Real People Stories -Marta

Part III – Initial Laparoscopy and Unexpected News

Laparoscopy on October 6, everything changes! At the laparoscopy, they still removed a lot of ascites. The HPV surgeon informs me that tests show there are signs of infection, so on antibiotics for 5 more days, one or two chemos, and then major surgery. Except that that was before the RCP (multidisciplinary CA125 consultation test meeting).

Indeed, at RCP, my oncologist prefers that I do 3 treatments before a possible intervention. Hence, after this famous CA125 meeting, the test surgeon called me back to tell me that the intervention was ultimately not for the future. This will be the last time after testing that I have the HPV surgeon on the line.

I’m starting to go out again to walk and get some fresh air. The anticoagulants have had their effect, and I feel less out of breath. My first walk was 6/7 km!

Chemo and Side Effects

Three courses of chemo later, here we are on December 3, 2020, and 3rd Pet Scan.

On December 9, my file went to RCP again –> still no surgery

My body is starting to experience the effects of Taxol, tingling in my hands – neuropathy. Therefore, The oncologist decides to do another HPV treatment with Taxol and stop it to limit the risks/damage.

January 6, 2021: 8th chemo – we removed the Taxol and integrated Avastin, so no Polaramine except that there was a big allergic reaction during the administration of Carbo; we stopped everything, and they gave me an injection of Polaramine, and we restarted the carbon.

With stopping Taxol, I am a little less sick, but it still takes me 5/6 days to recover after the tests from each chemo treatment.

Doubts and Seeking a Second Opinion

I’m starting to have doubts; I no longer have any news from my surgeon, and my oncologist is less involved (from my point of view) elsewhere and hesitant.

While speaking to a friend, she gave me the contact details of a CA125 test gynaecologist who had treated her a few years ago and pushed/insisted I get a second opinion.

I made an appointment for 08/02. I find the gynaecologist cold and distant. He says nothing when he sees my file. He asks me if I have had a CT scan recently. I answer no. He examines me and then asks me to do a new scan.

I came home disappointed from this appointment and decided not to follow through.

February 16 New Pet Scan

Oncologist’s Update and Shock

February 18 Oncologist appointment: Madam, you are not responding well to treatment; you are not operable. Pardon? How? What? No, am I doomed? Once again, the tears rise but do not flow. I ask what that means in practice, she tells me that there are too many risks in operating on me and that she will “try” to register me for Gustave Roussy’s clinical trials.
I ask if my file has gone to RCP. She tells me no, that there will be no more RCP for my file. Okay, so the decision was taken at the last meeting on December 9, more than two years ago?! I am in shock!

And I ask my oncologist HPV questions. However, she is hesitant and unsure of herself, and her answers could be more coherent.

I tell her about my last CA125 blood test and that my results are below standard, she is elsewhere and tells me we will see about that tomorrow in the day hospital.

02/19 10th chemo: I wait for hours for my oncologist to finally come to see me and tell me that my results are not good and that we will not do chemo today but only Avastin!

My HPV decision has been made; I would like a second opinion. I will scan as the gynaecologist requested and see him at Pitié.
At the same time, the same friend gave me the contact details of a renowned oncology professor with whom I also made an appointment.

I asked to collect my first scanner at Hospital X and was told I must go through the legal department!!!!

Encountering a New Medical Team

It’s March 4; I arrive at the Gynecological Oncology department with my reports. I meet a first, then two, then a third doctor. The last is the referring surgeon; he takes me to a separate box and summarises my journey since the discovery of my CA125-type tumour. Some things seem incomprehensible to him; he asks me questions and takes the time he needs to write a report. Then, he examined me and immediately detected an umbilical hernia. For weeks, I had been complaining of pain in my navel to my oncologist, who systematically told me that it was due to the disease.

My file will be discussed in the CPR.

The following week, the surgeon called me to tell me that it had been decided in RCP to do a new laparoscopy to decide on the feasibility of resection surgery. I am a little disappointed because I was expecting an HPV late decision and not a new intervention. I informed him I would like to discuss this with my current oncologist before consenting.

Communication Challenges

I tried to contact my oncologist without success. I left a message for his secretary, informing her that I had taken a second opinion on CA125 issues and wanted to discuss this with her. The only feedback I have is a message from the oncologist who has been following me for ovarian cancer for almost 8 months, telling me that it was my right to get a second test opinion and that she was cancelling all my HPV appointments in the day hospital. I’m amazed; I insist on having it online because I’m stubborn!

In the meantime, I give my consent to the surgeon for the laparoscopy, which is immediately scheduled for March 18.

Preparing for Surgery

When I finally managed to talk to my oncologist, the only response was: I’m not a surgeon, and I can’t tell you why it was decided not to operate on you; I’m hallucinating!

March 18 laparoscopy, barely awake when the surgeon was at my side to tell me that I was operable and that the CA125 type operation would take place on April 6. Am I dreaming, or am I wide awake? Please pinch me!

On March 22, I met the new oncologist who works together with the team of my new surgeon.
I summarised the situation; he called my surgeon to discuss it with him; they decided to postpone the operation so that I could do another course of chemo because I had been without treatment for more than a month. He already informed me that after the surgery, I would still have to do chemo sessions.

March 24, 10th chemo – Carboplatin – and meeting with the surgeon to talk about the operation, the risks and possible complications, which stress me out a lot, the diet to follow before and the duration of the recovery, it will take place on April 20.

On Monday, April 19, I was hospitalised early in the afternoon, and PCR, blood and electrocardiogram and a new consultation with the anesthesiologist.

Surgery and Post-Op Experience

On April 20, they came to pick me up around 11 a.m. I was supposed to have an epidural, but ultimately, no. I stayed in the waiting room for 1 hour 30 minutes. The surgeon comes to see me. I am rather calm, and talking with him before the operation reassures me. I tell myself I am in good hands.

It must be 6 p.m., I barely wake up, and again, the surgeon is by my side to tell me that everything went well and that there were no complications; tears come to my eyes then I close them, still stunned by the anaesthesia.

The next day, I could shower, sit up, walk the halls, and go outside for a walk. The urinary catheter was removed the day after the operation, the first drain on Thursday and the second on Friday. The morphine pump was on Thursday.
A week of hospitalisation, a wonderful, empathetic, kind team and an admirable, friendly human surgeon!

Positive Prognosis and Continued Vigilance

Released on April 27, returning home was difficult, at least for the first two or three days. But then it got better and better.

On May 5, I made an appointment with an intern to check the scar. The surgeon came to see me and told me that based on the first exam, there would no longer be any active disease in my abdomen! I find it hard to believe, and I still have tears as I write it. Not that I have trouble believing the surgeon. I believe him willingly. But I don’t understand how could someone tell me 2 months before that I was not operable??!!

I am impatiently awaiting my next appointments with the surgeon and the oncologist to find out what is going on and what the next steps will be. We are still waiting for other returns from HPV analyses, particularly checks for genetics, to determine the treatments To establish.

I came across an exceptional CA125 ops team. Beyond their professionalism, their kindness touches me the most.

Don’t give up. If you doubt, fight and ask for a second or third opinion. Don’t hesitate—your life depends on it!