Newly Diagnosed Stage 3C1 endometrial cancer grade 1... what to expect?
Hi There,
Well just a short 3 1/2 yrs ago I was my husband's caregiver for his colon cancer which he did pass away early 1021.
Now I find myself in the same situation dealing with cancer but now I am living alone. One would think cancer would jump over me since I already had to deal with it so long prior .
Started spotting during a planned 4 week road trip (Mid Sept).. figured I would take care of when I returned thought maybe it could be a UTI. Right away within a few days of returning end October I got in to see my primary they did a vaginal ultrasound. found no masses but did notice lining a bit thick 1/1 cm referred me to oncologist.. met him Early November he did a biopsy and it came back November 20th as Grade 1 endometrial cancer. He said good news is its slow growing..
Referred me to gyno oncologist Mid December had that appointment and she scheduled me for hysterectomy Jan 8, 2025. She (surgeon) stated oh I don't think you have to worry you reacted quickly and it is a grade 1 cancer so growing I have many that wait for 6 months to a year before they come in and they are still at early stage. She ordered CT scan which showed no spread.
Had surgery 1/8/25 well walla ——— drum roll ——- pathology came back Stage 3C1 grade 1. Which totally floored me as so much for slow growing. Ya, right.. 16 weeks from first spotting to surgery and it's already a stage 3. 4 Sentinel lymph nodes taken at surgery and all came back positive for cancer cells plus she said slight spread to my cervix.
So guess chemo and radiation is in my future. My question is… to get my best care should I go to where my surgeon is the hospital she works out of has their own Cancer institute or she said maybe I would like to go somewhere closer to my home for treatments. She said we are still very much your care team even if you go somewhere else.
So my thought is.. even though it maybe 50 miles farther for me to go to the Cancer Institute where my surgeon and care team is…. maybe that is better then going somewhere out of network that do not really know me or my case per say just to say a bit on millage and time?
I'm tossed.. I would think at the cancer institute where my surgeon and care team already is would be the best place to go plus I could get all my scans their etc when needed.
Am I not thinking this out… Whats everyones thoughts?
Any postiive Stage 3 stories for me? I just dug myself into the rabbit hole and I feel I can't get out.
Thanks everyone.
Comments
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Hi!
I wanted to respond because your post was new. I have just finished 6 cycles of chemo and immunotherapy and will begin immunotherapy alone this week. Surgery was 8/24. Stage 4a. My surgeon and center are only 10 minutes from my house, so I have been lucky. It’s harder to decide on where you will be treated if you have more options. It is nice to be close if the quality of the treatment is equal. If your surgeon can recommend a center closer to you, I would visit and consider. Will the surgeon continue to follow and prescribe your medications? Good luck to you in your decision!
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Hi There thanks for responding.
I think I found the one I want to go to… its one of the ones my husband went to during his initial treatments. Now getting the insurance to cover where I want to go.. that may be a bit harder.
So many decisions to make in such a short amount of time as they want you to start with treatments a few weeks after surgery.
Surgeon never specified if she would be the one prescribing meds etc. It really don't seem like it though I mean she has tons of surgeries and patients to attend to since they are the only gyno oncology facility for about a 500 mile radius.
Good luck in your recovery. How was the chemo.. I know no walk in the park but was it tolerable for you? They pretty much give everyone the same initial chemo cocktail I think. They say chemo followed by radiation for me.
Any radiation in your treatment plan?
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I found it tolerable. I had paclitaxel/carboplatin and a new immunotherapy (Jemperli). It helped to cool my hands and feet during Paclitaxel to help prevent neuropathy. Some cool the scalp to prevent hair loss, though it may only prevent some hair loss. I did not do that, so I lost my hair. It should grow back. I didn’t have major nausea-ate small meals more frequently and stayed hydrated. Exercise and naps help with fatigue and staying close to your friends. Constipation was a problem with carboplatin for me. I used stool softener, Senakot S, fiber and water to help. Swimming, walking, yoga and strength/balance training have been the most helpful. I have a port for chemo and tops that open for port access.
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Hello
I was diagnosed with grade 1 Stage 1 endometrial cancer in September. Ended up with a laparoscopic total hysterectomy in November They took lymph nodes as well. At my 8 week follow up the doctor found a polyp on my vagina and did a biopsy. It came back positive, grade 1 stage 3 Endometriod adenocarcinoma. I thought I was out of the woods with the hysterectomy as my doctor said there was a very small percentage that the cancer would spread. Lucky me I’m in that small percentage! Yay. My gyno tells me the cancer is/ may be in my blood. I have another CT Scan today to determine if the cancer has spread anywhere else. Meantime my doctor and oncologist who did my surgery referred me for radiation. When I met with the radiation oncologist he said he does not think the cancer is in my blood. I hope he is right. Tomorrow I have my Simulation CT Scan to start the radiation treatment. If it turns out the cancer has traveled to another organ it sounds like I will need chemo. I’ve been talking to my good cells and telling them to stomp out the cancer cells. Working on positive self talk. The truth is I am scared of hearing that the cancer has metastasized somewhere else. I feel Iike I am getting mixed messages from the doctors and am thinking of getting a second opinion. We live fairly close to world class cancer centers so perhaps I should do it. What do you think? Should I go for a second opinion?
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Hi There,
I am new to this journey as well. I did have positive lymph nodes involvement so automatically chemo and radiation is in my plan. I felt like I was getting mixed messages as well gyno "Said oh I don't think you have cancer just some thickening of lining) Boom biopsy sent… BOOM… Cancer endometrial Grade 1. referred to surgeon… of all your test and scans (full body CT scan, pelvic ultra sound) ) look like it was caught very early surgery should take care of it. BOOM - surgery pathology comes back.. spread to lymph nodes and cervix. Stage 3C1
I don't think a second opinion is really going to matter much most will probably tell you to do the radiation and having the CT scan you will know more after that. Due to the recurrence so quickly you had after surgery in your vagina. If none of your lymph nodes showed positive then more than likely it probably has not reached your lymphatic system. I'm no doctor by any means. And yes waiting for scans can be terrifying.
I'm just in the process of getting chemo set up and while I hate to have to through this.. I am glad they are going to be aggressive and shoot chemo plus radiation into me so soon after my surgery to hopefully get rid of any cancer cells that may be floating around in my body that are looking for another place to hang out and grow. I am welcoming any treatments that they want to give me this early after surgery I just want to get it over and done with.
Time will only tell for the both of us what transpires. Good luck to you and hang in there.. I totally understand where you are coming from.
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Hello ladies! I am sorry you had to find us because of your diagnosis but I am glad you have found each other because it is always good to have others to talk to.
Reading through, I hope you don't mind my two cents.
Second opinion? Any doctor should understand you wanting to ask for one. You have to love your doctor and you can stay with the first one, but if you want to do it, go for it.
Where to go for treatment? I have a question, is it possible to receive treatment closer to home but visit the gyn onc for check-ins?
This site can be a little quiet, and there are some long-term survivors here who chime in at times with their wonderful wisdom, but know they are out there. Hugs dear ladies. We are cheering for you.
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Hi there,
Been on this journey for nearly ten years with 4 recurrences and will always be on some drug or another. That being said, I live a very active and happy life - details for another time.
I agree with NoTimeForCancer, nothing wrong with getting a second opinion. Also, treatments close to home and checking in with another doctor is also good.
What I really think is important is that you know everything about your cancer and the treatments that are available to treat it, so you can ask your doctors specific questions. They probably won't have time to explain everything, so the more you know, the better questions you can ask and the better you can advocate for yourself. If you call SHARE's helpline, we can give you some good information: 844-582-6005 (toll-free). We have ec/uc specific support groups via Zoom that you can join and many webinars.
Best wishes to you.
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Hi Mercorby,
Ten years??? Well that is a wonderful accomplishment even if you are on some drug or another during that time period. Congratulations! What was your diagnosis if I may ask and what was your initial treatments after surgery? Chemo/Radiation/immunotherapy/hormone therapy or a combo of all at one time or another. I'm a grade 1 so hopefully a bit easier on recurrences but it seems no matter what grade or stage its pretty common for recurrences to happen.
My I asked your general age?
I have researched the internet from beginning to end (paying attention to dates of reports and posts as I go) I swear I have read everything that is listed. Yes can be a downer for sure but then you hear of upbeat stories as yourself that give hope.
Thank you,
Laurie
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Hi Laurie,
It is thanks to the doctors for this success on my journey. This treatment is not an option for everyone with my profile which is a matter of disparity and inequity. Many patients don't even know they are in this category. They are offered more toxic drugs before trying these drugs because they are not part of the standard of care except for "special circumstances." I am 66 years old. Here is my journey in a paragraph.
I have estrogen receptor positive, progesterone receptor positive, HER2 negative, PIK3ca, PTEN, CTNNB1, ms-stable, tumor mutational burden medium, copy number low adenocarcinoma - all in the No Specific Molecular Profile molecular category of ec/uc. I am on the hormonal/metastatic breast cancer treatment journey which has not been highly researched in ec/uc. Treatments & recurrences: hysterectomy and brachytherapy (stage 1 B); recurrence (or rather residual disease) in two pelvic lymph nodes: EBRT and then chemo (only had 4 out of 6 due to bad blood counts), then put on anastrozole (an aromatase inhibitor); six months later, recurrence in a stomach muscle which then put me in Stage 4B: brachytherapy to the that tumor (no picnic) and then put on Ibrance for 7 years; Ibrance became toxic, but my doctor was caring for his dying mother, so no one would lower the dose and I had to stay off Ibrance for extended periods > two recurrences: one in the vaginal cuff that was caught so early, they could find that it was ER+ and PAX8 (gyn cancer) - they did interstitial brachytherapy (not a picnic) and three months later, after a previous negative biopsy, in a lung nodule (treated that with SBRT)- that one had my old mutations and a few more so I went from tmb low to tmb medium. But there were no new targets, so I stayed on Ibrance for another year at a lower dose. Then it started acting up again, so I had to stop it. Also my vaginal cuff lit up where the brachytherapy was. The biopsy was negative for cancer, so it is most likely damage from the radiation - new scan on Monday. Now I am on Anastrozole and Everlimus.
BTW, after my last false alarm, I wanted to go on a particular bc drug, so I saw three doctors that understand my treatment plan - one is a breast cancer doctor. I can't get the drug at this time, but a fourth doctor, my gyn onc, said that he'd write to the company on my behalf if the Everolimus had too many side effects.
Active and happy life: I swim 3 to 4 times a week with a two masters swim teams and once a week with a masters artistic swim team. I chase after grandchildren, my husband and I celebrated our 45th wedding anniversary with family and friends (I performed a solo in the pool in honor of him to his favorite music), etc. I swam throughout my treatment journey. My doctors all think that my activity is part of why my cancer is slow to return (except when I had to take a long time off of Ibrance). I volunteered for SHARE Cancer Support and now I work for them after retiring as a school teacher. I still teach swimming, though. Check out the website: sharecancersupport.org There are many very good webinars.
Corby
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I’m so sorry to hear of your own cancer journey after experiencing your husband’s as well.
Let me say this first: Your concerns for location are valid and I share this same concern. Your care team and you already have an established knowledge of each other. They have the baseline of your history and your diagnosis. Your surgeon said you have the choice where you go and that your team already established with you will always be there for you. If you’re familiar and comfortable with the care options closer to you, it could be a good option. Many providers collaborate with other facilities from other networks and do so extremely well. There is always the option of changing your care providers at any time, especially if you are dissatisfied or feel the care provided isn’t matching your needs.
My care team is 70+ miles from where I live because I don’t trust my options around me, nor do I think I would find the same level of care that I have been blessed to have. I’ve had physicians, when I’ve had legit concerns I was asking them questions, get up and walk out of exam rooms. I’ve had physicians with horrible bedside manners that didn’t care if they were hurting me during exams and respond with “It’s only going to hurt worse if…” while I’m crying and biting my lips and/or tongue. I’ve also had providers that just didn’t listen to me about anything and tried to keep me on medication that didn’t work/made me sick. I fired each of these providers from my care and went somewhere else.
Finally, I’m wishing you all the best along your cancer journey. I’ve just started mine as well, Stage 1A2 and radical hysterectomy was 1/21/25 and I have no idea what’s in the road ahead other than more testing. We are not alone in this, either.
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Hi There Wowza, you certainly have been on one journey, but hey you're still here and living life and your attitude is great! Your story is very inspirational.
I am not familiar with all the Monocular stats yet on what my cancer cells specifically carry as I have not had the bio test yet for it. I do know I do not carry the P53 wild type and MSH2 and MSH6 are intact (which I think all those are a positive thing). I am grade 1 (even though stage 3 due to cancer reaching lymph nodes) guess grade one cancer cells are supposed to be easier to treat then the upper grades.
I meet with my oncologist this Tuesday. I am sure we will set up a date/time to get my port installed and also a treatment plan. I feel like I already know what it's going to be just based off of others.
Last night I slept the longest and best sleep I have since this whole ordeal with the initial biopsy coming back as positive. I came to the realization that……..
Sure I have/had cancer - but as far as I know surgery has taken care of it and there is no longer any more cancer in my body. Maybe their is and then maybe not. Having stage 3c1 means that cancer was found in the lymph nodes that were REMOVED it does NOT necessarily mean that there is more cancer cells lurking around in my body BUT it does mean that there is a higher probability that there is.
So the Chemo and radiation is supposed to kill off any of those cancer cells that might be left swimming around.
Hopefully they treatment will get them all and I can be on my way in life and then again it might not and cancer may return again somewhere else.. and then again it may not.
Over 50% with Stage3 endometrial cancer it never returns again.. some with or without treatment.
So my realization is …. Why should I worry about something that may or may not happen down the road? i'll deal with things as they come. This why I had a good sleep last night and today I feel less stressed and ready to take on these treatments. I've ordered a couple wigs.. I always had very fine thin hair my WHOLE life.. maybe wearing wigs might be the thing for me. I may even decide I like them and wear them every after my treatment stops and my hair grows back.
For me I am going to take one day at a time and just live life.
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