They missed the mass so I had Surgery again. Did you?

Michele

I have tests for ovary HPV cancer stage three C. I Just finished Carbo/taxol seven cycles, and I am now on Avastin. Had complete debulking surgery at Moffitt Cancer Center with the removal of metastases to the peritoneum. I was perfectly healthy, had no symptoms and was getting ready to leave the USA for a year. Had a routine CA125 gynaecologist exam, and they suspected something. One week later, they had biopsies, were diagnosed and were sitting in the chemo chair.

Very frightening. Chemo starts easy and gets more difficult with each HPV treatment; it is cumulative. After treatments one and two, I made some work commitments. Thought…ok, I can do this. By treatment five, I could barely get out of bed and use a walker.

All hair was lost two weeks after the first CA125 treatment. Some very important points…… Plan to ice your feet and hands during treatment…..I bought freezable gloves and booties from Amazon. I had no neuropathy because of this. It sucks, but it works. Some people get the cold cap to preserve hair….only works a small percentage of the time. I suggest concentrating on feet and hands to avoid neuropathy and give up hair…. it will go. Pick cheap wigs off Amazon that look like your current hair style and colour…..work great.

Final thoughts

I purchased a very expensive wig in person, which doesn’t look great.

You can also take the wigs to your hairstylist, and they work miracles. I bought two of my most worn wigs off Amazon for $13 and had my stylist adjust the bangs. Some comfortable head wraps are good because you may be too tired or sick to handle the wig.

If you have HPV tag surgery, get a good oncologist for woman and a specialized gynaecologist cancer surgeon. I had to travel across the state to find a surgeon I liked, but I went locally for chemo since you will be going there a lot! You may be a candidate for HIPEC, which involves chemo administered during surgery, so look into this.

Many research HPV trials are in place…do your homework and choose carefully. Grocery delivery is a blessing. I also try to do some meal prep on days I feel better to have something healthy when I am sick. Wishing you the best on your CA125 journey, you may contact me if I can help. Regards, Michele

Shannah

I went to the ER with severe pain that I thought was a UTI. They did an ultrasound and found a 20 cm mass on my left ovary. The ER doctor stressed the importance of following up soon with an OB/gynaecologist but didn’t mention cancer. However, they gave me the radiologist’s report, and the last line was “Possibly benign or malignant cancer”.

I got an appointment less than a week later, and the OB/gynaecologist expressed concern about the mass. She ordered a CA125, which came back elevated (87), and I was referred to gynaecology.

I met with the gynaecologist, and surgery was scheduled 3 weeks later. It was an incredibly long 3 weeks, with several more ER visits for pain control. The last ultrasound I got before surgery measured 27 cm, so it was growing quite quickly.

During surgery, the frozen pathology came back benign, so my surgeon removed my left ovary and fallopian tube. However, the final pathology came back malignant, and I was told at my 2-week post-op appointment when I got my staples removed. She’d told me this was a possibility due to the lower quality of the frozen pathology, and I don’t know; I just had a vague, bad feeling in a day or two leading up to the appointment. I was expecting it, I guess.

Surgery plan

Unfortunately, that means I need another CA125 surgery. I’m getting my hysterectomy/staging surgery on Monday. All in all, it took about 4 weeks from discovering the mass to my first surgery. It was an ORADS-5 mass, so they took it pretty seriously.

Now, I did have a smaller, 10-ish cm cyst last year. It was only ORADS-3, and the final pathology ca125 test result came back benign, but my gynaecologist suspects it was cancer as well. They did the test for HPV with pathology on a piece that was only 2 cm by 2 cm, so they might have missed it. They performed that surgery in September, and they found my big mass in February.

Naomi

“There is a large hypoechoic mass with internal echoes consistent with a septated cystic mass in the area of the right adnexa, 8.6 x 8.5 x 8 cm, suspicious for right ovarian cystic mass. With the cystic mass, the right ovary is 11 x 8 x 8.5 cm..”

The exact words provided in my ultrasound results. Before speaking to me about the HPV results, my doctor scheduled an urgent test and CT with contrast. My family has a history of uterine cancer. And I’m terrified. Has anybody had a mass described like this? If so, was it benign?

“The uterus is normal in size and contour. A large soft tissue density right ovarian mass measures 60 HU in density. It measures 19 x 11 x 11 cm in size. There is no calcification, haemorrhage or cystic changes within the mass.”

Update

That was the wording on my results from my CT scan with contrast, and I’m unable to contact my doctor. My biggest concern is the mass has grown about 11cm in about 2 weeks. (About 7 and a half inches in size now) still worrying, though. I’ll keep updating as I get more info.

I went to the gynaecologist yesterday, and she did a pap smear and an endometrial biopsy (I have never been in so much pain). She took blood tests to check for cancer antigens in my blood, as well as elevated levels of ca125. She is leaning more towards CA125 levels of cancer at the moment. And has set an appointment for me on the 27th with a physician who will discuss and set a date for surgery. There are 2 masses. One on each ovary. The right ovary almost tripled in size within 2 weeks between my HPV tests and scans, and the one on the left ovary, which was not present on the ultrasound, appeared large on my CT scan. The mass on my right ovary is about the size of a fully ripe watermelon now, and the mass on my left is bigger than a fully ripe Granny Smith apple.

I’m in constant pain, and it’s all I can do to keep from crying.