Recurrence stories
Comments
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Trash can fireevolo58 said:CA-125 test
Right before, I had a wicked attack of either IBS or divierticular-related issues, brought on, I believe, solely from extreme stress ... a diagnositc mammo (thankfully, benign, but I found that out right before my post-endometrial-cancer checkup), dealing with the IRS on behalf of my mother (Stressful? Nah
....), dealing with state income tax issues on behalf of my mother, and of course, the endometrial checkup ... all within about a three-week time span. This was scanxiety amped to 11.
But other than that, no symptoms I would find concerning, and everything pretty much subsided by my appointment. So imagine my surprise when the CA-125 was 770. My ORIGINAL CA-125 after my diagnosis was 127! The .... blank?
It turned out that a chunk of it was due to the Bowels from Hell episode. A chunk, however, was not. While I had no lymph node involvement at first-line, it seems a few of them are agitated now, and the lower-right-quardrant watch and wait was starting to smolder like a trash-can fire ... enlarged nodules. Enlarged nodules in one or two other places as well.
So much for the watch and wait. I still strongly believe it shouldn't have been, and perhaps an extra chemo or two back then might have been wise. I remember being uneasy in July, a month after my last first-line chemo. The increased CA-125 was in October.
So my only concerning symptom ... the CA-125.Starting to smolder like a trash can fire...I LOVE that characterization. Much better that than a full-on dumpster fire, ha!
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CT found my recurrence
Hi, new member but have lurked for about a year. I was diagnosed in Jan 2017, endometrial adenocarcinoma, stage 1a grade 2. LVI 'strongly suspected'. I had davinci total hysterectomy Feb 2017, then 5 sessions of brachytherapy. I asked about chemo, and was advised the side effects outweighed the benefits for grade 2. I hadn't researched enough at that point to be scared by the LVI note.
In Nov 2017, I started having sciatica pain, identical to a previous bout, and since I had been moving furniture, I didn't think much of it. I had a yearly follow up CT in Feb 2018 that showed mets to lungs, one aortic lymph node and bone mass on my ischium pelvic bone (the sciatica pain). I have never had any symptoms related to the lung or lymph tumors, and feel the CT found problems much sooner than waiting for symptoms. I now also don't assume a new pain is just some trivial thing, although most times it is.
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LJS908Ljs908 said:CT found my recurrence
Hi, new member but have lurked for about a year. I was diagnosed in Jan 2017, endometrial adenocarcinoma, stage 1a grade 2. LVI 'strongly suspected'. I had davinci total hysterectomy Feb 2017, then 5 sessions of brachytherapy. I asked about chemo, and was advised the side effects outweighed the benefits for grade 2. I hadn't researched enough at that point to be scared by the LVI note.
In Nov 2017, I started having sciatica pain, identical to a previous bout, and since I had been moving furniture, I didn't think much of it. I had a yearly follow up CT in Feb 2018 that showed mets to lungs, one aortic lymph node and bone mass on my ischium pelvic bone (the sciatica pain). I have never had any symptoms related to the lung or lymph tumors, and feel the CT found problems much sooner than waiting for symptoms. I now also don't assume a new pain is just some trivial thing, although most times it is.
LJS908
I'm so sorry to hear of your recurrance. Would you mind providing a little more info about your cancer? Did you have a positive pelvic wash? Did you test positive for P53? Any genetic testing done for Lynch? Do you know the size of your tumor and percentage of myometrial invasion? Also, how old were you when diagnosed? What type of treatment are you receiving for your recurrance? Most importantly, how are you feeling?
I too an Grade 2, stage IB. I'm sorry you are going through this.
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HelloLjs908 said:CT found my recurrence
Hi, new member but have lurked for about a year. I was diagnosed in Jan 2017, endometrial adenocarcinoma, stage 1a grade 2. LVI 'strongly suspected'. I had davinci total hysterectomy Feb 2017, then 5 sessions of brachytherapy. I asked about chemo, and was advised the side effects outweighed the benefits for grade 2. I hadn't researched enough at that point to be scared by the LVI note.
In Nov 2017, I started having sciatica pain, identical to a previous bout, and since I had been moving furniture, I didn't think much of it. I had a yearly follow up CT in Feb 2018 that showed mets to lungs, one aortic lymph node and bone mass on my ischium pelvic bone (the sciatica pain). I have never had any symptoms related to the lung or lymph tumors, and feel the CT found problems much sooner than waiting for symptoms. I now also don't assume a new pain is just some trivial thing, although most times it is.
Hi Ljs,
Gosh your story sounds sort of similiar to mine...check out my 'about me' page. Amazing how endometrial cancer even when staged 1a it still can spread. The little beasts are so darn tricky. I think the guidelines need to change and more importance placed on the LVSI and if positive then chemo / radiation should be a given. I will always wonder if chemo had been done right after my hyster if that may have prevented my cancer from spreading. But here I am now and doing ok so I have to live in the here and now!
Anyway how are you doing? Did they decide on some chemo for you? So glad you had the CT and the mets were found so that treatment could be started to stop the progression. All the best and let us know how you are doing?
Lulu xo
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Welcome and thanks for adding your storyLjs908 said:CT found my recurrence
Hi, new member but have lurked for about a year. I was diagnosed in Jan 2017, endometrial adenocarcinoma, stage 1a grade 2. LVI 'strongly suspected'. I had davinci total hysterectomy Feb 2017, then 5 sessions of brachytherapy. I asked about chemo, and was advised the side effects outweighed the benefits for grade 2. I hadn't researched enough at that point to be scared by the LVI note.
In Nov 2017, I started having sciatica pain, identical to a previous bout, and since I had been moving furniture, I didn't think much of it. I had a yearly follow up CT in Feb 2018 that showed mets to lungs, one aortic lymph node and bone mass on my ischium pelvic bone (the sciatica pain). I have never had any symptoms related to the lung or lymph tumors, and feel the CT found problems much sooner than waiting for symptoms. I now also don't assume a new pain is just some trivial thing, although most times it is.
I am so sorry to hear that your cancer has spread. I was dx in July if 2018, 1a UPSC which is grade 3 with LVSI. I had 4 chemo, 3 brachy. Am NED as of November 2018 scan. I think people's stories are invaluable. Anecdotal, sure, but at least we are educating one another on differing treatment protocols and experiences. I have so much knowledge due to others sharing. Glad to meet you and please don't hesitate to continue sharing.
xxoo
Denise
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More info
Glad I decided to finally post something, it's very nice to have feedback. Thank you!
I was 57 when originally diagnosed, had not officially gone into menopause. I had some spotting but figured it was part of the menopause process. A good friend said she had something similar and pushed me to go to the doctor, thank God. The path report has multiple dimensions, anterior and posterior, but I remember the diagram after an ultrasound showing the uterus completely filled. Myometrial invasion <50%.
The pelvic wash was atypical. Negative for lynch and p53 (I wasn't familiar with that term, but google searches matched up the info for me.) I did 6 rounds of carbo/abraxane, completed in Jul 2018. CA-125 was down to 17. Started letrozole. Foundation One testing showed an mTOR inhibitor would help. We fought the insurance company to get approved for everolimus/affinitor, but got denied. Had 10 external radiation treatments for bone mass in Oct 2018, and have been pain free since then. Which is awesome...
In Nov 2018, my CA-125 went back up to 80, the tumors got larger again, and my oncologist got me approved for temsirolimus/ torisel, an mTOR inhibitor done via infusion. I've been on it weekly since mid Nov, a CT last month shows 30% decrease in tumors, so it's working. The side effects are manageable. I feel pretty good, am back on procrit for low hemoglobin. I decided to try short term disability this time, have been on it since end of January. I'm conflicted about not working, but the greatly reduced stress and not being in the car 2 hours a day is a huge benefit.
Lulu, our stories are very similar. I also wonder if chemo right after the surgery would have stopped the progression, but can't dwell on it. How are you doing on the everolimus?
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Dear Ljs
Dear Ljs
Welcome to the board! It must have been such a shock to have a recurrence after Stage 1A. I am so sorry you experienced all that. Mine was Grade 1 Stage 2 (less than 50% myometrial invasion, some cervical invasion) but with a positive pelvic wash and I also had a recurrence 3 months after my hysterectomy. So I can relate to the shock. Glad to hear you are responding well to mTOR inhibitor. I cannot believe you got denied by the insurance the first time around. I wish there was a way to keep them accountable for the bad decisions they make. Can you not sue them? Metformin is also an mTOR inhibitor, is it not? Maybe it is something to consider as a maintenance drug once you are done with the mTOR inhibitor via infusion.
Wishing you all the best!
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Insurance has been doing this a LOT lately
Anything for profits. I feel queasy whenever they so much as imply that they're doing this for my benefit. Yeah, right.
In my case with my progression (happened within four months after my last chemo in June, so well within the year, and there was concern about a small patch of possible cancer in July. The radiologist was right; the doctor was not):
Doxil ... approved.
Avastin with Doxil ... denied. (I'm under compassionate use.)
Neulasta ... denied.
CT scan at my local hospital ... denied. (Managed to get one approved and scheduled for tomorrow at an outpatient facility after much delay. Prayers and good wishes really appreciated, thanks!)
Last year, at first-line, I don't recall insurance being this much of a pain with me or just about all of you here. Maybe a couple of issues, but not nearly as many.
It is stressful enough dealing with cancer without battling insurance companies. The patient/doctor relationship seems to be patient/doctor/insurance now.
I am still waiting to see if I can get on Vitrakvi. According to Bayer/Loxo, they are supposedly working with insurance companies to cause as litlte hassle for patients, doctors and insurance companies as possible. We'll see if they pull it off. I know I need to be patient. But yes ... I'm looking nervously at the insurance company.
It's gotten to the point when if there is a delay concerning an aspect of my treatment, my first thought is, "It's the !@#$ing insurance company again, isn't it?" Sadly, I've been right most of the time. And I've heard and read that other companies are following suit. If one company gets away with this nonsense, others try it next.0 -
Thanks for asking!Ljs908 said:More info
Glad I decided to finally post something, it's very nice to have feedback. Thank you!
I was 57 when originally diagnosed, had not officially gone into menopause. I had some spotting but figured it was part of the menopause process. A good friend said she had something similar and pushed me to go to the doctor, thank God. The path report has multiple dimensions, anterior and posterior, but I remember the diagram after an ultrasound showing the uterus completely filled. Myometrial invasion <50%.
The pelvic wash was atypical. Negative for lynch and p53 (I wasn't familiar with that term, but google searches matched up the info for me.) I did 6 rounds of carbo/abraxane, completed in Jul 2018. CA-125 was down to 17. Started letrozole. Foundation One testing showed an mTOR inhibitor would help. We fought the insurance company to get approved for everolimus/affinitor, but got denied. Had 10 external radiation treatments for bone mass in Oct 2018, and have been pain free since then. Which is awesome...
In Nov 2018, my CA-125 went back up to 80, the tumors got larger again, and my oncologist got me approved for temsirolimus/ torisel, an mTOR inhibitor done via infusion. I've been on it weekly since mid Nov, a CT last month shows 30% decrease in tumors, so it's working. The side effects are manageable. I feel pretty good, am back on procrit for low hemoglobin. I decided to try short term disability this time, have been on it since end of January. I'm conflicted about not working, but the greatly reduced stress and not being in the car 2 hours a day is a huge benefit.
Lulu, our stories are very similar. I also wonder if chemo right after the surgery would have stopped the progression, but can't dwell on it. How are you doing on the everolimus?
Hi Ljs,
Doing ok on the everolimus but still have some active disease in my lungs so doc is presenting my case to the tumor board for recommendations. I suspect next steps will be a clinical trial. She mentioned some with immunotherapy and chemo. So I wait to hear what they recommend.
The side effects of the everolimus have been managable. Thankfully using the dexamethasone mouth rinse and a marshmellow pillow technique to swallow the pill have prevented mouth ulcers which is a very common side effect. Some back pain and groin pain that responds to aleve...we aren't sure if its the mets or the meds....hard to know.
Glad to hear the mTOR inhibitor is working for you. I did try to work but the stress I am sure didn't help my disease so decided to retire. Thankfully my husband is still working and he carries our health insurance. If you can milk the short term disability for as long as your company will allow and if they have long term disability I would try and do that. Just my two cents.
All the best and keep in touch. Praying for continued decrease in your tumors. xoxo
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What was your treatment?Denise66 said:I’m stage 1b, grade 2. My doc
I’m stage 1b, grade 2. My doc is recommending scans of the chest, abdomen and pelvis at 6, 9 and 12 months. I’m not sure after that. I just a little over 7 months out from my surgery. It really just depends on your dOf and his/her protocol.
I'm curious because mine will be brachytherapy, 3 sessions intermediate radiation. I'm stage 1a, grade 3 for adenocarcinoma. Not sure what comes after that. I only know I have a followup with my gyno oncologist in August, which will be 4 months after hysterectomy.
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A few months laterLulu7582 said:Thanks for asking!
Hi Ljs,
Doing ok on the everolimus but still have some active disease in my lungs so doc is presenting my case to the tumor board for recommendations. I suspect next steps will be a clinical trial. She mentioned some with immunotherapy and chemo. So I wait to hear what they recommend.
The side effects of the everolimus have been managable. Thankfully using the dexamethasone mouth rinse and a marshmellow pillow technique to swallow the pill have prevented mouth ulcers which is a very common side effect. Some back pain and groin pain that responds to aleve...we aren't sure if its the mets or the meds....hard to know.
Glad to hear the mTOR inhibitor is working for you. I did try to work but the stress I am sure didn't help my disease so decided to retire. Thankfully my husband is still working and he carries our health insurance. If you can milk the short term disability for as long as your company will allow and if they have long term disability I would try and do that. Just my two cents.
All the best and keep in touch. Praying for continued decrease in your tumors. xoxo
Hi, have not been on the board for a while. Still doing weekly torisel treatments which started in Nov. I'm due for another CT in June to see what's happening. My CA-125 has been staying low, but side effects slowly ramping up. Still manageable though.
Lulu, I saw on a different thread that you were in a clinical trial. How are you doing?
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Late recurrence
Originally I was diagnosed with stage 1a, grade 1 endometrioid adenocarcinoma. Robotic hysterectomy followed by brachytherapy. Positive pelvic wash. 23 lymph nodes were clear. I was 56 at the time.
I had some hip pain prior to the hysterectomy. After several checkups when the hip pain had continued, they ordered a CT scan, which was clear. So as it continued off and on, and I continued to report it, we all just assumed it was arthritis or something. Activity helped relieve it. All the assorted doctors said if it comes and goes, it's not cancer. Eventually my cancer center released me and I went to a new regular gyn, my prior one having retired. When I continued mentioning the hip pain, he suggested seeing ortho. When the x-ray was negative, he sent me for an MRI, which revealed a pelvic mass invading my hip joint.
While we were trying to get a PET scan approved, they were planning my treatment, discussing chemo, radiation, or hormone treatment. When I finally got the PET scan it showed mets in both lungs in addition to the pelvic mass. (They went back to the old CT scan from four years earlier and still found nothing on it.) At this point they decided I should have low dose chemo concurrent with radiation, followed by full dose chemo. That was completed about a year ago, and then they put me on letrozole for maintenance.
So far scans have showed continued improvement, but "can't rule out cancer." Insurance won't approve a PET scan at this point to check for active disease so as far as I know, it's either dead or smoldering (to continue the trash can fire analogy from above
).Like you, evolo58, I am very nervous about my insurance. I'm supposed to have an MRI, which was scheduled two months ago. It had to be cancelled because it hadn't been approved or denied as of the day before it was scheduled. Three hours after I should have had it, they got the approval, so now it's two more weeks of scanxiety!
But please, never let anyone tell you that intermittent pain is not cancer!
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Thought I was in the clear
I was diagnosed in 2011 with what turned out to be stage 3 endometrial cancer. Underwent a total hysterectomy, oophectomy, and removal of lymph nodes. Went through 6 rounds of carboplatin/pacilataxel. Did screenings every three months, then six months, then annually. Celebrated 5 years NED With my wonderful gyn onc. In 2018, had a strange discharge and went in to discover the cancer was back on the vaginal cuff. Went through 5/6 rounds of external radiation then 3 days of immobility while undergoing brachytherapy. Began the exams and tests again, all clear. On my 6 month exam which was to be my release to annual visits, X-rays captured spots on the lung. I have now undergone a lung wedge sectioning and 2 sessions of doxilrubicin/paclitaxel with 4 more to go. Came to this blog since it was a source of information and encouragement before even thought I did not post. Just reading the blogs of those who have gone through what I am going through and knowing there is still hope!
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Sneaky diseaseKddbrad said:Thought I was in the clear
I was diagnosed in 2011 with what turned out to be stage 3 endometrial cancer. Underwent a total hysterectomy, oophectomy, and removal of lymph nodes. Went through 6 rounds of carboplatin/pacilataxel. Did screenings every three months, then six months, then annually. Celebrated 5 years NED With my wonderful gyn onc. In 2018, had a strange discharge and went in to discover the cancer was back on the vaginal cuff. Went through 5/6 rounds of external radiation then 3 days of immobility while undergoing brachytherapy. Began the exams and tests again, all clear. On my 6 month exam which was to be my release to annual visits, X-rays captured spots on the lung. I have now undergone a lung wedge sectioning and 2 sessions of doxilrubicin/paclitaxel with 4 more to go. Came to this blog since it was a source of information and encouragement before even thought I did not post. Just reading the blogs of those who have gone through what I am going through and knowing there is still hope!
i'm so sorry you had to face this thing again after so long being free and clear. I know I'll NEVER feel safe.
You and I had the same type of brachytherapy. For me it was the hardest part of treatment but I don't seem to have any aftereffects.
Good luck and stay tough.
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Welcome Kddbrad. I'm glad you
Welcome Kddbrad. I'm glad you decided to join in the conversation. But, so sorry there is a need to do so. Please keep in touch and let us know how you are doing.
Love and Hugs,
Cindi
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Kddbrad, I am so sorry to
Kddbrad, I am so sorry to hear this. You remind us to always be vigilant. Please keep in touch.
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Pain
I have a high tolerance for pain And I do not take any meds. However when I started getting pain and started to take Motrin a couple of times a week then several times a week until I was taking it daily I knew it was a recurrence. This has happened twice. Also it’s how my original diagnosis started. Having severe pain. Said it was nothing. Had colonoscopy it was fine. Tried to give me antidepressants. It wasn’t until I had my hysterectomy that they found it although I suffered for over a year prior to my hysterectomy
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Kaleena - painKaleena said:Pain
I have a high tolerance for pain And I do not take any meds. However when I started getting pain and started to take Motrin a couple of times a week then several times a week until I was taking it daily I knew it was a recurrence. This has happened twice. Also it’s how my original diagnosis started. Having severe pain. Said it was nothing. Had colonoscopy it was fine. Tried to give me antidepressants. It wasn’t until I had my hysterectomy that they found it although I suffered for over a year prior to my hysterectomy
Can you tell me what the pain was like? Where it was? I'm trying to be vigilant about symptoms, as my gyn/onc said that symptoms appear just as soon as something would be found on a scan. I didn't have any pain or symptoms with my first diagnosis, so I'm not sure what to look for!
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KddbradKddbrad said:Thought I was in the clear
I was diagnosed in 2011 with what turned out to be stage 3 endometrial cancer. Underwent a total hysterectomy, oophectomy, and removal of lymph nodes. Went through 6 rounds of carboplatin/pacilataxel. Did screenings every three months, then six months, then annually. Celebrated 5 years NED With my wonderful gyn onc. In 2018, had a strange discharge and went in to discover the cancer was back on the vaginal cuff. Went through 5/6 rounds of external radiation then 3 days of immobility while undergoing brachytherapy. Began the exams and tests again, all clear. On my 6 month exam which was to be my release to annual visits, X-rays captured spots on the lung. I have now undergone a lung wedge sectioning and 2 sessions of doxilrubicin/paclitaxel with 4 more to go. Came to this blog since it was a source of information and encouragement before even thought I did not post. Just reading the blogs of those who have gone through what I am going through and knowing there is still hope!
Welcome, as one of our beloved members used to say, to the club nobody wants to join. I'm so sorry you have recurred - I know you're thankful for the healthy years between, but my heart goes out to you as you fight again. You'll find support here, and hopefully lots of good information to aid you as you walk out this path. Blessings.
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