EndoCa: Lymph Node involvement but Stage 1A

Good morning, HysterSisters

I had one of those good news/bad news phone calls from my gynaecologist yesterday, one week after coming home from my total hysterectomy (uterus, cervix, ovaries, tubes).

She said the pathologist’s report confirmed that I had Grade 1 stage1a endometrial cancer. She said cancer was contained in the uterus BUT the pathologist saw some signs of early spread to lymph nodes. She said the oncologist would be in touch.

I was blind-sided by this news, coming in at 5:30 on a Fri afternoon, and she was so quick to rattle off this information and then get off the phone that I didn’t have time to process my thoughts and ask questions. I was feeling so good one week post-op, but now I am feeling very worried and discouraged with no one to talk to because it’s the weekend.

This news has come as quite a shock. I had an MRI before my surgery and my doctor said there didn’t appear to be any signs of lymph node involvement on those images so she said she was confident that a total hysterectomy would be my only treatment.

Has anyone else been through this? Am I getting myself worked up unnecessarily? I am trying to stay positive but I am now filled with anxiety about what happens next.

I wonder if she meant LVSI (lymphovascular soace invasion) or lymph nodes? LVSI is a negative factor to some degree, but it doesn't actually change your stage. I assume you have a follow up appointment with her to decide future treatment or followup requirements? I'd recommend getting a copy of your pathology report, and marking up the parts you don't understand, so you don't forget to ask about them.

Also prepare a written list of questions. You'll be amazed the important things you'll forget to mention or ask otherwise.

Finally, I'd bring someone with you if at all possible. It really helps in getting all the information heard, notes taken, and questions asked. Some people record their appointment (with permission).

Ok, one other thing ... do nice things for yourself while you wait. There's so much waiting and it's torture. Make specific plans to do nice things for yourself, and let others know you're anxious and help distract you and keep you occupied and supported. Sometimes they're just afraid to say anything.

Thanks for the reply.

I will definitely ask for a copy of the report. I have a follow up with the gynaecologist who did my surgery in six weeks, but she said I can also expect a call from the oncologist before then. Hopefully she can email a copy of the report to me in advance. I plan to ask on Monday when her office reopens.

She specifically said lymph nodes. I wish she hadn’t taken me so much by surprise with her call. I am usually a very strong advocate for myself and ask a lot of questions, but I still have post-op brain and this news came at me from left field.

Covid-19 restrictions are still fairly tight in our city. I wasn’t able to have anyone with me at the hospital last week. Perhaps that will change over the next few weeks so my husband can accompany me to future appointments.

I would get a report copy for sure, it’s good that it’s encapsulated and hasn’t spread so thats good news. Did they do a D&C prior to hysterectomy? Did you know prior to your surgery that there were abnormal cells detected?

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Originally Posted by AznivKrb I would get a report copy for sure, it’s good that it’s encapsulated and hasn’t spread so thats good news. Did they do a D&C prior to hysterectomy? Did you know prior to your surgery that there were abnormal cells detected?

They did biopsy, ultrasound, and MRI before surgery. I did not have a D&C since the biopsy was diagnostic for endo cancer. The MRI didn’t show enlargement of lymph nodes.

What a frustrating way to end your week. In December my lymph nodes were staged at 3C1 with metastatic adenocarcinoma and today I am cancer free. It was a crazy wild ride but I trusted my medical team and they got me here. Just take one step at a time and remember to stop and smell the roses and enjoy the simple pleasures. Don’t let cancer rob you of the special moments.

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Originally Posted by Ottertrum What a frustrating way to end your week. In December my lymph nodes were staged at 3C1 with metastatic adenocarcinoma and today I am cancer free. It was a crazy wild ride but I trusted my medical team and they got me here. Just take one step at a time and remember to stop and smell the roses and enjoy the simple pleasures. Don’t let cancer rob you of the special moments.

Thanks for the reassurance. I am happy to know you are doing well and are cancer-free. That eases my mind.

If you don’t mind me asking, what treatment did you undertake following hysterectomy? Did you have any lymph nodes removed during your surgery?

Ask any questions. I figure if I can help someone else go for it. Four of my left pelvic lymph nodes were removed during surgery. Two of those were benign, two were staged at 3C1. I then had 3 more rounds of chemo. Since the margins were so slim between the cancerous tissues and the healthy (Less than .05 cm) and because of those two lymph nodes, radiation was recommended. The radiation oncologist reviewed ALL my tests which included my very first MRI and ultrasounds which were done before I was referred to the cancer center. Those first tests showed two more swollen lymph nodes along my spinal column which reduced back to normal size during chemo treatment. He didn’t like that and suspected they were dormant cancer cells there which is a common route for my type of cancer to spread. Those lymph nodes are difficult to biopsy so since I was going to do to radiation in the other areas we agreed to zap those too. So I had 25 radiation treatments on four areas which included both the spinal cord lymph nodes, the left pelvic lymph nodes and the area that was so close to the cancerous tissues. Then I had 3 radiation treatments that focused only on the marginal vaginal cuff area. This may be more info than you wanted, if so sorry but I will say that when both my chemo and my radiation oncologists concurred that I was CURED, it was all suddenly worth it.

Thank you for taking the time to give such a detailed reply. You have been through a lot and your wonderful outcome makes me feel much more positive about all of this.

My doctor, although wonderful and very skilled, is always in a rush and very brief whenever we speak so I don’t have much information to work with right now. I am someone who craves information and detail so I can feel more in control of my health. I am making a list of questions to have by the phone for when she or the oncologist calls next. I won’t let her get away so fast the next time! Haha.

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Originally Posted by Hope2020 My doctor, although wonderful and very skilled, is always in a rush and very brief whenever we speak so I don’t have much information to work with right now. I am someone who craves information and detail so I can feel more in control of my health. I am making a list of questions to have by the phone for when she or the oncologist calls next. I won’t let her get away so fast the next time! Haha.

Thats a great idea. When someone recommended keeping a journal I scoffed at the idea but did it somewhat anyway. (Bad days have a lot of entries, good days are empty) but you’d be amazed at what the staff need to know. It’s good to have that journal handy. We were lucky in that the whole cancer center staff understood our need for answers and were always very patient with both my husband and I. His questions were taken just as seriously as mine were. When COVID struck he wasn’t allowed to go in with me for any testing, treatments or procedures but he was always allowed to go to the doctors visits. They understood that a patient needed another set of ears and working brain to understand what was being told to me. Especially when I was going through bad spells. Plus there were times he could give them more reliable info than I could. If they wont let someone accompany you during the doctors visits ask if you can either call your “right hand person” and allow them to listen on speaker phone or video conference with that person. We were given that option several times but you had to ask for it in advance of your appointment.