Looking for advice.

[Carolshelton65]

Hello, My name is Carol and on March 6th, I was diagnosed with stage 3 high grade serous carcinoma believed to originate from ovaries. I have a wonderful gynecologist oncologist and will be receiving my 6th chemo in two weeks and preparing for debulking surgery.

My initial CA-125 prior to first chemo was 11,600! During my research I have found that is an insane number. Prior to my 5th treatment it was down to 1202.

Does anyone have any experience with this type of cancer and surgery?

What can I expect....any help would be greatly appreciated.

[caf132]

Hi Carol- many of us have great experience in this and are very willing to help and give support.

I also had OC. Stage 3. I had surgery right away for s large ovarian tumor that I found. I had the full cut and was properly gutted and left without ovaries Fallopian tubes, uterus, appendix, omentum and a few lymph nodes. I had the full 28 chemo after surgery. I made it through with a few bumps in the road. You can do this. After surgery they will do a pathology on the tumor and stage it and tell you what kind of cancer it is. This will guide your treatment plan.

Please stay off of google. Those stats are old and scary. There are many of us out here that high ca125 or low ca125. We all react differently but s high number does not translate to poor outcome. I am 20 months post chemo. All my hair grew back and I am doing well

Please keep us posted and please vent if you need to as we all have.

Xx Carol

[Carolshelton65 in reply to caf132]

Thank you for responding so quickly. I have tried to find local support groups, but they are all for breast cancer patients.

I am a nurse, so trying to stop researching is virtually impossible. Can u tell me about the surgery? How long before u could get up and move around? Any complications? Will I require any special equipment once I get home? I know he will remove my ovaries/tubes, omentum and part of my peritoneal membranes. (Had partial hys 2011). He will see what else is damaged once he gets in there.

I am asking these questions because I am the caregiver of my 86yo mother with dementia and need to prepare for her care while I am “down”. I am 52. Prior to this, overweight, but rather active and healthy and had always healed well post-op. I am not sure about the healing now that the chemo has taken me down some notches.

[Annamariew in reply to Carolshelton65]

By the time I got out of the hospital I didn’t need help I was just tired. Although I didn’t do chemo first so that may add to the exhaustion. I would definitely have help for the first week or two home.

[caf132 in reply to Carolshelton65]

Remember we are here for you/ your support group. I just wanted that tumor out of me ! I had surgery to remove a 21+ cm tumor. I had the full cut Bc they did not want it to rupture but it already had. I was up and walking he might after surgery. I was in hospital a week Bc it was a big surgery I had a hard time after surgery with padding had as they really pump you up. Had a drain and cath tube that was taken out the next day. They really want you up and moving. The nurses were great.

Make sure you have a pillow for ride home and after. It makes getting up and down off of couch/ bed much easier or if you sneeze. Hold it tight to your abdomen.

Healing is not too bad. They want you to start chemo about 10-15 days later. Constipation was always a problem for me.

Are you in the states? PM me if you want. Please don’t be afraid to ask anything. Nothing is off limits with us gals. Hope this helps.

Xx carol

[Carolshelton65 in reply to caf132]

I am near Memphis, TN. So far, I know that he will remove my ovaries, says there is what seems to be a large cluster of tumors on it, but difficult to identify due to remaining ascities. Also will take tubes and omentum and may take parts of any organs that may have damage to their linings...that’s the part that concerns me. I like to prepare for the worst and be pleasantly surprised later.😑

[Jules_PPC in reply to caf132]

Hi Carol,

I was diagnosed 11/18/2016 with PPC 3C high grade adeno carcinoma. My CA 125 at the beginning was almost 6,000. And after my third chemo treatment I was back down in normal range at 27. I believe the supplements I’ve been on worked with the chemo to help achieve those numbers. I’m happy to discuss them if you’re interested.

Like you, I had all six of my frontline chemo before I had my debulking surgery.

Mine was done laparoscopically, using the DaVinci robotic machine. How is your surgery going to be done?

I’m not sure where you are located, so I’m not sure if it’s available where you are. But I was able to resume normal activity in two weeks, within reason of course, no running marathons or anything crazy, and no lifting over 5 lbs. for a few weeks.

I wish you the best in this journey that we here are all traversing, stay strong and fight on.

Jules

[Carolshelton65 in reply to Jules_PPC]

My surgery will be open. I know he will remove my entire omentum, ovaries and tubes and anything else that he sees needs to go once he is in there.

Your success helps give me hope...thank you!

[Neona]

I was told " you will be able to look after yourself when you get home but you won't want to be looking after someone else". This was good advice. I spent 12 days in hospital as I had a couple of complications. I healed quickly but I think the chemo may slow you down a bit - I had a dog bite in the middle of my chemo and it was a bit slow healing. Wishing you goid luck with your surgery.

[Cjbloomq]

Hi Carolshelton65, I had same type of cancer,since 2013. started with chemo,then total hysterectomy,with removal of a section on colon. Then back on chemo. The surgery was successful.In hospital for 10 days,great care. They had me up next day,walking every day. Showed me how to get out of bed,even though you are in pain. Got home and just rest,move around some.Had friends help with cooking.Took about 6 weeks to recover,everyone is different.

Best of luck to you and keep positive. Any other questions,ask.

Caroline

[Welshandproud]

Hi Carol. I also have 3c high grade serous OC. I was diagnosed in September 2016 with a ca125 count of 9600 which then went up to 10400 just after my 1st chemo. I too was shocked by these high levels and have not met many people with such high scores but I was told that the high number is not something to be too worried about and that high grade serous tend to give higher numbers. I finished chemo in April 2017 and thankfully I am now in stable disease mode and my last Ca125 score was 23. Just concentrate on keeping yourself well during your treatment, try to ignore the numbers and plan some trips for when the treatment is over. Sending a large but gentle hug xx

[Carolshelton65 in reply to Welshandproud]

Thank you so much for replying. It is true...the huge ca125 number had me freaking out. I am so glad that you are doing well and I hope that you stay well.

I am happy that prior to my 5th chemo, the number went down to 1202 and am hoping to see it at normal by the time of surgery. Did you have any surgery post chemo?

Also, what does stable disease mode mean? Are u in a maintenance drug?

How often and what type of tests/scans do you get?

What has your doctor said about percentage of chance of recurrence?

I am sorry to ask so many questions, I am a little OCD...😊