How is monitoring done when they say you are clear of the cancer?

Ces59
Ces59 Member Posts: 8
in Uterine/Endometrial Cancer #1

 Firstly a word of thanks to all of you who supported me when my cancer was first detected. i promised i would report back and try and support others which I am doing on the facebook site which I find iis technically better. I seem to have some techie problems with this site. now an update. It is now six weeks since I had the hysterectomy and unfortunately I am still having spotting but the docs don't seem worried. I feel so well it is hard to do nothing - I should rest more. I had lots of biopsies taken from outside the womb and they all proved negative so it was all contained and removed. So thankfully I have not needed radiation or chemotherapy. I feel as if my life has been given back to me. So I was officially staged as a 1a. Now I am on a three month monitoring arrangement but don't really know what that means. How can they check whether it is all clear when there is no womb to see inside. Will it just be by blood tests? I had a full internal at 4 weeks. Not very nice really - quite painful in fact.

Comments

  • jazzy1
    jazzy1 Member Posts: 1,379
    #2
    Ces

    Once again, so happy you've got the good news after the surgery.  Sure is one less big stresser in your life.  I must tell you, once any of us hear the words YOU HAVE CANCER, it truly is never gone from our minds....sorta like getting into a "new normal".  

    I cannot  give you guidance for follow up procedures after the staging of 1a....just what I feel would be helpful.  My oncologist has always told me, when you see blood, especially more on redish side vs. brown it must be checked out.  Could be just nothing, but don't stick the head in the ground and "assume" all is okay.  Come in and have it checked out!!!!!!  I had an instance a year ago as saw some blood spotting after I urinated.  I just flipped out and was in worry, but did what doc suggested...called him and got in right away.  By the time I was in his office, the spotting had completely stopped.  Doc did a PAP and physical exam, and we spoke about what could have caused this spotting????  Thoughts were from the  dialator I must use frequently due to my radiatioin or just some dried scar tissue broke loose.  Never really knew what happened, but  never have had that again and I'm still on the path with NED.

    My suggestion if it were me, call the doc and get to his office and force him/her to do something to relieve any of your concerns.  Don't go off the wall with worry, but as with me, IT WAS NOTHING!!!!  Think the good thoughts!

    I do know a few others on these boards have been in your shoes and give you real specifics.  

    Cyber hugs and keep smiling....

    Jan

  • Stabler
    Stabler Member Posts: 51
    #3
     I had my hysterectomy done

     I had my hysterectomy done Dec 31st.  Was told we caught it in the earliest of earliest stages, just begining. Staged 1a.   I went for my follow up after the hysterectomy and he just did an internal exan. Now I'm on a three month monitoring arrangement like you.  I was told that it would involve a pap test and an internal exam, and that sometimes they do blood work, but that is not the norm.  Congrats on the good results.  I admire the women on this site so much for what they indure. 

  • Kathy G.
    Kathy G. Member Posts: 244 Member
    #4
    Stabler said:

     I had my hysterectomy done

     I had my hysterectomy done Dec 31st.  Was told we caught it in the earliest of earliest stages, just begining. Staged 1a.   I went for my follow up after the hysterectomy and he just did an internal exan. Now I'm on a three month monitoring arrangement like you.  I was told that it would involve a pap test and an internal exam, and that sometimes they do blood work, but that is not the norm.  Congrats on the good results.  I admire the women on this site so much for what they indure. 

    Hi Ces
    I also was diagnosed a

    Hi Ces

    I also was diagnosed a stage 1a/grade 1 after my 1/13 hysterectomy. I just had my 1st internal this past week and the dr. told me this would be the only follow up treatment unless I had any bleeding...no matter how minimal! I will have internals every 3 months the 1st 2 years and then every 6 months the remaining 3 years. After I reach the 5 year mark I will not need to continue with this 'treatment.'

    My internal was also painful, but I figured that was due to recently having the surgery and not being 100% healed. I have always had major difficulty with internals, but I will tell you I am so grateful this is all I need to have done that the short-term pain and anxiety are a small price to pay! It couldbe so much worse. My dr. said the chances of re-occurences were under 5%.

    So congratulations on your diagnosis, but be faithful about the follow-ups no matter how painful and stay vigilant about any blood, discharge or other changes!

    Kathy

  • pinky104
    pinky104 Member Posts: 574 Member
    #5
    Follow Ups

    I had stage IV cancer.  I went back every 3 months for two and a quarter years and I'm now going back 6 months at a time.  My surgeon and my oncologist are in different hospitals (that was my choice so I could get chemo closer to home), so I still see one or the other every 3 months even though I'm seeing each one at 6 month intervals. 

    Each time I go to either one, they do blood work.  There is always a comprehensive metabolic profile and there is always a CA 125 test (a tumor marker test) and there are usually one or two other tests they do.  When I had cancer, my CA 125 result was 94.  Now, it's at 8.  You always have some cancer cells in your body.  It's just a matter of how much they multipy that matters.  From what I've read on this site, most people have much higher CA 125 results than I did, even those with a lower stage of cancer.  I've even read about some in the thousands.  CA 125's, I've heard, may or may not be accurate.  I think that if your reading is high when you have cancer, they're probably accurate.  But some people have CA 125's that don't show their cancer, too.

    I also had 2 CT scans in the first year and a half or so following my surgery which were both negative. They can't do them too often or you'll be at risk of more cancer from the radiation.

    The doctor will also do a physical exam, feeling your abdomen, listening to your heart and lungs, looking in your mouth and ears.  If you have any symptoms, they will probably do more scans or x-rays. 

    Hope this helps.   

  • cleo
    cleo Member Posts: 144
    #6
    Monitoring

    I  reached 5 years NED, stage 3/4 MMMT, in December and have been officially returned to the sole care of my general practitioner who I will continue to see three monthly [ as I have throughout so she is totally conversant with my treatment] for bloods and general care.   Obviously should there be any concern I would be immediately referred back to my oncologist.   I had 6 monthly CT scans for two years followed by 3 years of one scan a year.   Smear tests also.  All under the care of my oncologist.      For my own peace of mind I may continue to have a yearly CT scan though I have to weigh that against the radiotherapy 'zaps' that do gradually tell on the system I have found. 

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