Scared with so many questions
First off, I apologize if I am all over the place with this. I am still trying to take it all in. I am a Critical Care Paramedic and understand medicine. But when it comes to this... I am completely and utterly lost, maybe because I am the patient.
Ok, Here is my story: I had a vaginal hysterectomy due to a prolapsed uterus. It was a personal decision and not a required surgery. I also had my bladder lifted and a sling in place. I had a hysterectomy in which my uterus was removed (I kept everything else) on January 27, 2012. Two days after my hysterectomy I was in for emergency surgery due to a collapsed urethra. I now have a stent in my right urethra into my bladder. I had very minimal pain after my hysterectomy, all my pain is from the stent that is in place. I have severe pain upon urination. With right flank pain afterward, similar to a kidney infection. I went to my two week check up with my OB GYN and he discussed my pathology report. He said much to his surprise I had caner. He said that it was grade 1 and 3 mm through my very thick endometrium into my uterus. Of course I remember very little of my discussion after hearing the word cancer. He said that because it was grade 1 that I did not need to see an oncologist but if I felt I needed reassurance he would arrange a consult. I see an oncologist next Tuesday.
I discussed with my Dr. at the time that I had a very large amount of yellowish discharge, causing me to wear a pad, It was not itchy but I felt raw. My Dr. stated that it was a yeast infection due to being on Cipro for two weeks. (I have never had a yeast infection in which I did not itch, and never yellow like this) He prescribed me a pill to take I take one pill every other day for three days. I am finished with them and still have the discharge.
My questions/concerns: I MAINLY just want to know if these things are normal or not.
I understand what grade 1 means, but, I now feel like I want everything else taken out so that I do not take any chances. Am I being paranoid?
I am having a tremendous difficulty sleeping or staying asleep.
I now fear that it is in my bladder or urethra and that is why it collapsed.
My moods are all over the place, I forget things, I am very emotional. I know that I am lucky, I have been told that I am lucky I did this when I did, but I don't feel lucky.
Am I cured? or do I still have cancer?
Do I have the right to request a PET scan?
Could the yellow discharge be an infection (other than yeast infection) Usually my yeast infections clear up after one pill.
I still have pain in the right flank sometimes unbearable. I have been told that it is due to my bladder spasming from the stent.
Hi. I am so sorry that you are having these problems. It is a horrible time around tests, answers, often more tests, wait for more answers then plot a treatment path if one is needed.
We, can totally understand how you are feeling. We want to know NOW. We have all been there and it is the pits.
I think that you would realise too (after a couple of deep, steadying breaths) that you ask the questions of us that we can only guess answers to, just like you but we can not diagnose. It equates to your arriving to a call out, and before you can even examine them they ask you if their chest pain is heart attack? Indigestion? Oesophageal spasm? They hope like heck that you can give them the answers they need.
I am very glad to hear that steps are being taken. That you have an Onc appointment.
Is there anyone who can come with you as another set of ears as we can miss out on hearing stuff when we are so worried.
I would also write down you symptoms and time line just as you have here and the questions including the ones you put to us and anymore that you can think of so nothing will be forgotten during the appointment.
Good luck and we are here for you.
Aussie, age 59
1987 CIN 111. Cervix lasered, no further problems.
Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.
Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
6 chop14 and Neulasta.
Clean PET April/10, 18 rads 36gy mop up. All done May 2010
Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
Discharged Nov 2014.
May/2012. U/sound, thyroid scan, FNB. Benign adenoma.
Reenien -- I am not a doctor and certainly can't answer all of your questions. But the fact that you are grade 1 and only 3 mm penetration into your uterine wall sounds very encouraging. And the fact that your doctor does not even think you need to see an oncologist is encouraging. Add to that the fact that endometrial cancer is very curable, and it sounds to me like you are in pretty good shape! If the cancer started in your endometrium and has only gotten as far as the first 3 mm of your uterine wall, then the possiblity that it has gotten to your bladder seems pretty remote. I mean, I guess anyone can have cancer anywhere, but.... unlikely IMO. Not sure why you would need or want a PET scan, but you can ask your doctor about that. I have no idea at all about the bladder, infection, stent issues that you raise.
Sounds like you have put together a good list of questions for your doctor, and I think that it is good that you have the appointment. I agree with Didee's advice regarding brining someone with you to the appointment (particularly a good idea since you are feeling anxious) and writing down your symptoms and questions. Your doctor should be able to answer all of your questions.
stage 1 (10% penetration of myometrium), grade 2
daVinci hysterectomy March 2011
No further treatment. Feeling great!
Thank you for the support and advice. My husband will be going with me. I have composed a large list of questions. Thank you all again.