Got the cancer diagnosis

[Aleksa1121]

Hello everyone,

Last week I had my second laparoscopy, the endometriosis professor agreed to do it. She took many biopsy’s, including intestines. As a reminder- I had laparoscopy in February which couldn’t explain my symptoms, but my current doctor said that cancer could be microscopic back than. Anyway my diagnosis is clear cell, already spread everywhere but not in a form of tumors- more like a jelly. The cysts that where found on my liver on ct and ultrasound are probably mets (I know they are since I’ve been complaining about liver pain for over a month). Honestly it feels like dying now for a few weeks already and the pain is getting bigger. Now where does those metastasis come from if I don’t have the tumor- so as I already wrote last April I had a 8 cm cyst, which to my doctor looked like endometrioma and he decided to wait one month to see if it grows, and in may 2018 it disappeared. So like I thought- the cyst contained malignant cells in it and they were living in my stomach without any symptoms till February 2019. Later on, actually about one week ago I reminded myself, that in winter/spring 2018 I was doing laser hair removal of my bikini area, so the whole picture lookes like this now, that I was living with cancer for years and the laser ‘woke up’ the malignant cells. I had endometriosis many, many years and I’ve never thought I could get cancer from it. My current dr said I had 5% chances to get it- in a lifetime. If I would have known, I would never do the laser hair removal. I was risking my life, I will obviously die soon and change lives of many people, and my poor dogs.

Moreover I will be tested for paraneoplastic syndrome (blood test), because it lookes like doctors missed it in 2012 when I was at the hospital for neurological symptoms and general malaise. That would mean that those 7 years ago I had ovarian cancer (to small to detect) and my body was attacking it by secretion of cytokines, and from this I was having all weird symptoms. Crazy story.

My first advice for all women is to stay away from laser hair removal, because you never know if you have cancer inside of you. The second advice is to look for answers if you don’t feel right. I felt on and off sick for years (never had any gynecological symptoms though) and no doctor (I had 7 neurologists, 2 hematologists, 1 oncologist, and 2 stays at the hospital for neurological symptoms) offered me a blood test for paraneoplastic antibodys, I guess because no one suspected me to have cancer back then (2012). That means my ovarian cancer could have been discovered in 2012 and maybe I would die from something else

Greetings to all of you, and I hope maybe one day this what I wrote here will help someone to find the answers.

[Lindaura]

Dear Aleksa,

Your story is a sad one, but not an unfamiliar one.

You are probably right about that cyst rupturing and spreading cancer cells throughout your pelvis.

But please understand that your use of the laser hair removal system had nothing to do with your cancer.

Most likely it has been developing for some time.

Unfortunately, the CA-125 test is not usually a good marker for Clear Cell.

I hope your treatment options work for you and you continue to fight on.@

Meanwhile here is some info gleaned right here from the Ovacome website:

“Clear cell cancer may also occur more commonly in women with a history of endometriosis.

How is it treated?

The first treatment is the same as for the common form of epithelial ovarian cancer – a total abdominal hysterectomy and bilateral salpingo-oophorectomy.and omentectomy (removal of the ovaries, fallopian tubes, uterus (womb) and omentum). In some circumstances removal of the lymph glands in the pelvis and back of the abdomen may also be included.

As well as removing the pelvic organs fluid will be collected from the abdomen for testing for any cancer cells. A pathologist will examine the tissue and fluid removed to decide how advanced the cancer is.

Some tumours are confined to the ovary and so will have a better prognosis; about 20 per cent (one in five) are stage 1. However, in some cases, tumours will have spread through the outer lining (capsule) of the ovary and to other organs including the uterus (womb), fallopian tubes, the lymph glands and the omentum.

Usually post-operative treatment involves chemotherapy (drug therapy). The standard chemotherapy for ovarian cancer is to use two drugs called carboplatin and paclitaxel (Taxol). There is research being carried out into whether other drugs may be as or more effective in treating clear cell cancers.

Recent research from Canada suggests that radiation therapy is effective at protecting against recurrence. It also suggests that lntra-peritoneal chemotherapy may be an effective treatment. This has not been accepted into routine clinical practice, but you could discuss it with your consultant.”

Hope this helps,

Laura

PS: try to trust in your new Oncology team, but do consider lntra-peritoneal chemotherapy, called Hipec treatment.

Best wishes

Laura

[Aleksa1121 in reply to Lindaura]

Thank you Laura, and Lyndy. I don’t have this cancerous cyst anymore, I don’t think they will operate on me, because my cancer didn’t spread in form of tumors. I have a doctor appointment in Wednesday and we will see. Since clear cell is often Chemo resistant I will have to make a decision if I want to have it.

I don’t know how come I never heard all those years about cancer coming from endometriosis, partly it’s my fault (although I was seeing my doctor every 9 months), and partly my doctors who had obviously no idea.

Laser hair removal didn’t cause cancer, that’s true- but it certainly irritated the cancer cells. So till the end I will blame myself for that unfortunately. But that’s life I guess.

Thank you all for help and possibility to take it off my chest.

[Lyndy]

Hi Aleksa

A great reply from Laura - sending you a hug. xx

[Trathi]

Hi Aleska, I am so sorry you have received the news you were dreading, but at least they know what they are dealing with now.

I think we have all gone through delays in treatment classing pains as IBS, Diverticulitis etc etc, and leaving things. I actually had quite a large lump coming outside my body low down and was told it was a hernia, so I could have been treated years before I was and if you ask everyone I guess they will say the same.

I was also told at one point it looked as though it was in my liver, but this turned out to be a haemoangioma but I did have tumours along my diaphragm which were removed under surgery while having debulking.

I hope they have a plan of care implemented for you. I guess what I am trying to say to you is do not loose hope, they now know what is wrong with you and can commence treatment. I know you have been through a lot but you have the strength to go through what is coming your way. We are all here for you, stay strong and positive.

Sending you lots of love 💕 hugs 🤗 and positivity

Tracy xx

[Aleksa1121]

Hi Tracy and thank you for your answer. You are right, (almost) everyone has had some delays before diagnosis and it’s really sad. I try not to loose hope, though I’m realistic and my doctor is not a magician. The worst part of this is looking at family suffering, I saw my parents crying for the first time today and totally lost it. It broke my heart.

Wishing you lots of health Tracy