Finished breast CA treatment, now possible ovarian CA?!

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I'm really confused and scared. I have just finished treatment for stage 2, HER+ bilateral breast CA. About a year ago my gyn also found an ovarian cyst. I went in to have it examined again in June, and it was a tiny bit bigger (or that was measurement error). My onc has referred me to a gyn onc, whom I saw last week. The ovarian cyst is small (about 2 cm) and looks hemorrhagic. The gyn onc ran a CT, which didn't really add any info. Meanwhile, my carcinoembryonic antigen has been found to be 7.1 (too high). C125 is fine, as are breast CA markers. Unfortunately, no one thought to run CEA previously. Have had a complete genetic workup, without finding any abnormalities.

I don't know what to do here! The gyn onc said he thought it would come down to figuring out what I could live with-- having a hysterectomy when maybe it's not malignant, or not having surgery when it may be malignant! I'm just really feeling like this whole situation is impossible after breast CA. Has anyone had a similar situation? What would you do? I meet with the gyn onc tomorrow morning.............

Comments

  • KBL
    KBL Member Posts: 2,521
    edited October 2019

    I'm not sure I'll be much help, but when I was first diagnosed Stage IV de novo breast cancer in May, all of my tumor markers were high. CEA was 7.2. I had a partial hysterectomy in 2012. I kept my ovaries. My hysterectomy wasn’t because of cancer.

    After being in treatment from May to now, my CEA is still at 6.0. They have not recommended anything as far as gynecological testing. I just had a CT scan with contrast, and nothing lit up. I hope everything is okay for you.

  • Fairchild
    Fairchild Member Posts: 206
    edited October 2019

    KLB, Thanks so much for your response. That is very helpful-- frightening, of course, but helpful. I'm thinking that these doctors are having a hard time figuring out how seriously to take the tumor marker change, so your information helps me understand that the marker doesn't have to be sky-high to indicate a problem. How did they learn that you are stage IV? Is there a standard set of tests that help evaluate metastases?

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited October 2019

    I can't help you with tumor marker information, but I found out I had kidney cancer right about the time of my lumpectomy. And I'd previously had endometrial/uterine cancer, with a very thorough hysterectomy. It's all doable.

  • KBL
    KBL Member Posts: 2,521
    edited October 2019

    Last October I started having significant weight loss and early satiety. After visiting primary, she wanted me to have an endoscopy and colonoscopy at the same time. Gastro said he really didn’t see anything but biopsied five places in my stomach. Came back as malignant. He wanted a second biopsy, so I had another endoscopy, and they found the cancer in two places in my stomach. After many tests, it was breast cancer, but I have never had a primary found. I’m on Ibrance and Letrozole, and although I’m not gaining any weight, I feel I’m able to eat a little more and my tumor markers have dropped around 60 points. My 27-29 and 15-3 markers are 422 and 169, still high, but a drop down is good, so I’ll take it.

  • Fairchild
    Fairchild Member Posts: 206
    edited October 2019

    Alice, thanks so much for your post! It looks like you and I were diagnosed with breast CA in the same month. I've also had a previous CA-- a chondrosarcoma that was removed in a partial amputation of my hand 20 years ago. You're right-- It's always, always doable. I'm a mom, with young adult offspring. My dad died when I was 18, so I know that young adults still need their parents. I intend to live as long as humanly possible!

  • Fairchild
    Fairchild Member Posts: 206
    edited October 2019

    KLB-- Wow. Kudos to your primary for making sure you were worked up for that weight loss and early satiety. I have had a significant weight loss, too, but nobody comments on it. I lost about 20 lbs during chemo, b/c I was so nauseated, and then another 20 last spring after I finished chemo in December. I just didn't feel like eating. Around April I stopped losing weight, and I continue to be not very interested in food. But at least my weight is stable now. I still skip meals often-- well, really every day, b/c I'm just not hungry. All of this worries me. I saw the gyn oncologist this morning, and we are scheduling removal of both of my ovaries and fallopian tubes. He isn't terribly concerned that this is cancer, at this point, but he said it made sense to remove them if for no other reason than for the risk they represent and my own concern. My other tumor markers are perfectly normal-- Only the CEA is elevated, which I don't understand. I gather it could mean I have a met, or some other completely different form of CA, which is really frightening. I haven't had any imaging done to rule out mets.

  • KBL
    KBL Member Posts: 2,521
    edited October 2019

    Yes, I have a wonderful nurse practitioner. My story is a long one. She has been with me a long time, and I had had two previous cancer scares, one in 2013 and one in 2016, so when the symptoms came up, she wanted to make sure it was another false alarm. This time it was sadly not. The first two times I had an MRI for back pain from a car accident and was told they thought I had multiple myeloma. It's been a rough six years, but she is hypersensitive with me now. I started to think the radiologists were the hypochondriacs. I have no idea what was in those images that would make them think that. At that time, all my CBC blood work was fine. This time it's a total mess. It's just been weird.

    I can't imagine what could be causing you not to want to eat I got hungry, I just could not eat very much. I was not heavy to begin with, so when I lost the weight, it was a little shocking. It happened pretty quickly. I am stable now, but I'm not gaining it back either. I am eating more now.

    Are you able to possibly get a CT scan? Have you ever had an endoscopy? You might want to consider it. I also had nausea after I ate. I never threw up but always had the nausea.

    I hope your surgery goes well.

  • Fairchild
    Fairchild Member Posts: 206
    edited November 2019

    KLB, Thanks for your info and good wishes. Surgery is being set for December, the soonest I can do it with work. I did have a CT (abdominal) just last week, which was fine, except for confirming the cyst on my ovary. At this point, I suspect I just need to chill for the next 6 weeks until they do the surgery, and then if the ovary is positive for CA, we'll know why my ferritin and CEA are so high. If it's not positive, I hope my onc does more imaging to figure out why the CEA is elevated. I called the practice last week to ask about it, but no return call yet. Re stomach issues-- I had an endoscopy years ago, but not recently. I'm not throwing up-- It's just that I'm rarely hungry, so I've fallen in the habit of skipping dinner every night. I don't know if that lack of hunger is a symptom of the CA or the meds I was on until August or maybe just my tiredness. Right now the only cancer related meds I'm taking are hormone blockers, and I don't think they would cause that. Anyway, thanks for the information, and wishing you well!

  • KBL
    KBL Member Posts: 2,521
    edited November 2019

    I’m not sure if you mentioned the high ferritin before. When I tested the CEA and it was 7.2, my ferritin was also high at 247. I haven’t had it checked since. I should have it checked again as well. I’ll ask and let you know what they say. I know it’s going to be hard waiting, so please come back and let me know how it goes.

    I’m not thrilled with eating because I’ve been nauseous, but I get hungry, which is good. I do eat, but it’s not much fun. Lo

  • Fairchild
    Fairchild Member Posts: 206
    edited November 2019

    Thanks, KLB. I'm glad you told me about your ferritin. I talked with the nurse at my oncologist's practice last week about the unpleasantness of this surgery being scheduled and asked about the tumor markers-- ferritin and CEA both. She checked with the nurse practitioner and said they don't conduct any further workups just because of tumor markers being high. But she said they ran the ferritin because I've been pretty severely anemic and they wanted to make sure it was improving, post-chemo. She didn't seem to connect it with the possibility of a reoccurrence at all. My ferritin level was normal through chemo, but was in the 700s in January and is in the 800s now. Bummer. So I think I'm just gonna hang in till I get this surgery done and then maybe get a 2nd opinion if I still feel uneasy afterwards....

    Wishing you well!

    Fairchild

  • KBL
    KBL Member Posts: 2,521
    edited November 2019

    Thank you for the update, Fairchild. I wonder if the ferritin has to do with anemia. I’ve been anemic since last October. We haven’t done anything for it. It’s not bad enough to have to have a transfusion or anything like that. Please let me know how surgery goes.

  • ZZZAAAZZZAAA
    ZZZAAAZZZAAA Member Posts: 43
    edited December 2019

    Any one have experienced with very high ca15.3 with 2432 ???? please tell me the experienced

    my mother stage 4 and she have mets in his bone and 2 spot in the liver she takes only hormone armosin 25 mg and she have a very high ca15.3


    so tell me please any one have experienced with a very high ca15.3 like my mother ??

  • Fairchild
    Fairchild Member Posts: 206
    edited December 2019

    KLB, I just wanted to let you know I had the surgery on Dec. 12th-- The gyn oncologist removed both my ovaries and fallopian tubes. We should get the biopsy result back by the end of the year. The surgeon said he'd be really surprised if it's cancer, so I'm holding on to that thought. Had a bit of a post op infection, but it's getting better on antibiotics. I'll let you know when the biopsy's in.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited December 2019

    FC, I hope your tests come back B9. I had ovarian cysts 10 yrs ago and I was so freaked out, it caused me to have an anxiety attack! whoops:). Heavy bleeding, on and off periods. Also had Uterine fibroids. I did have Hyst/Ooph and I'm glad that I did. One less worry at this point. Only regret for me is that I did not monitor my bones as I should have. When you don't have the estrogen from your ovaries, it can cause bone loss. Keep an eye on it! I now have Osteoporosis. Best wishes to you all.


  • KBL
    KBL Member Posts: 2,521
    edited December 2019

    Hi, Fairchild!

    Thank you for the update. I’m so sorry you ended up with an infection. What a pain. I hope you’re having a quick recovery. I’m hoping it’s benign, like keepthefaith says. I will watch for your results. The waiting is the hardest part. I know it’s hard, but I hope you can try to relax a little during the holidays. Hugs.

  • Fairchild
    Fairchild Member Posts: 206
    edited November 2020

    Well, it's only taken me a whole year to remember that I never posted about the biopsy here! It was fine! I think the surgeon was as relieved as I was. And fortunately, in the year since then, I haven't had anymore weird symptoms that could raise the specter of CA again, thank heavens!

  • Sunshine99
    Sunshine99 Member Posts: 1,680
    edited November 2020

    Thanks for the update, Fairchild. I'm sorry about the infection, but am so glad your results came back benign!

  • wallycat
    wallycat Member Posts: 3,227
    edited March 2021

    Glad it was B-9!

    KBL, when you had your MRI and they said multiple myeloma, did they do anything else about that? further tests? treatment??

    I hope it is ok to ask; I'm having some scares at the moment.

  • KBL
    KBL Member Posts: 2,521
    edited March 2021

    Hi! I answered you privately.

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