Not sure of cancer yet

PamelaD · New User Joined: 22 Oct 2006 Posts: 7

I'm a single 43 year old and back in February of this year I skipped a couple of periods (I had a tubaligation 20 years ago). I thought it was just getting to the range of menopause age. When my period started again it lasted about 2 months off and on. Some days it was almost nothing, others large clots.

I saw my gyno and he did complete blood tests, including CA125 which was only at 2. Also had an endometrial biopsy and an ultrasound and there was nothing found. He believed based on the blood tests that are edging towards menopause levels that it was just "normal" irregularity and if it continued I could go on a low-dose BC pill to regulate it. Well, for the next couple of months my period was about perfect as usual.

At the beginning of September I had severe cramps over the weekend and saw my doctor on Monday. I had a UTI, which I've had quite a few of over the last couple of years and it always hurts in my abdomen, never the burning urination. I did the 10 days of anti-biotics but the pain wasn't totally gone.

It then started to hurt in my left groin and down my left leg. I went back to my primary doctor and he thought I had a pulled muscle and I got a mild pain reliever. The pain got worse and worse so I was back there in another week. Another urine test showed no bacteria but there was microscopic blood in my urine.

He sent me to a urologist who scheduled a dye x-ray to show the kidneys and bladder (there was nothing found). There was also no bacteria but still blood. I told him that it was agony to pee, such sharp pain in my abdomen that I sometimes cried from the pain. I also told him that it felt hard right above the pelvic bone. He felt it and commented that it felt like a baseball. He scheduled me for a CT scan. I called my gyno and saw him that day. He did a pelvic exam and felt the mass and agreed that the CT scan was the best thing to do. Another week of almost unbearable pain that Vicodin, Darvocet or Tylenol 3 barely took the edge off.

Four days after the CT scan my primary doctor called and read me part of the report... "findings indicate uterine cancer or neoplasm" and said to see my gyno right away. His office called and made the appointment for me that day. Luckily, my gyno was able to get me an appt in a week to see a Gynocological Oncologist at a Women's Cancer Center.

The specialist did an exam and told me that he doesn't "think" it is cancer but a fibroid. It is 3.9 x 4.7 inches and there is a couple inch pocket of fluid. The tumor has also infiltrated the abdominal wall. They are scheduling a hysterectomy, possible removal of tubes and ovaries (the pocket of fluid may be an ovarian cyst), release and removal of scar tissue from 3 C-sections (he thinks that is why it has grown into the muscle), possible removal of part of the membrane that covers the abdominal organs, re-sectioning of the abdominal wall, and biopsy of the lymph nodes.

I'm so scared that they're going to find out that it is cancerous. My mother and grandmother died of cancer, my father has had malignant melanoma, my brother has it now and is waiting for it to be removed. Both of my sisters have had dysplasia.

I can't sleep well because I have to get up every hour or two because the mass is compressing my bladder. Once I'm awake I stay awake thinking of everything. I dread the night, being alone at night even though my daughter and granddaughter live with me. I've lost 12 lbs in the last couple of weeks though I'm not as nauseous now as I have been.

The surgery will likely be mid-November.

rmaureen · Experienced user Joined: 06 Oct 2005 Posts: 99

Hi,

I just want to welcome you and let you know I am sorry for all you are going through. With all the testing, the anxiety, and pain I can imagine you are under tremendous pressure. I myself was diagnosed with cancer and for over 1.5 years doctors assumed it was fibroids causing my heavy bleeding. I was never tested for cancer. My twin sister on the other hand had fiibroids, heavy bleeding, and pain--she did not have cancer! As twins sharing similar genetic composition our outcomes where totally different! Another good thing you mentioned was the endometrial biopsy showed no signs of cancer, so that is quite hopeful! I wish I could give more sound advice, but I just want you to know people around here understand your anxiety and care. You will be in my prayers, please let us know how your surgery turns out.

Rhonda

PamelaD · New User Joined: 22 Oct 2006 Posts: 7

I've been reading through posts and though there is a lot of tragedy there is also hope and strength. The thing that bothers me most now is the pain that weakens the body and spirit. The mass seems to be getting bigger all the time and some days it starts hurting in a new area. Going to call my doctor today about getting something stronger than Tylenol 3 to make it through the couple of weeks until surgery.

My company, where I have worked for almost 14 years, has been terrific. I've got emails and calls from co-workers and my director offering support and to concentrate on my health and getting better, don't worry about work, it will be there when I'm ready. I'm grateful to not have a financial burden on top of everything else since I have good medical coverage and I added long-term disability when I became single 6 years ago for just such an event because there would be no one else to share the load.

I have to put faith in the gynocological oncologist that he believes it is not cancerous. I've looked at his qualifications and training... John Hopkins residency, USC fellowship, Director of Gynocological Oncology at UCSF Medical School and now with the Women's Cancer Center of Northern California. As he says, hope for the best but prepare for the worst.

Pamela

PamelaD · New User Joined: 22 Oct 2006 Posts: 7

I went to my gyn on Friday because of the pain and that morning I saw that the skin around the old C-section scar was pink and very tender to touch. He gave me a prescription for Vicodin ES and an antibiotic. My surgery had been scheduled for Nov 20th.

I got a call from his office on Monday to tell me that they re-scheduled the surgery for Nov 2nd. My gyn called the oncologist and told him that I did not look good and got it moved.

I went for pre-op tests yesterday and today I do a clear liquid diet. Scared, nervous, but glad that it's being taken care of now instead of waiting another 3 weeks.

Everything feels so much better after 5 days on the antibiotic. The constant deep pain is gone, mainly just feels like pressure, it no longer hurts to urinate and the area of pink skin is only about the size of a quarter.

Pamela

rmaureen · Experienced user Joined: 06 Oct 2005 Posts: 99

Please let us know how your surgery turns out and what your doctors determine the problem to be. I am so glad the pain is gone, I can certainly empathize with that. Yes, I think its better to get the surgery over with just to eliminate the cause of the pain. Pamela, you will be in my prayers.

Rhonda

PamelaD · New User Joined: 22 Oct 2006 Posts: 7

I had surgery last Thursday and came home from the hospital today. It was found to be a massive infection and an abcess was the "mass" on the uterus on the CT scan. They removed the uterus, tubes, ovaries and cervix. My bladder and bowel were also fused to everything else because of the infection. It all had to be seperated and tissue removed.

It's been a hard week of sometimes excruciating pain, non-working bowels, several drainage tubes and catheters in both urethra and abdomen and 3 IVs. I still have staples and bandages and the catheter through my abdomen into the bladder to keep it empty and give it time to heal. I'm to make an appointment for Monday to have the staples removed and in another week to have the catheter removed.

All of the pathology work has been done and there is no cancer, nothing abnormal.

I learned a lot these last few weeks, here and searching the net. Maybe more than I ever wanted to need to know about uterine cancer. I will be awhile in recovering but I will recover. Thank you to all the people who read and replied and to all the other threads I have read.

Pamela

rmaureen · Experienced user Joined: 06 Oct 2005 Posts: 99

Hi Pamela:

Thank God! That is such great news!!! Thank you for sharing what you have gone through and the investigative nedical process. I know your story will be a great source of encouragement to others with similar problems---bad symptoms like yours were are not necessarily indicative of the presence of cancer! Wishing you a speedy and pain free recovery, Very Happy

Rhonda

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