From 1A to IVa - Endometrioid Carcinoma with Squamus Differentation
Atypical cells found in pap smear late 2020. I couldn't tolerate the pain of uterus scrapings, so I opted for outpatient procedure to have biopsies done. They were clear. Followups all clear until this year. Endometrial lining was 13mm. Opted to have total hysterectomy instead of more biopsies. Had the laparoscopic procedure. OB/GYN had gyn-onc on call in case it was cancer. Long story short, it was cancer. Gyn-Onc opted not to do anything at that time. Thought it was Stage 1A. Surgery was 3/21/22. (To date, I never had a CT or PET scan.)
Two weeks later, final pathology report indicated 64% invasion, so now I'm at 1B. Gyn-Onc gives me option of CT scan or another surgery, the surgical procedure would be more accurate, so I opted for it. Had to wait for opening in schedule for 2nd surgery - sentinel mapping. I had that procedure on 4/28/22. The sentinel lymph nodes took the dye. He found one mildly enlarged right external iliac lymph node that was sent to be biopsied. He said he also found one "small nodule" that didn't indicate cancer.
He did put a rush on the pathology report and said he hoped to have it the beginning of this week.
A lymph-something specialist physical therapist from the hospital happened to call me this afternoon to give me some information that I should have been given before I was discharged. Before she gave me the care info for the missing lymph nodes, I asked her if she could check to see if my report was in. Yes, it was. She couldn't email it to me, but she could read it to me. She double-checked my DOB and doctor, so I know the report was mine.
Sentinel lymph node mapping - both nodes negative
Mildly enlarged Iliac Node - negative
And then she said, "Oh, but it also says one more thing... metastasis carcinoma to bladder."
SO, I'VE GONE FROM STAGE 1A TO STAGE 4A IN A MONTH. I AM FLOORED.
My doctor still hasn't called. I called him immediately, but they had closed for the day.
I'm thinking I have about 7 months to live. If I only have 7 months, I'm not sure I even want to do chemo, etc. I've been reading this board for awhile and know many have faced worse than this.
Thank you for reading. Just needed to vent to someone who would understand.
Rhonda
Comments
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A cancer diagnosis is always shocking, especially when you believe it's been caught early during surgery and then find out it's a later stage (happened to me too).
And it's common to focus on the worst of statistics when we're diagnosed. But the mystery of why some women respond well to treatment, even at a late stage, and others succumb to their cancer, although diagnosed early, is still being researched. And there are new treatments being developed quite often now, beyond the traditional chemos. The statistics you read in medical journal articles are usually based on years past, when these new treatments weren't available.
So don't write yourself off so quickly. Talk with your doctor and find out what the next steps are. Ask for some genomic testing on the pathology samples, if not already done, and include genetic testing to determine if you've inherited any specific mutations that have been shown to respond well to immunotherapy.
And I'm proof that conventional chemo and radiation can still work, even when diagnosed with a rare, aggressive form of uterine cancer.
Let us know what the doctor says and ask any questions here that you might have. We want to support you at this difficult time.
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Oh Rhonda, I hope you get a hold of the doctor today and ask them what you need to do. Please let us know what they say and what the plan is.
Hugs dear.
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Rhonda I'm so sorry to read what you are going through. A second surgery would have been really hard, but it sounds like it was your staging surgery. I hope you are able to talk with the doctor today. We had a member who was IVB and she survived 7 years so don't write yourself off. It is strange that a Physical Therapist would give you your pathology report. I don't think your doctor will be very happy about that. Hugs to you.
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Dear Rhonda,
Hopefully by the time you read this you will have spoken with your doctor. I have to echo CMB here. We just never know where this disease will take us. I had been given a pretty rosy prognosis when I was first diagnosed with what is referred to the "garden variety" of cancer. But I've recurred numerous times and I'm still living with cancer 8 years (May 30) after my initial diagnosis. No one, including my oncologist, expected I'd be doing as well as I am right now. Do not believe that you have 7 months left of your life. At this point nobody knows your "expiration date" and if they say they do they're lying.
Jan
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(deleted bcz double post)
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Regret to say -- it's officially a IVB.
In the wee hours of the morning, my patient portal had the final pathology report results. It was Stage 1 B -- pT1b(pNO)(sn). Everything was negative – except that 1 nodule the dr found on the bladder. Path report said LEFT BLADDER PERITONEUM IMPLANT, BIOPSY: Metastic carcinoma.
I found via Google a staging chart that stipulated regarding bladder, “bulbous edema is not sufficient to classify a tumor as pT4” so I thought I had lucked out.
Gyn-Onc called this morning and sounded dire. He told me what report said. I told him I had seen the report, but even with the bladder biopsy, the revised staging was Stage 1B. He said that this was obviously a mistake, and that he would call the pathology lab and have it amended. (Since then, the report has vanished from my patient portal, but I did keep a copy on my computer.)
Dr said this case is strange and he’s never seen one like it. Typically, he said Stage 4B has mets all over. Everything else was clear – lymph nodes, washings, etc. I told him that we don’t know if everything is clear because initial report indicated extensive LVSI which meant chances for distant mets high, and I’ve never had a CT or PET scan.
“Oh, I was going to suggest that next.”
Anyway, he’s sent the case to the tumor board that is meeting Friday. I should know results after noon. Meanwhile, I’ll have CT scan, and those results will be available to tumor board. After we have results, there will be video conference with findings.
Meanwhile, I’ve registered with MD Anderson. They’re on it. I’ve sent insurance info and preliminary data just verbally – everything that has happened. They will send for medical records tomorrow, including tumor board findings when they are done, and then call me back to schedule appt. (They also want paper report and CD of images for CT scan tomorrow. She said don’t leave without them :)
MD Anderson representative indicated that they can’t do anything until 2 weeks after my last surgery, and that will be 5/16. If there will be treatment, we need to get on it right away. From what I’ve read, there’s a significant advantage to treatment started before 9 weeks than afterwards.
I feel I’m in good company, and although I may not know you all, I love you already! You got me proactive and making progress when I was planning my own funeral. I can’t thank you enough. We'll see what happens. Meanwhile, my job is to get CT scan done (with papers and CD of images tomorrow) and just keep a clear head until Friday. Easier said, but doable.
Rhonda
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You have handled all this so well. Your journey has been difficult having TWO surgeries. Yes, be proactive. It seems things are being handled well now after a rough start. Good luck on your scans. You are in good hands.
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Thank you for your kindness and encouragement.
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Yes, it was incredibly unprofessional. However, I asked for it. She still shouldn't have done it, but she sounded young, and I didn't want to cause her employment issues, so I didn't mention it to the doctor. I didn't think if it was that bad that she would tell me. :)
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Rhonda, I'm very sorry to hear that your diagnosis has been upstaged from 1A to 1B to 4B. I see that you've reached out to MD Anderson for another opinion, which I think is a very wise decision. I'm assuming that MDA will be doing a second pathology review of everything that was removed during both of your surgeries. I believe this is essential in your case.
Here's a link to information about second opinion pathology at MDA, which I suspect you've likely seen and is probably already in the works, but I'm including it just in case: https://www.mdanderson.org/for-physicians/refer-a-patient/second-opinion-pathology.html
Good luck!
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I had CT scan this morning and have the imaging CD ready for MDA. They are doing report and and then supplying to Tumor Board for tomorrow's meeting. Registered for them to use "Power Share" to share all data back and forth with MDA. They said they do this all of the time.
Meanwhile, I just got off the phone with MDA. They are doing the second opinion pathogy. My new patient appt is Wed thru Friday of next week.
The ball is in motion. What a week.
Thank you for the wise words, and I very much appreciate the info. If MDA wouldn't have already scheduled the 2nd path report, I'd absolutely be right back on the phone with them this minute because I surely wouldn't have known to ask - :)
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:Hi, Rhonda! What a shock it must have been to get that news. I'm glad you're pursuing a second opinion so quickly, and hope your treatments go smoothly and obliterate all that cancer!
For what it's worth, I was Stage 1a at first diagnosis in 2012. Surgery and brachytherapy, all clear. Had a CT for hip pain two years later, still clear. However, at 6 years post diagnosis, I was discovered to have a recurrence. Pelvic mass invading the hip joint as well as mets to both lungs. This time I had external radiation and chemo (Carbo/Taxol). The pelvic mass is still there, but possibly only scar tissue at this point. It's been 10 years since my original diagnosis and four years since the recurrence, and I'm still here. Go fight!
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Rhonda, I'm sorry for all you're going through but VERY glad you've made an appointment at MDA. You want to be associated with a top cancer center right now, if possible.
I was initially diagnosed Stage 1A, then after surgery, Stage 2 with "suspicion" of LVSI. Like you, my lymph nodes were all clear. It's a long story, but the upshot is that when a radiologic oncologist finally ordered the PET scan I'd been asking my gyn oncologist for since surgery, it turns out I had mets in my lungs -- Stage 4B. All this happened for me in a few months and it felt like my head was spinning. Mine spread via blood vessels (LVSI), as yours may have as well. My first oncologist, who I fired the minute she announced I had mets in my lungs by saying, "You're killing me here!"-- she told me I would be lucky to have a year.
That was 4.5 years ago. I went through chemo and radiation and then was on hormone therapy for three years. I am NED and my oncologist is feeling hopeful that I have a while yet. Who knows, maybe I do, maybe I don't, but I've had years I wasn't expecting. I live a normal, active life.
Don't write yourself off. Work to get the best care you can afford and travel to, as it seems you are, and keep in touch with us here. We're all here for you and we'll do what we can to help.
Tamlen
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Dear TAMLAN:
What an amazing journey you've had this past decade and very inspirational. You sound very positive and a fighter! Our stories are so similar. I'm "LVSI Extensive" so they're probably going to find mets -- we can be twinsies :) I hope time proves that I can have an attitude half as good as yours.
I'm prayerful at this point and looking forward to tumor board results tomorrow and then MDA next week.
Praying for us all!
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Dear Fridays Child,
10 years -- that is amazing. I love hearing all these success stories. Yours is incredible. I'm so glad you're doing well and have beat all odds.
rhonda
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Dear Rhonda,
I’m so sorry to read what’s happening with you, but I’m very glad you found us!
I’m a little confused about your diagnosis and how you went from Ib to IVb. So, the Ib was a typo? And you wrote that tumor was “on” your bladder, like, not involving/invading your bladder? I ask because I was diagnosed (after an unfortunate two surgeries, like you) Stage IIb. First surgery found small tumor inside Fallopian tube and four little spots outside and near with positive peritoneal wash. Second surgery: 4 tiny tumors (clearly present, but unseen and left behind in the first surgery by the incompetent GYN) embedded in ancient endometriosis tissue….one near vaginal cuff, one on rectum, one on “bumper” of my colon, and one on my bladder. While removing the one on my bladder GO said the tissue was very thin and he put stitches to reinforce. I had to spend the night and go home with a catheter bag and drug it around for a week. Radiologist scanned bladder to be sure healed and I got the catheter out. I was still considered Stage IIB because nothing had spread outside of my pelvis. My type of cancer was different than yours, but sounds like location might be similar? I didn’t have any LVSI. So, that’s why I don’t understand the Stage IV. Them thinking there will be extensive mets and them actually being there are 2 different things! Try not to panic if you don’t have an absolute reason to! 😘
So, like our other friends here, I think you have great reason for hope! Many long term survivors around here! It kind of sounds like you were getting inaccurate information and definitely needed to reach out to MDA.
Keep letting us know how you’re doing.
🙏🏻❤️, A
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How are you doing Rhonda. Any plans from MD Anderson?
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