Misdiagnosis, Anyone??

Hello, all! I am new to the site and have joined for probably the same reasons as all of the rest of you; to seek the support, advice and personal views of others who are going through or have already been through this sort of thing.

My Story

I am a 42 year old mother of three; 19, 16 & 3 years of age. Approximately four years ago, I received my first abnormal pap smear result, but by the time I found out , I was already pregnant with my third child. My doctor never retested or gave me a biopsy. He said that it was "Mild Dysplasia" and was nothing to be alarmed about. The plan was to retest after the baby was born and go from there. I ended up losing my job as a result of pregnancy discrimination and since I could not afford COBRA, I also lost my health insurance. I was unemployed for two years and then had to wait another 15 months before being eligible for medical benefits through my new company.

On May 18, 2009, I finally went in for another papsmear. The results: ASCUS. The following week, I was asked to come in for a copolscopy and biopsy, which leads me to where I am today.

My doctor called me last Thursday with the results: Severe Dysplasia CIN III. First, just let me say that I've been seeing the same OB/GYN doctor for the past 18 years of my life and in this time, I don't believe he has ever once personally called me on the telephone. This, in itself, scared me to death. The good news was that I didn't have cancer, but he explained to me that my condition was much more advanced than what he had originally thought and recommended that I come in for the LEEP procedure next week.

Of course, the first thing I did was to get on the internet and began Googling LEEP & CIN III. From what I have been able to gather CIN III & CIS are considered by the medical profession and the National Cancer Institute to be one in the same. Having said this, I had purchased a supplemental cancer policy for the entire family several years ago and took it out to read. According to my cancer policy, CIS is stage 0 cancer and is covered under my policy. I'm still not quite sure if this is good news or bad news.??

For the past couple of years, I've been experiencing a whole host of symptoms that I never would have even attributed to this, since I was originally told by my doctor that it was nothing to be alarmed about. Now, I'm not so sure. I've been having a lot of discomfort in my la la, bladder discomfort, shooting pains in my abdomen, la la and rectum, cramps, spotting, constipation and a very swollen abdomen that looks as though I'm 5 months pregnant. My butt, legs, chest, collar bone area and my face (around the jaw line), all hurt. I'm tired all of the time and very weak, as well. Now I'm terrified!!

I told my doc about all of these other symptoms and he's going to run some more tests. In the meantime, my fear is that they've missed something. I was wondering if anyone on here has ever been misdiagnosed or gone under the radar undetected.

I would love to hear your stories. Thanks so much for listening!!

By Bymyside247
Posted June 14, 2009 at 1:52 am
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Let me first say that I am sorry that you are experiencing such a fearful time...ik! Secondly...I don't know what your doc was thinking to not have done a biopsy in the first place. Biopsies are done during pregnancy as well. I had one and didn't feel a darn thing. To have had an abnormal pap and not follow up on it...that was irresponsible of your doc...in MY opinion. He cannot tell what dysplasia that you have by a pap smear if I am correct. He can tell if the changes to your cervical cells is big or small, but he cannot be definite about what stage of dysplasia you really have without first biopsying. (Please know that this is my experience and personal knowledge-it may not be 100% fact; I am confident though that this is the case...SOMEONE CORRECT ME IF I AM WRONG PLEEEEASE!) When it comes to changes in a woman's cervical cells a biopsy is pertinent to confirm A LOT!

About your symptoms...yuk! So many things can cause the symptoms that you are having. Hemmies or fissures can be causing your anal pain, a bladder infection can be causing your bladder pain, & cysts can be the cause of your abdominal pain; the list could go on and on. I mean, endometriosis can be the cause of your abdominal, rectal, vaginal, and cramping issues. Endo can get very, very painful. It can cause bowel obstructions, it can grow in your bum and even into the vagina. So your options are many when it comes to what could be causing your pains. When is your doctor getting your tests? These should be done STAT, not something dealt with lightly. If you get too frightened or concerned you could always go to the ER, they have no issues doing CT scans and x-rays. Just tell them you are having severe abdominal cramping and pains and you bladder has been paining you. Yes, this is a desperate option...but it is an option :o)

Will you PLEASE be sure to keep us updated? In the meantime, be sure to eat right, don't smoke, and just lead an all around healthy life. Take prenatals, they are good for you whether pregnant or not and right now your body needs some help.

I will keep you in my prayers okay. Feel free to add me as a friend and email me any time :o)

By Dragonfly23
Posted June 14, 2009 at 10:23 am
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The degree of dysplasia is exactly what the Pap smear DOES determine! The results can range from negative to HGSIL (high grade squamous intraepithelial neoplasia). If your original Pap came back showing mild dysplasia I don't know that he should have been concerned since the majority of mild dysplasias will regress on their own.

What concerns me more is your story about him being your doc for 18 years yet during this time of unemployment etc you never went to him and asked for treatment explaining your situation and asking him to waive the bill or give you a $2 a month payment plan and thus allowed from what I gather 2 to 3 years in between these exams. Not to mention the fact that there are always free clinics such as Planned Parenthood.

Yes CIN3 or in situ is the same as cancer staging 0 (non-invasive). And the good news is that this policy you had taken out certainly should cover your expenses relating to this and any other procedures you may have to have. I would contact your old company or whomever you purchased the policy from and get your questions answered. i'd suggest writing questions down before you call. Make sure you register a claim with them so they can begin accumulating your medical information. Some policies will actually pay youj a cash benefit for other things like rent etc if you are unable to work as a result of your situation. I'd certainly jump on that first thing Monday as there may be some clause between time of diagnosis and notifying them which may exclude you so please do not wait any longer.

Has anyone done an HPV test? Could you have gential warts in the vagina? (which could account for some of your symtoms, certainly not all those you mentioned though) HPV lesions can occur anywhere, not just the cervix, and a complete colposcopy including the vagina, vulva and anal area definitely should be performed

There has been some correlation between those having CIN lesions and also developing AIN lesions so the doc needs to include that area in the colpo and actually do an anal pap for HPV.

Sorry that you've ended up in this situation. Hopefully you can proceed with knowledge and not let things go as you move foreward. You are your best and often only advocate so you need to stay on top of your medical care!

By Bymyside247
Posted June 14, 2009 at 12:03 pm
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DRAGONFLY: Thank you for the correction. HOW R U DOING??!! And PEPSICOLAROCK: I apologize for misleading. I have just begun my deeper knowledge in the area of HPV and all the troubles it can create. Dragonfly brings up a good point; the pain in the vaginal area could be lesions so it is important to get a thorough exam. While I know some things...I surely do not know it all. I do know that the "what if" game does no one a bit of good, so try your best to hold your head up high, and like Dragonfly said, be a strong advocate for yourself. If that is hard for you then take someone who isn't afraid to speak up. This is a must! Ask for your pap results, colp results, and all that stuff and start a medical folder for yourself. In the meantime, I have posted a link below; check it out.

http://www.gynalternatives.com/cervical.htm

Dragonfly has been through a lot with this stuff so listen to her words of wisdom :o)

Most sincerely.
Bymyside247

By Dragonfly23
Posted June 14, 2009 at 2:14 pm
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bymyside - I do not wish to "hijack" pepsicolarocks discussion thread so you can refer to my discussion thread by using Duke as the search word for updates on my own status.

PCR, I just wanted to add regarding your question about misdiagnosis. I was initially misdiagnosed as having vaginal cancer as the gyn mislabeled my pathology slides. Turned out I had vulvar dysplasia (VIN2). If I'd listened to the first guy I would have ended up with a hysterectomy and not had my dear daughter right now.

More recently (since last July) I have been telling 3 surgeons that I have an anal lesion and all three said it looked normal to them. (Long story short I had invasive anal cancer in 1991 with resection, chemo and radiation, also had HPV CIN3, Vain2, and VIN2/3 in addition to AIN3) Only because of my insistence did they biopsy this area and find I had squamous cell carcinoma in situ. I just returned from Duke Cancer Ctr in NC for surgery which no one here in Florida even offered as an option. I am currently awaiting pathology results and will hopefully find out tomorrow. I have learned over the past 20 plus years and I MUST be pushy and I must be assertive with these doctors because frankly, I know more than they do about HPV (gee that's comforting isn't it? - not).

By pepsicolarocks
Posted June 14, 2009 at 4:31 pm
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Thank you for your replies, Dragonfly & Bymyside! Dragonfly, I do test positive for HPV, but according to my doc, not the strain that causes genital warts. From what I understand, doctors don't specifically test for every strain of the virus, since there are so many, but I'm assuming the strain that causes warts is one of the ones that they are specifically looking for, since he said I don't have it. Yes, it would appear that most doctors knowledge of HPV is extremely limited and vague, which is very surprising to me. I think this is one of those things that will eventually be irradicated by the new vaccine, which is great for the new generation, but for those of us who already have the virus, we're pretty much SOL, since it would appear that all of the research dollars and time is being allocated toward the vaccine, as opposed to the actual treatment.

It sounds as though you have been through an awful lot!! I can only imagine what a nightmare this has been for you!! You seem very strong and determined, though, which is a very admirable quality and I wish you nothing but the best! If you don't mind my asking, how did they find the anal cancer in 1991 and was your CIN III in any way related to the anal cancer? I'm only asking, because when I got pregnant four years ago, I noticed some type of mass protruding from my rectum. Of course, I thought it was hemmorhoids and was treating it as such. I never really had this looked at by a doctor, becuase I'm extremely uncomfortable with any one poking around down there. Finally, when I went to the doctor last month for my pap smear, I asked my doctor about it. He told me that I had skin tags, but he didn't look inside my rectum. I'm the one who raised the question about warts, which is when he told me that I don't test positive for that strain. I also have occasional bleeding and just know that there's something more going on down there than just skin tags! Its very embarrassing for me to try and discuss this with my doctor, though. I'm very passive when it comes to dealing with doctors and my health, even if I'm not satisfied with the answers I receive (or the lack thereof).

I go in for the LEEP procedure on the 1st. Prior to having this procedure done, I will get to consult with my doctor. I know that he's also going to take a look at my ovaries and bladder and I'll ask him about the anal pap. He hasn't performed an endocervical biopsy, either, but I'm not sure if I need one. At this point, I really don't wish to leave any of my bases uncovered. The biopsy from the LEEP should also be more revealing. My head is spinning right now and I am enormously stressed out and overwhelmed. I know that I need to try and keep a positive attitude, but sometimes, that's a lot easier said than done. I don't even think it's myself that I'm worried about, so much as it is my 3 year old daughter.

By BB33301
Posted June 15, 2009 at 11:14 am
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Hi Pepsi:

So sorry to hear about your situation. Pregnancy makes HPV grow very quickly and I am surprised that your doctor did not do biopsies during your pregnancy or immediately after given the above. I also have a 3 year old and the pregnancy triggered my HPV to grow and turn my dysplasia into Stage IV Anal Cancer.

Please make sure you get an anal smear and a coloposcope and biopsies if necessary of your vagina, vulva and anus. This is very important and if yoru doctor cant or wont do the above, find someone who will.

Please keep us posted on your fight!

Hugs,

Beth

By pepsicolarocks
Posted June 15, 2009 at 12:53 pm
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Thanks for your response, Beth! I have to admit that this anal cancer thing is really begining to frighten me, but it's good to be informed. A few days ago, I had never even heard of an anal pap smear or anal cancer. Now, I realize that my symptoms may be pointing more in that direction. Upon further research, I read that your OB/GYN doctor is supposed to give you an anal pap every year when you go in for your annual exam and regular pap (especially if you're HPV positive); that's obviously not been the case with me and now I'm very angry! I will definitely be discussing this with my doctor on the 1st when I go in for the LEEP. I see no reason why he couldn't just go in there and do a biopsy while I'm still under the anesthetic, do you?

How are you doing? From my understanding, stage IV cancer is very advanced! What finally led to your diagnosis? I'm going to visit your profile to see if I can learn more about your story. I hope you are in complete remission and make a full recovery! I will keep you in my thoughts and prayers! XOXO

By BB33301
Posted June 15, 2009 at 1:30 pm
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Hi Pepsi:

I am 25 months post treatment and doing great in spite of the late stage. I moved for my treatment to Houston for treatment at MDA. The great news is you are in Texas where the doctors are much better. Your symptoms do concern me.

I know have cervical dysplasia after 20+ years again and go for biopsies next week.

Please do not wait until you see the doctor for the LEEP. Please go to a colorectal surgeon right away.
My symptoms were: Alleged hemis(I did have some from the pregnancy but I also had a tumor),
I saw two gynecologist and they had no idea and never even suggested anything anal related in spite of my complaints: inability to go to the bathroom and when I did it was small pellet like stools, sharp pain radiating in my vaginal wall (it was coming from my anal canal thru vagina but it felt like it was a sharp pain in my vagina which was very sporadic but bent me over for a second when it happened), blood, fatigue. I also had a lot of gas and bloating. I will tell you I would have never thought I had cancer other then I did feel the tumor.

Please, please don't wait to go to the gynecologist. Again, he most likely doesn't know about Anal cancer and the symptoms. Chances are he has never seen it. It took me two gynecologists, three colorectal surgeons and one gastroenterologist and one begin biopsy.

If you need some help finding the best possible colorectal surgeon, email me.

Hugs,

Beth

By pepsicolarocks
Posted June 15, 2009 at 3:24 pm
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Thanks, Beth! I called my OB/GYN and he referred me to a colo/rectal specialist at Baylor Dallas. I think I'm going to look at Southwestern Medical University, as well, since they have some of the best specialists in the nation. I probably never would have even had this looked into if I hadn't posted on this website and now I'm very happy that I did! You are an angel and I will definitely keep you posted on my condition and the results. Good luck with your biopsies and please be sure and keep me posted on your situation, as well. I am here for you if you ever need someone to talk to! XOXO Thank you again!

By BB33301
Posted June 15, 2009 at 9:25 pm
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Thank you Pepsi. Please do let us know as soon as you go. One other data point, Anal Cancer is usually associated with HPV 16 and 18 which is not expressed as warts. Just like cervical cancer. Warts are using not high risk HPV although a wart in the anal area may in fact become or be Anal Margin cancer. Anal cancer can be both internal and external.
Make sure the do a proctosig/anoscope versus just a colonoscopy. You want the area below the dentine line closely looked at which is not the focus of a colonoscopy. In fact, my colonoscopy missed the cancer -the gastro saw the tumor and biopsies it but it came back benign. Unfortunately, he didn't have a clue and not sure how he couldn't tell a squamos cell tumor when he saw it. He showed me the photo and now after what I know about how they look, it was a perfect match....

Hope this helps.

I will let you know when I get my results back. I will probably hear back the first week of July or the following.

Beth

By jamiegirl
Posted June 15, 2009 at 10:14 pm
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pepsicola - unortuately most gynos are not trained in doing anal paps and they are afraid to venture beyond their "comfort zone". Mine never mentioned it either until I asked her and she said it makes sense that if I have it in the front, I could have it in the back too. I had to do my own research to find a doc who specialized in it. When I went back to my gyno last week for my pap, she was very interested to learn about how it went with the anal doc. She took his info so she could recommend him. I gave her the info on UCSF too and told her that they are very knowledgeable in that area . One of the gynos in her office recently went to a workshop on anal hpv and it seems like that office is moving in the right direction as far as getting updated on anal issues too.

By pepsicolarocks
Posted June 15, 2009 at 11:49 pm
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Ladies, thanks so much for your wisdom and support. As luck would have it, I was able to make an appointment with the colo/rectal specialist and am scheduled to go in tomorrow for my first visit. I was a little surprised that they were able to get me in so quickly, but it's a huge relief!

Yeah, I think that more OB/GYN doctors need to expand their practice to at least include an anal pap with our regular check ups.; it would certainly make it a lot more convenient, wouldn't it?

Beth, best of luck to you on your biopsies, I'll be rooting for you! Don't forget to let me know how it goes! XOXO

By bfly37
Posted June 16, 2009 at 12:07 am
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i had abnormal paps for around 2 years and they could not find anything. Finally I went to a GYN Oncologist and he did a Colposcopy in the office, later a Cone Biopsy which is now called LEEP and they found Stage 1 Cervical Cancer. I had a Hysterectomy. 8 yrs later i still shop positive for the HPV but thanx to dietary and natural supplements, no cancer.

By chamomile
Posted June 16, 2009 at 10:02 am
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Pepsicolarocks: I know that you've been seeing your ob/gyn for 18 years, but have you considered seeing a gynolcolgic oncologist? They are the experts in CC and severe dysplasia.

Good luck during you LEEP. Keep us posted.

By pepsicolarocks
Posted June 16, 2009 at 7:57 pm
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Chamomile,

I had never even heard of an gyno oncologist until visiting this site and even though I think its fabulous, I think I'm in it for the long haul with my doctor. Of course, if it turns out that I have cancer, I would probably seek out a doctor who is better trained in this area, but for now, I think I'm going to stay put.

The doctor I saw today was an a** hole!!

By BB33301
Posted June 17, 2009 at 9:30 am
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Hi Pepsi:

What happened on the appt? Did he do a anoscope?
A lot of the colorectal surgeons are A***-maybe it is from their job. It took me three to get my diagnosis. The first was super dismissive and only did a DRE and told me I had hemis and to live with them. The second did a DRE and said I needed surgery. The third did the anoscope, took biospies and told me same day I had cancer.

Please let me know what happened.

Beth

By BB33301
Posted June 17, 2009 at 9:37 am
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Pepsi:

One otehr comment, I do agree you should go to a gynecology oncologist if you need a LEEP. This is all they do-precancer and cancer treatments versus a normal gynecologist. Not saying you should put off the LEEP from her but I would find a good gyn onc at Baylor and make the move.

Beth

By pepsicolarocks
Posted June 17, 2009 at 1:19 pm
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Hi, Beth! Yeah, I was pretty put off by the Colo/Rectal specialist I visited yesterday. Get this, I spent almost half an hour filling out all of this stupid paperwork and he never even looked at it! He almost used latex gloves on meafter I specifically wrote that I had a "SEVERE" latex allergy. I told him that I wanted an anal pap, but I don't think he took one. He basically told me the same thing that your first doctor told you, hemmies; nothing to worry about, no visible lesions or HPV (I'm assuming he meant warts). Why do so many doctors seem to be under the influence that having HPV also means having warts?? He said that "if it made me feel any better", he could come in after my LEEP was performed and take a biopsy while I was still under sedation and that I could also opt for a colonoscopy (how generous of him). I don't know what to do, I'm so passive when it comes to this sort of thing and have a hard time standing up for myself, which is completely out of my nature in any other circumstance.

By pepsicolarocks
Posted June 17, 2009 at 3:18 pm
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Beth,

According to the doctor, he did do a an anascope, which was nothing more than inserting some small instrument into my bum (not too deep) and then blowing air up in there to take a look around. Not painful, but a little uncomfortable. He told me that from the looks of things, no biopsy was in order, but I insisted. The colonoscopy is scheduled for the 22nd, which is 9 days prior to my LEEP procedure. I don't know why he couldn't just do the biopsy during my colonoscopy, as opposed to waiting to do it when I go in for the LEEP, which I'm sure is also going to require an additional charge. Does this make any sense to you at all? It doesn't to me!!

By Bymyside247
Posted June 17, 2009 at 4:05 pm
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pepsicolarocks: I too am so unbelievably sick of the attitude some doctors run around with. If they don't like their job than they need to get a different one! I too have a hard time standing up for myself in a doctor's office setting. As a psych major, I know that the doctors wearing their coats and nice cloths while we are sitting in some funky looking gown with our butts hanging out, does something to deminish our confidence. Especially when we are in a vulnerable position. Asking someone to check out our bums is not easy as is. When I am done with my psych major, I intend on going to college to become a doctor. let me tell you, I am going to remember everything I have been through and everything you ladies have gone through, and I look forward to being a comfort to people. The healthcare system can wear on you huh? I am really sorry that you had to deal with the incompassion of someone who is supposed to care about your well being.

Many happy days to you :o)

p.s. I didn't proof read today ladies, so if it's hard to make out what I was trying to say, sry... :o)

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