update on my journey

Well I posted back in August/September  when I had pmb and a scan showed 22mm endometrium thickness and ovarian cyst . 

I had my appointment at the hospital and they think it could be a polyp , they are not sure , but my CA125 was normal at 15. 

I am going in hosptial on Monday for it removed , that has been a huge step for me as I am petrified of medications and procedures, I am so worried about the results though , the waiting will be agony . I have been bleeding on and off since August , I refused surgery  until two weeks ago when I just thought , just go for it get it sorted , but the biopsy scares me , as I don't want a hysterectomy I want to keep my womb . 

I don't know what anyone can say , but it just seems to help to be able to share .

 

The first referral letter scared me it said 'cancer pathway' YES , the second letter said 'CANCER PATHWAY' NO, is this because my CA125 was normal ? 

 

thanks in advance .

 

It was cancer and its now been removed , this journey is torturous mentally and physically .

  • I'm partly in a similar situation to you with a thickened womb lining, ovarian cysts and a nomal CA125, though in my case the suspected polyp turned out to be fibroids. I have had polyps removed in the past and I think its pretty standard procedure to test what they remove and biposy . I think when the CA125 is normal, removal of the polyps is more about sorting out your symptoms/stopping the bleeding and making you feel normal again rather than a concern for possible cancer. The tests are just to be absolutely sure.  I hope all goes well for you on Monday - I've got another few weeks to wait for my surgery. 

  • Hello Welliybob and thanks for posting, 

    I am pleased you have found the nerve to agree to getting this sorted out.   

    If the first referral was because ovarian cancer was a possibility, then I think it would have been the CA125 which together with the ultrasound scan results would have changed the status of the referral. 

    Waiting for results is seldom easy, but hopefully everything will turn out alright. Try not to over think things and keep your mind distracted over the weekend as best you can.   

    Give us a ring if you want to talk anything over. Our number is Freephone 0808 800 4040 and we are around he lines are open from 9am till 5pm Monday to Friday.

    Best wishes, 

    Julia

  •  

    Thanks so much for replying . I hope it is just a polyp , not had any problems for 12 years since menopause and the gyenocolgist said he doesn't see anything bad if my endometrial stripe got to 22mm in 12 years with no problems . We shall see and I will def post back here .

  • Hi, thanks for replying , and for the enouragement , its a very good sign our CA125 are normal , so lets get this done and here's to the future :happy:

  • It wasn't a polyp , had a biopsy taken now waiting 2-3 weeks  Feeling sick to my stomach .

  • Did it say on your report after surgery that it was fybroids or just that a biopsy had been taken?

    Mine was really brief and now I am at home sat on worry not knowing what is going on down there .

     

    The pain today is the least its been and with the normal CA 125 I am now wondering what will happen and my mind is all over the place with procedures and medications with side effects etc .

    I feel so lost and these past four months I've felt like I am living in the twilight zone . 

  • I initially went for a hysteroscopy to remove the polyps seen on ultrasound but during the procedure she told me she would be unable to remove them that day and she just did womb biopsy. I didn't get any report afterwards or any indication that it was fibroids. At the time they seemed more concerned about the 'adnexal mass' found during ultrasound.  All their findings came in letter form about 4 weeks later and thats when I found out I had ovarian cysts, fibroids, normal CA125 and nothing suspicious found. I received another letter a couple of months later about the surgery for fibroid removal and thats in 2 weeks so I've not been yet. I presume they need to have the all clear from the womb biopsy before they can remove fibroids.

    Do speak to your GP or the hospital if you are worried. I had a telephone appointment with the GP to talk through everything and he did assure me that I could still go to him regarding pain and bleeding. MY MDT outcome was to repeat blood tests in 6-8 weeks and the womb biospsy in 6 months and I was worried that the bleeding was going to just get worse and I would be left suffering

    I was told originally that treatment would likely be to have a mirena coil fitted to stop womb thickening. I have no problem with that as thats what happened when I had my polyps removed nearly 20 years ago - no side effects whatsoever.

    Unfortunately in my case the repeated blood test showed raised tumour markers (others, not CA125) so I've had more letters to ask for blood tests to be repeated again with a possibility of another MRI. They are also going to do an ultrasound to check on the cysts and another womb biopsy in January so I'm staying with you in the twilight zone.

    I hope you get answers soon - I'm sure that once they have discussed to findings from your surgery, you will hear. I was certainly aware after talking to the GP that he had access to a more detailed report that the letters sent by the hospital to us both

  • hi thanks for the reply , its just crazy the waiting and causes more stress . The geynocologist said if it wasnt for the rules he would have removed the ovary with the cyst on yesterday , but he wans't allowed to do that . 

    I was really hoping it was a polyp as it stops the bleeding , but it just said a biopsy was taken with a number at the side .biopsy taken 31/62 and will write the result to me . 

    The twilight zone continues lol .I know now though that I am not frightened to have general anestehetic  so that;s one fear out of the way at least . 

     I hope yours goes well , please do update me .

  • Hello I can see that you are waiting for biopsy results.

    I think it is fair to say that waiting for results is difficult and can be worrying. So I hope you don't have to wait too much longer and have support from family and friends.

    Take care

    Caroline

  • Hi. Yes I have a lot of support, I guess I was disappointed it didn't mention a polyp on the report after the procedure as that would have been an endto this . 

     

    It says he took a biopsy of 31/62 whatever that means .