No info from Dr.

4 Posts | Page(s): 1 

No info from Dr.

by camrilyn on Wed Jun 24, 2009 12:00 AM

Quote | Reply

I have been dealing with my dysplasia for nearly 2 years now. Initially I was treated with cryo and had terrible side effects for months. After 3 normal paps, I have come back abnormal again. My problem is that I am getting no information from my doctor. I had to keep calling to get my PAP results, only to be called back by the nurse who told me I needed to schedule a colposcopy. Had that the next day, and after a week had to call to get those results. When the nurse (NOT the Dr) returned my call, she just told me that the dr wanted to do a LEEP now and did I know what that was. Well, of course I do. I have read just about every possible article available, but she just scheduled the LEEP. No further information about what any of my tests have said. I called about getting copies of my files and they will charge $1.25 per page! And after 2 years of exams and lab work, there are going to be a lot of pages.

I dont really want to start all over with another dr, but I feel very uncomfortable with the lack of information I am getting. I am thinking of making an appointment just to talk to the dr about everything, but I dont know if I should just get my file and go. I am just so frusterated that the dysplasia is back. I had such a bad experience with the cryo I cant imagine what it will be like after the LEEP. UUUGGG!

RE: No info from Dr.

by RedSoxFan on Wed Jun 24, 2009 12:00 AM

Quote | Reply

Hi there,

I truly think you need another doctor.  You need to be 100% on board with the practice and anticipate a long term association.  I am not 100% sure on mine, but close.  Your story sounds like you should move to another practice.  The $1.25 a page (even 100 pages would be $125) is well worth your long term peace of mind and comfort.  Maybe go to an appt with a new one, get a good feeling and then request them. 

Good luck in your decision...

Cindy

RE: No info from Dr.

by herenow on Thu Jun 25, 2009 12:00 AM

Quote | Reply

Fire your doctor, immediately! Your doctor is required to educate you, before you sign any paperwork. Do not under any circumstances return to this doctor! Call your PCP and get a referral to somebody else, today.

The money you will have to pay for the file will be worth it. When I paid to get a copy of what was in my file, it validated why I fired my doctor because my case was badly mishandled.

When you get your new doctor, please do the following.

1. Look at your lab reports and the doctor's notes so that you can following what has been happening, all along. They're a lot easier to understand than women realize.

2. Get a full description of what you have, where it's located, how extensive it is, how many cervical quadrants are involved, (Think of the cervix as divided into fourths.) if you have dysplasia in the endocervical canal, and if you have dysplasia in the endocervical glands. This will tell you if you actually need surgery, and if so, which one is appropriate.

3. If you require surgery, get an in-depth discussion of the risks, benefits, and future complications of all your treatment options - cryosurgery, laser, LEEP, and cold knife cone biopsy - before a recommendation. This is a regulatory requirement. Keep in mind the ACOG wants doctors to be conservative about managing CIN I and II in very young women.

4. After a recommendation, find out how experienced the doctor is with that surgical option, how often the doctor does that surgery, per week, how much the doctor charges to do it, how often the doctor recommends the other surgerical options, and how often the doctor refers a woman to another doctor who is more experienced with a surgical option a woman qualifies for. This will tell you if your doctor actually wants to do what is best for you or if he or she just wants to make money.

5. If you have any allergies to metal or chemicals, please tell the doctor what they are. I did not know LEEP involved a piece of hot metal, and I have bad metal allergies. My body's reaction was not good.

6. If you require surgery, be honest with the doctor about your pain tolerance and anxiety level. The doctor needs to work with you and give you a sedative if you are frightened or even do the patient while you are under general anesthesia. But you must disclose any health issues you may have. Never trust a doctor who says something is "no big deal." Your doctor is not having surgery done to him or her, and I would be interested to know what the doctor would do if he or she needed surgery done to his or her body.

7. This may be harder to find, but demand an HPV-DNA test. Roche has a good one, called AMPLICOR. Your insurance may not want to pay for it, so you may have to. Or the doctor isn't allowed to have it, or may not be allowed to offer it unless you ask, or you may have to go to a teaching hospital. But once you know which strain(s) you have, you'll know what approach you should take to protect your health.

I realize you are frustrated. But educating yourself will help you make a very informed decision. It will also force the doctor to work in partnership with you rather than doing something to your body because you were coerced.

There are also women who have used alternative medicine to either clear up dysplasia or have used it in conjunction with traditional surgery. The links have been changed, so I can contact them to post what they did, again. There is also a yahoo group called cervical_dysplasia. The monitor set it up for women to inform each other of the many choices.

You might also want to check www.clinicaltrials.gov to see what is being tested. There are always risks involved, so you must go over them carefully and be honest when you are being screened. But therapeutic medication is proving successful in clinical trials, and women need to know about this so that they can demand it.

Whatever you choose to do, please make sure it is informed. At the most, it will save your life. At the least, it will save the quality of your life.

RE: No info from Dr.

by panchita on Thu Jun 25, 2009 12:00 AM

Quote | Reply
Which one is worse: staying with the current doctor (good for almost nothing ...) or starting with a new one? You need to be treated with dignity, respect, compassion, and lots, lots of information. If your doctor cannot give you that, have him/her move over and clear the way because there are other things (your health) to take care of right now. Really. Schedule an appointment with another professional, get your files ASAP, and get quality of life, whatever the diagnosis is. You deserve good treatment, and a good life!
4 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

CancerCompass Poll

How often do you use a mobile device (e.g., iPhone, Blackberry, etc.) to access the internet?

We care about your feedback. Let us know how we can improve your CancerCompass experience.