course, thats why they joined, not for cancer, thats for the oncologists, but when an oncologist is called, that call is usually for when HPV has ruled court over the patients life. HELLO .... to just gyn/obg drs........... if you only educate then perhaps us women won't need gyn/onc.
i wanted to be a veterinarian at 16, until my local vet said sure come in today...... the dog hit by the car..... he said "could you calm that dog" oh no???? i know you really just wanna get paid to cuddle puppies. and i smiled sheepishly and left,......... as all the other young girls had before me.
for the ob/gyn's we are not the babies to be cuddled we are the dogs hit by the car.
i'll address this mor tomorrow. thanks
so true, ariel. and from what some women have reported, some doctors have told them that 'their' cervical cancer wasn't caused by hpv, even though it was squamous or adenocarcinoma....and ALL of those two types of cervical cancers are caused by hpv. yep, very scary that these doctors have not kept themselves current with their medical knowledge and continue to practice medicine. and, it's not like this information is cutting edge...it's been known for many many years.
kingsley, what i find with your experience just amazes me that your gyn was baffled that you didn't show positive for hpv when your cancer was diagnosed. that means she/he, is so ignorant of any knowlege of hpv, that he/she doesn't know hpv can be active or dormant. scarey that doctors like that are allowed to practice with such lack of knowing the full circle of cervical cancer. that makes me think that any gyn should be given an hpv pop test. to see if they know all about hpv. these are the only people who are teaching (or not teaching) their patients about this disease. wow
Hi Ash,
I'm sorry you're dealing with this. I went through Stage 1b2 CC in 2006. When I was diagnosed, my gyn said there was no trace of HPV. She said she was baffled - no HPV, I'm not a smoker, I didn't have sex at an early age, my mom didn't take a miscarriage-preventative drug that was popular in the 60s-70s.
Well after I completed my treatments with a gyn/onc, I asked him about it... and he said it most probably came from HPV.
HPV can be in your system for years and years before it wreaks any havoc. And it can appear, then hide again because your immune system knocks it down. So in my case, it seems that HPV progressed to cancer, then the HPV went into hiding, so to speak, but the cancer was full-blown.
Good luck with your treatments, and take care. Gerri
Ash, I am glad to hear you are getting a second opinion. There should NOT be any waiting for CIS I. I had CIN III (A step below yours) and they treated it with a LEEP, yesterday actually. There was NO wait and see.
Also, do not be alarmed yet, Carcinoma in Situ is NOT cancer - yet. It may or may not turn into cancer, but since caught now, it needs to be treated as soon as possible.
And Flowershoplady is right, it is likely you had HPV at one point, and that's what's caused the dysplasia. But it's great news that it does not appear to be active in your body right now. that means your immune system is working.
As far as birth control pills go, a correlation has been made that women with dysplasia + have low levels of folic acid in their systems. The Birth control pill seems to deplete the folic acid in your system so be sure that you are taking at least a daily vitamin which should contain the daily recommended amount of folic acid that you need.
Good luck with everything, and if you're unsure of something your doctor tells you, keep asking questions until they give you answers in "civilian" terms. If you're still not sure, ask here, someone will answer quickly to point you in the right direction!
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