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new cancer diagnosis new cancer diagnosis

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  #1  
Unread 11-07-2005, 07:25 AM
new cancer diagnosis

I am six days after tah -- kept one ovary. The surgeon informed my family that there was NO cancer. They all breathed deeply. The surgeon was more in a big to-do about the terrible adhesions all over my abdomen tying together uterus, one ovary, bladder, colon, and abdominal wall. According to him, this was the source of the daily excruciating pain I've experienced over the last year. Two days later, though, the surgeon called to say that the path report showed stage 1b or c endometrial cancer. Wow, this is some news! It's very strange to find out I had cancer, but now, theoretically, it's gone. Didn't show up on the pap, wasn't visible to the naked eye of the gyn/onc, didn't show on the ct scan -- now what? How do I know for sure it really isn't anywhere else?
How come doctors always talk about me like they know what's going on when they don't? Seriously, it's been happening all my life. Imagine this scene -- I was sixteen years old and I went to see the gynecologist who had examined me many times. I told him I thought I had two uteruses. He said, and I quote, "now, now, little girl, what would make you think a thing like that?" Imagine his deep state of embarrassment after the examination when he had to tell me I WAS RIGHT.
Now, flash forward a few years to my first pregnancy. At 31 weeks or so I told the dr I was having terrible pain. He said, "lower back pain is common in late pregnancy." I tried to tell him NO, that's not what I'm talking about, but he didn't listen. 3 weeks later I went into labor (at 34 weeks, poor baby)and both my cervixes started to dilate. A knee presenting at one and a foot at the other proved that the inner structure of my uterus/uteri had ruptured. Yes, the pain from ruptured uterus is not the typical back pain of late pregnancy. That doctor was so embarrassed he told me to forget about all the money I still owed him, and, by the way, could he please write me up for a medical journal.
After all this I have ZERO faith in doctors and avoid them like the plague for 25 years or so until this pain started and I also almost bled to death. ****, time to go back to the doctor. Then I get this guy who thinks he knows everything and when I try to tell him I'm very unusual he doesn't listen. You know there's a saying in medicine "don't look for zebras when you hear horse's hooves," but, sadly, I am a zebra and they should listen to me when I tell them that.
Now I'm supposed to go to a treating oncologist and trust that they will understand my zebraishness? My sensitivities, my phobias, my head to toe (all internal) birth defects? How do I find someone to a. trust, b. listen, c. understand my anatomy, and d. be on my insurance. Yikes.
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  #2  
Unread 11-07-2005, 08:37 AM
new cancer diagnosis

Actually, a gyn/oncologist might unerstand it better than the others. They are the experts in pelvic problems and gyn cancers. When you get that appointment, make sure you have written down your questions and take someone with you. It helps to have a second pair of ears in that session. I also think these doctors are so use to having women come to them when no other doctor would listen to them. Having your history with you (maybe even original reports) will help.

I am so sorry for your diagnosis and pray that you get the help you need.

s
Jane
  #3  
Unread 11-07-2005, 08:59 AM
So sorry about your diagnosis

Genie: I am so sorry about your diagnosis; a cancer dx is always shocking, especially when you were initially told everything is ok. There are many women who have really no signs of endo cancer, and even their doctors are shocked by the diagnosis. Please go see a gyn/onc as soon as possible. Your surgery was not done with the usual protocol for staging your cancer and the gyn/onc will be able to advise you about the next step. Usually at early stage endo. cancer, which it sounds like you have, the only further treatment typically is close monitoring; however, you still have an ovary, which must be dealt with.
I am sorry that over the years that you have not had the best relationship with doctors, and I agree they have their arrogant moments, but they come with the territory of being human and they are the best hope we have of living long lives. At this point you have to just put your prejudices aside and get the treatment which will ensure that you are around a long time for your family, if not for yourself.
Good luck and keep us posted on your progress. ss
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  #4  
Unread 11-07-2005, 09:40 AM
new cancer diagnosis

Genie, I am so sorry for your diagnosis. I, too had an unexpected dx, that was removed completely, and I know, for me, it felt like "the cancer that wasn't". However, even though they "got it all", it still hit me really hard emotionally. Please consider requesting to see a counselor to help you deal with those emotions and your concerns regarding the care your receive from your doctors. I know it helped me tremendously.
  #5  
Unread 11-07-2005, 09:46 AM
new cancer diagnosis

You have gotten some very good advice here. A gyn/onc consult should be done and do not be afraid about telling the Dr. very briefly your past problems and that you need him to listen with the knowledge you are now skittish of doctors and understand that you could be that one unusual situation. Also remember that you are employing the doctor, and if you get one who is brusque and doesn't listen you have the right to see someone else. I also think a therapist can be helpful--I've had one 3.5 years and it is extremely helpful for me.
  #6  
Unread 11-07-2005, 03:46 PM
new cancer diagnosis

((Genie))I am sorry re the unexpected DX; it has to be shocking learning this post-surgery. It appears you have a quite early stage and the good thing is often the surgery alone is the cure. Please do have a consult with the gyn/onc, s/he can determine whether additional treatment may be necessary including whether it is OK to keep the one ovary; etc. FYI, because endometrial cancer usually "hides" in the uterus, cases may go undetected; a common symptom of this cancer in pre-menopausal women is bleeding between periods while in post-menopausal, spotting or bleeding often occurs
I agree with Margaret re briefly advising the new doctor that you are somewhat skittish of doctors in general. There are many excellent, caring doctors out there, and this comes from another who is very "cautious" of and tries to avoid doctors in general.
Please let us know how you make out with your appointment.
s, peggiesue
  #7  
Unread 11-07-2005, 04:14 PM
new cancer diagnosis

wow. s
Genie, you've been through so much that I can understand your questioning what the medics tell you. But if you see a gyn/oncologist who specializes in gynecological cancers, you should have faith in them as they are the experts in that field.

I am a doubting Thomas, for sure. If I hear something, I have to turn it inside out and research it to death before I trust it as fact. I found the perfect gyn/oncologist who I trust implicity. She doesn't mind answering the same question 5 times til I understand what she's saying, and if I dont' quite feel as strongly about something as she does, she tells me where to find the information to see it for myself. I wish everyone could find a doctor like that! I hope you find a doctor that you can trust, because this is just too important to be doubting that they know what they are doing. Please go for another opinion with a gyn/oncologist.

Good luck, please keep us posted.
xoxo
k9
  #8  
Unread 11-07-2005, 06:54 PM
new cancer diagnosis

Geniemiami,

I am so sorry to hear about what has happened to you. I'm sure it is all a shock to you, and not being able to be heard by your doctors is very frustrating.

There are bad doctors, but there are good ones too. Unfortunately, there's a little bit of luck sometimes involved with finding the good ones. I consider myself lucky, because I won the lottery with my gyn/onc. Come what may, I know I got the best care out there. But it took a lot of looking to find him, and along the way I met one or two that I absolutely did not care for.

It's important as a patient to feel that you are heard, and that there is trust in a relationship. I think doctors should be a patient at least once to see what it is like. Now I don't wish harm on anyone, but you don't really understand what it's like until you experience it.

Don't let your previous bad experiences though influence your treatment. Please make sure that you find someone that you are comfortable with and can come to trust over time. This is important because you will need to follow-up with this physician for the next few years very closely. So I encourage you to get at least a couple different opinions, and maybe even see if a large medical center in your area has a local support group for women with cancer so that you may learn from others who have gone through this who's who among docs, or maybe asking other women/family that may know someone.

So I encourage you to 1) educate yourself as much as possible about your disease and 2) be proactive.

The field of medicine has it's imperfections, and with uterine cancer all the CT scanners and CA-125 tests in the world may not diagnose it accurately. There are a lot of things in medicine that are not so cut and dry... just like some things in life. I appreciate that there is a lot that we don't know, but certainly being in the hands of someone compotent and caring enough will help you navigate through this crazy system we have! I often wonder how one day diagnosing and curing cancer will be so simple and what we have gone through today will sound so cruel!

So please try to be patient a little while longer, and hopefully you will encounter someone compotent who listens and cares.

All the best to you.
-millie
  #9  
Unread 11-08-2005, 01:20 PM
new cancer diagnosis

Genie,

Like you, I had recent surgery (TAH/BSO) and only found out afterwards that I had endometrial cancer. It had been missed on the biopsies, pap smears, colposcopy, etc. I had enough other problems to explain my symptoms, but like you have felt sometimes, I believed shortly before my surgery that I might have something even more sinister going on inside me.

I have already seen a great Gyn/Onc that answered many, many questions. In my case I will be needing external radiation due to the type and grade of cancer (grade 2 to 3) and that it was already in my lymphatic vessels.

Even though my OB/Gyn missed the cancer, I felt he was an excellent and caring surgeon, so I accepted his referral to my new Gyn/Onc, who seems wonderful. I would try to get an opinion from a trusted OB/Gyn, someone in the Oncology field, or from a cancer center.

Also, be sure to get a copy of the pathology report and the surgeon's report from your hospital or doctor if you don't have it already. The surgeon's report reassured me that my surgeon did a great job (he checked my other organs and lymph nodes for abnormalities after he cut open my uterus) and the pathology report enabled me to do research on my particular situation so that I was well-prepared with a lot of questions for the Gyn/Onc when I saw him. I also learned that the protocol for my particular situation was pelvic radiation, so I was prepared when the Gyn/Onc recommended that. If you are lucky, your cancer may be early enough and non-aggressive so that you only need further monitoring. However, the radiation doesn't scare me, since I count my blessings I didn't delay the surgery any longer and I truly feel the worst is over.

Good luck and please keep us posted,

Louise
  #10  
Unread 11-08-2005, 03:56 PM
new cancer diagnosis

Thanks, all, for your kind replies. My surgeon is a gyn/onc since in the week before surgery I had a slightly elevated CA 125 and a suspicious ct scan. Those things led to immediate emergency surgery (with just a little hurricane in between to create delays and messes), but the dr came out of surgery feeling sure that there was no cancer.
He is one of those "top men in his field" kind of doctors that other doctors go to for their surgeries and he took me in right away because of a referral from another doctor/mutual friend. However, there has been a huge lack of communication. I want to know what doctor is ever going to sit down with me and explain things in detail and answer my questions. My husband says that treating oncologists are often more talkative -- I hope so!!!!!!!!
I will get all my records and hope that they shed some light on exactly what went on in surgery and what I can expect.
In the meantime, I am to see the gyn/onc again in 3 weeks to get advice on treatment and what, if any, hormones. For now, it's time for rest and recovery (from hysterectomy and hurricane).
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