Hi I’m Maggie

I am 66 yrs old Mom to 4 girls and a husband with dementia. I finally decided to introduce myself. I started feeling sick about 8 weeks ago. Went to see my GP. I was having bloating , diarrhea, felt full all the time, lost 10 lbs and a lot of pain in belly back and pelvic area. Me and my doc thought I might have diverticulitis. She did a ct scan and when I went back to see her she had a funny look on her. She says you do have a bit of diverticulitis but nothing to worry about. HOWEVER, the scan shows growths on both ovaries and it looks like you have Ovarian Cancer!!! Some series carcinoma.
I was by myself and just thrown for such a loop. I was devastated! So she sent me in a week to see Dr Monique Bertrand at London health care center.. her intern told me I would have a full hysterectomy and then some chemo. She reviewed with me that the cancer may not have started in ovaries but somewhere else!! Then she
Did a complete internal exam was looking for a tennis ball growth!! She couldn’t find it or any growths! So now she’s telling me I may NOT have ovarian cancer but will draw blood markers to see. I was an emotional wreck when I left!
Monday the CA125 marker was 1111 so now they are doing anMRI SEP 8. So that’s my story so far!! So glad to have this great group.. HE

Comments

  • Oh my goodness @maggieb your head must be spinning!  But your story is not unusual. Diagnosing OVC can be tricky at the best of times and with the best medical professionals.  I had a tumour on my right ovary the size of a huge grapefruit, yet over the years it took to grow, my GP never felt it when examining me nor did I ever feel anything myself. Add to that the CA125 is not a very reliable indicator for us. The results can be very volatile and reactive to all manner of things going on in your system that have nothing to do with cancer.  Nor does the score relate, if you do have tumours, to the size of the tumours. My CA 125 was only 900 with a tumour the size of mine, yet in recurrence my CA has been as high as 8000 but my tumours less than a millimeter in size. Go figure, eh?  And finally the CT can sometimes be confusing.  When I had my cancer surgery they expected me to be riddled with tumours beyond the primary big one and so much that they had me all marked up to have part of my colon removed. Yet when they opened me up there was just the one primary tumour on the right ovary and a very small one of the left ovary. Significantly less than expected.

    So what I'm saying is to let the tests play out and paint a more accurate picture of what's going on and from that discuss treatment options with your oncologist.   But in the meantime, a few suggestions since it's important to know what questions to ask when you meet with her again after the MRI.  If you haven't already go to the Ovarian Cancer Canada website. https://ovariancanada.org  It's chock full of information on this disease. And even though you still don't know if you have OVC, order their booklet By Your Side. It is  a guide for the newly diagnosed and has a lot of information that might help you build a list of questions to ask.  The booklet comes in both hard and soft copy and you can order it at https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources

    Hope this helps for now...hope, more so, it's not cancer after all.  But if it is, I'm glad you found us and I want you to know we are here for you; to share our stories, provide some encouragement, help celebrate the good news, and be a shoulder to lean on when you need one.  Please keep us posted and reach out any time you feel the need.
     <3 
  •  fearless, It’s good to know you went through similar problems getting diagnosed. Thanks for sharing your story with me. I am so glad I have found this site. It’s a wealth of good information. I did order the book you recommended and can’t wait to get it. Looks like a good resource for me. My thoughts get frazzled and with this book I can keep track of everything. Thanks again for responding to me and I will keep you informed of my journey 
    Maggie ❤️
  • @maggieb. Welcome and thank you for introducing yourself.  The diagnosing and wait is the hardest part!  Once they help you decide on treatment, its straightforward.  I was stressed that  I would have to make lots of decisions  about what we would do next, but it turned the oncologist kept me on the right track.  After all,  who am I to second guess a trained specialist.  Thats not to say I didnt ask lots and lots of question.  
    I do not have ovarian cancer.  My ovaries where just "bulky". My CA124 500. bloating and pain and weight loss.   My tumour was in the peritoneal and small, but because of this, it took longer to get a diagnosis.   
    When I was diagnosed a cancer friend recommend a journal.  I wrote all my questions down  and the date for reference. Leave space for answers.  Also I taped every conversation with the doctors.   It's amazing what you hear the second time.   I hope that you will join us on thursday for live teal chats.   gayle
  • Hi @gaylestorm Thankyou for responding to me! It is great to hear other stories of how they get diagnosed. A journal is a really good idea and taping doctor. Sometimes you think you absorb all of it and realize when you get home it’s not the same as what my girlfriend heard or my daughter!! I have my MRI on Wednesday so hopefully will give me some answers 😊 Thanks for responding to me. I am so glad I found this forum. I will try to remember the liveTeal chat on Thursday. Take care❤️
  • @maggieb Good luck with the MRI today.  Hope it goes smoothly for you. I just had two, one for my lower back and one for my pelvic region to see if a tumor I have that's pressing on the psoas muscle was the cause of some mobility issues I had been having.  Not sure if you're claustrophobic...I am actually...but found just closing my eyes, imagining I was on a beach somewhere, and counting down the time in my head helped me through it.  In fact over in no time and the worst part was the awful selection of music coming through the headphones they put on me to block out the noise.  

    That said, the MRI was more extensive than the usual CT so I was tense waiting on results, either that the existing tumors I had progressed more than we expected or they found new growth that hadn't shown up in the CTs.  But, actually got the opposite news...one tumor was still totally stable and the other was continuing to shrink even though I've been out of chemo almost two months now...and nothing new to report. Along with that was the assumption the one tumor was not likely the cause of the mobility issue since it's stable and so tiny..so guess my problem is just good old, old age creeping in!

    Yes we'd love to have you join us tomorrow on our regular Teal Thursday.  We start at 1pm EST and just chat about anything and everything.  Just sign in  to OVdialogue as usual and click on the Teal Thursday discussion thread to enter the chat.  

    Here's to a good outcome from today's procedure!
    Kath
  • Hi Cath, thankyou for remembering my MRI. It went well other than the noise! They gave me headphones but no music on them! I’m not claustrophobic but boy oh boy you could easily become so if you spent much time in there! So happy to hear you got good news from yours. 🎉 Now I just have to wait for my news. It’s awful waiting!! I will really try and join chat tomorrow. Take care, Maggie 
  • I forgot to say I got the By You Side book today. From what I’ve seen so far it’s a wonderful resource!! Thanks to ovarian Canada.org!!!

  • Hi everybody. Just thought that I’d update you as to what’s been going on in my world. Had my MRI on Sept 8 and have been waiting since to hear from onc/surgeon. She finally called today after 2 cancellations. I’m happy to say I have a much higher opinion of her now! She was calm, slow, took her time, even tho I kept interrupting her🤣 she say we’ll get to that. Unfortunately the MRI does confirm that I do have ovarian cancer. 2 largishtumours one on each and cysts on my uterus and some fluid. She is also worried about my colon. SO in 2 weeks I see her in London and then have colonoscopy and have surgery on pelvic area etc end of this month!! So I know a lot more than last time I spoke to you all! Hope everyone is doing as well as can be expected 🙏 Maggie 
  • kastoyleskastoyles ✭✭✭
    @maggieb - wow, that's a lot to take during one phone call, but I'm so glad you have answers and are moving forward with testing and surgery. Please keep us posted on your progress! <3
  • Thankyou @kastoyles yes the more I think about it the more I’m like wow that was a lot to digest!!
  • @maggieb I'm so glad you thought to update us. So sorry it took so long again to get the read out from your scans but wonderful your oncologist made up for it with time and detail and patience. It sounds like you''ve found a good match with her and now there's a treatment plan in place....all I can say about that is how relieved I was once I knew there was a plan.

    I do hope the colonoscopy doesn't show any involvement of the colon. It would be much easier to have less to contend with. But it's not unusual that that is the case. At least with the colonoscopy they'll know pretty well what they'll have to deal with when it comes time for you surgery.  I didn't have the benefit of a colonoscopy. My CT seemed to indicate the presence of the cancer in my colon or on my colon so when they prepped me for surgery they even marked the area where the ostomy bag would attach temporarily. But surprise, when they got in there there was far less cancer than the CT indicated and nothing on my colon after all !   So nothing with this disease ever seems a given.  I'll just hope you're pleasantly surprised, as many of us have been.

    Please do continue to keep us posted.  Keep that By Your Side handy.  (PS: nice picture. Love to put faces to names when we can)

     In the meantime you're in our thoughts........
     <3 


  • Thanks Kath for your response! Sorry my picture is so big. Didn’t know what I was doing 😂 I now have a date for my colonoscopy Oct 25 so things are really moving quickly now! Thankyou all for your support! When my head is spinning late at night I come on here and read all the stories. It really helps. Good luck to everyone with your journey. Love Maggie ❤️
  • @maggieb Good luck on the 25th. Yes, all that waiting has now paid off. Things will move quickly now so be prepared for the whirlwind, lots of attention and lots of care.  Keep us posted. Our thoughts will be with you.
     <3 
  • Thankyou so much Cath. I just got a call this morning that my colonoscopy has been moved to next Tuesday! So things sure are moving! How is pain in your back?
Sign In or Register to comment.