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new here...just diagnosed-endometrial cancer new here...just diagnosed-endometrial cancer

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  #1  
Unread 02-08-2004, 08:58 AM
new here...just diagnosed-endometrial cancer

I'm probably still in shock, but I am having a hard time grasping "dreaded" nature of this. I guess I don't know much yet--or don't know what I don't know. I have no pain, no real symtoms--not sick. I had my usual annual pap which showed no signs of malignancy...but I'm 55 and I had endometrial cells show up in the pap....menopausal, so they shouldn't be there. Didn't think much about it because I still have about 2 "periods" a year. My OB-Gyn wanted an endo biopsy anyway, so, OK. The biopsy showed I have Endometrioid Adenocarcinoma Grade 1. I am going to have a total abdominal hysterectomy with ovaries, tubes, everything going. I have a consult with an GYN oncologist on Tues, and then my surgery will be scheduled. They will check out my pelvis very thoroughly and will take out several lymph nodes in my pelvis and along the aortic branches to my legs. I had a CT scan Friday but no results yet.

I have no idea what stage I have. I guess that will be decided after my surgery. I'm told that this is very early and that the hysterectomy will probably take care of it all. Probably no radiation or chemo. (Is that what they tell everybody and then "spring" the ugly stuff on you later?)

I mean, I feel like I have every reason to be optimistic, but still I feel like I am waiting for the other shoe to drop. Am I headed for a fall?

I am fairly recently divorced after 27 years of marriage. My kids are grown (26, 25, & 20) and only one is still in College. I have told my kids, but not really many of my friends and relatives. My kids are freaking out and I feel like I have to keep reassuring everybody I talk to about this that I am going to be just fine.

I confess, my darkest fear here is that this will turn out just fine, but that what this really means is that I have damaged DNA and that I will spend the future battling one form of cancer after another!

Can anyone relate?
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  #2  
Unread 02-08-2004, 09:29 AM
new here...just diagnosed-endometrial cancer

Dear Sparkle
Six months ago, I was in your shoes! The hardest part is the waiting, but it sounds like you've got doctors who will take good care of you. Grade 1 is good news (I know, I know...how can I say good news...but it truly is).

You will find so much support at this site. Many ladies here have gone through what you're going through right now.

Sincerely,
Susanne

p.s. Fast-forward six months... and I feel great!
  #3  
Unread 02-08-2004, 10:05 AM
new here...just diagnosed-endometrial cancer

Dear Sparkle, I just wanted to touch base and let you know that, first, you're in my thoughts and prayers and next, you've come to the right place! The women here are awesome and so supportive.

You sound like you're doing everything you can. Consulting with the gyn onc surgeon is "right on". They're the pros in this area.

And they'll all tell you (and it's all true!) that they really won't know for certain what's going on until they get in and actually do the surgery. In my case, my doctor was ordering a lot of tests. I questioned why she was going through so much testing before the surgery since they'd have all their answers anyway after the surgery?! She explained that the more they do know going in, the less chance that they'll be surprised with once they're in there. Made sense to me.

Anyway, I'm about 10 months out from my surgery during which they found cancer in my ovaries (which spread to the Fallopian tubes) and in the uterus (which spread to the cervix). I had both chemo and radiation therapies (at the same time). I finished up in mid-September with my last chemo and today, I feel great.

Keep posting and let us know how you're doing. We're here for you.

Good luck and God bless.
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  #4  
Unread 02-08-2004, 10:49 AM
new here...just diagnosed-endometrial cancer

Hi, Sparkle,

Welcome! In April, I will celebrate the five-year anniversary of my endometrial cancer diagnosis. It does sound like you've got your ducks pretty well in order. I would strongly recommend that you have the gyn-onc perform your surgery. They are the experts in gynecologic cancers. My gyn-onc performed my surgery, and he ended up having to do a radical hysterectomy based on what he saw at the time of the operation. No one anticipated this before my surgery--not my regular gyn, my gyn-onc, or the other gyn-onc I had a consult with at Johns Hopkins.

My gyn-onc also took pelvic washings, my ovaries, tubes, 30 lymph nodes, tissue surrounding the lymph nodes (my gyn-onc said certain of the nodes looked palpably enlarged when he examined them during surgery, so he removed them along with a surrounding block of tissue). The nodes turned out not to be cancerous, but my gyn-onc made sure everything that needed to be removed was taken out and sent to pathology for review. I did end up needing internal and external radiation after surgery because of a number of risk factors for recurrence, but I believe that having my gyn-onc perform the surgery is the main reason that I am enjoying such great health today and have very minimal long-term treatment side effects.

My life today is light years above my pre-cancer life (which was a pretty darn good one too!) Hang in there, the initial shock of a cancer diagnosis and the period before treatment are truly the worst parts of the entire process. Given the choice, I would definitely not go back to BC (before cancer) as I'm having too much fun now!

Good luck and please drop by with any questions.

Best regards.

MoeKay
  #5  
Unread 02-08-2004, 11:25 AM
Thanks

To Susanne, Maureenie, and MoeKay

Thanks so much for answering. I feel like such a novice.

I have been trying to do some research on the GYN-Oncologist I have an appointment with. He is apparently new to the area and I know nothing about him. I'm getting disturbed because I can't find out anything about him. Seems like this is a bad sign.

I'm frustrated because it is the weekend and I can't call my obgyn to ask some questions.

I live in the St. Louis Metropolitan area and could easily go to Barnes (Wash U Med School) or St. Louis U Med Center--or St. John's Mercy. All are nationally known cancer centers. Would that be an overreaction to a Grade 1 Endo-Adenocarcinoma?

Any advice?
  #6  
Unread 02-08-2004, 12:11 PM
new here...just diagnosed-endometrial cancer

Sparkle,

I would suggest that you go where you feel most comfortable. You will need to go back for a post-surgical checkup shortly after surgery, and then will need to be followed on a fairly regular basis for the first couple of years. My schedule was every three months for the first year and every four months for the second and third years. Now it's every six months.

I don't think you can over-react insofar as attempting to get the best treatment possible for cancer, as a cancer diagnosis is never something to be taken lightly. You want to get the best treatment you can the first time around, so that you are assured of an optimal long-term outcome. There are also many times that a preliminary grade of a cancer from biopsy is upgraded after the final pathology results come in. My endobiopsy stated that my cancer was "well to moderately well differentiated," which was a grade 1 to grade 2. The final pathology came in at grade 2.

My only suggestion regarding major cancer centers is that they have both more and less experienced surgeons on staff. (I always say that the gyn-onc is performing the surgery, not the cancer center itself). I would recommend that you make sure that the gyn-onc who will be doing the actual surgery is board certified in gynecologic oncology and has a significant number of years experience in addition to being well-regarded by the community and his peers.

For example, I was advised that my gyn-onc was the one that other doctors referred their mothers, daughters and wives to for treatment of gynecologic malignancies and pre-malignant conditions. At the time, he had approximately 25 years experience, was board certified in gynecologic oncology, and was listed in a number of Best Doctors publications.

Take care,

MoeKay
  #7  
Unread 02-08-2004, 12:19 PM
new here...just diagnosed-endometrial cancer

Sparkle - I would make a list of questions for your GYN today and call in the morning...what can she tell you about this doctor? Why were you referred to him? Then make another list of questions for the gyn/onc. Everything is moving very fast right now, but it's not out of the question to request a second opinion after you have your appointment on Tuesday. Just see how things go - My surgeon had no bedside manner, but she's a fine surgeon and was very direct in answering my questions. I found it helpful to bring someone with me to my appointments. Another set of ears. I also took lots of notes so that I could refer back to them.

Hope this helps ~
  #8  
Unread 02-08-2004, 12:20 PM
new here...just diagnosed-endometrial cancer

Hey Sparkle:

I am an RN in an OB/GYN's office. Sound like your cancer has been caught early. That is why women should get annual paps.

Yes the worst part is just waiting. Definately have your surgery done by a GYN oncologist. Make sure it is someone who can answer your questions, validate your concerns, not rush you, and answers all your questions thoroughly.

I do not think it is jumping the gun at all to go to a special cancer center. Right now, what is important is you are comfortable in what you decide. I would probably go to the doctor that my employer recommends because she actually did residency with him. However, if I did not have that info, I would go to a specialist center.

Hope this helps. I will pray for you. If you can just try to relax through this waiting period. Stay busy. Stay optomistic. It really sounds like you will come through this great.
  #9  
Unread 02-08-2004, 12:36 PM
Good point, MoeKay!

My Surgeon was the one the other docs would send their loved ones to. I found that very comforting.

I can totally empathize with you Sparkle - I only had 7 days from diagnosis to surgery - but that 7 days seemed like weeks!

Keep in touch!
  #10  
Unread 02-08-2004, 12:41 PM
new here...just diagnosed-endometrial cancer

Sparkle, one thing I wanted to mention but forgot in my last post. You can do some preliminary research on the gyn-onc by checking him out on the AMA's website, www.ama-assn.org. After accessing the site, you will need to go to "Doctor Finder" and then go to the option to find a doctor by name and put in his name and state.

At least you will get some basic information on where he went to medical school, where he did his residency and any fellowships, etc. It will also list all of his board certifications.

MoeKay
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