New have cancer 1b with deep myomentrium envolvement worried

Ruffy7 said:

hi Helen
Sorry you are here but this is a good site for info and opinions. Are you seeing an oncologist? If not, I would. Also no problems with getting second opinions or more. You have to be confident in your drs and their recommendations and your choices. My cancer, though not uterine, appears to be taken care of by surgery, no treatment recommended now unless something shows up. I see my new onc every 3 months for scans and bloodwork. I feel comfortable with this plan now but wasn't crazy about it when newly dx'd - wanted to do something to feel like I was fighting it. It gets better as time goes by.

Hi Ruffy7
We didn't have a gyn/oncologist here but an onologist has agreed to see me. I really like my Gyn who did the surgery. The fist biopsy said 1/1 then they did a D&C which said a 1a,
But after the surgery was done a Pathology came back it was a 1b with deeper into myometrium. Pathologist said need treatment but when it went before the tumor board they couldn't agree so they decided just to wait and see. I know that this kind is very manageable but would rather have done at least a little something. I am trying find a place to go to for a second opinion that has a gyn/oncologists on staff. Thanks for getting back to me.
Helen

Ruffy7 said:

Where are you located? In
Where are you located? In the past year since I was dx I got 3 opinions from local oncs and even consulted with 2 out of state oncs. Maybe you could do that though sometimes there is a charge for it.

located Texas
I am in Texas I have called around several places, Waiting for a couple of them to get back to me. Just want to be sure that it is ok to wait. My surgery went really well and I'm sure
I will be fine. I guess it's just the unknown. I know that it will be pretty expensive but I don't want to to take a chance that there is something more I can do. I really appreciate
all of the advice.
Helen

Double Whammy said:

Second opinion
It sounds like you're in that "gray area", and given that you are, you might want to seek a second opinion. Do you know why you didn't have lymph node testing?

My situation was similar to yours, just not as much myometrial invasion (1/3 of the way). I was 1a and grade 1. I needed no further treatment, just observation. Grade 1 is a good thing. My gyn/onc did remove pelvic (but not aortic) lymph nodes and commented to my husband that he probably didn't need to. He also did a pelvic wash. Everything was negative. He did tell me prior to surgery if there was any myometrial invasion, he would remove lymph nodes.

You might also want to check out the NCCN Guidelines www.nccn.org to give yourself a reference to discuss with the oncologist or gyn oncologist.

Good luck. Let us know what you find out.

Suzanne

second opinion
Hi Suzanne,
My endo biopsy came back 1.1 and my Gyn wanted to do a D&C it came back 1a and they said there was no need to do any lymph nodes since it was caught early. I would need no treatment. We don't have a Gyn/Oncologist here so I went with the Doctor that I had been sent to. I had no symptoms so I guess they felt it was super early. After the surgery when
the pathology cam back it was more advanced than they thought. Did have pelvic wash and it was negative. Thank you for the reference I will check out the NCCN guidelines.
Thanks Helen

light42day said:

Second opinion
I think I'd feel better with a second opinion with a Gyn/Onc if I were in your place. My Gyn didn't think I even had cancer and then was totally surprised when my path report after the D &C showed Endo cancer grade 2. It was found to be stage 1 a after my surgery. I didn't have any myometrial invasion but did have a positive pelvic wash so I chose to do three rounds of chemo as a safeguard against recurrence.

Sometimes they like to do radiation when there's myometrial invasion I think. Anyway, it would be nice to know for sure and it sounds like you're not feeling very comfortable with where you are at this point. Please let us know what you decide and how it turns out.

blessings to you,
Peg

second opinion
Hi Peg,
I don't feel at all comfortable with it since the pathologist indicated I needed things. I don't even know the stage just the tumor grade at least no one has explained if I have one.
I called Md Anderson but they don't do Humama and I would have to pay out of pocket. That would be a strain but hubby says we will manage. They were supposed to get back to me with the amount I would need to pay but haven't heard from them yet. I don't know any other to contact. It is a little scary at this point. I guess it is just the unknown. Thanks for getting back to me it really means a lot to hear from others going through this.
Thanks again,
Helen

Ruffy7 said:

helen
You can call humana and they could probably give you names of oncs - my cancer is rare so.there are only a few onc in the usa that are familiar with it. I found them then contacted anthem to see who was in network. Md anderson was one of them so even tho I'm in ohio they still did a consult for me. Can't believe texas doesn't have a gyn onc that takes humana. Maybe your gyn could refer you to someone.

Humana
I did contact them but so fat they have only sent me information on breast cancer. We have Texas Ontology here but they don't have any gyn/oncs but there is a Dr that will see me
and I'm sure he is good and I made an appointment with him.
Thanks, Helen

txtrisha55 said:

If near Dallas, try UT Southwestern
The Harold C. Simmons Cancer Center is a multidisciplinary program responsible for the cancer care and cancer research conducted at UT Southwestern Medical Center. Our mission is to reduce the impact of cancer today and to work to eliminate the threat of cancer in Dallas, North Texas, and the nation.

The Simmons Cancer Center is among the most elite cancer centers in the country and the only National Cancer Institute (NCI)-designated cancer center in North Texas. I looked on their website and it shows they take humana but not sure if it yours.

My Gyn Onc Dr is a women Dr Lea was great. I was dx with stage 3C1 carcinomasarcoma in April 2011. Complete Total abdominal hystrectomy had six rounds of carbo/taxol every 21 days, Last treatment was Aug 22. So far so good still NED 1 year later. If you are in the Dallas area I would recommend them. trish

Near Dallas
Hi Trish,
Dallas is close (at least for someone in Texas). It is about 100 miles north from me. I will call on Monday and check it out. I do have an appointment with a Dr. on Sept 5 th but is with one on the tumor board that wants to wait and see what happens. That maybe the normal way it's done and if so that is ok but I'm new at this and will feel really good about choices if I get a second opinion. It was a complete surprise as the only symptom I had was pain in my right groin area but it was assumed that it was very early since nothing was going on with me. Not having a gyn/onc in the area I went with the GYn Dr. that I have.
I really like him and he was worried that a wait and see option was chosen. He said there seemed to be a lot of controversy about uterine cancer and it's treatment. Not having any lymph node testing did bother me and all sis of my girls. Your type is so much worse than mine and I'm so glad you are doing well I pray that are in total remission. Thanks you so much for taking the time to let me know about your cancer center and Doctor Lea!!
Thanks agai,'
Helen

txtrisha55 said:

If near Dallas, try UT Southwestern
The Harold C. Simmons Cancer Center is a multidisciplinary program responsible for the cancer care and cancer research conducted at UT Southwestern Medical Center. Our mission is to reduce the impact of cancer today and to work to eliminate the threat of cancer in Dallas, North Texas, and the nation.

The Simmons Cancer Center is among the most elite cancer centers in the country and the only National Cancer Institute (NCI)-designated cancer center in North Texas. I looked on their website and it shows they take humana but not sure if it yours.

My Gyn Onc Dr is a women Dr Lea was great. I was dx with stage 3C1 carcinomasarcoma in April 2011. Complete Total abdominal hystrectomy had six rounds of carbo/taxol every 21 days, Last treatment was Aug 22. So far so good still NED 1 year later. If you are in the Dallas area I would recommend them. trish

Dajjas Ut Southwestern
Hi Trish, Thanks so much for the information. I was able to get an appointment with Dr Lea on September 17th.I am getting all my records ready to send to them. Thanks again, Helen