In waiting limbo to see if have cancer

Hello Viv (VivD ) 

I am Brian one of the Community Champions here on the online Community. I have just noticed your post has gone unanswered. I can't answer it myself having a very different cancer, however by me replying your post will be "bumped up" to the top of the page and I hope seen and answered by other members of the Ovarian cancer group.

I wish you well with your results - when they get before the MDT meeting.

Best wishes - Brian.

Thanks Brian

Hi, I’m sorry you find yourself here. The waiting for results is definitely the hardest to get through, the not knowing is horrible. I know it’s easier said than done, but try to stay in the present not think too far ahead, you don’t know yet if it’s cancer and if it is ovarian cancer there will be a plan for sure. I was diagnosed with advanced ovarian cancer Jan 24, the frontline treatment was tough but doable, and I’m doing ok. The shock of cancer is so overwhelming, be kind to yourself. 

Thank you very much! I've been happier for the last week, so just seeing what happens now. And of course hoping to get news soon, preferably this week, but it may be the week after too. Wishing you all the best. Kind regards.

I too had very little in the way of symptoms, very high CA125 & was diagnosed with stage 4 ovarian cancer in January after scans and biopsies, & yes the waiting is definitely the worst.  I had 5 rounds of chemo, which I tolerated quite well and  then a laparoscopy to see if I was suitable for surgery.  As I am 78 and my CA125 had dropped markedly after the chemo, I felt the operation was too long and risky - the surgeon too said the benefits didn't really outweigh the disadvantages so have had a 6th chemo and now waiting to start Bevacizumab to keep it suppressed. I'm feeling well now,.  I do hope you get to know the results soon, such a relief knowing one way or another, and if it is shown to be ovarian cancer,  treatment even for stage 4 as I have,  is very good and new drugs are being found all the time.   Just don't worry too much about the future - one day at a time is sufficient.   I do wish you all the best, keep us updated and if I can help in any way let me know. 

Thank you Patchwork for such an encouraging post. Wishing you all the best best too. Thank you very much.

I got a phone call today from the hospital. My case was finally considered this morning at the local gynaecology cancer multidisciplinary team, and there is a plan decided. I'll find out full details in the hospital clinic on Monday. This is such a relief, to know there's a plan now, and things are moving forward. It will definitely involve surgery, the nurse said, but I'll find out more on Monday. Meanwhile I can relax, and am just very relieved. Whatever things turn out to be, there is finally a plan, and progress. I feel like I've received a big present today! Best wishes all.

Hi Viv, I just wanted to send you a message of encouragement. Its so very difficult going through all the tests and scans and the not knowing. But all will be revealed in time and maybe not for certain until after surgery, if that takes place, so there could be a lot more limbo ahead, alongside recovery from surgery. I understand myself how frustrating people's comments are.  In the meantime, please try to take things one day at a time, focus on just whatever is immediately in front of you - ie the next meeting outcome, or the next test. Its all a process and one that's very much out of our control. I found that once I knew what I was dealing with, it became slightly more manageable. You fall into the process of treatment and all that that brings. And life still goes on around you, even as we sit right at the centre of the devastation. My cat still needed to go to the vet, my daughter who I care for, still needed taking to her day activity. We adjust to each change as it comes. Just be gentle with yourself. Its a huge deal in your life what you are going through right now. I have found that most people around me dont get it, they want to wish you well and get on with their lives. They don't realise that you are stuck in this ever turning wheel of turmoil, hospital visits, pain, discomfort and emotional upheaval. It can be a very lonely place. Reach out to the cancer community, nurture the friendships that genuinely care, cull the rest. That's been my experience over the past 6 months since finding a mass to having a full hysterectomy and then discovering it was malignant, and starting chemo shortly after. Its been  a whirlwind. Life will never be the same again and yet in a lot if ways, it still is. Im sending you a huge hug filled with love and encouragement. Please come back and tell us the outcome when you know xxx

Thank you very much for the very kind words. Wishing you all the best in return. {{Hug}}

Saw the gynaecologist/surgeon for "the plan", after my case was considered at the MDT last week.

She wants to do a full hysterectomy by keyhole surgery, assuming an anaesthetist thinks I'm fit enough for it (I am extremely hefty, and severely immunosuppressed as well). She's not willing to do open surgery unless forced to change track mid laparoscopy ...

My organs are all fused together down there, which makes it extra complex. It could be a case of endometriosis + benign cyst, or cancer, or endo+cancer. They won't know until 4-6 weeks after the operation. There is no sign of further disease spread or anything outside the pelvic area.

If they decide they can't risk the operation there is a backup plan - or plans even - in place.

So overall I'm happy. And crossing fingers for a good outcome from the anaesthetist!