He did not know anything about me going into our appointment. He asked why I was there and if I knew my treatment options. I said I already had surgery scheduled for the 21st. He seemed surprised by that. How did he not know that going into the appointment?
It was around this time that he apparently grew bored of me because he began looking through his phone.
I asked him if I actually had treatment options. It was my understanding my options were hysterectomy or the cancer progresses. He asked a couple questions and then tells me that there probably aren't really any other options than having the hysterectomy. Shouldn't he have known about my history going into this? I only told him a tiny bit of my history. It's very complicated and I know it was all sent to him. I feel like he shouldn't be making treatment choices based on a couple questions he asked me that don't tell the full story.
I was expecting him to talk me through the decision of whether to have my ovaries taken out too, but he just said he recommends it and there is up to a 25% chance the cancer could come back if they are left in, but it's up to me. He said this all while flipping through things on his phone. I asked about menopause and he said I won't notice it because I will be on hormone replacements. Adam asked if there were side effects to that and he said none that I would notice. None that I would notice? Plus, I thought taking estrogen put you at risk for breast cancer? Then he mentions something about going through menopause twenty years before I'm supposed to has risks like heart problems and stroke later on in life. I couldn't tell whether he was saying if I took the hormones that wouldn't happen. But, it sure did give me more to worry about. I feel like he gave me some random pieces of information rather than really talk me through the decision. He told me to let him know the day of surgery what I decide. Really?
He said he is not sure yet how he will be doing the surgery. He will try to do it the least invasive way possible and then only completely cut me open if he needs to. Which is good because if he can do it the less invasive way, the recovery time would be less. But, because he doesn't know which way he will end up doing it, he wouldn't give me any information about my recovery time or restrictions. I was so frustrated. He acted like it was annoying that we even asked.
He also refused to reassure me in any way that I will survive this surgery. He made a point to tell me people have complications from surgery all the time and he had no way of knowing if I would be one of those people. He pretty much made it seem like- well, you could die, you could live, let's just wait and see what happens.
It was my understanding from my OB/GYN that it's stage one and that after the surgery I would be cancer free. He said, "No, we don't really know what stage you are until we go in." He even said, "Since you have had problems for a long time, then things could be worse." Wow, thanks.
Not one ounce of anything reassuring or comforting. It was a ten minute appointment and he seriously played with his phone the entire time.
As he was leaving the room, I was desperate for anything to hang some hope on and I asked him if he has done this a lot. Hoping he would tell me how often he does it and how most people come out of it fine. He said, "No, I just read how to do it on the internet today." Then he walked out. I looked at Adam and said, "What the hell was that?" Adam said, "I think there might be hidden cameras and we were punked." We stood there waiting for Ashton to come running in laughing and saying it was all a joke.
I cried through the appointment. (Not that he noticed since he didn't look at me.) I continued crying the entire way to the hospital. It shouldn't have been a surprise that they had a lot of trouble getting blood from me. They asked me if I could be dehydrated. Well, I have not had anything to eat or drink all day and I have been crying for an hour straight.
The bright side of my time at the hospital was that they had a nurse go over everything about my hospital stay with me and I was able to talk to her about my surgeon and the awful appointment. She said he is not known for being a nice guy or being good with people, but that he is really good at what he does. She said people come from hours away to have him. (Although she was very disturbed about the things I told her and she said she wants to mention it to someone at the hospital.)
When I spoke with my OB/GYN nurse on the phone, she said the same thing about him. That's he is not good with people, but good at surgery.
That's when I realized, my surgeon is Dr. House.
And if Dr. Gregory House existed in real life, I would want him to be my doctor. Even if he was an ass.
So, I am going to stick with him and be grateful that I will be asleep the whole time so I don't have to spend anymore time with him.
But, my appointment with him is going to make the next week harder on me because I do not feel reassured at all that everything will be okay. I keep trying to tell myself he was just trying to cover his own ass in case something happens, but it still scares me a lot.
About halfway through reading this I was going to say that unless this guy is the at the very tip-top of the field, you should run away and get a second opinion! But it sounds like he may just be your best option, if you don't have to actually deal with him in person anymore. Focus on the people who have been helpful and reassuring and don't let the rude doctor get to you!
ReplyDeleteThat is absolutely awful! ANd there is no excuse for being good at surgury, but horrible to people. I hope the nurse does mention something to someone at the hospital. Perhaps there is also something you can do about it as well, after you are recovered and feeling better. I know here that there is a College of Physicians and Surgeons and they are the ones that take complaints against doctors.
ReplyDeleteThat is also the same exact thing people said to me about that stupid OB/GYN I saw.
I agree that since this guy is known for being the best surgeon, you should stick with him at this point--especially since you don't need to talk to him any more. But I hope that you will file some formal complaint about him once you are recovered. AND, you should send him a copy of this blog post. Because no one should have to go through what happened to you with this horrible doctor (it's a type of emotional malpractice in my opinion)and if no one speaks up, then he will continue to traumatize his patients like this. I don't care how good he is at what he does--there is no excuse for this. How can he do this for a living and choose to ignore (and it is a choice) the legitimate angst that every one of his patients is feeling. It's infuriating. But it's good to know that he is a talented surgeon and I hope that makes you feel safe about the surgery.
ReplyDeleteOncologists and surgeons in general are known for their assfoolery. Now I am going to lend you some assvice, unsolicited of course, and you are getting it at 3 am while I have a hot flash due to my own hysterectomy 4 weeks ago. But this is also coming from someone who took care of my mother thru her hysterectomy and her diagnosis and care for uterine cancer. You can delete this comment and tell me STFU at any time.
ReplyDeleteYou need a second opinion. I don't care if he is the best surgeon on the planet. This many is an asshole. He was rude and did not answer your questions correctly nor did he treat you with the respect you deserve. This is from to much experience from dealing with folks like this so I hope you will take my advice most seriously. DEMAND, yes, you got it, DEMAND - pull out your inner bitch because you pay his bills - remember he is not the boss of you, you are and you are paying him to take your uterus out - that he not be playing with his phone while speaking to you. I have found that challenging such bad mannered docks, often make them shape up. Two, don't accept flippant answers to your question. You have cancer. Their are risk factors to HRT - guess what some are CANCER. There are other ways to get hormone therapy if you don't keep your ovaries that your insurance may pay for.
Do your research! You are your own best advocate. Also get every bit of documentation on you BEFORE you have surgery. Every lab. Every scan, every report. My mother stuff just magically vanished. Another story for another time. This is your life. Advocate for it and yourself. (I know I sound bossy) If you have to reschedule your surgery a week or two to give you peace of mind - then do it. Don't rush if you don't have too. I am not sure how pressing it is to have your uterus out but one week or two for you to get the best possible results and treatment is worth it.
There are so many grammatical errors and misspelled words I am ashamed. I homeschool my kids. I just got an F.
ReplyDeleteI have a good excuse. Hot flashes, insomnia, and narcotics.
Just be glad you'll be knocked out during the surgery so you won't have to put up with him.
ReplyDeleteJust know that I think about you everyday and I'm praying for you!!
ReplyDelete-Roxanne
Well I can't help but shower you with love and adoration! You got (another) award on Busted Plumbing: http://www.bustedplumbing.com
ReplyDeleteCongrats!
PS: If I see your doctor I'm going to kidney punch him, just for you.
I know things are moving very quickly for you. Have you considered a second opinion? There are a lot of hyster. that occur that are not necessary. Just something to consider. Here is some information I have from personal experience of early menopause. HRT from what I have been told is safe for someone your age because your body would have been producing estrogen anyways up into your 40s. HRT is more risky in older women because as they go into menopause their estrogen levels should decrease, it is part of nature. However, saying that I have opted for no HRT because I have had cancer twice and I am personally not comfortable with taking HRT (some studies say it increases cancer risk but generally in older women naturally going through meno) but not doing so I am at risk for osteoporosis because I am no longer producing estrogen. To track I go for yearly bone density tests and take a nasal spray for bone protection. I am not sure how well HRT takes care of meno symptons but with out it you will experience them and the degree depends on each individual. I had lots of hot flashes and other effects but over all I feel pretty good now and I have been in full menopause for about 5 years.
ReplyDeleteHave you had a CT scan? or MRI? that could help determine what stage that cancer is in. Another test option is a PET scan, probably the best test. from what you have said it sounds early and that is great news. Usually they can give you an idea before surgery, I would demand more answers.
I was warned that my Gyn Onc had a bad bedside manner before I saw him. My first appointment he was actually really nice and listened and explained so I thought the warning was wrong - but found in other appointments that he must have been having a weird day that first day, because he is a lot like your guy it sounds like...
ReplyDeleteHe is, however, extremely well known for being an excellent surgeon, and in the end that's why I stayed with him (and from the surgical perspective I was happy w him). I've found other ways to get questions answered and things explained, however. Finding a good gyn surgeon who knows how to get all the cancer & leave your nerves in place is not so easy -- lots of women have incontinence or loss of sexual response after these surgeries, so sticking with a top surgeon has it's logic.
One thing he said that sounds right-on (even if hard to hear) is that there is NO WAY to know the stage of your cancer before surgery. The definitive answer is based on the pathology of your uterus & other organs & the only way to tell for sure is when they're removed. Any pre-surgical diagnosis is a guess based on biopsy (by definition incomplete). All the pre-op testing (CT, MRI, ultrasound, etc are to help them see and give an indication if they think things are farther along - needing abdominal surgery vs lap - but clear test readings don't mean they won't find something at the hysterecomy). I was told pre-surgery I was CAH or "at worst, stage 1A" but in fact was stage 1B in pathology (penetration into less than half the myometrium).
A responsible surgeon will tell you there are risks with surgery. It's less reassuring than hearing the fact that the risks are rare and probably won't apply to you, but with litigation fears & not wanting to be told by patients they hadn't been warned, most docs say what yours said about surgical risk. (Of course, there are better & worse ways to say it - your guy obviously choose the "worse" side).
Hang in there -- everything seems to be moving along as it should.