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Thread: Shocked by metastatic ovarian cancer diagnosis

  1. #1
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    Shocked by metastatic ovarian cancer diagnosis

    Hello,
    This is my first time posting and I'm actually writing on behalf of my mother who is in shock by this whole thing. She was seen for bloating, heartburn and abdominal pain that was getting worse over the last few years. Transvaginal u/s revealed tumor in both ovaries, as well as fluid...she is post menopausal. CA125 is 3400 and CT scan also revealed masses on colon, throughout abdomen, and something questionable on the base of her lung. Her hysterectomy (plus abdominal mass removals, and possible resection of her colon) is on Friday but between her anxiety (she's on med for that) and her terrible abdominal issues she isn't eating, she feels like she won't keep it down. Now she's worried she won't be healthy enough for surgery. Any advice on how I can help her? She speaks with the surgeon again tomorrow but I'm trying to be proactive on her health leading up to surgery/chemo as well as fighting this cancer. Thank you so much.

  2. #2
    Moderator Top User jorola's Avatar
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    Hello Bridge

    So sorry to hear of your mom's troubles. I am glad she has you to help her out and that you have reached out to us. Has any biopsys been done? We have a saying around here that is is not cancer until a biopsy confirms it. I see her Ca levels are very high but a biopsy is still needed. Still sounds like surgery is what is needed as a first step to help her get healthy again no matter what. Often there at fibroids that show on ultrasounds and most times there are not cancerous. Let's hope that is her case. Still the other masses are very concerning I agree. I am just trying to hope against some odds for her (and you) right now.

    When she sees her dr on Friday have her talk to them about her anxiety. Maybe she needs a different med or dose if it is not helping. She has so many worries right now it is not surprising she doesn't want to eat and is worried about keeping it down. You are right she does need to try to keep up her strength. See if you can tempt her with just little meals, snacks even. Just to get something in her.

    Please keep us update and we will try our best to share our experiences with you and try our best to answer yours and your mom's questions the best we can.

    Also sending you a private message.

    Jodie
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same

  3. #3
    She'll be given tests before the surgery to make sure she's well enough for it. It is a big surgery, but it's very do-able. There isn't any way to get a sample of the growths without doing the surgery. After the pathologists have analyzed everything they remove, then she'll know exactly what she's dealing with.

    The loss of appetite and nausea are very typical of ovarian cancer and other conditions which mess with the abdominal organs. I'm hoping she'll feel much, much better after the surgery. After my surgery I felt like a million bucks, and I hope that's what she'll experience. For now, if she can keep her fluid intake up that will help her, especially if she can sip on things that have some calories and nutrients in them, such as milkshakes, soup, fruit juice, etc. I have a lot of trouble with eating, but I can usually keep sipping on nutritious fluids all day long. Also, if you get dehydrated that will make the nausea worse and cause other symptoms as well.

    If it does prove to be ovarian cancer, there are about two dozen sub-types of it, and each one is different. So you really do need to just wait and see what the pathologists find and try not to worry about it until then.

    Please keep in touch with us! I'll be sending her my best thoughts on Friday!
    Diagnosed with stage 2c papillary serous cystadenoma borderline malignancy of the ovary in 2009. Hysterectomy, omenectomy, appendectomy, debulking.
    - 2010 - laparoscopy showed inoperable recurrence, so started chemo.
    - Frontline chemo - carboplatin and cyclophosphamide, six cycles
    - Additional chemo regimens: Avastin - ten cycles; Weekly Topotecan - 4 cycles.
    - Spring 2012 developed pleural nodules. Topotecan plus Avastin - 1year.
    - April, 2014, had surgery to remove Aspergillus infection from right lung.
    - September, 2015, started on Megace because my tumors are PR positive. Stopped Megace after three months.
    - September, 2016, hospitalized for shortness of breath and back pain.
    - September, 2016, respiratory failure reversed with prednisone. Maintaining on 50 mg Prednisone per day and supplemental O2.
    - October, 2016 left hospital with no supplemental oxygen. Feeling great! Will start tapering off the prednisone Oct. 10.

  4. #4
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    Thank you so much for your replies. She had surgery on Friday and we've spoken with the doctor. She had a very heavy tumor load in her abdomen, and they had to remove all reproductive organs, resection her colon in 2 areas, remove her spleen, and remove many small tumors that were implanted throughout the lining of her abdomen. He said it is definitely cancer, either ovarian or peritoneal. It seems that they are very similar cancers. She has been in the ICU since and we are hoping for more details once the pathology comes back in 2 weeks. I'm trying to look up information on treatment, but the constant quoting of survival rates for similar scenarios are making it very difficult....

  5. #5
    Thank you so much for the update. It's really too soon to look for information on treatment, because you still don't know what it is. Really -- you do have to wait for the pathology report. Then you can zero in on what she does have and you can stop worrying about all the things it might have been.

    Survival rates are just statistics. They really have no meaning at all for individuals. The only helpful information I've gotten from them is that the longer you survive the better your chances of being one of the people who survives a long, long time. So you take it one day at a time and from day to day you do what you need to do for now -- such as drinking lots of fluids so you don't get dehydrated, calling your doctor if something new starts happening instead of waiting a month to see if it will get better, etc. All we can do is take it one small step at a time.

    Survival statistics include all people diagnosed with a cancer. It includes patients who refuse surgery and it includes people who never get any chemotherapy. A rather shocking study came out several years ago saying that a large portion of ovarian cancer patients over 65 never get any chemo. That really skews the numbers, because chemo works. It includes people who have many other debilitating medical conditions. If we could pick through the cases involved and throw out all of the people whose situations are very different from ours, the picture would look much better.

    The five-year survival rates are just a standard statistic used for all cancers. It's a very general way of comparing one cancer to another. Imagine that you were a lobbyist for an ovarian cancer charity, going to Congress to ask for funding for ovarian cancer research. You would use those statistics to illustrate the need for more research. If you gave a talk to people who have ovarian cancer, you would not talk about survival statistics. You would talk about promising new treatments and about strategies that help people complete their treatments successfully.

    Please keep in mind, the five-year survival statistics are five years old! There are a number of new treatments available now which were not in use five years ago. They have not replaced the standard treatments, but they are making a difference when added to the standard treatments or used as a follow-up to standard treatment.

    If it does prove to be ovarian cancer, you still need to know which sub-type it is. Is it high grade or low grade? Serous or mucinous? Clear cell? Sertoli Leydig? and I could go on and on. You'll find the people in this forum often say waiting is the hardest part -- once the doctor recommends a treatment all you have to do is show up for it. Before that happens we spend weeks waiting for scans and tests and reports. I wish I could give advice about how to make the waiting easier, but I've never gotten good at it myself.

    In very, very general terms most ovarian cancer patients receive 6 treatments of a platinum drug (carboplatin or cisplatin) and a taxane (usually taxol, sometimes taxotere) at 3 week intervals. (Those are the drug names in the U.S. -- if you're not in the U.S. the names may be different.) That totals 4 months of treatment. This is the Gold Standard treatment, the best they've come up with so far. At the end of the four months, 80% of the patients are NED, which means they have No Evidence of Disease. Their CA-125 is normal and CT scans show no growths. The 80% who have such an excellent response to the treatment include people who had very advanced disease at diagnosis. It's "normal" for ovarian cancer to be advanced before it's diagnosed, so your mom's metastases do not really set her apart.

    They've been doing a lot of tweaking of the standard treatment in recent years, for instance treating with smaller doses weekly instead a large dose every three weeks, or injecting the drugs into the abdominal cavity instead of giving them intravenously, etc. It depends on the patient, and you won't know what applies until your mom's oncologist decides.

    The patients who are NED after those four months of frontline treatment then get on with their lives. They are well. Some of them never have a recurrence and are cured. With ovarian cancer, unfortunately, the majority do recur at some point. Then the strategy changes, and chemotherapy is used mostly to reduce symptoms so the patient can feel well and live a normal life. Some do go into remission again, and some even go into remission a third time after a second recurrence. But usually for people with "progressive disease" it's a matter of managing the cancer as a chronic disease. That sounded horrible to me when I was first diagnosed, because I was used to being healthy and never needing medical care. Now I'm in my 7th year after diagnosis. I never had a remission. So now managing it as a chronic disease sounds fine to me. My doctor is good at it. I'm living a quite normal life -- I live alone and do everything for myself except needing a ride home from the doctor's once every year or two when they've done a procedure involving happy drugs. A friend of mine is in her 21st year after her ovarian cancer diagnosis and has progressive disease. We are not average OC patients, but when we go to an ovarian cancer support group and say we've survived that five-year mark nobody's jaw drops. There are a lot of long-term survivors around.

    I know you need something to do right now, so you could look around the forum and see if someone can advise you on what your mom may need to do differently because her spleen has been removed.

    Another thing you could do is talk with your mom's relatives about other family members who have had cancer. Her children, her siblings, her parents, grandparents, and her aunts and uncles on both sides of the family. What kind of cancer did they have, and how old were they were diagnosed? When things have settled down, it's a good idea to share that information with her doctor. And with your doctor as well.

    The reason the family history is important is there are new treatments under development which target specific genes. The most important genes discovered so far are called BRCA1 and BRCA2. Those genes help our cells repair mistakes in our DNA. If a BRCA gene is mutated, it increases the risk of getting some cancers. The BRCA genes were first discovered in breast cancer patients, and then the researchers found that BRCA mutations also increase the risk of getting ovarian cancer, prostate cancer, and I think pancreatic cancer (my memory is sketchy about the pancreatic cancer link). The test for the BRCA gene is not hard on the patient -- I think they just draw a little blood --but it is a very expensive test, so the insurance companies have been reluctant to pay for it unless the family history shows people in the family have gotten the cancers linked to BRCA mutations.

    For now, BRCA mutations are in the spotlight, but researchers are hot on the trail of other mutations which might provide cancer drugs a vulnerable target. There's a new melanoma drug on the market which targets a mutation in the BRAF gene, and it's making a huge difference for some melanoma patients. Some ovarian cancer patients have BRAF mutations, and trials are being done to see if they respond to the drug.

    Anyway. I'm so glad they were able to remove all those tumors! She's had a big surgery and it will take time to recover, but I'm betting she'll feel better with all that stuff gone. That's what I experienced, and mine was not as extensive as hers. Even though I have progressive disease now I feel much, much better than I did before my surgery. I hope she'll have a good recovery, and please keep updating us!
    Diagnosed with stage 2c papillary serous cystadenoma borderline malignancy of the ovary in 2009. Hysterectomy, omenectomy, appendectomy, debulking.
    - 2010 - laparoscopy showed inoperable recurrence, so started chemo.
    - Frontline chemo - carboplatin and cyclophosphamide, six cycles
    - Additional chemo regimens: Avastin - ten cycles; Weekly Topotecan - 4 cycles.
    - Spring 2012 developed pleural nodules. Topotecan plus Avastin - 1year.
    - April, 2014, had surgery to remove Aspergillus infection from right lung.
    - September, 2015, started on Megace because my tumors are PR positive. Stopped Megace after three months.
    - September, 2016, hospitalized for shortness of breath and back pain.
    - September, 2016, respiratory failure reversed with prednisone. Maintaining on 50 mg Prednisone per day and supplemental O2.
    - October, 2016 left hospital with no supplemental oxygen. Feeling great! Will start tapering off the prednisone Oct. 10.

 

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