Real People Stories – Eve

Hello everyone! I was diagnosed with ovarian CA125 levels blood test for cancer on March 16 2023. I had slight symptoms of a urine infection for a few days, so I decided to make an appointment with a urologist through my health insurance. The urologist saw me on March 15 at a private hospital; he ordered me to do an ultrasound, an X-ray test and an HPV analysis to determine what treatment to give for that supposed urine infection.

They did the CA125 tests the next day, and the diagnosis was immediate.

As I later learned, ovarian tumour CA125 cancer does not show signs of its existence until it is very advanced. The ultrasound showed two large masses, one in each ovary and a lot of free fluid throughout the abdominal cavity.

From that moment on, everything went very quickly. 

I was seen by a gynaecologist who explained to me directly what I was facing.

He told me that I was in for chemo and major surgery. I couldn’t believe what he was telling me; I had gone there for a urine infection, and a few hours later, they were telling me that I had a 98% chance of having advanced ovarian cancer and that what awaited me was a long path of thorns. Moreover, I asked him not to continue talking and to wait for my husband to arrive so he could tell us everything he had said to me again once he was with me. But I needed someone holding my hand to hear all that again.

I had a CT scan that same day, which revealed that not only was there a mass in each ovary, but it had extended to the peritoneum, and there were more affected areas. In addition to ovarian cancer, she had what is known as peritoneal carcinomatosis.

All of this that I have told you happened on the same day.

From having a completely normal life, I went on to have a diagnosis of ovarian cancer and peritoneal carcinomatosis that required quick action.

Then I called my HPV gynaecologist and told him what was happening to me; I sent him the TAC report, and upon reading it, he told me to thank that private hospital (HM Rivas) for the speed with which they had acted, but that given the seriousness of the matter, I should go directly to the CA125 emergency room. From O’Donnell so that the diagnosis could be confirmed there and she could begin to be treated through the public health system. That same day, I went to the emergency room at the O’Donnell maternity hospital, where after repeating the analysis and ultrasound, they confirmed the CA125 diagnosis.

It was confirmed

To all this, I have to say that I have gone to my testing with my gynaecological HPV check-ups every year. Between August 2022 and March 2023 (7 months), my ovarian cancer appeared and grew very quickly.

A week later, and given that everything was going to happen very quickly due to the advanced CA125 cancer stage I was in, I decided to tell my family, including my 9-year-old son. That was the hardest part because I lost my father to cancer when he was only 38 years old, and I was about to turn 8. My son knows that his grandfather died of cancer, and also, 4 years ago, we lost this disease to my sister-in-law, my husband’s sister, at 46 years old, so when my son heard that his mother had cancer, the first thing he did was think of his grandfather and his aunt.

I tried to reassure him by telling him that my HPV-related cancer was “tiny” and that I was going to be cured, just like his best friend’s mother had been cured. He remained calm, but I feared we had arrived too late.

My physical condition began to deteriorate rapidly.

The ascites grew very quickly. I went from living a normal life to barely being able to move due to the inflammation I had in my abdomen.

On March 29, I had an exploratory laparoscopy in which they obtained samples of the tumour and also removed 4.5 litres of fluid from my abdomen.

Two weeks later, when the HPV test results were in, my cancer could be named. The bug was a high-grade serous carcinoma.

There are the large size of the ovarian CA125 masses. And the fact that there were more things affected in the abdomen. However, the doctors decided to start chemo before surgery to try to reduce the size of the tumour. My HPV-related warts and tumour treatment would consist of 6 cycles of chemo. And the surgery that they would do at the end of the chemo. Or, depending on the evolution, they would see it after the 3rd or 4th cycle.

Chemo commences

On April 15, I had my first cycle of chemo. And a week or so later, I began to feel better. But my body began to deflate because the chemo began to attack the CA125-derived tumour, and it stopped producing fluid.

The second shot arrived on May 9. The first two cycles went reasonably well. And I only had a couple of hard days from the fourth day of chemo. But after those two days, I recovered quickly and felt quite well. However, the following cycles were something else.

The third came on May 31st, and after that cycle, they did a CT scan on June 15th.

By then, they had also given me the HPV results of the genetic test analysis. Everything I was going through was enough. But they told me that I was a carrier of the BRCA1 gene. This implies that I have a high risk of having breast cancer. (60 %) So, they recommended that I undergo a double mastectomy. It’s suggested when I fully recover from what I am going through.

When that bridge comes, I will cross it.

The good news came with the CA125 test result and the CT scan. The chemo was working very well, and the tumour had shrunk considerably. The tumour committee decided that after. During the 4th cycle, which was on June 22, the time had come for surgery. And so they gave me some time to take the effects of the chemo. So, to get stronger, on August 1, they operated on me. 

The surgery was very brutal. Who would have known that HPV could cause all of this? They opened me from the sternum to the pubis, 44 staples. They removed my ovaries, the uterus, a large part of the peritoneum, and the appendix. And the final part of the colon. Also, the beginning of the rectum and other things that I didn’t even know existed. (the lesser omentum and the greater omentum). In the same surgery, they also gave me intraperitoneal chemotherapy. This consists of putting chemo directly into the abdomen at 40°C and letting it act for 1 hour.

I spent 3 days in the ICU and 10 more days in the ward.

Chemo is very hard, very hard. But going through this surgery has been the most difficult thing I have ever experienced. Today is October 1st, and I am still recovering. According to the surgeon, it usually takes 3 months to feel like you did before CA125 connected surgery physically. So, I still have a month to go to get there, but I’m on the right track.

On September 12 (one month and twelve days after the surgery), I resumed chemo. They gave me the 5th cycle in two days if my HPV analysis was ok. Also, they will give me the 6th and last cycle.

I am worried about the last cycle because, from the 3rd cycle onwards, the side effects have been worsening; this is cumulative.

Tell me it is the end.

Everyone tells me that there is only one left that I should focus on. And that I am about to finish (if finishing is something that is achieved by having this disease…). Yes, I try to think that it is the last, but only I know what the days after will be like, and it terrifies me to think about it.

After the last cycle, I will start taking preventative HPV treatment with pills. This treatment is indicated in patients who, like me, are carriers of the BRCA1 mutation. It is a shame to have tested positive in this CA125 result (there were no known cases in my family until now). Still, there is one positive thing, and that is that there is a specific treatment to prevent cancer related to the HPV mutation from appearing again.

Since the beginning of this HPV illness journey, I have tried to normalise it as much as possible with my family and friends. I have talked about it on my social networks. And I even published videos of the day my husband shaved my head. Losing my hair is something that, fortunately, has not affected me but I know that it affects many women greatly.

Be Positive helps to heal.

I have always tried to maintain an optimistic attitude, and I think that I am going to get out of this, that I am going to heal with CA125 level cancer. And I will be able to see my son grow up, which matters most to me in this life. I have also learned that you cannot always be optimistic and have a positive attitude; you must accept that there are very difficult moments when your spirit breaks down and allow yourself to cry and get angry at the world. For me, those moments of depression are also necessary. Crying is healing and necessary because always being animated and cheering for the demos is exhausting.

Another thing that I have also learned is that this disease changes your life completely; I will no longer be who I am. Fear has settled in me, and I know I must learn to live without letting it paralyse me.

Having CA125-related cancer is something that no one expects; your life stops while the rest of the world continues; that is what I have felt throughout this path that I have travelled. But we must maintain hope and think that, fortunately, there has been a lot of progress in HPV viral treatments, and an increasing number of women are managing to get ahead.

My father was not as lucky; he was diagnosed in 1980, and there was no treatment for his cancer. He passed away two years later because he spread, and there was nothing to do. Perhaps today, the result would have been different.