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still waiting

Pebbles723
Posts: 11
Joined: Dec 2012

I received a call from my gyn yesterday. She has had the lab review my pap and they have confirmed it. She has spoken to the head gyn onc at Beth Israel Hospital in NY and he wants to review the slides. If he agrees with their conclusion, then a hysterectomy will be scheduled. I have also contacted Memorial Sloan Kettering and sent them all of my reports to see if they will grant me a consultation. So still waiting for definitive answers but at least things are moving along. In the meantime my bleeding has stopped the past 3 days, but now I am having light vaginal discharge. The cramping and pain continues.

debrajo's picture
debrajo
Posts: 745
Joined: Sep 2011

Just wanted to let you know we are here.  Things move so slowly then so fast your head is spinning!  Hope you get the best dr. and hospital and that the pain stops soon.  Try to rest and take care of yourself, the stomach virus and the flu are really bad right now.  Best, Debrajo

ConnieSW's picture
ConnieSW
Posts: 559
Joined: Jun 2012

Sounds like you are being very proactive and doing everything you can at this point.  Take good care of yourself during the wait so you will be in good fighting form.  You've got us in your corner.

Pebbles723
Posts: 11
Joined: Dec 2012

Okay, spoke with my gyn today. My pap was reanalyzed in hospital pathology lab. Their analysis was the same "atypical glandular cells of endometrial origin favoring neoplastic process. She spoke to 2 oncologists in her hospital- Beth Israel Medical Center in NY.  First doctor said he would not treat and just to watch. 2nd doctor said it really depended on if I was having symptoms (I have pelvic cramping and fullness along with 3 separate post menopausal bleeds).  My doctor said if it was her she would have a hysterectomy and I feel the same way.  She said she would do the surgery in conjecture with the gyn oncologist, laparoscopically, and they would do a frozen section and see from there.  

So I am seeing my dr next week to review the surgery and schedule the procedure. My feeling is that even though the biopsy and d&c were normal, the sono showed thick lining and my pap was abnormal so why take a chance.  This abnormal pap may be God's way of saving my life.  When I was diagnosed with a non malignant brain tumor 3 years ago, the only symptom I had was a numbness and tingling of my tongue which is not a typical symptom of the tumor that I had (acoustic neuroma). But it was a large tumor- 2.5 x 2.0 leaning against my brainstem, so my numb tongue symptom saved me. I am interested in your thoughts- please let me know what you think-

Also, is there a list of questions to ask the doctor somewhere on this site? They are going to do complete hysterectomy-uterus, tubes, ovaries- laparoscopically- is this just as good as having a TAH? Can they check lymph nodes this way? I appreciate any help you can give:)

NorahS
Posts: 93
Joined: Dec 2012

While you will get some answers here, I recommend HysterSisters for information on hysterectomies.

Hope you alternate between their site and this one in the coming weeks. 

 

 

  

 

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

Go with your gut feeling on which direction to follow.  We know our own bodies better then anyone else, so listen and get in tune with it!!!  As well better to be safe vs. sorry and let it go and this situation gets worse and more difficult to treat later.

I had abdominal hysterectomy (age 52 yrs) and 24 lymph nodes removed.  Doc suggested this full procedure as better able to view my insides, but everyone brings to the table their own experience.

Best to you in your decisions!

Jan

 

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

I had a D&C back in 2004 and it was clean and stopped the bleeding as I was 48 at the time and post menaposal for about 8 years.  Fast forward to 2011 and I started having major period again.  I had another D&C from same gyn dr and two weeks later was told there was cancer cells. Then had appointment with gyn/onc dr who did a TAH with lymph node removal.  If I had been able I would have tried for the the robotic but then they might not have taken any lymph nodes.  My cancer had spreed to one node.  It is a touch call to make.  Those that have had the robotic recover faster those with the TAH takes longer but it does give the drs the chance to look around and explore all the organs and remove the nodes.  Hinesight....If I knew back in 2004 that it would become cancer in 2011 I would have had a hystorectomy in 2004 so as not to get uterine cancer in 2011.  If I had to do it over again I would have had the hysto back then.  If you are already past children, as one lady I work with said, it is a part you do not need anymore, so get rid of it.  Having a uterus does not make you a woman because looking at people you cannot tell if they have one or not.  Good Luck on your decision and your surgery.  Remember the ladies on the board are here for you. trish

Hybridspirits's picture
Hybridspirits
Posts: 148
Joined: Nov 2012

I had a total hysterectomy done using robotic 12/12/12.  they must have improved the process as i had many lymph nodes taken out and tested,  for some reason she took out 61 pelvic and 15 arota so they took a lot out to test. Luckily they were all clean.  They checked everything robotic including the omentum and the wash.  The benefit i had with the robotic is it wss an amazingly quick recovery.  i didn't stay overnight, just stayed in the hopsital for about 15 hrs to be checked whcih because of the time my surgery/recovery room ended it was 9pm.  but i was ready to go by 1pm the next day.  they had me up and walking by 8am.  i have barely any scars from the robotic.  5 very little specs that i can see.  I don't feel any different now and feel as good as new.    BAck to exercising and all.  looking back the hysterectomyI had  was really nothing.

good luck with your decision and surgery

 

 

Sisters three's picture
Sisters three
Posts: 151
Joined: Nov 2012

When I asked my doctor which was better for surgery option she said robotic due to the fact they can see several times magnified while they are in there and can see what the tissues look like and make better decisions. I also had 22 nodes taken.

Double Whammy's picture
Double Whammy
Posts: 2272
Joined: Jun 2010

My routine but abnormal Pap was my only red flag.  I had no other symptoms.  It showed some normal endometrial cells, but that's not normal for postmenopausal women.  Biopsy showed complex atypical hyperplasia with areas suspicious for adenocarcinoma. Gyn onc said there was 30-40% chance it was cancer and hysterectomy was recommended.  He used the robot but very clearly said to me "my goal is for you to have the best cancer surgery possible" which meant if he had to revert to open surgery, he would.  All went well.  I did have cancer, early stage (1a), low grade (1), 30% invasion into uterine wall.   He removed lymph nodes (17) via the robot probably because the tumor was larger than small (under 2 cm is considered small and would probably have not necessitated lymph node removal, but mine was 3 cm), and did a pelvic wash, but that was all he felt was indicated because all were clear.  I had an exceptionally easy recovery from the surgery.  In fact, he allowed me to start chemotherapy for breast cancer 3 weeks after surgery.  I felt fine, labs were good, etc. 

So, I agree that a hysterectomy is a better safe than sorry solution, especially with suspicious cells on Pap.  Like Trish, several years prior to the hysterectomy, I had had 2 episodes of very very light post menopausal bleeding, had biopsies and everything was normal at that time.  I'm very glad I didn't delay the hysterectomy again because with my low grade cancer, it had probably been merrily growing there for a long time and I would not have been happy to find out a number of years later that it was more advanced.  It would not have gone away on its own.

Best of luck to you.  Let us know when you're scheduled.   And I agree, Hystersisters is a good site as well.

Suzanne

Marganofan
Posts: 2
Joined: Jan 2013

Had my Hysterectomy (Da Vinci) in July and it was so relatively easy (my worst problem was the residual gas from the surgery).  I keep waiting for the other shoe to drop!

 

I had a total hysterectomy, diagnosed as above, no lymph nodes were taken, pelvic washings were, all other tissues were clear., not sure of tumor size, will have to go back and read the Path report. 

 

Begin my first follow up next week and will have to go every 6 months for next 5 years.  My question:  Do I have to see my GYN, as well?

Pebbles723
Posts: 11
Joined: Dec 2012

Just want to thank everyone for their support.  I know how important and wonderful support groups can be so I thank everyone for reaching out to me.  I just want to make sure that laparoscopic surgery is the right way to go.  How different is laparoscopic vs da vinci? can they check lymph nodes during laparoscopic surgery?  I just want to make sure that I only have to go through this once. I see some people have their appendix out as well- is this typical? Have so many questions- need to start writing them down for next weeks dr visit. 

nancibee's picture
nancibee
Posts: 49
Joined: Sep 2012

I've had no experience with laparoscopy but Hystersisters might be helpful.

I had DaVinci because my surgeon said it was minimally invasive. I had 23 lymph nodes removed, omental resection, total hysterectomy with bilateral salpingo-oophorectomy They took out my uterus, cervix, fallopian tubes, ovaries. Nothing left.

Pebbles723
Posts: 11
Joined: Dec 2012

Saw my doctor doctor and have set date for surgery on 2/25.  I will be having laparoscopic surgery with removal of uterus, cervix and fallopian tubes through vagina.  They will decide about the ovaries when they are in there- depends on what they look like and how big my fibroids are. Dr. said new studies report that ovaries provide necessary hormones for up to 10 years after menopause, so if they can leave them in it is better for the patient. I am glad this is it- just want it to be over. I have been having horrible bloating for the last 3 days- I look and feel pregnant. Dr is not sure why I have this. Anyone else with this symptom?

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