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I have just joined as I am looking for information and support. I was diagnosed with having stage 1c mucinous ovarian cancer in February this year.
After suffering in 2016 I finally got a scan in February 2017 and the hospital found a 7cm mass that they inisisted was an endometrioma and nothing sinister. I was put on Prostap injections for 8 months which I reacted badly to and I have other problems and hospital delays so it wasn't removed until earlier this year.
I had insisted on an mri to check the mass before surgery and it was then 13cm with solids and fluid content so they operated and removed the mass, my right ovary and fallopian tube.
I then developed necrosis on my lower abdomen and just before the surgeon cut a large part of my abdomen off they told me I had cancer.
I have had a colonoscopy and gastroscopy since which are clear. The washings from the surgery are clear. They have said the mass showed no cancer on the surface but was borderline inside with a malignant mass at the centre.
I have now been given two options, to monitor me for any future growths in my pelvis or abdomen or to have carboplatin only chemotherapy and monitoring.
I know carboplatin is not very effective for this type of cancer and would affect my other health issues. But I'm scared that if I'm only monitored any further cancer may be missed or will grow where it is untreatable.
I need advise on the effectiveness of the carboplatin or any other options that may help.
Any and all help is greatly appreciated as I am so confused and feel like I can't trust my doctor or the hospital.
Thanks for getting in touch. You have been certainly been through the mill in the past 3 years.
A mucinous ovarian cancer is a rare type of an epithelial ovarian cancer. In the UK, doctors follow the European Society for Medical Oncology (ESMO) guidelines for planning treatment and follow up.
Within these guidelines under the section adjuvant chemotherapy for early stage disease they state the following in relation to the use of carboplatin on its own compared to carboplatin with paclitaxel:
“Some clinicians feel that separating the choice of treatment between FIGO stage IC and stage II–IV is artificial, and therefore, choose to offer combination chemotherapy to women with stage IC. However, evidence of a benefit of combination therapy in this group is lacking; therefore, it is reasonable to consider single-agent carboplatin to all women with intermediate and high-risk stage I disease”.
They also mention that those women who had a platinum based chemotherapy e.g. carboplatin had better outcomes.
When faced with treatment options it’s difficult to make the right choice. You have been through a hard time getting a diagnosis and all the complications from surgery.
And making a treatment decision has to be based on what you think you can cope with in the here and now. Chemotherapy does have side-effects that vary from person to person and the team will take in to account your other health worries. They will also keep an eye on you and give advice on how to manage any side effects.
Often the psychological impact of not having active treatment can feel good for some people but for others it can feel too scary, so they opt for chemotherapy. If you opt for monitoring knowing that your team is at the end of the phone can be reassuring. So, you can contact them if you start to develop new symptoms.
Perhaps looking for support in the ovarian cancer group may help you decide what you want to do.
If you want to chat with one of the nurses, then just give us a call on the Macmillan Support Line.
Best wishes and take care
Lorraine -Macmillan Information Nurse Specialist
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