My story - We didn't expect to find endo cancer

My journey begins on July 22nd 2008.
I had gone in for my regular exam and my gyn found another polyp on my cervix. I've had these regularly for years and they always end up being benign. This time as I told the dr. about extra heavy flow on more days of my period (even at 50 I wasn't exhibiting any menopause signs and was very regular). He decided that a D&C and hysteroscopy was in order to see if there was something causing the benign polyps and essentially clean things out to make my periods better. He also ordered an ultrasound to check things out before the D&C.

August 2008
The ultrasound showed fibroids and a small mass. AHA said the dr. this is what is causing the polyps so definitely D&C will clear this up.
Late in August my sister (62) went in for removal of fibroids, she requested a bikini cut since no other things had been found so it was a less conspicuous scar. One of her fibroids was really big and as they removed it the dr. found cancer cells. She called in an onc who did the lymph biopsies; didn't appear to spread. This freaked me out because the year before at 87 my mother had both a hysterectomy for endometrial cancer (she'd left untreated for a couple of years) and a bowel resection (for colon cancer). I called the dr. and said "should I be worried because of this?" He said no but they always do biopsies anyway so he'd make sure they checked things out thoroughly.

Monday Oct 27th, 2008
D&C Hysteroscopy - dr said all went well and all looked fine, saw pictures of what looked like a healthy uterus after the cleanup. Mass was removed but didn't look odd so would send for biopsy but he hadn't done an endometrial biopsy. We were going out of town so he said go and enjoy yourself and when I got back I could call for results but he was expecting no issues.

Monday Nov 3rd 2008 - 2:30pm
Called the dr. and he told me "Unbelievably we found early stage endometrial cancer. I wasn't expecting this. You need a totaly hysterectomy and BSO now; I don't want this to wait until December.

Thursday Nov 6th 2008 -
In the office meeting w/ the dr (very angry, anxious and depressed). How could this happen to me? I was being more healthy? Why wasn't this caught earlier? (Pap Smears don't catch this only D&C's or endo biopsies and best is a D&C because of more tissue). Is there an alternative to abdominal? No (which I found out on my own not to be true) and why would you want something else because you want to be free of cancer. Dr. didn't know that I've been struggling w/ not having a family for years for other reasons decided not to give birth but tried adoption and after 8 unsuccessful years my husband and I had given up. Crazy insane and a type A personality had to find some other way. Hysterectomy scheduled for 11/17. Saw my therapist on the same day and he worked w/ my husband to craft a letter to my gyn.

Friday 11/7 -
Started pre-op for my 11/17 surgery including CT scan to see if it had spread

Weekend of 11/8
Found HysterSister site, Found da Vinci site and read information, found names of doctors in the area that did the surgery fully determined to cancel 11/17 date if I couldn't get a 2nd opinion before that date. Luckily one of the drs was the onc from my sisters surgery.

Monday 11/10
Called Dr. and basically via a self referral go an appt for a 2nd opinion somehow they squeezed me in for an 11/23 appt. Later in the day heard from my gyn w/ name of other da Vinci dr. saying he could help me get an appt...husband called him and said "too late we're on it on our own already"

Weds 11/12 -
Meant da Vinci onc doctor and found out I was a candidate, scheduled surgery for 11/24. Cancelled my 11/17 surgery.

Fri 11/14
Called dr. and talked to him about colon cancer in the family. Since colon and gyn cancers are considered "familial" meaning if you have one you have an increased risk for others he said "good idea if your gastro dr could get you in for a colonscopy before surgery; in fact I'll delay the surgery 1 to 2 weeks if he can't." Got an appt w/ gastro dr for Monday 11/7

Mon 11/17
Gastro dr said you betcha you need a colonoscopy and you were due any way. If I find anything (non-cancerous) we'll want to put you on an every 2 year check up cycle because of family history. If you have a flexible schedule we'll get you in this week so you can keep 11/24 date.

Thurs 11/20
Colonscopy completed and was better than previous one because no polyps. Come back in 5 years unless you notice changes!

Monday 11/24
da Vinci LAVH BSO hysterectomy, everything went fine. Visually didn't appear to spread.

Weds 11/27
Pre-pathology indicates cells were pre-cancerous so appears we caught it early.

Sat 11/29
Surgically induced menopause showed up w/ a vengeance (headaches, hot flashes, insomnia, night sweats, mood swings, anxiety, depression). Some of the anxiety and depression were also because of the surgery.

Week of 12/1
Things settling down a bit on the menopause front. Experiencing surgical numbness that's supposed to go away sometime in the next year but will talk to dr. about follow-up. Therapist called me and talked me down from extremely tough day telling me I really didn't have a choice about having the surgery and having everything removed since uterine cancer is such a silent killer. He would have fought me if I had wanted to do progesterone to try to convert cells back to normal.
Generally recovery from the da Vinci going well. If I sit up in a straight chair too long the vaginal cuff incisioin aggravates my surgical numbness but other than that all goes well.

Sat 12/6
Scheduled blood test for general cholesterol check-up and found my GP requested all the hormone tests as well (full hormone panel, thyroid stimulating hormone and free standing panel).

Week of 12/8
Will have follow-up w/ my surgeon
Appt w/ my therapist
Scheduled an appt for 12/15 w/ my GP to see where I am on the menopause scale.

12/12 - a month after my initial consult w/ my gyn/onc he told me that they staged the cancer at T1a so it was in the endometrium (actually he thinks the D&C got all the cancer cells) and not in the rest of the uterine lining (those cells were identified as pre-cancerous). This is really, really good news on the cancer front because other then checks for recurrence there is No Further Treatment indicated. The non-recurrence rate is something like 95% so he's very happy about it. Not released for work yet because of fatigue from menopause and not healed from surgery yet. We'll see how it goes on my 12/31 appointment.
The downside is dealing with the surgical menopause so we'll see how that goes on my 12/15 dr's visit.

Update as of June 2009

I ended up being told to wait for sex for 10 to 12 weeks tried around 11 and much pain & bleeding (late Jan 2009). This resulted in vaginal infection #1. Irritated nerves in my thighs that hurt like crazy for about 6 weeks and still not fully resolved but are healing.

Tried about a week later & no infection but still lots of pain. I did have a couple of O's.

About 2 weeks later had vaginal infection #2

Middle of February because of stress of unexpected cancer diagnosis, surgical menopause, pain from intercourse, etc., etc. was diagnosed w/ clinical depression and started anti-depressants. Lost my O's due to final meds that were working for me, overall stress, pain and depression.

In March ended up with both a vaginal and yeast infection.

End of March was my first surveillance follow-up with my gyn-onc. The same day I had an appt w/ a new gyn and she found some granularization which she snipped.

Gyn-onc told me (in very nice way) he was there to treat the cancer but would get me to whomever I needed to get me well. He suggested a uro-gyn that specialized in sexual dysfunction which was caused me more stress because of thinking about sexual dysfunction.

Early April before visit w/ uro-gyn had a UTI w/ bloody urine, lots of pain and stinging.

She is very clinical but knows her stuff. She prescribed pelvic floor rehab and physical therapy which depressed me. Told me I'd have a bit of hard to because without ovaries I wouldn't have testosterone for libido plus no estrogen would cause dryness. She also recommended an Eros therapy device.

Under great stress went to pelvic floor rehab & everyone there is fantastic found both internal and external muscle triggers causing pain. Doing exercises, biofeedback and internal & external massage. Recently told to use dialator at home to help w/ internal stretching to get rid of internal mucsle triggers....great site that explains this type of pain is vaginismus.com. Felt weird about the therapy but therapists kept telling me that it was good I didn't wait, that for other surgeries like shoulder surgery PT is prescribed weeks after the surgery, if I would have waited 6 to 12 months it could have taken longer to resolve. ANother sister recommended this site to give some info on what PT might be like, this was after I started but it's good http://www.pelvicphysiotherapy.com/index.html

She also diagnosed me at the end of April with an autoimmune disease in those regions that no other gyn ever caught. It's called Lichen's Scloerosus and it's chronic, uncurable but controllable. Good thing is that she got it early because it can cause scarring and adhesions that close off the urethra and vagina and cause you to "lose" your labia. Prescribed high powered steroids for eventual intermittent lifelong use.

Found a great yahoo site for LS and found out that estrace and T can help bring back tissues in the area. Originally gyn-onc didn't want me on any estrogen but knowing quality of life issues (and he doesn't know about the LS yet) he said he was okay with vaginal estrogen and he'd just watch me closer. So got the estrace and doing blood work for testosterone.

I had kept at being intimate w/ hubby through all of this even through the pain because I didn't want him to suffer losses I had suffered (I know sounds like a martyr complex but trying to "live" for him was the only thing helping me hang on).

Early in the week we did the deed and I was close to an "o" and very little pain, today we did the deed and I had a wonderful "o" even without the testosterone and wonderfully really no pain. It has been months since an "o"

I still have more PT and I know w/ the estrogen and T (if I go that route) will need to be extra careful with the cancer and I know now that I have LS and have to watch it for the rest of my life but I feel like I'm almost back. Not off the antidepressants yet but I know that will come with time too.

Why do I tell you this because if you get the right doctors, learn things about your body and your issues, get the support of wonderful people (personally and on this site), if you have a DH hopefully he's understanding and supportive (which mine is, the eternal optimist to my pessimism), get physical therapy, check on hormones (not saying you have to do them didn't think I would but the LS tipped the scales) you can get back.

It wasn't / isn't an easy journey for me but I keep moving forward. I hope everyone here finds their support network and their way back.