New to the Sisterhood

WinnieH said:

The dr. said the D&C will

The dr. said the D&C will help determine if I need a hysterectomy or radical hysterectomy.

The Tramadol seems to lessen the pain from an 8-9 to about 2-3. At least I can drive and do daily activities again. Keeping fingers crossed for a restful night's sleep. I'm limited in terms of what i can take for the pain since I will have surgery soon. Can't take certain OTC ones because they can cause complications (no Aleve, aspirin, Motrin).

I found the 4 NCIs in Los Angeles and my dr. is with USC Norris. *At least one silver lining in this jourmey so far.

Glad you are getting some pain relief!

When I had spotting, I had a couple of different ultrasounds and a polyp was located.  I had a D&C in which my cancer was found.

I had to wait a month for my surgery after meeting with the GYN/onc for the first time.  In the meantime, he sent me for a CT scan at a different hospital where I worked.  I never had a PET scan at that time.  I was able to see the report of what the CT scan found and I could tell my cancer was extensive.  It had spread to both ovaries, the omentum, and the small intestine.  In fact, the report on the omentum said it had a cake-like formation, which to me sounded like a lot of cancer.  I tried to call his office to talk about it but couldn't get through his guard-dog office staff. I left him a message with them, but I doubt he ever got it.  I showed up on the day of surgery and was being prepped for a robotic surgery when my GYN/onc showed up.  He told me he had just looked at my CT scan from the other hospital that morning, and that he wouldn't be able to do my surgery robotically.  The cancer was too extensive.  Needless to say, that was a bit of a shock although I'd been suspicious that would happen.  I was expected back at work in 2 weeks, but I never did go back.  By the time I finished my cancer treatment, I was 62 years old and eligible for Social Security.   My surgery and chemo were successful even though I was found to have stage IVb UPSC.  I had just about 7 years of remission when it was found again last year after it grew extremely rapidly.  That meant more surgery and a different chemo drug plus one of the old ones.  Again, I'm in remission.  My GYN/onc suspects I'll get it back again in another 5 years or so, but hey, I'm alive. It hasn't been a death sentence for me even though I had the month wait for surgery the first time and even though it was the highest possible stage.  I don't know what the future will bring, but I'm 69 years old, so who knows how many years I'll have left anway?  My little brother (5 years younger) died at 57 from a heart attack, my father lived to 84 in spite of prostate cancer, my mother lived to 90 in spite of two different breast cancer occurrences almost 10 years apart, my maternal grandmother had breast cancer in both breasts at the same time and lived to her mid 70's, and my paternal grandmother was healthy and lived to 95.  Anything might happen, but the family seems to do pretty well at surviving and being cured of cancer.  Everyone who had it died of something else quite a few years later.

I admire your attitude with all you have been through. None of us know when we will be called home. My 88 yrs old Dad probably has colon cancer (still lives independently). His colon surgeon is pretty sure a polyp my Dad has is the source of bleeding despite the biopsy coming back as negative for cancer. My Dad has a 30% chance of never living in his own home again if he has a colectomy to remove the part of his sigmoid colon that has the polyp that the surgeon thinks is a slow bleed. My Dad has chosen to just live his life one day at a time. My Mom died of uterine cancer at the age of 72 thirteen years ago. Yes, none of us know what our “expiration date” is. My Dad’s cardiologist told my Dad not to have the colon surgery explaining that my Dad would probably die of some other cause before the cancer would take his life. My Dad is choosing quality of life over extended life at all costs -not an easy decision no matter what ones age. Thanks for sharing your thoughts! 

Northwoodsgirl said:

Pinky 104

I admire your attitude with all you have been through. None of us know when we will be called home. My 88 yrs old Dad probably has colon cancer (still lives independently). His colon surgeon is pretty sure a polyp my Dad has is the source of bleeding despite the biopsy coming back as negative for cancer. My Dad has a 30% chance of never living in his own home again if he has a colectomy to remove the part of his sigmoid colon that has the polyp that the surgeon thinks is a slow bleed. My Dad has chosen to just live his life one day at a time. My Mom died of uterine cancer at the age of 72 thirteen years ago. Yes, none of us know what our “expiration date” is. My Dad’s cardiologist told my Dad not to have the colon surgery explaining that my Dad would probably die of some other cause before the cancer would take his life. My Dad is choosing quality of life over extended life at all costs -not an easy decision no matter what ones age. Thanks for sharing your thoughts! 

Northwoodsgirl, my mom found out she had cancer and chose not to do anything.  She found out in 2010 (she was 85) and lived on her own July 9, 2017 until she went in to the hospital and then an assisted living for about six more weeks.  In the final weeks she said to me, "No chemicals, no stiches, no regrets".  I told her the my sisters and I completed supported her decision.  That there was no guarantee she would have lived this long if she had decided to go through with everything.  I know she also didn't want to be a burden to us - she wanted us to live our lives and not make decisions based on her. 

I know my mother lived on her own and loved listening to the radio and reading the newspaper.  That was her quality of life.  It cannot be an easy decision but, like your dad, it is there decision and we are right to support it - as hard as it is for us.  It can be hard and you are in my prayers.

WinnieH said:

Pinky, I'm so sorry you have

Pinky, I'm so sorry you have gone through so much but you are a fighter and I know you will continue to beat back this horrible beast.

I went to the hospital for my D&C and biopsy yesterday. As I was getting prepped in the OR, I started to leak several huge blood clots (sorry for the gory details) and there was just red everywhere. It freaked me out but the nurses were so kind and understanding in cleaning me up and keeping me calm. The gyn-onc decided not to scrap the utereus to avoid more bleeding but did do a biopsy of the cervic and cauterized a couple spots that were bleeding. I was out of the hospital after a couple hours with no negative side effects from the general anesthesia.

So now I am schedule for a hysterectomy or radical hysterectomy on Feb. 23. I'm praying the biopsy results will not require a radical hysterectomy. The gyn-onc said I will need a catheter for a couple weeks if I need a radical hysterectomy and that sounds scarier than the surgery itself.

 

The hardest part is waiting!  I will keep you in my prayers that you wont require full abdominal surgery.  Don’t be afraid of the catheter, you won’t even feel it!  I was actually happy that I had it after surgery because there wasn‘t any stress about getting out of bed, especially since they will pump you full of fluids.  For me, this experience has been much easier than I anticipated pre-hysterectomy (post 1 1/2 weeks).

Good luck - you are in our prayers!

WinnieH said:

I've been combing through the

I've been combing through the forum for advice in preparation for surgery. My hip/back is still hurting so I have limited time on the computer as I can't sit for very long. Here's what I have so far, copied from other threads. I would greatly welcome more advice from everyone. thanks in advance.

 

REQUEST geonomic tumor testing

REQUEST tumor assay

Eat a light diet over the next few days and if needed take a laxative

Pillows for the trip home

If open abdominal, get a velcro wrap to keep staples in place

The belly binder is a must even with laparoscopy.  It is much easier walking around.  Get it a little big.  I ordered it beforehand and put it on and it was too big.  However when I got home from the hospital it almost didn’t fit from the swelling.  It took a few days for the swelling to recede.

If you have someone that can spend the night the first night and the hospital allows it -I would recommend having them stay.  I sent my husband home to get some sleep because I was feeling good but I regretted it the next morning.

Get some gas-x.  The gas can be brutal.   I am almost 2 weeks post surgery and still taking it occasionally.  It really helps!

My doctor had a complete prep for me before surgery.  The prep was the same as a colonoscopy.  I wasn’t allowed to eat for 36 hours before surgery.  By the time I ate it had been over 56 hours and they forgot to order me breakfast or coffee (thus the advice to have someone stay with you).  I can do without food but coffee is a different story.

Take the drugs!  The Pain wasn’t that bad.  They gave me Percocet but I didn’t want to take them.  I took tylenol.  I wasnt in much pain but couldn’t get comfortable and after 12 hours took the percuset.  I slept like a baby and was perfectly comfortable.  I took it for about 5 days.  Now there is no pain but coughing and/or sneezing is still uncomfortable.

Last try not too stress ( I know easier said than done) - I found my imagination was a lot worse than reality and I was pleasantly surprised after surgery!

Let us know how you are doing.  Keeping you in prayers!

Betty

Whether you have robotic surgery or abdominal, it's really important to get up and move around ASAP after your surgery to get your intestines to wake up and start moving again after the drugs they give with the anesthesia to paralyze them (so they can do the surgery safely). If you need help, don't wait for it...demand it! Not moving around can lead to a condition called Ileus and trust me, you don't want to go through that (I did). No matter what's tying you down to the bed or how uncomfortable you may be, that is a critical thing and given how short staffed hospitals can be you may have to be a squeeky wheel to get help you need it.