Totally unexpected diagnosis

[Marie1707]

No symptoms other than slight bloating. Eat well, sleep well and very active. No cancer in the family. Raised CA125 test so sent for ultrasounds - internal and external. Nothing found. CA125 retest revealed count over 1200. CT scan showed omentum cake from ovarian (or peritoneal) cancer. Confirmed as Grade 3c. Now about to start on chemotherapy and have agreed to take part in ICON2B trial and will have one drug in smaller doses weekly. So 3 courses of chemo followed by Debulking and total hysterectomy followed by a further 3 courses of chemo and Avastin every three weeks afterwards. Total treatment time 15 months,

This has all been such a horrendous shock. My husband went into a dementia nursing home two years ago and I was just getting my life back together.

I am ready and grateful to be having the treatment offered and feel reasonably positive about a good outcome. Going to keep as fit as possible and eat well too.

Friends have been wonderful as has my family. I have so much to be thankful for.

[Neona]

Welcome to this forum although I am sorry that you have to join us. My diagnosis was also very unexpected with hardly any symptoms and no history in tje family. I am on a clinical trial and wish you good luck with yours.

[Marie1707 in reply to Neona]

I am on the ICON8B trial and am due to have weekly chemo in addition to the 3 weekly ones. I hope that your trial is going well. It is very hard to get your head around such a diagnosis. I still wake each morning and have it hit me hard. I am keeping around positive people and friends are being marvellous. I almost feel a fraud at the moment as I feel pretty well. I guess this may well change once my chemo starts. However, I am trying to be optimistic and be thankful to be able to have such good treatment.

Thank you for replying to me. It is good to be able to support each other.

[GwenHP]

Marie, welcome to the group. Glad you found us. There is nothing like being able to talk with others who have walked in similar shoes. Just to share with you briefly, I'm a stage 3C high grade ovarian cancer survivor who was diagnosed in 2005, 13 years ago. May you have the good fortune to also be a long term survivor.

Best wishes,

Gwen

[Marie1707 in reply to GwenHP]

I’m very pleased to hear from you with your positive result. It is heartening to hear such good news. I start my chemo today so it is the first step on a long road but I am grateful that there is treatment available even though it may make me feel ill.

Best wishes

Marie

[GwenHP in reply to Marie1707]

We are here for you. :). As you have questions don’t hesitate to post. Let us know how you are doing.

[Marie1707]

First chemo underway. All good so far.

[Ryleebrown]

Marie, I’m so sorry to hear this.

I too am going through chemo again. This is the third time after I was diagnosed in 2009 with Ovarian Cancer 1C. After Debulking and then chemo for 5 months, I went for 8years with good scans, etc., then recurrence 1/17 thru 8/17. Off for 5 mos, then recurrence again. So frightening.

You are in my prayers.

[Wanthealth]

God Bless and (( HUGS )). You look great and have a positive attitude going into your treatment .... good luck starting your trial and upcoming surgeries !!! I also had diagnosis unexpectedly .. went in for bladder repair and routine hysterectomy... small spot in peritoneal then found source to be in one of my Fallopian tubes ... have had 3 chemo treatments so far will be having omentum removed 7/2 then 3 more rounds of chemo ... I too am very active ... eat well ... no family history .(genetics neg). So just trying to do the best I can ... take care of myself and stay positive keep active ... enjoy my family AND thank the good Lord I’m doing as well as I am🙏🏻

[Ibnikii]

Marie. You are the first person I have decided to convert with. I was just diagnosed with the exact same thing. Stage 3/4. Neither are good. My CA125 was 256.8. Started Chemo this past Wednesday, in the bad 3-4 day now. Very constipated. My plan for treatment is identical to yours. Please keep me updated on how you do. I was so glad to no longer feel alone in this.

[Marie1707 in reply to Ibnikii]

Hi - thank you so much for your message. It is very special to be in touch with someone going through the same treatment at the same time. My CA125 was 1028 which was pretty high.

I have my next chemo on Monday which is the weekly one. I have not been too constipated but felt very tired and a bit nauseous in the mornings. I find things improve as the day progresses. I've am keen to find out what to expect on a weekly basis so that I can perhaps make some plans for better days.

Where are you based? I am in Taunton Somerset UK.

[Ibnikii]

I am in Allentown, Pa USA. My CA125 was 256.8 and I was told stage 4. My treatment presently is Aggressive Chemo once ever 21 days. Then debunking and total hysterectomy. After recovery I will have another round of aggressive Chemo once every 21 days. It is so scary. The day after Chemo I was great, the second day I felt Like I had the flu. Muscles hurt and could not have a bowel movement. Today I just felt tired , sore and nauseous. I feel blessed to take his journey with you. Together we can stay strong.

[Marie1707]

We can certainly support each other. It is scary but we are not alone. Being on a trial I am having chemo weekly with One drug and three weekly with the other two. Three courses (9 weekly chemos and three 3-weekly chemos) , then surgery and then another three rounds of the same and then I will have Avastin 3-weekly which will then mean my treatment will take in total about 15 months. Quite a chunk to take out of my life but hopefully it will prove worthwhile. I have put my voluntary work on hold for the time being until I see how my weeks are, eg good days and bad days. I must admit this has taken over my life at the moment but I need to take back control as soon as I can plan my way forward. We need to keep doing as many normal things as possible.

Please keep in touch.

[Ibnikii]

Agreed. I was allowing it to have complete control. I may not return to work until Chemo is over because I run a childcare center and the germs. Small price to pay if it means I can enjoy years after treatments are done. But it is hard handing over everything and not knowing where all this will lead. I see more positive stories than negative so that is what I try to hold on to. Keep me updated as I will you.

[Marie1707 in reply to Ibnikii]

It is hard handing over to others but a small price to pay to come out of this with a wonderful positive result.

I was thoroughly enjoying my work with the Witness Service in the local courts supporting vulnerable witnesses. I hope to return to this but, the same as you, I need to avoid the risk of picking up infections. Fellow volunteers keep in touch, as do all my friends, neighbours and family. I feel as though I have paused my busy life for a while and have entered a totally new chapter. I will use this time to hopefully concentrate on a bit of drawing and painting which can be very engrossing.

Take care my new friend. x

[Hidden]

That happened to me, my family Doctor treated me , for 3 months for a UTI, then finally, he did an MRA and sent me to my OB, and all took place within a week with my oncologist. I am feeling fine now , just working on getting my breast recontructed.Good luck ,keep the faith it is just a journey to test our faith it will be ok.

[Catcher910]

Welcome to the group. My story is similar to yours. No family history, genetic testing negative, some abdominal pain was only symptom. Yes diagnosis tends to take over your life, which I do resent. I’ve had 4 chemo sessions with two more to go. Maybe clinical trial down the road but I really want a break from treatment. It’s been a very long summer. It would be nice to have hair again, too, although I know that’s a minor issue in the big picture. Rest as much as you can, accept all help. You don’t have to do it all, which has been hard for me to accept. Currently taking stool softener twice a day and have Miralax on standby, which really works well if constipation gets to be an issue. Take care and stay strong!