Confused and scared

[Cath63]

Hi I've just been diagnosed with endometriod ovarian cancer stage 1 grade 2 c , I had a abdominal full hystorectomy 4 weeks ago , and to be honest I feel fine , went back to see gyno and was told that the large tumour on my ovary was benign but inside it was also a endometriod tumour and during the removal it was leaking so have now been told I need to have some chemo , I'm seeing the oncologist next week to find out exactly what medication and length of time I'll need treated , I just feel as though , is this really happening to me , I can't take it in , And as my doctor said someone was watching over me as I went to him originally with a bleed ( period it felt like to me ) but only because I've been through the change and not had any bleeding for 4 yrs , that's when he found the cyst , he's explained if I hadn't seen him when I did them months down the line it would have been a different story ! Stage etc , I know I should be thankful with the result , but I'm terrified incase after chemo it might come back .

[Simplicity1]

It is perfectly natural to be scared and feeling surreal but they are just making sure any random cancer cells are targeted. Chemo is rough but better than chancing the cancer coming back. Stay positive and chase the pain. Be thankful it was caught early. Keep us posted. Will be praying.

[Cath63 in reply to Simplicity1]

Thanks so much , I feel better now hearing someone else's view , to be honest I haven't spoke about my feelings to my family , I feel they're worrying enough as it is , and yes I should be thankful with my result , thanks again for your support x

[rppizio]

Everything you are feeling is very normal. It also sounds like things were caught very early and if you have any questions, a possible 2nd opinion would n't hurt if that would give you some peace of mind.

[Simplicity1 in reply to rppizio]

Keep in touch. So many questions and emotions.

[acostello]

Hi Cath63,

I'm 33 years old and I was diagnosed with endometriod ovarian cancer stage 1C grade 1, 10 weeks ago. Sounds very close to the same diagnosis. I had a 12 CM cyst on my ovary and the only symptom I had was heavy periods. The cyst wasn't even found for that reason. I was having sciatica pain so I went for an MRI and they saw the cyst, and encouraged me to see my ObGYN who then sent me for a CA125. Results were 409. I was referred to an oncologist who removed the cyst laparoscopic. While removing the cyst she broke it open. I was told it had borderline cells but nothing to worry about. They sent the pieces through pathology and I got a call a week later that we had to do an emergency hysterectomy. They did a full hysterectomy including removal of 25 lymph nodes. They found one microcell that was 1milimeter on my omentum they removed. Since the cyst was broke during surgery they told me I needed to do chemo. My oncologist who specializes in cancer of the pelvis did a meeting with 6 other oncologist and they all determined 3 rounds of chemo would be sufficient. The "gold standard is 6 rounds of carbo/taxol". I was concerned about the neuropathy and hair loss of the chemo. My oncologist provided research to me showing that taxol was the agent that causes the hair loss and neuropathy. The studies show that adding the taxol to the carbo has only increased the time between a reoccurrence by 30-45 days. I chose to only do the carbo with no taxol. I don't know if this will be an option for you or not but I was glad it was presented to me. I just finished my last round of chemo on Friday of this past week. Hair shedding but no loss and no neuropathy. I was able to schedule my treatments once every 3 weeks on a Friday afternoon so I only had to miss a few hours of work. I tolerated it well from what I can tell. I would receive the treatment on Friday and not be sick at all because of the dex which is a steroid they add to the IV. (During first chemo treatment I was given a depo provera shot to reduce my estrogen, which is what I was told caused the cancer). I would come home Friday tired and go to sleep. Initially I was taking zofran for nausea. Saturday, Sunday, I felt fine tad nauseated but no big deal. Would just lay in bed and watch tv. Monday I would go back to work and it would be a rough day but almost like a hangover feeling. Little nauseous, sweaty, clammy, and tired but would get through the day each time. Of course still taking zofran for anti nausea. By Monday afternoon I would be so constipated that's all I could think of. Taking stool softners daily didn't help at all. It forced me to push more than I should have causing me to be concerned about my bladder being pushed down. Monday I could barely use the bathroom. Tuesday I would just feel a bit exhausted at work and still battled the constipation. By Wednesday each time I was using the restroom again and back to myself. It was exact same the first 2 treatments. My last treatment was 100% the same as the first 2 other than me deciding no Zofran. I felt I had to pick which was worse a sour tummy or being constipated. I wish I would have skipped the zofran the first 2 treatments and picked the sour belly. It was a better experience this time. It just felt like a pretty bad tummy ache until 10am then a sour tummy the remainder of the day from Friday until Wednesday. I'm now on track to do a petscan once every 3 months now. My CA 125 was 409 before surgery, 125 after surgery, 25 after my first chemo treatment, and 17 after 2nd chemo treatment. I need to have another taken since I had my last round of chemo.

My oncologist has 2 other women that she has treated with the same diagnosis. One has made it 5 years with no reoccurrences and the other had a 3 year old daughter when she was diagnosed and her daughter just graduated this year. She says this diagnosis is the best possible outcome for prognosis and I hope I am a statistic for the best outcome like the others. It's very scary. I find myself having scary dreams that the cancer has come back and spread to my lungs, etc.

My hysterectomy has went well and I don't feel that I've skipped a beat as far as the feeling of my body goes.

I hope my story helps you as all I wanted was to find someone with my same or similar diagnosis and to hear their story, but I was never able to find anyone.

Can I ask how old you are? Also, can you share which treatment plan you choose with your oncologist, when you do?

Amy

[Cath63 in reply to acostello]

Hi thanks so much for sharing that with me I really appreciate it , I was exactly the same as yourself trying to find someone with my exact results , im 54 and went through the menopause around 4 yrs ago , and hadn't had a bleed for that length of time , so when this all started that's what made me go to my gp , I had a bleed that was just like a period and she said 100% this is not normal , I was referred to a gynocologist , he did a transvaginal scan and it showed up a large cyst 12cm on my right ovary , he said I needed a hystorectomy , also had ct. scan and that only showed up what he already knew , also CA125 which came back at 124 , had operation and biopsy result came back large cyst benign but inside it was a cancer cyst (endrometiod cancer) which he said normally grows in the lining of the womb , but still classed as ovarian cancer and because it was leaking that's why I need chemo , I've not seen my oncologist yet , my appointment is on 6 th July so I'll know more then and I'll let you know xx

[Cath63 in reply to Cath63]

Hi thanks so much for sharing that with me I really appreciate it , I was exactly the same as yourself trying to find someone with my exact results , im 54 and went through the menopause around 4 yrs ago , and hadn't had a bleed for that length of time , so when this all started that's what made me go to my gp , I had a bleed that was just like a period and she said 100% this is not normal , I was referred to a gynocologist , he did a transvaginal scan and it showed up a large cyst 12cm on my right ovary , he said I needed a hystorectomy , also had ct. scan and that only showed up what he already knew , also CA125 which came back at 124 , had operation and biopsy result came back large cyst benign but inside it was a cancer cyst (endrometiod cancer) which he said normally grows in the lining of the womb , but still classed as ovarian cancer and because it was leaking that's why I need chemo , I've not seen my oncologist yet , my appointment is on 6 th July so I'll know more then and I'll let you know xx

Reply

[acostello in reply to Cath63]

I hope they get it taken care of for you and the chemo isn't too hard on you. I know the lady my OBGYN said has made it 15 years without reoccurrence was in her 40s. So I hope we both have great outcomes like she did.