Clear Cell Carcinoma-How frequent to get CT scan

acarmenhall
acarmenhall Member Posts: 2
in Ovarian Cancer #1

I was diagnosed with stage 1 ovarian cancer, however it is clear cell which apparently is more aggressive and does not show up on CA-125.  I am finishing my last round of carbo-taxol on Feb 21st.  I have a CT scheduled for March 8th but wanted to know if anyone knew how often I should get one since the only way to find clear cell is when a tumor develops...I am concerned it can return with a vengence and want to stay ahead of it...any thoughts would be helpful.

Comments

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #2
    Carmen~U will B A good judge as 2 how often U need a scan!

    Dear Carmen:

    Even though Stage I Ovarian Cancer looks innocent enough, you and I know it is not.  Not liking to do anything “half-way” I just jumped right in with Stage IV, having first discovered countless cancerous nodes in the Peritoneal fluid in my abdomen.  Then a 2nd opinion also discovered that it was also in my ovaries.  So (neo-adjuvant) chemo of Taxol/Carboplatin was given prior to my Cytoreductive Surgery @ UPMC on July 1, 2013. 

    Not being able to answer you definitively, but knowing that OCC is often “stealth”, make sure you have had a 2nd opinion, and that your staging has been ordered by a gynecologic oncologist.  They have had years of additional special training in diseases of the female organs. 

    In reading one lady’s story, she writes that actually her CA-125 count was below 35 and so she was told she didn’t have a chance at ovarian cancer but it was there!  That was an old story that I couldn’t find a current follow-up to so I didn’t list it below my name. 

    As for the frequency of upcoming CT scans or PET/CT scans, I do know that chemo continues to have a cumulative effect of up to 3 weeks from the last treatment session, so your March date is right in keeping with that schedule.

    My lab visits are weekly since I am on Coumadin for DVTs.  But once a month, in addition to an INR check for my Coumadin level, I have a CBC which includes my tumor marker CA125 count.  So beginning with your count as it will appear in March 8th report results, your oncologist will make a note of it.  If at any time, it begins to move upward he/she will mark the advance.  When my marker makes cumulative/consecutive additional upswings, my oncologist orders a CT scan to see what’s going on inside.  Moreover, if I express concern over the rise, I tell him so, and he orders it, so we’ve never disagreed.  My scans are done as they are needed rather than at some pre-set for pre-determined interval.  Presently I’m on chemo and I have a CBC workup weekly.  Unfortunately, our cancers don’t come with an auto-set button in which everything works like clockwork!  Would that it did—then we could just get out our “what-me-worry button”, put it in our pocket and be on our merry way.

    You will find yourself the best “advocate” as you keep abreast of your particular cancer, and it can recur even when you’ve had the prescribed chemo treatments.  Let’s just pray that the count shows a drastic reduction, and your return to a good quality of life returns rapidly.  You should be feeling better as soon as the effects of this chemo wears off.  May you have a looonnngggg period of PFS (progression free survival)?  The links below will give you some idea of clinical trials in which women with similar diagnoses such as yours were treated, how they fared, and their prognosis. 

    Love Loretta

    Peritoneal Carcinomatosis/Ovarian Cancer Stage IV - (Diagnosed Nov. 2012)

    _________________________________________________

    1. http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer

    2. https://www.oncolink.org/cancers/gynecologic/ovarian-cancer/all-about-ovarian-cancer

       https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046749/

      “Surgical Debulking of Ovarian Cancer: What Difference Does It Make?...”

       

    3.  http://theoncologist.alphamedpress.org/content/11/10/1089.full

    “Treatment Issues in Clear Cell Carcinoma of the Ovary: A Different Entity?

    1. 5.       http://www.dovemed.com/diseases-conditions/clear-cell-adenocarcinoma-ovary/

    Last updated Dec. 17, 2016…

    “What are the other Names for this Condition? (Also known as/Synonyms)

    OCCA (Ovarian Clear Cell Adenocarcinoma)

    Ovarian Clear Cell Adenocarcinoma (OCCA)

    What is Clear Cell Adenocarcinoma of Ovary? (Definition/Background Information)

    Clear Cell Adenocarcinoma of Ovary is a rare malignant ovarian tumor that generally affects middle-aged women. The causal factors for Clear Cell Adenocarcinoma of Ovary are unknown

    Tumors of the ovaries can be benign, borderline or low malignant potential (LMP), or malignant tumors. Thus, not all ovarian tumors are cancers

    Benign tumors are not cancerous and do not spread or metastasize. Borderline or low malignant potential (LMP) tumors are usually benign, but some of them can behave like cancers. Malignant tumors are cancers that spread and metastasize

    Clear Cell Adenocarcinoma of Ovary is a rapidly-growing tumor that arises from the epithelial cells in the ovary and occurs as a combination of cyst and solid mass within the ovary

    In a majority of the cases, the tumor presents as a single mass within the ovary. These tumors are associated with endometriosis of ovary and pelvis

    Ovarian Clear Cell Adenocarcinomas (OCCAs) are usually present with signs and symptoms, such as abdominal pain with movement, vaginal bleeding, and increased abdominal girth

    The treatment for Clear Cell Adenocarcinoma of Ovary may involve chemotherapy, surgery, radiation therapy, or a combination of these procedures. The prognosis depends on many factors that include the stage of the tumor

    The prognosis of Ovarian Clear Cell Adenocarcinoma is typically poor despite the provision of appropriate treatment, especially if it has spread to other parts of the body (termed metastatic clear cell adenocarcinoma)…”

    ______________________________________________

    1.  https://www.ncbi.nlm.nih.gov/pubmed/22398705

    “Adjuvant chemotherapy for stage I clear cell carcinoma of the ovary: an analysis of fully staged patients…

    Abstract - OBJECTIVE: Although postoperative adjuvant chemotherapy is generally recommended for early-stage ovarian cancer, it remains unclear whether adjuvant chemotherapy is also effective for clear cell carcinoma (CCC)…

    METHODS: - Seventy-three patients with stage I CCC of the ovary who had undergone complete surgical staging formed the study population (stage IA, 20 patients; stage IC, 53 patients). Survival and multivariate analyses were retrospectively performed to determine the effectiveness of postoperative chemotherapy in these patients….

    CONCLUSIONS:  The current study was performed only in fully staged patients, suggesting that postoperative adjuvant chemotherapy is not necessary for stage IA CCC patients. For patients with stage IC CCC patients, adjuvant chemotherapy suppressed recurrence, but the effectiveness was insufficient in our limited study. Further studies are required to clarify this…”

    ____________________________________________________

    1.  https://www.ncbi.nlm.nih.gov/pubmed/25010038

    “Impact of surgical staging in stage I clear cell adenocarcinoma of the ovary…

    Abstract - AIM:  The aim of this study was to evaluate the impact of surgical staging in stage I clear cell adenocarcinoma of the ovary (CCC)….

     

    CONCLUSIONS: The prognosis for women with stage 1A/IC1 is very good. Surgical staging category was the only independent prognostic factor for RFS in stages IA/IC1 CCC…”

    ____________________________________________________________

    1.  https://www.ncbi.nlm.nih.gov/pubmed/22041903

    “Survival impact of adjuvant paclitaxel and carboplatin for early-stage ovarian clear-cell carcinoma with complete surgical staging…

    Abstract - OBJECTIVES: The aim of this study was to estimate the survival impact of adjuvant paclitaxel and carboplatin (TC) compared to cisplatin (CDDP)-based chemotherapies for early-stage ovarian clear-cell carcinoma (CCC)…

    CONCLUSIONS: In our current examination of the long-term survival of early-stage CCC patients, we did not identify a superiority of TC over various CDDP-based regimens as frontline adjuvant chemotherapy…”

    __________________End of references_____

  • acarmenhall
    acarmenhall Member Posts: 2
    #3
    Loretta is awesome!

    Thank you so much for your advice!  You are wonderful!

     

  • MaryVig
    MaryVig Member Posts: 37
    edited March 2017 #4
    Me also Clear Cell Carcinoma OCCC

    in February I was also diagnosed as OCCC. I was Stage 1C and tomorrow will complete my day 15 chemo. I had the option of wait and see or chemo, and figured I wouldn't regret chemo. I am curious as to how you are doing?. I am told they will do a CT at the end of 9 weeks of dose dense carbo/taxol. My gynoncologist implied there might be quarterly CTs For the first year. How many rounds of chemo did you do? I had a genetic test started today, and won't get the results for 2 weeks. Did you go that route? So many questions about OCCC. like you my CA125 was not elevated, there was no family history, and they were sure my tumor was not cancer... until the biopsy results came back. So far I am tolerating the chemo, except for the 24-36 hrs after infusion.... and now learning to control the nasEA. Fingers crossed for you.

  • bettyboop3917
    bettyboop3917 Member Posts: 45
    #5
    I also have Clear Cell

    My CA 125 was high at 1650 that was Oct of 2015. 6 rounds of chemo and my CA 125 was down to 4. Then in Nov of 2016 my CA125 was 11.5 a CT was done in Dec of 2015 do to the CA125 raise. I knew it had came back yet the CT showed as clear. Jan my ca 125 jumped to 107. So yet one more CT was done. This time it showed some thing. On 2-7 I had surgery. I will say you know your body better then any one. You know when it's not normal. With female cancer not running in my family it came as a shock for everyone. 

  • Alto
    Alto Member Posts: 1
    edited May 2017 #6
    MaryVig said:

    Me also Clear Cell Carcinoma OCCC

    in February I was also diagnosed as OCCC. I was Stage 1C and tomorrow will complete my day 15 chemo. I had the option of wait and see or chemo, and figured I wouldn't regret chemo. I am curious as to how you are doing?. I am told they will do a CT at the end of 9 weeks of dose dense carbo/taxol. My gynoncologist implied there might be quarterly CTs For the first year. How many rounds of chemo did you do? I had a genetic test started today, and won't get the results for 2 weeks. Did you go that route? So many questions about OCCC. like you my CA125 was not elevated, there was no family history, and they were sure my tumor was not cancer... until the biopsy results came back. So far I am tolerating the chemo, except for the 24-36 hrs after infusion.... and now learning to control the nasEA. Fingers crossed for you.

    doubt

    Hi Mary, how is possible the oncologist offered you to watch instead of chemo. Was your ovario broken durimg the operation but the capsule was intact? How r you doing now? I Hope thing goes ok

    All the best

  • MaryVig
    MaryVig Member Posts: 37
    #7
    Alto said:

    doubt

    Hi Mary, how is possible the oncologist offered you to watch instead of chemo. Was your ovario broken durimg the operation but the capsule was intact? How r you doing now? I Hope thing goes ok

    All the best

    Stage 1C

    during the removal of the cyst, it broke making it Stage 1C. Two week later 2-1-2017 I then had a full hysterectomy and staging to test for other cancer. Fortunately, no other cancer was found in the 2nd operation. The gyn/oncologist and much of my reading sez that at Stage 1, patients are given the option of wait and see or dose dense chemo. This week I started chemo Round 4, I figured I would not regret it.

  • Simplicity
    Simplicity Member Posts: 3 Member
    #8
    Ovarian clear cell.not healing from hysterectomy

    diagnosed in March during miscarriage with Stage 1.  Tumor was size of softball but it was bagged. I am now in round two of chemo. Problem is I am eight weeks out of radical hysterectomy but still spotting. Have been put on complete bed rest. Anyone else had this problem?

  • bettyboop3917
    bettyboop3917 Member Posts: 45
    #9
    Simplicity said:

    Ovarian clear cell.not healing from hysterectomy

    diagnosed in March during miscarriage with Stage 1.  Tumor was size of softball but it was bagged. I am now in round two of chemo. Problem is I am eight weeks out of radical hysterectomy but still spotting. Have been put on complete bed rest. Anyone else had this problem?

    Simplicity

    Sorry for alll you are dealing with. I didn't start chemo till I had finished healing from my radical hysterectomy. It was about 8 weeks after my surgery till I started chemo and didn't have any troubles with spotting nor bleeding. 

     

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