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View Full Version : Need some insight please!



ladybug111373
12-02-2009, 03:39 AM
I posted this on another forum, and while I had 89 ppl view it, not one person said one word.....so, I am going to post both before appt and after appt posts here in hopes of getting some type of response. Thank you in advance :)

before appt

Do I worry? Should I be mad? And what do I say to the doctor?

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Ok, I sure hope someone can give me some insight here as I have been nervous for the past week.
Let me give you the brief run down.

'98 I had a pap showing severe dysplasia. I had roughly 3 colposcopies. The initial, a retest of who knows what anymore, and then another retest while 6 months pregnant with my twins. The amount that was taken was quite small, some was better than none as my doc put it. They couldn't take the "normal amount" due to being an automatic high risk pregnancy because of twins. 2 months after their birth I had a tubal and a LEEP. All I can tell you is that she said they got everything and I would repeat a pap in 3, then 6, then 9 then yearly thereafter. Following tests came back fine so no need for me to worry. Nor had I worried up until this point because it was all foreign to me. She said it was nothing to worry about, so I didn't worry.

I will admit, after the tubal I slacked on the yearly paps. I know, shame on me since I know better, but between work, kids, and life in general....sometimes a doctors appt is hard to fit into a schedule.

'04 they were fine.

'06 I honestly can't remember, I had test done shortly before my dad had surgery and passed away, so I don't remember a few months. And I certainly didn't keep any doc appts I had arounf the time either.

'07 I relocated and never had a pap.

'08....I finally call for a pap because I am having long periods, alot of bleeding, horrible cramps...the whole 9. My pap comes back with severe dysplasia, and my doc recommends a colposcopy. In the same breathe he tells me they have to do a hysterosonography to check for polyps. The hystero was done in office, and (for me) was extremely painful. During the test a polyp was found and I was told I needed a polypectomy. We also decided an ablation would be a good idea since my tubes were tied, and bleeding was an issue. I returned to a normal room, and was asked would I like to have the colposcopy. I asked if it could be held off until the next appt or til I was in surgery because I was already in enough pain. I was told it was fine, but it needed to get done, and I said ok. 2 weeks later, I had surgery. I had since seen my doc 3-4 more times during the past year for multiple reasons including still having a period, frequent urination, pain with sex, watery discharge and still having cramps. Also, at times...some pain without a period. Never once was I told the colposcopy was not done. Is it my fault for asking to not be put in any more pain that day? And when he reviewed my chart, shouldn't he have noticed it was not done?

Nov '09 I go in for my yearly pap and discuss the frequent urination with the doc. I was told overactive bladder, watch the caffeine and we'll see you in a year. Last week a letter arrives telling me my pap shows severe dysplasia and an appt is needed immediately for colposcopy.

My colposcopy is tomorrow, and I am worried since this is not my first time with issues regarding my reproductive organs. I am quite p'ed off because the colposcopy was never done LAST year, and here I thought it was because I figured it was done during surgery.

What do I say to the doctor? Do I question him about the fact the biopsy was not done the previous year? And do I question him after the biopsy is done? Do I worry that a year has passed and nothing was done? Am I just working myself up for no reason?

I read that severe dysplasia is precancerous, can turn into cancer if left untreated, and here I sit just over a year with nothing done since results of last years pap. AND, if everything comes back where it it is still just dysplasia, do I continue to play this wait and see game? Or should I inquire about a hysterectomy?


I know I have asked a million and one questions, I am just worried....as anyone would be. I hope someone can offer me some advice because my mind is so caught up in the what ifs that I can't even think about the nows....if that makes sense?

after appt

So I went to the doc appt today. Because my letter never said what cell showed up from the pap, I immediately asked the nurse. She informed me that it came back for HSIL.

Doc found 3 spots that he biopsied as he said they show significant change.
He said depending on the pathologists findings, I will most likely undergo another LEEP.

He also informed me all this is a result of HPV 16 or 18. He is unsure which precise strain, but said he is confidant it is one of the 2. I never thought to even ask for him to find out..I mean, can he even find out the precise strain? and How?..all the questions I should have asked came after I left my appt. I have started to write them all down so I can ask him when I see him after results come in.

I questioned him about why it was never done last year, or why when going over my chart during my office visits, it was never brought up that the colpo. was never done. All he said is that I was there now, they would take care of me, and he wasn't going to let anything happen to me.

Yet....I am still very nervous :(

rockstar
12-03-2009, 08:57 PM
Hi Ladybug,

I'm sorry that no one responded to your posts in the other forum. Hopefully you will find the answers and support you need here. :) And I'm sorry I did not get a chance to reply sooner.

After reading your posts, Wow, you have experienced both troubling medical times and miscommunication from your doctors office. I cannot tell you how often it seems that stuff is lost in translation.

Okay, My first piece of advice is to take a deep breath. I know you have already had some bad footing with this doctor (as per the forgotten colp) but you are right with the best thing to do is ask. As patients we need to be involved with the treatment process and ask questions. Start keeping a notebook or journal and write down your history, the information your doctor gives you, questions that come up, everything. We do try to keep everything in our heads, but as anyone can tell you, that is wishful thinking.

When you go in for your upcoming LEEP, ask about the outcomes, when the results will be in, any questions you may ask about.

This journal that you will keep will help SO much during this time.

And to try to help ease your thoughts, Cervical cancer moves very predicatably and often very slowly. Yes, you have had paps, colps, and LEEPs in the past, but that is all part of the treatment. I would try to not start freaking out until we get some really bad news, and I think odds are in your favor. Cervical cancer is very treatable and if you are in the early stages, there is no reason to think that this is the end of the world. Again with the wishful thinking to not worry, easier said than done.

I hope this helps answers some of your questions. Feel free to PM if you like. I am always all ears.

ladybug111373
12-07-2009, 05:14 AM
Hi Rockstar!

Thank you so much for taking the time to reply to my post! I apologize for the late delay in answering, but between work and my children things can be pretty easy. Not to mention, my mother is now in the hospital because they think she has a blockage in her heart!

Do you ever feel like when it rains it pours? I feel like I am going to need to build an ark soon because I feel all I have is downpours!

I haven't been able to buy a journal as of yet, but I intend to do so tomorrow because I feel that is a great idea! I always leave sayin "crap, i forgot to ask about________"

I called my doc office on Thursday, and left a message for the nurse asking if it really takes up to 3 weeks for the results to come in because By the end of the 3 weeks, I may be bald from the stress of waiting. I left the message around 1:00p and their message clearly stated all calls would be returned if messages are left before 4:30p. Well, I am still waiting :x

Now, I do have a question that by simple searching the internet, I am unable to find the answer to. While I know cervical cancer takes years to develop, is it counted from when it was first noticed? Or is it in years without treatment? I just ask because this is going on 11 years of going through this, and I can't help but wonder. Not to mention, I have read stories where one year there is nothing and next year, bam abnormal cells that are cancer. I aslo know all the searching for answers can drive one crazy.

The what ifs are the stressors!

And last but not least....if I get bad news, would you suggest I get a second opinion because of my track record with this doctor? Or do I just go with whatever he suggests?

Thank you again so much rockstar!