Hi Everyone, my name is Christina, I am 31 years old, married 6 yrs to an amazing man. Just when life seemed to be getting on track, things started to go wrong. My husband and I were trying to start a family. After beging diagnosed with PCOS, we were seeing a fertility doctor. So after months of clomid and bi-monthly ultrasounds....I was concerned when my doctor said there was fluid collection near my left ovary. Initially he chalked it up "everyone has fluid collection at times in ther body caviites." In late March 09 I ended up having a formal vaginal ultrasound, and it was just a matter of wanding up higher that a mass was detected.
I was then referred to a gynecological oncologist at a very good teaching hospital. The plan was to do a total abdominal hysterectomy, bilateral salpingo-oophorectomy...should cancer be found. I knew it wasn't good when they physician said he felt the tumor, and it felt hard on the rectal exam. I had a CT which confirmed cancer in my pelvis and omentum, and carcinomatosis on the abdominal cavity, implants on the colon. The surgical approach was changed, i no longer qualified for a laparscopic procedure, and it was converted to the open approach. My surgery was also moved up.
The day of surgery was scary (April 09)......I came out of surgery earlier than expected. And this was because the GyneOnc Surgeon explained to my family that the cancer was worse than originally thought. And he was only able to remove my right ovary, right fallopian tube and a tumor that was on the right side. He also removed my omentum and attemped debulking surgery on my colon on abdomen. However do to excessive bleeding, they did not feel it safe to proceed with any more surgical resection. I still have a great deal of tumor burden in my pelvis. When the surgeon woke meup from my surery he actually told me "it's bad, it's bad."All I could do is close my eyes.
Initially it was thought that I had Ovarian Cancer, however after the final pathology came back, the final diagnoses was Stage 3C Serous Papillary Carcinoma. I did have ascites that was positive for cancer.
This has been tough to deal with. I do have alot of family support emotionally. However I feel that I am the one who has to fnd out everything on my own.....Since I work in the health care field my family seems to think I would know best on how to handle my medical care. And I am the oldest of my siblings. It's just been tough dealing with all the emotional stress that comes along with this.Even though I have all this family support. I feel so alone at the same time. It's hard.
I can't believe that me and the wonderful man I married will never have children, or possibly not grow old together. Or that i will not be around to share in my family's day to day lives. I really feel I haven't even begun to live yet.
During my follow-up after surgery, the surgeon said he did not see any additional survival benefit with addititional surgery. However everything i read, survivors who have lived 10+ years seem to all have had the total abdoninal hysterectomy.
Currently I am taking Carboplain/Taxol and on the GOG-0218: Phase III trial, which is =/- bevicizumab(avastin) during the bulk of my tx 6 planned cycles.(I don't believe i am getting this drug at this time, just the placebo, or I am just not having side effects) Or I may get it during the maintenance arm of the study. I plan on revisiting the whole surgery issue when I meet with my doctor. Currenly I have just finished cycle 4. Has a f/u CT, ascites has resolved, decreased tumor burden in abdomen and pelvis.I have NO lynphadenopathy in chest, axilla abdomen and pelvis, no retroperitoneal or mesenteric lymphadnenopathy.
My CA-125 was 412.0 @ diagnoses, 108.0 at my baseline labs (after surgery, but before chemo cycle 1) 131.0 before cycle 2 Then it dropped to 41.7 before Cycle 3 and today, before my 4th cycle, I received my lab results and it went up to 47.8, I was do dissapointed.
At this point I am just wondering what else can i do? I am considering getting a second opinion regarding surgery. Does anyone know of a leading hospital in treating this type of Cancer in the US that is know specifically for this type of cancer? As you all know, it is very difficult to find information on this particular cancer without it linked up to ovarian cancer. Also, I am currenly reading Beating Cancer with Nutrition by Patrick & Noreen Quillin. However, my nurse practioner said strict macrobiotic diets are not the way to go.I have also started to grow more in my faith which has really helped me to deal with my situation.
I have read some post about getting more oxygen into your system. This may sound silly, but are we talking just about being outdoors more, breathing in the outside air or some kind of hyerbaricoxygen therapy? Also, I was curious on balancing ph and how that is done?
If anyone has anything to contribute I am all ears. Thank you for listening.
Christina