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When to Worry? When to Worry?

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  #1  
Unread 04-13-2004, 09:56 PM
When to Worry?

I haven't been here for a long time, so I apologize if this gets too long. I had my TAH/BSO in September 2002 for cervical cancer. I have had a few complications due to surgery, but nothing major. Every three month check up goes "fine" as my DR says. My type of cervical cancer was "unusual" as it is was a FAST growing cancer as cervical cancer is usually slow growing. After my path report came back from my surgery, my DR sent it off again because she couldn't believe the results. There was just a teensy tiny spot on my cervix end (which is why it was missed on earlier paps I believe and why the other DR thought the LEEP would work) but it was very long, all the way to my uterus. So she consulted with a team of Dr's to determine if I needed radiation/chemo. They decided because I was so young (33 at the time) and so "healthy" that they would wait it out and watch closely. Because all previous GYN exams had been normal and I didn't have any problems with my period my family physician missed several signs that I had GYN problems. I was treated for "chronic sinus infections" and "severe fatigue" for TWO YEARS. Of course I refused the sinus surgery and decided to live with it so a lot of symptoms were played off to the diagnosis. I went through diet changes, lifestyle changes, vitamin b12 shots that are very painful etc. And now I feel like my GYN/ONC is ignoring signs that something else is wrong. She is a VERY respected DR. She is at the top of her field nationwide, but sometimes I feel like she groups people and symptoms into categories and no one is allowed to deviate from the norm. I have consulted with another GYN/ONC on the telephone and he basically refused to set an appt because of who my DR is. Anyway, what I am worried about now is in November I was in awful pain and went to the ER. I have a very high pain threshold, so for me to go to the ER is a major event. I refused pain meds after TAH/BSO in the hospital because they made me sick and took Regular Tylenol and Ibuprofen and was in less pain than when I went to the ER. The ER ran urine and blood test and then did a CT scan. They could not tell me what was causing my pain, but eliminated kidney stones, gallbladder, appendix, etc. But the ER DR did say he was puzzled by my white blood cell count that my Lymphocites (sp?) were extremely high. I've tried to research it, but what I've found is very vague. So, in December I tell my GYN/ONC about it, and she shrugs it off. At my last appt in March, she feels something in vaginal wall after she had done the pap/vault smear and reinserts the speculum to look and says she "thinks" it's just scar tissue, nothing to worry about. Well, why didn't she take a sample of that? She did not run bloodwork in December or March. Should I be concerned if she's not? Should I ask my family DR for a referral to another GYN/ONC? As I have not found one that will take a patient without a referral or who knows who my DR is. If you call in for a "second opinion" that is the first question they ask! Would it be considered deceptive if I have my family DR do a referral? Has anyone else experienced anything like this?
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  #2  
Unread 04-13-2004, 10:08 PM
An idea

Cindy,

It sounds like you are really in a tuff spot and deception may be your only alternative. You need to do whatever it takes to get the best care that you deserve. You may want to get a referral from your family doctor and tell the new doctor that you just moved here from out of state and the doctor you used previously has retired.

Hope this helps and good luck.
  #3  
Unread 04-13-2004, 10:19 PM
When to Worry?

It is too bad when one has to go the deception route to get another opinion but you have to do what you have to do. Even the best doctors can miss things. Get that second opinion however you have to so you can put your mind at ease. Another possibility would be to drive a couple of hours where maybe they don't know your doctor.

Jane B
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  #4  
Unread 04-13-2004, 10:49 PM
When to Worry?

Dear Cindy,
I agree. Do what you have to do to get that second opinion. It's your life and health and peace of mind that are at stake here. Take care, and I pray that all will be well for you.

Monalees
TAH/BSO for endometrial & endocervical cancer/Dec.02
  #5  
Unread 04-14-2004, 07:48 AM
When to Worry?

Your doctor is ultimately a contractor, no matter how famous or well-respected. If the guy laying brick for your front porch steps doesn't satisfy you, no matter how well-known he is, you get a new masonry contractor, because it's your porch. Same here. It's your life.

Blessings.
Marlene
  #6  
Unread 04-14-2004, 07:51 AM
When to Worry?

Cindy,

I probably was a little too sharp in my last post, but at least you need to get another opinion. You don't need this kind of worry, confusion, and upset.

Blessings.
Marlene
  #7  
Unread 04-14-2004, 09:10 AM
When to Worry?

If you feel there's something wrong, do not ignore it. Gut feelings --intuition, instinct, whatever you call it-- often turns out to be your most valuable ally. I'm sorry your doctor isn't responsive to your needs and concerns, and I'm angry that the other doctors are so in awe of her to the point that it may jeopardize your situation. Deception may get you in the door of a new doctor, but eventually the truth will come out. I'm sorry you're in such a difficult spot.

When I went for my second gyn/onc opinion, the doc never once asked who else I'd seen, even though both doctors I went to probably knew each other, and both are considered "stars" in their profession. But like you, I felt that my first doctor was not responsive to my needs and I would not thrive under his limited definition of care. I'm much happier now.....I wish a similar outcome for you.
  #8  
Unread 04-14-2004, 09:41 AM
When to Worry?

I would get another opinion or insist that she biopsy what she thought was scar tissue. You need to have peace of mind.
  #9  
Unread 04-14-2004, 01:07 PM
When to Worry?

Cindy,

If you have any symptoms or just do not feel right, you must pursue every option. Generic handling of ailments is no good. My mom during chemo was an anomaly...if something was to go wrong she experienced it. It was no fault of her competent oncologist, it was just how it went. I too had an elevated white blood count for awhile and took every test known to man, and guess what thank god all was okay, but let me tell you it was a unnerving waiting for the results. In short, you know your body and you must explore alll tests. Not just for the fear of cancer but for quality of life. Feeling bad all the time is not good and being around your age I can tell you it is a drag feeling aches or pains or fatigue. A little part is psychological I am sure but that is because I sure we worry and second guessing a doctor weighs hard on the mind too. Keep me posted on your progress and good luck.
  #10  
Unread 04-14-2004, 01:46 PM
When to Worry?

(((Cindy))) Given your feelings of doubt, symptoms you are concerned about, etc. please do whatever is needed (family doc recommendation to another gyn/onc, going out of state, etc.) to get a second opinion. It is your body and life and you need to feel more confident that your health is good now. Hopefully your gyn/onc is correct and there is really nothing to worry about, having a second doctor confirm this, possibly by further testing, etc. could give you just the reassurance you need.
BTW, have you asked you current gyn/onc why she did not run tests on the possible "scar tissue" of do blood work particularly since your tests in Dec showed a possible high white blood count? Perhaps if she discussed these matter in some depth this would give you more ease of mind. Please let us know what you decide to do. s peggiesue
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