Terrified

[Terrified24-7]

Hi,

I'm Jane. It was discovered in November that I had a mass in my pelvis. Further tests showed bilateral ovarian cysts. I was sent to a wonderful surgeon who, upon exploratory laparotomy found that I also had tumors on my liver, diaphragm, bladder, and rectum. He thoroughly removed every trace he could find and declared me free of metastatic carcinoma, which he graded at stage III-B. There were, however cancer cells in the pelvic washings, which I just know are going to grab hold somewhere and start growing. The type of cancer I have is low-grade serous Carcinoma, which does not respond well to traditional chemotherapy so why do they bother? They're having better results with immunotherapy and a drug called selumetinib but I'm not certain if these are available to the general public. In the meantime, I'm 16 days post-op, still in pain, and dreading what is to come. I'm only 58 years old! I'm not ready to die! I obsessively read statistics on survival rates and don't like what I see. I'm so scared, I just don't know what to do!

[GwenHP]

Hi Terrified 24-7. When I was first diagnosed I too focused on the statistics. I figured I had a 17-20% chance of surviving 5 years. But then my Dad told me something that really helped. He reminded me that I was a sample of one. That statistics don't apply to individuals. I was going to go into remission, be cured, or whatever, independent of what the average of a thousand cases showed. In my mind, that helped me to realize I was going to be alive or dead after 5 years - not 17% alive and 83% dead. And why couldn't I be one of the ones in who was alive. I'm here to tell you this now as a 12 year survivor.

Something you might be interested in reading is an article written by Stephen Gould, "The Medium is not the Message". tinyurl.com/jzbvbja He too was diagnosed with a rare cancer with a very poor prognosis, and yet outlived expectations by 20 years before he succumbed to a totally unrelated disease.

[GwenHP in reply to GwenHP]

Correction. The above post is supposed to read, "Median", not Medium.

[Cropcrop]

Hi, firstly I'm so sorry to hear of your diagnosis, it's rubbish isn't it. We've all had similar experiences to a greater or lesser extent on here and I think we've possibly all felt like you feel at the moment.

What I would say is that You are not a statistic, you are an individual, and therefore unique, please try to stay away from statistics on the internet, they are so very out of date and therefore erroneous and some are just downright wrong and subsequently scare the pants off us unnecessarily. You are at a low point at the minute so you are vulnerable to bogus information.

There are people who have been given poor prognosis and exceeded them, there are fresh steps being taken all the time in treatment types and just because the 'stats' say your cancer doesn't respond well to traditional chemo doesn't mean yours won't, it has been shown that what works well for some doesn't for others and vice versa and maybe that is because we are all different.

Has your medical team told you that your type of cancer doesn't respond well or has this information been taken from the internet?

They bother to try so that hopefully one day we will all be given individual treatments to match us as individuals and cure us, in the meantime they keep trying and we try with them, once upon a time our disease was a death sentence and now that's not always true. Hopefully one day we will be able to be diagnosed much earlier when our doctors understand our symptoms of the disease better too and listen to us, more extensive training is required on this part me thinks.

I really hope you are soon able to focus on getting strong and taking this rubbish disease by the horns and show it who's boss. Try to find your positivity, it really really does help you get through all this

Sending big hugs of encouragement and lots of love ❤xx Jane

[Honrath]

Hi Jane. I'm Mary. I also went in for a lap and woke up from surgery exactly same as you. It's been 12 days post op for me. I'm also IIIb, only high grade serous. In 3 weeks I must decide on which course of chemo. I'm slightly older, 65, but I'm also so freaked out because I don't want to die. I think by obsessively searching the internet the more I get scared and don't know what to do. One thought is why do chemo and go through all the side effects for 8 extra months? I'm sorry I don't have any words of comfort right now for you but I'm on your side. Just knowing someone is out there going through similar issues, we could help each other. Just being able to talk about being scared and confused might help us find a way to get and stay positive. My heart goes out to you. Good luck hope the pain starts to get better. I know it will!!!! The angels are on your side. You're not finished here yet. 😇😇

[DSK-C SHARE Volunteer]

Hi Jane--very sorry to hear of your diagnosis. I am a four year survivor, high grade serous. I opted for the most aggressive chemo. I focused on the positive statistics despite reading all the grim news online. I believe staying positive is very important. Meditation for relaxation may help. Remember you are an individual, not a statistic. You can do it!

[Lizchips]

Terrified, I've been there. First stop reading the statistics they only run these for 5 yrs. I have stage 3c, I was diagnosed in 2014. I'm coming up on 3 yrs. Next month. I had a two lb mass, I named it Ripley to bring humor to it. It weighs 2 lbs. I had a complete hysterectomy at 51 yrs. I turn 54 this month. My cancer is clear cell ovarian cancer and it was attached to my colon and engulfed my appendix. I had 15 lymph nodes removed, cancer was in two. I've had a few surgeries I have had all my omentum removed. I had 18 rounds of chemo in 14 weeks. I did 8 rounds of stomach wash chemo. Not all Drs hospitals do this. It adds 18 months to 3 yrs onto time without reoccurring. Do research on stomach wash chemo. Not stays. Everyone is different. My doc says that if you are strong going in you are strong coming out. Best wishes for success. Liz