After Tah still fatigued

I was diagnosed with 3b ovarian cancer and had surgery march 16th 2017. No chemo or radiation needed but the tumor cells have spread. I am still trying to work a few days a week but am constantly fatigued and seems to have highs and lows moments after 10 weeks. Trying to eat right get rest but still no improvement my ca125 is still elevated was in the 800s now in the 700s. Any advise to get me back on my feet would be great

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  • Hi Rgtater63, sorry to hear that you've been having such a difficult time. I haven't gone through this myself, but here is a thread where others who've gone through a similar experience have shared their stories: bit.ly/2r1745j Hope it helps.

  • Please get a second opinion immediately! I am shocked that after surgery for 3B OC you were not advised to have chemo to kill off any remaining micro disease. "No chemo or radiation needed" sounds wrong, possibly negligent. Please investigate further. Your treatment sounds incomplete. Where are you? T

  • Please get a second opinion. I had Stage 1B and had extensive surgery and 6 rounds of chemo. I agree with another person hat this is negligent care. Please keep us posted. Good luck to you. Are you in the US? If you are neat Chicago, I can recommend my highly regarded Oncologist.

  • Thank you i am from ct. Had 2 large tumors completely removed 12.5 cm and 10 cm. As well as tah. They say the cells i have are resistant to treatment and that even though micro tumor cells were found in my small bowel and intestines that nothing can be done until the form into tumors and then surgically take them out before they become cancerous. The plan is watch closely and do bloodwork and ct scans every 3 months. Called low malignancy with a high reaccurrance rate. But i have been wiped out and fluid drained off my abdomen and still feel like crap but trying to stay positive and keep my mind and body strong

  • Hi. I am new to this site, however when I saw your story it hit home with me. It sounded almost exactly like what I went through after my diagnosis 3 years ago. First of all if you are going into menopause that can be hard. Normally our bodies ease into it naturally, however when we have a hysterectomy and force or bodies into it that can be difficult and quite a shock to the system. Make sure you are eating well, taking vitamins, especially vitamin D, rest whenever you can. If you are tired, rest. I also went into quite a deep depression after my diagnosis and surgeries and I am so thankful my mom recognized the signs because I did not. It can be quite scary going through all of this and we might think we are handling it well but deep down we may not be handling it as well as we think. Depression can make you feel fatigued. It can manifest in many different ways, not just the classic symptoms we are all familiar with. I had hardly no appetite, I didnt leave my house for almost a week. I was unable to sleep for more than a few hours. I thought it was just because of menopause. Little did I know I was actually suffering from depression. Its symptoms and severity varies from person to person. I would suggest talking with your primary doctor about your symptoms. Sometimes I feel our oncologists can get so caught up in treating our cancer they dont look at or concern themselves with the other symptoms we are having.

    I do agree with the other women that posted about getting a second opion about your CA125 and lack of chemo after your surgery. It is better to be safe than sorry. Are you able to find another oncologist in your area who you could see just to get a second opinion about your treatment. I had lower malignancy cells found on my omentum after surgery and was told chemo is not effective on these type of cells, however my CA125 was lower.

    Sometimes it just helps to talk with women who have been through what you are going through. I was not able to talk to my family or friends because I just didnt feel like they understood what I was going through. I wish I would have found this site then lol. Feel to free to reach out to me if you ever need to talk. Im sending you well wishes!! I can tell you it does get better.

  • Thank you for the help and words of support

  • I was looking up some information on low malignant potential ovarian cancer (borderline ovarian cancer) and found the following website that may be of interest if you haven't already found it: cancer.gov/types/ovarian/pa...

    One of the links off that site goes to clinical trials for your type of cancer. It listed two trials, one is a phase II trial using nivolumab and ipilimumab (https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/view?cdrid=782378&version=HealthProfessional&protocolsearchid=15282513#link/EntryCriteria_CDR0000782378) Nivolumab (brand name is Opdivo) is a checkpoint inhibitor and one of the new class of drugs that is showing promising for a number of cancers. Ipilmumab (brand name is Yervoy) is one of the new forms of immunotherapy that targets CTLA-4, a receptor that is involved in regulating your immune system.

    You may also be interested in missa13's post today about the upcoming Ask an Ovarian Cancer Expert Anything. They may have some insight in to the most current thoughts on treating low malignant potential ovarian cancer.

    Best wishes to you.

    Gwen

  • Thank you very much

  • Like everyone else, I am shocked you didn't get chemo. You should have gotten chemo and your CA-125 monitored until the marker goes back to negligible (-35). You should also probably get another CT scan to see if where it's growing. CHANGE DOCTORS immediately!

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