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Nervous--1st of 2 gyn-onc appts this week

Akita Lover's picture
Akita Lover
Posts: 14
Joined: Feb 2010

Today I go to get my official diagnosis and to find out when my hyst. will be scheduled. Thank-you ladies for all of the encouraging postings on this site. After reading several who said don't let the doctor office put you off for the first appt. I called them and my ob/gyn everyday asking is there any other paperwork or something you need to make my appointment today? After 3 days of this they made the appointment, of course, there was the weekend in there and so it was really 5 days. Thursday I go for my second opinion appt. and I am thinking that I may go with them anyway, since I called Tuesday and got an appt. scheduled on Wed., very fast--no fuss!

In reality, I will go with the one I feel most comfortable with and trust I suppose. I still haven't told my husband, I am waiting until I get my prognosis first to break the news. He travels alot for work and I don't want to give this news on the phone without being prepared with the facts. I am wanting to minimize any bad news, since it is my hubby who told me before my D&C that if they found anything wrong, it was because I didn't go to the doctor soon enough and that it wasn't "fair" to him and my son(teenage).

Thanks to the ladies on here who reminded me that I didn't ask for this and no one deserves to have cancer no matter how long they realize something may be wrong and want to stay in denial for just a little longer.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Hang tough. Take a friend with you. We are all with you in spirit. Waiting for reports is the worst. Try and keep busy. During this time I always find denial a wonderful coping mechanism until I know for sure. Why worry when it doesn't change anything?

Diane

Akita Lover's picture
Akita Lover
Posts: 14
Joined: Feb 2010

Diane,
Thanks so much for your words of encouragement. Your right, denial is a girl's best friend. So far the one doctor I have talked to said that a total hyst. should get all of the cancer cells...so I am a bit more hopeful than I was this morning. I do still have another appt. for a second opinion though to make sure. The waiting is so hard, if it wasn't that I can talk to all of you, I would probably go crazy....

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Good news!!! When do you get your second opinion! Am hoping that the news is consistent. The pathology from the hysterectomy will be key to your ongoing plan. Take a deep breath and do something fun to distract you from the waiting!!

Keep us posted!

Karen

Akita Lover's picture
Akita Lover
Posts: 14
Joined: Feb 2010

Karen, thanks for your encouragement! I go today for my second opinion. Almost wanted to cancel so that I could keep the good news, but I can't stay in ostrich mode forever. I decided that I needed to be completely prepared and not just rely on one doctors opinion on something so important.

I will update here later, either *GOOD* or bad news

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending positive vibes for your second appointment!

Keep us posted :)

Laurie

Akita Lover's picture
Akita Lover
Posts: 14
Joined: Feb 2010

Good news is that this doctor at UT Southwestern, told me about the same thing. She told me that a total hysterectomy and all the lymph nodes in the pelvic and surrounding are would give me a good chance of not having to have any chemo or radiation. The 1st doctor only wanted to take a sample of surrounding nodes, and when I asked the doctor today about it, she said that it is not widely accepted to go ahead and take all the nodes whether they turn out to be good or bad.

The doctor said she can give me a complete diagnosis after the surgery and pathology reports come back. Otherwise I only have the general diagnosis of uterine cancer (possibly grade 1, no staging yet)

I agree with her, take it all out and improve my chances of no recurrence. So I guess same news today, just a different approach. I'm glad I got the 2nd opinion, b/c I really like her alot better than the one the other day, and if I'm going to put my health and life on the line, I should at least get to choose. Right?

Hubby is still not real supportive, don't know if it's b/c he's scared or just an ***

thanks everyone for your encouragement and kind thoughts, it really does help make it better.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

At least you now have 2 opinions which seem to be on same page...great! Not sure why doing hysterectomy, as what type cancer and/or what found to go to surgery.

I had 2 small tumors in my uterus (pathology showed cancer), had total hysterectomy, oncol doc took a sampling of 25 lymph nodes in varous parts of pelvic and upper areas. All parts taken out, fluid around parts and all but 1 lymph node were negative. Good for me, but since cancer was in ONE lymph node still had to do chemo and radiaton..boo hoo to me! We need to make sure we get it all as HOPING it's taken out with surgery, but don't always know that for sure.

Eight months after completion of treatments, I'm doing great...all tests clear as a bell. Hope you have the same successful journey as I did. Ask lots of questions of your doctors as I have 2 top of the line ones and they're so knowledgeable.

Best of luck!
Jan

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Our stories sound pretty similar....Had the total hysterectomy with one positive lymph node removed. Pelvic washings were clear, PET scan day after surgery was clear. Since one node
was positive, chemo and radiation were prescribed. I wonder if she should have take more nodes out, but she assured me she went back in and looked several times all the way up to see if any more looked suspicious. I am thru both radiations now (external and internal) praise God and are in the middle of Round 2 of Chemo.

I am hoping I am in a good place such as you when all this over. Thanks for sharing!

Laurie

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Glad to hear you got a second opinion. A university hospital is usually a comprehensive cancer center so there will be good coordiantion of your care.

Please remember that the more lymph nodes that are taken the more likely you will have to deal with lymphadema (swelling in pelvic area or thighs, buttocks etc.)
There is a fine line between taking too many and not enough lymph nodes. I had 22 nodes removed including 2 para aortic ( these are higher in the abdomen). If you look at a diagram of the lymph system there are hundreds or thousands of lymph nodes in our body. They are the filters which clean our bodies so they are very important.
All my nodes were negative but I was 2B and had the chemo and radiation.
Sooooo.....I don't know about removing all the lymph nodes in the pelvic area.

I think the National Cancer Institute should have a handbook or pamphlet for family members.
I worry about Hubby not being supportive at this time. Hang in there sister!
Love the dog pics...Akitas are beautiful and loving. Lori

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I would question taking ALL LYMPH NODES....never heard of that one yet. Why not sample test in a certain area as doc did for me? Sampled and took out 25 with only 1 having cancer. Do agree the more taken out higher chance of developing lymphodema, which is VERY, VERY PAINFUL AND NOT EASY TO ELIMINATE.

Best of luck!
Jan

Akita Lover's picture
Akita Lover
Posts: 14
Joined: Feb 2010

Jan,
Thanks, for the insight...the doctor did say that it is very controversial to take them all, but she felt that with my risks(i.e. mother had breast cancer, uncle had stomach cancer and I have PCOS and am overweight) that this was my best chance to get everything that might be affected and lower my chances of having it come back. She said that I might have a genetic mis-match even though I have only 2(that I know of)close relatives with cancer. I will of course talk to her again and get her opinion on the subject.

I just want to say thanks again to all the ladies who are so encouraging on here and so willing to give good information on the effects you have had.

Thanks again all,
hugs...Tera

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Tera,

Sounds like it might be best to take as many nodes as possible??? You know my doc did best he could to sample or take 25 nodes and found cancer in only 1. Very good,but did mean chemo and radiation as no guarantee he got them all. So...each approach is different and who are we to question the doc. I've always learned, just because they are docs doesn't mean they're correct so I tend to ALWAYS ask others whether docs or other professionals in the field.

Best to you...
Jan

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Laurie,

Your doc only took 1 node out which was cancer? Didn't sample others as mine did with taking ouit total 25?

Yes you do sound so much like myself except you're in treatments and I've been out since last July...yeah! You'll be right where I am so very soon and looking back, wonder how you did it. Still learning how to live with cancer option of coming back, but don't dwell on it.

When are your treatments over? How are you doing with all them? Did you have many side affects from radiation?

Best to you.
Jan

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Yes, she took only one node out, but after finding that one, she said she went back in and looked all the way up and down. I have no idea what that translates into technically, however, she seemed condident and the surgery lasted quite a long time.

I would say I am in the middle of my treatments....I did the Radiation and start of the Chemo simultaneously. The Radiation was LONG and challenging. I had the full abdominal and then the chimney. The effects were pretty rough for about 5 of the 7 weeks. My stomach is just now getting back to normalcy and even some days it goes back into inflamed mode. I survived through the Brachytherapy (4 sessions) and now am the proud owner of Dave the Dilator :0

My first round of Chemo was with Cisplatin...no big side effects. This round I am on the Carbo/Taxol and the first time with it I had pretty severe neuropathy in my legs and knees starting on day 3 until day 6. Not fun, but I limped through it. Now on Day 13 and still have the hair...so waiting for that shoe to drop.

My next Chemo is scheduled for March 24th. Onwards and upwards I say...

Thanks for thinking of me...

Laurie

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