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 emory1978
Posted June 25, 2009 at 3:38 pm
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Dragonfly,
My diagnosis was perianal cancer, squamous cell. Essentially, a hemmi which was not. This was in 1997. I had surgery, radiation concurrent with chemo. 5 docs missed it. Finally, found a gastro who recognized the problem and referred me to a colorectal doc. He stated it would be skin cancer if it was at a different location. The pathology was positive for HPV 16/18. After surgery, my clean margins were very small, thus the radiation and chemo.

Sorry for my ignorance, but what is ablation surgery for and what is AIN?

Thanks.

By Dragonfly23
Posted June 25, 2009 at 2:04 am
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Well I have 16, 18, 31, 33 and 35 and the more aggressive are 16, 18 and 33 but most likely 16. Just what is your diagnosis? My initial perianal cancer in 1991 was invasive but pathology after surgery showed only a very tiny area of invasion with clean margins. I had radiation and chemo anyway. This anal cancer I'm dealing with now (diagnosed 6/15) is invasive squamous cell of the anal canal unfortunately with all positive margins. Since I've already had 3000 rads of radiation I'm in for hell going through another 5000 rads plus chemo especially since that area is so damaged from prior radiation and multiple laser ablation surgeries for AIN in the interim.

By emory1978
Posted June 25, 2009 at 12:14 am
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Dragonfly,
I was dx'd with HPV as the possible cause of my Peri Anal cancer dx. They specifically mentioned HPV 16 and 18. Same for you?

Just curious.

Thanks.

By deblvsgiants
Posted June 24, 2009 at 11:27 pm
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Oh my !!! I can totally relate, with the exception of having children. I am 41, just had a leep, but I have been seeing my Doc since I was a teen, with serious period problems. She got me on BC, which now. I do Depo shots - awesome by the way, ladies! I had 3 abnormal paps in 8 years, and 2 biopsies, but she decided to do leep, and said not to be concerned. Believe me, they can tell if it's serious and would not let you wait a day! I am high risk HPV, but I still have to wait another week for results, which are going to be bogus anyway! Please don't worry...

By deblvsgiants
Posted June 24, 2009 at 11:18 pm
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Hi, I just joined. I have had 2 abnormal paps, 2 biopsies, and just had the leep last thursday. I've been taking Depo Provera for 2 and 1/2 years, since I had an unexpected miscarraige at 6 weeks. I haven't had a period for so long, but after the leep, I have had serious pain, and 3 days after, bleeding, which comes and goes. I am concerned, after hearing all of the girls on this site, problems. Do they actually find cancer from the leep cells???

By pepsicolarocks
Posted June 22, 2009 at 11:29 pm
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I had my colonoscopy today and must say that it was not nearly as bad as I had imagined. In fact, the only uncomfortable thing about it was the clear liquid diet and drinking that God awful solution in the prep kit!!

I underwent general anesthesia, which was great! I didn't wake feeling groggy and there was no pain/discomfort during or after the procedure.

The doctor found three non-bleeding sessile polyps of benign appearance, ranging from 4mm to 5mm in size, in the descending colon, all of which were removed during the procedure. I should have the biopsy reports by the end of the week, but feel very confident that they are of no great concern.

Anyone else had sessile polyps in the colon?

By BB33301
Posted June 20, 2009 at 4:43 pm
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Hi Pepsi:

He sounds just like the first two colorectal surgeons I had. They are not always known for their bedside manner. I was told I had hemis as well. I never had any warts or dysplasia as far as I know. I am glad he will do the biopsy. Not meaning to freak you out, but even if it is begnin (my first one was because the sample of tissue was not taken properly) push and see another one afterward.

I have found 2-3 opinions is not unreasonable and often is what is needed to come up with the right diagnosis.

On another note, I am a little worried about your symptoms in general. I don't know enough about cervical cancer or CIN yet to be able to tell you if you would have all those symptoms from it. My guess is no but there are a ton of really knowledgeable people on this site who could better respond.

Do you feel any swollen groin lymph nodes? The ones I would focus on are to the side of your bikini area (inguinal). What you are looking for is something that feels like a pea and is hard and doesn't move freely.

Beth

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)

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 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 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 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 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 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 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 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 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 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 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 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

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