In the next day or two, surgery will be scheduled for me to have a complete hysterectomy/salpingo-oophorectomy, appendectomy, and removal of a mass next to my spleen which the surgeon seems to think is a splenule, but wants to be sure.
Some background… Approximately a month ago, I noticed a defined, round, movable lump above my left collarbone near my neck, around ¾ to 1” in diameter. I could not find any other lumps or swollen lymph nodes. I also was experiencing a cough that had lingered for about 1 ½ months. (I have experienced this cough in the late summer months for at least the last 6 years and it always goes away.) I went to my family doctor who sent me for a CT scan of the chest with contrast. By the time the CT was scheduled 2 weeks later, the lump was no longer felt, however the area above my collarbone seemed full and “fatty”. My cough had also completely cleared up.
The lump did not appear on the CT scan. However, a 2 cm mass next to the spleen was discovered (splenule, lymph node or other?). Based on the radiologist’s recommendation, my doctor sent me for a CT scan of the abdomen and pelvis with contrast. That one confirmed the 2 cm mass by the spleen and also showed a 7 cm complex cystic mass appearing to involve the right ovary. A subsequent ultrasound confirmed the same with no ascites.
I scheduled an appointment with my gynecologist where I expressed my desire to take this matter up with an oncologist directly. We also decided that is was time to have a complete hysterectomy. He referred me to a gynecological oncologist who is the surgeon that will perform the procedures.
More history… In 1991 I had a laparotomy to remove an endometrioma on one of my ovaries. It was one, fairly large growth (I can’t remember the size), and was the only visible implantation of endometriosis. To control this post-surgically, I went on the birth control pill and remained on it until 1999. In 1999, I began to experience extremely heavy, long duration periods with at least spotting and often full flow every day between periods for a few months. My gynecologist at the time diagnosed uterine fibroids and performed and D and C which gave no relief. He wanted to perform a myomectomy, but I was concerned about the effect uterine scarring would have if I decided to become pregnant.
I went to a fertility specialist who performed a laparoscopy and hysteroscopy. I had both intramural, sub-mucosal and pendunculated fibroids. He was able to remove the pendunculated fibroids hysteroscopically and felt that would be enough to relieve the heavy bleeding and buy me some time to try to get pregnant. (I have subsequently had two children and my husband has had a vasectomy. We are both 44 years of age.) He also discovered during the laparoscopy that I had some adhesions where one had caused an ovary to adhere to the back of my uterus. He stated that it would require further surgery to repair this so it was left alone.
After the birth of my last child in 2002, I went on the birth control patch, then the NuvaRing until 2006. I went off of it because I developed high blood pressure. In 2007, my periods although not heavy, began to get longer - approximately 8 or 9 days. I underwent the NovaSure endometrial ablation procedure in April of 2008 which reduced the duration of my periods to around 3 or 4 days and they have become quite light.
A week and ½ ago, my regular gynecologist ordered CA-125 and CEA tests. The CA-125 was elevated (77.3) and the CEA was normal. One week later, the gynecological oncologist ordered the same plus, hCG, and LD tests. All were normal except the CA-125 which went up to 109, however, my period started 3 days prior.
That brings us back to today, the gynecological oncologist and my questions. The procedure as stated above will definitely involve the removal of the following: uterus, tubes, ovaries, appendix and mass next to the spleen. Depending on the biopsy during surgery, it could also result in the following: splenectomy, omentectomy, and removal of any involved lymph nodes. He also said something to the effect that depending on what he finds on the intestines, he may do a bowel resection and “temporary” ileostomy or colostomy. I am not having any intestinal symptoms and had I not felt the lump above my collarbone, none of this would have been discovered. My annual gynecological exam and mammogram this past July were normal.
Now, my main question. If the biopsies during surgery come back negative for cancer, isn’t extremely radical to do a bowel resection if endometriosis is found on the intestines since I am not experiencing any intestinal/digestive problems? Even if “chocolate cysts” are found there, couldn’t they just be “scraped off” the outside of the bowel with no further trauma to the intestine? I realize that they could continue to grow and cause problems after surgery, but if they are just cleaned off and with the ovaries gone, shouldn’t the reduction in estrogen be enough to prevent any problems?