post hysterectomy/cancer surgery and pain one year later

hopeland2
hopeland2 Member Posts: 2
edited March 2014 in Uterine/Endometrial Cancer #1
Hello,
My mother was diagnosed with stage 3c cancer one year ago. The docter said the majority of the "cancer" was in her omentum. She had a complete hysterectomy and removal of the omentum. After the surgey the doctor said she still had small spots on the lining of her liver and kidneys. He thought her cancer orginated in her ovaries but after a few days the final pathology came back as uterine. It has been confusing because she did not have any of the more usual early signs of uterine cancer. She had chemo every 3 weeks 5 times. Her last chemo was December. The doctor said even if the chemo was initially successful there was a 70 percent chance the cancer would return within one year. So life is hard with that constantly in the back of your mind.
I thought I would give the background...now for my current question and situation. About 2 months ago which would be about 10 months after the surgery my mom began having pain in her pelvic area similar to cramps which seemed to worsen when moving around. She also began having pain or worsening of pain after urination. She went to her regular doctor and did not have an infection so her oncologist ordered a ct scan. It came back looking okay except for a couple of benign tumors on her liver (dont remember name) which he said had been there likely for years. Also he said there was scar tissue and likely that was the cause of the pain. She is taking prescription pain meds and those help but leave her feeling tired and sluggish. Lately the last couple of weeks seh says the pain seems a little worser.
I am wondering if anyone else has experienced this?
God Bless

Comments

  • california_artist
    california_artist Member Posts: 816 Member
    #2
    terribly sorry to hear of your mom's problems
    Hi,

    you mentioned that the oncologist ordered a ct, and that there were some spots on your mom's liver that were benign. Sorry to say, but a CT does not show metabolic activity as would be present in cancer. Only a PEt or Pet/ct would show metabolic activity. You might want to questsion her oncologist again regarding those "benign findings". It is always a good idea to go to the hospital and request a print out of the results. Let me know how things turn out. Also, knowing the size of the spots would be prudent.

    Sincerely,

    Claudia
    claudiaallen27@yahoo.com
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #3
    HMMMMM?
    How did they decide the tumors were benign without doing a biopsy??? What is the next step in dealing with this pain? Pain medication masks pain and pain is is SYMPTOM that something is wrong. They don't FIX the problem.

    My gyn-onc told me that if there was anything different in duration, intensity, or frequency that lasted for 2 weeks that this is sign something is wrong. If it was me, I would push for more testing AND even get a second opinion. If a gyn-oncologist is not involved I would seek one out.

    My prayers and best wishes go with her. Mary Ann
  • deanna14
    deanna14 Member Posts: 732
    #4
    daisy366 said:

    HMMMMM?
    How did they decide the tumors were benign without doing a biopsy??? What is the next step in dealing with this pain? Pain medication masks pain and pain is is SYMPTOM that something is wrong. They don't FIX the problem.

    My gyn-onc told me that if there was anything different in duration, intensity, or frequency that lasted for 2 weeks that this is sign something is wrong. If it was me, I would push for more testing AND even get a second opinion. If a gyn-oncologist is not involved I would seek one out.

    My prayers and best wishes go with her. Mary Ann

    PET/CT
    You really should request a PET/CT.
  • Unknown
    Unknown
    #5
    deanna14 said:

    PET/CT
    You really should request a PET/CT.

    This comment has been removed by the Moderator
  • Songflower
    Songflower Member Posts: 608
    #6
    Abdominal pain
    I agree you need a PET scan possibly a biopsy. A second opinion never ever hurts. Good luck and you're in my prayers.

    Diane
  • lociee
    lociee Member Posts: 102
    #7
    Pain in pelvic area
    Hi hopeland2 - I have had a very similar experience. Uterine cancer - complete hysterectomy - but the pain didn't go away! Kept going to the doctor complaining - they didn't know why I had the pain. Then more than a year after surgery a CAT scan was done. Doctor found something but said it "was probably just scar tissue." Found out several months later - and unbearable pain - that it was a tumor which had continued to grow and wrapped itself around my colon. If he had ordered a Pet scan when he found that little bit of scar tissue - the tumor would not be what it is today (it's also spread to my lungs). I've spent the last year in chemo @ radiation - which slowed the growth - but this tumor is unstoppable. Your mom needs a Pet scan ASAP! to determine scar tissue or tumor! And - I live on Percocet and Larazapam! The pain increases at night when I lie down.
  • hopeland2
    hopeland2 Member Posts: 2
    #8
    update on mom with post hysterectomy pain
    Hello,
    I will suggest to my mom about the "pet" scan. She was initially diagnosed by the blood test and then also a cat scan so I dont know about the "pet" and why they havent done that. The tumor or cyst...not sure which word he used...my dad did research in on the internet and it said they occur in older women and are not harmful unless they grow so much that they can infringe on other organs. The doctor had a particular name for them...I just dont remember.
    As far as the pain she is taking oxycodone but she says it is not working as well lately. She also doesnt like to take it because it makes her feel so drowsy.
    I called the oncologist office this week and spoke with a nurse about the pain. She called a couple of days later and said the doctor wanted to move up her appointment from mid September to next Tuesday. She is suppose to have blood work, another cat scan and examination. The nurse said it would be unusual for someone to have pain to the extent where it is incapacitating. I told her about reading on the net about adhesions that can form from the scar tissue but she said thats unusual.
    My mom said the other day that this like a cruel trick....
    Please pray and send her good thoughts.
    Blessings,
    Hope
  • lociee
    lociee Member Posts: 102
    #9
    hopeland2 said:

    update on mom with post hysterectomy pain
    Hello,
    I will suggest to my mom about the "pet" scan. She was initially diagnosed by the blood test and then also a cat scan so I dont know about the "pet" and why they havent done that. The tumor or cyst...not sure which word he used...my dad did research in on the internet and it said they occur in older women and are not harmful unless they grow so much that they can infringe on other organs. The doctor had a particular name for them...I just dont remember.
    As far as the pain she is taking oxycodone but she says it is not working as well lately. She also doesnt like to take it because it makes her feel so drowsy.
    I called the oncologist office this week and spoke with a nurse about the pain. She called a couple of days later and said the doctor wanted to move up her appointment from mid September to next Tuesday. She is suppose to have blood work, another cat scan and examination. The nurse said it would be unusual for someone to have pain to the extent where it is incapacitating. I told her about reading on the net about adhesions that can form from the scar tissue but she said thats unusual.
    My mom said the other day that this like a cruel trick....
    Please pray and send her good thoughts.
    Blessings,
    Hope

    PET
    You really need to demand a PET scan. It's useless to get another cat scan. She just had one! Notice that everyone who responded to your initial message stressed the need of a PET. Don't wait! It's the PET that shows if it's cancer.
  • Unknown
    Unknown
    #10
    lociee said:

    PET
    You really need to demand a PET scan. It's useless to get another cat scan. She just had one! Notice that everyone who responded to your initial message stressed the need of a PET. Don't wait! It's the PET that shows if it's cancer.

    This comment has been removed by the Moderator
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #11
    unknown said:

    This comment has been removed by the Moderator

    Patricia
    Did they do any X-rays or scans after surgery to check? If not, I'd definitely advocate for this -

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