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Still In Shock Still In Shock

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Unread 10-21-2005, 09:58 AM
Still In Shock

On October 5, 2005 I had a total abdominal hysterectomy and bilateral salpingo-oophorectomy due to fibroids and dysfunctional uterine bleeding. I wasn't experiencing any post surgery problems, actually I felt so good I had to keep reminding myself I had just had major surgery. On October 18, 2005, I got the call that will change my life forever--the doctor needed to see my husband and me in her office as soon as possible. The post-operative biopsy of my uterus and cervix revealed cancer (histology-endometriod, grade 5-50% atypical cells, stage II/involves cervix) I had a pap smear on August 16, 2005 and a biopsy of my uterus on August 25, 2005-both were negative. My doctor was so shocked, she requested a second opinion on the results prior to notifying me. The pathology department at Duke confirmed the initial report. I'm now waiting to see a specialist at Duke to discuss my future treatment. My lymph nodes were not removed since cancer had not been diagnosed at the time of my surgery and my uterus had to be cut during removal and there's a chance of spillage of cancer cells. Has anyone had an experience such as this? If so, what am I facing.
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Unread 10-22-2005, 07:27 PM
Still In Shock

Welcome to Cancer Concerns!

I'm sorry to hear that you've been diagnosed with cancer. It must be quite a shock for you since you were not expecting to find anything and your recent PAP's had been normal. I'm so glad you found us.

I had cervical, so I can't offer much other than hugs, but I know other women will along soon to share their stories with you. I'm glad to hear you've been referred to a specialist. A gyn/onc I assume? They are the experts when it comes to female cancers, so they are a good member to have on your team.

I hope your appointment goes well and that you find exactly the right course of treatment that will rid you of any residual cancer cells!

Unread 10-22-2005, 07:37 PM
Still In Shock

I am sending prayers for you!
I am still in the diagnosis phase of what I actually have.
I pray someone come along soon for you.
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Unread 10-22-2005, 10:46 PM
Still In Shock

I can't imagine how much of a shock this has been for you, especially because the cancer had been missed in previous tests... wow. I don't have any useful experience that would help you (I had cervical cancer), I just wanted to let you know that you're in my thoughts, and I hope that you get some answers soon.
Unread 10-23-2005, 07:00 AM
I know what you are going through...

I went through almost the same experience, though I am further along now in my treatment.

My endometrial biopsy and ultrasound showed only fibroids, so my gynocologist did the operation. Mine was laproscopic; he thought everything had gone fine. I was up and around after two weeks, feeling good, and also guilty for not being at work.

Then I got the call. Endometrial and ovarian. It is very, very nerve-racking, but you can get through this. I have (but not without a lot of tears).

Now what I am going to tell you is very frank, and it isn't to scare you but to prepare you and know that someone else has done this and made it through. Since your operation may have caused "spillage," the oncologist may recommend an "exploratory" surgery. Mine was different, and much longer than yours would be, because I also had a minor bladder cancer, and they wanted to resection my ureter, at the same time they did the exploratory. While I was on the table for 7 hours, most of that was the bladder surgery. The exploratory for cancer involves, basically throwing water on your abdomen, seeing if "bubbles" arise (meaning microscopic cancer cells), scraping the cancer cells if any are there, looking at the "surrounding parts" to see if there is any cancer, and then taking lymph nodes to test. This is all so you can be staged and given the appropriate treatment plan.

I know its difficult to think of another surgery, and they may not even recommend it, but be prepared. People do get through it all.

I am now going in for my second chemo, then two months of radiation, then 4 more chemos. I have a good chance for a cure without recurrance.

Try not to read too much about cancer until you see the oncologist. I got to the point where this is the only board I could read, because I was driving myself nuts. My second surgery was almost 5 weeks from my first (only because they wanted the urologist and oncologist to operate at the same time). And those were the longest 5 weeks of my life. I feel much better now since I am being treated and feel like I'm fighting it.

I've also gone back to work as of last Wednesday (with work making concessions for my treatment), the bladder cancer is completely gone (all three of my cancers are "primary" not a spread; while rare, not unheard of in families with high incidents of cancer).

Tomorrow is my second chemo. You can survive this. Do not be afraid to ask the doctor for something to help you sleep or anti-anxiety medication. I resisted it, and could barely function. I started taking Effexor, and I was able to tackle my cancer and function during the day. It does not mean you are weak. Remember, if there is ever a time in your life when you need anti-depressants, it's when you have been told you have cancer.

You will survive. Hugs and prayers to you.
Unread 10-23-2005, 07:53 AM
Still In Shock

I am so sorry you got such a shocking DX following surgery. I am glad you are going to a specialist at Duke; it is an excellent comprehensive cancer center, with first rate doctors, and the center is considered one of the top, if not the top, in the Southeast.
Although I had endometrial cancer I am sorry I cannot provided any useful insights as treatment varies by stage and grade. I know you and your Duke doctor will develop a solid follow-up plan designed just for you.
We are here for you, so don't hesitate to come even if only to vent or for a hug, and someone seems to be here 24/7. Please let us know how things go with the specialist; I hope this session is scheduled soonest as waiting is the very pits and one usually feels better with a plan in hand. I am keeping keep you in thought and prayer.
s, peggiesue
Unread 10-24-2005, 08:54 AM
Still In Shock

Thank you all for your hugs and prayers. I'll keep you all posted.
Unread 10-24-2005, 06:54 PM
Still In Shock

So sorry for the rude surprise. I have had this type of thing happen to me twice; once with BC than with a uterine sarcoma (went to surgery for TAH because of large multiple fibroids and BSO to have ovaries removed becasue of OVCA that runs in the family) The surgery was done by my OB/GYN because not CA was expected. Post surgical pathology revealed a uterine leiomyosarcoma. Here is what I would suggest.
1. Do some research now. Make certain that you do some reading so that you feel as though you are asking as many questions as you can during your next Dr.'s visit.
2. Bring someone with you to this appointment.
3. Try to ask questions about the institution and physician that you have been referred to; it is important that you know about the qualifications/reputation of the people that will be treating you.
4. Inform your primary care doc what is going on. You should find that they will be helpful during those "in between" appointments with your cancer team.
5. Think about asking for anti-anxiety medication. You may not need anything now and you may never need it. But there is nothing worse than "test" days (CT scans or MRI scans) and all of a sudden you are overwhelmed. There are also some nights that become interminably long. Some of these meds are nice to have aorund.
6. If you have children still at home, think about how you want to talk about your diagnosis and treatment with them.
7. Be prepared to be flexible. You might find there are no pat answers to all of your questions. Know that up front. Be prepared for surprises. Know that it is okay to not like your recommended docs. You may need to consider other physicians if you are not comfortable with someones' office or bedside manor.
8. If you need it; don"t be shy about asking for help! There may come a time when you need support. Most folks want to help but have no idea how. Go ahead & ask! be specific about your needs. Most family members and friends want to be involved.

Good luck and strength to you,
Unread 10-25-2005, 09:06 AM
You are all so kind

I'm doing my homework and trying to be as knowledgeable as I can inorder to ask the right questions when I see the gyn/ono. Where are the best places to go to get information that doesn't frighten you to death. I'm really starting to consider the meds. I don't get much sleep. I do fine during the day but at night my mind races and I have two more weeks before my appointment.

Unread 10-25-2005, 10:09 AM
Still In Shock

Hi, By all means pls consider taking anti-anxiety meds especially as you still have 2 weeks before your appointment. In fact, if your feel overwhelmed, consider talking with a counselor, your doctor or local hospital can help you find one and these are the times these folks can make a difference in our lives.
There are positives and negatives of getting more informed and when we are dealing with medicine this can be even more tricky. It is important that the info is legitimate, and even sound material, when it gets too scientific/technical, can confuse and scare as can statistics, etc.
If you have not done so pls check out our resources forum re your dx, etc. The American Cancer Society has a lot of excellent information and you can find them by searching in Google. Also, each of us has to determine what amount of info works for us. If it is/begins to scare you, pls consider waiting to talk with the specialist. Vice searching, do things to pamper yourself-listen to good music, read an uplifing book, watch a funny movie, spend time with a good, understanding friend,etc.
Since your upcoming appointment will be you initial visit with a specialist, no doubt you already have many questions based on what your doctor already told you, the path report and other tests indicated, etc. You no doubt will feel better after the specialist answers your questions and most importantly when he recommends a treatment plan. With a concrete plan in hand you will be "doing" not waiting which is the very pits.
s, peggiesue

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